Panhypopituitarism - Do we need GH????

[Jesteroony]

Hi guys this is my second forum post today as I don't usually use the forums but have so much I need advice on recently.

My old endo consultant who was absolutely fantastic left a few years ago and was replaced with someone who I just have absolutely no faith in!
On every appointment he is hell bent on taking me off GH even though i am 23 years panhypo and have taken it for decades and told him I find it beneficial.

He claims there is now research that says it isn't needed but i recently had a week off taking it whilst on holiday, I just forgot to take it, and by the end of the holiday I had a massive energy and wellbeing drop and didn't know why as I had forgotten I hadn't taken the GH.
Has anyone else had there Endo mention this? Do you take it? Do you find it helpful?

Thanks for any replies...

[member_31784]

Just wondered if you get an annual Growth Hormone review? I do and they have adjusted my levels as I get older also need to see via questionnaire that you still feel benefits. I worry about being taken off it as my weight rose dramatically before being prescribed it and energy levels were terrible. Even as we age I think it’s still important for cell renewal.
Good luck Kare

[Carl]

I don't have Panhypopituitarism, just run of the mill hypopituitarism, I take Hydro and have a Testosterone injection 12-weekly. I am monitored for GH levels using an IGF-1 blood test once a year or so. My Endo has said that should the blood test start to indicate a drop in GH they would do a 'dynamic' test, which I believe to be an Insulin Stress Test.

I'll quote something I saw from an Endo recently said that: in adults energy levels and quality of life can greatly improve with GH replacement. It helps the body use fat as energy source and hence helps energy levels. Their experience was that panhypo pituitary patients feel better and literature says about 30% feel better [on GH]. Need to optimise intermediary metabolism.

So it doesn't sound like this Endo would agree with your Endo (or they don't read the same research papers!). If they are going to take you off GH, they'd surely do some tests first to prove whether your body needs it or not? Sounds like you may need a second Endo opinion. As said in the other thread, also would be worth ringing the Endo Nurse helpline https://pituitary.org.uk/support-for-yo ... -helpline/

[steve]

Hi,
Based purely on what you have said, as an educated layman (with GH deficiency), I would say your endo is talking rubbish.

Have you had an IGF-1 test recently? Is it above the the normal range for your age? If it is then your GH does should be reduced a little at a time with further IGF-1 tests after each reduction. If your IGF-1 is in the normal range then I don't see any reason to reduce (or eliminate) your GH dose.

I am not a doctor and it's possible that the above is completely wrong. Never trust internet advice from anonymous strangers!

If I was in your situation then I would try and get my GP to refer me to a different endo, failing that I would ask your endo to supply references to this "new research".

Good luck
Bets Regards, Steve

[Jesteroony]

Thanks guys for your replies, all very helpful.
i did have a fantastic endo for many years but since his retirement the chap I have now has zero patient skills, makes no eye contact and just will not let you speak, he disagrees with everything I say, when I get a brief second to speak and living in Chelmsford, essex I believe he is my only option, apart from going back to London.
Working full time makes this difficult but to be honest he concerns me so much that I may have too.
He missed my raised liver profile, which was picked up by bloods done by the GP and has led to a biopsy which shows a very fatty liver, caused by long term steroid use according to the biopsy results, he has completely disagreed with this and says has nothing to do with my steroid intake.
Maybe he is right but I have no confidence in him.
Thanks again guys.

[DerryAcro]

hi
sorry in advance for length of post.

Abstract
Nonalcoholic fatty liver disease (NAFLD) is the most common cause of chronic liver disease in the industrialized world. The prevalence of NAFLD is increasing, becoming a substantial public health burden. NAFLD includes a broad spectrum of disorders, from simple conditions such as steatosis to severe manifestations such as fibrosis and cirrhosis. The relationship of NAFLD with metabolic alterations such as type 2 diabetes is well described and related to insulin resistance, with NAFLD being recognized as the hepatic manifestation of metabolic syndrome. However, NAFLD may also coincide with endocrine diseases such as polycystic ovary syndrome, hypothyroidism, growth hormone deficiency or hypercortisolism. It is therefore essential to remember, when discovering altered liver enzymes or hepatic steatosis on radiological exams, that endocrine diseases can cause NAFLD. Indeed, the overall prognosis of NAFLD may be modified by treatment of the underlying endocrine pathology. In this review, we will discuss endocrine diseases that can cause NALFD. Underlying pathophysiological mechanisms will be presented and specific treatments will be reviewed.

below is a link to the full report

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4607905/

another interesting report on Long-term effects of growth hormone replacement therapy on liver function

https://www.sciencedirect.com/science/a ... via%3Dihub

there are numerous reports on this available on the net goggle is a wonderful tool


it would seem to me reading these reports and I AM NO EXPERT that Growth hormone deficiency and liver disease go hand in hand and GH replacement therapy was an effective treatment for both conditions so taking you off GH replacement would not be the way forward.

I would print off full reports and give them to my endo if i was having same difficulties as you trying to communicate with him.

I would recommend getting a A1C blood test to check for diabetes given you have fatty liver disease

hope this is of some help

[Jesteroony]

Many thanks for that reply and makes very interesting reading...
I am 13 stone, 5ft 11 and train at the gym regularly 3 times a week for last 8 years, I feel a very lucky person as many with my condition I know are not always as well.
So not someone you would immediately look at and think would have a liver which has been described by the Biopsy report as similar to an severely obese persons or a diabetic, between 30 and 40% fat, as you say it must be something relatable to my panhypopituitarism?
Will definitely look in to this much more...
Thanks again...

[Carl]

Great post @DerryAcro

[Tim_46750]

Hi

I thought I'd save this small part from a story of my experiences that I wrote but never got around to sharing. This bit is about my experiences with GH.

I was told that this is more of a 'repair & replacement' hormone in adults. It should help with muscle build up, energy levels etc & improve my 'quality of life' - something of an understatement.

Never mind "you don't know what you've got till it's gone" - with this growth hormone I didn't know what I was missing till I got it back!
Over the past year or two (and possibly the past few years) I've suffered inexplicable tiredness & lack of energy, occasional depression, anxiety attacks & moodiness that goes beyond just being a grumpy old man. Away from a few close friends I've had difficulty mixing, or gone to the other extreme and been unstoppably chatty. I’d also developed a tendency to be easily upset by trivial things. The combination of all of the above was certainly proving difficult, and far more so than the tendency to gain weight & lose a little muscle (& possibly bone) strength which was the main thing I was being told about GH. Or perhaps the main things I was remembering, concentration falls off with energy levels too!

After only a few days on growth hormone I was noticing a huge improvement, and all of the above seem to have gone away. I was so much more energetic that I was able to speed up my phased return to work, and so much happier. It’s not a miracle cure: I still get tired, partly because I sometimes sleep badly. I don’t think I can concentrate as well as I used to either, but that might be the tiredness.

Then there was a gap between the end of my growth hormone trial and the start of regular prescriptions, which was rather longer than anticipated. It was only a few weeks, but boy did I miss it. We were on holiday with friends for one of those weeks, walking in Cornwall again (not as much as I used to, but slowly I’m building back up). I kept getting overly emotional or fixated on little things – for instance I dropped my phone and getting it fixed was the most important thing in the world. Absolutely essential – even though I didn’t really need it on holiday, signal was poor anyway and I could wait until I got home.


So yes, I think GH can be essential. It certainly is for me!

[Carl]

Thanks for posting this Tim. I am currently only taking Hydro and Testosterone replacement, but I'm beginning to think I need to look into GH replacement. So many of the things you've said resonate, particularly the lack of energy and bad (grumpy) mood.