Tree Frog has posted a thyroid symptom checklist on the thyroid board under the message "Information Archive" Worth taking a look. Wouldn't it be great if you had a thyroid problem instead of FM. Thyroid is treatable.(if you get a Dr. who knows the new thyroid criteria)
If everyone on this board had a Thyroid deficiency ... Fibromyalgia would be non-existent....as far as misdiagnosis goes.....latest research shows a growing number of previosly diagnosed Fibro patients as having MS....unfortuneately not as easily treated....
Hello,Scoobs told me she posted and I came to check it out. Hi all. Just stopped in to see what was up. You all know I was tested for everything and just have FMS and CFS. BUT, YOU MUST check it ALL out. I have always said list, every symptomeven sm, all your q's and don't leave till you get your q's answered all of them. I am sleeping great! I can't beleave it it's been so long. It's the meds I wrote about below the Kolonapin and Nuronton. I sleep throught the baby. Luckily hubby gets up. He is doing worse and was out of work for a short while. Now that's more work. Keep researching, researching, researching and write down every thing no matter how sm. Take all the tests you can and ask if you must for them. If you don't have a doc. that listens then get a new one. Be strong you must for yourself. Get that protective instink going. I have said before I have heard of some that have a remission and have not relapssed. I also know of many who don't and some get really bad and are on disability. There is a post some where if not deleted. That gave info. on how to get free or reduced cost meds. I posted before that most doctors know their namesand programs since they sign the request and script. Take good care all, Kim P.S rRead the posts from the first to last take notes or print out. There is some great info. and sites people have posted. Keep searching.Thismessage has been edited by moderator1 (edited 02-24-2001).]
[This message has been edited by kim (edited 02-25-2001).]
I think that there are different causes and triggers to FM. Some people have underlying Thyroid disorders, some have sleep and Seratonin imbalance, some have sugar/hypoglycemia/yeast others may have hormonal imbalance, allergies or combinations of all of the above. I think a signifigant percentage of people do not have "FM" by itself and that's why different people respond so well to the different treatments. Thyroid treatment will work for someone with "Thyroid FM" but not for someone with "Allergy FM". Underlying is the genetic predisposition for FM but I think that if you get the main imbalances then many of the symptoms will improve. Some people may even have combinations such as Allergy/Seratonin FM. That's why I put the post on the other day about the different "types" of FM. It caught my eye.
This would explain why different doctors help different people (with FM).
This would explain why we all have some basic symptoms in common but then some have added symptoms that others don't have.
This would explain why some people respond so drastically to Guifenisen while others respond to Thyroid meds and people like me take an SSRI and have their symptoms improve almost 50%!
I'm not a doc, not an expert, it's just my pet theory after a lot of reading and chatting and I am really listening to what everyone is saying and this is what I see from this board.
Cico, That makes sence to me. I have read a lot more reports recently about people having one disease and then they get FMS on top of it. They go by when what symtoms started first to last. That could very well explaine it. Kim
Nice to see you Kim!! I had a long talk with my dad today and he's going to bring me his light system from when he was treated for SAD (he's now on an anti-depressant). He said to start slow or it may knock me into orbit (gosh, I was planning on a couple of hours in front of the super heavy duty lights, thought I'd work on my tan :rolleyes . He didn't have sleep problems, he had other Seratonin related problems but he said that the lights DEFINITELY worked for him (and he's a whiner like me, lol). I'll let you all know how it goes! I spent most of today in the car, my legs are screaming, I'm heading for the tub and then the exercise bike. Ciao!
I have to agree with what Scooby was saying (or not saying). I think that only a small percentage of people with FM have an underlying or hidden Thyroid disorder, maybe even up to 5% but I wouldn't think even as high as that. Another 5% with Seratonin disorders and 5% with some kind of sugar/yeast disturbance, and maybe another 5% with some kind of an allergy/or hormonal trigger. That would be 15-20% of all FM diagnosis being misdiagnosed and/or having an underlying condition that makes the FM worse. That would be high but a little more realistic than 90% having thyroid problems. I think that all of us have some kind of genetic predisposition to developing FM though!!
My symptoms don't really correlate to well to hypo- or hyper- thyroidism but I do match up very well with the Seratonin/sleep and yeast/sugar connections. A little too well!
Again, I'm no expert, this is just where I'm seeing all the connections getting made and its the ONLY that that's made sense to me so far. Especially after listening to everyone here!!
Originally posted by cioc1212: ....He said to start slow or it may knock me into orbit (gosh, I was planning on a couple of hours in front of the super heavy duty lights, thought I'd work on my tan http://www.healthboards.com/ubb/rolleyes.gif
Yes! by all means! Smack my hand for not mentioning that! Way to go, Dad! See, THAT'S the trouble with these boards and looking for medical info. Since it's not a clinical situation, it's easy to forget the 'little' details, especially when you're a bear of very little brain (me, not you).
My apologies, cioc1212, and, thus why I add disclaimers to things that smack of medical advice!
Hey, Kim! Glad to see you back again!
Let Miracles Replace all Grievances
I wonder if you have any kind of evidence behind thinking only 5% of FMers actually have underlying thyroid disorder, etc.
If so, will you please post it?
Or is that just a guess?
I am just asking, because according to research behind the numbers of people NOT properly diagnosed with thyroid disorder or disease, I sincerely doubt that number would be at all correct.
See the archives of research on about.com, Thyroid Forum, for the accurate numbers per population. (I don't have that link.)
You will see that MANY thyroid patients were first diagnosed with FM. Ask on the Thyroid Forum how many were first diagnosed with FM.
I think you will be surprised.
FM is a list of symptoms with a label. All the word means is fiber-pain. There is no degeneration or destruction of body tissue, such as in actual disease.
That is why there is no understanding of fiber-pain or solution. Any number of things cause fiber-pain, including lack of sleep, anger, frustration, disease, vitamin deficiencies, lack of muscle tone, over-exertion, physical & emotional trauma, and so on. And any human being can have fiber-pain. It is not an actual disease, it is labeled a disorder.
Saying only 5% of FMers have thyroid problems is misleading unless one KNOWS this to be a fact, and may discourage those who do have this problem from researching so they can discover theirs, since thyroid imbalance is sadly one of the most missed diagnoses in America.
JB - just guessing on my part, as I said, I'm certainly no expert. But to say that more than 50% or as high as 90% of people with FMS have thyroid problems is a bit ridiculous, the medical profession is not that blind and if we all suffered from thyroid then we'd all be cured and happy by now. My thyroid levels were fine and my symptoms don't match up very well with the thyroid symptoms on the thyroid board. Many of the other people who've posted their symptoms here don't seem to match it either. I think that a small percentage might have hypo/hyper thyroid but to say it's a high percentage is a little odd--why then wouldn't our symptoms and tests show it? It's fairly obvious that we (FM diagnosed) all have different triggers,different symptoms,different sensitivities and different responses to medications and treatments. How then do you explain all the difference if we all have thyroid problems? How do you explain the people who have had ALL the thyroid tests and have no thyroid deficiencies yet still have FM?
Your theory just doesn't seem to make sense or hold water. The medical profession is a bit slow but not THAT slow....they would be onto this miracle cause of FM by now, that we all have inactive or overactive thyroid.
I can see that a small percentage of people may have an underlying thyroid issue but I just don't see it as a huge issue. It is important enough that people get their blood levels checked and look at the information on the site you recommend but I just don't see thyroid as the solution to FM problems. Sorry. And again, just my humble opinion, everyone is free to judge for themselves and it does look like most people here have done so and ruled out thyroid, except in one or two cases. I always try to keep an open mind, I considered this and at least for me, the tests,symptoms and reactions to meds tend to rule out thyroid for me. Many others on the board have also ruled it out.
Sorry if I repeated myself, it's late here and I've been avoiding the pain and stiffness that have been creeping in when I sleep. But I can't delay any more so it's off to zzzzzzzzzzzz.......land for me. I hope. Night!
It is absolutely wrong that thyroid is a minor issue in health, OR rarely similar to FM symptoms, OR that it is not being SIGNIFICANTLY missed in diagnosis.
Any one person may have any, all, or no symptoms of thyroid imbalance. This is not a guess, it is a thyroid fact. Looking at a list does not diagnose thyroid imbalance.
Like you said, we are all free to post on this board, and if one does not like the post, they are free to disregard it, or answer it.
Don't just take my word for it, research it, OR you are free to disregard the info I share.
Telling what I have to share is not forcing anyone to accept it.
One of the board guidelines is healthy debate. I debate this issue because I care about posters finding solutions, just like you. And I do know of this very real possible solution.
There has been a
"MAJOR REVERSAL AT AMERICAN ASSOCIATION OF CLINICAL ENDOCRINOLOGISTS REGARDING TSH LEVELS AND DIAGNOSING HYPOTHYROIDISM"
The American Association of Clinical Endocrinologists, typically a
conservative proponent of the "your thyroid is normal when you are in the 'normal range'" theory of thyroid diagnosis and treatment, has had what constitutes a fairly dramatic change in its approach.
The January 2001 Thyroid Awareness Month information says: "Even though a TSH level between 3.0 and 5.0 uU/ml is in the normal range, it should be considered suspect since it may signal a case of evolving thyroid
underactivity." (AACE Press Statement, January 18, 2001).
"Most conventional physicians rely almost exclusively on the TSH test for diagnosis, believing that a TSH level in the so called "normal range" indicates a normal thyroid, and does not warrant treatment.
The Colorado Thyroid Disease Prevalence Study, released in February 2000, estimated that as many as 13 MILLION AMERICANS
had undiagnosed thyroid disease. The study was based on defining hypothyroidism as a TSH above 5.1 uU/ml. If using the AACE's
parameters, MANY MORE than 13 million Americans are likely to be defined as hypothyroid. Many people who are suffering thyroid symptoms may now be considered hypothyroid and eligible to be diagnosed and treated -- a development that could finally prevent suffering for many millions of people who are presently suffering
from undiagnosed and untreated hypothyroidism. In addition, many
endocrinologists have given hypothyroid patients only enough thyroid hormone replacement medication to lower TSH into the high-normal range. If levels above 3 are considered suspect, physicians may reevaluate their dosage strategies, and provide the high doses needed to keep patients at TSH levels under 3."
Mary Shoman's Thyroid News, #46
Question to everyone-
Do you know your TSH?
How do you know that is YOUR optimal thyroid level? Wouldn't you want to be sure?
Just a question,
[This message has been edited by moderator1 (edited 02-26-2001).]
I have read that out of the fms dxed people that 2-3 percent really have an underlying thyroid disorder. I also asked the endrocrinologist. She told me that this is true. She also said that there are other diseases to that are thought tobe fms or cfs. She also answered my question that there are about 10-15 percent of fms dx's that are actually another disease and some developed fms afterwards so they have both problems. I think that the part that scares me is you could have a disease that could kill you. Well, we appreciate all you that don't have fms for posting information. We are pain.
[This message has been edited by moderator1 (edited 02-26-2001).]
Thank you Dale, I didn't know that, I was just using good old common sense along with an educated guess. I also find it very scary that we could have an underlying illness that is getting overlooked. That's why I got copies of my bloodwork and have been asking my doc about specific tests. I've found that some were never run so I'm glad I was told here to ask or they would have been overlooked!!!!
Never assume......always ask. And for gosh's sake, take control of your own healthcare, no one is going to care as much about it as you are!!!!
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).]
"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.
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.
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!!!
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.