Pituitary tumour update.

Hi all,

I'm still here!

I had the surgery to remove the large tumour on my pituitary. I am now 16 days post op and according to my surgeon, doing very well.

The tumour was benign as 99% of them are.

I have ACTH short test on Tues to see if my adrenals show any signs of working.

Also more bloods to see if any adjustment to hormone replacements are necessary. I know my body pretty well and I'm fairly sure T4 is still low.

I have a feeling also. that my adrenals are not functioning and fully expect to be put on either Hydrocortisone or remain on 5 - 7.5mg of pred for the rest of my life.

I am now fairly convinced that this tumour has been my problem all along and that PMR was a misdiagnosis. The concensus seems to be that it has been growing for 10 to 15 years.

Because of this I will probably now bow out of the group as my condition has little, or no relevance to the majority of members.

This group has taught me a great deal, and prompted me to learn so much more about my body, and to that end it has been invaluable.

I wish you all well on your relevant health journeys and hope you all get the outcomes and results you hope for.

Brian.

[CT-5012]

Hi Brian, so pleased to read your post and to wish you well for your continued recovery. Best Wishes.

[scats]

Nice to hear you sounding hopeful for the future. Wishing you all the best.

[DorsetLady PMRGCAuk volunteer]

Hi Brian,

Good luck with continued improvement.

[markbenjamin57]

Greetings Brian

It's always nice to hear a good news story here - even if not directly PMR / GCA related. Thanks for letting Us Lot know, even though you are saying goodbye to us.

Thank you for your kind wishes - and all the best to you too

MB

[Mary63]

Hi Brian,

Glad to hear you have come through the op with flying colours, and I wish you the best of luck for the future.

[Linda369]

Hi there Beekzyay, Well done. Nice to know you are doing well. Brain surgery is scary as I know only too well as my son had a pineal tumour. Malignant and inoperable. Radiation shrunk it. He was 18 when it happened, and is now 50. Take care and May you continue us to do well.

[SheffieldJane]

It is good to have an update from you Brian. I am glad your operation was successful. Of course you are more than welcome to stick with us. Your insights about Adrenal treatment will be invaluable.

Bless You!

[Maisie1958]

Hello Brian, so pleased to hear you are recovering well. Wishing you all the best for the future.

[PMRpro Ambassador]

Please don't bow out entirely until you find out how it is all working and have given us a summary of the process. I think you are only the second person I have come across where PMR probably wasn't but a pituitary tumour was. It isn't easy to find such info - knowing what to watch out for will be invaluable here.

All the very best - and so glad it has gone well thus far.

[Hidden in reply to PMRpro]

Ok PMRpro, that is fair comment. Ill keep you posted regarding progress and any further treatments. Ill try to collect and collate the stages and symptoms I have had over the past few years and put them into 1 single document for comparison with PMR.

It seems the problem with these autoimmune diseases is that there is no "one size fits all" symptoms or treatment.

In my case of pituitary adenoma, it can apparently cause either under and/or over production of various hormones at different stages of growth dependant on how it grows.

I was lucky, it was caught before affecting my eyesight too much, due to pressure on the optic nerve. I have minor periferal loss to ther right, in the left eye.

I sort of self diagnosed the problem due to the fact that I was reducing the steroids and the only symptom I seemed to be suffering was increased tiredness and fatigue so I went and had a thyroid function test. T4 was low but TSH was normal. This rang alarm bells so I went to see an endocrinologist, and the rest as they say is history.

That is a brief prècis of the diagnosis. I will however attempt to write out the whole story in the near future.

Brian.

[PMRpro Ambassador in reply to Hidden]

Thank you so much.

"It seems the problem with these autoimmune diseases is that there is no "one size fits all" symptoms or treatment."

Absolutely - but unfortunately too many doctors don't realise that and get fixated on putting us all into little boxes and when we don't fit, the poor ones say there can't be anything wrong!! When there patently obviously IS.

I always envisage a/i disease as a shop with a very long counter and shelves behind it stacked with symptoms. The assistants don't look at what they hand out, they just choose a goody-bag full and throw it at you. Sometimes they chuck things at you as you leave for the door and it may or may not land in your bag. The label you get depends on matching your symptoms to the doctor's check list - which isn't complete or is strictly divided into chapters, not all of which have been read...

[Gaijin in reply to PMRpro]

I wonder if there is anything published about mistaking pituitary dysfunction with PMR? (I can't think of the term-total brain fog today). Of course I'm just kidding myself when I believe I'm going to be taken seriously about this by my docs.

[PMRpro Ambassador in reply to Gaijin]

press.endocrine.org/doi/abs...

ncbi.nlm.nih.gov/pubmed/119...

There was some suggestion some years ago that adrenal dysfunction could underlie PMR - but it was pretty much dismissed after more study. But since I maintain there are at least 4 different varieties of PMR - maybe one of them is? Or it isn't obvious in the early stages - but long term management with pred finishes off the process.

[Gaijin in reply to PMRpro]

Thank you, your knowledge never ceases to amaze me..

Interesting about the 4 types of PMR... I must have missed this along the way..

[PMRpro Ambassador in reply to Gaijin]

My theory I emphasise though I do know some rheumies who agree it is not a single disorder! Which is why we are all so different...

[Gaijin in reply to PMRpro]

I understood that it was YOUR personal theory. I meant I may have missed your esaay on the subject along the way... hahaha..

[PMRpro Ambassador in reply to Gaijin]

[Hidden]

Good news for you Brian. As PMRpro says your further feedback really helps. ATB

[Grants148]

Best wishes Brian, thankyou for your kind words .l wish you a speedy recovery and hope that you will be OK now.

[Rugger]

Best wishes for your continued recovery to better health.

[Purplecrow]

Thanks for letting us know how you are doing. Positive outcomes make us all feel good!

🙏🏽

[Gaijin]

You were really lucky to have diagosed the adenoma before you had an adrenal crisis, most pituitary accidents go undiagnosed till they cause a life threatening crisis. Mine went unnoticed till I had a pituitary apoplexy. I was left with a very thin, flattened gland. According to the public health system protocol in Spain, all my hormones are at normal range for my age. I have a feeling, though, that those cut off points would be much higher and therefore elegible for hormone replacement (my HGH was zero) in the US or UK.

I sort of gave up fighting to get an MRI and more precise hormone level tests periodically. I was never paid any attention to when I felt so ill and asked if perhaps I had a hormone deficit of some sort, being that approx 85% of those having had pituitary surgery or accident will be deficient in some or all hormones. I think you start being deficient in the least vital, the last ones to go are the most vital. Reading your post has made me realize I too, could have been misdiagnosed.

My daughter who had a hysterectomy at 40, swears by Bio identical hormone therapy. They are beginning to offer it here in Spain but I can't afford it. Maybe it would be available to you.

I wish you the best of luck finding and maintaining a hormonal balance.