Positive antibody results, please help

[karlek]

Hello all. I am new to this community, I have posted on Thyroid UK and have had lots of helpful advice.

I saw my GP in December with some issues which I thought might be thyroid related - it turns out I was briefly hyper-thyroid.

Some auto immune tests were ordered (unintentionally I think) with other bloods and some of these came back positive.

Smooth muscle - positive *80

M2 - initially borderline, re-tested and then positive

Anti smooth muscle antibodies - titre to follow (never did).

High cholesterol (7.3)

FT4 / Thyroxine T4 - 11 (8-21 range)

RBC - 5.20 (3.8-4.8)

Ferritin - hovers around 30 (23-300) despite being post menopausal

Liver funtion tests seem ok.

I have been feeling a bit ropey the past few weeks with a funny metallic taste in my mouth.

Should I go back to my GP and ask for further tests? I am due for a check on my thyroid levels.

When the first results were released my GP refused to discuss the liver results with me saying there was no need to worry.

Is she right?

Please advise as I really don't know what's going on.

[ninjagirlwebb]

If I were you I would insist on following up on any abnormal results as a precaution for peace of mind. Also you should have doctor investigate the metallic taste in your mouth.

Recently I was concerned about measles as it is becoming rampant again. I understand that sometimes the immunity can wane even if you got the vaccines. So I went ahead & asked my doctor to run the titers to make sure I am still immune & don’t need a booster shot. I can sleep better when I know I am immune.

Same goes for any doubts you have because I wouldn’t want to wonder.

Good Luck,

Haley

[butterflyEi]

If your GP is unsympathetic and you have a surgery of different doctors it may be an advantage to see a different one. Whichever it is helpful to have your concerns addressed. Many of us report that either PBC was picked up by accident or have waited up to 10 years to find a diagnosis. Keep at them.

best wishes

[GrittyReads]

Hi Karlak,

Please do, try not to worry, as that is worse for any condition, especially autoimmune ones.

Nevertheless, the replies you have from ninjagirl and butterfly are 'spot on', as you do you need to make sure that your GPs are following this up, properly, just in case it is PBC, or another autoimmune condition.

However ... do take heart from the fact that lots of people can have autoimmune antibodies (particularly AMA-M2) and yet have nothing wrong with them. [NB - About 8% of blood donors have AMAs, yet they are found not to have PBC - or anything else - and hardly any of them go on to develop PBC). EG: It's been known that I have AMAs-M2 since 1994, and I still don't have PBC.

BUT … what your GP should have told you is that they will carry on monitoring you, until they are sure what is going on. People (like me) who just have AMAs, have to have a blood test every year, just to make sure that nothing has developed - and your GP should have told you this. Also: it is accepted procedure for them to check every few months when such things have only just been noticed … and to check carefully for all other possible autoimmune conditions ... just so that everything can be ruled out, and they are sure nothing is developing.

I think Butterfly is right to suggest that you try other GPs in the Drs' Practice, just in case one has more experience of autoimmune conditions. One of my GPs told me that I did have PBC, just based on the AMAs … !!! But when I talked to the trained advisors at the (wonderful) 'PBC Foundation' [see link above, right] they told me that this was not the case. So I went to different GPs in the practice and my current one was the only one out of 4 who had ever had PBC patients, and she retested and said I didn't have it, but that she would monitor me.

So, do try not to worry, but try other GPs and make sure they are following it all up, properly. Talking to the 'PBC Foundation' people might also help, as well as reading all the info on their wonderful website.

Take care,

Gritty

[karlek]

Thanks all for the super supportive comments.

I do worry about my health, I have been quite below par for a while and struggle with my mental health so I find it hard to switch off.

I have booked in to see a different GP, I was told she is sympathetic and 'gets it' so am hoping she will be more helpful.

i need to see a GP anyway as my thyroid has been playing up so I need further tests.

Should I ask for further antibodies test to clarify the results (they had varied a bit the past two times there were checked).

My thryoid issues point to Hashis but I had no raised antibodies when tested.

Thanks again