Acromegaly - anyone ever heard of it?

I have heard of it. I know of 2 cases - both younger men.

They don't seem to have any issues except their extremeties - head, hands and feet - are large.

I should say that I think they have both had treatment.

Do you mean agromegaly?

My sister has had a pituitary tumour for most of her life and hasn't suffered too much as a result.

I think it's acromegaly as in the OP.

Are you sure that this is the diagnosis?
As you are posting to gransnet I presume that you are a certain age .

I would telephone the Doctor and insist on having a discussion about it to allay any anxieties.

My neighbour (aged 65 ) had a pituitary tumour , which caused blackouts and fainting spells .
She had it removed and is fine with no ill effects .

It seems more common in young men .
My parents knew and liked Christopher Greener who used to be Britain's tallest man .His pituitary tumour was not diagnosed until he was an adult and accounted for his height .
I hope that you get a proper diagnosis and the correct treatment .
Wishing you well .

Yes a friend had it years ago. She had always been petite but she put on weight, her face coarsened and her hands and feet changed shape. I think she also had problems with fatigue and depression .It took a long time to diagnose but she eventually had surgery to remove the tumour

No point in trying to talk to GP about it. My guess is that when they get this report they will be looking it up to find out about it. Amazing that some junior doctor at the local hospital picked it up at all.
Obviously, the extra growth is not extreme. My hands have always been 'peasants' hands, and yes have got larger, I can only purchase for use Mens gloves - no Ladies fit me. My show size has gone from the 5 1/2 when Iwas younger to a wide 7EE. Have quite a large nose (but it runs in my Fathers Family), my lips would do good service to those companies that advertise their plumping work. At my mid-80's these should be getting thinner.
But it is the other symptons such as joint pain, return of night sweats, excessive tiredness, sleep apnoea problems, etc.étc. all of which I have been trying to report to GP's over past four or five years with little help from them.

Blood test taken at hospital came back positive, next state is for GP to refer me for MRA, etc. so I assume it will be quite a long waiting game.
Just came on here to find out how rare it is and am pleased other people have, at least heard of it.

My facial features are very similar to my Dads (who died just about the age I am now), and am therefore wondering how genetic this is.

Yes I have heard of Acromegaly, wouldn't have been a half decent nurse if I didn't understand the condition.

Harriganthat is very interesting. In your experience was it often diagnosed so late in life as mid-80's?

If I do have it would explain many things. Have not been able to wear wedding or engagement rings for very many years. Would have a job even getting them on my little fingers now.

Do you know if it can be treated chemically? rather than with operation, I am so wary of ops now particularly with such bad breathing problems?

I had to go to GP a couple of days ago as was not too well again. Saw lovely, new young lady who I hope to keep as my main GP. So while there I asked about this condition, and she was very excited. Told me it is rare, and she is being envied by other doctors in practicefor having patient with condition. Yes, Doctors do cover it in their training,, but rarely actually get to see someone with it. Answered some of my queries and I have already been sent an appointment in October for hospital endrinocology tests, etc.

Sorry I am late returning to this thread.
My experience of Acromegaly was mainly in middle age and more predominately women.
Obviously I am retired now and medicine has advanced so I am unable to comment on treatments but growth hormone antagonists are probably used.
I do know of a lady who had an operation but still had to have medication.

It is covered in the training at Dental Scools too - or at least was.

Just an update on this condition. Have now attended at cinic, seen a lovely professor of acromegaly. All confirmed that I have it, due to have an MRI in a couple of weeks time, to see how large the tumour is. Do not think, at my age, they will really be considering an operation, hopefully just medical means to try to shrink
This all comes at the same time when I finally managed to get a referral to sleep clinic for my sleep apnoea, which - it appears is one of the main symptons of this condition.

Having now been diagnosed with this as 'serious' I have now a cpap mask etc to wear every night. All a little daunting for me. From what I understand, late diagnosis gives little opportunity of much reversal of main symptons, but still got a lot to learn.

I note that one thing I keep reading is that Acromegaly can take up to ten year of life expectancy, - as I am already 84 years old, not quite sure how to take that!!!!!!

Next step for me is to ensure that my current GP understands my need for a diazopan tablet for me (very claustophobic) to get through that MRI

Further update. I am, very slowly, getting used to wearing that CPAP mask every night. There is no doubt that it has already made a significant benefit to my sleep, as I am now awake during daytime,
Instead of having to work everything around the very few hours morning (3) afternoon (2) hours I felt awake enough to do anything each day, I have now gained many hours. No need to sleep after breakfast each morning, short (one hour) nap in afternoon.

Do dislike wearing that contraption though, with my normal SAD clicking in with change of clocks, I have found it difficult early evening to fight off depression as I start to remember that is what I need at night. Sure time will help this and I will grow in confidence with it. It appears as if Sleep Apnoea is one of the main symptoms of Acromegaly.

The acromegaly is being followed up. My MRI is supposed to take place Saturday a week, have been refused diazepan by my GP as it is not permitted for someone with Sleep Apnoea and Asthma. Not sure if I will be able to cope with this without that. Have written to Acromegaly Doctor at hospital informing him.

Yesterday I had to attend outpatients for tests to see how well my body coped with producing etc different hormones. Blood tests, the injections, then more blood tests etc. Results will be sent to acromegaly clinic.

I feel that I am probably older person to have actually been diagnosed with this condition (84 years), so not sure what they can and will do. Know that nothing can be reversed.

Had I not had that emergency time in hospital, this condition would have remained un-diagnosed.

Maybe there's another form of sedative they could prescribe for the MRI. It's got to be done though.

Don't worry about the MRI. I had the same fear.

MRI staff are used to anxious patients and I found them brilliant at managing my claustrophobia right the way through (no sedative) Just tell them as soon as you arrive.

I learned about acromegaly during my nurse training around 1950, so despite that I have forgotten about it I know how to research it.

My friend’s DH had this diagnosed about 5 years ago when he was about 60. He went to the GP with a bladder problem and the GP noticed the size of his hands. He had a successful operation and is now enjoying an active retirement.
I’m glad you have found a sympathetic doctor who is interested in your case.

Thanks for replies and comments.
My GP did not feel there was any alternative sedation, it is the fact of it being a sedation that is the problem.
I intend to telephone radiology in advance of attendance to let them know this problem.
Caleo, I am amazed that this condition has been known for such a long time. Never heard of it prior to this diagnosis a couple of months ago.
The last time I had an MRI was back in April 2019, when I had a stress fracture in my back. Surprised that this growth was not noticed then.
Wonder if it can develop, and if so did it just develop in me over the last couple of years???
Must say that the CPAP machine is having its effects on me - I am really awake now during the daytime, feel much brighter, and people keep commenting on how well I look.

Suddenly, I have too much time in each day, as, with the exception of a short 60/90 minutes after lunch nap reasonable at my age, I am now awake and happy doing things from when I get up around 8.00 and to when I go to bed at 10.00.
Still wary of this machine, but starting to believe in it.

I have heard of it, but never met anyone who has had it. I recently mentioned to the doctor a rare condition I had as a child and got the excited response,'Oh, we learnt about that at medical school, but I have never met anyone who had it before'

I would agree about CPAP machines. DH had sleep apnea for years, he would not listen to anyone, not me, nor DD, when we told him, just tired and grumpy all the time. Then he had a micro sleep when driving, in slow moving traffic, he drifted into the van in front, no damage all round.

To give him credit, he was down to the GP the following day and got a CPAP machine and, as you say, the difference was incredible.

MRI machines can be intimidating. I just shut my eyes thought about something else and mentally cut myself off from my surroundings. The side effects can be a stiff back from lying down on a hard slab for a few minutes.

When I had a head/brain MRI I followed a friend's advice and shut my eyes from first lying down to when I got up to leave. One of the technicians patted my hand when it was soon to start and said. You will be fine. Which I was. I was surprised by the noise though and lay there thinking which direction will it come from next and that took my mind off it a bit.

I dont know how long it actually took, but it seemed to be over and done more quickly than I was expecting.

MRI yesterday. Professor from the Acromegaly clinic at the hospital did the prescription for a single 5 mg Diazapam tablet, which I collected at the hospital pharmacy and took a hour before that scan. My daughter stayed with me throughout the scan and the staff were really lovely and supportive. With the tablet and keeping my eyes firmly closed I got through it although kept the panic button firmly in my hands throughout.

So, having had the special blood tests last week to show how I react to hormones, and this MRI, I now need to wait for an appointment to return to the clinic to find out what (if) they are going to do anything. Have already been told that they cannot reverse any effect the Acromegaly may have on my body so will need to continue wearing large mens gloves, etc.

Still persevering with my CPAP machine. Also learning NOT to read specialised groups on fb, as most of the people on those seem to be there just to moan about the condition, etc. Very little positivity. Did discover this when I went on a couple for ostomies - something I had over 35 years ago. Saved my life at the time, AND gave me my life back.

Had these fb threads been around then, and had I read them no way would I have felt at all positive about this operation and outcome. Same with these CPAP groups.

I have just returned from hospital appointment with Experts re. my Acromegaly. Evidently, the brain scan showed that the tumour was larger than they had 'hoped'. Had this condition been diagnosed 20 or even ten years ago then they would have definitely wanted to operate.
Due to my age (84) and other conditions, this would now be last resort. They heaved a huge sigh or relief when I said I did not want this to happen. Would be a very brave anaesthatist to be willing to go along this road.!!

They did reassure me that this is not yet effecting my eyesight, and even without treatment would be another five years before it grew to touch the optical nerves.

Radiotherapy has suggested, but we finally agreed that a trial would be given of monthly injections (I would be taught to do these myself), and i would be closely monitored to see it that prevents further growth of this tumour.

A lot for me to take in right now, but at least I now know. Got to have a heart scan in the near future.

It is all a bit mor scary than I originally thought

Sorry to sound ignorant - I thought acromegaly referred to height ie being short