Newly diagnosed

Newly diagnosed

Postby member_45399 » Wed Oct 02, 2019 11:09 pm

I just wanted to say hello here, having recently been diagnosed with hypopituitarism. The diagnosis process has been going on for 18+ months now but two ITTs have shown significant deficiencies in cortisol and growth hormone. I have been on hydrocortisone replacement for 6 or so weeks (10mg in AM and 10mg in afternoon) but seem to have a lot of side effects (weight gain, fluid retention, digestive upset ...) I am yet to start GH replacement but that is happening soon. My question is, how many of you with hypopituitarism are on hydrocortisone but not also thyroxine? I feel my side effect profile reflects enhanced corticosteroid effects and may reflect an underlying thyroid deficiency too. Previously blood tests show I’m just one or two points above the bottom of the normal range, but I’m certain I have many hypothyroid symptoms. My endocrinologist made an off hand comment that replacement of both cortisol and GH can sometimes ‘unmask’ a thyroid deficiency and we could maybe look at this in a few months.

Would be great to hear any other experiences of this early treatment phase. Particularly if anyone is having cortisol but not also thyroxine . Many thanks!
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Re: Newly diagnosed

Postby member_41389 » Thu Oct 03, 2019 7:54 pm

Hi
Welcome to the club. Although probably not one you were hoping to join.
Hypopituitarism is a complicated range of issues which can't be unravelled simultaneously since the endocrine system is so interconnected.
The general rule is that you sort out cortisol deficiencies first. You have only been on treatment for about 6 weeks and, after a long diagnostic process, it often takes 6 months or so to get stable again. It definitely is slowly slowly I'm afraid. You take 20mg a day that is pretty much the baseline which everyone gets put on initially and some need more or less and it's often hard to tell who is in which category. Typically this would be divided into 3 doses, 10mg on waking and then 5mg at 5hr intervals. some people find dividing further to 4 doses, 10, 5 and 2.5 + 2.5 mg at 4 hour intervals is better. Unfortunately that is trial and error as what suits me (4 doses) might well not suit you. The two doses a day routine was common until about 10 years ago but it's now seen as a bit old fashioned. This is because hydrocortisone doesn't last long in the blood, for most no more than 6 hours and usually nearer 4 to 5 hours.
The usual process following getting reasonably stable on the steroid is to try and sort out any thyroid issue. Note here that the usual test for Thyroid Stimulating Hormone (TSH) is not very useful for this but No GP and very few others know this. As the name says hypopituitarism means your pituitary doesn't work as usual. That means any or all of the pituitary hormones can be missing and TSH is one of them and so's growth hormone.
Then, when cortisol and thyroid are sorted, they turn to look at growth hormone. If you are deficient then are a series of hoops to be jumped though to get treament. These are defined by NICE guidelins and your GP or Consultant have very little control over this.
Finally the reason for this protracted process is simple; if you increase thyroxine you use more cortisol so you may need more hydrocortisone to compensate; if you increase growth hormone you may need more cortisol, it seems possible you might actually need less thyroxine! This is why everything takes so long and is done using baby steps.
Talk to the endocrine nurse helpline and general helpdesk at the Foundation they have experience to fall back on.
Take care of yourself
Tim (Acromegaly plus hypopituitarism)
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Re: Newly diagnosed

Postby member_45399 » Fri Oct 04, 2019 4:15 am

Hi Tim, thanks so much for your time in replying, I really appreciate hearing from you. You’ve given me more helpful information than my endocrinologist, who has made it all sound pretty simple (when from my reading I realise it’s anything but) I’ll ask about thyroid meds with your thoughts in mind. For some reason it’s cortisol replacement first for me and the GH next. Not sure why that is, I will ask next time. I’m in Australia and the requirements for GH supplementation are very stringent, as I’m sure they’re in the UK too, I’ve ‘failed’ the ITT at low enough levels to be eligible for subsidised GH which is great. I’ll also ask about the cortisol dosing, thanks so much for sharing your experiences with that. It’s an isolating condition and so helpful to know there are others out there. Thanks again for your time :-)
Best, Sandra
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Re: Newly diagnosed

Postby member_41389 » Fri Oct 04, 2019 7:56 pm

Hi Sandra
As you're based down south you may not be aware of some UK resources which might be helpful.
Firstly the Addison's Self Help Group (ADSHG) which publishes a lot of addrenal insufficiency information for free http://www.cahisus.co.uk/index.htm.
Second CAH is us (cahisus) which is nominally a pediatric adrenal insufficiency site but has some very informative stuff on dosing http://www.cahisus.co.uk/index.htm. I found their leaflet http://www.cahisus.co.uk/pdf/CIRCADIAN%20DOSING%20ADDISON'S.pdf
particularly informative.
Finally, I've found a reference to an Australian based help group https://addisons.org.au/ which may also be useful to you.
Keep talking to us, there's lots of knowledgeable and helpful people in the forum, the ADSHG is more active than this one for a variety of historical reasons.
Take good care of yourself
Tim
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Re: Newly diagnosed

Postby Carl » Tue Oct 08, 2019 11:53 am

Hi Sandra, I can only echo what Tim has said....it can be a slow and tricky process unravelling what hormones you need when the Pituitary isn't working correctly or at all. I was first diagnosed in 2013 when I had my Pituitary Tumour removed, I now take Hydrocortisone and Testosterone. When I was first diagnosed, my TSH was low as well as my Cortisol and Testosterone. In fact various markers in my blood were all over the place. Like you the focus was on getting my Hydrocortisone replacement sorted, it makes sense really because severe lack of Cortisol can kill you pretty quickly.

Once the HC replacement was ongoing and my tumour removed, I had regular bloods taken and all the other hormones stabilised except Testosterone because the signal sent out by the Pituitary was lost. But this process took from May 2013 right through the rest of the year to sort itself out. I still have regular blood tests to make sure everything is stable, as I'm sure you will too.

Also agree about the dosing, my dose is split into 3 rather than 2.....I really wouldn't fancy 2 doses a day. For me 3 a day generally works well, I've tried 4 doses and it didn't seem to make much difference. That said taking HC isn't a fixed thing, you need to stick to a constant overall dose and how you split it is up to you and how you feel. Up-dosing to cover illness (as per the sick day rules) is fine.

As for weight gain, this is something a lot of people on HC report, but it isn't an easy thing to solve. I've read stories from REALLY annoyed people who eat healthily and exercise but on HC still gain weight. It is a tough combination of trying to work out what is the correct dose, really careful dieting and also being careful not to overly cut back on the HC such that you end up getting ill. Trial and error again I'm afraid.

Cheers, Carl
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Re: Newly diagnosed

Postby member_45399 » Mon Oct 28, 2019 6:39 am

Hi Carl
Thanks very much for your thoughts! I really appreciate you taking the time to reply. I will definitely follow up with my endo about the multiply daily dosing of hydrocortisone. Since making my first post on this thread I have started growth hormone supplement and feel that the digestive side effects of the hydrocortisone are a bit less. But the weight just gets worse! Glad to hear I'm not the only one to experience this. I really hope I'm considered for thyroid meds when I have my next review.
Thanks again!
Best, Sandra
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Re: Newly diagnosed

Postby member_45399 » Mon Oct 28, 2019 7:00 am

Hi Tim
Thanks for your follow up reply and the links to the various Addison's groups - that's excellent information! The Pituitary Society here in Australia doesn't seem very active from a patient point of view but I will follow up with the Addison's society. I've been on growth hormone for three weeks now, not a huge amount of improvement but I think I'm a bit less exhausted and (not sure whether it's real of not) the side effects of the hydrocortisone seem less pronounced now. I have a follow up with my endo in a couple of weeks and really hope thyroid meds are considered then.
Thanks again :-) really appreciate the responses and best wishes. It seems so much less daunting knowing there are others who have navigated this!
Best, Sandra
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Re: Newly diagnosed

Postby Mgh » Mon Oct 28, 2019 6:57 pm

Hi Sandra, I was diagnosed in 2011. I started on hydrocortisone. Levothyroxine was added to the mix two months afterwards and Growth Hormone six months after that. We are told that our usual fT4 measurement should be in the top half of the range. Mine bounces around within the top half. fT3 is no longer routinely measured when we have an endocrinology review and there is much debate about this at present.
I have found that my best fit hydrocortisone replacement is 10, 5, 5, 2.5. So four doses a day. If I am having a very quiet day the third dose of the day can be 2.5. I have also found that the timing of the doses is very important. A 5 hour gap is too long. Four or four and half hour gap works for me. I firmly believe we all differ somewhat and we have to find the best fit for ourselves. Finding out as much as we can ourselves and keeping a diary of what we are doing and how we are can feeling helps us arrive at a better understanding of how to cope.
All the best. M
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