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My CFS/ME was GHD

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
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. :(

I have extremely high LDL (bad cholesterol)
I've had out of normal range low blood sugar show up on 2 blood tests in the past (its now high and I probably have diabetes now)
I have insulin resistance.
I have elevated triglyceride levels
My body is highly sensitive to cold and heat

I have issues with high BP at times (for a while my BP was constantly high)
I was getting cold hands and feet (others used to remark on this)
I have low heart rate when Im sleeping (my heart gets down to at least 52, shown by test)
I certainly have poor venous access, the blood nurse one time who came out to my home to take my blood couldn't get enough, I wouldn't bleed no matter what she had me do and she had to come back enough day. (she even tried to get the blood from my feet tops when everywhere else failed)
and I match the mood stuff too but have put it down to my issues with insulin resistance (but before they knew I had insulin resistance, that mood symptom got a borderline personality disorder diagnoses put onto me which I know is wrong)
..............

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.
 

SDSue

Southeast
Messages
1,066
Yes Sue, do you have the hyperinsulinemia and all that too?
You would pick the one I don't have, lol. (yet). But most of the others, yes. There must be something about us that rules out HGH in most cases. Not sure what that might be, but I'll be asking my ME doc.
 

adreno

PR activist
Messages
4,841
@adreno: there is a lot of disagreement between studies and labs re: normal age adjusted IGF-1 ranges. this study, for example, shows my result as abnormally low:
Thanks for this. Mine measured 142 at age 38, which is rather low, too.

Also, I understand that the references assume a drop in GH in accordance to age, but wouldn't it be better to have the GH levels of someone younger?
 

Gingergrrl

Senior Member
Messages
16,171
If I can get to Lab Corp tomorrow as planned, I am doing the blood test for IGF-1 along with my thyroid tests for my appt on Thurs with Endo. I am going to ask him to explain if Lab Corp has a new testing protocol (versus just a new range) b/c if not, then my prior score of 85 is ridiculously low. That was in Jan so now that it is April, not sure what my score will be but am certain it will still be on the low end.

I was also thinking of something else my Endo said which was that he is willing to prescribe me the HGH shots without any further testing b/c he sees how low it is and how ill I am BUT insurance will not cover it w/o the stim test/MRI and it would be thousands of dollars. However, I also know that I often try one dose of a med and cannot tolerate it and the whole thing is a fail. So I am wondering if he can prescribe me just one weeks worth of shots (at the lowest dose or micro dose possible) and I will pay for them privately.

If by some miracle I feel dramatically better, I can pursue further testing but if one shot at the micro dose in intolerable, then I will know that I have tried it (without having to put myself through the stim test & MRI or battle with insurance.) Just thinking out loud and not sure what my Endo will say on Thurs but he is a very open-minded person.
 

awkwardlymodern

Forcing the past to blend with the future
Messages
52
@SDSue I think one thing that rules out HGH treatment in a lot of cases is that there are other hormonal abnormalities which need to be corrected first--HGH won't work if you have untreated HPA axis abnormalities, thyroid, sex hormones etc.

In my case all of these hormones were in an optimal range and GH "stuck out" as the lone culprit. Sorry I don't have the labs with me now but T4, T3 (corrected with naturethroid), FSH, LH, estrogen, testosterone, cortisol and DHEA were all mid-normal range.

Conversely (I've heard) if abnormalities in other hormone axes are corrected, then GH should return to normal unless you have a primary GH deficiency which is what the various stim tests are meant to detect. So basically it seems most people with real CFS/ME have a secondary, not primary GH deficiency.

But a primary GH deficiency, as others noticed, can mimic CFS/ME...so, as I've learned, it's important to rule out!

@adreno yeah this is a big debate in anti-aging medicine. as others have mentioned IGF-1 does increase cancer risk, so if you're taking HGH to boost your IGF-1 to a younger level (vs. taking it to maintain a mid-normal range for your age) then you may increase your cancer risk above the norm.

@amaru7 yep, with my history I tend to be wary too. All I can say for now is that after six weeks on GH replacement I feel pretty much like I did before my illness started...heh, with the exception of the anger and depression at having lost so many years, friends and opportunities to this!

Here's a complete list as you requested and hope this is helpful to anyone else who is investigating a possible primary GHD. Here is Hip's list, showing which symptoms I had and how much they are improved after GH replacement.

***Pretty much all of my symptoms were accounted for by Hip's list. The only symptoms NOT on his list are: intermittent low-grade fevers (from my autoimmune diseases?), a general low-grade feeling of malaise, and increased susceptibility to bacterial infections. My WBC count has increased from low-normal to mid-normal since starting the GH. GH deficiency can also cause immune issues from what I have read.

(Keep in mind, from what I've gathered, after a long-standing growth hormone deficiency it can take several months before symptoms reach their maximum improvement on GH. These are my results after approx. 6 weeks of GH).

Adult Human Growth Hormone Deficiency Symptoms


Psychological and Cognitive Symptoms
Anxiety, apprehension, nervousness.

-YES--Not improved much, but my life situation would make anyone anxious. I interpret my anxiety as a natural reaction to being stranded at age 34 with no "life" after years of illness.

Shyness, withdrawal from others, feelings of social isolation.

-YES--DRAMATICALLY improved. Before GH I felt incapable of enjoying others' company, now it seems to come naturally.

Sadness, hopelessness, depression.

-YES, DRAMATICALLY improved. My situation is very anxiety-provoking, but before GH I felt constantly suicidal (the suicidal thoughts felt very "chemical," like they were coming from something outside of my own psychology) and changing anything seemed futile, now I feel I have a decent chance of starting a new life. I feel more angry than depressed now--angry I lost my youth to these illnesses, and motivated to change my situation!

Labile emotions (ie, emotions change rapidly and unpredictably, and can be exaggerated).

-YES, MODERATELY improved. I feel more control over my emotions than before.

Poor memory and impaired concentration.

-YES, DRAMATICALLY improved. I felt like I was going senile before. I have occasional brain fog now but nothing like before.

Sexual
Decrease in sexual function and interest (low libido). This is associated with hair loss and baldness in men.

-YES, MODERATELY improved.

Energy Levels
Fatigue, tiredness, and reduced vitality.

-YES, DRAMATIC improvement. I no longer feel fatigued during the day although I still require more sleep than most people (9-9.5 hours)

Decreased energy due to decreased metabolic rate.
-UNSURE I am not clear on what my metabolic rate was. I feel I was in a catabolic state, losing muscle, prior to starting GH.

Lower tolerance to exercise (due to decreased cardiac output), decrease in strength and stamina.
-YES DRAMATICALLY Improved. I've started exercising again and it seems to be helping instead of causing crashes.

Metabolic
High levels of LDL (the "bad") cholesterol.
Changes in blood cholesterol concentrations (increase in LDL and decrease in HDL).
-YES to both. I haven't had these rechecked yet.

Low blood sugar (dizziness or fainting weakness or tiredness, headaches).
Insulin resistance.
-??? I had issues with reactive hypoglycemia early in my illness, but later on my blood sugar crept up gradually. A1C test suggested an average blood sugar of 90mg/dL.

Elevated triglyceride levels.
-YES have not rechecked this yet.

Increased sensitivity to cold or heat.
-YES, MODERATELY improved.

Heart and Circulation
Increased arterial plaque and blood pressure.
-??? on plaque,
-YES, DRAMATIC improvement I did have high blood pressure which has been decreasing.

Increased vascular wall thickness.
-???

Weakened heart muscle contraction and heart rate.
-??? unsure about the strength of my heart contractions.

Heart problems.
-YES, DRAMATIC improvement. My heart felt like it was always beating very hard (maybe to compensate for weakened muscle?) This has recently gone away.

Cool peripheries (cold hand and feet).
-YES, MODERATE improvement. I had feet that were so cold they were painful and I needed thermal insulation socks year-round, now my feet are just slightly cool (not enough to notice or cause discomfort).

Poor venous access.
-??? I had chronic venous insufficiency in my arms and legs (this was the cause of my POTS) and this has slightly improved--I can now tolerate walking part of the day without my compression stockings.

Muscles
Decreased muscle mass (muscle size) and strength.
-YES, MILD improvement: Improving gradually, I have been building muscle since I started GH.

Reduced exercise performance.
-YES I was unable to exercise and am building up to a mild/moderate exercise program.

Body Weight and Body Fat
Decreased lean body mass.
-YES I was underweight but with high body fat percentage. I think this takes time to change but I have already noticed an increase in weight which is probably more muscle because my body feels denser and less flabby.

Increase in weight and fat deposition all over the body, particularly, about the waist and trunk.
-NO I was always underweight, even with untreated Hashimoto's. I'm guessing this was from malabsorption from celiac disease damage (I was on a strict gluten-free diet with no detectable celiac antibodies, but my gut was not healing like it should have). Interestingly I have gained weight since starting GH. My hypothesis is the GH is helping to repair the gut damage, allowing me to absorb nutrients normally.

Bones
Decrease in bone density, making the bones brittle and weak.
Increase in rate of fracture in middle age and beyond.
-???--I have not had bone density tested.

Skin
The skin becomes dry, thinner, looses its elasticity, and fine lines and wrinkles make an appearance.
-YES, MODERATE improvement: my unexplained premature thinning and sagging of skin...definitely improving. My skin feels denser and thicker and I look younger.

Hair
Baldness (in men).
-YES, MODERATE improvement I'm a woman so baldness doesn't apply, but one obvious symptom of GHD is slow hair growth. My hair grew very fast before my infection (almost 1 inch per month) and then slowed down to only 1/4 inch per month a year later. From what I can tell so far it is growing 1/3-1/2 inch per month now, so an obvious improvement.

Sleep
Sleep problems.
-YES, MODERATE improvement: Severe sleep problems: alpha intrusions, excessive daytime sleepiness and delayed sleep phase. I find I need less sleep now: from 12-14 hour before to 9-9.5 hours now.
 
Last edited:

A.B.

Senior Member
Messages
3,780
(Keep in mind, from what I've gathered, after a long-standing growth hormone deficiency it can take several months before symptoms reach their maximum improvement on GH. These are my results after approx. 6 weeks of GH).

I've read that most improvement happens within the first six months. There are some small improvements afterwards as well.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
@awkwardlymodern - thank you SO MUCH for sharing, because I have the exact same issues.

ITT Test:

I took the insulin tolerance test this past January during my visit to Mayo. It should be stated that I had the ACTH stimulation test and the results were weird, but not conclusive. However, I had terrible reactions to it, so I sympathize with those of you who don't want to try a 'challenge' test (@Gingergrrl, I'm looking at you.) ;)

However, throughout, I felt more or less as I do when I'm quite ill: dizzy and weakened, but not anything more than that. I wouldn't have liked to try to get up and shuffle around, but I was in a bed, propped up with pillows, a glucose drip ready to go in my right arm just in case, and super-sugary drinks as well.

At one point, my blood sugar dropped into the low 20s. The techs got a little panicky: do you know who you are? Can you tell me who the president is? I had no idea what a blood sugar that low really meant, so I told them my full name, my birthday, and the president and rolled my eyes a little. I said, "I just feel dizzy, and sick like I normally do." Then I added, "actually, this is a lot like how I feel when it's bad. I wonder if my problems are blood-sugar related?" After, one of the techs said, "for you to be carrying on a conversation like that? You've got to be used to this state." Hmm.

My blood sugar didn't want to stabilize, either. It climbed predictably back into the 70s but then took another dive back to the 40s. Before I left, I'd physically drank 100-g of sugar, took a full glucose drip, and eventually got dextrose injected directly into my bicep. (The worst part of the entire experience - holy crap that aches). With my blood sugar in the 200s, then dropping slowly into the 180s, they let me go.

At periodic intervals for the rest of the day I was ravenous. I think I consumed more sugar that day than I do in the average week.

Results:

My results came back: my GH had climbed to 1.85 and then dropped while the test was still underway. Generally, an adult is considered growth-hormone deficient if their GH is below 5 on the ITT. It's severe if it's below 3. My cortisol never rose at all.

My perpetually clueless Mayo Endo:


The worst part of all of this is that my endo was so at a loss. I mean, borderline criminally clueless, and I'm only realizing the full extent of that, now. She insisted on treating me with cortisol, even though my cortisol is at normal levels when I'm not under stress. My ACTH is low, but apparently I stockpile cortisol until I need it. Then I use it up. Perhaps not the best system, but it is a system, and let me tell you how little my system likes EXTRA cortisol. It hates it. It induces a PEM-like state where I can't move and can barely think. :confused:

When I told her that and added, "but the growth hormone is pretty low, too. Maybe I could try that, instead?" she shot me down. She said GH is too expensive, my insurance would never pay for it, and I'd bankrupt myself, and was I sure I didn't want to just try the cortisol again? because maybe my reaction was just a coincidence. :bang-head::bang-head::bang-head:

Regarding IGF and GHD:


She also seemed really confused as to why my IGF was normal. Guys, IGF does NOT HAVE TO BE LOW for GH to be low. Even in profound GHD, it can be normal. These values are sometimes related, but not necessarily related:

....Low levels of insulin-like growth factor-I (IGF-I) levels can be diagnostic in severe GHD, but since IGF-I is often normal in AGHD, it is often necessary to confirm diagnosis with provocative testing (Kargi and Merriam, 2013).
(boldface mine)

In other words, the ITT is still the gold standard, and you can't diagnose based off of IGF-I levels. By the same token, normal IGF-I does not mean you don't have GHD.

Regarding the relationship between cancers and GH supplementation:

...the correlation is weak:

....Swerdlow et al. (2002) reported an increased incidence of cancer formation in a cohort study of 1,848 patients in the UK treated with GH from 1959 to 1985. Cancer incidence was assessed in 1995 and again in 2000. Despite the author’s assertion that there was a high incidence of cancer and mortality associated with cancer, the total number of cancer diagnoses in the cohort was only 12 – 2 colon cancer, 2 Hodgkin’s lymphoma, 2 bone cancer, and 1 each from mouth, liver, bile duct, cervix, ovary, and testis. Only the first two increases were statistically significant. Of note, one patient who developed colon cancer may have had familial polyposis. Despite the small number of cancer cases, there is an epidemiological association of cancer rates in the setting of increased IGF-I levels but not of IGF-binding protein-3 (IGFBP-3), resulting in a high IGF-1 to IGFBP-3 ratio (Grimberg and Cohen, 1999; Shim and Cohen, 1999; Cohen et al., 2000). IGF-1 has been detected in colorectal cancers and is a strong stimulator of colorectal cancer cell proliferation in vitro (Lahm et al., 1994), but GH treatment usually results in increases in both IGF-I and IGFBP-3.
(boldface mine)

In other words, having high IGF-I : lower IGF-binding protein-3 can make you more susceptible to cancers - maybe. But not high IGF-I alone.

Insurance?

....so am I to believe that with an MRI showing a pituitary tumor, and my ITT test, I could get my insurance to pay for HGH injections? What country do you live in where that is possible, or was my endo just talking out of her... uh... patootie? Because I can't imagine having my GH that low is good for me, regardless of whether I have additional health problems.

Both of the quotes are from:

Reed, M. L., Merriam, G. R., & Kargi, A. Y. (2013, June 4). Adult Growth Hormone Deficiency – Benefits,
Side Effects, and Risks of Growth Hormone Replacement
[Electronic version]. Front Endocrinol
(Lausanne)
, 4(64). doi:10.3389/fendo.2013.00064
 

Gingergrrl

Senior Member
Messages
16,171
@JaimeS Thanks for tagging me and my entire idea to get re-tested for GH and IGF-1 is on hold indefinitely as I am too ill to go do thyroid tests or make it to my Endo appt. long story that I have been ranting about in another thread. Best wishes to you in solving your GH issue.
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Thanks, @Ema !

I have never been so sorry to live in the arse-end of nowhere since I've gotten ill. The endos here have only ever seen diabetes, hypo- and hyperthyroid, and menopause. It's maddening, like only insulin, T3, TSH, and estrogen even exist! The first endo I had here was not from here, and thought I might have 21-OHase deficiency. (Good shot, and nice guess!) She moved back home before I could ever get a second appointment.

Once of the worst snafus around this illness is finding that new doctor and explaining everything from scratch. "Yup. POTS. Yup. adrenal insufficiency. Yup. GH-deficiency. No, really. Yes, the ITT test. 1.85. They seemed sure. MRI. Three times. Yup." If you look too disaffected, you don't seem ill enough. If you let show how this is affecting you, you're 'just' depressed.

I dread the dog-and-pony show. And as always, I'm grateful for the support I find here.

-J
 

Hip

Senior Member
Messages
17,824
@awkwardlymodern
Can I ask, what dose of HGH (in IU) are you taking each day to treat your HGH deficiency? Does it require taking several HGH injections each day, or is just one daily HGH injection sufficient?

The half life of HGH I think is around the 2 hour mark, so the HGH from an injection would have mostly left the body by around 8 hours later. Thus I am wondering whether it is necessary to take more than one HGH injection each day, to maintain your HGH levels.
 

Rlman

Senior Member
Messages
389
Location
Toronto, Canada
@SDSue I think one thing that rules out HGH treatment in a lot of cases is that there are other hormonal abnormalities which need to be corrected first--HGH won't work if you have untreated HPA axis abnormalities, thyroid, sex hormones etc.

In my case all of these hormones were in an optimal range and GH "stuck out" as the lone culprit. Sorry I don't have the labs with me now but T4, T3 (corrected with naturethroid), FSH, LH, estrogen, testosterone, cortisol and DHEA were all mid-normal range.

Conversely (I've heard) if abnormalities in other hormone axes are corrected, then GH should return to normal unless you have a primary GH deficiency which is what the various stim tests are meant to detect. So basically it seems most people with real CFS/ME have a secondary, not primary GH deficiency.

But a primary GH deficiency, as others noticed, can mimic CFS/ME...so, as I've learned, it's important to rule out!

@adreno yeah this is a big debate in anti-aging medicine. as others have mentioned IGF-1 does increase cancer risk, so if you're taking HGH to boost your IGF-1 to a younger level (vs. taking it to maintain a mid-normal range for your age) then you may increase your cancer risk above the norm.

@amaru7 yep, with my history I tend to be wary too. All I can say for now is that after six weeks on GH replacement I feel pretty much like I did before my illness started...heh, with the exception of the anger and depression at having lost so many years, friends and opportunities to this!

Here's a complete list as you requested and hope this is helpful to anyone else who is investigating a possible primary GHD. Here is Hip's list, showing which symptoms I had and how much they are improved after GH replacement.

***Pretty much all of my symptoms were accounted for by Hip's list. The only symptoms NOT on his list are: intermittent low-grade fevers (from my autoimmune diseases?), a general low-grade feeling of malaise, and increased susceptibility to bacterial infections. My WBC count has increased from low-normal to mid-normal since starting the GH. GH deficiency can also cause immune issues from what I have read.

(Keep in mind, from what I've gathered, after a long-standing growth hormone deficiency it can take several months before symptoms reach their maximum improvement on GH. These are my results after approx. 6 weeks of GH).

Adult Human Growth Hormone Deficiency Symptoms


Psychological and Cognitive Symptoms
Anxiety, apprehension, nervousness.

-YES--Not improved much, but my life situation would make anyone anxious. I interpret my anxiety as a natural reaction to being stranded at age 34 with no "life" after years of illness.

Shyness, withdrawal from others, feelings of social isolation.

-YES--DRAMATICALLY improved. Before GH I felt incapable of enjoying others' company, now it seems to come naturally.

Sadness, hopelessness, depression.

-YES, DRAMATICALLY improved. My situation is very anxiety-provoking, but before GH I felt constantly suicidal (the suicidal thoughts felt very "chemical," like they were coming from something outside of my own psychology) and changing anything seemed futile, now I feel I have a decent chance of starting a new life. I feel more angry than depressed now--angry I lost my youth to these illnesses, and motivated to change my situation!

Labile emotions (ie, emotions change rapidly and unpredictably, and can be exaggerated).

-YES, MODERATELY improved. I feel more control over my emotions than before.

Poor memory and impaired concentration.

-YES, DRAMATICALLY improved. I felt like I was going senile before. I have occasional brain fog now but nothing like before.

Sexual
Decrease in sexual function and interest (low libido). This is associated with hair loss and baldness in men.

-YES, MODERATELY improved.

Energy Levels
Fatigue, tiredness, and reduced vitality.

-YES, DRAMATIC improvement. I no longer feel fatigued during the day although I still require more sleep than most people (9-9.5 hours)

Decreased energy due to decreased metabolic rate.
-UNSURE I am not clear on what my metabolic rate was. I feel I was in a catabolic state, losing muscle, prior to starting GH.

Lower tolerance to exercise (due to decreased cardiac output), decrease in strength and stamina.
-YES DRAMATICALLY Improved. I've started exercising again and it seems to be helping instead of causing crashes.

Metabolic
High levels of LDL (the "bad") cholesterol.
Changes in blood cholesterol concentrations (increase in LDL and decrease in HDL).
-YES to both. I haven't had these rechecked yet.

Low blood sugar (dizziness or fainting weakness or tiredness, headaches).
Insulin resistance.
-??? I had issues with reactive hypoglycemia early in my illness, but later on my blood sugar crept up gradually. A1C test suggested an average blood sugar of 90mg/dL.

Elevated triglyceride levels.
-YES have not rechecked this yet.

Increased sensitivity to cold or heat.
-YES, MODERATELY improved.

Heart and Circulation
Increased arterial plaque and blood pressure.
-??? on plaque,
-YES, DRAMATIC improvement I did have high blood pressure which has been decreasing.

Increased vascular wall thickness.
-???

Weakened heart muscle contraction and heart rate.
-??? unsure about the strength of my heart contractions.

Heart problems.
-YES, DRAMATIC improvement. My heart felt like it was always beating very hard (maybe to compensate for weakened muscle?) This has recently gone away.

Cool peripheries (cold hand and feet).
-YES, MODERATE improvement. I had feet that were so cold they were painful and I needed thermal insulation socks year-round, now my feet are just slightly cool (not enough to notice or cause discomfort).

Poor venous access.
-??? I had chronic venous insufficiency in my arms and legs (this was the cause of my POTS) and this has slightly improved--I can now tolerate walking part of the day without my compression stockings.

Muscles
Decreased muscle mass (muscle size) and strength.
-YES, MILD improvement: Improving gradually, I have been building muscle since I started GH.

Reduced exercise performance.
-YES I was unable to exercise and am building up to a mild/moderate exercise program.

Body Weight and Body Fat
Decreased lean body mass.
-YES I was underweight but with high body fat percentage. I think this takes time to change but I have already noticed an increase in weight which is probably more muscle because my body feels denser and less flabby.

Increase in weight and fat deposition all over the body, particularly, about the waist and trunk.
-NO I was always underweight, even with untreated Hashimoto's. I'm guessing this was from malabsorption from celiac disease damage (I was on a strict gluten-free diet with no detectable celiac antibodies, but my gut was not healing like it should have). Interestingly I have gained weight since starting GH. My hypothesis is the GH is helping to repair the gut damage, allowing me to absorb nutrients normally.

Bones
Decrease in bone density, making the bones brittle and weak.
Increase in rate of fracture in middle age and beyond.
-???--I have not had bone density tested.

Skin
The skin becomes dry, thinner, looses its elasticity, and fine lines and wrinkles make an appearance.
-YES, MODERATE improvement: my unexplained premature thinning and sagging of skin...definitely improving. My skin feels denser and thicker and I look younger.

Hair
Baldness (in men).
-YES, MODERATE improvement I'm a woman so baldness doesn't apply, but one obvious symptom of GHD is slow hair growth. My hair grew very fast before my infection (almost 1 inch per month) and then slowed down to only 1/4 inch per month a year later. From what I can tell so far it is growing 1/3-1/2 inch per month now, so an obvious improvement.

Sleep
Sleep problems.
-YES, MODERATE improvement: Severe sleep problems: alpha intrusions, excessive daytime sleepiness and delayed sleep phase. I find I need less sleep now: from 12-14 hour before to 9-9.5 hours now.

@akwardlymodern, how weak were you before GH treatment? could you work? could you walk? go shopping? out of bed all day? were you housebound? bedbound?

Also, did you feel cold in the body not just hands/feet?

Thanks!
 

Gingergrrl

Senior Member
Messages
16,171
I found out definitively from two recent tests from my Endo that growth hormone deficiency is not my core issue and my numbers on two tests which measure it were good this time and no further testing needed in this area. I almost wished it was b/c easier to attempt to fix than what I am facing instead :aghhh: :bang-head:!!
 

JaimeS

Senior Member
Messages
3,408
Location
Silicon Valley, CA
Ugh, @Gingergrrl ! That sucks, I'm so sorry. I have an appointment with yet another local endo in a few days. I don't even know what I'm going to say. I think I'm at the stage where I'm going to be so deadpan I can't be taken seriously - but I also can't invest any more hope or energy into getting well - or, frankly, in trusting a new practitioner.

-J
 

Gingergrrl

Senior Member
Messages
16,171
Jaime, it's okay and I never suspected that GHD was my core issue. I had severe mono/EBV which reactivated after I was exposed to black mold in our A/C system which then triggered severe MCAS. My immune system never stood a chance with breathing in black mold for two years so my issue is totally different than the original poster of this thread.

Good luck with your future appts.