Panhypopituitarism Introduction

[MAV6]

Hi there! Nelson suggested that I post here instead of on ********.

I have "panhypopituitarism." I realize this is rare. I produce nothing from my pituitary. I had a pituitary adenoma that was called a "prolactinoma." After it was surgically removed (endoscopic endonasal approach), and a very extended period of time on cabergoline, I did not recover my hormonal levels.

For the record, the tumor is gone. However, it apparently permanently damaged my pituitary gland.

I've had just about every test you can think of. I've had dexamethasone suppression, cosyntropin stimulation, glucagon stimulation, insulin tolerance testing, multiple pituitary MRIs with contrast, 24 hour urine cortisol, water deprivation testing, the list goes on and on.

I have diabetes insipidus because I don't produce ADH (vasopressin), secondary adrenal insufficiency, secondary hypogonadism, hypothyroidism, growth hormone deficiency, and now we're actually looking at my aldosterone and angiotensin II levels as well, so there's still some ongoing testing. I also have developed some other conditions like osteopenia, polyuria where I produce 6-8 liters of urine per day and frequently end up in the ER with hypernatremia, and some kind of GI disorder where I have diarrhea 40-60 times a day. Those are likely from the hormone deficiencies and should resolve when I start hormone replacement.

As far as I understand right now, things like clomiphene monotherapy are not options for me even though I would like to maintain fertility to have kids since my pituitary will not produce LH and FSH even with stimulation. I'm in my early 30s, and my girlfriend and I have plans to get married this year. I was really looking forward to starting a family, but I understand that may not be an option. Maybe we'll adopt?

I am scheduled to start training with Omnitrope. So, in the very near future, I will be on testosterone cypionate at 100 mg a week, 2 IU of Omnitrope per day, 10 mg of hydrocortisone AM and another 5 mg PM, desmopressin nasal spray, and I will be placed on T4 and T3 since my thyroid function is also low.

I think that covers it without getting too long winded.

Things I'm wondering about: since I don't produce LH, what do you do about things like DHEA, pregnenolone, etc? It doesn't seem that they replace those things. I realize that DHEA is available as an OTC supplement, but it doesn't appear to be prescribed for patients with pituitary disorders.

This is all VERY new to me. I was diagnosed with panhypopituitarism on June 1, 2018, so I'm trying to learn as much as I can as fast as I can. I'd really appreciate any insight from anyone else who has this condition since it's been hard to find other people with panhypopituitarism.

 

[Deleted member 16042]

Man, I feel for you and wish you good luck. What a complicated set of things to sort out let alone actually treat.

How old are you and is this something that initially occurred randomly or acutely, or long term in onset?

Is it attributable solely to a random tumor or are there other genetic or hereditary associations?

Re: your question about DHEA, pregenelone etc, You are probably going to get very differing views about this from forum members. I'll just say this: If you look at the sex hormone pathways, it all starts with cholesterol, so if there is anything in your situation which effects cholesterol levels, that would need to be addressed. Then likewise every step down the chain.

It seems pretty well known that when you are on Testosterone replacement, and LH shuts down, pregnenelone and DHEA production is curtailed or at least reduced as well. So yeah, possible replacement with OTC pregnenelone and DHEA may be in order, and many on TRT are prescribed these as such. However, HCG is also commonly used for testicular comfort and to "backfill the pathways" meaning stimulate production of Pregnenelone and DHEA as well. Everyone is different in how they react to any/all of these treatments, and all three tend to push estradiol higher. So they are definite considerations in your case, but really need to be managed through trial and error dosage and blood testing to monitor in order to readjust as needed.

 

[ratbag]

I have the same problem except it was from a bad head injury (car accident) when I was 7 yrs old. So I went thru adolesence without enough hormones. My pit still produces some hormones but all of them at the very bottom of range. The only hormone that seems ok is my aldosterone. I take everything else including DHEA which I learned to be very calming and helped me get rid of anxiety. They figured this all out when I was 50. I had been suffering pretty badly since my early 40's.

My Doc says the reason I'm 3" shorter than my father and brother is because I didn't get enough GH and testosterone during my adolesence years (growing period) I'm on 30mg cortisol daily(15+10+5) I'm on T3 + T4, Testosterone and my MD currently has me taking Semorelin with GHRP-2. (This really helped my bad back) I'm on metformin for type 2 diabetes... I was considered pre-diabetic since I was very young.

I take Losartan for BP and also take 4.5mg LDN (Low dose naltrexone) I feel 10,000 % better than I used to yet hospital MD's think I'm a cowboy when they learn I'm on Testosterone and try to convince me I shouldn't be taking it. HCG works good for me and makes me feel better. Good luck, this is a good place to call home.

 

[MAV6]

Thanks Blackhawk,

I'm 34, and I'm not entirely sure how this all occurred. I had a TBI, and they ran an MRI to assess how much damage was done from the TBI. The doc walked in and said they found hemorrhaging in my brain and "something else." So, then I had another MRI with contrast, and it turned out to be a pituitary adenoma.

I am told that pituitary adenomas are idiopathic, so they have no idea what causes them. I don't think it's hereditary. My 64 year old father has testosterone levels that hover from 650-700 ng/dL and my brother is healthy as well.

I have very high cholesterol since developing this condition, so maybe I'm not converting cholesterol as a result of the hypopituitarism as well?

This is like drinking from the fire hose to me. I was under the impression that after my tumor was removed everything would go back to normal, but apparently not.....

 

[MAV6]

That's interesting ratbag because I had a TBI and that's how they found the tumor. I didn't even know it was there until I had an MRI for my TBI. So now I'm wondering which one caused my hypopituitarism, the TBI or the adenoma?

Does the Semorelin and GHRP-2 actually do much for you? I was told by my endo that my pituitary doesn't work, so using any kind of stimulation would be useless since my pituitary cannot produce hormones.

What does the LDN do for you though? A few people have mentioned that to me, and from what I was able to find about it, it looks like it helps with autoimmune disorders more than anything else.

 

[ratbag]

My MD wondered too whether peptides would work. I was already on TRT when they realised I was hypopit after they saw an MRI image of my early damaged skull. So they couldn't do the standard GH labs without taking me off TRT and I wasn't prepared to go backwards for anyone. Yes it did work and my IGF-1 is very good now. LDN also normalises the immune system which clearly is affected on hypopit persons. Yes I feel it's better on LDN than without. I can feel it. Don't take everyones word for things. HCG might just work for you. I found everyone was quick to say what and what wouldn't work but after many years I learned that most things worked and wish I hadn't put so much emphasis on what MD's were telling me. You need to discover a lot on your own to be sure.