Our very own category!

[loubee]

Hi all

So glad to find that those of us with n/f adenomas now have our very own category!! Never used to know where to put my posts. Non Functioning Macro confirmed Oct 2007(prolactin levels not high enough to be a prolactinoma), on watch and wait, but also taking Dostinex which has actually shrunk it (gone from 2.9cm to 1.8cm over the last year) woop!
Now discharged from neurosurgeon coz of shrinkage and just keep on popping the tablets!.....would love to hear from anyone in the same boat as me.

Loubee x

[missmagpie]

Hi guys!

I had for a few years a non-functioning adenoma. Prolactin levels were not high enough for it to be a prolactinoma and Dostinex lowered them into the normal range. IGF-1 values were perfect for my age... but GH values were high (20 ng/ml) with no signs of acromegaly or excess of prolactin. I was therefore diagnosed with a non-functioning adenoma.

A few years later, I started developing symptoms of excess of prolactin and my IGF-1 values rose to too high, so I was diagnosed with acromegaly and had surgery to have the tumour removed. Has anybody had the same experience? from non-functioning to functioning? has anyone had high GH and normal IGF-1 for years? do all non-functioning adenomas stay quiet?

Thank you very much!!!
Miss Magpie

[pinhey]

Hi
I read an article written by professor ashley grossman saying that some cases of acromegaly will slip through the net because in some people with undiagnosed or poorly controlled diabetes can show a normal igf 1 level even though the gh levels are high,the more you read about this illness the more confusing it gets dosn't it. your post just caught my eye because on your blog I'm sure you mentioned something about insulin resistance.

[missmagpie]

Yes, i wrote about insulin resistance on my blog. Glad you read it!!!

It's very interesting what you write. My endo diagnosed a mild insulin resistance and blamed the acromegaly for it. After having the adenoma removed I had a cortisol test (don't really know what for, but something related to the insulin resistance). Apparently I did excellent in that test and the final diagnosis of my endo was a very, very mild insulin resistance I shouldn't worry about as long as I stay thin (so: no problem).

Reasons for the insulin resistance remain unclear to me, at first she (the endo) blamed the acromegaly but now she says it's caused by my slightly polycystic ovaries. Anyway, she never mentioned the insuline resistance as cause for having normal IGF-1 and as far as I know, I "got" it AFTER* having the adenoma removed, and didn't have it before.

*may be it started developing shortly before the surgery, but not 6 years before (when I had high GH and normal IGF-1). For sure.

As you point out, it's a mistery. The more I know about the condition, the less I understand it. When and why did the adenoma decide to be active?

Cheers
Miss Magpie

[Ginger]

Hello everyone

I'm confused. I had an MRI a couple of months ago. The test was inconclusive, I think. On one view of the film, the doctor measured a 4mm adenoma. On other views he couldn't see it so he said I'm PROBABLY fine, maybe, maybe not. I have secondary adrenal insufficiency with low ACTH and very low IGF-1, hypoT. etc. Any opinions on the MRI? I was pretty upset to spend that kind of money for a diagnosis of, "I don't know".

[Brenda]

Hello everyone

I was diagnosed with a non-functioning pituitary tumour on 2 January this year and had trans-sphenoidal surgery on 29 January at Newcastle General. My neuro-surgeon thought the tumour was a meningioma but pathology later gave the diagnosis of an adenoma. Subsequent MRI has showed that there is some residual tumour but my Endocrinologist doesn't think I need any radiation treatment or another operation and will scan me again in a year's time to see if there is any change. I was steroid deficient before the operation and was picked up by the Endocrinologist who started me on hydrocortisone but about six weeks after the op my levels were in the normal range. So at the moment I am not on any medication and all's looking good. I asked my Endocrinologist about the chances of the tumour starting to become functioning, but she said she was 99% sure this wouldn't happen and, in her words, "we won't be caught napping" if there's a future probloem.

[alex fleming]

Hi Guys,

I'm in this section due to my type of pituitary tumour, non functioning macroadenoma. The onset for me for medical intervention was sudden blurring in the left eye, last march (2009). The eye doctor sent me for an MRI as he couldn't see anything in the front or middle of the eye and suspected something at the back of the eye (inflamation or infection). The MRI showed a large tumour elevating the optic chiasm and expanding into the cavernous sinuses to the sides. My blood results all showed up to be in the normal range with a slight elevation of prolactin. After surgery in December (2009) usuing the fully endoscopic endonasal transsphenoidal technique to ressect the tumour (which I would recommend if surgery is required) I'm back at work with all my blood levels still in the normal range. The pathology report on the tumour was diagnosed as a 'silent gonadatropin' adenoma. This would explain the loss of libido and sex drive over the last 4 years ( I was putting this down to other medication I'm on), I'm now on testosterone injections every month to help with this and so far everything is starting to work in this department again. The headaches which I had too (but blamed on other things) are gone, which is great wakening up without a sinus like headache behind the eyes. My vision is still not back to normal yet ( if at all ) and I see the Endo next month for a check up with bloods and another MRI in April to see if the surgeon has managed to remove all the tumour. If this is similar symptoms to anyone else then I would be interested in chatting to see how you got on or if I can be of any help to someone facing surgery for this type of tumour.

Alex

[alex fleming]

Hi Guys,

Sorry for not being on sooner but I'm not really a computer surfer.

My update is as follows, the neurosurgeon put my MRI off til June as he wanted 6 months to pass as the packing he used during surgery may show up as tumour, so watch this space for an update.

My Endo, and neuro opthalmologist appointments are made for after the MRI so they can all see what stage I am at.

I had to go to the ENT surgeon to have my nose looked at to see why I still had a blocked nose feeling up the left nostril ( the side the neurosurgeon went through) and was told the reason for the blocked feeling was a perforated septum!!

I remember the neurosurgeon mentioning that I had bad bleeding during surgery from the nose and he had to cauterize the sides to stop it. Obviously this has led to the tissue dying and the perforation starting.

Has anyone else had any bother with the nose after surgery?

Other than that Im fine and busy working away.

Ive not managed to read up on what everyone else has been up too, but I hope you are all keeping well and staying positive.

Alex

[Paul Clarke]

Welcome back Alex.

Glad to hear you are feeling better and back working.

Looking forward to getting updates,

Regards,

Paul