Has anyone had a pituitary gland tumour?

[Iona467]

Hi everyone

I have a pituitary gland growth, found by accident after a back and neck MRI.

My diabetes clinic had already told me I had a serious hormone problem, I put on 10kg in one month.

Does anyone have any experience of this?

Regards

Iona

[cjrsquared]

I haven’t had this but my mother in law did. The pituitary is the master endocrine gland and sends out messages to many other glands around the body. The anterior pituitary produces hormones that interact with the thyroid, adrenals plus female reproductive system and the posterior with the kidneys and oxytocin. So depending on where in the pituitary your tumour is depends on which organs are effected. My mother in law was on levothyroxine, hydrocortisone, anti diuretic hormone and growth hormone. It is really important that your diabetes specialist refers you to an experienced endocrinologist who deals with pituitary dysfunction. This may mean travelling to a tertiary centre some distance from home. I also hope they are investigating more into what type of tumour it is. I believe most pituitary tumours are benign but you need to know. Good luck.

[Iona467 in reply to cjrsquared]

Thank you so much, it’s what I thought.

Incredibly, my GP hadn’t even added it to the system and tried to say it wasn’t positively recognized!

I responded - by MRI, already had two telephone consultations with an endocrinologist. How is this ‘made up’?

I am in France now and just applied for my carte vitale.

Stage 4 cancer last year, lost a kidney. GP wouldn’t sent me to see a specialist after emergencies into hospital and very serious kidney problems for 10 years, started by my Lupus.

[bantam12]

My husband had a pit tumour, surgery wasn't an option so he was on Cabergoline tabs to control hormone levels. A neighbour had surgery for her pit tumour but it left her with other health problems.

[Iona467 in reply to bantam12]

Thanks for the update. It’s scary as U am I’ll with everything, cancer, Lupus, Fibro, serious back and neck problems.

Last year an operation to remove growths in my womb went wrong, surgeon cut into my bladder, emergency reversed colostomy, almost died after 3 days then they found stage 4 cancer. Still, trying to be positive.

[Rosebud1955 in reply to Iona467]

Sorry to hear that you’ve been through so much! Stay strong, I hope this pituitary tumour will be benign. Most pituitary tumours are benign. I wish you all the best.

[Iona467 in reply to Rosebud1955]

Thank you. X

[humanbean]

I think Hidden has had a pituitary tumour. Hopefully she'll see she's been tagged and respond.

[Hidden]

Hi, I've had a pituitary tumour that was producing too much ACTH which is the hormone that stimulates the adrenal glands to produce cortisol, this is known as Cushing's disease. As you've put on weight quickly it sounds like this may be your problem too. You do meed to see an Endocrinologist who specialises in pituitary/adrenal issues as not al of them do. It can be a long process to diagnose what is going on. You will need an early morning blood test to see what your cortisol levels are, cortisol is at it's highest point first thing in the morning & then drops through the day. They should do 2 or 3 24 hour urine tests & a Dexamethasone suppression test. They will need to get all the biochemical evidence to prove where the issue is before they proceed to surgery. It's not a quick process & can take a long time to get fully tested & then recover following surgery. The Pituitary Foundation has lots of information on their website. If you are on Facebook there are support groups for Cushing's. Other issues that can arise from a pituitary tumour are producing too much prolactin, this is usually treated with meds. Acromegaly which is over production of growth hormone & will require surgery. It can affect the thyroid so T4 needs to be tested rather than TSH. It is possible to regain pituitary function following surgery but it is also possible that you will need some hormones replaced. If the pituitary tumour is a non functioning one then they will monitor it but remove it if it is compromising the optic nerves which are close by, it is worth getting your visual fields checked by an optician. I hope that helps a bit? I'm happy to answer any more questions if I can.

[Iona467 in reply to Hidden]

Thank you x

[Iona467 in reply to Hidden]

I wondered if you get terrible night sweats? I had this before but it was a sign of cancer, hopefully OK now as kidney removed.

[Hidden in reply to Iona467]

I would get hot flushes but not the sweats however many people with Cushing's do struggle with the sweats, some have had to get medication from their GP to help manage it.

[Hidden]

pituitary.org.uk/ These are good

[Hidden]

Hi ive a Pituitary Tumour mines a Prolactinoma so had/Have high prolactin levels.

Which effects chest and Ovaries in females Nuts in Males Had/have low Testosterone levels and it's a knock on effect Similar to the ripple effect as it goes on it spreads out.

And yes Quacks! when decent GP i had moved on as a Renta quack but was great GP.

"New Partner" Quack when i asked about Tumour replied Hormones been there already not going back there! now she's been given the elbow(Think was told doors over there as get a wry smile when asked)One have now is better as found my Prolactin has gone right back up again plus in the diabetic range! So off to Barts Endo in Jan.

I would be looking for another Quack if haven't included in notes and know about it.

[Lotika]

I am also a member of the pituitary tumour crew. Almost always benign, for a start. I find that people freak out if I tell them about mine and forget to say that!

I have the entry-level sort, which is a non-functioning one, so mine doesn’t produce extra hormones. We just monitor its size as it’s a macro and is close to my optic nerve and I have yearly hormone tests. Actually, my GP seems to test my hormones every time I present with anything and I have concluded that they are just quite excited by it... If only they would get that excited about my Hashimotos!

I do recall how scary it is finding out that you have one of these babies and how stressful it is thinking you have a lump in your head, even if it is a 99% likely benign lump... I read a lot, joined an online chat group (there is a US based one, or was... I forget what) and probably had the pituitary foundation advice leaflets memorised... I think - and I’m time, you will be able to correct me - that even the functioning ones are often well controlled by medication. I was very worried they’d want to evict mine, given he’s so close to my optic nerve and we didn’t initially know that he wasn’t causing the visual problem. Currently, unless he starts trying to blind me, he is staying put. He has a name - I figured we should be friends. We came to an arrangement. He has a home for life here as long as he behaves himself... We’ve been on first name terms for 10 years now, so he seems to be sticking to his side of the bargain and I give him a wave on the annual scans. The endocrinologists now think - as he hasn’t put a foot wrong so far - that he probably won’t cause any trouble and have reduced the frequency of the scans.

Anyway, I do hope that your pituitary adenoma learns to respect its home. And that you are able to come to terms with it, of course. I was very freaked out whilst waiting 7 weeks from diagnosis to find out if they were going to take him out. They don’t like to take them out, it transpires. I think that’s a good thing.

Best,

Lotika.

[underact15 in reply to Lotika]

Thank you for this, Lotika ; I have just come home from a hospital appointment having been told that I have a “lesion” on my pituitary. You’re right, it’s an uncomfortable feeling knowing that there’s something a little alien in your head! They’re going to refer me for a more detailed MRI and bloods. I also have Hashimoto’s 🙄

[Lotika in reply to underact15]

Yes, I’m hashis too… it’s weird, but I assume that it is unrelated in my case, given hashis is autoimmune… how are you coping with it all? I remember being a bit of a basket case with mine initially… it was the shock of having a lump in my head, I think! Now I realise I haven’t thought about the thing in weeks…!

[Hidden]

They rarely operate these day's due to the issues it causes so rattle your bars and throw you Cabergoline pills(where do they get these names from bet have a "Special" department Hey give us a whacky name for this!)then only if fail to do the trick consider it unless other issues that need to go in quicker or can't take drugs?

[Iona467]

Does anyone have a low body temperature sometimes too?

[Di01]

What pain killrrs are best for pituitary gland headaches ?

[Iona467]

I also have a 11x7.3mm head tumour onthe left hand side of my head. Just had an MRI and it showed it is still growing. 😩