DIO2 positive result, blood tests all show improvement. Feel awful though??

[misslissa]

Hi, I had my results today I do have the Heterozygous variant result. I'm not entirely sure what it all means tbh, the counsellor was lovely but spent longer discussing me needing to be gluten free and being tested for other things as she thinks I have low level viral infections. (Not entirely sure why?)

Anyway, my understanding is that this means it could be harder for me to convert t4 into t3? But my latest results from blue horizon were

ft3 5.1 (3.1-6.8)

ft4 14.9 (11-23)

TSH 0.67 (0.35-5.5)

I'm on 100mcg levo and I honestly feel worse now than pre medication even though at that point my TSH was 6 and ft4 10.1

I've got loads of results now if they would help? Hope they are readable?

[misslissa]

Specific result says 'Heterozygous variant genotype TA' can anyone shed any light on this for me?

[TupennyRush in reply to misslissa]

Hi

heterozygous variant means you have one version of the defective gene and one of the non defective gene.

I had the same experience with the councilor; shE wittered on about gluten, tumeric and various other stuff without getting to the point about my Dio2 gene issue (I'm also heterozygous)

I spent a year on levo and felt better than I did before diagnosis but not well. I changed to ndt and after about 6 months my remaining symptoms had all cleared up. The big surprise for me was that my brain suddenly started working much much much better as I hadn't realised that I still had brain fog. I think I gained around 20 iq points almost overnight!

Not sure why your t3 is so high compared to your t4; on ndt my t3 is high in range and my T4 below range.

I would suggest you take result to docs with the scientific and the scientific paper (on thyroid UK site) to docs and ask for T3 supplements with it. Assuming you're going NHS it's unlikely you will get ndt. Again it's unlikely that doc will prescribe t3 and you will probably have to see an NHS endo.

I had completely lost faith in the NHS when I got to this point and went to see a private endo and got a private prescription for ndt.

Good luck

[Hidden in reply to TupennyRush]

Hi Tuppeny Rush, i'm reading this post with great interest and I'm currently searching for a private endo and prepared to travel now to see someone who would listen. My GP has finally agreed after about a year of asking every GP in the practice to refer me to an Endo, but warned me that appointment would be at least 3 months away and sternly warned me that Endo would most probably say the same as the GPs 'you're results are normal' etc etc So I said I would rather pay to get a quicker appointment and now have an appt 6th Sept but can't find out that much about the Endo. Wondered if you would mind sending me a PM with the Endo you saw? Many thanks

[TupennyRush in reply to Hidden]

Hi have pm'd contact details for private endo. I think he's great but let me know if u do see him and how u get on as i like to know that my recommendation of him is ok for others

Good luck (altho if you see the Prof suspect he will help a lot!)

[Cassiedog3 in reply to TupennyRush]

Any chance you could PM me too with details of endo

Many thanks x