human growth hormone deficiency and CFIDS (Nell?)

Discussion in 'Fibromyalgia Main Forum' started by sb439, Oct 10, 2002.

  1. sb439

    sb439 New Member

    I just got my test results for human growth hormone (24 hour urine), my expected age/gender range is 452-2265, and I have only 14. Looking at some things on the web, this seems to be a sign that my CFIDS is perhaps worse than I thought. Has anyone here tested having hgh deficiency? And is treated for it? What sort of treatment do you get?
    Susanne
  2. sb439

    sb439 New Member

    I just got my test results for human growth hormone (24 hour urine), my expected age/gender range is 452-2265, and I have only 14. Looking at some things on the web, this seems to be a sign that my CFIDS is perhaps worse than I thought. Has anyone here tested having hgh deficiency? And is treated for it? What sort of treatment do you get?
    Susanne
  3. lucky

    lucky New Member

    Could you please explain to me what type of testing you just had done for human growth hormone deficiency?
    I also had some testing done by an endocrinologist for growth hormone defiency but the testing did not show any abnormalities. This confirms to me again that many symptoms of CFS/FM are probably caused by viruses. Kind regards, Lucky
  4. klutzo

    klutzo New Member

    Please do a search of previous posts by Lakediver. She has been getting the hGH injections for a awhile now and it has given her back her life. Also,Paul Mark has had them but has had trouble with them, and I believe Dara might be starting them, as her test result was also low. I just had mine tested (IGF-1,another way of testing it) and mine was low normal, but still normal. A recent study showed 30% of FMS patients have low hGH. I don't know about CFS. It is treated bu uou giving yourself injections and it is VERY expenisve unless you can get in a patient assistance program. Both lakediver and Paul Mark can tell you about the programs they are involved with. If you don't find the info you seek in the search of their previous posts, you can always post a new message to their attention and keep bumping until you get replies. Lakediver doesn't come here much anymore...she is out living her life...but hopefully she will see the post. She is in the Eli Lily Patient Assistance Program/Humatrope Study. I hope you can get the same results as she has from treatment. Best wishes,
    Klutzo
  5. sb439

    sb439 New Member

    Lucky - the test was a 24 hour urine test, done by AAL lab in California, costs $100 approx.
    Slowgirl - thanks for letting me know about Nell.
    Klutzo - this is most helpful information, thanks ever so much. I have a telephone consultation with my doctor on Wednesday, and no doubt after that I'll have more questions to lakediver and others with experience in hGH treatment. (the idea of giving myself injections makes me feel sick, but I know lots of people do this, so I'm sure so could I ... )
    Thanks again.
    Susanne
  6. sb439

    sb439 New Member

    I'll tell my doctor. This gives me hope - if the test is worthless, than perhaps the fact that it shows me terribly deficient in hGH may be no indication that I'm deficient in it at all? That would be great of course.

    But where could I have the test done that you suggest? Which doctors would support my having it done? (I live in New Haven, CT, my doctor is in the UK, and I'm too ill to travel there.) Help would be much appreciated.

    Susanne
  7. Mikie

    Mikie Moderator

    HGH, like insulin and blood sugar levels, fluctuate due to eating/fasting patterns. HGH is manufactured during sleep and during exercise as well.

    Many of the lab tests routinely done by docs are next to useless. Just another case of most docs' not understanding how to treat our illnesses.

    Love, Mikie
  8. klutzo

    klutzo New Member

    Lets' play charades! Without giving info that would get you banned, can you give me a clue that will help me figure out which secretagogue you took?
    I also researched and picked one I thought was best (one without the herbal stimulants so often put in them to mimic an increase in hGH, while they are really just increasing energy artificially), I took it for 2 months at maximum dose with no results. Some days I thought it was working, some days not. In otherwords,the usual ups and downs of FMS.
    Also did you have an hGH stim test or an IGF-1 level one before taking it, and if so what was your level? I'm glad it is helping you so much.
    Thanks for any info,
    Klutzo
  9. SleepyWillow25

    SleepyWillow25 New Member

    This is interesting to me as I have literally just started to take a pill for this which has helped a few very ill cfs patients. A patient of my docs was completely bed bound and now her pain is cut into half and is able to walk a few houses. Dr. Goldstein had a patient apprently that improved so much that she was going for 5 hrs without fatigue and has returned back to work. Of course everyone is different and it may not even help me. I started the treatment last night and I am on my 4th pill now.

    I am keeping a journal on how I go before and during this treatment.

    Love Belle

  10. sb439

    sb439 New Member

    Mikie - I know that HGH fluctuates during day and night etc. That's why I thought a 24 hour urine test on a 'normal' day (as was specified in the test instructions) would give some useful results? (I'm too ill to exercise, so that wouldn't come in anyhow.)

    Lois - like klutzo, I'd also love to know which amino acid secretagogues you took, is there a way you could give a hint?

    Belle - is there anyway you could let us know what sort of pill you're taking?

    Thanks again, Susanne
  11. lilwren

    lilwren New Member

    I heard a lecture by Dr. Cheney and he said growth hormone could increase the duplication of viruses, bacteria and cancer. So shouldn't those of us who have viruses and bacterial problems be careful using HGH? Maybe not use it until we're sure we've got the 'bad guys' under control? Any thoughts?

    love,
    Sharon L
  12. PaulMark

    PaulMark New Member

    sb 439 what's that mean, i'm paul mark in ky i've tried both mestinon drug for bodies own gh and the injections, i'll help you

    paulstory@iolky.com


  13. PaulMark

    PaulMark New Member

    LOIS and Slepwillow: I like Klutzo would like to know the name of the secotaagroe can't spell it that you one of you tried, and also the PILL?? is it mestinon that dr. bennet used and i tried by my dr. paul cheney?? if not

    please let us know , about the sec. and the pill you are describing, i'll share my exp. with both hgh shots and the mestinon, many could probably take the drug it had benefits but i couldn't take the gi related side effects in my weakened condition and gut ecology is so shot

    also the STIM test is not the one cheney uses, the one he uses is more acccurate, i can tell you more,

    please e mail me

    paulstory@iolky.com

    I'll share whatever i can to help, god bless PM
  14. Mikie

    Mikie Moderator

    I really think it's a matter of degree. If one is in danger from having a very low level of hgh in his or her system, it makes sense to take the injections. However, there is a danger of feeding cancer cells (I hadn't heard about viruses, but it makes sense) with the injections and that is why many docs don't like them. The human body gets cancer on average 200 times a day. A normal immune system can handle that, but we do not have normal immune systems. The advantage to the injections is that they are created in a lab and do not use animal material.

    I use a spray stimulant which I bought at the health food store. It does help and I can feel a difference. It is made from bovine organs and I am careful to use only products which are not made in the UK, although that threat is probably no longer valid. I use one which does not contain ginko or other stimulants as some do. The stimulants are safe because they do not feed cancer. They will only cause your body to make hgh if there is a deficiency.

    It appears that the reason hgh is so helpful is because it is used by the body to create IGF, insulin-like growth factor. Docs are now looking at just supplementing with the IGF itself.

    Love, Mikie
  15. lucky

    lucky New Member

    I just learned that Somatotropin is used to stimulate growth hormones. Never heard of it, and my question is, do you have any idea what this medication is made of and if it is new on the market? Kind regards, Lucky
  16. PaulMark

    PaulMark New Member

    lois can you post how to get teh ONE at vit. shoppe if not will you e mail me and i'll get it to klutzo we are both interessted i know she's tried other brands as i have and i've had problems with hgh inject and the drug mestinon

    paul mark
    paulstory@iolky.com

    thank you
  17. Mikie

    Mikie Moderator

    I've never heard of this either. Have you tried doing any searching on the net?

    I believe that research into Hgh and Igf will bring some benefits our way.

    Love, Mikie
  18. sb439

    sb439 New Member

    he thinks: if the 24hour urine test shows a large deficiency, then there is some deficiency of ghg. further that for people over 40 (like me) the secretagogues tend not to work too well. further that it's true one must get viral infections (very common in CFS) under control first, and the immunesystem be strengthened some. further that one must get hypoadrenalism (very common in CFS) under control first, to prevent patients getting worse with hgh. Also, if there's a large load of metal toxins (e.g. mercury)in the organs, that it might be wise that these be decreased first. further that if hgh injections are considered for CFS sufferers (after all these other things have been dealt with)they have to be *extremely low* to prevent set backs, i.e. 0.01 mgr to start with, and a very slow build up to 0.1 mgr max, *if* tolerated. All this info was naturally taylored to my own case, and may not hold for others, still thought it might be useful. (I forgot to ask what the injections might cost ...)
    Susanne
  19. lucky

    lucky New Member

    I found the name of this med on the Human Growth Foundation web, and since I had an appointment with an endo, I was trying to get as much info as I could before my visit.
    And, now, I get a lot more input from some of the members, which is great.
    The Foundation is mailing me quite a few articles on HGH.
    And....I wish you luck with your beautification program, sounds great, and.....you will feel like a new person in a little while. Take care Lucky
  20. Mikie

    Mikie Moderator

    Susanne, thanks for this important info.

    Lucky, thank you too. Please share what you learn when you get your packet. Also, thanks for the good wishes.

    BTW, I am 58 and do notice a difference from the spray, but I know we are all different. I'm going to look into the products here for IGF supplements. It may well be that we can bypass the hgh and go straight to IGF for results.

    Love, Mikie