Hi everyone. I had RAI a few years ago and have been on levo ever since. I still have hypo symptoms and my blood test a couple of weeks ago

came back as follows: TSH, 0.03, T4, 16.0, (T3 not tested), B12, 371, Folate, 10.6, Ferritin, 115. Doc says all normal so why do I still have hypo symptoms, cold, bloated, tired, hair thinning etc. etc, the list really is never ending. I really wish I'd never had the RAI because I could always tell when I was going hyper and meds used to correct it after a few weeks. I used to get back to normal. These days I never feel really well, not ill, but not right. Any suggestions?

17 Replies

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  • Please give the ranges for each of these enabling more accurate assessment.

  • Thanks for your reply. Did you mean the ranges according to the result forms?

  • Yes, always quote the ranges from the lab doing the tests. Labs differ in their ranges, so really, the lab-specific ranges are needed to judge where in its range each result falls.

  • Hi, the ranges were: TSH 0.01-5.00, T4 9.0-21.0), B12 150-900, folate 3.1-19.9 and ferritin, 25-340 Thanks, Val

  • Hi, thanks, in my opinion your T4 is too low being 7 up from the bottom and 5 down from the top, of the range. If you get Dr Anthony Toft's "Understanding thyroid Disorders", BMA publication, Dr Toft past president of the BTA, so not to be argued with by a GP, £5 from Amazon/chemists/Thyroid UK says on Page 88:

    Judging the correct dose of thyroxine.

    Typical results would be a FT4 of 24 pmol/l or TT4 of 140nmol/l and a TSH of 0.2mU/l. In some patients a sense of well being is achieved only when FT4 or TT4 is raised, for example 30pmol/l or 170nmol/l, and TSH low or undetectable. In this circumstance it is essential that the T3 level in the blood is unequivocally normal in order to avoid hyperthyroidism.

    The ranges relative to his statements are on Page 87. FT4 10-25, TT4 60-150 so you can see that if he recommends a FT4 of 24pmol/l in a range of 10-25pmol/l, that your T4, 16 (9.0-21.0) has some way to go.

    Your B12 and folate look too low to be at optimal levels necessary for thyroid action. You can supplement, but if your are going to have an Active B12 test done, then do not supplement now as that will skew the results.

  • Hi, thanks for reply. It's funny you should say that my T4 is too low because when I first went hypo after the RAI the levo dose I was prescribed put my level up to 24 after about three months and my endo said to stay on that, and I must admit I felt something approaching normal. After my next blood test GP said it was too high and reduced the dose!, This was some 8 years ago and I knew nothing about hypothyroidism then. The Levo was reduced to 75 and a couple of years ago I actually had to demand that it was raised because I felt so awful. GP said at 11 my T4 was 'normal' and was very reluctant to up the dose but after a bit of metaphoric table thumping he did increase the dose! I'm not sure if I will take the Active B12 test, but I will probably have the thyroid test to get my T3 level as that's never been tested as far as I'm aware. I think I might try to supplement the B12 as I think it probably is low - have you any suggestions as to what sort of B12 is best? Thanks. Val

  • First thing might be to dump that GP and find somebody else who will medicate you to the endo's standard or even refer you back to him/her When the GP first mooted reducing your dose you would have been within your rights to refuse citing the endo's standards. You still have a right to be medicated to the endo's standard. Either demand that the endo's recommendation be followed; or: require referral back to him/her; or: write to the endo for help; or: buy Dr Toft's book, photocopy Page 88, send it too GP. Pick the option which you prefer! Believe me, at 11, your T4 was really scraping along, as you know from the Dr Toft quotation it should be much higher.

    Be really sure you do not want to run the Active B12 test before supplementing B12. I do not think any GP would sanction B12 injections or investigations as to whether you have Pernicious Anaemia at serum B12 of 371. I could get nothing done though actually below the range. Although 371 is a low serum level, GPs are (mistakenly) perfectly happy with such serum levels which do not tell how much is Active B12, and they do nothing. So: Amazon has both Jarrow's and Swanson's (B12) methylcobalamin in tablet form in the Health and Beauty section. Get the tablets having 5000mcg (5mg) per tablet. You must buy methylcobalamin, do not take cyanocobalamin which is very inferior and in my opinion, useless. It is better to take methylcobalamin tablets sublingually so avoiding any possible gut malabsorption issues, the B12 goes straight into the bloodstream via membrane under the tongue. Probably 3 tabs daily for a couple of months would raise your levels considerably. B12 is non-toxic and any excess will be excreted through the kidneys. Take folic acid supplementation, 800mcg, at the same time as this B12 supplementation, but never take folic acid alone as f/a taken alone can mask the development of neurological damage if B12 becomes depleted. B12 supplementation will create new red blood cells, this creation uses up potassium so make sure you include potassium rich food in your diet - bananas, figs, blackstrap molasses.

    Dietary sources of B12 plus folate (natural version of folic acid)

    are chicken livers, lamb's liver, herring.

    Blue Horizon does an Active B12 test for around £67.

    myrios.co.uk does both serum B12 plus folate for around £30. Myrios gives result in pmol/l. Divide pmol/l by 0.738 to give ng/l if this unit is more familiar to you.

  • Could be your TSH is to low.

    I had RAI years ago and have found I can't manage with a very low TSH.

  • Hi, thanks for your response. How can I raise TSH without reducing the levo - that was increased a couple of years ago as I was even worse with lower T4

  • The TSH is a pituitary hormone, not a thyroid hormone. Since you no longer have a thyroid, the TSH is an empty figure. There is some thought that it may have some stimulating effect on the parathyroids but evidence is not conclusive.

    The figures you should be looking at are the Free T4 and Free T3. This will give you more information on your metabolic state, along with the symptoms that you still have.

    If you can get your T3 tested, it would be very useful. Have you considered a private test to get more information? If your GP will not or cannot test the T3 (some ask but the lab refuses - !) it might be worth considring. A home test which is a fingerprick (I have so far had two) gives you TSH. Free T4 and Fre T3 plus the ranges. It could give you all you need to know. It could be that you are not utilising the T4 in your system, or even that it is simply not enough, but without the ranges that is an unanswered question.

    If you think that it might be worthwhile, the link is here:

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

    I do hope you find this useful.

    Marie XX

  • Thank you Marie, I have been considering a private test, are they reliable? Val

  • Yes, they are. Many private consultants use them.

  • Your B12 is in the grey zone, so this could possibly be an issue. You could consider the active B12 test? Also might be worth checking vit D.

    Hampster

  • Hi Hampster1, how do I go about getting an active B12 test? The last test I had the Doc said she was covering 'everything', whatever that was!

  • Yes I think you did quite well to get those things tested, a lot of docs would only do an FBC. However, the serum B12 test measures all the B12 in your blood, most of which is in an inactive form. It also tells you nothing about what is going on at tissue level. Here is a link about getting the active B12 test:

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

    And here is an explanation of the test:

    biolab.co.uk/docs/vitaminB1...

    H x

  • Hi Hampster, think you may be right about my B12 being in the grey area. I have been looking at my blood results and I see that my Neutrophil count is low at 1.8 and on further (internet) investigation have found out that this can be caused by B12, Folate or Iron deficiency so maybe that's the answer. If it's low enough to affect the Neutrophil then surely it's low enough to cause other problems. You comments would be appreciated. Val

  • It's beyond my knowledge I'm afraid, but someone did say the other day on another question that a low white blood count can be due to B12 deficiency. My honest advice is that if you have symptoms of B12 deficiency then it needs to be properly discounted, and the serum B12 test just isn't sensitive enough. It's only good for identifying really ill people in a late stage of deficiency!

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