Hi can I ask , we're u tested for acromegaly first I ask this because I am struggling to get anyone to take on my case and symptoms are getting worse

Hi faith-hope-joy
Yes I have had pains for many years and has undergone many tests. I posted something here seven years ago, will try to attach the link to the post and you'll see what tests I've taken

https://www.dailystrength.org/group/acromegaly/discussion/do-i-have-acromegaly

It's not letting me click on it . I still believe I have acromegaly but have had 2 normaligf-1 s . Some of my symptoms seem more "brain "related . It would be helpful to hear your symptoms to see in regards to mine . Psuedo is something I have tied to resaearch also but there is hardly anything on internet and only a few cases on this site that have been diagnosed with it . My thoughts are with you , you will be glad you have been diagnosed I'm sure it was not easy why do Drs treat us like we're making things up ! Yeah the link doesn't work x

Yes I see that det link is not clickable. You can copy and paste web address, all my symptoms is there.
I hope you soon get a diagnosis an get help with your problems. It isn't easy when they dont believe you :-(

Thank you So much will have a look x Also could I ask how long it was before you were diagnosed and did you have to seek out a specialist i.e. From a pituitary centre or was it a local endo? Mine just ignore don't acknowledge everything I say

Also I don't think any of the psuedoacomegaly users on this site are still active I've looked also to no avail ☹️️

From I was sick until I now is diagnosed it took 10 years. But I have had the disease much longer than that.
We have not the same system with pituitary center here in Norway, but I've been at several endocrinologists.
It's not easy to get doctors to believe in you, especially when blood samples are correct.

Hi Hun sorry meant to ask did you have dark patches creases on the skin ? This is consistent with severe insulin resistance (psuedoacomegaly) I believe .i do not have that . Also I read in your earlier post that you put on seven years ago they did find a pituitary Tumor . Is it definitely psuedo cause I have came across another lady that has all symptoms of acromegaly a pituitary Tumor but normal igf-1 . She has no diagnosis either and she believes here disease is cyclic .i have tried to get in touch but he posts she put up were a few years ago so I doubt she's seen my replys . Just keep an eye on your medication working .

I do not have dark patches creases on the skin. I have high levels of insulin and high blood sugar, so I'm insulin resistance. The endocrinologist think that is the reason for my growth.
The tumor they believe are too small to be of significance. My growth hormone levels are normal, but IGF-1 is high

If your igf-1 is high that means you have acromegaly . Growth hormone changes all the time so is not reliable. igf.1 being high means acromegaly . Other members on here have been diagnosed with acromegaly still haven't found there tumors yet some can be as small as a needle pin and not seen on MRI the fact that it's small makes no difference . Long term acromegaly causes insulin resistance and high blood sugar too though . If your igf-1 is high I don't understand why they don't remove the Tumor . As I said if your medication doesn't work I woyld be asking questions

The people on here have a lot of information if you have your high igf-1 numbers u could ask other diagnosed members to compare it to there's because a high igf-1 sounds like acromegaly to me . And the research I have done has said that virtually all people with severe insulin resistance syndromes(puesdo) have dark patches . Don't want to question your diagnosis Hun but it doesn't sound right to me , not many members seem to be on these days so it might take a while to get a reply but I would check

Yes, I agree with you. I have tried to argue with Endocrinologist but it does not help :-(
But it's nice to get support here, and I will argue harder next time :-)

Why is it such a nightmare for us all ?!!!if anyone has acromegaly symptoms they should be treated immediately not dismissed and sent home .There is only these 2 diseases that exist that causes jaw /facial bone growth and these symptoms something needs to change with these Drs . I can't believe they just leave people for years with this awful

I can't seem to get the link up but there is a few things online that say 1gf-1 being high despite normal gh still means acro these are from medical journals .have a look and take them and take them to your dr . Hope this helps

Yes i will do that, thank you :-)