Pit tumour: update

[Loo44]

Hi guys, just an update. 9 months on from surgery, Im still struggling. 3 months ago put on daily growth hormone injections and thyroxine upped to 125 mcg. I've had about a handful of good hours so far, still mostly bed bound. Am seriously wanting to ask my endo for a trial of T3 to see if this helps. Hope you all well xx

[Clutter]

Hi Loo, sorry it's taking so long for you to feel well. Do you know what your thyroid results are? If your FT3 is low you will benefit from the addition of some T3 to T4.

[Loo44 in reply to Clutter]

Hi Clutter, nurse sending me blood test results this week, so will post then xx. How are you?

[Clutter in reply to Loo44]

Not too bad, thanks Loo. Stunning improvement on this time last year but had to reduce T3 in Sept as FT3 was very over range. Not sure whether this is why I'm not sleeping well and am tired.

[MULLIONAIRE]

Hi Loo, sorry you are still feeling so unwell. I have pituitary dysfunction and inject with growth hormone, plus take 100 mcg of thyroxine and 20 mcg of hydrocortisone.

It was taking the hydrocortisone from 2012 that has made all the difference to me, the change with the growth hormone is very subtle.

Years ago an endocrinologist added T3 to my medication regime which again sent me into atrial fibrillation (I had problems with the control of my blood pressure from 1987 until 2011, when it was found to be due to another hormone - aldosterone).

The problem is all the hormones need to be balanced out and would suggest you look at the Pituitary Foundation's website and consider ringing their nurse.

Education and an open mind are essential to getting help, good luck.

[Loo44 in reply to MULLIONAIRE]

Thanks Mullionaire. I am in regular contact with the wonderful endo nurse Alison at The Pituitary Foundation. She has been so very helpful. I'll try and get hold of her tomorrow. After having insulin stress tests done, I apparently make my own cortisone and have been off hydrocortisol for 5 months. It's so hard trying to balance all these hormones out. Did you put on weight with GH? I have! Xx

[MULLIONAIRE]

So glad to hear you are in contact with Alison. The Autumn 2013, issue 25 of the Pituitary Life magazine had a very good article "How each hormone replacement medication may affect other hormone levels." It covered Growth hormone and the thyroid, Growth hormone and corticosteroids, growth hormone and sex hormones, Corticosteroids and the thyroid, Thyroid hormone and sex hormones, Corticosteroids and sex steroids. Only shown the things for women, sorry to any guys. There was a very good chart shown as a summary of each replacement hormone given and the other hormones it affected and how.

No, I have not put on weight with growth hormone, but I do go to Slimming World. I took part in a study about growth hormone and distribution of fat and muscle, mine is completely up the creek. This is one of the problems when you have severe deficiency of growth hormone.

Have faith, sounds awful but it is only nine months since your op and three months on the treatment. When I attended the Pituitary Foundation conference last year there were several people who had tumours removed and they were able to lead normal lives, but the body has to have time to heal.

Just a thought, when you had the insulin stress test done did they pay attention to the time of day that you had it done? If it is not conducted correctly it can produce false results, cortisol is notoriously difficult to measure accurately.