Hi Tom,

About 6 month after my surgery I also experienced hair loss for about 2-3 months. However, the hair loss only lasted a few months and now although my hair is thin, I haven't been losing anymore. It just stopped by itself.

No one could tell me what it was but they suspected that it may have had to do with my Thyroid because my level were low but still in the range. Maybe consider getting your thyroid checked?

Hi! I had significant hair loss after my surgery. I think it has slowed down and I can definitely see new hair growth but I don't think it will ever be the same again. I have been told that it was the drastic decrease in growth hormone after my surgery, but I have also been told that it was r/t my monthly injections? I have lab work every 3 months and all of my other levels are ok (thyroid, cortisol, etc). Whatever it is r/t, I started taking biotin almost 4 months ago to help with my hair re growth.

I havent had surgery doing the drug route..but wanted to say it happened to me..I lost alot of hair..It was scary and I guess something youre not forwarned on could happen..for myself my hair came back differently as in texture softer..I spoke to my hairdresser ..people haveing treatments can find this ..

About 6 months after surgery I noticed my hair starting to fall out, especially after shampooing. Asked my endo about it and he said that happens to post menopausal women - I'm sure it does but in my case, like you, I believe it was effect from surgery - like Eliza6 my hair is quite thin now but no longer falling out as it was.

I started Somatuline injections in October and my IGF-1 level is now in low normal range - what I noticed about a month ago is that I haven't had any hair growth on my arm pits and leg hair growth is very minimal. Could this be from med? Anyone else experiencing this?

Sorry, Tom - just reread your post and noticed you said your arm and leg hair is also disappearing. Are you on any meds?

Before my surgery I had a few comments (compliments) from family and close friends, (and even the women in the chair next to me! at the hair dresser) on how my hair looked. Fuller and darker. For the first 6 months after surgery I lost so much hair in shampooing, it became a ritual to "set it aside" so it wouldn't go down the drains. The first night I noticed that I had little under arm hair was scary. My pubic hair also thinned..a lot..(This might be a girl thing but it was so long and thick before surgery that I was trimming it and shaving my inner thighs) Anyway, two years post surgery I think my hair loss has "settled down".

Vitamin D deficiency can also cause hair loss. Maybe something worthwhile to check. And make sure that the endo checks a Free T4 as the TSH can be low in pituitary disorders and not accurately reflect the level of hypothyroidism. I had surgery 12 days ago so no hair loss yet but prior to my diagnosis in 2013 I was losing head hair, arm hair eyebrows and armpit and pubic hair. I was diagnosed with central hypothyroidism and the hair regrew after months on synthroid.
Kinda hoping it doesn't shed again!!

Good luck in your quest for diagnosis.

Thanks for all of the replies - it's reassuring to know that I'm not the only one.

I did just find this online;

http://www.endocrineweb.com/professional/other-endocrine-disorders/hair-loss-commonly-experienced-patients-following-acromegaly-

It suggest that this maybe more common that I thought.

I'm not on any medication so can only assume that it is either due to the sudden drop in GH or that perhaps in the years leading up to diagnoses the increased GH had made my hair thicker and that this is actually how I would have been had I not had a tumour?

I had a blood test to check hormone levels last week so hopefully that will confirm that all is OK.

Thanks for posting the link. I feel like hair loss is often downplayed as a minor problem but for those of us suffering with endocrine issues it is a very visual reminder that our bodies are under siege by forces that we have no control over. Any new symptoms often make me think -- "Now what?"

I guess learning to question and adapt goes with the territory.

Three months after my surgery, my hair started falling out. That was in June 2012. It is now very fine and the falling out has slowed a little. I had very thick, fast growing hair, before surgery. Hairdresser said my hair grew faster than any of her clients. Hmmm. I have to wear a little wiglet because the hair is so fine, it just kind of, floats in the air. Horrible plus with the facial changes, it has been very difficult, on top of all the other problems this condition has caused. Vitamin D was almost non-existent, but I got that under control. No hair on arms or legs but I don't miss that. No doctors have given me any help as to why or what I can do about it. I just want my hair to be presentable.It is bad enough that my facial features have been affected by the acro. I avoid going out anywhere which doesn't help with the depression. Has anyone heard of a way to treat this? Or if it is a particular hormone, which hormone and what can I take to get my hair back. I have had pain and several surgeries from the acro, so I feel crazy complaining about this but it has been stressful, not being able to feel good about myself. Has anyone heard of any treatments for hair loss that work for Acro. related issues? My surgery got "most" of the tumor, so does that mean the remaining tumor is still creating havoc. My IGF1 is down to middle of the acceptable range and I am on Cabergoline and Somatuline Injections.

LindaB3727 -- I took cabergoline for 14 month and it caused a lot of hair loss. I have regrown some hair including eyebrows after starting Synthroid. My free T4 was on the low end of normal.

This disease has a lot of consequences and it's easy to get down. I'm 52 and was not much of a crier -- the past 18 months I have cried more than in my entire life. Enough to fill a lake!!

Nioxin makes a product line that may help hair growth and there is Rogaine for Women.

AHA! Couldn't have come at a better time!! Thank you so much for posting the link Nd raising the question! I have been losing hair by the handfuls! Fortunately enough my father is part ape and I had lots to begin with. Still sad to lose it...sounds silly but it was one of the last things I had that this condition hadn't changed. It is definitely nice to know you are not alone. :)