Acromegaly - anyone ever heard of it?

To bring this up to date. That first injection definitely 'wapped' this tumour. A few days prior to having it I had a very miserable couple of days and nights as my hands got very painful, pins and needles all the time, feeling cold,etc. Little doubt that this was due to the effect of this tumour. Anyway, within a couple of days of that injection they started to return to normal. After a couple of weeks, no more pain and I was able to get back to my knitting, etc.

I have been told that although the injections cannot reverse damage that has been done, it should stop the tumour from growing and may even reduce it slightly. Feel the first one definitely had a good effect for me.

Specialist nurse came yesterday to my home for the second one. I asked if I could be taught administer these myself (as I am going to be on them every four weeks for the remainder of my life), and he talked it all through with me in detail.

Then, under his guidance, I did it for myself. My main problem was giving it too fast, need to slow down how I actually push it in. Will do the one in four weeks time under his guidance, hopefully then will be able to do these totally by myself.

This is important to me, as I found it very stressful as there was no way I could get the time the nurse was coming until the actual morning, which meant I was not able to get to a Committee meeting yesterday. I get these injections delivered to me at home four times a year, and have to keep them in my fridge, taking out the one for use a good few hours prior to it being used.

Felt so pleased with myself that I was able to do this to myself, and am sure that as time goes on, will have no problems.

I am coming to terms with this strange syndrome - it is now shown on all my medical/dental records, etc.

I still feel bewildered that if it had not been for that emergency admittance to hospital last August on something (probably) totally unrelated, I would still be undiagnosed. Cannot thank that young Doctor who picked up outward signs of this and ordered that important blood test.

Well I have survived the first of my 4-weekly injections. Lovely specialist nurse at hospital with whom we had a long meeting and she explained fully all the details of this strange condition, gave me loads of literature and details as to how I can contact her anytime I need to do. Will have a specialist nurse continuing these injections in my own home in future,

Did get a couple of the most common side-effects which have given me a miserable couple of days, but think I am over those now. Will know for future to keep couple of days after injections pretty free. Was worried as I am due to be taken away for a lovely long weekend now visiting eldest daughter and some olditime friends in london, and a planned wonderful day with my eldest g.daughter in Norwich. Did not want to have to cancel that.

Had to see GP yesterday on unrelated manner, and he looked into my records, Evidently, this was picked up in an MRI in 2020, and \neuro bods were sent it and they recommended it going to Endocrinility. Surgery sent it to them and never heard anything further and did not chase it. It was small and perfectly operable back then, and would have avoided so many of the subsequent problems including my sleep apnoea.

No point in getting upset now, cannot go back in time. I will need to have lots of on-going hospital tests to check how will these injections are doing and any effects they may have on me, so it looks like more hospital appointments. Next one is ECG to make sure there is no enlargements there.

Thank goodness for NHS -

Dear Franbern I am sorry to read of your health problems and so sorry the condition wasn't treated in its early stages.
I send you my very best wishes as your treatment starts.

This has been a very interesting thread. Thank you Franbern for your informative posts. Your refusal to moan does you credit, too. I hadn’t heard of the condition before reading this.

Just to update. I am due to commence what will be monthly injections on Tuesday this week. It is hoped that this will stop further growth of this tumour and, maybe, even shrink it.

Rather stupidly I 'googled' these injections, and found out all 'could be' side effects, which includes hair loss. All rather rightening.

When I received the full report from the endocrinologists, I noted that as a result of my going to the GP back in 2020 as I was getting strange pains in one part of my head, the subsequent MRI I had then, actually picked up this tumour at its very early stage - but there was no follow-up. That was Covid year, so probably no-one at my GP surgery actually read the result of that MRI. Had they done. then this tumour could have been treated in its early stage and not caused that subsequent damage to me it has done.

One of AC looked up figures for acromegaly and happily informed me that I was one in two million. I would have been much happier not to have added to those numbers!!!

Also Franbern, I am so sorry that you are having to go through all these health issues.

Thankyou Franbern

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CrazyH you are correct to an extent. However Acromegaly in adults has many of the following aspects

Acromegaly is a rare disorder from excess growth hormone (GH) in adults, causing gradual enlargement of hands, feet, facial features (jaw, nose, brow), and internal organs, usually due to a pituitary tumor. Symptoms include deepening voice, joint pain, sleep apnea, carpal tunnel syndrome, and skin changes, leading to serious health issues like heart disease and diabetes if untreated, though surgery or medication often resolves it. Diagnosis involves blood tests for IGF-1, and treatment focuses on normalizing hormone levels to prevent complications and improve quality of life.

Many of these symptoms I display. But each one has individually been put down to other things. Much to my ageing. Sleep Apnoea (for which I have a separate thread) due the fact that my BMI was above 30!!!

I thought that my larger hands and increased shoe size was just down to general thickening caused by old age. Carpal Tunnel due to my many years as a typist, and so on and so forth. I have annual blood tests and on those occasions where I have been told I am heading towards type 2 diabetes, I go on a strict diet and then a repeat blood test has always got me back to 'okay'. As an old lady, I should have thin lips, mine are plump - I feel embarrasing so - but other people have pointed out that people pay loads of money to enlarge their lips!!!
Even strange pains in my head and a CT scan about five years ago somehow missed this. So this tumour (although non-malignant) does have growth and is now pretty large.

I am glad you are finally getting the right treatment.
To any doctors out there ... beware of putting things down to old age!!!

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

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

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.

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.

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.

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.

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.

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

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.

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

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.

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

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

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.

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.

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?