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Old 02-26-2001, 08:43 AM   #16
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It seems that in light of the fact that the field of endocrinology itself has mostly been up to now using an inaccurate understanding of TSH readings for normal thyroid, that they do not at all know what per cent of FMers are actually hypothyroid, mostly because the FMers usually cannot get past the Rhuematologist or general practitioner!

Remember, the medical profession is not a precise science and makes many mistakes! (Think about Phen-Phen, and others)
I agree with cioc, we must watch out for ourselves.
By the way, I did get the FM diagnosis and was told my thyroid is normal. And I know all kinds of people that are suffering daily and that do not get relief whose doctors told them their thyroid is normal...but they don't know their lab results or believe that a doctor would miss this.
This is tragic!

[This message has been edited by friend (edited 02-26-2001).]

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Old 02-28-2001, 10:03 PM   #17
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Two things here:

"CIOC": Actually looking at the list of top 10 symptoms that you all have posted that you have for FM, they pretty much are the same top ten for thyroid. And I don't remember posting anything that said 90% of FM is thyroid. Did I say that somewhere? I just like to keep the newbees on this board informed that thyroid is a real possibility and there is lots of information on the FM/thyroid link out there now. Believe me, where I come from the Dr.'s are that slow. I had 35 of the 42 thyroid symptoms, 5 people in my family being treated for thyroid, but oh no I didn't have thyroid problems. Course they didn't have a clue what it was. But they are more than willing to prescribe expensive medications to treat all the symptoms one at a time.(pick your top three that bug you and we'll give you drugs for that and see how you do) Funny how the symptoms went away when I got my TSH down a point with the help of a naturopath. She did believe me it was thyroid. (I guess that was more than two things)

FRIEND: There have been a couple of posters who know their TSH and they were both under 2. I figured for sure they would be over 2 anyway. Mine was 3.3 and told "normal" So do you know anything about the TRH test? Would that tell for sure if it was thyroid? And lets just forget about this TSH test.

Old 03-01-2001, 05:04 AM   #18
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I want to thank all of those who don't have FMS for there warnings that we may have Lyme, thyroid, MS, cancer or some other problem. I also, want to thank those who have FMS and something else.

From the readings I've done, most incorrect diagnoises are by doctors that are not specialists in FMS. I am saying not properly trained to do a proper diagnosis. You also can develpop FMS after another disease or other triggering event, have both (FMS and another condition) or left with FMS or CFS or more from what I have read. I like the post Kim posted on Good FMS and CFS site and web med post. I also agree with Kim and all the others who say check it all out. Be sure to get a second opinion and get all the tests done that relate to your symptoms. This has been said on this board since I can remember. The key is to find the right doctor, or doctors, who can make the diagnosis.

This TSH information you have asked for but you have never said what you are doing with it. What are you doing with this information you are gathering? Maybe, if you told people why you need or want their TSH results we would give them. Thank's for the thyroid infomation.

Good luck.


Old 03-01-2001, 07:50 AM   #19
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JB- I just think that you guys come on a little strong. I think that thyroid IS something to look at but there are other tests as well. My TSH was .73 and I do NOT match up with the thyroid symptom list by a mile, I pulled up another site last night to be sure. Some of my symptoms are the same as for thyroid problems but the overall picture points way away from it. I think that's part of why I got a bit irritated, it's about the third time that either you or "friend" told me that my symptoms correlate to thyroid. Actually, if you look at a list of hypo and hyper thyroid symptoms, I have about 3 symptoms from each side which does not seem likely, I don't think you can be hyper AND hypo thyroid at the same time? I did check it out and I did confirm that it's not one of my problems. I would actually prefer that it was because I'd have a clear direction to go in as opposed to spending all my time searching for relief without taking medications with terrible side effects. If it was thyroid, I would assume that an SSRI anti-depressant and exercise should not have a dramatic effect as it did for me, especially since I'm not depressed.

It is so hard when you find something that works for you to not assume it's going to work for everyone, this illness seems to be quite different for each person and everyone seems to respond differently to treatment. I wish it were more clear cut, that we could be diagnosed with a blood test and treated with one line of medications, unfortunately it doesn't work that way.

I am EXTREMELY grateful to everyone who has posted about the thyroid symptoms and tests, my doc "forgot" to run them and only noticed when I brought it up. If it had been thyroid related, I could have gone for years being treated and not had it caught!!!

Old 03-01-2001, 02:55 PM   #20
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Oh sorry I didn't post why I wanted the TSH numbers. There are a few of us who are trying to "lobby" the Health Board re: the TSH criteria. The Brits have come up with the top end being 2 and the American thyroid *** . has come up with the top end being 3 (accompanied with symptoms, history etc.) Where I am (Alberta) a Health Board sets the numbers.(Socialized medicine) So Dr.'s can't do anything if you fall in the range. They could be sued for malpractice so they follow the rules even if they feel it is thyroid. We just wanted to get a feel for how many people have been diagnosed with FM that have a TSH over 2 or even 3. It could take years for the Health Board to change the criteria and I feel a lot of people are suffering needlessly because of the number thing. I know people who have been diagnosed with FM and they have never had their thyroid checked. I know the numbers we get from this board can't be used in our research we submit to the Board but it's just background.

Old 03-01-2001, 05:27 PM   #21
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JB- If it's under 1 can we stop worrying?

I went to my allergist today, I thought he had run the full thyroid tests but apparently I never went and got it done, they didn't have results. I really don't want to have more blood drawn if it's not necessary.

Old 03-01-2001, 09:23 PM   #22
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Well, Tree Frog has to keep her TSH between .3 and .34. If it is over then she gets the symptoms back. That's why I was asking FRIEND about the TRH test. It for sure tells you if your thyroid isn't working. Kind of the definitive test for thyroid. I'd ask for that one and then you can know for sure if it is or isn't your thyroid. Tree Frog had that one done and it showed hypothyroidism and they still wouldn't treat her until she demanded a trial medication. Where I am they won't even give you a trial.

Old 03-02-2001, 05:01 AM   #23
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JB, Calgary and Toronto that's where I use to be from and most of my family still is. Now, I have lived here in The States for many many years. As I posted before mos. ago. My TSH in is the 2's and I was on thyroid meds for about 6 mos. I was sick as a dog on it. I got worse. We changed the dose all that. We have said thanks. Why don't you go to a doc. in the states sometime and get thoses thyroid meds and try it for your self I have seen that bus loads are take from the states go to Canada for cheeper prices on the same meds sold here. My mother was on thyroid meds for 12 years and then when taken off. She felt much better of the thyroid meds and could keep some weight on went from 95 lbs. to 105. So we here have tried and it was the wrong tree. But, as we Keep saying test it all out.

Old 03-02-2001, 10:20 AM   #24
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JB - is it .3 or 3.0 ?

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