Hypothyroidism symptoms but 'normal' TSH level. What next?

Can someone with some knowledge/experience give me an idea of whether I’m barking up the wrong tree with hypothyroidism? My case is a little complicated. It answers a lot of my symptoms but I’ve hit a brick wall over diagnosis. I don’t want to push my GP for further tests or pay for private tests if they’re likely to waste time, effort and money.

In brief.

Suspecting that my symptoms were the result of hypothyroidism (see below) I tested my temperature and got low readings (oral basal temperature of 96.7F/35.9C and afternoon peak of 97.8F/36.6C). I also discovered that a brother was diagnosed with hyperthyroidism 25 years ago, had part of his thyroid removed and now takes Thyroxine for the resultant hypothyroidism. However, a blood test has just given me a ‘normal’ Serum TSH level of 2.53 (the Dr’s assistant said “the GP had said that the tests were normal, that’s all that the test gave” and I couldn’t get any more info then with no dr present) and I’ve got myself confused over all the info on the internet that the test is unreliable. I could try again this weekend to get more details but I struggle with brain fog.

Symptoms.

My main symptoms, some of which may be due to something else, are as follows: tiredness, sleepiness, high cholesterol, feet and hands get very cold quickly, weight gain around my waist despite exercise and healthy eating, muscle cramps and aches, and brain fog. I also have restless legs syndrome that some people say might be linked to hypothyroidism.

History.

I’m a man in my late 50s, 5’7” and 11 stone, who has often felt unusually sleepy/tired for week or 2 at a time since I was 20. I’ve always kept myself physically fit and eat well. Then 3 years ago when I was under a great deal of stress (divorce, work pressure, unexplained pain) I began to feel very tired and sleepy, particularly in the afternoons; I had great difficulty thinking at work, which was unfortunate as my work is mostly analysis/thinking, and I had ‘I just can’t cope/struggle any more’ breakdown. I was diagnosed with depression; pills (Effexor then Imipramine) and rest started to sort the depression but the tiredness/sleepiness remained, albeit reduced by lashings of Provigil, until I ran into a brick wall: I had excruciating pain in my face from the site of an old injury/operation that was eventually diagnosed as atypical facial pain (ie we doctors don’t know what it is, but it’s real and probably caused by the brain misfiring). Imipramine and the pain killer Neurontin/Gabapentin keeps the pain tolerable but I’m still left with debilitating sleepiness, tiredness and brain fog that stops me from working. The constant battle against tiredness and sleepiness also makes me vulnerable to depressive thoughts and the ‘normal’ result has knocked me back a bit. I ruled out the medicines causing the tiredness/sleepiness after varying their levels and notng that the sleepiness/tiredness probably preceded them.

25 Replies

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  • StillStriving I don't think you're barking up the wrong tree at all. Your symptoms do sound like hypothyroidism, and as your brother has thyroid disease it's very likely that you do too.

    Your GP probably wont do all the necessary tests (not without a great deal of persuasion anyway). These are the tests you need

    TSH

    FT4

    FT3

    TPO antibodies

    TG antibodies

    Vit D

    B12

    Ferritin

    Folate

    For £99 you can find out for definite if you have hypothyroidism and whether you have deficiencies in any of those very important vitamins and minerals. An easy, at home fingerprick test will take care of that bluehorizonmedicals.co.uk/T...

    It's hard to say from just a TSH of 2.53 (and we really need the range for that) but your thyroid could well be struggling. The other tests will help you/us understand what is going on. No doctor is going to diagnose hypothyroidism with that level of TSH anyway. It would need to be seen to be rising over two or three tests, and probably need to reach 10 before any diagnosis is given and treatment started. You could very well be better off taking things into your own hands. The private test results may not be accepted by your GP but could be used as leverage for him to do further testing for you.

    If you get the tests done, please make a new thread with the results, include the reference ranges, and members will offer advice and suggestions.

  • If your thyroid is struggling you could buy sea kelp which maintains normal thyroid levels. I've heard low iron can attribute to headaches which could be the cause of the foggy head. How are your bowl movements? Slow bowl movements and constipation can also indicate insufficient thyroid hormones.

  • Angelic69 and StillStriving Noooo, don't supplement with sea kelp. You need to know if you are deficient in iodine before supplementing with anything that contains iodine. Too much iodine is not good for us (and, of course, neither is too little). Alwlays test to know your level before supplementing with it. Iodine is so readily available in our diets - non-organic milk, yoghurt, cod, haddock, are all good sources of iodine.

  • If on thyroid treatment either t3 or t4 or conbined you are basically taking iodine. Would you not agree?

  • Yes, and because you're getting some iodine in your thyroid meds (and from diet) that is why you shouldn't take an iodine supplement unless you have a known deficiency. Even if you're not on thyroid meds, you need to test and see if you're deficient before taking iodine. Too much iodine causes problems, as does too little.

  • Strange that in the list of ingredients for thyroxine I dont remember seeing iodine though. And In fact my last box doesn't even have a list of I grediants. Is that legal.

  • Well, iodine is not actually an ingredient so won't be listed. Others know how to explain it better than me as I don't really have a scientific brain, but I'll quote a recent post by humanbean

    "Thyroid hormones, natural or artificial, NDT or T3 or levothyroxine, are molecules made up of several atoms. Amongst those atoms is iodine.

    T4 is called T4 because each molecule of it contains 4 atoms of iodine.

    T3 is called T3 because each molecule of it contains 3 atoms of iodine.

    You can't have thyroid hormones without iodine. If you removed the iodine from any thyroid hormones they would no longer be thyroid hormones..."

    The ingredients for mine (Actavis) are in the Patient Information Leaflet.

  • I'm confused? Isn't or wouldn't iodine be an essential ingredient? For replacement therapy.

  • Why would iodine need to be an added ingredient?

    You are getting some iodine in thyroid hormone, as explained in the post I quoted from Humanbean.

    If one is deficient in iodine, it needs to be supplemented under the guidance of an experienced practioner, it also needs to be balanced with selenium.

    It's quite a contensious subject, but supplementing iodine without testing is risky, as I said too much is as bad as, if not worse, than too little.

  • If your replacing something that your body isn't making because of variable reasons. And that something (thyroxine) was made of certain Ingredients I would personally expect to see that substance listed on the ingredients list of the replacement. t

  • But iodine is not an ingredient in thyroxine, not an added ingredient. It's naturally occuring in the molecules of T4.

    There is iodine in cow's milk, but you wont find it listed on the label as it's not an added ingredient. Same for yogurt, cod, haddock and other food stuffs that are naturally high in iodine.

  • How does this natural occurred principle work. Because when I make something in the kitchen like cake I have to add all the IngrediantsI for the magic to work. What magic is this. Tell me step by step of elements that amount to the production of t3 and don't forget the enzyme's.

  • I did say in my post further up that I don't have a scientific brain and that the explanation was within the post by Humanbean that I quoted.

    If you want a detailed, scientific explanation then you'll have to do some research.

  • If you buy a bottle of water, do you expect it to say "hydrogen" and "oxygen" as ingredients?

    You shouldn't - because the substance is put into the bottle as water (H2O). Not as two separate ingredients.

    In the same way, levothyroxine is a well-known, defined substance with the formula:

    C15H11I4NO4

    (Sorry - that won't be wonderfully clear, have a look here for much more information:

    pubchem.ncbi.nlm.nih.gov/co... )

    There is a limit to the level of detail that can reasonably be achieved.

    At the level of making tablets, levothyroxine is bought in and is itself an ingredient.

    At the level of making levothyroxine, ingredients might include tyrosine and, yes, iodine.

  • Yes have you ever watched the movie arsenic and old lace. Well maybe you should. We all ate beef but it turned out to be horse. Ingredients are extremly important. I personally would t sell a product if I hadn't made it from scratch and could list the ingredients and know how they react. Pharmacist s carnt do that anymore because new RUles so they hand out stuff that for all we know is horse white. Aren't you concerned. PEOple are taking levo and are getting sick. If they are allergic to a substance they could check the Ingredients but if it's been mixed with something else like water and and is only then classified ax water that is a problem.

  • I think you are being ridiculous.

    You can't define every ingredient you put into your cake at the level of every atom.

    There are purity standards for things like water as a pharmaceutical ingredient.

    Things like levothyroxine and liothyronine are not assembled from individual atoms, nor even each element, but from pre-existing molecules.

    And do remember that it wasn't that long ago that even the current ingredient lists were not required.

  • Okay where are these pre-exzisting molecules extracted from.

  • Tyrosine, which seems sometimes to be used as an ingredient in making levothyroxine:

    L-tyrosine and its derivatives (L-DOPA, melanin, phenylpropanoids, and others) are used in pharmaceuticals, dietary supplements, and food additives. Two methods were formerly used to manufacture of L-tyrosine. The first involves the extraction of the desired amino acid from protein hydrolysates using a chemical approach. The second utilizes enzymatic synthesis from phenolics, pyruvate, and ammonia through the use of tyrosine phenol-lyase. Advances in genetic engineering and the advent of industrial fermentation have shifted the synthesis of L-tyrosine to the use of engineered strains of E. coli.

    en.wikipedia.org/wiki/Tyrosine

    It gets progressively more difficult to find out as you go back along the chain. And almost certainly the last factory in the chain will not know every detail of every antecedent step.

  • im trying to say is if I ate a plate of food then got sick i would want to know which item it was so I could avoid it. Plain and simp!e.

  • Actually, the TSH is the one test you don't need the range for. A TSH of 2.53 means that your thyroid is struggling very hard. BUT, there could be other reasons for it being high, so - as Susie says - several more tests need to be done to see if it stays that level or gets higher, or goes down.

    The high cholesterol is a bit of a give-away, there. It very often mean you're hypo - if not always. But, it is of no importance in itself, so don't be tempted to take statins!

    The restless leg could be due to low thyroid, or low iron, or low magnesium. And, as low thyroid causes low iron and low magnesium... draw your own conclusions. You wouldn't want to take iron without testing, but you could try magnesium, without testing. Tests are not reliable, and most people are deficient, anyway. So, just try taking some. Lot's of information about magnesium on her if you use the search box at the top. :)

  • StillStriving - I would strongly recommend obtaining a copy of your medical records, you're legally entitled to this. Details here:

    nhs.uk/chq/Pages/1309.aspx?...

    You need to go through them with a fine toothcomb especially blood test results. Many of us have found that our GPs have claimed results are 'fine' when they're clearly not by being right at the bottom of the range or, worse still, not in the range at all. In my case I believe that some GPs didn't even look at them or even understand them hence their many mistakes that left me ill.

    We all need to be proactive with our health and you've already been given some good advice.

  • Thank you, all. That's a great help and I'll order that Blue Horizon test now. I've felt really rough today and you've cheered me up.

    As an aside, I missed off the question of eyebrows. My outer third is very short, thin and sparse compared with the rest.

  • have you had your b12 and vit d tested also ferritin, l also had a tsh of 2.5 l got a medichecks test for t3 and t4 and they came back normal they were very low range normal though so theres no way a doc would even consider treatment, all my vitamins above were deficient though and l am feeling better for the treatment for these lm no longer wanting to sleep all afternoon and brain fog has lifted a bit l have got a chunk of my life back, always get results and ranges l never used to but know now to ask lots of people on here will help and there is the pa site if your b12 is low good luck

  • I'm hypo and ended up in a and e on several occasions after starting statins. I've been on all of them and they all made me very I'll. Ezetrol is much safer or was for me but apparently some GPS don't like iperscribing them? Another great way to reduce your cholesterol is with omega miix which is a form of good cholesterol and counters the bad in a safe way.

  • Again, thank you, all, for your help.

    I've just sent off my Blue Horizon sample - the kit arrived the next working day, looked very professional and was easy to use - and I'll post the results in a new thread when I get them.

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