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My CFS/ME was GHD

Discussion in 'General Treatment' started by awkwardlymodern, Apr 10, 2015.

  1. awkwardlymodern

    awkwardlymodern Forcing the past to blend with the future

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    So after a lot of testing and a month of replacement-dose growth hormone therapy, it turns out that a severe growth hormone deficiency, not CFS or ME, was causing my symptoms. I'm back to a normal energy level after years of exhaustion.

    I presume now that the strep infection somehow caused damage to my pituitary, as it did to my thyroid, through some sort of polyglandular autoimmune syndrome. I realize this makes my experience less relevant to most members here now, but I just want to put it out there as another possible alternate diagnosis to investigate, since the symptoms are so similar to CFS/ME and it is treatable--it would be a shame for anyone else to have to go through this.
     
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  2. adreno

    adreno PR activist

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    Congratulations on your improved health!

    It's always good when someone reports back, instead of simply disappearing into oblivion :)

    It might very well be relevant to a few others here.
     
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  3. Sidereal

    Sidereal Senior Member

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    Always great to see people getting off this island!
     
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  4. halcyon

    halcyon Senior Member

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    Very nice to hear this. Was an IGF-1 test diagnostic in your case, or was the diagnosis just made clinically and confirmed with HRT?
     
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  5. sarah darwins

    sarah darwins I told you I was ill

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    Fantastic! Congratulations.

    It's incredibly relevant to people here, isn't it? I've been following this thread - "Physical or Mental: Why it Matters" and thinking that one of the reasons why the whole psychiatrizing (sorry) of ME/CFS matters so much is that it discourages doctors from doing the sort of tests which have given you your life back. How many others? you wonder.
     
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  6. Sidereal

    Sidereal Senior Member

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    I bet there are a ton of people with pituitary disorders amongst the ranks of CFS patients. I'd be curious to know how @awkwardlymodern got diagnosed. In this country endocrinologists laugh in your face if you suggest testing for such things.
     
  7. awkwardlymodern

    awkwardlymodern Forcing the past to blend with the future

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    Thanks everyone! If it weren't for the support and ideas I got here, I may have given up and never got the testing...

    @Sidereal, @halcyon It was just a suspicion based on my research, I thought there had to be some connection between my most prominent symptoms--social withdrawal, cognitive impairment, and connective tissue breakdown (extremely rapid aging).

    The two symptoms' severity seemed to correlate, and that didn't make sense: genetic connective tissue disorders like EDS don't wax and wane, and solely brain-based cognitive impairment shouldn't be accompanied by catabolic tissue changes.

    The most obvious link I could think of was growth hormone, which would connect the two: without growth hormone, your body can't do the necessary repairs to maintain either connective tissue or neural function. I went to an integrative doctor and he did an IGF test which turned out abnormally low, he consulted with an endocrinologist he knew, and we did a complete GH workup. Voila--the culprit--almost no GH production.

    I agree @Sidereal about the pituitary disorders and @sarah darwins, yes, if I'd believed it was "all in my head" I would have been hopeless.
     
  8. MCRobbie

    MCRobbie Senior Member

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    Congratulations @awkwardlymodern. Feels like a miracle anytime someone breaks free. Good look on the outside!
    Gives us hope we can get there too one day.
     
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  9. A.B.

    A.B. Senior Member

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    Thank you for informing us and congratulations.

    Did you have a tendency for reactive hypoglycemia? I have read that this is a symptom of adult GH deficiency but many sources don't mention it.

    I'm also curious about the waxing and waning pattern. Can you describe it?
     
  10. PWR (Peace without Rest)

    PWR (Peace without Rest)

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    @awkwardlymodern,

    I'm also glad you've found help. I'm wondering if anyone else on PR has found GHD (for me, a significant part of my ME/CFS, not my entire illness) a major player??? I saw a ME/CFS Dr. who followed Dr. Paul Cheney's program with Exercise/Bicycle testing, measuring GH before and after, and mine dropped after the exercise, as was expected. I went on the pediatric dose of 0.2 mg @ 3x/week for 9 years. It was definitely needed, but obviously not my entire problem.

    Before seeing the above Dr., I saw an endocrinologist in L.A. who said he found many benign pituitary in his patients, causing GHD, though my MRI was negative for that.

    So, for those who did the Cheney protocol for GH, did it help and how much? I'm curious. One reason why mine was so bad was a horseback riding accident when I was 10 and the horse stepped on my head, setting me free. My husband's need (re: ME/CFS) for the GH shots was only 6 months, though he finds the metabolic pathways feeding into it central to his continued progress. That is, the liver's ability to promote GH production and the need for muscle rebuilding and growth.
     
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  11. nandixon

    nandixon Senior Member

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    I'm really happy for you @awkwardlymodern! :)

    I'd like to know what this problem looks like in the real world, so would you mind putting some numbers to it and giving your laboratory values for the IGF test and for the tests in the complete GH workup? Thanks and congratulations again!
     
  12. Hip

    Hip Senior Member

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    Congratulations @awkwardlymodern on your intuitions and detective work!

    May I ask a few questions:

    Just to get better idea of the subtle differences between HGH deficiency and ME/CFS, can you detail a bit more about the connective tissue breakdown and extremely rapid aging you mention. Did this manifest as more skin wrinkling, and perhaps lax tendons and ligaments, making your joints looser?

    If it was skin wrinkling, did it look anything like this picture of the top of my hand? These are the skin wrinkles I rapidly developed after I caught a viral infection.

    I am also interested in how your connective tissue symptoms and cognitive/mental symptoms waxed and waned. Was there a cycle in which the symptoms worsened over a few months, and then improved again over the next months? Would that perhaps indicate a slow variation in HGH output?

    By the way, in this post I list a comprehensive set of symptoms that occur in human growth hormone deficiency. Did you manifest many of those symptoms as well?

    Once you started the HGH injections, how long did it take before you started to feel the first improvements in mental state? Are we talking a matter of a few days? I know you said you were fully recovered after a month of HGH, but I am interested in how quickly the first feelings of improvement kicked in when you began the HGH injections.

    Interesting also that you mentioned in another thread that your tried the HGH secretagogue GHRP-6 for two months, but got no benefits:
    This suggests that your pituitary gland is no longer secreting HGH when stimulated, and perhaps in such cases, injectable secretagogues like GHRP-6 cannot be used as a simple test for HG deficiency, because the pituitary will not respond to them. So the only thing that will work is actual HGH injections.
     
    Last edited: Apr 10, 2015
  13. Sidereal

    Sidereal Senior Member

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    @awkwardlymodern, did you have postexertional malaise (PEM) before GH replacement?
     
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  14. Gingergrrl

    Gingergrrl Senior Member

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    @awkwardlymodern I am so happy for you and thank you for posting this. I remember your first post and blog and many of the similarities that we shared (re: chronic tonsillitis, strep, cardiac issues, etc.)

    I am intrigued by your finding b/c my Endo (and a previous doctor) found that I am very low in growth hormone and I was tested three times since 2013. However it was just a regular blood test (I do not recall the name) and my Endo said I would need a much longer formal test in order to confirm. It involved many injections and blood draws so I declined it although he mentions it every time I see him (which is to monitor my Hashimoto's thyroid issues.)

    He said that without the second confirmatory test and a brain MRI, insurance would never cover growth hormone. He also said that there was no guarantee that growth hormone would help my ME/CFS (he does not use that term but he believes that I have CFS and has seen me progressively get worse since 2013 when I could still walk several miles per day to now that I cannot walk more than a few feet and use a wheelchair.)

    He also told me that growth hormone can cause cancer but I am not sure if this is true in all cases (like maybe if you are really deficient, it is just correcting something that is needed.)

    I have some questions and am sorry if you already said all of this!:

    1) Did you have the extensive testing and MRI?
    2) Does your insurance cover the shots?
    3) Did your doctor mention that it can cause cancer?
     
  15. Beyond

    Beyond Juice Me Up, Scotty!!!

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    Congratulations on feeling better! And thank you for coming back and sharing, that says a lot about you. Like almost everyone else, I have my own battery of questions heheh...

    Are you just taking the hormone/s? In that case, nothing has been done with the autoimmunity? Btw that is just an hypothesis or have you confirmed the autoimmune process?

    My IGF-1 is one of the few hormones that was very high on tests.
     
    Last edited: Apr 11, 2015
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  16. justy

    justy Donate Advocate Demonstrate

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    Hi, so glad you found the cause and got better. I am concerned about my pituitary function after I had two quite nasty post partum haemorrhages many years ago. Dr Myhill thinks I may have a degree of Sheehans syndrome, but cant get anyone interested in this. The endo (NHS) only did an ACTH stim test and that was all.

    The symtpoms of HGH deficiency match mine, but I don't think this has ever been tested in me. I have had accelerated ageing in the past few years and cognitive decline. Perhaps i'll mention it to my M.E doctor when I see him in June and see what he says about this whole thing. Ive totally given up on any help from the NHS.
     
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  17. awkwardlymodern

    awkwardlymodern Forcing the past to blend with the future

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    Looks like I've got a lot of questions to answer :eek: lol, I'm happy to provide any information that could help anyone here :)

    Starting from the last and going back:

    @Beyond: Yes to both of your questions. I am only taking the hormones (GH and thyroid), and the autoimmunity is just a hypothesis based on

    1) I have Hashimoto's, and
    2) the Hashi's and GHD symptoms both started with a chronic peritonsillar (strep) abscess that was not drained for nine months, and coincided with low-grade fevers etc.

    ------------

    @Gingergrrl: I did have all of the testing you mentioned and I was diagnosed with GHD based on insufficient GH response to the ITT, low age-adjusted IGF-1 and symptoms/signs consistent with GHD.

    The one thing I'm confused about is the MRI--my MRI came back normal, but my insurance doesn't require an abnormal MRI, I was fortunately told the abnormal ITT with low IGF-1 and consistent symptoms were sufficient--maybe you need a different insurance or endo?

    The long formal test you're talking about is probably the GH stim test. There are a few types of this test and I had the insulin tolerance test (ITT) with several blood draws where they test for GH levels. Insulin stimulates a normal pituitary to release GH, so if your GH release is insufficient GHD can be diagnosed. It is not fun but I survived it.

    As to cancer, I did the research on that myself (I'd never use a treatment without thoroughly investigating it). I'm lucky to have found a doctor who respects the research I've done. High IGF-1 does mean high cancer risk, but low IGF-1 increases your risk of cardiovascular disease, so your optimal range is mid-range, which is what I'm shooting for.

    Of course you also have to consider your individual background--for example, drugs that lower IGF-1 are being investigated to treat cancer, but of course you wouldn't want to give these meds to someone with heart failure (and no cancer)!

    Interestingly there is almost no cancer in my family and tons of heart issues...

    -----------

    @Sidereal: interesting you mentioned PEM, this was the one area I never felt I matched with classic ME. I had disabling post-exertional fatigue and brain fog, and I had malaise as well, but the malaise part seemed more constant and didn't fluctuate with exertion like the fatigue and brain fog did.

    ------------

    @Hip: exactly, you guessed right on my pituitary. I hadn't done the GH stim test when I posted that so I didn't know that this was the problem. I still don't know why the GHRP-6 gave me a fever, though.

    I felt a cognitive and mood improvement almost immediately, the day after my first injection. The physical improvements were more gradual and as far as I can tell my veins, skin, joints and hair are still improving. Just recently I've been able to tolerate walking occasionally without my compression stockings (my POTS was from weakened veins).

    I haven't looked at your list yet, but my symptoms/signs of low GH as I understand included cognitive impairment, fatigue, social withdrawal, anhedonia, muscle weakness/atrophy, high LDL cholesterol, and prematurely aging connective tissue including veins, skin, joints; and very slow-growing, thinning hair.
    -------------

    @nandixon: My results were

    IGF-1 102 ng/mL (age 33)
    IGFBP3 2542 ng/mL

    (Ratio of IGF-1/IGFBP3 is low, meaning very little free IGF-1 so this makes IGF-1 effectively lower. This is also considered a protective factor against cancer: http://imunokurzy.cz/prilohy/iad12/PO/O V/Kucera_Normal values of IGF1 and IGFBP3 final.pdf)

    Peak GH response stim test: 2.6 ng/mL

    ---------------

    @A.B. and @Hip: The waxing and waning of cognitive dysfunction and connective tissue symptoms:

    -After a trigger like infection, surgery etc I would have increased fatigue and brain fog along with thinning skin (my veins would become visible within a few weeks), venous insufficiency and yes joint laxity.

    Over a period of a few months the connective tissue would strengthen along with my energy level and mental clarity, and most strikingly my joints would become less flexible and veins no longer visible. I didn't have wrinkles like the pic you showed me; my first sign was weird bulging veins in my hands and feet at age 25. I was told this was from weakened veins AND thinning skin which both happened at the same time.

    The recoveries got weaker and weaker over the years but the GH replacement is starting to thicken my skin and strengthen my veins again already.

    I am guessing now as you suggested that this was from a gradual loss of GH production which worsened after infections and physical trauma, another clue that it may be autoimmune.

    --------------


    Hope this is helpful!
     
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  18. awkwardlymodern

    awkwardlymodern Forcing the past to blend with the future

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    @Hip heh, just checked your list.

    Um, thanks for reminding me of the rest of my symptoms. It's a long list, so I forgot to include the sleep disturbances, problems with temperature regulation, high BP, thermal regulation issues, and low sex drive.

    Pretty much the only symptom on your list I DIDN'T have is the weight gain, I've always been underweight (with a high fat percentage--"skinny fat?") But then I also have Hashimoto's and never gained weight. I presume it was a combination of appetite loss and damage to my gut/malabsorption from celiac. Interestingly I've gained weight since starting the GH.
     
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  19. Ema

    Ema Senior Member

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    If one has high ACTH, this can make IGF-1 look artificially high even in the face of GH deficiency because they share a common precursor pathway.

    The stim tests are really what is needed to diagnose a GH deficiency. IGF-1 is not very specific or reliable in the vast majority of cases.
     
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  20. Ema

    Ema Senior Member

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    @Gingergrrl: I did have all of the testing you mentioned and I was diagnosed with GHD based on insufficient GH response to the ITT, low age-adjusted IGF-1 and symptoms/signs consistent with GHD.

    The one thing I'm confused about is the MRI--my MRI came back normal, but my insurance doesn't require an abnormal MRI, I was fortunately told the abnormal ITT with low IGF-1 and consistent symptoms were sufficient--maybe you need a different insurance or endo?

    The long formal test you're talking about is probably the GH stim test. There are a few types of this test and I had the insulin tolerance test (ITT) with several blood draws where they test for GH levels. Insulin stimulates a normal pituitary to release GH, so if your GH release is insufficient GHD can be diagnosed. It is not fun but I survived it.

    [/QUOTE]

    I would make 100% certain that you have strong adrenal function before undergoing an ITT. It can be a very dangerous test if you are at risk for adrenal insufficiency.

    The arginine stim test is much safer but unfortunately many insurance plans won't accept it over the ITT. I guess if the ITT kills you, then they get out of paying for GH too. o_O
     
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