hypothyroidism/FFC

Discussion in 'Fibromyalgia Main Forum' started by spazmonkey, Nov 27, 2005.

  1. spazmonkey

    spazmonkey New Member

    I've been diagnosed with secondary hypothyroidism from the Pittsburgh FFC. I was on medication for it for about 6 months and the doc wanted me to go off of it. The medication has helped me.

    Unfortunately, I cannot afford the trips to the FFC anymore and the medications because my insurance does not cover it and I do not have the cash out of pocket.

    I've been off my thyroid medication for about 2 months now and I started going back to my old sickly self. Thyroid probs run in my fam.

    Now, my skin is ultra dry, my hair is falling out (good thing I have really thick, long curly hair!!), my hands are starting to get all wrinkly (i'm only 27!), and I'm starting to go back to my anxious, withdrawn, unmotivated self again.

    I'm thinking about going to a doctor that will be covered under my insurance to help me with this. Does anybody know what kind of doc I should go to? I've had my thyroid tested tons of times before and all the other docs said I was okay. Obviously, there is something wrong if the treatment is making me feel better...

    Should I go to an endo or should I goto a gyno?? I know obgyn's sometimes are more sympathetic to women's hormonal issues.

    What do I tell my normal doctor??

    Our problems are so complex that I have such a hard time explaining my issues to doctors and then I wonder if they would even understand my condition at all...

  2. ilovecats94

    ilovecats94 New Member

    I'm 56 and I have had hypothyroidism since I was 9 years old. My family doc was dealing with it, but he kept my TSH around 5.5 and I never felt good.

    I asked my endo if he would take over my thyroid because I was seeing him for diabetes anyway and he did. He increased my med so my TSH is about .5 now. I think it may be a tiny bit too much, because now I have IBS-D.

    Just tell your normal doc that you want to see an endocrinologist for your thyroid problems. My endo also takes care of my high cholesterol too. He does my liver profile and keeps up with all the blood work.

    My hair has been falling out or not growing in or both, since I was in the middle of menopause in my 40's. I think it is just genetic. I've stopped stressing over it.

    Hugs,
    Faye
    Hope you will feel better soon!
  3. karatelady52

    karatelady52 New Member

    What you are saying is you want to find a doctor who uses the bio-identical hormones like the FFC does?

    I had this conversation with my sister who lives in TN and she said she has heard of a doctor there who is using these hormones.

    You may need to call around and find one who believes in the bio-identical hormones. Surely there are some doctors out there who use these...........................

    Sandy
  4. LISALOO

    LISALOO New Member

    Call compounding pharmacys in your area. They can tell you drs who refer patients to them. Some even have support on staff to help you fill them.
    [This Message was Edited on 11/27/2005]
  5. pepper

    pepper New Member

    it will take you to the thyroid-info site and you can search for the "Top Docs". There are several from Pittsburgh listed there.

    Some (rare) endocrinologists will give you bioidentical hormones. You may need to see a naturopath (I think they can prescribe in the U.S., can't they? They can't up here) or a GP who believes in a more natural approach.

    There are quite a few in your area that seem to do what you need.

    I am following this approach myself and found the dr. I am going to see on that web site.

    Good luck to both of us!
    Pepper
  6. elsa

    elsa New Member



    Our cases are unique in that the regular TSH test will not give a good indication of thyroid health ... specifically active T3.

    Professor Gunther Neeck, world's most renowned researcher ... hypothalmic-pituitary-thyroid axis dysfunction in fibromyalgia ... states quite straight-forwardly that TSH is not reliable in CFS/FM because of hypothalamic dysfunction .... That would explain why we often have all the big symptoms of hypothyroid, but no big test value numbers to match.

    Also a problem with us is the conversion of T4 into T3 ... we need to have the reverse T3 test also ordered to see how much free T3 is actually available to us for use.

    Unfortunately, many ppo's and hmo's decision makers long ago put down the guidelines of allowing docs to order the free T3&4 and rT3 only if the first round tests TSH, T3, T4 come back questionable. It's a catch 22 all the way around.

    This wouldn't be such a hugh deal if treating with T3 or a combo of both didn't have such an impact on how we feel on a daily basis. So many of our symptoms are also seen in low thyroid ... it just isn't fair to withhold treatment because of blood tests (that don't do us any favors) and decision makers indicating so.

    Chances of finding a conventional doctor to run these tests and treat a CFS/FM patient's low thyroid are low, but they are out there.

    Look into anti-aging doctors or other CFS/FM doctors. Dr. Teitlebaum has available on his website forms that you can download to order certain tests yourself. Also, some of the bigger labs will let you walk right in and get tested sans doctor's orders. These labs charge around 50% less for these tests then if they were ordered in a doctor's office.

    Cost is still going to be high, but not as high as FFC maybe. You can google the American Academy of Anti-aging Medicine and get a list of board certified doctors in your area. It's a start anyway.

    I love my primary care doctor ... he was right on top of things with the pathogen and sleep disorder treatments as well as quality of life medications ... but, by his own words he knew less the nothing in regards to the hormone dysfunction in CFS/FM and wouldn't know where to begin treating me. I appreciated his honesty in that ... and found someone who could help.

    These days OB/GYN's and to a lesser degree Endo's are getting bombarded with requests for thyroid treatment ... but not for the reasons you'd think ... Patients are running to them for the weight loss factor and energy buzz they can get. As a result, these doctors are horribly gun-shy.

    A friend did just this thing the other day ... I wanted to take her out back and "give her a tune up" ... Her wanting thyroid treatment for all the wrong reasons make our efforts for treatment that much harder to come by.

    I hope you can get this worked out ... my rx is compounded T3 and the cost is really very reasonable. Less then my co-pay for synthetic treatment. You can google "CFS, FM, and low thyroid treatment and tons of information and research wil come up.

    Elsa


  7. ulala

    ulala New Member

    does anyone know if they are two different tests and if so what are the differences? Thanks!
  8. elsa

    elsa New Member


    rT3 is reverse T3 and Free T3 is the unbound, available t3 floating around that can be called upon to do it's thing.
    Reverse T3 is something we don't want happening. They are two seperate things with their own tests. You would want Free T3 and FT4 plus rT3 .... Docs normally will order the total serum T3&4 plus the TSH level but not the second category.

    Gary Null has a good description of free T3 and reverse T3. It is a second way to evaluate the T4 to T3 conversion process. rT3 is an inactive, improper by-product of the conversion process and an elevated level indicates a malfunction in the peripheral aspect of thyroid system. (IE, an elevated number means you are hypothyroid ... )

    This conversion process takes place in tissues and cells of the body. Factors such as physical stress cause the body to convert less T4 to T3 and more T4 into rT3.

    This inactive by-product (rT3) further inhibits the conversion process by using up the enzyme involved in this mechanism, making it unavailable for any future correctly converted T hormones)

    Most conventional docs (but not all by any means) overlook the T4 to T3 aspect of the thyroid mechanism. Just not part of their medical model ... not taught.

    Conventional thyroid meds include synthroid ... which is synthetic and only contains T4. This explains why many of us with low thyroid and who are being treated with synthroid do not improve. It's not our T4 that is messed up ... it's the process of converting T4 to T3. What we need most likely is T3.

    Cytomel is a source of T3 ... and can provide a direct dose of T3 .... but it is not commonly rx'ed. Armour is natural and contains both T4 & T3. I take compounded T3.

    As an aside ... unbalanced, usually hypothyroid numbers can lead to developing coronary heart and other vascular diseases ... IE stroke, high blood pressure and memory/concentration deterioration.

    I hope this was helpful. It is very logical to me ... I have a difficult time grasping/accepting that too many doctors will not order these three tests and if they did would likely treat with synthroid which doesn't work on a large number of CFS/FM Hypothyroid patients.

    Don't get how the symptoms resolving with T3 treatment can be ignored.

    Elsa


    [This Message was Edited on 11/28/2005]