I've had problem with my thyroid for years but it's still so confusing!
My doctor wants to reduce my Levo as thinks I'm over but I still have all the symptoms of under.
She's also very confused that my TSH is supressed but my T3/T4 are under or borderline.
I take 50mcg of Levo and 60mcg of Thyroid S (not declared this to the doctor and they think I just take 100mcg of Levo.
TSH 0.08 (0.3-5.5)
T3 2.7 (3.1-6.8)
T4 12 (12-22)
Peroxidase antibody 38 (0-34)
I'm happy to reduce my dose if that means my TSH will recover and start producing more T3/T4 but I'm worried my symptoms will get worse and my hair will start shedding - again!
Any advice would be much appreciated. She's agreed to retest in 2 months.
Written by
Topaz123
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I think you're going to have to 'fess up to the NDT. It's the T3 suppressing the TSH - although she probably won't understand that!
I'm happy to reduce my dose if that means my TSH will recover and start producing more T3/T4
But it won't. Probably not even if you stopped all your thyroid hormone replacement. You're hypo, that's why you started levo in the first place. Your thyroid is incapable of making enough thyroid hormone to keep you well, whatever your level of TSH. You have Hashi's and your thyroid has been damaged. It cannot regenerate.
What is really worrying is that you're taking about 88 mcg T4 and 9 mcg T3 and you're still hypo, with those low Frees. You need an increase in dose, not a reduction.
I think it might be a good idea to switch to NDT only. Or at least try that for six weeks and see how you feel. Stop the levo and two weeks later increase the NDT to 1 grain.
If your TSH has been suppressed for many years then it may never rise again, whatever you do, the HPT axis has been down-graded. Doctors do not understand that. In fact, they understand next to nothing about thyroid, or they wouldn't be so obsessed with the TSH. They have no idea what it is or what it does. But we cannot ruin our health and our lives just to keep them happy! They wouldn't do the same for us!
So do you think just take the 1 tablet of Thyroid-S a day for 2 weeks - so that would be 60mcg and then increase that up to maybe 1.5 tablets to 90mcg? (I've got a full jar of the 60mcg so don't really want to order more as the price is getting ridiculous)
Well in all fairness since your doctor does not know that you are taking NDT - rather than the 100 mcg T4 prescribed - she will likely be confused -
Is this a NHS blood test around 24 hours after your last dose of both the T4 and NDT as your T3 looks a little low -
but if this arrangement suits you I'd be inclined to just be honest and explain.
How is your ferritin level now - and your folate, B12 and vitamin D ?
Taking any form of thyroid hormone replacement containing T3 - will lower / suppress the TSH - and 1 grain NDT contains amongst other trace elements - 9mcg T3 + 38 mcg T4 :
The TSH was originally introduced as a diagnostic tool to identify if a person was suffering with hypothyroid and was not intended to be used as a means of monitoring or dosing anyone taking any form of thyroid hormone replacement.
Once on any thyroid hormone replacement we should be dosed and monitored on our Free T3 and Free T4 readings and ranges with the TSH being the least important reading :
I take NDT only and cancelled my T4 prescription for 125 mcg T4 so am not caught up in the blood test and having a TSH in the range scenario - and run my own blood tests and look after myself as in primary care most doctors only seem to be able to run a TSH reading with an occasional T4 - which doesn't cover the needs of those taking both T3 and T4 independently or together as in NDT.
I know - it's just they seem to get annoyed when you self medicate and they don't seem to understand the readings anyway! I've monitored my levels for many years with private bloodtests but I suppose I get a bit twitchy when they say I'm over especially as I still rely on them to prescribe the Levo.
Yes the blood test was 24hrs after any medication.
I've not tested ferratin or vitamins for a while but I do take supplements (B complex, B12 and Vitamin D). My ferratin was very low a few years ago which I think contributed to my hair loss.
Yes I looked back and why I'm asking about your ferritin -
Mine was ' found ' down at 22 and it took me over a year to get it anywhere near where it needs to be for optimal conversion of any thyroid hormone replacement.
Everywhere I researched suggested at least over 70 - and I know now I feel at my best with a ferritin at around 100 -
and aim to maintain my folate around 20 - active B12 125 ( serum B12 500++ ) and vitamin D at around 125 :
Once I was settled on Thyroid S - I wrote to my surgery to cancel my T4 prescription as I was not going to put myself through the TSH blood test - only to be told off - as my TSH is at 0.01 if I'm to be well - irrespective of what treatment option I take.
Yes I had a battle with the surgery as the first doctor refused to believe there was an issue.
I think I'll get all my levels retested so I can make sure they're where they need to be.
I might just stop the Levo as suggested by Greygoose and monitor it again myself.
I wish the doctors knew more and didn't just get spooked by the TSH. The information on this sites at least reassures me that I'm not causing myself damage by having a suppressed TSH.
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