How many of you have Hashimoto's

Discussion in 'Fibromyalgia Main Forum' started by EricaCFIDS, Aug 23, 2008.

  1. EricaCFIDS

    EricaCFIDS New Member

    and when did your symptoms start? Was it with your other symptoms or did it come first?

    For me, I now recall a large rash I had that I thought was a spider bite in 1991 or 1992. Shortly after that, I started experiencing the classic hyperthyroid symptoms and this lasted for several agonizing anxiety ridden years.

    Somewhere along the line, I switched to being hypothyroid. It wasn't until after my daughter was 8 months old and my body was shutting down that I discovered I was hypothyroid. (I had a TSH of 223.0!)

    4 years later an Endocrinologist ran a bunch of tests on me when I was starting to get my sickest. She signed off on all of them saying I was "normal". 2 years after that I got my records and saw that my TPO (thyroid peroxidase antibodies - test for Hashi's) was 455.0 (normal range was <35). I definitely had Hashimoto's. Why didn't she tell me?

    Fast forward to last year....I finally saw a doctor that understood how to treat me (and also diagnosed me with CFIDS). I finally got the right tests done (Free T3 mainly) and started taking compounded T3, lost 40 pounds and felt better energy and mood. This also gave my adrenals the help they needed. What a relief!

    Now to the present.....I have recently been diagnosed with chronic lyme (hence the rash so long ago!) and told that Hashimoto's is a "classic" response to it. Wow! I was stunned.

    I am very curious how many of you have Hashi's? My Mom does and she doesn't have lyme, but she's also well (but too cold, tired, etc. and Synthroid isn't working at all for her).

    I'm not saying it's an automatic with lyme. It clearly isn't for my Mom. I just wanted to see how many of you have it and what you remember about it affecting your health history and your illness? I'm very interested in the thyroid and want to learn more and help others.

    Thanks for sharing!

    All the best,
  2. Dlebbole

    Dlebbole New Member

    Hi Erica, I am 47 now and was diagnosed with HT when I was 28 - after I had my first child.

    I too went through the hyperthryroid phase (lost 20 pounds in one month!) and then to hypothyroid. When I started treatment for it, it was like flipping a light switch. Felt lots better in terms of energy (at that time).

    I have seen Dr. Salvato and am being treated for lyme. So that fits for me too, DE
  3. kjfms

    kjfms Member

    I have hypothyroidism secondary to Hashimoto's thyroiditis. Thyroid disease runs in my family.

    I also have a residual pituitary tumor and I am pretty sure it is the reason my TSH has now gone to <0.01

    I did not develop it until years after I was diagnosed with FMS.

    I am sorry you have gone through so much and I hope it will get better for you.

    Take care,

    Karen :)
  4. mujuer

    mujuer New Member

    I was diagnosed with Hypothyroid but they said it wasn't Hashimotos. I had all of the classic symptoms of low thyroid clear to the lost of outter eyebrows but my test always came back within a normal range. My Dr. got real suspicious though and sent me for an ultrasound on my thyroid. Bodda boom, bodda bing, there it was big as day, a multi-nodular goiter caused by low thyroid.

    I don't understand why they just don't do a sonogram on everyone with thyroid issues since the blood test is simply not accurate. Now I have to have it measured every year to make sure nothing has grown or turned into something else. P
  5. TeaBisqit

    TeaBisqit Member

    Bit by ticks at age eight. Chronic Advanced Lyme. Hashimotos symptoms started to show years and years later. The first time my thyroid actually hurt wasn't until my mid twenties.
  6. gb66

    gb66 Well-Known Member

    I recently had bloodwork done and my tsh test is normal. Is this the only test you need to see if you HT?
    I had an insect bite that looked like a bullseye, very red and itchy, prior to getting sick with cfs/fm years ago but have not had any Lyme testing.
  7. richvank

    richvank New Member

    Hi, all.

    Hashimoto's thyroiditis is very prevalent in CFS. Though I haven't seen data for Lyme disease, I would expect that it would be high there, too. The reason is that the Borrelia bacteria have been found to deplete glutathione in their hosts, and I believe that this is the link between Lyme disease and CFS, which also involves glutathione depletion in most cases.

    As I suggested in my 2004 AACFS poster paper, I believe that Hashimoto's thyroiditis in CFS comes about because glutathione goes low in the thyroid cells. These cells normally make hydrogen peroxide as part of the pathway for making the thyroid hormones. When glutathione goes low, these cells lose their protection against this hydrogen peroxide. It reacts with thyroglobulin molecules, and this produces molecules that the immune system sees as foreign. It therefore mounts an attack on them, and this produces autoimmune thyroiditis, which is Hashimoto's.

    As you may know, I have been suggesting use of a "simplified treatment approach" for CFS. This treatment was shown in a clinical study to benefit most of the patients who used it. I have now heard from three or four people who have reported that this treatment cleared their thyroid problems, so that they could stop taking thyroid supplements (with the cooperation of their doctors). The clinical study also showed that this treatment raises the level of glutathione, so I think this is consistent with the hypothesis I've suggested for Hashimoto's in CFS. The basic idea for it came from work by Duthoit, which I cited in my 2004 and 2007 papers.

    I recently posted a new poster paper proposing a link between Lyme disease and CFS, and I think it would explain why Hashimoto's might occur together with Lyme disease, also.

    Best regards,

  8. klarry

    klarry New Member

    I was diagnosed with fibromyalgia when I was around 40 years old (I'm 63), but did not develop Hashimoto's until I was in my 50s. My doctor would always mention an enlarged goiter, but it never bothered me, and all the tests came back negative. Finally I went to a doctor who ordered a specific Hashimoto's test. That's when I found out I had the disease. Because I had benign nodules on my thyroid the doctor put me on Synthroid to suppress the nodule growth (it worked), and I've had to stay on it ever since.
  9. richvank

    richvank New Member

    Hi, jaminhealth.

    From 1999 to late 2004, I encouraged PWCs to boost their glutathione by various approaches, including direct oral supplementation, IV, IM, amino acids such as NAC, nondenatured whey protein, nebulizing, and use of the liposomal glutathione products. These approaches did help quite a few of the people at least temporarily. However, with very few exceptions, it did not seem to bring glutathione up to normal and keep it there on a permanent basis. They had to keep doing these things to continue to experience the benefit.

    In October 2004, I reported this in a poster paper at the AACFS conference in Madison, Wisconsin. I wrote that I suspected that there was a vicious circle holding glutathione down, but I didn't know what it was.

    In December of 2004, Jill James and colleagues published a paper in autism that was very helpful to me. They found that in autism, glutathione was depleted, just as in CFS, but that it was associated with a partial block in the methylation cycle, which is located upstream in the metabolism from glutathione synthesis. I suspected that this methylation cycle problem was the other part of the vicious circle, and that the central biochemical problem in autism is the same as in CFS.

    In January, 2007, I presented the Glutathione Depletion--Methylation Cycle Block hypothesis for CFS at the IACFS conference in Fort Lauderdale. One of the physicians there asked me for a treatment based on this hypothesis, which he believed to be valid.

    With the help of Trina, who has posted to this board, I extracted the central part of the Yasko treatment, which eventually was boiled down to 5 supplements. I sent it to the physician, and I also posted it to this group and other internet groups.

    Early results with this treatment reported by people on this board, starting with Deliarose, suggested that it was addressing the putative vicious circle, and this eventually led to the open-label clinical study conducted by Neil Nathan, M.D.,which we just reported in a poster paper at the IACFS/ME conference in Reno earlier this month. I posted the paper on this board recently, but the tables and figures don't transmit, so if you want to see the paper in its entirety, you can go to the files section of the yahoo cfs_yasko group's website, or you can email me at richvank at aol dot com and I will email you a Word copy as an attachment to an email.

    This clinical study was very successful, in my opinion, and I think it provides support to the idea that a partial block in the methylation cycle does form a vicious circle with glutathione depletion in CFS, and that this vicious circle is what makes CFS chronic. We found that glutathione rose when we supported the methylation cycle, even though we did not supplement it, or provide additional amino acids to make it. The treatment was beneficial to most of the patients as determined both by lab testing of the methylation, folate, and glutathione parameters, and by the self-rating of symptoms by the patients. The study lasted a total of 9 months, and it appeared that the patients were continuing to improve at that time, so we can't say from this study how long the improvement will continue, or what total degree of recovery will be obtained. As usual, more research is needed, but I would say that things are looking good.

    There was a lot of interest in this study at the conference. At one point I was trying to answer questions from three people who were firing them at me more or less simultaneously. I gave away 100 hard copies of the paper, as well as the poster copy itself, and have been sending out copies to others who requested emailed copies.

    Several physicians expressed interest, and some said that they would try the treatment on some patients to see what response they get.

    The physicians who have been using this treatment for a while now are reporting that it is an important part of their overall treatment protocols. There is a small number of people who have reported that they are completely well after using this protocol. However, most of them also dealt directly with other aspects of their illness, including mold illness, Lyme disease, and viral infections.

    My impression at this point is that this vicious circle is indeed the core biochemical issue in CFS, and if a person uses this treatment early in their illness, it may do the whole job for them. However, if they have been ill for a long time and have entrenched infections, or if they have mold illness, these other aspects will need to be dealt with directly, in addition to lifting the methylation cycle block.

    I'm going to repost this response in a separate thread, so that others may find it more easily, if they are interested.

    Best regards,