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Treating Hormonal Changes/the Irony of FM
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JustJilli posted:
Hi,
I contracted FM last year as a result of battling with RA. I got the RA under control with Rituxan, but then had to battle the FM and the retroviruses like EBV and shingles. It's been fun.

However, now I'm trying to get my hormones back in order, but the doctors seem to disagree about what is best.

First, let's take the thyroid. Like many FM sufferers, my thyroid has taken a hit, but this was only discovered after I did my own research. My T-3 level was low, but what was really killing me was my REVERSE T-3, which blocks the absorption of T-3. This was very high. The ratio of these levels was way out of whack, and as soon as I started taking straight T-3 (NOT synthroid, which will make matters worse, I think) I felt better. But this was a real fight, as my GP saw my thyroid levels as within the "normal range." And I still haven't found a place to get timed release T-3, which one website recommended.

In my research, I also found that sex hormones could be affected, so I had my GP test them. Even though they couldn't locate any testosterone in my system, my GP said I was in the "normal range" for a woman. My progesterone was also quite low, causing heavy periods. I have just started taking replacement hormones for these, once a compounding pharmacist interpreted the results differently from my GP.

However, I went up to Hershey Medical, and explained my concern to an endocrinologist to try to get an expert's take, and his response was that my chronic disease is causing these depletions, and that this was the body's response to protect itself during a time of crisis. I told him I was getting better and wanted to get my hormones back on track, but he believed that treating the hormones by providing hormone therapy would actually jeopardize the recovery. Is this true? Because I don't see how my adrenals (which were likely the first ones to go--too much stress), thyroid, and sex hormones will ever recover on their own without some help, and I'm tired of being so tired.

One thing I would like to vent on--the freakish specialization system of medical practice. Even my rheumatologist does not seem to know about the hormone aspects for FM. Isn't it a bit ironic that we over-tired CFS/FM patients have to see all these doctors to get a comprehensive treatment for our disease?

There should be a page on the WebMD site that lists tests that should be run for FM, and explains to GP's and to other specialists how to interpret them for FM patients (for example, the thyroid tests). Luckily, I have a research background, and I've been able to find things that can help (sometimes in the doctors' comments on WebMD articles--thank you, WebMD). But not everyone has the background, energy, or luck to do this. We need some help in educating local doctors about what to do. We're too tired to do this ourselves, plus find the justification to get these tests run.

Thanks for any insights on the hormonal issues!
Jill
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JustJilli responded:
For those of you who are unfamiliar with the T3 treatment, I wanted to point you to the Stanford Study . Sometimes you have to point out things like this to get your doctor to believe you.

Here is some information on Reverse T3 Dominance. Please note that regular pharmacies don't do time-release T-3. You need a compounding pharmacy.

T-3 significantly changed my energy levels. I would encourage everyone to have their reverse-T3 levels checked. Insist past the resistance--show them the Stanford study.
 
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Caprice_WebMD_Staff responded:
Hi Jill,

Thanks for sharing all this information. I hope that Dr. Pellegrino and others will share their thoughts.It's an interesting topic.

While there are no lab tests, etc., to determine Fibromyalgia, there are tests that should be done for anyone presenting with its symptoms:

Lab Tests - Fibromyalgia
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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JustJilli replied to Caprice_WebMD_Staff's response:
Hi Caprice,
Thanks for responding.

The trouble with the tests listed on WebMd is that they do not specifically say to test for reverse T3, which many doctors do not do. From my understanding, it is the ratio of reverse T3 to T3 that is out of whack in FM patients, and yet their thyroid levels will read in normal ranges, so doing a normal thyroid test will not work. With the Reverse T-3 blocking the T-3 receptors, the T-3 is not absorbed, leading to fatigue and weight gain. If the doctor tries to fix this with synthroid rather than straight T-3, the synthroid will produce more reverse T-3. only enhancing the problem.

The Stanford study on T-3 shows that the research community is taking this T-3 aspect of FM seriously, but I didn't find anything about the possibilities on WebMd. When I went to my GP, she said she didn't think she had ever ordered a reverse T3 test, and the labs also needed to look it up. We need to raise awareness. A lot of people may be helped.

I'm hoping Dr. Pellegrino or Dr. Caudill-Slosberg will weigh in on these treatments. If WebMd could put something on that test page to get reverse T3 tested, that might enable some people in more rural areas to convince physicians that this is an important measurement. Important in this is the ratio of reverse T3 to T3, not whether the numbers themselves are in "normal" range.

Jill
 
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JustJilli replied to JustJilli's response:
Hey Caprice--could you change the title of this discussion to "Treating FM with T3 and other Hormones" as I think that is more my focus.
 
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Caprice_WebMD_Staff replied to JustJilli's response:
Hi Jill,

We do not edit our members' posts and, in this case, it's probably best to leave it anyway. It's an interesting subject line, has already been sent to Dr. Pellegrino, and forwarded on to be featured from elsewhere on the site.
We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell
 
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booch007 responded:
I have little to add to your research background here, I am just a nurse. I will say that in my part of the world (cardiology) that which we see in research doesn't always move forward into practice. (Like IV HDL for patients....didn't go well)

Or testing our Substance P levels.....

I am interested in the answers Dr P has here. He often will research before writing so it may take a bit. BUT HE always gets back to us.

We just had 2 staff members with endocrine needs. One is graves disease and the thyroid as I am finding is such a complex little guy (we take so much for granted when we are healthy). What was the kicker for her was the antibodies she had.

There are physicians that are treating us with synthroid with normal lab findings and seeing improvement, but it is such a specialty, I am not big on GP or Internists getting involved here. As you say there is many hormones that are interconnected and it is challenging. That is how specialties were developed (you can't know it all)

I hope you get the help you need, and we all learn from this thread. Please keep bumping it back up for us to see, until Dr P reads and writes to it. Thanks so much, Nancy B
 
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Mark Pellegrino, MD responded:
Hi Jill,

Thank you for you very well written, interesting, and timely posts! You definitely have reasearch and writing skills. I learned a lot from reading your info and following up with additional research of your links. You are certainly correct in the lack of awareness, or need for it, regarding this topic.

Fibro is certainly complex, and the hormone dysfunctions can be mind boggling to try to understand and treat. This can be intimidating and confusing even to supposed experts like me.

As you know, everything is interconnected: the central nervous system, autonomic nerves, neuroendocrine and immune systems are all intricately weaved together and modulated by endless feedback loops. If you disrupt one piece of this puzzle, everything can seem to unravel. Fibro is the equivalent of reaching in and scooping out a handful of pieces!

We know the importance of the thyroid in our fibro symptoms, and are only recently beginning to better understand the role of reverse T3 in some patients' fibro symptoms. Measuring reverse T3 is not presently a part of the "normal" thyroid lab screening. Maybe it should be.

Medicine has always evolved as research and education lead the way. Doctors' behaviors, on how they diagnosis and treat specific conditions, for example, change over time once the compelling evidence mounts. We are still in the evolving stage with understanding and treating fibro, including the thyroid connection.

I would like to see more emphasis on checking the reverse T3 as part of the specific thyroid/fibro work-up, and looking more closely at the connections to other glands ie adrenals, pituitary. I would like to see "low normals" treated more aggressively in those with fibro. I would like to see more use of Cytomel (liothyronine, T3) and compounded long acting T3 and less use of thyroxine or Armour thyroid. I would like more "comprehensive" hormonal treatment strategies that focus on multiple puzzle pieces.

I'm confident we will soon get to wherever the fibro research/education inevitably takes us....but sometimes it seems to move so slooooow! In the meantime, I'm going to be a little more vigilant about checking the hormone dysfunctions, and will educate my colleagues a little more. (I think I just heard them sigh!)

Thanks again, Jill.

Dr. P
 
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humblep replied to JustJilli's response:
Hi Jill,
I understand how you feel trying to get physicians to understand and believe you. I don't have that problem anymore but I did for years.
I haven't posted for a while so am just stopping by to say hi to all. Warm wishes for decreased pain, increased energy decreased depression, and increased love and joy in your lives.
 
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humblep replied to Mark Pellegrino, MD's response:
Dr.P, I miss you. Can we meet in some quiet corner of a restaurant and hide behind the menu?

lol just kiddin ya, but I do miss ya.
 
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VaniJoy replied to JustJilli's response:
You also need to have your T-4 tested, Jill, Especially if you have any trace of Native American ancestery. Those of us who do (my mom is only 1/16th Cherokee) can test normal otherwise but still be depleted. You can be tottering on the lowest number of normal range, feel all the symptoms of low thyroid and the Doctors still don't like to give you hormone replacement. They just raised mom up to 125 and her lvls are still borderline.
 
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JustJilli replied to VaniJoy's response:
Thank you all for your responses! I appreciate the support and nice words. It's great that WebMD hosts this community for we the afflicted.

I guess I feel like one of the lucky ones, who happened to have someone tell her about the Reverse T3 issue related to FM, and who finally got the treatment to subdue--somewhat--the fatigue. I hope some other folks out there take the initiative to get tested, and to get through the CFS that often accompanies FM.

Good luck everyone!
 
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1Bluesky replied to VaniJoy's response:
Hi Vanijoy,
I wondered how you made the T-4/ancestry link. It is very interesting and I'm just curious about diseases and ethnic links and why it happens. It started when I learned about sickle cell This is the first one I read about Native Americans.


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