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Hypothyroid vs. Fibromyalgia

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Posted 8/7/2008 1:50 PM (GMT 0)
Hi all!

 

A little background info about me:

 

I was hyperthyroid (I don't know for how long though) and then all of a sudden in Nov. of '07 my neck got really huge. I look like a buck in rut! I went to the dr. and he said my thyroid had a goiter/nodule. That eventually lead to surgery in Dec to remove half the thyroid with the nodules. It had supressed the other half of my thyroid but the dr.s where hopefull that once they removed the nodules it would pick back up. I don't know if it did.

 

So I became hypothyroid after the surgery and they gave me synthroid 50mg to take. Sometimes I would feel ok and other times not so good. I went to specialist and 2 different GP. My TSH is always around 1.25 - 1.50 in a range of .3 - 3.3. So they say I am normal and that all my aches and pains isn't related to thyroid problems. I do not think they ever did any other test like the T4 & T3, even after asking them to. (which is why i fired that doc, but thats another story)

 

I strongly believe my problem is with my thyroid. I think I need some T3. That's why I've been in denial about having fibro. It's hard to distinguish between the 2 because the symptoms are alike. So if they already know I am hypo, then why won't they treat me with something else, instead of just saying I am fibro? I was perfectly healthy before the thyroid. Very active, skinny, hard worker. Now I went to pot!

 

Anyways, the only reason I think I may have fibro is because I have about 6 of the "tender" spots. I have no idea how long those spots have been tender though.

 

One interesting bit of info that a nurse gave me was that I need to be on brand name thyroid meds because with generic, you get it from different companies and it may not always be the same strength. So I ponder over this and I'm thinking maybe she is right, because some months I feel fine, with minor joint pain. Then some months I can't get up. But I also know fibro comes and goes in flares. So you see my confusion here? LOL

 

Anyway, I'm going to a new dr. soon and I'll tell him exactly what I think. Hopefully he will give my body what I need, treat my symptoms a little better than he will treat the numbers.

 

I would love to hear from people that has both and how the dr.s are for sure you have both. I also want to know what people with hypothyroidism is taking.

 

Some days I am in denial about having fibro and think its all my thyroid and that I just have to find a doc that will listen. Then the more I read about fibro, I'm like, thats exactly me. I'm so confused. The rhuemy did all kinds of test and he dx'd me with fibro. He also knows how I feel as far as thinking it's my thyroid. He says it's both.

 

Confused,

Chelle

Posted 8/7/2008 2:22 PM (GMT 0)
I take generic synthroid. Doc just ordered a new TSH for me and I had the blood drawn yesterday. Some peeps swear by Armour thyroid (it's made from dessicated pigs' thyroids) and some do just fine on generic.

Accepting the fatigue and pain that goes with fibro takes some peeps longer than others. I've had symptoms of fibro for my entire life so I don't know anything else. I used to watch gymnasts and ballerinas and think they must be like the Little Mermaid, suffering pain with each move, and so brave to do what they did. I thought everyone hurt all the time and felt beyond tired.

Now that I know I'm different I just KOKO (Keep on keepin' on!) and do my best. If I'm too tired I sleep for a bit. I also check that I've been taking all my vitamins and malic acid. I also swim at the YMCA, just about 1/3 mile, a few times a week. Enough to keep me going, not enough to wear me out.

There seem to be cycles to this disorder and if you can ride them out, help your family understand and be patient with yourself you can do this. I have a friend on the diabetes forum who has recently had both of her legs amputated. She is an example of someone with true grit and when I see her posts my fibro seems small and minor. That's where I get my strength... from others who are much worse off and keep going in the face of loss.
Posted 8/7/2008 2:33 PM (GMT 0)
Hi Chelle. I'm hyperthyroid also. Diagnosed with nodules. I take Levothyroxin 100mcg. I've thought the same as you. And pursued it as far as a specialist one time.    I just thought if someone would listen and take the right tests they could get to the bottom of it and help me!    The specialist decided what I needed was a needle biopsy of my thyroid. With my dislike of needles (chicken)  O h, my I hope Sherrine doesn't read this post. You know how she is about chickens.    Anyway, that day the good Dr. had a young Dr. in tow and I suspect he just wanted to impress him with his expertise. So they laid me down on the table and stuck a very long needle in my throat. I never received any test results, not even a phone call, but you can be sure we got his bill.      Since that time I've not tried again...what's the use? Sorry to be so negative. I've just been around every corner and turned over every rock looking for a cure. Now I just deal with the symptoms. And live for the day someone will really find out what is going on with us.    
Posted 8/7/2008 2:54 PM (GMT 0)
Chelle, I had a goiter when I was 17 yrs old and had surgery. Like you what was left did not produce enough so I had to go on synthroid. I lived a very active life up until about 10 yrs ago and raised three sons, I am 58. So the thyroid is not my problem, I have fibro. I talked my doc into raising my thryroid med when we were doing all the testing to see if it would help and it didn't. I was also hoping it would be that simple.

 

Maybe it was the trauma of the surgery that caused the fibro. That has happened to some people.

 

I think the fact that you feel better sometimes than others is just the cycle of fibro. Sorry, I know this isn't what you want to hear.

 

luv and hugs

Marlee

Posted 8/7/2008 3:03 PM (GMT 0)
I've been wanting to give Armour a try but I can't find a doc willing to give it to me. I'm not giving up though. The little KOKO made me smile, because that's what my pastor says and he is awesome, so it reminded me of him. :-)

I'm sorry you've had this for, well forever. That sucks. Your right about thinking of others worse off, I do that too and then I think how petty my problems are. Don't get me wrong, I have bad days where I feel sorry for myself too though. I have a great support team with my family. My husband never complains if the house work isn't done or supper isnt fixed, etc. As a matter of fact, he can work 12 hours and I be on the couch and I ask him to get me something, and he will. He's amazing. I love him so much.

 

Chuzzle, I can't believe they didn't call you back with results, etc. OMGosh!

I had the fine needle biopsy done also. They stuck a long needle in my throat in 3-4 different places. nono   hehe  But yea, I know what you mean about just getting someone to listen! I was hyper at first, then after surgery I went hypo. If your hyper why are you taking levothyroxin? Oh and I had to have the surgery to remove the nodules, because it was affecting my breathing and I could hardly swallow. It was almost an ER surgery, but I got in fast. The surgery took a long time, because they have to be veryyyy careful not to cut the juglar.....LOL jk.. not to cut your vocal cords or your glands. My dad had quad by pass surgery that didn't take as long as my thyroid surgery LOL. So that shows you how important it is they take their time. And if you do have to have surgery to remove the nodule, make sure your surgeon has done many times before.

 

So my question is, are you really fibro, or is it all due to your thyroid issue? And DO NOT give up looking for a doc, if you don't take care of yourself, who will?

 

Here is a link to a site that deals with thyroid issues & fibro & the possible connection:

http://drlowe.com/

Here is some interesting info he has to say about both:

 

Most Common Cause of Fibromyalgia

The main cause of fibromyalgia has been determined. As I recently announced in France, in most cases, fibromyalgia is caused by inadequate thyroid hormone regulation of cell function. The inadequate regulation results from thyroid hormone deficiency and/or partial cellular resistance to thyroid hormone. Rigorous ="St(0);window.status='';return true;" onmouseout=Ht() href="http://drlowe.com/geninfo/hypothes.htm#">logical analyses of the available scientific evidence make it clear that this is the most plausible explanation of the cause of fibromyalgia. In The Metabolic Treatment of Fibromyalgia, I demonstrated that other proposed explanations of the cause of fibromyalgia (such as the ="St(1);window.status='';return true;" onmouseout=Ht() href="http://drlowe.com/geninfo/hypothes.htm#">serotonin deficiency hypothesis) are false. (See Dr. Lowe's recent summary of evidence supporting inadequate thyroid hormone regulation as the major underlying factor in fibromyalgia.)

Other Underlying Mechanisms

Other metabolism-impairing factors may also induce and sustain symptoms that lead to a diagnosis of fibromyalgia. All that is necessary is that these other factors impede the metabolism of the tissues from which fibromyalgia symptoms and signs arise. Such factors include a diet that contributes to impaired carbohydrate metabolism, B complex vitamin deficiencies, the use of beta-blocking drugs, and physical deconditioning. One such factor may not be enough to induce fibromyalgia symptoms. However, combinations of the factors may be sufficient. The fibromyalgia symptoms of most patients who come under our care are caused by a combination of such factors combined with inadequate thyroid hormone regulation of their tissues.

Basic Requirement for Effective Treatment

The metabolism-impeding factors responsible for fibromyalgia must be controlled or eliminated before a patient can significantly improve. When fibromyalgia results from inadequate thyroid hormone regulation, the proper form of thyroid hormone is indispensable if the patient is to improve or recover. The use of T4 alone (such as Synthroid) is seldom effective. Most patients require treatment with desiccated thyroid (such as Armour Thyroid), a synthetic T4/T3 combination (with 4 parts T4 to one part T3, such as Thyrolar), or T3 alone. Treatment is seldom effective when the clinician adjusts the patient's dosage according to blood TSH levels. Treatment results are likely to be no better when the patient's dosage is adjusted according to the free T3 level. Most patients improve or recover only when their thyroid hormone dosage is adjusted according to the responses of their tissues to thyroid hormone.

 

Anyway its something to ponder over. Not that I necessarily agree with everything he says, because I simply do not know. If I knew the answer, we'd all be better, LOL.

I'm still trying to decide if I truly have fibro or if its thyroid related. I do have some tender spots. I'm confused. How do ya'll know that you have both and that its not from your thyroid? confused   Is there even an answer to that?

Chelle

Posted 8/7/2008 3:43 PM (GMT 0)
Well as I've said in another thread responding to you I used to have hypothyroidism. I know that there are some symptoms that are similar. The fatigue and the aches are present in both disorders, but fibromyalgia seems to cover a much broader range of symptoms. With my fibromyalgia in addition to the chronic fatigue and pain, I also get ibs, troubles with sleep, difficulty concentrating, memory problems, dizzy spells, frequent fevers, and various environmental sensitivities(light, sound, temperature, chemicals, and odors). Now you don't necessarily have to experience all of the things that I do to have fibromyalgia, but it certainly would make a diagnosis more clear. A rheumatologist would be the best kind of specialist to see if you to find out for sure if you have it.
Posted 8/7/2008 4:50 PM (GMT 0)

Hi Chelle,

I have both fibro and hypothyroidism and take synthroid.  From the literature I have read, synthroid when taken properly is converted easily by the body to T3.  So there is no need to supplement synthroid with T3.  I recently found out that I had been taking my synthroid wrong.  It is to be taken first thing in the morning on an empty stomach, which I was doing, but, I was also taking my other meds at the same time. 
That is a no no.  It is to be taken alone.  I already knew that I couldn't take anything with calcium in it within 4 hrs., but I didn't know I couldn't take anything else. 

Since I have been taking it correctly it has been working.

Posted 8/7/2008 6:24 PM (GMT 0)
Marlee, I too have often wondered if the surgery brought on the fibro. And your right, I didn't want to hear that, lol. I guess I just have to really accept that I have fibro. I have too many symptoms, plus the rhuemy did tell me I have it. 

 

Gamma, I also read where T4 converts into T3 but I also know that in some people it doesn't convert enough. So until I actually have the complete test including FT4 & FT3, I guess I won't know if I am or not converting it properly. I did read that you take it in the morning on an empty stomache and that you can't take iron pills, birth control pills or anything within 4 hours, so I've been following that schedule.

 

Sigh, I must get out of denial and accept that I have Fibro and that it's not going away! I'm not depressed, actually I'm happy because I found a doc that believes me and doesn't think I'm crazy. I just haven't wanted to accept that I'll have this forever. I'm glad it's not something I will die from and I'm glad it's not dis-figuring, like some arthritis. There is much to be thankful for! Of course, I'm having a good day today, so this is easy to say.

 

I wish I knew what brings on the spells. I know stress can, but I was wondering what else could do it. Does anyone have that part figured out yet?

 

Chelle

 

Posted 8/7/2008 8:22 PM (GMT 0)
Well for me, in addition to being stressed, just being tired can cause flair ups so a lot of times things are worse for me at night.

I've also heard that various other factors like weather changes can trigger flair ups. I'm sure it's different for everyone and you just need to pay attention to when it happens to figure out what triggers it in you.
Posted 8/7/2008 8:45 PM (GMT 0)
Wow, everybody here seems to have hypothyroidism in addition to Fibro. Are there Fibro victims out there who don't have Hypothyroidism? Pls. Stand up and be counted. I too, have both, as well, I'm BiPolar, have tremendous difficulty swallowing, and therefore eat almost nothing. Also, I have a goiter and have IBS, and pack about 30 lbs. that won't leave my sides. I joke about being able to live a month in the desert and still weigh the same as I do now.Sometimes the aching and burning sensation all over my body keeps me indoors, under heating pads, just to exist. On my better days I pack in as much activity as possible, often paying a hugh price the next day or several days from overdoing it. I fight for my medication which my doctor says doesn't help the Fibro, but he is all so wrong. Today, I got my medicine after having nothing for pain for five days due to his undertreating my pain (not giving me enough to get me out of pain for the entire month.) I end up taking an extra tablet here and there b/c my tolerance is so high (having been on much stronger meds previously eg. Lortab, Vicodin, and methadone. Boy, I'm going to my next Dr. visit armed to the teeth with information, thanks to you guys. Also, that mouth and teeth sensitivity, another thread from yesterday, I also have that, big time. I wonder if someone can recommend a pain patch, one that can infuse the pain med, transdermally. I think that might solve the problem of running out of pain medication before the month's end. Thank-you 
Posted 8/7/2008 8:55 PM (GMT 0)
Chelle, I have to disagree with this Dr. Lowe who states that the cause of fibromyalgia "has been determined."  This is not true at all, which then makes me wonder what else is being fabricated.  Here are two links, one from the Mayo Clinic and the other from the National Institute of Health.  They BOTH say that the cause of fibromyalgia is unknown.  Just thought you should know this.

 

http://www.mayoclinic.com/health/fibromyalgia/DS00079/DSECTION=causes

http://www.nlm.nih.gov/medlineplus/ency/article/000427.htm

Sherrine

Posted 8/8/2008 2:22 AM (GMT 0)
Hey Chelle,         I guess I've got my hypo and hyper mixed up....all I know is the Dr. told me if I didn't take the thyroid supliment my throat would swell up. Oh, he also told me I could have my thyroid gland killed...radiation I suppose and then go on stronger thyroid pills. But he said it was hard to get it regulated right. Whew..      about the Armour I asked him to put me on that and he refused because he said it was too hard to regulate the dosage.      Whatever he is doing must be working pretty well because I'm not so tired anymore. That was my primary symptom...exhaustion.      I hope you find a good Dr and answers to your questions...Blessings
Posted 8/8/2008 11:48 AM (GMT 0)

20 years ago, I was diagnosed with thyroid nodules and low level hypothyroidism.  Meaning I was just "slightly hypo" according to the blood work.

I took Synthroid for 5 years or so, and I never noticed any change in myself, the nodules did shrink, tho.  I finally got my doctor to give me Cytomel along with the Synthroid, hoping it would do something.  It did not.

about five years ago, while still on Synthroid (NOT generic) I got a "bad batch" and went HYPERthyroid.  It was one of the worst experiences of my life!  I felt like I was going to jump out of my skin, it was just awful. 

I stopped taking the Synthroid alltogether, because I was afraid of going hyper again.  The hyper symptoms went away, and my body didn't seem to miss the Synthroid at all.  I got a new doctor about two years ago, and she freaked out when I told her I stopped taking my thyroid meds.  She ran the full battery of tests, and my levels were all still VERY slightly low.  She ran a thyroid scan, and I still have small nodules.  My reaction was "You mean I took that crap for 20 years, and it did nothing for me at all?  And you want me to keep taking it?"  I refused the RX for more Synthroid.

I believe that my thyroid was never an issue before.  I think this whole time I have had fibro.  I think the reason the Synthroid and Cytomel did nothing for me was because it wasn't what I needed. 

So now I am really curious about all of you who take thyroid meds.  Have you ever noticed a difference in the way you feel when you take them?

Posted 8/8/2008 12:32 PM (GMT 0)
Well back when I used to have hypothyroidism, the synthroid did help with aches I was having but never really helped with the fatigue much. I'm really glad I don't have to be on the synthroid anymore cause it made my hair fall out.
Posted 8/8/2008 2:23 PM (GMT 0)
Sherrine, I totally agree with you about Dr. Lowe, that's why I stated at the bottom I don't agree with everything he has to say, because I know there are people that have fibro that don't have thyroid problems. And if they knew what caused fibro it would be all over the news. Too bad though.

 

Sorry but I can't recommend anything because I just found out I have fibro and I don't know what works yet. I've tried a few anti inflammatories but they didn't work.

 

Wow Ms. Tify that sucks you had to take that all that time and it didn't work. I do know that even if your thyroid is a little bit off, it can throw your whole system way off. Like my levels have to be almost borderline hyper for me to feel better.

 

At one point, my TSH was 1.5 and I hurt and ached all over, so I went to my Endo and told him. He said my levels are perfect. I said well if I'm still hurting all over and still tired maybe we should increase my dose to see if that would help, so long as it don't make me hyper. So, reluctantly, he did, which then brought me to 1.25. I felt alot better and less tired and even though it's lower, I'm still within range, so its all good. He did tell me at that point that my aches and pains can not be related to the thyroid problem. Which is what lead me to the rhuemy, which lead to my dx's of Fibro. So even though increasing my dose helped with alot of things, it didn't stop it all. Most doctors do not want to give Armour because it is hard to regulate due to the short life span it has in your system. Most people have to take a pill in the morning, and by the evening, they must take another. However, from what everyone says on the thyroid forum, Armour is a blessing in their life. It helped with all the aches and pains and gave them some of their old energy back.

 

I think it's going to be very hard for people with Fibro and Hypo to get right because the symptoms are so closely related you can't tell which one your having trouble with. So my suggestion (and I need to follow this myself, LOL) is to get your thyroid meds right. If they are right, you will stop gaining weight, maybe even lose some and may help with some of the problems.

 

Good Luck,

Chelle

Posted 1/22/2012 6:11 PM (GMT 0)
I guess I'm the only one that takes Levothyroxine.  I feel like I need to be on synthroid again.  I don't feel like the Levothyroxine is giving me the same benefits as synthroid.  I started out on synthroid, but my pharmacy just up and gave me the generic one time.  My doctor says its ok, but my verdict is still out on this one.  I think all of us would do better on the name brand.  I'm not sure how easily that will be to achieve since i've been taking the generic so long.  I might bring this up at my next appoinment just for comparison sake.  I also have a goiter and nodules that are being monitored although he hasn't done an ultrasound in quite some time.  He just feels around my neck and says, "Nope no change doesn't seem to have grown any." I'd still feel better if he'd do an ultrasound again soon.  I also have fibromyalgia and IBS.  Every time I get my blood work done everything comes back normal.  He hasn't changed my dose in a long time.  I feel like he should adjust it some because I just don't feel at my best performance these days.  So if everything is normal in a number sense then what are we missing.  I think a lot of times all doctors rush through appointments.  I understand they have other patients.  I understand I'm not a new patient.  I still wish i could get a bit more time with my doctor than what I do.  I figure I wait half an hour I should get at least 20 minutes.  Not 10 minutes of a run down of things then see you in 6-9 months.  He's a good doctor I've been seeing him for years, but I can tell when he's rushed and ready to move onto the next patient.  He's not always like that though.  anyway, totally off topic.  So, really if everything comes back normal in the numbers and yet so many of us still feel iky and puny most of the time why is this.  I wish they'd come on with it and get a cure or something to help with the Fibro that's what complicates all of this.
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