Living with a damaged anterior pituitary gland

Living with a damaged anterior pituitary gland

Postby member_42176 » Mon Jun 06, 2016 10:47 am

Hi

I am looking to make contact with anyone who is living with a damaged anterior pituitary gland.

I had immunotherapy (ipilimumab) last year for melanoma. Good news - it shrank my tumours. Bad news I got Ipilimumab-induced autoimmune hypophysitis and the damage to my anterior pituitary looks like it is permanent.

I take prednisolone (8 mg) and levothyroxine (75 mcg) daily. I know the 8 mg prednisolone is more than the usual physiological replacement dose but on 7.5 mg I struggled to drag myself through my daily life. On 8 mg I just about get by.

My capacity to deal with stress has vanished. I want it back. Could my lack of resilience be to do with my damaged anterior pituitary gland and the crude nature of cortisol replacement or should I be looking elsewhere? I confess there are many other places to look!

Any relevant information would be gratefully received.

Regards

Moira
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Re: Living with a damaged anterior pituitary gland

Postby Pat » Mon Jun 06, 2016 1:05 pm

Hi Moira

The alternatives are 1) hydrocortisone which can be taken in doses several times a day and 2) Plenadren which is taken once daily.
Have your other anterior pituitary hormones been checked such as growth hormone and oestrogen?
Worth also having thyroxin dose monitored in case this isn't sufficient.

Alison, our endocrine nurse is very helpful and is on her line this evening 6pm to 9pm and Thursdays 9am to 1pm - 0117 370 1317
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Re: Living with a damaged anterior pituitary gland

Postby member_42176 » Mon Jun 06, 2016 2:24 pm

Thank you so much for replying so quickly.

Yes, I had contact with Alison a while ago, she was great. I may ring her.

Are you saying that my ability to cope with stress is probably/ likely because of my anterior pituitary problem? Do lots of people with anterior pituitary problems have this symptom?

Is there a really good chance that moving to hydrocortisone or Plenaden (which is slow release) will improve things?

It took months to settle on 8 mg prednisolone. There was a lot of pressure to decrease the dose, including splitting it. When I tried to tell the endocrine nurses I felt crap they would tell me that I needed more time to get used to the lower dose. I tried 7.5 mg split 5 mg and 2.5 mg for five weeks, feeling crap every day, before I took unilateral action and started taking 7.5 mg in the morning as a single dose. Then I moved up to 8 mg and felt much better. Now I feel OK unless I encounter stress.

Taking hydrocortisone at multiple points during the day sounds like it would dominate my life. I would have to believe that it had a reasonable chance of working to go that way.

Yes, thyroxine levels are tested regularly.

I am 56. This finished my menopause off and no one has mentioned testing for any reproductive hormones.

They won't consider growth hormone because I have cancer.

I confess I am not at my best during my 3 monthly ten-minute consultation with my consultant. I have a morbid phobia of doctors and hospitals, so I am most interested in getting out the door without having a panic attack.
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Re: Living with a damaged anterior pituitary gland

Postby Carl » Mon Jun 06, 2016 7:19 pm

I agree it would be worthwhile ringing Alison to talk through the options re Hydrocortisone and prednisolone. I am a member of both this forum and the Addison's group forum, the following is an extract from a post from someone else taking high dose Pred'

"Others, who only have experience of small-moderate prednisolone doses as part of their replacement regime, generally seem to have a more positive view of it.We have a few people who tell us they feel better on prednisolone at replacement doses than they did on hydrocortisone, so it seems to be horses for courses. Prednisolone is now thought to be roughly 6 - 8 times stronger than hydrocortisone for replacement purposes, because of its longer half life, so that for a petite woman, just 3 - 4mg prednisolone is probably all they need in 24 hours. Even Nathan Gafuik, Olympic level gymnast, doesn't take more than 7.5mg prednislone for a full day's training."

So taking that post at face value (I value the opinion of Katherine who posted it) 8mg does seem a high dose.
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Re: Living with a damaged anterior pituitary gland

Postby member_42176 » Mon Jun 06, 2016 9:29 pm

No, 8mg prednisolone is fine. We (myself and my consultant) have spent a year getting to this point and I weigh 138 kg (21 stone), so I am not petite! I spent months trying to get down lower and I felt crap and had no energy. In the end, we have settled on me needing more than most people.

There is no free cortisol in my system at the end of the 24 hour cycle.

I have corresponded again with Alison today by email. She was very helpful. Her opinion is that my inability to cope with day-to-day stress is nothing to do with my pituitary gland problem. Probably not worth trying a different drug given how long it took to get this one right!

Oh well, I will keep looking! Lots of other possibilities.
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Re: Living with a damaged anterior pituitary gland

Postby member_42176 » Mon Jun 06, 2016 9:46 pm

I would still appreciate being in contact with anyone who has been treated with 'ipi' and now has a damaged anterior pituitary gland. The immunotherapy activated a subset of my T cell in the hope they would attack the melanoma cells, which they did, but they also attacked my anterior pituitary gland and my gut has never been the same since.
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Re: Living with a damaged anterior pituitary gland

Postby Carl » Tue Jun 07, 2016 7:24 am

ah well, whatever the cause I hope you get to the bottom of it soon, it is bad enough feeling crap along with having cancer as well. Hope someone with some ipi experience can help soon :)
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Re: Living with a damaged anterior pituitary gland

Postby member_42176 » Tue Jun 07, 2016 8:21 am

Thank you!
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Re: Living with a damaged anterior pituitary gland

Postby member_44338 » Thu Feb 22, 2018 4:07 am

Hi Moira:

I too am living with a damaged anterior pituitary. It is very challenging, to say the least. I suffered from constant fatigue, swelling of the feet, postural hypotension and difficulty breathing. My pituitary was damaged in a fall. I am better now since Pat advised me that my hormone therapy dosage was most likely too high, and I subsequently reduced the dose. I sought professional help for my stress level, which was very high. I still remain challenged with stress. I am 65 years old. I send you my best wishes.
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Re: Living with a damaged anterior pituitary gland

Postby RB10 » Wed Sep 12, 2018 2:42 am

Hi Moira,
I just joined the forum and saw your post.
My dad has a damaged anterior pituitary gland from a tumour removed 25 years ago. It is very hard for him to manage stress! You are not alone.
He takes 25mg cortisol and 75mcg T4 with 25mcg T3. His thyroid labs and his symptoms show that he's hypothyroid. We think his cortisol is okay, but he does get awful headaches for a few days when he's stressed. I'm not sure if it's enough; it's hard to tell with him being low in thyroid also.
If he has a busy day (not busy like a normal person, just even one event or thing to do), it takes him days to recover, because he's so tired.
How are you doing?
RB (for PJB)
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