My CFS/ME was GHD

[heapsreal]

anyone know what growth hormone costs in Australia?

I looked into it a few years ago and it was around $500 for 1unit of GH a day for the a month. Never tried it but would be interesting to see if it helps.

 

[Hip]

On body building websites and those which sell anabolic steroids (see this list) you find HGH for sale for around $4 per IU.

 

[Chriswolf]

To the OP, what were some of the worst symptoms that you experienced?

I've wondered about my GH levels and the idea has been tossed around by a few people now that I may have some kind of damage to either my hypothalamus or pituitary based on some of my issues.

One of the most prominent issues I have that may relate to hormone deficiency is muscle weakness and extremely poor recovery from exercise or strenuous activity.

More specifically there are times where my muscles feel like they're failing and straining to perform very basic functions such as hold me together/upright.

If I push myself too hard my muscles begin to tighten up and hurt as if they've been put through more than they can adequately recover from.

What's more, I seem to lose muscle tone much more quickly than the average person, as well as it is much more difficult to acquire through exercise.

Does any of that seem familiar?

 

[Snow Leopard]

Does any of that seem familiar?

Muscle weakness due to fatigue is familiar, but loss/lack of retention of muscle tone is not.

I'm not a doctor, but it may well be worth getting GH tested, along with tests for other disorders that cause muscle loss.

 

[Chriswolf]

I'm definitely going to, something is amiss and I think I need a few endocrine-related things tested to rule out any hormonal issues.

 

[voner]

I trialed HGH for 6 months. I had borderline low igf-1. it was no help. I have PEM. I was following fibromyalgia research at the time. Dr. Bennett up at the University of Oregon was conducting a trial of HGH on fibromyalgia patients and was seeing some success and my doctor was open to trying it. The trials eventually did not pan out.

One thing I did is that I searched high and low for pricing on HGH – since insurance was not going to pay for it – and found the best price and then went over to my local national chain pharmacy and had them price match it.

for me, I experienced absolutely no change in any of my symptoms during the trial period.

I tried the endocrinologist route, but as my primary care doctor said – endocrinologists really tend to not be able to think out of the box. unfortunately, that was my experience also. thankfully, my primary care doctor was willing to give it a try. we had a good relationship.

I never regretted the time and money I spent on exploring this Avenue, though.

 

[heapsreal]

If ones after muscle rention or build lost muscle than testosterone and other anabolics are actually more efficient than gh.

An anabolic called deca durabolin is very good at reversing muscle wasting and building muscle in general . Also good for fixing many injuries and has qualities that can help improve immune function like neutropenia etc. Also improve anemia.

Big problem is the whole scare tactic on using anabolics and the bad name bodybuilders have given these drugs. There is plenty of positive research with deca durabolin used in hiv.

So its really hard to get prescribed but worth it if u can.

For some reason transdermal testosterone isnt that effect other than hrt to a mid level

 

[Chriswolf]

I know that myasthenia gravis is not directly heritable, however I do have a history of autoimmune illness on my mother's side in which my grandfather did have it. I know that hypotonia is an issue with myasthenia gravis so who knows, all I know is that I for certain have autoimmune markers. However I am more suspicious of certain hormone levels and need to have them tested.

I think that I would probably want to take some PCT treatments as opposed to disrupting my HPT axis totally if my endocrine system is found to be performing badly. HCG would be more attractive to me as a potential solution than would straight axis-busting hormones, I'll just have to see how things go when I manage to get some testing done.

 

[heapsreal]

I know that myasthenia gravis is not directly heritable, however I do have a history of autoimmune illness on my mother's side in which my grandfather did have it. I know that hypotonia is an issue with myasthenia gravis so who knows, all I know is that I for certain have autoimmune markers. However I am more suspicious of certain hormone levels and need to have them tested.

I think that I would probably want to take some PCT treatments as opposed to disrupting my HPT axis totally if my endocrine system is found to be performing badly. HCG would be more attractive to me as a potential solution than would straight axis-busting hormones, I'll just have to see how things go when I manage to get some testing done.

I have read that hcg can increase e2. So might be better with low dose clomid like 12.5mg 3 times a week or nolvadex 10mg a day. Seems individual though.

 

[Chriswolf]

It can increase e2? Intredasting.

Well, at least I'd have a nice luxurious head of hair unless all of that extra test aromatised into estrogen or turned into DHT via 5-AR.

 

[heapsreal]

It can increase e2? Intredasting.

Well, at least I'd have a nice luxurious head of hair unless all of that extra test aromatised into estrogen or turned into DHT via 5-AR.

Get a set of boobs to match. Guys usually take nolvadex or arimidex with hcg to keep e2 down. Not sure if one is preferred over the other .

 

[Chriswolf]

I wasn't aware that prostaglandin e2 had estrogenic effects, I'll keep that in mind.

 

[heapsreal]

I wasn't aware that prostaglandin e2 had estrogenic effects, I'll keep that in mind.

No e2 is estrodiol, so hcg can stimulate estrodiol as well as testosterone , plus testosterone if too high converts to e2 as well.

If u use low dose nolvadex or clomid they can stimulate hypothalmus to make more testosterone while keep control of e2. Thats the theory.

Try googling pct post cycle therapy used by bodybuilders to stimulate natural testosterone after been on the juice and stopped their natural production . Many guys are doing a similar thing with lower doses long term as an alternative to trt/ testosterone replacement therapy . Its more antiaging stuff than trying for muscle growth.

 

[out2lunch]

I trialed HGH for 6 months. I had borderline low igf-1. it was no help. I have PEM. I was following fibromyalgia research at the time. Dr. Bennett up at the University of Oregon was conducting a trial of HGH on fibromyalgia patients and was seeing some success and my doctor was open to trying it. The trials eventually did not pan out.

Back in 2003, I did low dose GH injections for about 4 months, which did very little for my fibro pain and fatigue. But the one thing it did do, was increase my bone density and muscle mass a bit. I had osteopenia at the time, and nothing my endo tried outside of bisphosphonates improved my density except GH. But the gains I made went away when I stopped the injections. Now I have osteoporosis, and I'm seriously considering the injections again to keep it from getting to the point I need bisphosphonates, which are very nasty drugs to be avoided if at all possible.

For old farts like me who have other health problems like osteoporosis and muscle atrophy, in addition to ME/CFS/FMS, GH might be the best way to go. But those of us on Medicare can't get reimbursed for it unless the deficiency can be proven with a GH stim test. And good luck finding an endo who'll do this to someone in our patient cohort. Using insulin as the stimulant is out because of reactive hypoglycemia, but using large doses of arginine would be like pouring gasoline on the herpes/EBV fire. Both methods are approved, but the side effects are potentially worse than the condition being diagnosed.

Sucks to be us.

 

[out2lunch]

I know that myasthenia gravis is not directly heritable, however I do have a history of autoimmune illness on my mother's side in which my grandfather did have it. I know that hypotonia is an issue with myasthenia gravis so who knows, all I know is that I for certain have autoimmune markers. However I am more suspicious of certain hormone levels and need to have them tested.

My mom had MG even though I've always been seronegative. I respond to Mestinon as she did, and find my constipation and upper body strength worse without it. However, I'm quite brittle when it comes to dosing, and can easily take too much and end up with nasty side effects when I do. But many fibro patients like me do see some improvement with low dose Mestinon, as if we had mild MG.

I think our bodies get the double whammy of not enough growth hormone combined with too little acetylcholine. Heaven knows a decent dose of antihistamine like Benadryl brings out classic MG symptoms in me (sagging facial muscles, diplopia, ptosis, arm weakness) that Mestinon resolves. There's definitely something going on. But EMGs and nerve conduction studies keep coming up normal, as they typically do with other fibro patients. Go figure.

 

[Groggy Doggy]

@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???

My GH stim test (w/ argenine) showed about 0; so yes, low GH definately accounts for a large number of my core ME symptoms. Actually, I think its more common that we realize.

 

[Groggy Doggy]

Does anyone else have all these symptoms? It sounds so much like ME/CFS that I'm surprised we aren't tested routinely. It's been added to my (never-ending) list. Thanks @awkwardlymodern for sharing your story!

Yes, it's definately Bingo!

 

[Groggy Doggy]

I'm blown away by the symptom list for adult growth hormone deficiency on the link given by Hip, as it matches me so well, I can tick nearly every single symptom there.
Trialing human growth hormone due to many of us apparently having it low, was a ME/CFS fad back ages ago (in the 1990s?), I remember people trialing it for ME/CFS. It did help some.

Depends what type of GH they took. Was it Somatropin?

 

[taniaaust1]

Depends what type of GH they took. Was it Somatropin?

no idea what type/brand they took.

 

[taniaaust1]

Depends what type of GH they took. Was it Somatropin?

no idea what type/brand they took.