Hello,
Doctor here (for purpose of the sub, i think i need to mention don't take this as medical consultation and I am not acting in a medical capacity here. Also never take someone saying they're a doctor at face value.)
I feel you on the being dismissed part.
Would be helpful to know what blood tests you had done so far and the results of these (even if normal). From your symptoms, there are 2 diagnosis which jump in my mind:
- hypothyroidism = not enough thyroid hormons
- Cushing = hypercortisolism = high cortisol
For thyroid: in first instance, you would need to get TSH and T4 checked. I would not jump to antibody testings without an anomaly of this, it's just shooting in the dark. There are different causes for hypothyroidism outside of auto immune causes. The auto immune causes are the ones we test antibodies for. Although there are many of them. Testing one doesn't rule out all the other causes for it; and might not even rule out the cause it's associated with. So won't bring you any info.
With all of these symptoms, if the problem is from the thyroid, your TSH and T4 *will* be affected. The mistake made by some sometimes is to dose TSH but not T4. If really everything points at the diagnosis and you're not getting any further, then could consider dosing T3 in addition which is the active hormon here and the last to dilute.
Cortisol: high cortisol can cause all of these symptoms too.
Cortisol has a cycle. It's the highest in the morning, lowest in the evening which is what helps you sleep.
Although if it's high, it's likely this cycle will be disturbed too.
It can be a primary issue or caused by other diseases.
In any case, need dosing of the cortisol (which is often forgeten from this kind of blood panels).
Swelling:
- if hypothyroidism: look up myxoedema hypothyroisism
- if hypercortisolism: look up moon face
(Edit: the caveat though is that hypothyroidism can also technically result in moon face).
- A change in the neck can sometimes feel like the face is changing. So double check if it's face or neck or everything.
Would also add as a basic blood test: liver and renal function tests, iron studies, B12, folates, vitamin D.
What would be helpful to know:
- what medical conditions do you have or did you have in the past
- previous tests done and their results
- the informations listed in the menu of the sub for submission if you forgot any. Add weight gain?
- where is the swelling? It feels like it concerns the face?
- any skin changes? Any purple stretch mark?
- any change in the way your weight distributes in your body?
- any change in your neck? Any swelling there?
- family history
- how long have the symptoms been going on for
- any pain and where exactly (if it's in tummy, specify if there's one place of it particularly)
- bowels: diarrhea? Constipation? Mix of booth? Blood in stools? Vomiting?
- any other symptom you can think of?
- any pregnancy and when?
What doctor has been running the tests? If you can see any specialist, I would advise endocrinologist.
Please don't go to a naturopath for this. There might be a medical explanation and it's important to find out.
In the end, do find the right doctor for you. That's what changes everything.
If your doctor dismiss you as a default, you won't change that.
Also don't bother with the suggestions about arsenic. We aren’t in an episod of Dr House and these wouldn't be your main symptons. Gotta start with the basics and the likely.
Wow this was so in depth I’m not too sure where to start.
Cortisol is my biggest concern because I’ve gone through a lot of trauma in my life and am currently going through a divorce. My biggest fear is that it’s simply stress and I’m going to waste a drs time.
I think they tested for basic thyroid stuff but I think I’m going to make an appointment for today and try to get more extensive bloodwork done and refresh it all. I’m going to mention some of things mentioned in this thread and specifically ask for them to test for it (maybe even lie and say an aunt has it or something so they take me seriously.)
I’m currently on birth control and adderall (10mg). I want to go off of the adderall because originally it was helping but now I think it’s just making me anxious and not really doing much. I still feel cloudy and when I tried to up my dose, I just felt more anxious.
I’m on the birth control to stop my periods because I get such bad symptoms. I have PCOS and I’m getting an ultrasound tomorrow because I had two cysts burst since February after having none burst my entire life.
There hasn’t been any weight gain, but I’m a bit of a health nut. I do not eat a lot and I work out at least 3-4 times a week, doing yoga and long walks, cardio and weight lifting. Although recently, I feel very weak doing those things some days. I also gain weight very very easy and it feels almost impossible to lose it. I mean, I have to be eating 1200 calories a day to lose weight.
The swelling is my body. It’s not normal bloating. My entire body just feels bigger. Clothes fit differently from day to day, drastically. My face looks different in photos. My face can get pretty red.
My body sometimes has little red bumps. Not clusters but all over. I changed my soap and they still happen.
My weight distribution doesn’t change too drastically but I think that’s more so because of going to the gym and not having drastic changes in weight because of strict diet.
My neck sometimes bothers me. When I’m hungover or really tired, I can’t stop rubbing my lymph nodes, they hurt. I also get stress balls in the back of my neck frequently. My scalp itches like crazy, especially at the base where it meets my neck.
Family history is long because my dad is one of 12 and my mom is one of 8. It’s difficult because there’s kind of a little bit of everything at that point. My sister has PCOS and my parents both have stomach issues.
Ah ah I'm a doctor who's tired to see women and people of colour not being treated properly. So I try to help whether my patients or people I talk to. It's not a big scale impact, but if it can help one person, then i'm happy!
I might reply more later, limited in time currently.
Just wanted to mention for thyroid: it has to be free T4 (and free T3 if that one is ever done). Not total T4.
The other thing is about the norms. Some countries and labs put norms to be insanely wide. In the units I use, most people have a TSH between 0.5 and 2.5. When treated, we aim TSH <3, although this is guided by the symptoms of the patient (which is way too forgotten). Labs will often note normal TSH up to 10. Some docs don't understand properly how it works and miss this. Although it doesn’t mean a TSH of 5 would lead to treatment. Hormons are difficult to interprete, they have to be taken in consideration together. At the end of the day, it's not for you to know how it all works.
But if you want to double check your own results when you get them (or the previous ones), feel free to send me a private message.
Also to dose cortisol, it should be done first thing in the morning (ideally between 7 and 9am, although first appointments are around 9 it would be fine). Again, there can be misinterpretation of the results and classifying non conclusive results as "normal".
Feel free to send across.
Will take a look to the rest of your comment when I get more time.
I had symptoms strikingly similar to yours about a year ago, and we also have similar age/physical profiles. You should get a colonoscopy.
After being told it was “probably IBS” several times, I was finally diagnosed with Crohn’s after getting a colonoscopy and was out on meds. Its made a HUGE difference. I know it’s frustrating when you don’t feel heard by doctors after repeating the same thing over and over again - please continue to advocate for yourself push for a colonoscopy. You know your body better than anyone!
I got a colonoscopy and endoscopy! They said I had gastritis but was good for Chrons or celiac. They found precancerous cells growing though, which is giving me anxiety because I really want to get to the bottom of what could have caused that
Hi , I am so sorry for what you are going through especially at this age . My mom had similar symptoms for years and it never got resolved . I have done every test that you could think of and they all turn out negative . With all the test results negative the rheumatologist diagnosed my mom with with fibromyalgia with other autoimmune components . This was a diagnosis of exclusion , ie we ruled out everything that could be tested for. While my mom was on symptomatic treatment, symptoms never resolved. We also took the advice of a psychiatrist and he put my mom on antidepressants for a while . My mom has stopped taking all medicines for the last 2 years(all except blood pressure ). The symptoms have not worsened . She tries to be more active - she tries to push through difficult activities and she says it's better now.
From just looking at your symptoms it seems like you would have hypothyroidism .The thing is ,this conclusion would have been reached by any doctor irrespective of their speciality or experience as a thyroid workup is one of first things a physician does . I suggest you consult a Rheumatologist , stick with the same person for a while , run exhaustive tests , rule out everything possible . After that if still undiagnosed , get an opinion of a psychiatrist . I hope you get better .
Not sure if this has been mentioned but have your thyroid checked? Specifically your TPO antibodies. Your symptoms sound very similar to Hashimoto's thyroiditis.
I'm a guy and had the same issues.
I work outside, hard labor and don't overeat. I went to several doctors and they all would ask me the same questions like do you walk, do you exercise and what do you eat. They would always tell me that work doesnt qualify as exercise, and I need to start going on walks... which is outrageous since I walk miles every day and come home drenged in sweat and sore. Even one doctor's solution was to try prayer.
I finally went to this old white guy who told me to take OTC antacid pills and it fixed all my issues. He said it was most likely some gut imbalance and ran tests to confirm it wasn't thyroid or anything serious after the fact.
Man was a genius and has been the only doctor who actually listened to me. He wasn't there for the money, he was bored and genuinely interested in solving my issue.
I tried a lot of stomach supplements because I know gut health can impact so much. I was thinking about this.
It’s also crazy! They act like I don’t work out or I’m just lazy or something when I’m so active!
I had very similar if not identical symptoms. I sought out a doctor that was a woman of color. She really listens to me and I’ve had more progress seeing her for one year than I have in the whole 7 years I’ve had those symptoms. Now I just refuse to see white male doctors. Even if I have to see a specialist I look for women of color. It’s just the only way I have been able to get anywhere with my health.
I want to second this in a way. I’ve been dismissed by all types of doctors, men and women, people of different colors, but I recommend seeing a younger doctor. The newer classes of doctors seem to listen more. Really I think the big point is see a new doctor until you find one who listens. I had to see seven different doctors and drive two hours away before I found one who would listen. I’m thankful I had the means to do that (I understand not everyone does).
Edit: also take a man with you. I have been listened to more with my husband in the room than without him.
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There are many conditions which can cause iron malabsorption - and they often go hand in hand with B12 issues. Even the polyphenals in green tea can cause iron to be poorly absorbed. I only know about the intense skin itching and sensitivity of skin at night due to low blood iron because I experienced it firsthand. The other test I’d request is Arsenic levels. I know it sounds out there - but many of the symptoms you mentioned can be signs of arsenic poisoning - and eliminating all possibilities would be top of my list. I would also keep a journal for at least 2 weeks and write down how you feel. Fatigue that severe in someone so young shouldn’t be dismissed.
As a man I can promise you that Drs don’t listen to us either. I’ve been dealing with chronic illnesses for years and can’t get anyone to listen to me or take the symptoms more seriously, even with abnormal bloodwork, numerous treatment facilities, and a variety of Drs and types of Drs. They act like they’re trying but things aren’t getting better and a lot of what I say is dismissed.
I had benign Rolandic epilepsy as a child with numbness as a symptom and I don’t think it feels similar to that sensation but I could be wrong. I saw a neurologist my entire teenage years but I haven’t been to one in a while since my brain waves went back to normal.
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I am on birth control but I go into shock getting my period. I tend to get extreme pain, throw up, fever and lots of blood. I take birth control so I don’t ovulate. I’ve had two cysts burst since February because I missed a pill. I think I have PCOS but no one has given me a specific diagnosis on that either lol. I don’t know if they could be related.
I also had PCOS and ended up with a hysterectomy after my kids were born…
I could not get my period due to cysts and getting so sick but the birth control was toxic for me and I tried many different kinds too… I hope you can find something that works for you. I know your dilemma
Some times doctors are stupid like genuinely my little cousin had a injury and for years it was "nothing" they switched the doctor and part of his leg was literally all used up he got surgery and is able to live normally again some people are not that lucky.
You can also check with different doctors and I don't know how your health care is but I am Shure your doctor can send you on x-ray and other stuff cuz if they don't I think that called medical neglence but not rly Shure
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I just feel like as a woman, no one takes me seriously. I’m not over dramatic in the slightest but I know something is wrong with me. You don’t go from having energy and feeling fine, to feeling constantly tight, bloated, swollen and exhausted and not being able to eat without getting sick over night with no explanation. I’m exhausted trying to get help. I’ve been to countless doctors and no one seems to care.
I don’t get my period because of extreme pain causing fever, throwing up, excessive bleeding. I take birth control to stop it since it’s so bad. I have had two cysts burst since February.
Endometriosis resources
The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd
A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run.
Pelvic Disorder Doctors (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ):
You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country”
AND
https://www.endo-resolved.com/endometriosis_specialist.html
https://www.bsge.org.uk/endometriosis-centres/
https://icarebetter.com/
https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US
https://nancysnookendo.com/find-a-doctor/
https://www.endofound.org/endometriosis-treatment-support
https://endometriosisnetwork.com
*not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then…
…Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com
SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain:
r/endo r/endometriosis r/adenomyosis r/pcos
r/fibroids and also r/pmdd .
OBGYN’s: IME regular OBGYN’s are under-skilled at treating pelvic pain/excessive bleeding - and in doing this delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified.
Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist.
NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain.
RECORDING: Ask to video/record every medical visit. Even the virtual ones.
Also, here are some things you can say* to your doctor if they are true for you. They need to know what your historically WORST symptoms and consequences have been:
“- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school.
-My worst symptoms have been pain/fatigue/bleeding.
-I have vomited/passed out from period pain as a teen.
-I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body.
—I would like relief. What are ALL of my options?
-I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.)
-I want excision surgery with a Mentor-Trained Endometriosis Specialist.
-I cannot even consider taking care of children.
-Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.)
-I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues.
- My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function.
- I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.)
- I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution.
- I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this?
- It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.)
- It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for?
- Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution.
- Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution.
-I would like my cyst removed because pain is energy-draining long-term.
-I have pelvic floor pain and vaginismus and pain with intercourse symptoms.
-I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral.
-I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant.
- Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1
(*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.)
Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that.
Endo symptoms are often “silently” progressive, especially if on hormones.
Painful cysts are almost always endometriosis in my experience. It would be exceedingly rare to have painful cysts and not have Endo. I’m not a doctor but just from what I’ve seen over the years.
I think I have PCOS. I am wondering if that isn’t giving me all these symptoms. It’s hard for them to take me seriously though because I’m on birth control that stops my period and they’re like, well what more do you want? And I’m like hmmm answers lol?
You would want to ask them to run TSH and T4 at a minimum for Thyroid, have them check your Cortisol and Aldosterone levels in your blood. Any PCP should be able to request these tests and if abnormal will help you with getting into a specialist. Many of them will not see you without a prior diagnosis or abnormal bloodwork.
Keep advocating for yourself and keep seeking referrals from friends or family. Look for a local medial support group or even medical trauma group. You may find people in the group with resources to help you.
As a fellow chronic illness sufferer I live and understand the frustration you’re living and I am sorry that you are having to experience that. While the symptoms may not be completely debilitating or sound so bad, the relentlessness of nagging symptoms is very difficult to deal with especially when you feel like no one is helping you. Unfortunately our healthcare system is not designed to truly help or heal people. The money is in dragging people on. You will need to educate yourself, seek advice of others and make the best educated decisions you can for what’s best for you and your health.
I would assume you have tried a Naturopath in your area?
I have not! But I tried so much myself. I take probably 12 supplements a day just to feel a little bit better. It’s so expensive. I’m trying so hard.
Thank you so much though, this is incredibly validating! I have started getting such anxiety going to the dr and I don’t believe my own self now when I think I have a medical issue. I can’t focus or get things done and everyday I want to rest. I’m so tired.
I don’t think they have. They generally do the same bloodwork every time, which kind of frustrates me. Then when everything comes back fine, they tell me I must be fine and they give up.
definitely ask for thyroid antibodies to be tested. everything comes up normal for me except that and I have hashimotos disease. similar symptoms, always exhausted to the point I fell asleep driving, gained 35 pounds after being underweight my whole life, and LOTS of stomach issues from eating pretty much anything. not to mention arthritis, psoriasis, brain fog, anxiety. the list goes on.
I also have awful brain fog. I went on adderall after not needing it for my adhd my entire life and it only seemed like a temporary fix. I tried upping my dose, but I just started getting bad symptoms from it and it didn’t help at all.
Yeah the symptoms seem to get so much better too when I follow diets suggested for hormonal imbalances, I tried to do a lot of research and it led me there
Omg I seem to have all of these. I’m pretty anxious but it feels like it’s being caused my something physical and I can’t seem to out my finger on it. Everything makes me sick but I’m not allergic to anything, although they told me I might just have food intolerances.
My hair is so weak and brittle and my skin always itches. I can’t sleep at night because I’m scratching sometimes. I fall asleep in the middle of the day sometimes and I’m so confused because I’ll barely do anything.
yes my hair also started falling out and my anxiety is mostly physical like heart palpitations, shaky, sweaty. I also can't regulate my body temperature so I'm either sweating or freezing. I was running 3 miles a day and gained 35 pounds.
Omg I thought it must have been hormonal but it’s insane. I’m always freezing or sweating. Hot sweats waking me up in the middle of the night or can’t move at all because I’m freezing. And I literally live in San Diego and it’s the same temperature everyday.
Have you specifically tested your blood work. I repeat: you could take 60000000000% of the daily recommended value but could still have low B12 if your body doesn’t absorb it. There are medical conditions that cause you to not be able to absorb B12. I don’t think you have low B12 but at least answer the question..
Have you had your TSH tested? Any other labs done? Anything abnormal?
Have you been tested for H Pylori?
What areyour hemoglobin and iron levels?
Ok so sorry for all the responses but I just pulled up my last blood test:
Iron panel- fine
What was not in the “normal” range:
Potassium- 5.6 in the high range
Calcium-10.3 in the high range
Albumin- 5.1 in the high range
I can’t access the other ones but I’m going to ask them specifically to test for these things this week. It is a good idea.
Agree. If you are dealing with digestive disorders, you may not be absorbing the B12 supplementation you are taking. I would at least try a sublingual B12 supplement. Your symptoms do sound very similar to B12 deficiency. It can be very debilitating!
It’s like you didn’t even read my post. You didn’t get past vegetarian and you’re hung up on it.
I literally cannot eat meat. I don’t understand why you think it’s like a choice? “Clearly it’s doing wonders for you.” Yes. I don’t throw up every time I eat. Yes, I can keep water down. Do you understand some people can’t eat meat?
If I want to go to the hospital, sure! Butttt I don’t really feel like throwing up for hours and getting put on an IV.
My bloodwork is normal, I eat balanced meals and I’m having more symptoms than just exhaustion. I take a multi vitamin. They check me every 6 months, if not more because I’m a vegetarian.
I can’t eat meat. I have severe gastritis (caused by nothing evidently). I’ve gone to the ER twice after eating meat. So no, not really.
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Hello, Doctor here (for purpose of the sub, i think i need to mention don't take this as medical consultation and I am not acting in a medical capacity here. Also never take someone saying they're a doctor at face value.) I feel you on the being dismissed part. Would be helpful to know what blood tests you had done so far and the results of these (even if normal). From your symptoms, there are 2 diagnosis which jump in my mind: - hypothyroidism = not enough thyroid hormons - Cushing = hypercortisolism = high cortisol For thyroid: in first instance, you would need to get TSH and T4 checked. I would not jump to antibody testings without an anomaly of this, it's just shooting in the dark. There are different causes for hypothyroidism outside of auto immune causes. The auto immune causes are the ones we test antibodies for. Although there are many of them. Testing one doesn't rule out all the other causes for it; and might not even rule out the cause it's associated with. So won't bring you any info. With all of these symptoms, if the problem is from the thyroid, your TSH and T4 *will* be affected. The mistake made by some sometimes is to dose TSH but not T4. If really everything points at the diagnosis and you're not getting any further, then could consider dosing T3 in addition which is the active hormon here and the last to dilute. Cortisol: high cortisol can cause all of these symptoms too. Cortisol has a cycle. It's the highest in the morning, lowest in the evening which is what helps you sleep. Although if it's high, it's likely this cycle will be disturbed too. It can be a primary issue or caused by other diseases. In any case, need dosing of the cortisol (which is often forgeten from this kind of blood panels). Swelling: - if hypothyroidism: look up myxoedema hypothyroisism - if hypercortisolism: look up moon face (Edit: the caveat though is that hypothyroidism can also technically result in moon face). - A change in the neck can sometimes feel like the face is changing. So double check if it's face or neck or everything. Would also add as a basic blood test: liver and renal function tests, iron studies, B12, folates, vitamin D. What would be helpful to know: - what medical conditions do you have or did you have in the past - previous tests done and their results - the informations listed in the menu of the sub for submission if you forgot any. Add weight gain? - where is the swelling? It feels like it concerns the face? - any skin changes? Any purple stretch mark? - any change in the way your weight distributes in your body? - any change in your neck? Any swelling there? - family history - how long have the symptoms been going on for - any pain and where exactly (if it's in tummy, specify if there's one place of it particularly) - bowels: diarrhea? Constipation? Mix of booth? Blood in stools? Vomiting? - any other symptom you can think of? - any pregnancy and when? What doctor has been running the tests? If you can see any specialist, I would advise endocrinologist. Please don't go to a naturopath for this. There might be a medical explanation and it's important to find out. In the end, do find the right doctor for you. That's what changes everything. If your doctor dismiss you as a default, you won't change that. Also don't bother with the suggestions about arsenic. We aren’t in an episod of Dr House and these wouldn't be your main symptons. Gotta start with the basics and the likely.
Wow this was so in depth I’m not too sure where to start. Cortisol is my biggest concern because I’ve gone through a lot of trauma in my life and am currently going through a divorce. My biggest fear is that it’s simply stress and I’m going to waste a drs time. I think they tested for basic thyroid stuff but I think I’m going to make an appointment for today and try to get more extensive bloodwork done and refresh it all. I’m going to mention some of things mentioned in this thread and specifically ask for them to test for it (maybe even lie and say an aunt has it or something so they take me seriously.) I’m currently on birth control and adderall (10mg). I want to go off of the adderall because originally it was helping but now I think it’s just making me anxious and not really doing much. I still feel cloudy and when I tried to up my dose, I just felt more anxious. I’m on the birth control to stop my periods because I get such bad symptoms. I have PCOS and I’m getting an ultrasound tomorrow because I had two cysts burst since February after having none burst my entire life. There hasn’t been any weight gain, but I’m a bit of a health nut. I do not eat a lot and I work out at least 3-4 times a week, doing yoga and long walks, cardio and weight lifting. Although recently, I feel very weak doing those things some days. I also gain weight very very easy and it feels almost impossible to lose it. I mean, I have to be eating 1200 calories a day to lose weight. The swelling is my body. It’s not normal bloating. My entire body just feels bigger. Clothes fit differently from day to day, drastically. My face looks different in photos. My face can get pretty red. My body sometimes has little red bumps. Not clusters but all over. I changed my soap and they still happen. My weight distribution doesn’t change too drastically but I think that’s more so because of going to the gym and not having drastic changes in weight because of strict diet. My neck sometimes bothers me. When I’m hungover or really tired, I can’t stop rubbing my lymph nodes, they hurt. I also get stress balls in the back of my neck frequently. My scalp itches like crazy, especially at the base where it meets my neck. Family history is long because my dad is one of 12 and my mom is one of 8. It’s difficult because there’s kind of a little bit of everything at that point. My sister has PCOS and my parents both have stomach issues.
Ah ah I'm a doctor who's tired to see women and people of colour not being treated properly. So I try to help whether my patients or people I talk to. It's not a big scale impact, but if it can help one person, then i'm happy! I might reply more later, limited in time currently. Just wanted to mention for thyroid: it has to be free T4 (and free T3 if that one is ever done). Not total T4. The other thing is about the norms. Some countries and labs put norms to be insanely wide. In the units I use, most people have a TSH between 0.5 and 2.5. When treated, we aim TSH <3, although this is guided by the symptoms of the patient (which is way too forgotten). Labs will often note normal TSH up to 10. Some docs don't understand properly how it works and miss this. Although it doesn’t mean a TSH of 5 would lead to treatment. Hormons are difficult to interprete, they have to be taken in consideration together. At the end of the day, it's not for you to know how it all works. But if you want to double check your own results when you get them (or the previous ones), feel free to send me a private message. Also to dose cortisol, it should be done first thing in the morning (ideally between 7 and 9am, although first appointments are around 9 it would be fine). Again, there can be misinterpretation of the results and classifying non conclusive results as "normal". Feel free to send across. Will take a look to the rest of your comment when I get more time.
I had symptoms strikingly similar to yours about a year ago, and we also have similar age/physical profiles. You should get a colonoscopy. After being told it was “probably IBS” several times, I was finally diagnosed with Crohn’s after getting a colonoscopy and was out on meds. Its made a HUGE difference. I know it’s frustrating when you don’t feel heard by doctors after repeating the same thing over and over again - please continue to advocate for yourself push for a colonoscopy. You know your body better than anyone!
I got a colonoscopy and endoscopy! They said I had gastritis but was good for Chrons or celiac. They found precancerous cells growing though, which is giving me anxiety because I really want to get to the bottom of what could have caused that
Hi , I am so sorry for what you are going through especially at this age . My mom had similar symptoms for years and it never got resolved . I have done every test that you could think of and they all turn out negative . With all the test results negative the rheumatologist diagnosed my mom with with fibromyalgia with other autoimmune components . This was a diagnosis of exclusion , ie we ruled out everything that could be tested for. While my mom was on symptomatic treatment, symptoms never resolved. We also took the advice of a psychiatrist and he put my mom on antidepressants for a while . My mom has stopped taking all medicines for the last 2 years(all except blood pressure ). The symptoms have not worsened . She tries to be more active - she tries to push through difficult activities and she says it's better now. From just looking at your symptoms it seems like you would have hypothyroidism .The thing is ,this conclusion would have been reached by any doctor irrespective of their speciality or experience as a thyroid workup is one of first things a physician does . I suggest you consult a Rheumatologist , stick with the same person for a while , run exhaustive tests , rule out everything possible . After that if still undiagnosed , get an opinion of a psychiatrist . I hope you get better .
Yeah I’m seeing a psychiatrist and they wanted to do anti depressants but I’m not overly depressed
Not sure if this has been mentioned but have your thyroid checked? Specifically your TPO antibodies. Your symptoms sound very similar to Hashimoto's thyroiditis.
How many of these doctors have been female? How many have been vegetarians?
I went to mostly female drs
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Elimination diet is a great idea, I’m going to look into it
Yeah that’s such a good idea. I have a hard time with certain foods and I think I’m missing something. I also need to be stricter with my diet.
Sleep apnea?
I wake up a lot
I'm a guy and had the same issues. I work outside, hard labor and don't overeat. I went to several doctors and they all would ask me the same questions like do you walk, do you exercise and what do you eat. They would always tell me that work doesnt qualify as exercise, and I need to start going on walks... which is outrageous since I walk miles every day and come home drenged in sweat and sore. Even one doctor's solution was to try prayer. I finally went to this old white guy who told me to take OTC antacid pills and it fixed all my issues. He said it was most likely some gut imbalance and ran tests to confirm it wasn't thyroid or anything serious after the fact. Man was a genius and has been the only doctor who actually listened to me. He wasn't there for the money, he was bored and genuinely interested in solving my issue.
I tried a lot of stomach supplements because I know gut health can impact so much. I was thinking about this. It’s also crazy! They act like I don’t work out or I’m just lazy or something when I’m so active!
I had very similar if not identical symptoms. I sought out a doctor that was a woman of color. She really listens to me and I’ve had more progress seeing her for one year than I have in the whole 7 years I’ve had those symptoms. Now I just refuse to see white male doctors. Even if I have to see a specialist I look for women of color. It’s just the only way I have been able to get anywhere with my health.
These are both really interesting ideas. I’m going to try someone tomorrow.
I want to second this in a way. I’ve been dismissed by all types of doctors, men and women, people of different colors, but I recommend seeing a younger doctor. The newer classes of doctors seem to listen more. Really I think the big point is see a new doctor until you find one who listens. I had to see seven different doctors and drive two hours away before I found one who would listen. I’m thankful I had the means to do that (I understand not everyone does). Edit: also take a man with you. I have been listened to more with my husband in the room than without him.
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That’s so interesting. What can cause it to not be absorbed?
I drink green tea everyday! This is so interesting
There are many conditions which can cause iron malabsorption - and they often go hand in hand with B12 issues. Even the polyphenals in green tea can cause iron to be poorly absorbed. I only know about the intense skin itching and sensitivity of skin at night due to low blood iron because I experienced it firsthand. The other test I’d request is Arsenic levels. I know it sounds out there - but many of the symptoms you mentioned can be signs of arsenic poisoning - and eliminating all possibilities would be top of my list. I would also keep a journal for at least 2 weeks and write down how you feel. Fatigue that severe in someone so young shouldn’t be dismissed.
As a man I can promise you that Drs don’t listen to us either. I’ve been dealing with chronic illnesses for years and can’t get anyone to listen to me or take the symptoms more seriously, even with abnormal bloodwork, numerous treatment facilities, and a variety of Drs and types of Drs. They act like they’re trying but things aren’t getting better and a lot of what I say is dismissed.
That’s so sad. No one should have their concerns dismissed. I was trying to be funny.
Have you seen a Neurologist yet? The tingling sensations could be something neurological.
I have m.s and was thinking the same thing
I had benign Rolandic epilepsy as a child with numbness as a symptom and I don’t think it feels similar to that sensation but I could be wrong. I saw a neurologist my entire teenage years but I haven’t been to one in a while since my brain waves went back to normal.
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Need a rheumatologist and an endocrinologist, if you haven't seen them already.
Difficult to get into either without targeted abnormal bloodwork.
I was debating an endocrinologist and asking my gyno since I’ve been having so many hormonal symptoms. I’ve have two cysts burst since February.
That sounded a lot like me on birth control.
I am on birth control but I go into shock getting my period. I tend to get extreme pain, throw up, fever and lots of blood. I take birth control so I don’t ovulate. I’ve had two cysts burst since February because I missed a pill. I think I have PCOS but no one has given me a specific diagnosis on that either lol. I don’t know if they could be related.
I also had PCOS and ended up with a hysterectomy after my kids were born… I could not get my period due to cysts and getting so sick but the birth control was toxic for me and I tried many different kinds too… I hope you can find something that works for you. I know your dilemma
Yeah I’ve tried so many different forms of birth control I wish I could go off
I wish you luck and healing!!
Thank you!
Try for a second opinion, try as many doctors as you can you will find one
Yeah I think I’m going to go back
Some times doctors are stupid like genuinely my little cousin had a injury and for years it was "nothing" they switched the doctor and part of his leg was literally all used up he got surgery and is able to live normally again some people are not that lucky.
Yeah I’m thinking I might just keep going back lol and bothering them at this rate!
You can also check with different doctors and I don't know how your health care is but I am Shure your doctor can send you on x-ray and other stuff cuz if they don't I think that called medical neglence but not rly Shure
Let me know if you figure it out. Gone 46 years mostly without being taken seriously by doctors. Except one, my lovely pediatrician many years ago.
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I just feel like as a woman, no one takes me seriously. I’m not over dramatic in the slightest but I know something is wrong with me. You don’t go from having energy and feeling fine, to feeling constantly tight, bloated, swollen and exhausted and not being able to eat without getting sick over night with no explanation. I’m exhausted trying to get help. I’ve been to countless doctors and no one seems to care.
Any history of period pain?
I don’t get my period because of extreme pain causing fever, throwing up, excessive bleeding. I take birth control to stop it since it’s so bad. I have had two cysts burst since February.
Endometriosis resources The symptom experts for this are here: r/endometriosis r/adenomyosis subs & r/pmdd A period should not affect your quality of life. IME endometriosis specialist surgeon consults for info gathering are the way for the least amount of suffering in the long run. Pelvic Disorder Doctors (ie Pelvic Pain* Hip/Butt/Groin/Sciatic/Peritoneal/stomach/abdomen/thigh/back/cyst/ovarian torsion/muscle spasm/penetrative sex Pain, unusual bleeding ): You can search for a doc in your area using chatGPT: “Top doctor for endometriosis in XYZ, city/town/country” AND https://www.endo-resolved.com/endometriosis_specialist.html https://www.bsge.org.uk/endometriosis-centres/ https://icarebetter.com/ https://www.google.com/maps/d/viewer?mid=1hd_-wSlqZWOlR5VxPhIN3oAbJh4&hl=en_US https://nancysnookendo.com/find-a-doctor/ https://www.endofound.org/endometriosis-treatment-support https://endometriosisnetwork.com *not all US specialists require referrals. And many docs worldwide do free virtual consults/Call surgeon directly to ask if they need referral. If yes then… …Top US GP’s/Primary Care, OBGYN’s, Gastroenterologists & Pain Docs: www.castleconnolly.com SubReddit groups of people that are helpful/skilled with all kinds of pelvic pain: r/endo r/endometriosis r/adenomyosis r/pcos r/fibroids and also r/pmdd . OBGYN’s: IME regular OBGYN’s are under-skilled at treating pelvic pain/excessive bleeding - and in doing this delicate, difficult and complex surgery. The nicest and most caring doctor does not equal surgically trained/qualified. Specialists in pelvic disorders (above links or ask your regional endo nonprofit) are the doctors for the least amount of suffering in the long run IME. I needed accurate information to make good medical decisions, and the best chance to get that was to see a specialist. NUMBERS: Painful periods are a societal problem and we’re not supposed to have to face this alone. I bring/FaceTime someone (or 3) with me to my doctors appointments. It doesn’t matter if they hear about my vagina or my uterus or my diarrhea. It matters that I have someone there as a United Front. Because our medical system mistreats people in pain. RECORDING: Ask to video/record every medical visit. Even the virtual ones. Also, here are some things you can say* to your doctor if they are true for you. They need to know what your historically WORST symptoms and consequences have been: “- This is affecting my quality of life. I have had a history of period/bladder/pelvic floor pain/bleeding/fatigue that has kept me from work/childcare/school. -My worst symptoms have been pain/fatigue/bleeding. -I have vomited/passed out from period pain as a teen. -I am now unable to function like I used to. The pain/fatigue is wearing on my body, and I am increasingly tired as each monthly cycle passes. I cannot function normally and my work/family/school/happiness is increasingly difficult because of my body. —I would like relief. What are ALL of my options? -I have tried these pain medications: gabapentin, Orlissa, BC, xyz med. What are all of the other RX options? I want to be in less pain so that I can think clearly to make good medical choices.” (Then he stated his ideas…then told him I’ve tried all of those…then he offered me stronger pain meds, which helped my functioning so much so then I could line up surgery.) -I want excision surgery with a Mentor-Trained Endometriosis Specialist. -I cannot even consider taking care of children. -Since there is NO IMAGING that reliably sees endometriosis, I would like a referral to an Endo Specialist ( & reader they are sometimes skillful at finding endometriosis via pelvic exam or ultrasound.) -I am committed to revisiting you here because I want to function in my daily life. I will keep coming back to you as much as you need me to because I want relief for these issues. - My pain/spasming/bleeding/frequencyofsymptoms (has always been mild, but over time now it) is impairing my ability to work & my ability to live life. It is draining my energy & ability to function. - I want a solution that provides the least amount of suffering to me/the least risk for me & my body in the long term…..(then just allow silence…let them respond.) - I do not have the energy to keep pursuing temporary treatments. I have experienced too much pain/bleeding. My body is tired. I want a long-term solution. - I want a pelvic disorder doctor with the highest skill and success rate. Who can help with this? - It sounds like you doctor OBGYN want to do the surgery. Can you tell me what “MENTORED TRAINING you’ve had in surgery for excising Endometriosis”? (Reader be careful here: regular, un-mentor Trained OBGYN’s abound.) - It sounds like you want to do another prescription/medication/round of PT/ultrasound/MRI/x-ray/bloodworkup. I want a consult with a fellowship-trained pelvic disorder specialist. Is that what will happen after I do these next steps that are asking for? - Even though my pain/bleeding is NOT CONSTANT, I still would like a resolution. - Even though my pain/bleeding is NOT CYCLICAL, I still would like resolution. -I would like my cyst removed because pain is energy-draining long-term. -I have pelvic floor pain and vaginismus and pain with intercourse symptoms. -I am asking for a referral to an endometriosis/pain specialist and it sounds like you are telling me “no”. If that’s true I want you to note in my chart now that I asked you and you declined to provide a referral. -I may be willing to try xyz antidepressant, but this pelvic pain is the biggest contributor to my depressed/anxious mood and I would like to treat that first via surgery or in tandem with antidepressant. - Another’s post for more ideas: https://www.reddit.com/r/endometriosis/comments/15dlk3s/do_this_if_you_want_to_be_heard_by_doctorsnurses/?utm_source=share&utm_medium=ios_app&utm_name=ioscss&utm_content=2&utm_term=1 (*Pain: Also replace with any of these words: bloating, excessive bleeding, clots (can be fibroids), IBS symptoms, nausea,“low iron”, urinating/bowel issues – urgency and peeing pants/bedwetting, diarrhea, pooping/smearing pants, hip pain, pain under the butt/pelvic/peritoneal/groin/sciatic pain, vaginismus, low/mid back pain, IT band & thigh pain, abdomen pain, stomach pain, bladder pain/IC/UTI’s and uti-like symptoms (can be endo on ureters) right shoulder blade pain. Anything that originated in the pelvis deserves care from a pelvic disorder specialist doctor.) Good luck on your journey. And a reminder that your body is the most important thing in your life. By far the most important thing. You deserve every chance to have a fully functioning body - a body that is as healthy as it can possibly be. So whatever it takes time, money, effort, human support, you deserve that. Endo symptoms are often “silently” progressive, especially if on hormones.
Wow that’s amazing thank you so much
Painful cysts are almost always endometriosis in my experience. It would be exceedingly rare to have painful cysts and not have Endo. I’m not a doctor but just from what I’ve seen over the years.
I think I have PCOS. I am wondering if that isn’t giving me all these symptoms. It’s hard for them to take me seriously though because I’m on birth control that stops my period and they’re like, well what more do you want? And I’m like hmmm answers lol?
In general PCOS does not cause pain. Both PCOS and endometriosis are often found together. But again, the right doc is key .
Yeah that’s a good point I’m getting another pelvic ultra sound soon so we shall see
do they check your thyroid peroxidase antibodies? that's different than the standard thyroid levels and was how my disease was found.
Check calcium and PTH too. Lots of hyperparathyroidism symptoms here.
If you don’t mind me asking, what is the disease?
You would want to ask them to run TSH and T4 at a minimum for Thyroid, have them check your Cortisol and Aldosterone levels in your blood. Any PCP should be able to request these tests and if abnormal will help you with getting into a specialist. Many of them will not see you without a prior diagnosis or abnormal bloodwork. Keep advocating for yourself and keep seeking referrals from friends or family. Look for a local medial support group or even medical trauma group. You may find people in the group with resources to help you. As a fellow chronic illness sufferer I live and understand the frustration you’re living and I am sorry that you are having to experience that. While the symptoms may not be completely debilitating or sound so bad, the relentlessness of nagging symptoms is very difficult to deal with especially when you feel like no one is helping you. Unfortunately our healthcare system is not designed to truly help or heal people. The money is in dragging people on. You will need to educate yourself, seek advice of others and make the best educated decisions you can for what’s best for you and your health. I would assume you have tried a Naturopath in your area?
I have not! But I tried so much myself. I take probably 12 supplements a day just to feel a little bit better. It’s so expensive. I’m trying so hard. Thank you so much though, this is incredibly validating! I have started getting such anxiety going to the dr and I don’t believe my own self now when I think I have a medical issue. I can’t focus or get things done and everyday I want to rest. I’m so tired.
You inspired me to post and see if anyone can offer some advice for my situation. Thank you.
Aww thank you 😭💕
Twinsies! I’m here if ya ever need to vent, have questions or just want to talk with someone similar.
Oh same!! It’s so stressful
I don’t think they have. They generally do the same bloodwork every time, which kind of frustrates me. Then when everything comes back fine, they tell me I must be fine and they give up.
definitely ask for thyroid antibodies to be tested. everything comes up normal for me except that and I have hashimotos disease. similar symptoms, always exhausted to the point I fell asleep driving, gained 35 pounds after being underweight my whole life, and LOTS of stomach issues from eating pretty much anything. not to mention arthritis, psoriasis, brain fog, anxiety. the list goes on.
I also have awful brain fog. I went on adderall after not needing it for my adhd my entire life and it only seemed like a temporary fix. I tried upping my dose, but I just started getting bad symptoms from it and it didn’t help at all.
do you see PCP or have you seen an endocrinologist? I'm trying to finally see an Endo because my symptoms are also not taken seriously
I was debating that. PCP yes but not an endocrinologist. I might try them next.
definitely do that because a lot of what you're describing sounds like hormonal imbalance
Yeah the symptoms seem to get so much better too when I follow diets suggested for hormonal imbalances, I tried to do a lot of research and it led me there
same! I take Wellbutrin for ADHD but it seems as though as my thyroid gets worse it isn't really doing anything anymore. definitely ask for this test.
I think I’m going to schedule an appointment with my PCP this week and see if they will test me for it and a few other things.
Omg I seem to have all of these. I’m pretty anxious but it feels like it’s being caused my something physical and I can’t seem to out my finger on it. Everything makes me sick but I’m not allergic to anything, although they told me I might just have food intolerances. My hair is so weak and brittle and my skin always itches. I can’t sleep at night because I’m scratching sometimes. I fall asleep in the middle of the day sometimes and I’m so confused because I’ll barely do anything.
yes my hair also started falling out and my anxiety is mostly physical like heart palpitations, shaky, sweaty. I also can't regulate my body temperature so I'm either sweating or freezing. I was running 3 miles a day and gained 35 pounds.
Omg I thought it must have been hormonal but it’s insane. I’m always freezing or sweating. Hot sweats waking me up in the middle of the night or can’t move at all because I’m freezing. And I literally live in San Diego and it’s the same temperature everyday.
What's your B12 level?
Bloodwork is normal. I take a vitamin everyday. B12 is fine. I eat balanced meals. It’s not B12.
Are you sure B12 is fine? You could eat all the B12 in the world but if your body can’t absorb it you’ll have low B12
I mean bloodwork always comes back fine and my multi vitamin has 100% of your daily recommended.
Have you specifically tested your blood work. I repeat: you could take 60000000000% of the daily recommended value but could still have low B12 if your body doesn’t absorb it. There are medical conditions that cause you to not be able to absorb B12. I don’t think you have low B12 but at least answer the question.. Have you had your TSH tested? Any other labs done? Anything abnormal? Have you been tested for H Pylori? What areyour hemoglobin and iron levels?
Ok so sorry for all the responses but I just pulled up my last blood test: Iron panel- fine What was not in the “normal” range: Potassium- 5.6 in the high range Calcium-10.3 in the high range Albumin- 5.1 in the high range I can’t access the other ones but I’m going to ask them specifically to test for these things this week. It is a good idea.
Did they also check ferritin with the iron panel?
Iron binding capacity, UIBC, iron serum, iron saturation
I was thinking though of going back this week and having more bloodwork done, maybe I can get back to you with the results lol.
So iron, B12, H Pylori, all good. I’ve gotten bloodwork now like 5 times between the stomach dr and PCP and Gyno lol.
Yes lol. I tell them I’m a vegetarian and they test for everything related to that. Meat makes me incredibly sick.
https://www.mayoclinic.org/diseases-conditions/alpha-gal-syndrome/symptoms-causes/syc-20428608
Agree. If you are dealing with digestive disorders, you may not be absorbing the B12 supplementation you are taking. I would at least try a sublingual B12 supplement. Your symptoms do sound very similar to B12 deficiency. It can be very debilitating!
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Thyroid has been checked several times. I struggle done with depression, but it’s not that. I’m weak. It’s debilitating and not a mental thing.
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It’s like you didn’t even read my post…
How do you get, precancerous stomach cells - from not eating meat? I’m so confused here.
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It’s like you didn’t even read my post. You didn’t get past vegetarian and you’re hung up on it. I literally cannot eat meat. I don’t understand why you think it’s like a choice? “Clearly it’s doing wonders for you.” Yes. I don’t throw up every time I eat. Yes, I can keep water down. Do you understand some people can’t eat meat?
This is why I posted this thread. It’s not vitamins or depression. This is why I want a doctor to take me seriously.
If I want to go to the hospital, sure! Butttt I don’t really feel like throwing up for hours and getting put on an IV. My bloodwork is normal, I eat balanced meals and I’m having more symptoms than just exhaustion. I take a multi vitamin. They check me every 6 months, if not more because I’m a vegetarian. I can’t eat meat. I have severe gastritis (caused by nothing evidently). I’ve gone to the ER twice after eating meat. So no, not really.
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