fluctuating elevated anti TPO antibodies

[dnafix]

Hi!

I was wondering if someone could provide me with some info. In June this year I tested positive for anti-TPO antibodies (375) and was told to see an endocrinologist. Due to an upcoming move halfway across the country I could not get an appointment soon enough and was told to find and endocrin. at my new place of residence. I am in Canada and due to the two endocr. around here being overrun I could not get an appointment. In November my GP re-stested me on my request to monitor whatever is going on and the level had gone down to 115 and upon consultation with my previous endo in my prior place of residence we decided to watch an wait for now, since I would have to fly half-way across the country for a consult. I left it at that, feeling that if I have Hashimoto's it's aggravated by stress. My TSH has always been normal.
I also have FM since 1992, but am extremely high functioning. However, at the beginning of my illness I had some funky auto-immune issues that nobody could make sense of, so they labelled me with FM. I have never been happy with this diagnosis, because there are other things that don't jibe well with it. For one thing, I responded really well to NSAIDS and my pain disappeared, until I became allergic and had to stop taking them. Voila, pain back. I also have severe allergies and environmental sensitivities and cannot take meds very well anymore. I always suspected an underlying auto-immune disorder, which has not been properly diagnosed. I had tests done for Sjogrens and am clear of that, but I am suspecting lupus. I read also online that elevated anti-TPO antibodies can occur in Lupus or any other related RA disorder. Is that correct? My sister has juvenile AR, which is better now that she is grown up, but she nearly lost vision in one eye. In addition I have elevated anti-smooth muscle antibodies. I am in severe pain all the time, but have learned to live with it. Recently I have developed photosensitivity, where the sun on my face is really burning me (in the winter) and an increase in joint pain, especially my hips. I wonder if that could be a flare and if I should pursue this further with my GP. Before, my ESR has always been normal. CPK as well. But I always have this severe burning abdominal pain and the last couple of days I developed palpitations. Peri-menopause or a severe flare? I can live with a flare, but if there is something out of the ordinary I should follow up on it would be great to know. The palps came on right after my period.
I'd appreciate it someone could help me make some sense of these tests. I have the results of all my tests, so we could weed through it. Thanks a bunch in advance!

[Dnmh]

The long and winding road to a diagnosis! I've been on mine for over 4 years and still treveling!
Eleveated TPO antibodies could very well be Hashimoto's or Grave's, and yes, they do fluctuate! Do you have a copy of the actual lab report with reference values?
An improperly working thyroid can cause the problems you are having - including the sensitivity to medications and sunlight. Your GP can get a clue into how your's is functioning through simple blood tests. Most doc rely only on TSH levels, but with autoimmune thyroid problems, the TSH can be "normal" and you will still have symptoms. I would suggest asking for Free T3 and Free T4 along with TSH and possibly a repeat TPO. If either T3 or T4 are elevated, that may suggest starting treatment with thyroid meds. Again, that is something a GP should be able to take care of.

Unfortunately, once you have an autoimmune disorder, you are more prone to developing others. A good friend once described it as your main autoimmune is like the head of the household, and once he's established himself, he can and usually does, invite most of his relatives to take up residence, with him being the main one in control! That is what causes such a delay in getting to the bottom of it all.

What part of Canada are you in? I have some friends (one with Hashimoto's) up there that may be able to give me some insight into getting in to different docs?

It is a long road to diagnosis, but you have found a group of people who have been there, some still going. We will do whatever we can to help you on this journey! Please keep us informed.
D.

[txsilver]

I can relate to your frustration.  It took me two years to get a diagnosis.  I think some of us develop pain and suffer long before any tangible evidence shows up in our test results.  Do not give up.  I believe that if you think there is more at work then there probably is.  There are members in this community that have worked for a decade or longer in an effort to get a diagnosis.  I pray that will not be the case for you but hope you will be that tenacious!  Collect your test results, ask for copies, and as symptoms appear or change, document them.  Maintaining your own records can provide insight down the road.  We will do all we can to be here for you and help you in your efforts to get a dx, we will cheer you when you need a lift and we will share with you how we cope with the pain and work around the limitations these conditions present.  You are among friends here who understand.

[dnafix]

I had seen 2 rheumatologists and one actually said he calls FM the Fword and according to him it does not exist, however, he did not provide an alternative dx, other than saying that in some people the antibody levels are elevated. Seems OK, but usually you don't have such pain. I had an MRI of the brain and all my X-rays came back normal. I should be happy that they can't find anything conclusive but I can't help but think they are missing something.
Since I moved though I will try and get to see a rheumatologist here. They often don't want to see patients with an FM dx, because there is nothing they can do. I'll just keep on trying and still hoping for some answers on this forum. Thanks, though txsilver.

[txsilver]

I started with a diagnosis of FM and know what you mean about being dissatisfied with that dx.  I ended up with a list as long as my arm of dx, none of which was FM.  I think you are on the right track to keep pursuing it.  Can you get to a rheumatologist?  With a dx of FM and your thyroid test results, your family history and your other symptoms, I would recommend you see one.  An important thing to note, blood tests do not provide diagnosis.  They provide insight and indicators to the doctor that can be used to help point in the correct direction.  The combination of blood work, symptoms and physical evidence from an examination, MRIs and x-rays are used to diagnose a condition.  Please keep us posted on how you are doing and what happens next.  Good luck!