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- Tue Aug 26, 2008 12:00 am
I am a 37 year old female, and I have had joint pain and stiffness in my wrists, fingers, ankles, toes and knees for just over a year. It is symetrical, but where the pain is worst varies from day to day.
I have seen a rheumatologist and have had every test under the sun, and still don't have a diagnosis. I had a bone scan that showed very mild synovitis in my hands. My feet were 'indistinct' and there were no abnormalities in the rest of my body.
The blood tests I've had have all been negative/normal - RF, CRP, ANA, ESR, HLA B27, CCP... Liver function and kidney function tests are normal, and all the other general tests are normal, with the exception of slightly elevated cholesterol and mild eosinophilia.
I tried several anti inflamatory drugs, but none had any effect. Then my rheumatologist put me on 25mg prednisolone, which I was gradually tapered off, and then started sulfasalizine and Hydroxychloroquine. I thought maybe the prednisolone was helping, but in hindsight I don't think it helped at all, because the severity of the pain just varies from day to day or week to week. And having talked to others about prednisolone, they tell me it should have had a 'magic' effect i.e. if it was going to work, it would work brilliantly. I still had some pretty terrible days on the prednisolone. Same with the sulfa and hydroxychloroquine. I took these for almost four months with not even a little improvement, then stopped. I stopped because I was having eye problems, and becoming very depressed. Since stopping those meds my eyes are back to normal, and I'm not depressed anymore.
At the moment I am not taking any medications at all. And when I look back over the last year, nothing has changed at all in that time. The pattern tends to be about one week in four i am completely debilitated by pain and fatigue. For about two weeks I can function well enough to take my kids to and from school, and do a little light housework, but not much else. By 5 or 6pm the pain is bad, and I need to just rest on the couch for the rest of the evening (and go to bed early). And then I have about a week where I'm pretty ok - the pain is mild during the day, and it gets worse in the evenings, but only moderate.
So basically nothing has helped at all, and things are getting gradually worse, if anything. Every morning I have stiffness and some degree of pain. During the day is mostly better, but by afternoon I get very fatigued and the pain returns. I no longer work, and most of the time can't even manage gentle walking. The pain in my feet, especially towards the end of the day makes it too painful, along with the fatigue. Prior to the onset of whatever this is, i was very fit and active. I used to run 5km every other day and get out a lot. Now I just tend to stay at home.
My rheumatologist is at a loss. He doesn't think it's RA or lupus, infact he no longer thinks its an auto immune disease. He refered me to an endocrinologist as he suspected it could be a thyroid issue as i already have Hashimotos, but the endocrinologist said all my blood work was fine (TSH and T4) and basically told me to go away, not his problem. I also have Raynauds and am anemic, feel the cold terribly and struggle to lose weight, so i thought the undertreated thyroid theory was plausible, but the labs say no. (Even when I was running 25km per week I was still about 20kg overweight). I eat a healthy low fat, low carb, no processed food diet.
Anyway, now after having done much reading and research the only other possibility seems to be an occult tumour. My doctor said she would expect I would be losing weight if there was a cancer process going on, and I would be sicker. My rheumatlogist said the bone scan would have shown any metastases to the bone, but I'm worried there's a tumour somewhere else causing these symptoms, and by the time they find it, it'll be too late. So after this long winded (sorry) post, what are the chances? I'm only 37, and I don't know (and can't find out) my extended family's medical history. I'm terrified I'm not going to be around to see my kids grow up, and I feel like all the doctors I've seen are at a loss, and would be happier if I'd just stop bothering them. All they have to offer me now are anti depressants, which don't take away the pain and disability, therefore don't have much hope of taking away my occasional low moods and fears.
So, are there any further tests i should be asking for? Are there any blood tests that could be helpful? Can I be sent off for a full body scan to look for a tumour, like they do on House :). If anyone has any ideas or suggestions, I would be very grateful for the help. I know I should probably just 'sit back and wait and see what presents itself' as my rheumatologist suggests, but as I am so physically limited in what I can do, i have lots of time to sit around worrying :). And all my research seems to come back to the cancer theory...
Thanks for reading through all this stuff.
| Dr. Safaa Mahmoud
- Thu Oct 23, 2008 7:17 pm
Your symptoms are more likely to be due to polyarthritis and indirectly related to your thyroid problem.
Hashimoto's thyroiditis is an autoimmune disease characterized by the presence of antimicrosomal antibodies against thyroid cells. Its association with polyarthritis and rheumatic diseases is reported in different studies.
Hashimoto's thyroiditis results in hypothyroidism and has been associated with rheumatic syndromes that include fibrositis, myositis, myalgias, carpal tunnel syndrome, Sjogren's syndrome, joint stiffness, joint effusion and an arthropathy resembling RA in which involved joints were lacking most of signs of inflammation. Most of these conditions are expected to resolve with adequate thyroid replacement therapy.
Minority of patients with Hashimoto's thyroiditis present with inflammatory polyarthritis (IP) like RA and SLE. However, these patients are usually seronegative (no antibodies detected in their bloods, and are normothyroid (subsequently may become hypothyroid).
The condition seems to be related to the antithyroid autoantibodies that are thought to attack the synovial tissue. Most of these patients are HLA-DR2 positive. Unfortunately, these patients do not commonly improve with normalization of the thyroid function. However, different lines of therpaies are available.
Cancer is not likely to be the cause of your symptoms and unfortunately there is no such test that can be done blindly to look for a malignancy any where in your body. Unless a site (organ) specific cancer is suspected based on risks, symptoms or signs and is looked for, cancer is not diagnosed (which is not the case).
I advise you to follow up with your doctor and to recheck your thyroid function tests.
Please keep us updated.
- Mon Nov 03, 2008 6:21 pm
Thankyou so much for your reply. I am feeling much calmer these days. I've also gotten a marked improvement on my symptoms by following a vegan, gluten free diet. It's very restrictive, but I've had so much pain relief from eating this way that it's worth it. I now have about two bad days a week, and 3 or 4 bad nights. Still got a long way to go, but it's better.
I've been talking to my doctors about the Hashimotos, but still my thyroid tests come back normal. I feel better when my thyroid tests read a little bit over normal, and its a constant battle to get my doctor to agree to keep me on this dose. I do believe now that I'm one of those minority Hashimotos patients, and my rheumatologist is now saying the diagnosis 'seronegative RA' . It feels better to have a diagnosis, but i've heard that T3 therapy can help in some cases. My doctor won't agree to this, however. My rheumy wants to try me on methotrexate. Would this be one of the possible therapies that you refer to? I'm a bit unsure of methotrexate...it sounds a bit scarey.
On the whole though, I'm in a much better place. I believe hashimotos is the cause, and I'm trying to accept that there might not be a solution, and just make the best of things. Thankyou again for your reply, much apreciated. If you have any advice regarding possible treatments, I will be most grateful.