Help !!

[wendypartridge]

after my last thyroid test .. I lowered the dose of levo to 125/100 every other day and on sat and sunday I took just a hundred , so 6 weeks later i get my blood test back and i am shocked to see my t4 has jumped to 18 (9-19) even though i reduced the amount of levo . My tsh has continued to drop it is now 0.67 (0.3-5) and my t3 has also dropped to 3.00 (2.80-5) I know i am not converting t4 to t3 very well at all, I have been feeling hyper yet tried ... It is over 18 months since I had RAI why would my t4 rise when i reduced my t4 and my TSH has continued to drop. I feel dreadful .. doctor says all are in the normal range but I am not shocked really because i felt it , I began starting to feel hyper ,, can someone advise me, please

[SlowDragon Administrator]

If you lower the dose (and become more hypothyroid) very often vitamin levels get worse and conversion gets worse too

Low stomach acid is common when under treated, then low vitamin levels result

Have you had vitamin D, folate, ferritin and B12 tested?

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Also request list of recommended thyroid specialists, some are T3 friendly

Professor Toft recent article saying, T3 may be necessary for many otherwise we need high FT4 and suppressed TSH in order to have high enough FT3. Note especially his comments on current inadequate treatment following thyroidectomy or RAi

rcpe.ac.uk/sites/default/fi...

You might also try strictly gluten free diet. Several people on here post RAI have found it beneficial

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[wendypartridge in reply to SlowDragon]

my point is that i lowered my levo and yet my t4 is rising and tsh dropping

[SlowDragon Administrator in reply to wendypartridge]

Possibly because vitamins are dropping. Then conversion gets worse.

[beh1]

Hi Wendy. I would strongly advise you to press doc to refer you to endo. Your conversion of t4 to t3 is (as you say) poor. Some people with no thyroid need the addition of liothyronine in order to feel well. I agree it’s frustrating and confusing that your t4 level has increased following a reduction in levothyroxine but your poor body is obviously struggling to run on levothyroxine alone. Put some pressure on doc. Tell him how awful you feel.

I’m under a wonderful endo and take levothyroxine and liothyronine so I know it works. I think they have lists of good ones on Thyroid Uk, but I just got lucky on a normal nhs referral. Keep pushing until you feel well.

[wendypartridge in reply to beh1]

Thank you beh1 ..i will talk to my doctor on Thursday, I will ask to be referred.I hope he will refer me as I really feel ill with the T4 only. I saw him 3 weeks ago as i was having odd feelings (of course it was not related to my thyroid ) I am very confused but fighting to stay sane . I was wondering if i should go back to 100 a day of levo because i don't see the point of pouring t4 into my body when it's not converting to t3, thank you for your reply

[beh1 in reply to wendypartridge]

It’s a difficult one to work out. But, yes your t3 has dropped, probably because your tsh has dropped. But I’m not medically trained and your gp’s knowledge of this will be limited too. He is used to doling out levothyroxine until the tsh is in range and that’s all! I would really press for endo appointment and in meantime do whatever made me feel best. Listen to your body. If you felt better on 100 mcg levo, and your t3 and t4 were in range, try that.