Author Topic: Endochrine Society Clinical practice guidelines for people with hypopituitarism  (Read 487 times)

db570uk

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Hi Guys

Just saw the Endochrine society has published (Oct 2016) clinical practice guidelines for people suffering from hypopituitarism

Maybe useful for guys who are secondary hypogonadism.  Just hope we see this in all the UK hospitals. They are saying
to get people hormones measure properly by getting dosing correctly timed to mimic the bodys natural functioning closely.
This was retweeted by senior consultant from UCLH Stephanie Baldeweg so can only be a good thing. Just to also say I am seeing the local hospital in Jan 2017 to ask to get  tested for Adrenal Insufficiency. I couldn't get a sooner appointment unfortunately

http://endocrinenews.endocrine.org/society-issues-clinical-practice-guideline-hypopituitarism/


This bit in the above didnt really come as any surprise to me

All hypopituitarism patients should be instructed to obtain an emergency card, bracelet or necklace warning about the possibility of adrenal insufficiency. - See more at: http://endocrinenews.endocrine.org/society-issues-clinical-practice-guideline-hypopituitarism/#sthash.sph3ETiF.dpuf

Basically sounds like this could be a problem for people who have been diagnosed as hypopit (secondary hypogonadism) if
they are showing symptoms (dizziness, lighheadness etc).

I see UCLH in Feb 2017 so if no joy at the local hospital I will raise the point above to get my adrenals checked.
I already have a level of GH below my age range and I wouldn't be suprised if other hormones are on the low side.


Dave

James G

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Thanks for the info Dave.
If you have GH deficiency - and presumably they have done dynamic testing of this for you with an insulin stress test - (you lucky fella, I had this joyous experience too but with ok results) they must have tested your other pit hormones and your 9 am cortisol?  If you've had that and it was ok, I'd not bother with the adrenal insufficiency test as cortisol is the test they will do.
Unless anything else has changed of course or you are due bloods for your GH (IGF I think they measure).
My pit is slightly dodgy but not crook (yet?) and each time I am seen they do every pit hormone test again. Mind you that is only every year now.
Bw
JG

Ashto70

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Very useful info Dave.
Thanks very much.

Craig

db570uk

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Thanks Craig and James

I had the IGF1 test to measure GH about 3 years ago when I was diagnosed with secondary hypogonadism at the time of doing an MRI. Even though I was injected it was a one of so I think I didn't have the dynamic cortisol testing

James I was wondering when I pursue a dynamic testing of the ACTH/cortisol if I will feel faint/dizzy or feel sick
when they inject something to see if my body produces these hormones? Is this insulin?

I understand with dynamic testing they may keep me in and take blood every few hours. Was this what
you had to have done when you were tested?

I really would like to get to the bottom of it (lightheadedness) hence seeking the testing. I get it when I get up or go for a walk.
My local hospital isnt too great with these things but I am hoping they will do an initial blood test when I see
the consultant in January 2017. I feel things take a turn for the worse when I get stressed. I took my last exam in may
and the stress caused havoc (brain fog). Thankfully I composed myself and went on to pass it well.

Kind Regards
Dave

James G

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Hi Dave,
re dynamic adrenal testing - they do something called a short synacthen test - synacthen being a synthetic analogue of ACTH (adenocorticotropic hormone) hence syn-ACTH-en. The idea is to give you ACTH to stimulate your adrenals to produce cortisol. They take blood for cortisol as baseline and then give you an injection (IM or IV) of synacthen, and then measure your cortisol response at 30 and 60 minutes with 2 further bloods tests. The baseline cortisol should be above a certain value and you should make a response and have a cortisol at a higher figure if your adrenals are working ok. If it is equivocal, i.e. not giving a definite answer, there is a long synacthen test which requires blood tests at 1, 4, 8 and 24 hours after the synacthen injection.
That's the adrenals.
The dynamic test of GH (which I gather they do if your IGF-1 is low) is an insulin stress test, which I think is what you alluded to.
Baseline bloods for IGF-1 and glucose. IV line, and a drip of insulin in dextrose.The idea here is that the insulin makes you hypoglycaemic (low blood sugar) and the stress of that on the body stimulates the production of GH. It's a bit of a long winded test, as they have to keep ramping up the insulin drip and keep pricking your finger to check your sugar as they need to get the sugar level down to less than 2 or was it 1.8mmol/L, in any case a really low value. As it happens you end up hardly needing them to tell you when your sugar is low as you feel decidedly ropey. I don't think I have ever sweated quite so much without being hot, it just literally pours out of you, I came out looking like I had just had a sauna in my day clothes. You also feel really anxious and jittery, nervous, slightly confused. When the sugar is at the low level they take a proper blood sample for the IGF-1. If you produce the appropriate IGF-1 response to the stress test then your GH level and pituitary function there is ok.
As you may have realised the pituitary gland is really small and produces a myriad of different stimulating hormones GH being just one, but includes FSH and LH (which are of interest to us here in relation to testosterone) and so if one goes crook then there is the danger of it all folding like a pack of cards.
I have a pituitary gland that is teetering on the brink and have a condition that has the potential to poison the pituitary so they keep a blood test eye on my pit each year now i think. Hoping not to have the insulin stress test again however. It wasn't a bundle of laughs. Needless to say you do need to be in a hospital for the stress test just in case you slip into a hypoglycaemic coma, that is they do need to pump you full of sugar again if your sugar doesn't rise up again when the insulin is stopped. I was given a sugary drink and a Club choccy biscuit, and all was fine.
Your presumptive low Blood pressure - fainting feeling / dizziness - could be adrenal related as cortisol will tend to maintain your blood pressure. If its not working then they would need to give you a synthetic cortisol to maintain your blood pressure and you'd need a medi-alert bracelet or dog tag in case of emergencies, i.e. they would need to know that you need cortisol support to maintain your BP in an emergency situation.
Just in reply to your worry doubt the cortisol test - you shouldnt feel faint with that one as your cortisol will go up rather than down, or at least that is the aim.
HTH
BW
JG

db570uk

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Thanks James,

Really great helpful information and experience. This has given me a good idea of what to expect. Agreed I didnt think some of these tests would be a pleasant experience. But I do want to rule out the potential of adrenals being a problem.

As you mentioned once you are deficient or low in some of the hormones the others can be on the low side/deficient side. That is what I am worried about. I am sure UCLH endo team are not worried but I am symptomatic and really need to find what if anything is causing the lightheadness I get every day. Unfortunate that I have been seeing junior endo's for the last couple of visits.

It is very debilitating and I get fed up feeling like this. Dont feel great. Just hoping I don't need to go down the lengthy ACTH test but will be prepared to do it if they see anything that wrong in prior tests. I believe a lack or low levels of ACTH and CRH from pituitary/hypothalamus can cause symptoms

Do you get cravings for salty food/snacks. I can demolish bags and bags of salty snacks in one go and still crave more.

I had a CT scan done of my abdomen to check lymph nodes as been getting pain in my lower back and kidneys. I was thinking imaging could see if anything wrong with lymph nodes after TC 10 years ago, but also to see if anything wrong with adrenals glands. Luton and Dunstable Hospital  said they would be checking my liver also. Having to make an appt to get the result from my GP. I took this a fortnight ago. Fingers crossed all is okay.   Pain in the kidneys have subsided but back pain comes and goes.

I see the endo at Luton & Dunstable Hospital in Jan 2017 but don't feel too confident in him (Diabetes Specialist) as he was the one who said I should drink energy drinks when I had levels of 9/10 nmol T (didnt want to treat) and hence is why I went on my travels to find an Endo that could diagnose my low T (Ended up at UCLH eventually after seeing Royal Marsden who I did not know doesnt have an endo team).

Hopefully the endo will be receptive to running some tests to see if my pit hormones are a problem.

Sincere Thanks
Dave

« Last Edit: November 08, 2016, 05:41:53 PM by db570uk »

db570uk

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Update:

For any guys interested and experiencing lightheadedness with or without TRT/Clomid etc. I had my ACTH Stimulation test this morning to check if my lightheadedness that I have been living with since 2007 (after orchiectomy) is to do with cortisol or ACTH issues. I had always put it down to low T but other than gel everything else did not seem to alleviate this feeling.

I didn't feel any palpatations, or symptoms people who have the test sometimes have.
I didn't feel stressed at all. In fact I feel great. I wonder if the coritisol has risen to get me to normal levels.

I had a 9AM cortisol done 3 weeks ago and it was 199 on a scale of 400 I think. That was enough to get the local endochrinologist in Luton & Dunstable hospital to give me an ACTH Stimulation test (done today at 9AM). I had a baseline cortisol measured at 9AM and then injected with Synacthen ACTH steroid/hormone and then had blood drawn at 9:30 and then 10'o clock to see if my cortisol levels increased.  In some one who has normal adrenals the cortisol should double or triple at 9:30 or 10 am.
Those cortisol can still rise an 1.5 hrs after being injected.

I had been psyching myself up for the worst.

Anyone know what feeling normal in the test would mean? I still feel lightheaded and a bit unsteady on my feet.

I was told the result will be ready in about a weeks time, but my consultant had said it could take up to 8 weeks for him to inform me.

One thing I found out from the senior nurse there was that steroids such as hormone replacement etc can have an adverse affect on cortisol and can play havoc with adrenals causing them to get damaged / out of sync. Maybe something here for guys to watch out for especially if they have lightheadedness after trying different treatments. I have bene on and off of Clomid and HCG. My trial of both (which I was on (alternating) since seeing UCLH Andrology in March had to be put on hold for the ACTH Stim Test today as apparently androgen affects the result. Will start in Clomid back again today as I was last on HCG.  I see UCLH Andrology in 14th April 2017.

Really hoping they find something with my ACTH or Cortisol , secondary or primary adrenalism (Addisons Disease) as living like I am is likely to finish me off. Been feeling low of late. My new job is going down the pan. Been signed of from work with stress related problem for 2 weeks last week after experiencing burning sensation in my head.  Fish oil (Omega 3) has alleviated inflammation feeling after doing some youtubing.

I think I may have taken too much as the nurse said I bleeding a bit after they took the canulla out. I will stop the fish oil for a few days and maybe taken a lower strength one (1-2 times a week instead of daily)   

Dave

Ashto70

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Hi Dave

Very interesting. Sorry to hear you're feeling pretty low of late.
 
I have found that a need to eat much more regularly than I used to. If I don't eat every three hours I start to feel dizzy, confused, and irritable.
About two years ago I ran a course of corticosteroids and I felt brilliant for about two weeks. The feeling of energy and well-being was amazing!

I wouldn't rule our Addison's Disease, however it's highly unlikely. It's not only extremely rare, but it is also something that tends to rear its head
in someones earlier years. Very low deprived levels of cortisol can often leave a person totally incapacitated and usually hospitalised. Something I
don't think has happened to you thank God.

Ruling out Addison's doesn't mean ruling out low cortisol levels entirely though, and it's possible you may need some typed of supplementation. For
sure, if it is Addison's I reckon it will be days rather than weeks until you hear from your GP.

Let us know how it turns out bro.
All the best.

Craig


db570uk

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Thanks Craig,

I am secretly hoping the local endo will see me again to explain my results as he had written a letter to my GP that he had not seen a problem in a urine sample I had given 3 weeks before my ACTH Stimulation test but would still do the ACTH Stim test as he said I verbally told him I had got a 199 nmol/l (scale up to 400+) cortisol reading from UCLH which he said warranted investigation. Apparently they usually ask for a urine sample of the day of the stim test. The local endo said there was not a sodium problem in that sample I gave which I think would rule out Addisons. Unfortunately the nurse never asked me to give a urine sample on the day of the ACTH Stim test.

A lot of factors can lead to anomalies in the ACTH stim test, such as some endos dont ask for fasting before the test (i.e. my local endo) whereas others say there needs to be fasting before the stim test. I had fasted for it but the senior nurse insisted on me having a cup of coffee (with sugar) and 3 digestive biscuits  :) as it said on the appointment letter that I gave her that I did not need to fast.

Unfortunately I am hoping having the coffee and biscuits (containing salt) :) did not raise my cortisol to invalidate or skew the results (make them inaccurate). I had read caffeine and salt can raise cortisol. I cant believe I caved into having biscuits and coffee so easily after fasting especially to have this test. The nurse was forceful (gave me a stern stare when talking to me).

I had the short ACTH stim test where a smaller amount of ACTH hormone is injected compared to the one where they inject a greater amount of ACTH. Apparently the short ACTH stim test is more sensitive and more accurate for diagnosing primary adrenal insufficiency. I had asked the endo if he would be testing secondary adrenal insufficiency i.e low ACTH hormone in my pituitary but he said no.

I am really disappointed he did not do this. To do this they had to take ACTH reading the same time they took the baseline Cortisol. With the ACTH reading they can see if their is secondary adrenal insufficiency going on.

There are a number of rules which decide what is what with regards to diagnosis but unfortunately I don't think all the relevant blood markers were done. The table at the bottom of the link below kind of indicates what combination of markers lead to a particular diagnosis/disease state.

https://en.wikipedia.org/wiki/Adrenal_insufficiency

Agreed about Addison's usually affecting young people from what I have seen on youtube and on addisons forums.

I honestly cannot wait to find out my results.

When I last saw Dr Sri at UCLH Endochrinology (replacement for Dr Conway) he gave a blood test form to do a one off ACTH and Cortisol test (not ACTH Stim test btw) before my next UCLH endo appointment in August 2017, so have been thinking of getting that done before the local ACTH stim test results come out just in case I have to refer the local endo to the UCLH ACTH result.

I am feeling better in myself this week. I am signed off till mid week and have a couple of days leave but have to go back to work next week Monday. I have been given really hard work objectives (no training) and cracked under the strain over a week ago - feeling like I had a PTSD by the end of the working day, head hurting when trying to move its with lingering burning sensation getting worse as the day progressed. I had eaten at lunchtime. I felt like this for couple of days and glad I went to my GP who signed me off.
I dont feel in myself I handle stressful situations well unfortunately (and want to get to the root cause of the lightheadedness).
Hopefully the local endo will investigate things for me further.

Kind Regards
Dave




« Last Edit: April 03, 2017, 10:50:19 PM by db570uk »

db570uk

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Test results in from Luton and Dunstable Hospital

Testosterone    9.6 nmol/L  (8.6 - 29.0)
LH                   2.1    U/L    (1.7 - 8.6)
FSH                 4.2    U/L    (1.5 - 12.4)
SHBG              30  nmol/L  (15-55)


9 AM Baseline Cortisol   327 nmol/L  (after the coffee and biscuits)
9:30 Cortisol                 548 nmol/L
10:00 Cortisol               632 nmol/L

If the Cortisol has stayed under 550 (cut off point) then Adrenal Insufficiency would have been diagnosed


The doctor telephoned me to discuss the results. He didnt know about the coffee and biscuits
I was given before the test until I told him. Unfortunately from talking to him he had already worded up the letter to say I dont have any primary adrenal insufficiency and there wont be a retest as my results do not indicate primary adrenal insufficiency.

I explained my concern is the ACTH Stim test is not testing my own ability (my own pituitary ACTH hormones ) to stimulate my adrenal glands. The ACTH stim test is testing only if my adrenal glands are working from the injected ACTH, which I am glad to say they are.

I also told the local endo that my lightheadedness came back about 7 hours after the ACTH was injected

He said he would be writing to my GP but would stress to him and me that I should get UCLH to look into this as a longer ACTH stim test or insulin test would be required to be able to see if I have problems with secondary  adrenal insufficiency as they dont have the ability to do these tests at Luton and Dunstable hospital.

Unfortunately the NHS process is to confirm if there is adrenal insufficiency by artificial stimulation of the adrenal glands by ACTH to get cortisol levels up but below 550 nmol/l. It is only when cortisol is below 550 nmol will they then check pituitary ACTH to see what the of type of insufficiency is i.e Low pituitary ACTH (secondary adrenal insufficiency) or high pituitary ACTH indicating (primary adrenal insufficiency).

Hence if the stimulated cortisol level is above 550 they wont check your pituitary ACTH  :'( 

My local endo said I should use the letter he sends me to show Dr Sri at UCLH for him to investigate further. He said he would be adding a few lines in the letter to support me in this quest (hoping this is the case).

I don't see Dr Sri until November 2017 so a very long wait. In the meantime back into the firing line (work) next week.  I will now take the UCLH ACTH and Cortisol blood test to get ACTH indication and will go to UCLH tommorow to get this done first thing.  :)

Kind Regards
Dave
« Last Edit: April 05, 2017, 06:02:41 PM by db570uk »