Standard protocol is an annual MRI. Numbers should have nothing to do with that. Are you being followed by a neurosurgeon?

On the plus side, you are on medications that can shrink tumor size. So, hopefully, these medications are not only helping with your numbers, but also the size of your tumor.

On a side note, high end of normal is not the suggested target. Bottom third of the normal reference range is where your doctors should be aiming.

I don't have experience with HMO's, but can you request a different endocrinologist? I'd ask for a referral to a neuroendocrinologist.

Good luck!

Thanks. I don't know what to do, I feel like my hands are tied. I saw two previous endocrinologists (one a fertility) before the one I have now. The fertility one thought I was crazy ( literally told me that ) and the other one ran the wrong tests and told me nothing was wrong. I feel I'm in a conundrum. I'm one of the rare one of us whose tumor isn't visable, so I've never have seen a surgeon through my HMO. Grateful to have been diagnosed and getting meds but petrified to have them taken from me. I'm worried cause I'm not the regular Acromegaly patient of seeing someone else and them saying there is nothing wrong and taking them away from me. I feel like they can and should be doing more. I'm really concerned the tumor is growing since I haven't been well for the past two months.

If you haven't seen a neurosurgeon, who read your MRI? I wish I knew more about HMO's, but I just don't. You need a skilled neurosurgeon to look at the MRI. Do you have a teaching hospital near you? That's usually the best place to start. Another option would be sending all your records and scans to UVA (University of Virginia). They have a dedicated pituitary center and for a small fee, (I believe $250 to $500) the will review your case and make recommendations. Perhaps, if their recommendations were different than your current treatment, you could take that to the powers that be at your HMO. At the very least, I'd try to find one of your doctors that would be willing to refer you to a neurosurgeon for a follow up MRI and consult.

Another option would be go to a lab on your own for a Prolactin test. I think the cost would be around $100.00. Find a local lab, for example Any Lab Test and see if you can request this test yourself.

Hello there,
I am sorry that you have to part of this group but at the same time I am happy to see you here. I am being selfish when I say that because I am in the identical place where you are. I too was diagnosed almost 2 years ago and am one of the very few of us that don't seem to have a tumor. I too am on sandostatin and have recently have had to start cabergoline .5 once a wk because the increase to 40 mg of sandostatin was not decreasing my growth hormone numbers. My numbers are not as high as others I see here and are hovering around 250 which my endo says should be 176. Before I was officially diagnosed with this, I was sent for an MRI and no tumor was found, a year later I received another MRI and still nothing so my endo has suggested now that I only go every 2 years. I'm okay with that and am more concerned with the igf-1 numbers. I will go back in 4 mths to see if the cabergoline is helping and that will be worrisome if nothing changes for the better. I guess your doctor is happy that your numbers are good and I will be happy if I can get my numbers down too. I think he might be right in that you don't need another mri unless your numbers jump but then again, I'm not a doctor. I hope all stays well with you and I will look for further posts from you as now I don't feel so alone knowing there is someone out there like me who's numbers are under control. Take care.

I too have no tumour that can be identified - just a slightly abnormally shaped pituitary which may be the cause of the excess GH. I was initially put on cabergoline which did help with the numbers ( I came off for a while and numbers and symptoms increased). However I then developed very bad nasal congestion (a side effect of cabergoline ) which doesn't help with the sleep apnea and so I was transferred onto somatostatin injections in December and gradually reduced the cabergoline and then stopped. I am due back to see the consultant early may so it will be interesting to see what the levels are now - my feeling is that they are not as low as they were as once again I am getting increased symptoms. For me I seem to be able to tell from a very strange body odour that I detect if my numbers are higher and increased sweating. I've had several MRI scans over the last 5 years or so and a body scan but nothing has shown up. I probably won't get another unless the numbers rise noticeably as really nothing will be gained by having one. The longer things go on the more important management of symptoms becomes for me - I probably feel they will never find a tumour now so quality of life is more my focus.

Thanks for all the responses. It makes me feel not alone. Did any of you also have nipple discharge too?

Yes - my prolactin levels were right on the upper edge of normal range but dropped to almost nil with the cabergoline. Will be interesting to see what the levels are now that I am no longer taking cabergoline. I should find out at my next appt.

Hi there, I have not had any nipple discharge but maybe that's because I'm post menopausal. I have read that the cabergoline does help with that so I was a little confused as to why the endo suggested I try it. But, I'm willing to give it a try and will find out in July if it has helped at all with moving the numbers down. Do any of you ever have throat issues? For me, it was one of the initial symptoms of this disease. I felt like I always had post nasal drip and unable to swallow down mucus. Now it seems that the drugs have relieved any swelling and it's not a problem. My snoring, which my husband tells me was crazy loud a few years ago, is reduced to almost nothing. Sometimes I have a bad night but that's only when I have a cold.

Before I was dx'd I had nipple discharge. This led to a prolactin test where my levels were high but not outrageously so. It was not a lot. However, I also had itchy breasts occasionally. Another dr with whom I consulted for hypothyroidism told me that is a common symptom of elevated prolactin levels. I have had this again from time to time, but I am on Somatuline & my IGF-1 is slowly climbing. So, it is reasonable that the occasional spurt in prolactin would occur, too.

No, you aren't alone. It is common to have elevated prolactin levels with acromegaly. Kind of a '2-fer" as the ENT surgeon told me!

Among the many reasons I am opting for surgery is because I am not convinced this tumor isn't spitting out other things or causing other problems, perhaps not enough to be "abnormal", but maybe abnormal for my body. The only way I feel I can get back to "normal", is for the tumor to be removed and then see where things stand. I was about to say I was surprised that your Dr. is unwilling to run other tests, but when I think about what I went through, then I'm not surprised at all. I'd ask for a 2nd opinion.

We'll back for follow up appt today at the hospital and as I feared (and detected from increasing symptoms) my igf-1 has gone up again now I am off cabergoline. The somatostatin is not holding it down on its own so a doubling of the dose and retesting in 2 months. It shows when we know our own bodies we know when things aren't right or are changing. I hope the bigger dose helps as would love to feel a but less fatigued and hot and sweaty for the summer!! Realised today that it has been almost 7 years since I came down this road and still no cause found for my increased levels !!

If you are having discharge, it makes sense to run a prolactin test. Other kinds of tumors can cause increased prolactin levels, too. Don't be scared to push your doctors. The #1 thing I have learned with this disorder is to stand up to medical professionals. You might also check with your HMO and see if they will assign a Case Manager to you. They can sometimes be a helpful advocate.