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Possible acromegaly - need hand holding and any experiences? A bit long

(7 Posts)
Sixweekstowait Sat 01-Nov-14 09:50:23

I've NC for this. Bit of background - went to GP 3 weeks ago with UTI. Whilst there he took my BP which was quite high and told me to monitor it at home for two weeks. Over the w/e I was worried how high it was (180/90) so went back on the Monday- saw different GP. She felt there might be something else going on with my growth hormones and referred me to the endroconologist who I saw on Thursday ( aside comment we have a brilliantly functioning NHS here). I'm definitely hypothyroid (TSH 14.5) and he started me on thyroxine. I understand all that, know it's commoner in women as you get older, no side effects, may take a while to get dose right etc etc. but, like the GP, has concerns about groth hormone. I went for blood test yesterday - the query diagnosis is acromegaly. Unfortunately the results will take about 6 weeks to come through. If it is this ( I can't even pronounce it yet) it seems really serious. It is caused by a non- benign tumour on the pituitary gland and its a 3-4 hour operation to remove it with 5-10% chance of problems etc. I won't go into all the rest but suffice it to say I feel l am on the verge of tears all the time. My DH is a great support but I can't keep unburdening myself on him all the time , dd is going through hard time at the moment so have just told her about the hypothyroidism. Acromegaly is very rare and I know the chances are that the test will be negative but it's not helping at the moment. I won't know until the week before Christmas and we have a 5 week long haul holiday planned from 31 December. I just don't know how to cope with the next 6 weeks, get ready for Christmas, think about the holiday. It's so any hand holding will help as will any experience/ knowledge of this

RockinD Sat 01-Nov-14 09:57:55

No experience I'm afraid, but you could do worse than contact these people who were very helpful to me when I had issues.

Sixweekstowait Sat 01-Nov-14 12:54:26

Thank you Rockin- I went on their website and have now downloaded the acromegaly brochure which is scarey but very useful and clearly written

Willdoitinaminute Sat 01-Nov-14 16:25:03

My mum had acromegaly diagnosed in her mid forties. My sis and I are both dentists and had noticed changes / symptoms long before she was diagnosed but her GP felt that we were being a bit keen as we were both recently qualified. I suspect she had egg on her face when she found out. Often the earliest physical sign is movement of teeth and growth in the jaw but this happens some years after the disease starts so the good news is if you have no physical signs then you are likely in early stages.
The high blood pressure is typical as is hypothyroidism which may be secondary to the acromegaly.
Treatment depends on the type of tumour. A micro adenoma or tumour may respond to drugs a macro adenoma is more likely to present problems due to pressure on surrounding area so surgery is a better option.
My mum had surgery (late 1980s). Although a complex op she was up and about the same day and recovered very quickly. The surgery was successful and many of the changes reversed.
I think you have been lucky to have had blood tests done early on. I remember my mum having hormone problems in her mid thirties and going through what she thought was an early menopause. She just accepted it and didn't have any tests done.
I hope the news is good but if you are diagnosed there is treatment. In many people they have the disease 20 years or more before the physical changes are really noticeable.
I also have a micro adenoma in my pituitary. It was diagnosed in my 20s. After blood tests I had X-rays, CT scan and MRI. It has become active again this year so I am back on medication and will probably have to have another MRI. My tumour produces too much prolactin which has led to hormone and fertility problems.
I hope this helps and that your tests come back negative.

Sixweekstowait Sat 01-Nov-14 17:11:05

Thank you Will. So if it's poitive, it wouldn't neceassarily mean surgery? They'd do an MRI to see the size and then decide on best treatment option? I think the best thing I can do is keep busy for the next few weeks but it seems like an eternity at the moment. Sorry about your problems and it starting so young with you

Mrsmorton Sat 01-Nov-14 19:33:31

One of the first surgeries I ever watched as a student was a pituitary op for acromegaly. The patient was absolutely fine and dandy afterwards, obv I only did immediate follow up but just wanted to tell you that if you need surgery then don't panic.

Great that you've found it early too!!

Willdoitinaminute Sun 02-Nov-14 12:20:39

In answer to your question re surgery it is impossible to know. Some people respond really well to medication and the tumour shrinks. Some don't. At the time my mum was diagnosed the only drug available was bromocriptine which wasn't effective for her. Now there are a number of other drugs used for pituitary adenomas.
I take cabergoline. In fact I was part of the original clinical trial for the drug 30 yrs ago. The drugs do have side effects, but they settle down after a few weeks. I tend to loose weight as my appetite disappears and I often have sudden onset tiredness.
There is a uk pituitary website with a forum but like most forums people only tend to post with problems. Most of us who are well control don't tend to seek out support.
I had fantastic treatment from Professor Paul Stewart at the QE Birmingham, he has a particular interest in pituitary problems.

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