Return of symptoms after 15 years on T3/T4

I was disagnosed with Hashtimotos in 1998, B12 deficiency in 2001 and Sjorgren's in 2006. I have been treated for about 14 years now on combo T3/T4 by my endo - and other than sinus problems and the menopause - I have been pretty darn well .... until May 2015. Nothing I can identify has changed but I have had a return of all the horrid symptoms I had when I was first introduced to thryoxine all those years ago - night 'attacks' when it feels like my thyroid is vibrating, horrendous fitful and unrefreshing sleep, golf ball in my throat, puffy eyes - the list goes on & on. I was treated in 1998 like I was 'nuts' upon reporting these symptoms - only to find through very recent research that there are other hypothyroid individuals like me who had terrible trouble being introduced to thyroxine (in the end I had to start on 12.5mcg every other day until it eventually built up to the required dose) and awful symtoms of both hypo and hyper and these dreaded night time thyroiditis attacks (Dr S Langer's book). I cannot tell you now 'relieved' I was to read about them as I now know it's not just me! I am devasated to be back where I was - no one more shocked than me - but I am struggling to know where to go and what to do - my endo took more blood tests in May - told me they were Ok - to go on holiday and relax and go back for a follow up in November! I am going to my GP tomorrow as I feel absolutely terrible and want to get sorted - maybe more bloodtests - and to go about it the right way to get the GP to listen to and treat my symptoms as well - maybe even isolate the cause. I just improved over time last time - so don't know the cause then or why this is happening to me now after 14/15 years. I reduced T3 intake straight away in May - but the problems persist and if anything are worse now. I actually feel cold and have hypo symptoms and a fuzzy head, especially as the day goes on - and yet I seem to have the hyper or at least hyper sensitive issues I had when thyroxine was intrduced to me in the late 90s!

Any and all advice would be greatly appreciated - first time around in 1998 I didn't consult a forum at all - but it was through advice from a forum that my own B12 deficiency became obvious - so I know the power of like-minded people with similar issues banding together. Thank you

5 Replies

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  • Most probably its the levo thyroxine or T3 itself or the fillers that's causing trouble

    they use all kinds of rubbish in processing the stuff and may people are allergic to the fillers the worst of which is Acacia so if you have hay fever it will make you ill

    You might be chemically sensitive to minute amounts of solvents like methylated spirits , turps, petroleum products

    Believe it or not they get used in the making of the pills

    Maybe like my lot you will be far better on NDT

  • If it is UK T3 you're taking, maybe they've changed the fillers/binders yet again causing your symptoms to return.

    If your GP/Endo is willing to prescribe an 'unlicensed T3' although they are Brands in other countries they're not licenced in the UK as MP T3 is. They might well be better.

    thyroiduk.org.uk/tuk/

    They will also be cheaper.

    If you've been taking the same levo too, it might be sensible to first try to change the T3 and after a few months and still having problems, switch your levo too.

    Can you get a print-out of your blood test results with the ranges and post them on a new question for members to comment on them. In future have the earliest appointment and fast (you can drink water) and take hormones afterwards. Also leave approx 24 hours between last dose of hormones and the blood test.

    If you've not had B12, Vit D, iron ferritin and folate tested recently ask for these to be done.

  • HashiB12Sjogrens, 'OK' results aren't necessarily optimal. Can you post the results and ranges (figures in brackets after results) and do you have a result and range for ferritin?

    Low ferritin and peri/menopause can disrupt previously stable thyroid levels so ask your GP to test. Ask for vitD too if it hasn't been tested in the last 6 months.

    Leave 24 hours between taking T4+T3 and thyroid blood draw.

  • Many Thanks

    Saw my GP today and he really listened - agrees hashimotos can be complicated to treat for some individuals! Phew! Says he would prefer my TSH to be lower - to be fair for the last 15 years it was reported as <0.05 and I never had any hyper symptoms even when my Ft3 was higher than the 'normal range'. I gave my Gp an article highlighting 'thyroiditis attacks' and hypersensitivity to the introduction of thyroid meds - and he was very supportive. Looks like all this recent mayhem might actually be the cumulative effect of having T3 reduced from 10mcg 3 times a day (+50mcg T4 once a day) to T3 x10mcg x twice a day over a year ago. And of course when all hell broke loose in May 2015 - T3 was reduced further to 10mcg x1 once a day - and I am not only no better - but actually worse. Sooooo - baseline blood tests planned for next week - will report back once results back. Gp supportive of me not being passive and waiting for my endo to follow up at the end of November. Latest blood work 21 May 2015 (not all show ranges sorry):

    TSH 0.14 (0.3-4.7)

    FT3 4.0 (3.5- 6.5)

    FT4 9.6 (9.5-21.5)

    Vit D 89 (>50)

    HbA1c 38 (<42)

    Urea 6.9 (2.5-6.4)

    Na 142 (135-145)

    K+ 4.3 (2.5-6.4)

    Creat 87 (65-120)

    adj Ca 2.4 (2.12-2.6)

    ESr 7

    Hb 140

    R Cortisol 175

    LH/FSH 81/150

    Adrenaline breakdown products(?) - negative

    once again - many thanks

  • Hashi, TSH 0.14 is low but suppressing TSH can suppress Hashi attacks. FT4 9.6 is bottom of the range and FT3 4.0 is low in range. You need a dose increase to raise FT4 and FT3 and to suppress TSH. Ask GP to test ferritin, B12 and folate when s/he tests thyroid next week. Leave 24 hours between thyroid meds and blood draw which should be fasting, except for water, and early in the morning as TSH is highest early and drops after eating.

    VitD is in the replete range 75-200.

    100% Gluten free diet is helpful in managing Hashi's and can reduce antibodies.

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