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#480543 11/29/12 07:06 AM
Joined: May 2008
Posts: 285
jessxo Offline OP
OP Offline
Joined: May 2008
Posts: 285
Hello friendly neighborhood AS kickers --

It's been a while, but wanted to share and also get some input... Saw my Rheum a couple weeks ago and she did normal blood tests, but this time I asked her to also please check my thyroid with the more sensitive blood test (I had heard about it on the news at some point). Well, guess whose thyroid test came back low? I must repeat the test in 3 weeks and then she will prescribe meds if needed.

While I'm super pleased with the prospect of effective treatment for possibly seeing improvement with some of these symptoms (fatigue, sluggishment) and excess (unexplained) weight, I am also finding it difficult not to feel betrayed once again... Why did I have to ask for this test? Why, when I have every single symptom of this condition, and when it is downright common in those of use with autoimmune conditions (and my Mom has it and I know I've mentioned that!), did it take me to ask for this?? I've just been burned so many times with docs not being on top of things - I could go on and on. More than anything it's disappointing to think it maybe it was never secondary fibromyalgia, and it didn't have to be this way for me these past few years... But, that said, I am still grateful that this could be something to actually be treated and improved! Oh, and my sed rate was 60 - I think that's pretty high.

All in all, maybe this can be a useful cautionary tale for others at risk also, please ask for the more sensitive thyroid test!!

OK ASers, let me have it straight - what do you think?


Dx'd AS (seronegative spondylarthopathy), Fibromyalgia 8/2007
Be happy for this moment... This moment is your life.

jessxo #480546 11/29/12 07:48 AM
Joined: Jul 2010
Posts: 1,190
Joined: Jul 2010
Posts: 1,190
Sed rate 60, OUCH! When mine is that high I feel awful. Hope you feel better soon. I think our doctors have so many patients it is hard for them to keep up with it all. Hope everything works out well for you.

Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
jessxo #480550 11/29/12 01:09 PM
Joined: Jan 2008
Posts: 21,346
Likes: 1
Joined: Jan 2008
Posts: 21,346
Likes: 1
Hope that does help you. smile

can i ask what test you got (instead of what other test, for your thyroid?

i've been on synthroid for years now. my TSH kept rising. but interestingly, the first endocrinologist didn't want to treat it because "if its treated, it will have to be treated for the rest of your life." long story short, i went to a thyroid specialist in town, he was irritated with that other doctor's response, and put me on the synthroid. I was hoping that would help me with symptoms, and maybe it is in the background, but really, i haven't noticed much either way. I hope you do.

but that endocrinologist did tell me that endocrine problems don't cause the kinds of problems i have (rheumatological) but what endocrine problems tend to do is to make whatever you have worse (kinda like finding the proverbial achilles heel).

i do feel better now between flares, and maybe the synthroid plays some small part, along with the supplements, LDN, and pred for flares that the rheumy is doing, along with my diet and exercise and chiro that i'm doing.

as for how you feel. even when i finally got dx'ed with the undiff spondy, those feelings that you describe hung on for awhile. I started having problems in 1998 and wasn't dx'ed or treated until 2010. I was furious by then for being dismissed over and over again by 4 different rheumatologists over the years, especially the last 3 over a 3-4 year period of time. And not only was I dismissed, but often was treated as a malingerer (or some kind of criminal).

BUT, I knew for my own health, I had to find a way to get past it and give it up. Being angry was only hurting myself, no one else. I had to let the anger go. When I think about it, I still get a bit angry, but then I just try to focus on the good doctors I have now, and how well they take care of me, and how much they seem to have my best interests at heart. It was a long journey, but I finally arrived at this point.

I guess what I'm saying is that when we are bounced around for so long, for whatever reason, even if we can believe its really nobody's fault, we still get angry, and I think that's normal. But we need to find a way to get over it, because it helps no one, and it especially hurts us.

In all fairness, I don't think any of it is malicious or on purpose. I do think that most doctors are far too busy and while "smart enough", few are brilliant. And spondy (and other hard to dx things) need not just people that are smart enough, but the best of the best.

So, what can we do? exactly what you are doing. read, be our own advocates, and find doctors that can help us.

just my two cents.


Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
jessxo #480563 11/29/12 05:51 PM
Joined: Jan 2010
Posts: 2,105
Joined: Jan 2010
Posts: 2,105
I think there is a lot of bad treatment about with thyroid - both on folk getting too easily "diagnosed" by GPs and put on treatment without really in depth investigation of whats going on, and by folk not being diagnosed when they should be. Also that standard synthetic thyroid treatments don't always work particularly well, and folk don't get properly monitored or given other options, so are ending up with sub-optimal treatment.

To my mind, anyone with any signs of thyroid dysfunction needs to be properly assessed, treated and monitored by a fully qualified endocrinologist, and that should include looking at a variety of different and more sensitive testing to really make sure that the treatment plan is addressing the issue properly.

Glad you finally got to the bottom of it though.

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