Feeling rubbish...doctors no help, what do I do?
Posted , 7 users are following.
Hi, I'm 21yr female and I feel like rubbish!
For the past 1 1/2-2yrs I have felt absolutely exhausted all the time. Some days I feel better than others. But recently it's just got almost unbearable! I can barely get out of bed, I sleep 12hrs+ sometimes needing a nap in the middle of the day too.
Also have really achey knees, bad cramps in my calf muscles which are ridiculously painful, pins & needles in my feet/back/thumb, swollen scalloped tongue, now my fingers feel really podgy though they don't look any different. My neck is fairly tender and my glands are 'up' nearly all the time. Brittle nails & hair have developed recently, as well as odd dizzy spells where i feel like the room is spinning or I feel unsteady (not collapsed or fainted...yet). I did have glandular fever around 5 years ago.
Went to the doctors, BP is fine, bloods say I have no thyroid/kidney/liver problems and not anaemic. Doctor says she has no idea what is wrong with me so to keep an eye of symptoms for 6 weeks and to have a check up especially if my fingers still feel podgy as it might be infectious arthritis.
I just feel awful and there doesn't seem to be anything I can do!! I've been searching and it seems to be that I have a lot of hypothyroid symptoms. I have seen bloods don't always show if hypo. Could I be hypothyroid? What can I do?
Feel like i've ran out of options here! 
1 like, 18 replies
barbara98940 FlopsyFlo
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FlopsyFlo barbara98940
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FrannieNN FlopsyFlo
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Your story is so familiar, but I'm not a doctor and can't tell you that you're hypothyroid based on your symptoms sounding like mine. I have also had Chronic Fatigue Syndrome and was very deficient in Vitamin D, and those along with other illnesses, can cause similar symptoms. But, if you are hypothyroid and your doctor hasn't done a full thyroid panel and the tests that Barbara has suggested, it's possible that you were misdiagnosed as normal. Some doctors who haven't kept up with current thyroid studies think that TSH is the only test needed to diagnose thyroid issues, and that is not true, so many thyroid patients had to take the time to find a knowledgeable doctor who knew how to diagnose and treat hypothyroidism.
That aside, if he/she lets you should feel like this for another 6 weeks before they take you seriously, they shouldn't be your doctor. Maybe it's my age... or that I used to work in health care and see doctors who are still human and can make mistakes... but any doctor who would dismiss my symptoms and put me off for that long when I'm feeling so awful is going to be replaced! If you hired someone to do a job for you, and they didn't do it, you wouldn't hire them again. It shouldn't be different in health care. I hope you feel better soon!
FlopsyFlo FrannieNN
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I will have to find out what specific tests they did - that might help. Yes I have seen a lot that it is largely undiagnosed in hypothyroid patients as TSH can be normal even if you are experiencing symptoms!
Yes I think the worrying thing for me is the dizzy spells. They aren't too often and don't last that long (maybe 30 seconds max, 1-3 times a week). But I'm still worried that I am actually having spells like that! I work at a vets and honestly I'd rather be treated by them aha! Maybe i'll see if there are any other doctors in the area.
FrannieNN FlopsyFlo
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What is sad is that there are so many people who are undiagnosed or undertreated for hypothyroidism who are as frustrated as you are, yet medical students are still learning 50 year old information. I lucked out in finding a doctor who was also hypothyroid, and when I wanted to try a different medication, her own doctor had just happened to put her on the same medication before I went in to request it. I've been much luckier than most, and I participate on these forums in the hope that people seek better medical attention rather than accept their doctors' diagnosis that there is nothing wrong... or in my case... that I shouldn't expect to feel better since I'm not 20 anymore! And, here you are, still 21 and basically being told the same thing. That's just not right. I think the situation in the US is the same as in Britain - docs are so busy and undercompensated that they don't have the time to spend with their patients or to read up on current studies.
I had just 2 major episodes of vertigo before I started thyroid meds, and it was extremely scarey and unnerving to have the world spinning in so many directions at the same time. It seems to be a symptom that some hypothyroid patients have, but I don't know enough about it to know why it happens. Hypothyroidism means becoming deficient in so many vitamins and minerals due to us absorbing less from our food; maybe it's tied to one of those or to the tinnitus some of us have. I feel awful for you having those spells as often as you are!
A proper diagnosis is simply key for you to get better. If all of your symptoms are from being hypothyroid, one little pill will make you feel so much better!
LAHs FrannieNN
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FrannieNN LAHs
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LAHs, I never thought of searching vet sites for information. That's a great idea! That science has always amazed me. How does my vet treat my pets who can't describe their symptoms, and then I jump in by describing what I think my pet is feeling, which must really muddle their diagnosis. Poor FlopsyFlo can describe her symptoms—and with much better awareness than I had when I first went to my doctor about this—and she's told she's normal and is sent home to live like this for 6 more weeks... just to see if it alleviates itself. Yikes.
LAHs, did you figure out if you had adrenal issues or if your cortisol levels were off? If so, how did you treat it? Wouldn't it be great if hypothyroidism was as simple to treat as an infection is by taking an antibiotic?
LAHs
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LAHs FrannieNN
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I did try the online calculators but there wasn't one for the cortisol units, I can't remember all the details now but dividing by 36.4 figured into it some how (it was 20 something for dogs). I will post the conversion if I can find it again. I didn't actually troll the vet sites I googled "cortisol unit conversions" or something like that and that vet article popped up.
However, my cortisol test showed up as "normal" but I thought it was low. Haven't we heard that before! Now it is possible to boost your cortisol levels but that is going to interfere with the T4 to T3 conversion, and that is the last thing we want. We want as much T3 as we can get if we are bad converters. So I am leaving the cortisol issue alone - and I am eating Brazil nuts! Why, because they have an enormous amount of Selenium in them and we need that as a catalyst for the T4 to T3 conversion, it helps the T4 lose that one iodine molecule.
Gosh, why can't these guys who go to medical school for 4 years help us with all this instead of us struggling our way through very difficult stuff. Think about it, if they studied all of this in detail for a couple of months how much good they could do in the world. It has taken me a year of intense study to understand a little more than my doctor and I have no medical nor organic chemistry education - it was hard work.
LAHs FlopsyFlo
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I had very similar symptoms but in my case it was, for sure, hypOthyridic. See if you can save up for a complete thyroid panel blood test and have a look at your T3 and reverse T3. That was my problem, low T3. (In the US this cost a little less than $300, ) Regular blood tests (TSH and T4) from my doctor showed very little except I was "normal" - at least for Joe SixPac. Before I found a good endocrinologist I suffered as you did for 2 years. I finally flipped and walked into the insurance office of my hospital (it's different in America, you sign up for an independent health plan) and asked if I could pay for the blood tests I NEEDED! - I exploded, I couldn't stand it anymore, I just needed to know in detail what my problem was - and that set the cat amongst the pigeons! And, there must have been an angel sitting on my shoulder because the lady in the insurance office had gone through the same thing with her thyroid problem. Long story short, I got a new Endo who has put me on Armour Thyroid - which has T3 in it as well as T4. I should mention that T3 is the hormone which gives you energy while T4 is the source material from which it is derived - IF you are a good converter (of T4 to T3) and possess all of the catalysts necessary for the conversion - another big study.
It's a long journey Flopsy, read as much as you can and keep pestering them, you will eventually wear them down, or find a doctor who unerstands the science of endorinology and you will pin point the problem and get the right meds.
FlopsyFlo LAHs
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Gizmo1963 FlopsyFlo
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FlopsyFlo Gizmo1963
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shellyC19 FlopsyFlo
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I am an RN and live in the USA. Some of your symptoms sound very much like low thyroid but maybe your blood level is okay, but it could still be Hypothyroidism. It is not good to rely on just blood levels.
I had that when I was your age, and I spent years misdiagnosed over blood work. I would see an Endocrinologist and ask to be retested for Hypothyroidism. Have a mineral panel done. that includes Vit D, potassium,B vitamins, magnesium, iron, and sodium, calcium. Ask for another CBC, and WBC test.
In some of us, our blood work shows HIGH or Normal but symptoms are starting and getting worse slowly. Log down if anyone in your family has thyroid disease and it helps to show the doctor a list of your symptoms you have and when it started etc...
Arthritis can be checked by a Rhematologist and I suggest you look into that. Thyroid patients often have a form of Arthritis.
Keep us posted on how you do,
Shelly
FlopsyFlo shellyC19
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Ahh ok will have to do some research. My doctor said if my hands still feel all swollen after 6 weeks they would do FI. If they do it might be possible they will look more into thyroid stuff. It's been 3 weeks already and they still feel puffy (but don't look it as much).