will a rheumatologist find out what is wrong?

I have a list of symptoms including joint pain, painful periods, exhaustion, shortness of breath, frequent waking during the oh so long night, sleep apnea, hair loss, feeling really ill, my previously strong nails splitting down the nail, recurring bouts of thrush and I'm frozen (my feet are blue most of the time). My blood tests all come back as normal except my esr which is 85

I have been through various diagnosis including depression, hypothyroidism, fibromyalgia, arthritis to just being plain lazy. It seems that doctors jump to conclusions before I have finished telling them my symptoms and then ignore any that dont fit in with their diagnosis. This has resulted in them throughing more different tablets at me.

All through this I have continued to feel ill and am in fact getting worse by the day.

After getting so bad that I ended up in casualty I was given more blood tests and told I had an unspecified auto-immune disease and have now been referred to a rheumatologist. Will they be able to find out what is wrong?

6 Replies

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  • The referral to rheumatologist may well be a good thing, as he/she will be able to look at things from their perspective. Sometimes getting a diagnosis is a very long process, mostly consisting of 'ruling out' other things that might fit your symptoms.

    On the face of it though, the list of horrible symptoms you describe do sound very much as though they could be thyroid related. And you say you've been diagnosed with hypothyroidism. So it makes sense to look at that aspect first.

    Are you on any thyroid medication? If so, what medication and what dose? What were the results of your last thyroid test? And have you ever been referred to an endocrinologist?

  • i was put on 100 of eltroxin for 2 weeks and then taken of it. My gp wouldn't tell me the actual results of the thyroid test but kept telling me they were normal. I asked to be referred to an endocrinologist and he told me to pull myself together and get out walking. It seems from reading peoples comments on here that finding a good gp seems to be the biggest battle.

  • This is an unusual course of events - something isn't making sense here. 100 mcg is an unusually high starting dose. And to be taken off altogether after only two weeks seems very strange indeed. Did you have a very bad reaction to the medication that then led to our being taken off it?

    You are correct - a GP who's willing to listen and do whatever it takes to get you well is what you need. But you also can take some control of the situation yourself.

    You have a legal right to know your actual test results. Contact your surgery and ask for them, and don't be fobbed off with 'normal'. Ask for printouts of all your test results, including the ones before you were put on thyroid medication.

    <b>Updated on Nov 3 2010 9:08AM:</b> I know how much damage long term illness can do to your self esteem. If you don't feel able or confident enough to stand up for yourself with asking for the test results, then maybe you could enlist the help of a family member / friend / partner. Often it helps to have someone else with you when you go to appointments too.

  • thanks redapple and vikkihope. I was beginning to think I would never feel well. I am taking a friend with me to see the rheumatologist which I'm now much more positive about. thanks again

  • That's good to hear. I do hope all goes well for you. Please come back and let us know how you got on.

  • Yes they should be able to help, they helped me they were the ones that diagnosed me and so far been the most helpful good luck x

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