Misdiagnosed thyroid disease

Discussion in 'Fibromyalgia Main Forum' started by BabiCati, Jan 11, 2007.

  1. BabiCati

    BabiCati New Member


    I thought this was good information. After I read I looked up my last blood tests and found that my TSH was 3.0 so I am in the limbo area with symptoms. I decided to make and appt. with an endocrinologist to find out for sure.

    Has anyone here with FMS dx later been dx with hypothyroidism? If so, what were your numbers and who diagnosed you?

    Thanks in advance for any info. or advice you can give me.
  2. barbwire56

    barbwire56 New Member

    Hi Cati! I usually post on another thyroid site and I was diagnosed with fibro back in '98. It evidently is a familial thing, but both of my sisters are fibro and hypothyroid and it's been taking doctors years (and I mean years) to get to a good diagnosis of hypo for me. I've been watching my TSH going from 1.27 to 2.50 to 3.65 (ranges are 0.3-5.6 with my lab)--a jump of numbers each year-- and the FT4 is 0.74 (0.7--1.12). Every pcp says "You're normal", an endo told me "You're normal", and I could have kissed the psychiatrist I saw last week who told me "Your T4 is right there at the lowest--you're hypothyroid". Why aren't they treating you???"! So, evidently it runs together at times and you can have both! I'm still in my quest to find a pcp or gp who will help me get on with my life because if it's not the physical pain of fibro, it's the mental anguish that the doctors put you through telling you all the reference ranges fit everyone. I pray that you have a good doctor who'll also send you to a rheumatologist for the fibro. A doctor last year said to me "You have all the symptoms of hypothyroidism, but we can't treat you until you read a 6!!!" I could be 400 lbs. by then! Be well and take care--barbwire--
  3. BabiCati

    BabiCati New Member

    Thanks. I have a good rheumy next week and plan on seeing an endo soon. I think the number explain many of my symptoms. I just want more energy. Thanks for your good wishes and I wish you the same.
  4. grace54

    grace54 New Member

    I spent years trying to get the DRs to up my thyroid meds but if you are within the numbers they wont budge. My endo said he likes to see the tsh around 0.5 and I was 3.4 at the time. I was on Armour and he didn't like that so he wouldn't change dosage.

    It wasn't until I went to a fibro/fatigue clinic that they changed meds as they saw I was still hypo. Unless you find a naturalpathic DR or someone who will treat the patient by their symptoms and not just numbers one can waste a lot of time, energy and money. I saw about 5 DR's before I was successful at treatment.

    Also unless a DR looks at the free t-3 and free t-4 they really can't evaluate how our body is utilising the hormone. Many depend too much on the TSH numbers. It seems some with fibro have a problem converting t-4 to t-3. At the moment I am using a slow release compounded t-3 and the verdict is still out if it is helping. I will report back when I find out more. Good health to all
  5. TKE

    TKE New Member

    ....can mean you have Hasimotos. The thyroid still works, but not all the time. This is why the TSH tests flux allot. It's harder to d'x than Graves & also harder to treat. Meds have to be constantly altered to keep things n balance. Eventually the thyroid just stops working.

    With Graves they normally remove the thyroid or do RAI to kill it & then put you on synthetic thyroid hormones.

    I have Graves. Woke one morning shaking so bad I couldn't hold a glass. Had RAI & have been onmeds ever since. Oh I had 3 Endocrinologists, all of which kept me way undermedicaed & I ended up with Fibro. One Endo told me my TSH was perfect...NOT!! It was 6.5...way above the top of the range. I need to be below 1 or I'm a zombie. I finally got my family doc to take over my thyroid treatment.

    Also insist the doc test your T3 hormones too. T4 hormone is converted into T3 hormone, which plays a big role in controlling energy, sleep, pain, temp, memory, etc.

    Do a search for Mary Shomon...her web site is the best on the net for Thyroid info.
  6. BabiCati

    BabiCati New Member

    I went back to the rheumy for bloodwork and my TSH number was higher-- 4.016-- she said it was normal and put me on Provigil to keep me awake and exercising. This is on top of everything else I'm taking including the Lyrica. What do you guys think? She said people with CFS take the Provigil. I started it today and I must admit I had more energy and as a result was in a better mood. I was still a little sleepy but I only took half the pill.
  7. roge

    roge Member

    > 2 should be treated in my humble opnion, especially if have all the clinical symptoms. In fact I wouldnt even look at the TSH but as others have said and look at Free T4 and Free t3 and revrese T3.

    The arrogance and ignorance and incompetence of most Doctors is beyond belief sometimes. Don't even get me started on the so called lab reference ranges.
  8. Hope4Sofia

    Hope4Sofia New Member

    I'm looking into this myself. I don't know what my TSH was on my last test but my DHEA was low (42).

    I also have an uncomfortable lump on my thyroid which I'm getting a second ultrasound on next week.

    I've had two low alkaline phosphatase labs - not sure what that means.

    I'm actually quite frustrated right now.

  9. Hope4Sofia

    Hope4Sofia New Member

    I just read that low ALP can indicate hypothyroidism.

    I'm seeing my Endo on the 7th. I think we have enough evidence of low thyroid and adrenal insuff to start some kind of treatment.

    I've never felt so consistantly sick in my life. Fatigued, nauseous, feverish. UGH!

  10. BabiCati

    BabiCati New Member

    for your replies. I haven't done the T3 T4 tests yet. I also read that with that TSH level-- tests should be done for thyroid antibodies. This is my next step and I've made an appt with an endocrinologist in the meantime. MY ALP was slightly elevated and the Dr. said it might be due to some inflammation in the body.
    [This Message was Edited on 01/28/2007]
  11. whoachief

    whoachief New Member

    I was treated for about 5 years for hypothyroidism prior to my CFS being diagnosed. For the last 6 -8 months I've been doing "better" with my energy level, etc (but not my sleeping!) Come to find out last week I went to urgent care following an auto accident for dizziness and they did some blood work. They called me to let me know my thyroid was "high" and I need to follow up with my family dr in 1 - 2 weeks. I have an appt on Friday with my family dr and I had to take my daughter to urgent care today so I got a copy of the lab report. My TSH was 5.430 and it shows the normal range to be 0.470 - 4.680. This probably explains why I've had more energy lately. LOL Oh well, I'm anxious to see what he recommends now.
  12. CanBrit

    CanBrit Member

    I was diagnosed with FM after a really awaful stomach virus I picked up in the summer of 2004. I think I'd had it a long time but this caused things to go into overdrive.

    My cholesterol numbers, fatigue, weight gain, etc had been happening for a few years to I think my thyroid figures were a bit screwed up for a while. Way back then, my family Dr though that a reading of 5 wasn't a problem. I saw an endocrinologist and they thought 5 was fine.

    In January of 2005, my TSH came back at 15. My T4 numbers were messed up too. My Dr believes the same virus attacked my thryoid causing Hashimoto's. There are autoimmune and thyroid issues right through my family coming from my mother's side.

    I'm currently on 75 mcg's of levothyroxine and it seems to be keepin my numbers TSH 2 and my T4's in the right range.
    My cholesterol is now normal too, however I am on a statin to help maintain that.

    Hope this gives you some info...



  13. BabiCati

    BabiCati New Member

    Thank you for you reply. Do you still have FMS or are you considered to still have FMS? I ask because some of the symptoms are so similar to Hashimoto's.

    I'm glad you are feeling better.

  14. CanBrit

    CanBrit Member

    Yup...I still have FM. Quite honestly, even though my bloodwork showed the thyroid was under control, I still didn't feel any better.

    That's mainly because FM caused worse pain and fatigue than Hashimoto's. I've also started experiencing more frequent nerve pain in my arms and legs. Apparently, that's also quite common with FMS. It started last summer for me.

    All the best,


  15. BabiCati

    BabiCati New Member

    Thanks, Eileen, for answering. That's too bad. I was hoping that once the thyroid was back to normal the FMS symptoms would lessen. I was hoping against all hope that the thyroid had something to do with it.

    I wish you the best and thanks again for sharing your experience.


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