Acromegaly - anyone ever heard of it?

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

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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.

Thankyou Franbern

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

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!!!

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.

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.

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 -

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.