Hashimotos - further tests

[humanbean11]

Hi, my daughter had total thyroidectomy in March due to large cysts encroaching on windpipe causing difficulty breathing and eating. She's on levo. Started to feel better after op but gone downhill again. Have posted various results here before and had good advice. Anyway, got to see new endo who did further tests and we've had a letter saying she's referred to rheumatology as she has probable Sjögren's syndrome, I've never heard of it! Results from letter as follows but ranges not stated:

TSH: 5.62

FT4: 13.9

FT3: 3.3

TPO antibody: 303.2

2.30pm cortisol: 178

Coeliac: negative

Antinuclear antibody: positive

(Ro and La positive) consistent with Sjögren's syndrome

Vit D normal

Help! Thanks

[humanbean11]

Hi... Her endo was happy that her thyroid was well medicated but we thought she needed more as her FT3 is closer to the bottom of the normal range and for hashi people tend to feel better when it's in the upper 25%

Anyway, she still feels really tired and has aches and pains, struggles to sleep well etc and he asked about other autoimmune diseases and looked more into family history. We have a family history of thyroid problems. My daughter and my granddad both have vitiligo which led him to do these extra tests. She is seeing a rheumatologist in October so we will have to see what they say.

What's your experience of this? We have never heard of it and don't know a great deal so any comments will help, thanks

[Clutter]

HB,

Your daughter needs a dose increase to bring raise FT4 and FT3 and bring TSH down to 1.0 or lower. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] next week if you would like a copy of the Pulse article which your daughter can show her GP. Lower TSH will help reduce Hashimoto's antibodies too.

If your daughter doesn't feel improvement when TSH is <1.0 with higher FT4 and FT3 she should consider adding T3 to Levothyroxine. Loss of thyroidal conversion means thyroidectomised patients don't always do well on Levothyroxine only.

I assume your daughter is gluten-free?

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Sjogren's is another autoimmune disease google.co.uk/search?q=Sj%C3... There is a HU Sjogren's forum.

[humanbean11]

Will do, thanks again for the advice Clutter

Let's see what October brings x

[Itsjakefromstatefarm]

Hi I don't know if this will help...but I was told by another person that had a TT that it wasn't enough that the antibodies didn't get better until RAI that even the smallest amount left after TT can stimulate antibodies...I has T T but I has Hashimotos in the 300s too.. but then I also has cancer. Good luck to you

[humanbean11 in reply to Itsjakefromstatefarm]

Sorry to hear that, I hope you're on the mend. They did full pathology on thyroid after removal and there was no sign of cancer. That makes sense that your body would still make antibodies if there's a tiny amount left, there probably is as they left the parathyroid in place... I hope the rheumatologist gets to the bottom of this round of problems. Thanks for your message, best of luck! D