Looks like I've got a lot of questions to answer
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.
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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.
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...
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@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.
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@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.
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@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
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@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.
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Hope this is helpful!
