Hypothyroid symptoms, vitiligo, low body temp but normal tsh

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Can anyone help? I'm so totally fed up of being ill now. Diagnosed with vitiligo 2 yrs ago, also have lung disease and abnormal heart rhythm. Past few months I've had to have speech therapy for voice hoarseness, have vitamin D deficiency, low ferritin (has come up from 11 to 40 with iron tablets), but the main problem is fatigue, muscle/bone/joint pain that's debilitating. Funnily enough that started the day after taking iron tablets. Skin is very dry and thin. Had a couple of years of severe itching but that's gone now. Have had loads of blood tests and the o key thing that came up was low vit D, ferritin, low folate, less than optimal level of B12. Cortisol levels weren't great but not bad enough to be treated. GP only tested TSH which is 2.52 therefore 'normal'. Body temperature is consistently low - around 35.8. I've read that the body may show 'normal' levels of tsh but may be unable to use it but my GP will not do further tests/look for hashimotos etc. Lupus ANA test was negative. Feel like I'm slowly dying. Before all this I was overactive with tons of energy and motivation - much more so than anyone else I've ever met. GP has finally agreed to refer me to an endocrinologist as he agrees there is definitely something wrong. How can I get the best out of this referral? Does anyone think I could have a thyroid/autoimmine problem? My mother and 2 sisters have underactive thyroid a and there's a strong family history of autoimmine problems.

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15 Replies

  • Posted

    Hello Angela

    Sounds par on the course for a thyroid disorder! Sorry to hear that you are feeling this way. Trust me you are not on your own. been there, dne it, worn the T shirt etc,etc.

    It is truly horrible.

    You may need all your blood works doing again to get a baseline then take it from there.

    For example  a low ferritin can make you feel pretty ill as can a low magnesium, calcium, phosphate and also a low Vitamin D.

    Do you know what you Vit D level was and what it is now? Were you given a optimal target range to aim for at all? I was given a minimum target of at least 75 nnomols?.

    I was prescribed cholecalciferol.

    NB However  TBH I would nottake anything unlessit is prescribed and then monitored under  medical supervision.

    This is because vitamin D is a prohormone and has to be treated with respect. Taking too  much can be very dangerous.

    Monitoring involves doing your calcium, phosphate, parathyroid hormone and vuit D level all at the same time. NB This info is direectly coming from my own private endocrinologist who was/is treating me for a vit D deficiency disorder.

    Got a headache hence bitty posting.

    Thanks 

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    • Posted

      Hi, not sure of the exact vit D level but I was deficient. GP gave me same tablets as you, each tablet 20,000 a day for 15 days then one a month. Not been retested. I took high strength magensium and vits A & K with it (after doing some reading!). Iron tablets, along with all of those, have been making me feel rough (tummy troubles). Ferritin has come up from 11 to 40. Only discovered that ferritin was low after requesting the test due to a recent family member's diagnosis of haemachromatosis (iron overload disease). Funny how I only had a hoarse voice before starting iron tablets and have rapidly gone downhill since. Personally I think I have hashimotos. But not optimistic that the endocrinologist will recommend any treatment because my TSH was in normal range. Feel so desperate I may resort to buying natural dedicated thyroid online and trying it in small doses of I do t get any help from the endo doctor. Apparently vitiligo can go hand in hand with Hashimotos. Do you have underactive thyroid then? Your comment reminded me that Inforgot to mention daily headaches 😩
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    • Posted

      You mentioned buying thyroid meds online. I have to do so because I am allergic/intolerant to maize starch (aka corn) which is in all the synthetic thyroid meds and because I'm in the UK I can't get the natural meds on prescription. This is with the full support of my NHS GP!
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    • Posted

      Is it costly? I'm in the UK too. Currently losing hundreds of pounds being off sick so am happy to pay if it makes me better. Do you know of reliable sites to buy them from? Obviously I plan to wait and see the endo first (could be 3mths 😩) - also don't want to affect any further blood tests they may want to do either. Sigh..
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  • Posted

    Hello angela, I'm sorry to hear you've got so many problems. One thought that occurred to me is: is it worth switching to a different iron supplement to see if stops the joint pain?

    Another idea is: I get joint pain when I eat fruit. It's like I've sprained it. It varies which joints are affected. So try cutting out fruit (including dried fruit and tomato) for a week to see if it helps. If it does, re-introduce the fruits back in, one at a time, every 3-4 days.

    It might be worth a try to see if you feel better avoiding gluten and soy as both of these can be detrimental to the thyroid. Although I test negative for Coeliac, I test positive for wheat on a RAST test. If I eat wheat my gums split and I get blood blisters on the inside of my cheek. Well done for getting a referral to the endocrinologist. It may be worth asking the endo to test your thyroid antibodies TPOA and TgAb. Ferritin needs to be 70+ to process thyroxine properly, so keep taking iron supplements. All the best.

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    • Posted

      Thanks Barbara - I'll do some reading about different iron tablets - the ferrous fumerate are awful and I haven't take any for 2 days as I'm tired of the tummy problems. I don't eat much fruit but have recently been trying to eat more dried fruit and nuts for the extra iron content! I tested negative for coeliac disease too. I guess there could be an issue with wheat but would it come on so suddenly at the age of 50?
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    • Posted

      In answer to 'could it come on at age 50?' The answer is 'Yes, mine did!' I became allergic to penicillin at yhe age of 46 after being fine previously. Over the last two years I have developed allergies/intolerances to loads of foods.
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    • Posted

      I suggest you take your iron tablets with food. And avoid calcium supplements within 4 hours. One needs vitamin C to absorb iron, so try eating spinach or kale. Also drink lots of water to stop the constipation.

      I was prescribed ferrous sulphate 200mg tablets. I could tolerate 1 a day (even though I was prescribed 3 a day), it still increased my ferritin level, albeit slower.

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  • Posted

    Ideas for visit to endo:

    look up symptoms of hypothyroidism and tick which ones you've got.

    Ask if it's possible for TSH to be in range and still have thyroid problems.

    Request tests for T3 and T4.

    Ask what else could be causing you to metabolise your food so poorly that you are deficient in so many vitamins and minerals.

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  • Posted

    I'm sorry to hear your having so many problems. That's so frustrating. I hope you get in to see a good ending. You should at least be tested for thyroid antibodies and free t3, free t4, and reverse t3. TSH is not always a reliable indicator of thyroid function, and there is a lot of controversy as to the normal reference range (some resources say normal TSH should be below 2.5). Given your symptoms and the fact that autoimmune disease/hypothyroidism runs in your family, I think it should definitely be explored! I hope you make some progress in this soon!
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  • Posted

    Thanks ladies.. I'll swap the iron tablets for some that don't aggravate the runny rather than giving up on them, I have been taking them with vitamin C drinks. GP never mentioned parathyroid tests. In fact he has not even physically examined my thyroid gland/neck and didn't seem overly concerned about my low body temperature. Still 35,8 this morning. From what I've read, if temperature stays low, everything slows down and it can be devastating to the body. It's potentially another sign of hypothyroidism too. Haven't gained loads of weight, maybe a few pounds, but I've always been fairly slim. Eyebrows are thin but don't know if that's because of plucking in the past - they don't seem to have recovered! Does anyone know of any magic pick me ups? Have to go back to work soon but don't feel well enough. Endo referral could take 3 mths 😩.
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    • Posted

      The way I manage to survive work was to negotiate a flexible working hours contract. You may not be able to do this as you've not yet been diagnosed, but see.if you get an hours lunch break and go to sleep during it!

      If you can, try and do some exercise (even a short walk helps) as this can help kick start the metabolism, though it's a fine line with the fatigue when to give up and sleep when to move. My magic bullet to feel better is a hot bath. This reaises your body temperature and seems to help the metabolism for several hours.

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  • Posted

    Help!  I've totally had enough now.  Just been to see a gastroenterologist (I thought it was to find out why my iron levels were low but he said he'd been asked to do a gene test for haemachromatosis because it's in my family).  He said as my tsh levels are 'normal' nobody would consider doing a full panel of thyroid tests.  Sigh.  He couldn't tell me why my body temp is low, why I'm in pain, why this all started after starting iron tablets 3 months ago etc. and would not take into account the Vitiligo or the fact that autoimmune and thyroid problems run in my family.  He wouldn't do the gene test for HH either.  He said, maybe it's non inflammaroty arthritis (but couldn't explain why it developed suddenly), or maybe it's fibromyalgia (but I don't have tender muscle points, to the touch), or maybe it's chronic fatigue.  So, I now need to pay privately to have a full panel of thyroid tests done, as I'm still not convinced.  God knows what I'll do if any of them come back positive because the nhs will not listen.  Once they're done, we'll see what else is left.  Can anyone recommend reliable labs for these tests?  Does anyone think I'm barking up the wrong tree??
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