New here and wonder if you can help?

Hello there. I have just jumped over from my Fibro forum as I was hoping you may be able to answer my questions. I was diagnosed in October last year with fibromyalgia. On the fibro forum there is a lot of talk about people also having thyroid problems to go with their fibro. I recently had my thyroid tested because I have hair loss from my scalp but also from my legs. The top half of my legs have virtually no hair. On the bottom half the hair is very sparse and in some areas bald! I know this isn't right but my thyroid tests came back normal. I didn't have to fight my doctor for the tests, she is very accommodating, but when they came back normal I asked what it could be. Just one of those things came the reply. My question is can you still have hypothyroidism and the standard tests come back normal? And if so what should I be asking my doctor to do? Obviously I have fatigue and muscle aches and pains from the fibro but my weight is getting ridiculous. I have to eat next to nothing to maintain weight, if I want to lose weight I have to fast, ie eat nothing but even that isn't working any more. If I eat like a normal person does I literally put 3-5 pounds on in as many days. I have always been able to control my weight, I would just cut back if I needed to drop a few pounds but it just isn't happening anymore. Any help gratefully received.

14 Replies

oldestnewest
  • Hello and welcome,

    This problem frequently happens. Serum Thyroid tests are frequently not enough to diagnose a thyroid problem. You might want to look at this site web.archive.org/web/2010122... and also let us know which tests you have had and what the figures are. We will also need the ranges of the tests you were given.

    Your symptoms certainly sound thyroid related but first let us know the thyroid test results and we can work from there.

    Jane x

  • Yes, your blood tests can come back normal but that doesn't mean 'normal' for us who have clinical symptoms.

    First thing is to get a print-out of your thyroid gland blood test results complete with the ranges (figures in brackets) and post again and someone will comment upon them.

    I shall give you a couple of links, some of the links within may not work but they may enlighten you a little.

    web.archive.org/web/2010122...

    web.archive.org/web/2011041...

  • Thank you to you both. I have just remembered that I asked for a print out of the results (I had some other tests done at the same time) so I will dig those out and post again - decided I would be an advocate for my own health when I was diagnosed with fibro. I have had a look at the symptoms list and I have tons of them including low temperature (which I am now going to monitor on a daily basis). As Arnie said, 'I will be back'

    MP

  • OOps forgot to put the range in my reply below so here they are again!

    Serum Free T4 level was 13.3pmol/l (7.0-17.0)

    Serum TSH 1.53 mu/L (0.40-4.50)

    Thanks again.

    MP

  • Hi just found the results. I had Thyroid Function Test:

    Serum Free T4 level was 13.3pmol/l

    Serum TSH 1.53 mu/L

    Thanks again.

    MP

  • Your T4 is in the low level of 'normal', I know I personally only feel well when they are on the high side. Your TSH is ok, but that won't show if you are converting the inactive T4 to the active thyroid hormone, triiodothyronine (T3). All the blood tests are showing is how much thyroxine is in your blood, you need to know how much T3 ( and T2 , and T1) is getting into your deep layers of cells and tissues. But in the 21st century, there is no way of knowing this! Therefore thyroid function tests are flawed! Get them to test your free T3 as well, and post that too.... Unfortunately a lot of thyroid patients are in the position, with poorly treated thyroid function... And yes, you are right there is a link to fibro and low thyroid function... But trying to pursued the British medical profession of that, is like impossible!

    Catie :)

  • I agree - get your FT3 tested - and your thyroid antibodies. If your GP won't do it, you can get some private testing done:

    thyroiduk.org.uk/tuk/testin...

    I would also suggest getting your B12 tested - preferably the Active B12 test - info here:

    thyroiduk.org.uk/tuk/testin...

    Louise

    x :-)

    ps - if your user name is not Dr Who related then I am a Sonataran's Auntie! ;-)

  • Hi

    I was diagnosed hypothyroid, when my tests results were normal but 'borderline'. My results are still normal but my FT4 and FT3 are always low. I think I am one of those people that feel better when my TSH is less than 1 but my test is always within range before starting medication.

    I too was diagnosed with Fibromyalgia and then CFS about a year later. As you say, you have to take you health into your own hands as the NHS just offer mostly useless treatment with no explanation of cause.

    It's my belief(at least for some)that Fibromyalgia is a collection of symptoms from untreated/under treated hypothyroidism.

    I was given T4 meds(Levothyroxine) for years, which made an initial difference but quite quickly I got worse. Finally after a long period of convincing doctors and fighting for my health I feel I am almost there, after being given T3 meds(Liothyronine). Still a long way to go though!

    I hope you find your solution. I think the trick is to educate your self as much as possible, read the research(I have to save it to my pc, otherwise I forget lol) and then try and find a way to get you gp/endo to think outside the box and listen to you, without offending them. It's a balancing act!

    Good luck X

  • Your free T4 level is a bit low. Would be good to get T3 checked too. Have you had estrogen levels checked? High estrogen can sometimes cause low free T4 (with high total T4). the beginnings of secondary hypothyroidism could be another possibility (pituitary problem).

  • Although your results might look "normal" you might not be using the thyroid hormones very well. This can happen if your levels or iron, ferritin, vitamin B12, folate and vitamin D are not high enough. I don't mean going by the NHS ranges either, as they are ridiculously wide. Ferritin really needs to be at least 70-90 in women, B12 above 500 and folate in the upper half of the range. If your levels are lower than this, chances are you are not using the thyroid hormones very well. Lower levels of these can also cause symptoms themselves.

    I would strongly recommend that you get the above tests if your GP will do them. Don't expect him to treat unless your results come back below the NHS ranges, however you can (and possibly should) supplement yourself if your levels are low-normal.

    I hope that helps

    Carolyn x

  • Hi Carolyn

    Thanks for this info. I have had my Vit D tested when I was being investigated for Lupus (it was fine) but I have just started taking a Vit D3 supplement and a vitamin supplement that includes B12. I have felt a little better since starting to take this a few weeks ago (significant maybe?). My ferritin was done at the same time as my TSH and came back normal at 28ug/l (11-307). So I need to get my T3 tested and my thyroid antibodies tested, is there anything else - how would it show up that I wasn't using my thyroid hormones well? I have had a positive ANA (anti-nuclear antibody) in the past (hence lupus investigation) which was 1:100 - could that be related to the thyroid antibodies? Sorry, lots of questions!!

  • That test is inaccurate. The 24 hour urine test shows up clearly what the level of hormone is at the cell level doe its work. For example, the test says my t4 i17.9 and my t3 is in the middle of the range. However, the urine test shows that my t3 is quite low and my t4 is very low. I am not converting the hormone properly. docs are generally clueless and if the beloved test does not show a textbook result they will not treat you regardless of symptoms or else they dole out the diagnosis of CFCs/me/fibromyalgia which is just a description of a set of symptoms. a year ago I had the symptoms of fibromyalgia, but they have mostly disappeared after treatment with natural thyroid hormone. You need treatment.

  • Ooooh that's really interesting about your fibromyalgia. So I should ask for a 24 hour urine test on my T3 and T4? And what is the different between the Serum Free T4 level I describe above and the Serum TSH - is this one not the T3? It is all very confusing!

  • I would like to say thank you to everyone who has taken the time and trouble to answer my questions. As you can see I still have lots of questions but it is good to know that there is more I can ask my doctor to do - I like to be armed with exactly what I want to ask before I go in! I am monitoring my temperature every morning now too (had two days at 36.7 so only just over the range of normal). Plus the hair loss on my legs and the weight gain the evidence is stacking up - not to mention I have felt a little better since taking vit d and multi vit supplement. Thank you again. MPX

You may also like...