Hormonal Connection? There was for me.

Discussion in 'Fibromyalgia Main Forum' started by mystijul, May 31, 2003.

  1. mystijul

    mystijul New Member

    If you have been diagnosed with CFS or FMS, please, please get your hormone levels checked. I became sick at age 18 and remained sick for 10 years. Four years into it, I was diagnosed with FMS and a year or two later with CFS. Nothing I tried did much to keep me from feeling sick most of the day. For eight years I couldn’t hold a regular job successfully. The medical community didn't help me much until...recently a very progressive doctor found my thyroid to be enlarged, my adrenal gland to be hypofunctioning and my progesterone to be way low. Now with correcting those, I am almost completely better! (Still adjusting some levels).

    I had been tested for thyroid levels before, but sadly most doctors use the unreliable THS test that is not accurate and misses so many cases. If you are going to be tested, insist on the *Free T Levels.* And for treatment, the medicine that has the most T levels in it is Armour Thyroid, a drug many doctors don't believe in, so you may have to insist on this too.

    I would be happy to talk to anyone about my experience in hopes that it may turn their life around too. Please email me at mystijul@citynet.net, and be patient waiting for a reply, because I am not on the computer as often anymore, because I am having too much fun being active again :)

    Best Regards,
    Julie Thorn
  2. Princessraye

    Princessraye New Member

    I got sick at 29 and am 45. It is killing me to keep going. I work and that is about all I do.

    My Dr. put me on a low dose of synthroid because my thyroid was borderline. I feel no difference but hair seems to have stopped falling out. Thanks for the info on the test.

    What type of Dr. do you see?

    Thanks!
  3. mystijul

    mystijul New Member

    Wow a reply already! Princessraye, I couldn't figure out how to post to your reply. It looks Like I am posting to mine :)Anyway, my doctor is a general practitioner who practices allopathic as well as alternative medicine. I would recommend asking your doctor to switch you from Synthroid to Armour, if the Synthroid isn't helping, as I have seen many people on a thyroid list I am on do better on Armour (and perosnally,have seen my husband recover from lifelong chemical depression from switching to Armour). This is because Armour has more or the "T" hormoes than the other drugs. It is natural and not controlled by the drug companies, so you many need to find an Armour-friendly doctor to get a prescription. Luckily, I was started on it from the beginning. Best of "luck".
    Peace,
    Julie
  4. JohnS

    JohnS New Member

    Glad to hear you have made some progress.

    I have often suspected my problems may have some hormonal connection paticularly as my symptoms are significantly worse in the mornings. I did have the usual thyroid tests , all normal.

    I would be interested to hear more about your symptoms. Do you know if your immune system was affected ?

    John
    [This Message was Edited on 05/31/2003]
  5. Princessraye

    Princessraye New Member

    I have an appointment with my GP in a couple weeks and will ask him about Armour Thyroid.
  6. klutzo

    klutzo New Member

    I just posted recently about what a miracle Armour Thyroid and Progesterone drops have been for me. I have oodles of energy and am about 90% free of FMS pain now.
    I have pushed people here to read about Hypoadrenalism to the point where I am sure everyone is sick of me, so I am glad you have taken over. I feel certain this is a key to the puzzle.
    Klutzo
  7. mystijul

    mystijul New Member

    Interesting theory. But I am not sure how safe it is to block a hormone you are supposed to have. I know though that Progesterone played a role in my illness. Mine was real low, so they put me on Prometrium an oral progesterone and it brought the FMS back x 10. The worst flare I remember and it lasted until a week after I stopped the Prometrium. Now on the cream I am doing OK, but I get cramps again. On just Armour Thyroid, I had no pain whatsoever with my period for the first time since junior high. But every month I took progesterone, the cramps came back, though they aren't as bad on the cream.

    My concern with blocking the hormone is low progesterone also causes weight gain, bloating, PMS, infertility or miscarriages and cognitive problems. Also, it seems you would become Estrogen dominant, if you blocked. Just my ponderings, I can see the connections though.
    Peace,
    Julie
  8. Princessraye

    Princessraye New Member

    We are not sick of you :)
  9. AmyKaiser

    AmyKaiser New Member

    Hi Myst,
    yes i have read many books on the fact that Thyroid is so hard to detect..
    and even having gone to an endocronologist, she just simply said by looking at the T7 panel i am fine..she felt my throat and said it was fine..
    i said i suspect low adrenals, and she sent me for an ACTH test..where they shoot u with cortisol..she then said THAT was fine ( tho the nurse gave me a donut after the first injection cause my blood sugar dropped so drastically i almost passed out )..mebbe that suggests i do have enough in reserve..
    HOWEVER, i have horrible allergies..hypoglycemia i cant control well etc etc...
    funny part is my basal temp is 96.8-97.4

    whats the free T level?
    free t 3 or free t 4...mine were both ok i believe..
    as well as my thyroid antibodies.. as well as progesterone and vasporin etc
    Amy
    [This Message was Edited on 06/01/2003]
  10. mystijul

    mystijul New Member

    Yes, Free levels are FRee T3 & free T4, these are uusally not tested for. I believe they are the levels free for use. If you do have a problem with your thyroid, what your doctor considers "in range" may not be ideal for your body. The Physician's Desk Reference even says if the patient presents with the symtoms, even though the tests are normal, to treat with trial of medicine, though many doctors ignore this or may not even know it. Sad, isn't it?

    If you read the Shames book, Thyroid Power, http://www.thyroidpower.com, they tell you to test your basal body temp every morning and if it is typically under 98.6, then you probably do have a thyroid problem. You can read their self-test at their site too. Mine used to stay at 97.6, my husbands at 96 or 97.3, (he just got on Armour about a month ago- we both had enlarged thyroids). Mine was higher last time I went to the doctor, 98.3, but I haven't taken it in awhile.

    If you suspect your adrenal glands may play a part you can have your doctor order a 24 hr saliva test from Great Smokies Laboratories, rather than the ACTH test. This shows cortisol as well as DHEA levels at 4 times during the day. They showed my cortisol to crash in the afternoon and any sugar/carbs I ate in the morning would crash mine the rest of the day. It mentioned something about glycemic index, so I think maybe this test shows hypoglycemia too??? This can be treated with a low dose of hydrocortisone called Cortef, or herbally, and certainly can be helped by diet- I am on Atkins, to see if it helps with that and an herbal supplement called ADHS. I may get on Cortef at the end of the month if this doesn't work.

    If your adrenal gland is messed up, chances are your thyroid is too, likewise if your progesterone is messed up, your thyroid probably is too. They all work together.

    Peace,
    Julie
  11. Princessraye

    Princessraye New Member

    If my GP won't check this what kind of Dr. would I go to?
    A gynecologist, endocrinologist ? Who ????
    Thanks...............
  12. mystijul

    mystijul New Member

    From the thyroid list I am on, I have seen people have even more trouble with endos not believing in subclinical hypothyroidism treatment than regular doctors.

    I wish it was the case that you had a forward-thinking doctor, who trusts your natural instincts and his/hers, as was the case with my husband and I.

    My advice is to find a doctor who treats despite the test. You can find a list of them here: http://www.geocities.com/thyroide/docs-USA.html. My doctor is Kimberly Stearns in WV.
    Peace,
    Julie
  13. klutzo

    klutzo New Member

    Princess - you usually need a holistic M. D. or D. O. to get tests like the ASI saliva test run.
    However, there is a simple test any doctor can do to see if you are hypoadrenal. In fact, you can do it yourself, if you have a blood pressure machine at home and know how to use it.
    Get the machine set up, cuff on your arm, etc. Lay down and relax for five minutes, then take your pressure still laying down. Immediately stand up and take your pressure again standing. If someone else is doing this for you, have them pull you up, so you come up fast, and then take the reading right away.
    In a person with normal adrenals, the BP readings should be the same both laying and standing. In hypoadrenalism the standing pressure is lower than the laying down one. The greater the difference in the top number (systolic), the greater the adrenal dysfunction. For example, my systolic pressure is 22 points lower when I stand up.
    However, even if you get your regular doc to take the two BP readings, and even if they are different, you will probably not be able to get a conventional doctor to treat you.
    If there are no holistic docs near you (I have to go to another city, 1 1/2 hrs. away to see one), you can be treated over the Internet by Dr. Gerald Poesnecker. Go to chronicfatigue and a dot org to find out more about this. It is a lot harder to be treated this way, but better than nothing. He insists on the saliva testing before he will treat you though, and while insurance will pay if it is coded correctly, I am not sure how that works over the net. You can write to him at the website and ask.
    The thing that bothers me about him is that I don't see anything about treating the thyroid or the sex hormones like progesterone at his site. Also when I wrote and asked him how he protected his glandulars from contamination, he got very defensive and refused to answer.
    If you have a doc who will listen at all, you might print out some of the info at chronicfatigue and a dot org and also print out the treatment list (mentioned in the post above) at drrind and a dot com. There is a Metabolic Scorecard available at drrind and a dot com which can help you to determine if you have adrenal, thyroid or both as problems, and you could print this and take it to your doc and try to get him/her to look at it and consider a trial of Armour Thyroid and maybe progesterone creme,if he won't prescribe the drops. If he won't prescribe Cortef, and you don't have high Blood Pressure, you can get some licorice tea and use that to help your adrenals, along with Vitamin B5, and the other suggestions on the list at Dr. Rind's site. Except for the thyroid part, it is possbible to treat yourself for this problem, though it is not as advisable as getting professional help. After all, we are talking bout hormones here.
    Klutzo
    Klutzo
  14. AmyKaiser

    AmyKaiser New Member

    i was under the impression this was the big one for adrenals?
    well a B complex is real important too
  15. klutzo

    klutzo New Member

    John - low testosterone levels are a proven contributing factor in FMS in many men, and there is a specific protocol for it, but many docs do not know about it. I am glad you found out and are getting help.

    Amy - It is vitamin B5, aka pantothenic acid, that helps the adrenals. You are exactly right that all the B vitramins are needed for good adrenal function.

    I just went to Dr. Roby's site....thanks for the referral! His hormonal approach to CFS/FMS is exactly what I belive in, but one of the specifics of the approach is exactly opposite my holistic doctor. Dr. Roby blocks progesterone and prescribes estrogen, as someone mentioned above, while my doctor prescribes progesterone and never gives estrogen.
    So, I wrote to Dr. Roby and asked him to explain this so I can take it to my doctor. I explained all the bad things estrogen did to me when I used to be on it. My doc thinks estrogen dominance is a big part of the problem of FMS. I will share his reply with you all, if/when I get it.
    Klutzo

    [This Message was Edited on 06/01/2003]
  16. AmyKaiser

    AmyKaiser New Member

    if your testosterone levels were low, have u checked your DHEA and DHEAS then...
    might be a good idea to do that
  17. Princessraye

    Princessraye New Member

    Thanks for the infor. My mom said she heard most compounding pharmacies will due that saliva test for me.
    I will check it out.
  18. AmyKaiser

    AmyKaiser New Member

    i have been wanting the saliva test too..
    whats a compound pharmacy..
    its sooo difficult to get tests done, i have to fight tooth and nail to do it..
    i have several docs for this reason but noone will do this as of yet..
    one doc just wants to do a morning urine and thats not all that affective from what i have read...
    Dr Conely says 24 urine tests pick up things others dont tho...

    another issue is really how to help the adrenals anyways..i also cant get a doctor to perscribe Cortef..that really seems to be the only way to go

    Amy
  19. AmyKaiser

    AmyKaiser New Member

    glad i could possibly be of some help
  20. klutzo

    klutzo New Member

    The 24 hour urine test is collected all into one big jug, so you will have no idea how your cortisol levels fluctuate at different times of the day. I had this done and it was normal. I also had the 8 am blood test done and it was normal, but my last saliva ASI test was very abnormal,a nd showed life-threatening adrenal insufficiency! I beleive you can order an ASI test kit at Dr. Poesnecker's website and then send it to the lab with your check. It needs to be sent so it will arrive within 2 days, so you will need to go to the postoffice. I sent mine guaranteed overnight to be sure.
    A compounding pharmacy is one that makes up your specific prescriptions from scratch just the way your doctor orders them, instead of just grabbing a bottle of pills off a shelf and putting some in a bottle for you. This allows your treatment to be customized, and you can get the much smaller doses that many of us need to take. I believe the CVS chain of pharmacies provide this service a well as regular pharmacy services. I get mine mailed to me from Women's International Pharmacy in Madison, Wisconsin.
    If you cannot get anyone to prescribe Cortef, you may use glandular extracts, depending upon what stage of adrenal insufficiency you are in. If you have been dx'd with CFS, you can probably take glandulars, which are available over the counter in health stores or online. If you are dx'd with Fibro, you probably are in stage 2 or 3 of adrenal failure, and should not use glandulars as they raise both cortisol and adrenalin. Most Fibro patients are putting out too much adrenalin already. The ASI test pinpoints exactly what stage of adrenal hypofunction you are in. Providing you can take glandulars, you can get everything you need for this treatment at the website of Dr. Bruce Rind.
    Klutzo
    [This Message was Edited on 06/01/2003]