Advice on blood tests. I had RAI treatment for Graves 4 years ago

[R2d2c3po]

After my RAI I was on 100mg levothyroxine, felt ok, energy levels lower but I put up with it. My TSH was <0.02 and I saw a new GP who felt I was over medicated. So I alternated 100/75 so my dose was 88 mg. I put on a stone and started getting out of Breath on exhersion and my legs ached. I then went to Australia for 9 weeks. Not sure if it was the heat but I put on nearly another stone due to fluid retention all over. I struggled to breathe and found it hard walking uphill. I checked into A&E in Sydney but all my blood tests were normal, one doctor thought the non pitting oedema might be due to hypothyroidism but my TSH was 0.7 normal. Back in the UK and I lost the fluid over a few weeks but decided to use medichecks to get some blood tests. My normal GP is sympathetic so I need advice on what to suggest to her with these results. Do I increase the levothyroxine or add T3 ( i’ll Get it from Germany if necessary). Everything is in range but I think at the wrong end.I know some suggest TSH should be about 1 but I think it may be different for Graves patients? I think my freeT3 is too low but also my free T4 is lowish. My reverse T3 is high. What do you think?

TSH 0.369 mIV/L. (0.27 - 4.2)

Free thyroxine 15.4 pmol/L (12.0-22.0)

Free T3 3.67pmol/L. ( 3.1-6.8)

Reverse T3 23 ng/dL (10-24)

Reverse T3 ratio 10.39 (15.01-75)

Update on my bloods

I increased my thyroxine to 100 per day and then did my bloods 2 months later.

TSH 0.146. (0.27-4.20)

Free thyroxine 19.50 (12.00-22.00)

Free T3 4.25 (3.10-6.80)

Reverse T3 25 ( 10.00-24.00)

Reverse T3 ratio 11.07 (15.01-75.00)

So my TSH is suppressed my T4 is good in the upper half but my T3 is still too low and my reverse T3 has also gone up. Went to see my sympathetic gp who said our health region is also discouraging NHS access to T3 (I see this was debated in the House of Lords last week) she is happy to give me a private prescription to trial for 3 months.

So I have some questions

1/ what dose of T4 and T3 should I ask for

2/ is there a problem with shelf life if T3

3/ should I split tablet and take through the day

4/ can you message me the German chemist that takes private prescriptions

[greygoose]

I doubt your high-ish rT3 has anything to do with your conversion, because your FT4 isn't even mid-range. Are you on a diet? Do you have a bug of some kind? Low nutrients? High cortisol?

I think you need an increase in levo, despite your low TSH. But the TSH is irrelevant once you are on thyroid hormone replacement. Unless it goes high. And, as you've had Grave's, the chances are it won't ever go high. So, your doctors should not be using it to dose by.

Taking T3 would, no doubt, make you feel better, because your FT3 is so low. But, possibly an increase in levo would do the trick.

[R2d2c3po in reply to greygoose]

Thanks for advice. I am watching what I eat as weight gain a problem since RAI treatment but trying to eat well balanced diet, haven’t had a bug, no idea about cortisol. Gp tested vitamins haven’t seen those results yet. Already increased my dose of T4 back to 100mg to see if it helps in the first instance. Having seen these results I will always do my bloods privately as NHS trust here will only test TSH for patients post RAI.

[greygoose in reply to R2d2c3po]

You're welcome.

[Kell-E]

Your rT3 is high for your fT4 being in the bottom third of the range. fT3 is low. Classic conversion issue.

If you increase levo you will increase rT3 also. Your body is already preferentially converting to rT3, sending the message that it has more T4 than it wants. I think it would make sense to add T3 and reduce levo.

[R2d2c3po in reply to Kell-E]

Thanks for your advice. I have increased Levo back to100mg so will test again in 8 weeks to see what that does, then probably try to add T3 with reduced T4 just to see what Is best for me

[Kell-E in reply to R2d2c3po]

And like some of the other replies have suggested....there are things to check on that impede conversion. It is best to get to the bottom of it, but sometimes there is just nothing you can fix and you need some T3.

[SlowDragon Administrator]

You need to check your vitamin D, folate, ferritin and B12. You very likely under medicated and then low vitamins are very common

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 ask for 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.

Your FT3 is clearly too low

Note Prof Toft's comments on current inadequate treatment following thyroidectomy or RAI

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

[R2d2c3po in reply to SlowDragon]

Thanks for your advice. The Gp did my vitamin tests on NHS, I have yet to see those results. Our NHS trust only allows TSH to be tested for post RAI patients so I did the thyroid tests privately. Going forward I will continue to do my tests privately to look at my T3 as Dr Toft suggests. I also feel my FT3 is too low. I am increasing my T4 in first instance the will test again and then probably try T4/T3 combo yo see what works for me. I wouldn’t have had RAI had I known all this!

[SlowDragon Administrator in reply to R2d2c3po]

You are legally entitled to copies of your own blood test results so make sure to get actual results and ranges

[R2d2c3po in reply to SlowDragon]

Will go on to get the NHS results from the surgery once the snow goes to have the full picture to take to my GP

[R2d2c3po in reply to SlowDragon]

Hi, I now have my vitamin results. All in range but is there an optimal level? I.m wondering if folate and ferritin should be higher maybe?

Total vitamin D (serum) 54nmol/L adequate is > 50nmol/L

Serum Folate 4.4 ng/ml range 3.00 - 18.00

serum ferritin 91 ng/ml range 20 - 350

Serum vitamin B12 705 ng/l range 200 - 960

I gave a printout of Professor Toft's "counterblast to current guidelines" to my GP surgery and also to my son who has just qualified as a doctor and has taught the T4 only treatment!

[SlowDragon Administrator in reply to R2d2c3po]

Your vitamin D is too low. Most thyroid patients need it at least 70-80nmol and just over 100nmol may be better

Test twice yearly via vitamindtest.org.uk £28

Better You vitamin D, mouth spray avoids poor gut function, so many find it good. Perhaps try 3000iu for 2-3 months and retest

Folate is on low side, but B12 is very good. Do you supplement B12?

Folate rich foods will improve folate levels, or you can supplement a good vitamin B complex

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

[R2d2c3po in reply to SlowDragon]

Thank you for your advice. No I’m not currently taking supplements though I have needed vitamin D in the past. I will start again with that, tablets don’t affect my stomach. I will look to my diet as you suggest for folate. Thanks again for your advice.

[ShootingStars]

What are your antibody levels? Antibodies can interfere with conversion. It is also possible to have both Graves and Hashimoto’s antibodies. Have you ever been tested for TPOab and TGab, for Hashimoto’s? If your antibodies are high, looking at what is driving those high levels is important. Diet is often a huge contributing factor.

Have you tried the recommended diet for autoimmune diseases: gluten, dairy and soy free?

[R2d2c3po in reply to ShootingStars]

No I didn’t get the antibodies checked as I thought it wasn’t needed as I had been diagnosed with Graves. I haven’t yet tried changing my diet. I am going to change one thing at a time, to control the variables (the scientist coming out in me!) thanks for your advice.

[SlowDragon Administrator]

Post RAI patients can still benefit from gluten free diet. Certainly worth a try

Definitely soya free helps for anyone on Thyroid replacement hormones. (Including soya lecithin if possible)

[Espisnowwoman]

Do u still haves graves?

[R2d2c3po in reply to Espisnowwoman]

I don’t think you stop having Graves but as I no longer have a thyroid I don’t feel the effects. I now have to take thyroid hormones for life. I started on carbimazole before RAI treatment but kept getting overactive when they tried to reduce the dose. So then went on block and replace treatment for2 years on high dose carbimazole with thyroxine replacement by kept going overactive every time they tried to stop it. They don’t like leaving you on this treatment but I wish I had stayed on this longer as I felt better than U do now I have no thyroid

[Espisnowwoman]

Wow. I refused rai.