Can anyone advise please.

Can anyone advise please.

Postby member_41907 » Sun Sep 13, 2015 8:15 am

Hello. Hope you are all as well as can be. I was recently diagnosed with hypopituitarism and hypoadrenalism. I've been started on hydrocortisone. My life has already in proved drastically. I'm a (youngish) mum to 2 beautiful young girls. I've been very poorly since having my 2nd daughter. My endo is dr partha kar. Who I ended up having to see privately. I had an insulin tolerance test. Which diagnosed the hypoadrenalism. But my concern is my growth hormone. So in thr ITT the highest it got to was 2 and very quickly dropped to 0.08. Even under stress. Have slightly raised igf-1 levels. So he is checking there isn't a tumour. But says it can be high due to infection. (I've had an abscess under a tooth for 18 month. Which until I was diagnosed. My dentist wouldn't treat through fear of me having a crisis in his surgery!)

Anyway. The endo says adults don't need groeth hormones. And not to worry about it. Whilst I do feel significantly better. I'm not bed ridden anymore...I've still got many symptoms....I feel really isolated. I worry about being social. But due to worrying people think I'm drunk. Or some such like. Just because i can be so unwell because I got so poorly and so out of it. My memory is shocking. .to the point that it frightens my family. I lose things about 100 times a day....keys..purse...tickets. I tick 21 out of that questionnaire.

Do we need growth hormone?? What can I do if he seems set on this. It's been such a huge huge huge struggle to get to this point in my life. I feel like I'm never ever going to feel normal again and that I'm eternally grateful to of got to this point.....I hope I'm making sense.

Many thanks for reading
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Re: Can anyone advise please.

Postby Carl » Mon Sep 14, 2015 7:48 am

Hi there, I have hypopituitarism and I am on 20mg of Hydrocortisone per day. I don't take growth hormone either, but then I haven't got Hypoadrenalism.

As it happens my Endo is also Partha Kar and I can tell you, you are in good hands. He is a fabulous doctor and he has seen me through diagnosis to my tumour removal and several follow up visits since 2013. The best thing is he has said to me and I think all of his patients, don't hesitate to drop him an email if you want to chat something through. When I came out of hospital, I had emailed him a few times and he fitted me in for a 10 minute appointment to talk stuff through in between clinics and other appointments.

Even with a relatively simple outcome like mine, where after my tumour removal I just needed Hydro and Testosterone replacement, it took about 6 months for these to settle in and for me to start feeling 'normal' again. I didn't want it to take that long, but it did.

It might be worthwhile having a chat to the Pituitary org's Endocrine nurse helpline as well (about the Growth Hormone), see details here http://www.pituitary.org.uk/support-for ... -helpline/

I hope you start feeling better soon! Regards, Carl.
Carl
 
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Location: Near Southampton, UK

Re: Can anyone advise please.

Postby member_41907 » Tue Sep 15, 2015 6:48 am

ello Carl.

Thank you so much for your reply. I'm so glad about what you've said about dr Kar. I had heard fab things about him. I had previously spoken with professor hindmarsh who had also recommended him.

I just assumed it's hypoadrenalism due to the fact I don't produce acth or cortisol. And will now be steroid dependent I feel.

I had the ITT test. Dr kar said when a normal person has it. They stress the body. And when plotted into a graph. The line spots up. Then slowly comes down. Whereas mine stayed pretty flat. I do have a high igf-1 level though. But I've had an abscess under my tooth for 18 months. So wonder if that's what's doing it. Where abouts are you Carl? I'm near Southampton
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Re: Can anyone advise please.

Postby Carl » Tue Sep 15, 2015 2:01 pm

I live in the west part of Fareham, so bang in between Soton and Pompey. I am under Dr. Kar at Pompey QA Hospital, but had my neurosurgery to remove the tumour at the Wessex Neuro centre in Soton General.

I never had to have the ITT test, we did discuss it initially, but my levels recovered sufficiently that I didn't need it. I did have a short synacthen test, which showed that although I do make some Cortisol, I didn't make anywhere near enough....hence the Hydrocortisone tablets. Because my Pituitary gland was irreparably damaged by the tumour, even though it has been removed, I don't make ACTH which is the message from the Pituitary to the adrenal glands to make Cortisol. But my adrenals are perfectly healthy, so I still make the mineralocorticoid hormones I need, so don't need to take Fludrocortisone. If your adrenals aren't working properly or at all, I assume that Addison's Disease has been ruled out?

I don't know if you are into Twitter, but Dr. Kar is very active on there as @parthaskar, a very vocal defender of our NHS.
Carl
 
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Location: Near Southampton, UK

Re: Can anyone advise please.

Postby member_41907 » Wed Sep 16, 2015 6:22 am

No. Mine isn't addisons. Mine is secondary from the pituatry. Not sure why yet. I suspected it for about 18 months after having my 2nd child. I've since changed gp. But my previous gp just kept telling me I had post natal depression. They refused to refer me. Even with some out of hours drs asking and low cortisol results. Which lengthened out the process spmewhat. But after all the mental health assessments they made me have. I know that I 100% do not have depression!!! Which is always a bonus
After my eldest I had 4 blood clots and infarctions with 14 days of her birth. It's been suggested that it's either blood supply issues. Infarction. Tumour. Or sheehans...or we might never find out. Which I'm ok with. I just wanted to initial diagnosis of feeling human. I have 2 young children and just felt so unwell. I do feel significantly better. But I guess it's a learning journey. .
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Re: Can anyone advise please.

Postby steve » Thu Sep 17, 2015 8:28 am

If an endocrinologist said to me that "adults don't need growth hormone" I would immediately start looking for a new endo. This is not just based on my personal experience - my pituitary stopped producing growth hormone following an assault and after being prescribed GH my health has improved dramatically. It is currently generally accepted that adults do need growth hormone, and not just for quality of life issues but also mortality levels
Regards, Steve
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