I am going to see my regular internist next week. Some of you may remember I recently went to the U of M and they told me I am healthy, just fat, to stop the steroids and humira and stop complaining!
Hey Michele....have no info for you, your zero just looked a little lonely.
It looks painful, whatever it is. Hope you get some relief. And a doc that can find what's going on.
micelb, sorry for all you are going thru. With the minimal joint erosions it probably is ra. Sounds like you have a host of symptoms. Some ppl with 1 auto-immune disease go on to progress several others. Stay deligent and be good to yourself, physically and mentally. HUGS!Thyroid - have you been to an endocrine? Check ratios.
H. Pylori
Lymes - get the Igenex test
Hugs,
Pip
Pip.....thyroid can make your joints swell the way RA does? I didn't know that.Michele, you stated that you have high BP. Are you being treated for that? Also, have you had a cardiac workup? If your heart is not working efficiently, it can cause swelling, fatigue, heart beat irregularities, etc. A treatment for hypertension which includes a dieuretic might be helpful, but I do think you should at least get everything checked out.
Do you know if your Vitamin D level has been checked. That was a huge part of my pain and swelling - a deficiency had led to osteomalacia. Just something else to ask about.
You definitely have a lot of things going on, and it seems to have the doctors stumped. I really feel for you and understand your frustration.
Is there anything you can consider environmentally that might be contributing to some of this? Can you pinpoint any changes in where you live, or work that coincide with the start of your problems? Or lifestyle changes that might be a factor? I mean you do hear stories of people who develop problems because they are living near a toxic site, or are working in an environment that makes them sick.
I hope you can find some help soon. Good luck to you.
http://thyroid.about.com/cs/hypothyroidism/a/checklist.htm
There are plenty of instances where results are in "normal" range but they aren't optimum
The thyroid.about.com forum has a whole bunch of really knowlegable people..they are very good at interperting lab work. Go over there and post your story, with the lab resultsif you have them...see what they have to say. Your story is very similar to several people over there
Oh sweetie, you are most definitely swollen! I agree with the others, keep demanding more tests because there has to be a reason you are swelling. It is not just fat! It just frys my butt when I hear that. I had a young dr tell me that one time and i was only 145lbs - overweight, but not enough to explain my symptoms. Keep going to new doctors if you have to. Hang in there...Linncn -
When I first got ill that was the first thing they did to try ruling things out. When the tests came back normal they said, "nope, the thyroid isn't causing this." Big problems trying to get a referral to an endocrine (PCP refused and said only one thyroid test was necessary and fought me on the other 3). I'd always assumed that because I was in the range I was OK there so was suitably amazed when the nutritionist said 'whoa, look at this." More research, I guess.
As somebody who thought they didn't have thyroid problems I've kind of kept an eye on the posts about it because it seemed like so many of you did. Now I'm possibly in that group too! LOL Anyway, my 'impression' has always been the thyroid is the 'first to go' in these diseases. Guess that doesn't help much.
Michelle -
You know you have lead paint, right? Under all the new paint? Did they use a 'gun' to tell you how deep it was? Did they check the window sills and blinds? For the most part, LBP is not toxic - even if ingested in 'chips'. DO NOT TRY THIS AT HOME. (It's more complicated than this but...). It's the dust that is toxic and why kids end up mentally retarded; they get the dust on thier hands and then put their hands in their mouth. Adults do not have the same problems with LBP that children to because of thier neuro-musclular development.
Yes, there is a test for molds. Look in the yellow pages for a 'environmental' tester. I used a company out of Livingston because they just did the testing - they didn't remediate. But here's a scenario. There are 200 varieties of penicillum (the bad stuff) but only 2 that are toxic. The mold remediation guys come in full Haz Mat suits and scare people to death. The environmental people come in real street clothes with a few Q-tips and a baggie and ship it off to the lab. Then they say...yep, you have pennicillum. So, you ask,"is it the bad stuff?" and they say, "oh, didn't test for that. That will cost 0 more". So, MHO, you have a choice - being scared into paying an arm and a leg for remediation you may not need - or being nickle and dimed to death.
Hugs,
Pip
I did have a cardio work up a few years ago. I have been t the er a couple of times and they always say the ekg and such are fine. My bp is high, I am on catapress patches for that but when the pain is bad or I am stressed, it still gets pretty high. Last week it was 180 over 110. Monday it was 140 over 90. I have read about a syndrome called POTS that can make your heart rate and bp increase for no real reason. Printed out a sheet about it and have it in the pile to take to the internist! Pip, I know a lot of women with thyroid problems, but the big thing for them is always uncontrollable weight gain an low energy. I haven't heard a joint connection before. Thanks for the info.I have been on high doses of pred, as high as 60mg for weeks and the swelling never goes down. Even had many shots in the butt and it doesn't help!Oddly, I did have a LOT of weight gain and low energy. Guess I need to go to Buckeyes web site. I just thought it was the baby.
Michelle -
Let me look around and see what I can come up with. Wait, you're on nystatin, right? Wouldn't that accomplish the same thing? I do know I saw posts on the RB about mold in the body and how hard it is to kill it off. So there has to be tests, I'm guessing, because a doc figured it out somehow.
Pip
I have a really bad mold problem in the house that we live in. that is part of the reason we are moving. I can't say for sure if it is the cause of my entire family being so ill all the time, but I would be willing to bet that it has something to do with it.
I am going to ask for the thyroid tests next time I am in at my PCP's office. Thanks for all the info on the thyroid stuff everyone.
Hmm, Pip, not sure if nystatin would kill mold if it was in our body? There has to be something hey can test in our bodies to see if we have been infected with it somehow??Michelle,
I don't have any new thoughts on what could be the trouble. Your symptoms are serious, don't be satisfied until you find something that works, whether you get a dx or not. I know what you are going through with the dx part. I am undiagnosed again after going to see a specialist and they want to take me off my meds (which are finally working!) because there is no firm dx. That dr at U of M should not be practicing-is he blind?
Laker
Hey, just thought I would add my 2 cents worth to the discussion. Have you ever considered being retested for Lymes disease? Sometimes when it is in it's early stages it will not show up in blood work. I have a friend who suffered with undiagnosed symptoms for several months and finally one of the many dr's she saw retested her for Lymes disease and it came back positive this time. They started treatment and she began to improve, slowly at first but then better later on. Just a thoughtMichele, is anyone else in your workplace ill? (I'm sorry, I just skimmed the responses, but I don't think that's been asked yet other than the mold issue).
My mom retired two weeks ago and has felt so much better since she's been out of her office. We're convinced that her office was a "sick" building, as she'd have lots of swelling and other symptoms that were completely unexplained (she does not have RA).
No matter what, I commend you for doing so much research, and I certainly hope you get to the bottom of things and feel better soon!
Thanks everyone, I have been busy at work but brought my folder of blood tests in today and I am going to look up what thyroid testing I have had.IgeneX is 5, I think, through my MD. I think it's less on their website.
Pip
I will check the web site! I had the secretary of the infectious disease doc I saw in this morning with her kid for glasses and I asked her about it. She said the pee igenex test they send in was 0!! Wonder if they are just making a huge profit on the testing??Hi micheleb,
I am so sorry you're not feeling well. I have had thyroid problems for years. I was 27 when I was diagnosed, I'm 50 now. I was diagnosed with Graves. And quickly found out that I was going to have to do alot of reading, studing and pushing the Drs for results at times. I have quite a few family members who now have some form of thyroid problems..... I've sent you the email address for the AACE. I hope that it will help you... I know that some Drs are going by the old blood test numbers. I sent you the paragraph to the new blood test numbers.
"Until November 2002, doctors had relied on a normal TSH level ranging from 0.5 to 5.0 to diagnose and treat patients with a thyroid disorder who tested outside the boundaries of that range5 . Now AACE encourages doctors to consider treatment for patients who test outside the boundaries of a narrower margin based on a target TSH level of 0.3 to 3.04. AACE believes the new range will result in proper diagnosis for millions of Americans who suffer from a mild thyroid disorder, but have gone untreated until now." This is from WWW.aace.com, American Association of Clinical Endocrinologist
Lori
Hey Michele, not to fill your head with too many bad things, but have you ever played around on www.wrongdiagnosis.com? Be careful, you can really get caught up in some of that stuff, but it may give you some hints or ideas as to what else to ask your doc about. The site can be kind of confusing, but it has a lot of information that's not real easy to find.