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I was just diagnosed with severe growth hormone deficiency and am wondering if anyone else has it. I'm feeling overwhelmed and lost.
Has anyone else been diagnosed with adult-onset growth hormone deficiency?
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Have you seen an endocrinologist about this matter? When/if you do, please take someone else along as they can make notes while you get a bit lost in what is being explained to you.
What are your symptoms? I hope they're not contributing to your exhaustion. Feel better....Yours, Lenora.
What are your symptoms? I hope they're not contributing to your exhaustion. Feel better....Yours, Lenora.
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Hip
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Do you know that human growth hormone (HGH) deficiency can produce near identical symptoms to ME/CFS? So if you have severe HGH deficiency, all your symptom may be due to that, and that means you may not have ME/CFS at all.
That would be is very good news, because HGH deficiency symptoms clear up in a matter of days of starting growth hormone injections. HGH deficiency is a very treatable condition. Whereas if you have ME/CFS, it's very hard to find any treatments which improve this. So it would be much better to have HGH deficiency than ME/CFS.
Has you doctor arranged an appointment with an endocrinologist, because HGH deficiency is usually treated with HGH injections? I believe these injections you would give yourself at home.
We had one person on this forum who thought she had ME/CFS for 10 years, due to a misdiagnosis. After 10 years, she discovered she in fact had HGH deficiency, not ME/CFS at all.
Once she started GH injections, she was back to near normal within days, and back to complete normal in a month. See her thread here.
The symptoms of adult HGH deficiency are listed here.
kewia
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Did you get treated in the meantime for it?
Do you also have muscle weakness?
heapsreal
iherb 10% discount code OPA989,
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GH deficiency could come about because many of us don't reach stage 3 and 4 deep sleep where most gh is secreted.
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(I forgot about this thread — I'm sorry!) Long story short: We thought I may have secondary adrenal insufficiency, so I saw a private endocrinologist in the UK who ordered a glucagon stimulation test. It showed I do not have secondary adrenal insufficiency, but I do have several adult onset growth hormone deficiency.
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I have yet to access treatment. In order to access growth hormone injections, I need to have a second stimulation test, but it, along with the injections themselves, are very expensive and I can't afford them right now.
Well, about 35 yrs. ago I was diagnosed with a pituitary tumor. No blood tests were ever done (perhaps they weren't available?), but I did take the drug, bromocriptine, for many years. It disappeared and, as far as I know, I've not had a problem.
Since nothing can be done about it, I'm really backing away from collecting diagnoses, at least at this age. When you're younger I say "do it." It could certainly explain a lot as time passes. Yours, Lenora
Since nothing can be done about it, I'm really backing away from collecting diagnoses, at least at this age. When you're younger I say "do it." It could certainly explain a lot as time passes. Yours, Lenora
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kewia
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Just out of interest, there is more than just one GHD?
Slushiefan
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Reviving this old thread, as I am considering that I may have Growth Hormone Deficiency (GHD) due to several IGF-1 tests coming back very low (barely detectable levels) over the years, the most recent in the last few months. Summarizing my progress notes here for reference.
I suspect that HGH (Human Growth Hormone) could act as a palliative treatment for many CFS patients, and may be root cause in a few.
As was mentioned here before (summarizing again for future readers) the symptoms of low HGH tightly mirror those of CFS.
Overview of HGD Diagnosis history: Until recently HGD was limited to diagnosis by eg short stature in children, not suspected w/ an adult onset at all, and is currently 'very rare' (affecting 1 in 100,000). Approaching your doctor or endocrinologist with suspicion of this condition will likely be met with incredulousness.
The good news is that stimulation testing is currently recognized as diagnosis, so you should be able to request that.
Summary of current state of treatment: Googling shows that as of 2020 the FDA approved treatment for HGD is Sogroya somapacitan - which is a once a week injection. There is also SKYTROFA, also once a week.
Information and impt links:
Ken
I suspect that HGH (Human Growth Hormone) could act as a palliative treatment for many CFS patients, and may be root cause in a few.
As was mentioned here before (summarizing again for future readers) the symptoms of low HGH tightly mirror those of CFS.
All credit to @Hip - Thank you Hip, you're definitely the best of them!
Overview of HGD Diagnosis history: Until recently HGD was limited to diagnosis by eg short stature in children, not suspected w/ an adult onset at all, and is currently 'very rare' (affecting 1 in 100,000). Approaching your doctor or endocrinologist with suspicion of this condition will likely be met with incredulousness.
The good news is that stimulation testing is currently recognized as diagnosis, so you should be able to request that.
Summary of current state of treatment: Googling shows that as of 2020 the FDA approved treatment for HGD is Sogroya somapacitan - which is a once a week injection. There is also SKYTROFA, also once a week.
Information and impt links:
- The following link is a great 2021 pdf (5 minute read) guide of the condition and diagnosis: https://pro.aace.com/sites/default/files/2020-10/AACE Adult GHD for PGAN_FINAL.pdf
- The symptoms of adult HGH deficiency are listed here. Also is a questionnaire you can take to your doctor/endo already filled out (any CFS patient will have all or almost all of these).
- NIH - 2022 - Adult Growth Hormone Deficiency- Clinical Management: https://www.ncbi.nlm.nih.gov/books/NBK425701/
Ken
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Hip
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There was one member here who found out that her ME/CFS was actually just HGH deficiency, she posted a thread about this. Once she was given HGH injections, she rapidly returned to full health.
Interestingly, she obtained no benefits from injecting HGH secretagogues such as CJC-1295 and ipamorelin. This is a shame, as these two peptides are easy to buy online, and are relatively cheap. So injecting them would have been a good way to see if you have HGH deficiency. But I guess if there is a dysfunction with your body's HGH production, these secretagogues may fail to stimulate HGH release (they may only work in healthy people).
I tried both these secretagogues, and later actual HGH injections, but did not notice any benefits (except perhaps some mild improvements in anhedonia from HGH injections).
Slushiefan
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Hard to express how much this input is appreciated @Hip.
I can bet secretagogues would have been my next go-to step if I run into difficulties pursuing this. I have approached the GHD question before and been shot down - so I already know GHD will be a push-the-rope-uphill situation.
I tend to find my own workarounds when things get tough, and the secretagogues blind rabbit hole might have stopped me from making progress. Your information re: success of this path will help keep things on target.
Hip
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If you want to try HGH injections as a way to test for deficiency, note that there are lots of fakes sold online, so hard to know if the stuff you are buying is genuine. A good website that reviews HGH brands is here (archived version).
I bought Jintropin HGH from here. The box came with a validation sticker which checked out on the manufacturer's website, so seemed legit as far as I can tell.
I tried Genotropin (legally rx'ed by a physician and bought through my local pharmacy so pretty sure it was real). Only did a low dosage. Helped with my sleep, surprisingly gave me some carpal tunnel pain pretty quickly (thought that would only be at higher dosages), and didn't do much besides that. I didn't end up refilling (very expensive for real pharma version not covered by insurance).
Slushiefan
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So appreciative for this info. I have been researching this all morning. Based on my research, for me I think the best approach will be a quick elimination test.
I am located in the US in California.
If anyone wants to avoid public posting and has addt details, I am experiencing confusion in dosing, type of HGH to order that can be shipped eg: refrigeration, reliable sellers; please feel free to dm me.