Have diagnosis oh Hypopituitarism. with acth low cortisol) ,hasi thryoid and abnormal low growth hormone

[rossilin600]

has anyone else on this forum been diagnosed with this, have had mri scan which show empty sella in piturity may have been caused by Sheehans syndrome 29 years ago when had massive heamorraghing after birth of my son, was diagnosed hypothyroid shortly after this birth but has had ongoing probs with health for years and seroius depression at times in my life, my father also had bi-polar, gioter, pituitry tumour and acromegaly, talk about poor treatment but have found that gps have virtually no knowledge of symtons and has been fobbing me off for years with its stress and depression and menopuase, etc etc

[helvella Administrator]

I don't remember anyone else posting they have empty sella - but you might get some help here:

pituitary.org.uk/informatio...

All the best

Rod

[headinjuryhypo]

There's an american forum with a discussion mdjunction.com/forums/hypop... - lots of people there were diagnosed after many years like you, you might get some helpful advice. I am so glad you have a correct diagnosis now after all this time. Joanna

[rossilin600 in reply to headinjuryhypo]

Thankyou for this info joanna, I just wish I could swap stories with someone but nobody out there seem to have this diagnosis, just feeling a bit isolated and scared.

[headinjuryhypo]

I'm so sorry you feel isolated and scared, and hope you get some help soon. The MD Junction forum is full of personal stories and if you tell yours I'm sure you'll get some feedback, but of course I know it would be much more comfort to actually meet someone. Really, though it may not feel like that at the moment, you're better off now than you were in all those long years when they were fobbing you off with incorrect diagnoses. At least the treatment should help. Joanna xx

[rossilin600]

Thanks for the link its good to have this contact, I appreciate you replying

[Pris2112]

I was also diagnosed with partial empty sella after my son was born. I am also hypothyroid diagnosed at 36. I have been feeling terrible. I just turned 53 yesterday and started suffering with tinnitus. It is absolutely horrible! My tsh is 0.077. I am on Levothyroxin .88mcg.

[rossilin600 in reply to Pris2112]

Have you asked for pituitary testing with an endo? Push for a atch test.

[Pris2112 in reply to rossilin600]

They did an MRI that was how I was diagnosed. I will ask for that test. I just found a new endo. I had lossed faith in doctors. But, I need help. Thank you for your reply. Years ago I was on growth hormone injections. I was much younger then. It did seem to help.

[Km27 in reply to rossilin600]

Hi there not sure if you are still on this site. I have recently been diagnosed with hypopituitarism. I don't have a tumour and my MRI was normal, however I have almost no growth hormone and low baseline cortisol levels so I inject growth hormone every night and take hydrocortisone 10mg every morning. I feel worse now than ever!!! I wake up feeling like I haven't been to sleep and if I am not at work (part time) I hardly move out of the house! I did however go away to stay with friend in France and ended up in hospital with suspected lym disease???? Anyway had my first bloods with the endocrine nurse on Friday and she recommended I upped my cortisone tablets to 30mg for that day and 20mg today and tomorrow. Yesterday I felt great on the 30 and today I have slept for 3 hours on the 20! Please share any happy stories/results you have as at the moment I feel like it's never going to get better and life as I knew it is over!!!

[rossilin600 in reply to Km27]

Hi. I have been diagnosed 6 years now and feel better on all the meds than without but for me life is far from it was before having hypopit I am sorry not be able to give you better news but for me I have had to adapt my life to my illness and still have many struggles. Please don't lose hope as it is different for many people due to age other illness and other loss of hormones. I take 25 to 30 mg hydrocortisone, 50 mg levothyroxine and 20mg T3, clonidine for overheating, gabapentin and Adcal for bones plus selenium magnesium and zinc. I am now 60 and can no longer work for due to chronic fatigue and pain in joints but hey ho I am still here and have still some quality of life. You may have to adapt your life accordingly but so do many with chronic illness and there are many people coping with a lot worse so please do try to stay positive and never give up. Take care x

[Km27]

Thank you so much for your reply! I haven't spoke to anyone else who has growth hormone deficiency. It is really early days so all very new to me and still waiting for more results and tests like the dexa scan and the endocrine nurse has ordered a cortisol test where they take bloods through the day? Bit like the insulin stress test I suppose?. You mentioned overheating, when I was away I was so uncomfortable as I sweated a lot from my face!! Not that attractive lol! But as you say there are a lot of people worse off and at least I feel I am getting looked after now (I am under kings college hospital) thank you again!! I will post again once I know more x and I wish you well x

[rossilin600 in reply to Km27]

I did forget to mention that could be of some importance that I do constantly struggle with firstly anaemia, after 3 years on iron tablets and couldn't tolerate these my iron stores are always low the consultant now gives me regular iron infusions. Please do get them to check your iron stores routinely as it seem to be a issue with being hypopit. Please keep in touch.

[helvella Administrator in reply to rossilin600]

Have you tried haem (also heme) and/or ferritin tablets?

They are reported to have much less impact on the gut. The iron content is in a chemically different form and humans have entirely separate mechanisms for absorbing these to the usual "mineral" iron compounds.

They are relatively expensive and not so readily available. iHerb have some but am sure others do as well.

[rossilin600 in reply to helvella]

Yes they tried all available iron supplements but to no avail it may because I have IBS as well and many gut intolerance so iron just was not rising, bear in mind things like spatone which is gentler on stomach which I discussed with endo he calculated it would take over a year to get even into the lowest bracket as just not enough in it to work for someone with very low iron.

[helvella Administrator in reply to rossilin600]

I am not sure you have fully understood what I was trying to say - these are not normal iron supplements like spatone (yes, too weak to be of much use), ferrous sulfate, bisglycinate or whatever.

For example:

storkz.com/proferrines-prof...

(May not come up in UK money! About £32.)

[rossilin600 in reply to helvella]

Ok Thanks for the info but as in UK and endo is doing my iron infusions on NHS these will not cost me anything.

[helvella Administrator in reply to rossilin600]

Don't count on continuing to get them. They cost quite a lot and we have seen what happens to expensive treatments when we look at liothyronine.

[Km27 in reply to rossilin600]

Thank you! Any information is really appreciated! I am speaking to the endocrine nurse on Monday so will ask her about that, I did have bloods taken Friday so maybe iron levels where one of the tests? I am in a way pleased that I have been diagnosed as I thought I was going mad! I am 48 but have not been right for years, stopped socialising, no get up and go etc! I thought it was depression. The reason I got looked at is because my cholesterol is through the roof and they sent me to a specialist who took blood samples and sent me to an endocrinologist! It is all so new to me, so to be able to talk to someone else is so nice! Thank you! X