Autoimmune diagnosis

[Suzy61Taylor]

Good evening everyone.

My GP diagnosed me with Primary Hypothyroidism in December 2013. I still have a relatively high TSH despite medication consisting of T3 and T4, which she now wants to raise.

One of my blood tests confirmed I have an autoimmune result which my GP says are anti-bodies attacking my thyroid, but its not Hashimotos because I'm hypothyroid not hyperthyroid. She also says that the lab declined to test for anti TPO or TgAb as these would undoubtedly be raised. When I asked her the question, will these anti-bodies continue to attack my thyroid to destruction she said no and I was not to worry unnecessarily. Should I be worried and how do I know if these anti-bodies are anti-thyroid and not some other anti-body unrelated to my thyroid, such as RA, Lupus or Celiac. Any information would be great!

[Clutter]

Hashimoto's causes hypothyroidism, not hyperthyroidism. Thyroid Peroxidase antibody (TPoAb) is the usual test for autoimmune thyroid disease (Hashimoto's) and less commonly Thyroglobulin antibody (TgAb). Thyroid Receptor antibody (TRab) tests for Graves, also an autoimmune thyroid disease which causes hyperthyroidism.

The only way to determine autoimmune thyroid disease is to have the tests above. If you have Hashmoto's it will likely eventually destroy your thyroid although Levothyroxine can delay it.

Although treatment for Hashi is the same as for primary hypothyroidism it is useful to know whether you have autoimmune thyroiditis as ownership of one autoimmune disease can predispose you to others and making lifestyle and dietary changes may delay or prevent the onset of others.

Gluten-free and Paleo diet are often recommended for Hashi sufferers as most autoimmune disease is thought to originate in the gut.

[Suzy61Taylor]

Gluten free now since December. I'll just keep plugging away and live in hope of educating my GP!

Thanks Clutter

[crimple]

When I had high TPO antibodies I was told there was no need to do anything, they just increased my levo very slightly. I read about gluten and dairy free diet and after 4 months my TPO levels came right down and I felt a lot better. Most GPs and endos have no idea what to do about Hashi's. It has to be DIY treatment and of course what has diet got to do with anything? Excuse my cynicism! Hope things improve.

[Suzy61Taylor]

Thank you Crimple.

Did you at least get tested for Antibodies? My GP says there is no point as the results will come back as positive because a previous blood result confirmed Autoimmune Disease. Having the information to hand, i.e., readings would at least give me a base line to work from.

I am now gluten free and have been since December, but so far my levels of TSH have gone up and my T4 down. I have been granted (lucky me!) T3 which has improved my symptoms but the GP insists that I need Levo to get my TSH levels down. Obviously my reasoning that I felt dreadful after 5 months on Levo alone was not in her opinion a good enough reason to come off T4. I'm now waiting for my NDT to come which I've ordered from the US. My GP does not know of my intentions.

It's hard keeping everything in perspective but most people on this site know and empathise with the debilitating symptoms of Hypothyroidism. I cannot predict how I will feel from early morning to lunchtime and then from mid afternoon to the evening. But now I keep a detailed diary and can see a familiar pattern. Once again Crimple thank you for taking the time to reply.

[mistydog]

Have you had your B12, Vit D, folate and ferritin checked?

[Suzy61Taylor]

Hello Mistydog. Yes, all the above levels are good. I'm always vigilant with Vit D in particular as I have osteoporosis. I did read that osteoporosis is another autoimmune disfunction, so hopefully I won't go on to develop anything else. I've just had confirmation of my NDT order, and it's waiting collection from the PO.

Its going to be an expensive monthly outlay if I can't find a GP to prescribed for me on a named patient basis. My Endo thinks its rubbish, so I won't get any help there. In my experience, once an Endo is on board with 'looking' after you then your own GP won't take any responsibility and certainly wouldn't fly in the face of the 'expert'

D.I.Y is the way ahead it seems. Bit scary, and when my Levo is at it's highest dose I feel lousy but my TSH is down and conversely, when my TSH is high (as it is now) and I'm on T3 only I feel at my best. So, NDT it is! Thank you for replying to my question. x

[Hidden in reply to Suzy61Taylor]

Has NDT helped?

sorry Suzy - I'm just naturally curious

[Suzy61Taylor]

So much better on NDT. I have just received my latest blood results and I am almost in the normal range for TSH and FT3. I now have very few symptoms. I still get tired and breathless but most of that is down to my cardiac issue. With any luck when I have my Aortic valve replaced I will feel back to normal! As yet I have not told my GP. about going it alone. She still thinks I'm taking Levo with T3. I know she won't support me with NDT so in August I'm going to see a private Dr with a view for a private prescription. Thanks for asking x

[Suzy61Taylor]

Sorry, should also have mentioned that I have been GF for 6 months as I appear to have an autoimmune problem. (strongly runs in the family), so maybe my dietary lifestyle change is helping. I still have dairy products and I have almost eliminated sugar. Honey is my occasional treat!