Still not feeling well following RAI in January

[Todd]

Hello all. Am really struggling following RAI treatment in January and would welcome any advice.

I was diagnosed with Graves 7 years ago and prescribed Carbimazole for 1 year and my Endo then stopped it and said to 'wait and see'. I relapsed and he suggested RAI which I resisted. I then took Carbimazole again and although my symptoms improved, I never really felt well. After quite a lot of pressure, I had RAI and by end Feb I was put on 100 Levothyroxine

Results have been:

15/2 T4 24.6 TSH 0.01

21/3 T4 13.8 TSH 5.7

11/4 T4 10.2 TSH 14.4

19/6 T4 18.6 TSH 3.3

22/6 T4 16.0 TSH 2.4

5/9 T4 23.8 TSH 1.1

Serum thyroid peroxidase antibody concentration > 600 IU/mL [< 34.0]

25/9 T4 25.7 TSH 0.17

I saw my Endo in September and he told me to continue with 100 Levo which I queried as I was feeling really unwell. He told me to continue until my next review in six months time. Following this I saw my GP and told him how rubbish I was feeling (most of the Graves symptoms but in addition swollen ankles and weight gain) He did another blood test and expressed surprised surprised at the change in just over two weeks. A further test was done 3 weeks later which showed a further increase in T4 and reduction in TSH. He has now reduced my Levo to 75 and I am to be re tested in six weeks. I am really wondering if I am ever going to feel better.

Thanks

[Todd]

Thank you so much for replying and I certainly wonder who's benefit RAI is for!!!£

Excuse my ignorance but is T3 Serum free triodothyronine? if it is then mine was 4.35 on the 5th September, Also what is NDT? I just feel at the moment like it is only my test results which are considered rather than how I am feeling, which is grim.

[Todd]

Thanks for that. The road block seems to be both my Endo and GP tell me that taking Levo is the only way to go and it's just a matter of getting the right level. Does you know where one can find a health professional who will be open to different options. I just feel like I have lost the last seven years to this horrid disease.

Regards

Todd

[greygoose in reply to Todd]

Excuse me for butting in, but I think your GP and endo are wrong. You didn't give any ranges for your results - please, always give ranges - but your FT4 looks high and your FT3 low. So, that means that you can't convert your FT4 (levo) into T3. And it's low T3 that causes symptoms. So, you do need to reduce your levo, but add in some T3.

[Todd in reply to greygoose]

Thank you for replying and the more advice the better. Is T3 something that can be prescribed by GP/Endo? Also, sorry about not giving ranges, must confess have found it hard to get my head around all the different tests etc.

[greygoose in reply to Todd]

It is very, very hard to get T3 prescribed by anybody - more so if you're in the UK. You'll probably have to keep nagging about it. Normally, I would suggest you buy your own, but that is getting harder and harder, too.

[Todd in reply to greygoose]

I suspected that this might be the case. Ideally would like to find an Endo who is receptive to managing my condition even if I buy abroad. I understand that prices in Greece are a lot lower and have family living in the US so maybe could look to get it from there.

[greygoose in reply to Todd]

Yes, T3 in Greece is much lower. But, it's also prescription only, now. And I really don't think you can get T3 without prescription in the US. Used to be able to get it from Mexico, but they are out of stock, and have been for quite some time.

[bantam12]

Do you think the Graves is kicking in again ?

[Todd in reply to bantam12]

Hello and thanks for replying. It's really has been feeling that way, have had lots of the Graves symptoms but the swollen ankles and weight gain have only happened started since the RAI. The only way I can describe it is feeling like my body is at war with itself.

[bantam12 in reply to Todd]

If your T4 is rising and TSH dropping it's a bit suspicious.

[Todd in reply to bantam12]

Indeed

[pennyannie]

Graves Disease is an autoimmune condition, and as such you have it for life, your thyroid was the victim, not the cause.

It is essential that you are monitored on T3 and T4 blood tests and not solely on a TSH read that serves no purpose once you have had RAI.

You have " killed off " a major gland, that produced approximately 100 T4 + 10 T3 daily.

In my opinion this should be the base line replacement for people like you and me.

Currently, you most probably will have to pay for the correct blood tests and also the T3.

Most people feel well when their T3 and T4 are balanced, working on a ratio of 1- 3.5/4.00.

Your other option is to switch to NDT - pig's thyroid - containing as similar a mix of hormones as to your own.

Either way, you may find resistance from your NHS doctor and endocrinologist.

You will need to read up all you can,

Elaine Moore - Graves Disease - A Practical Guide - there is also a website :

Dr Barry Durrant- Peatfield - Your Thyroid and how to keep it healthy - I know, sounds

silly, since your haven't now got a thyroid, but a must to read and follow :

Barbara S Lougheed - Tired Thyroid - Hyper to Hypo to Healing - Breaking the TSH rule :

There is also Prof Toft's - Thyroid hormone replacement - a counterblast to guidelines :

which you should be able to print off from here, once you find it ! Sorry don't know

how to do that for you.

It's a massive learning curve, and you might have to take a stand and self medicate.

No one would choose this option, but sadly, currently, we don't seem to have any treatment options to Levothyroxine.

I tried to obtain the appropriate hormone replacements, through the relevant NHS channels but with no success. Graves Disease thrives on anxiety and stress so not to upset myself any further I am now trialling NDT and am quietly confident.

Fingers crossed, start reading !!

[Todd]

Thank you so much for such an informative and detailed reply. Looks like I need to do a lot of reading!!! What amazes me with this condition is that you can visit a GP or Endo and come away with only a fraction of the advice and treatment to manage this horrible condition. It just seems utterly crazy that at a time when you are feeling at your worst and really struggling that you have to resort to self medicating from abroad and fighting to get the appropriate blood tests etc. Since my radio iodine treatment I have received no advice regarding diet, the need to check vitamin levels or T3, basically just told to take Levo and if I complain of symptoms or side effects then it is implied that it is my fault or imagination. Bonkers