Acromegaly Support Group

Acromegaly (from Greek akros "high" and megas "large" - extremities enlargement) is a hormonal disorder that results when the pituitary gland produces excess growth hormone (hGH). Acromegaly most commonly affects middle-aged adults and can result in serious illness and premature death. Join the group to discuss symptoms, diagnosis, and treatments.

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Endocrine System
/ Acromegaly Support Group

How does Acromegaly return with a clean MRI?

warmcommunique
warmcommunique
Hi all.

As some of you know, I had an incredibly successful surgery at Mayo 1 year ago. My GH and IGF-1 dropped to normal immediately. In November we did a repeat MRI to look for remnants, but it was all clear. In March all blood looked good still. In late May, my MRI was clean but my GH was elevated again, with IGF-1 in the normal range so my endo here in Seattle, who is the best in the Northwest, had me repeat my tests 6 wks later and received a call from her letting me know that my GH has doubled and so has my IGF-1, bringing it above normal enough to need to get on Sandostatin. This wasn't surprising to me because I have had some symptoms again that I haven't had since a year ago before surgery.

She said in November she wants to do another MRI and at that time look into radiation based on the results (which she wouldn't say if she thought it would be all clear).

I don't understand how my tumor is supposedly (as of May) still completely gone, and hormone levels have been normal until now and suddenly my Acromegaly is back in action.

Could there be tumor growing again that isn't detected by the MRI yet causing this? Would it be a tumor on another gland? I'm just confused. Any help would be so great!
J0KEYJ
J0KEYJ
a pinprick of a cell left can cause for things to change.I have had my levels erractic and then calm down to really good..this has been over five years..I go by how I feel..I check on the other things that are going on not by Igf alone..my blood pressure..my thryoid..prolactin.. sugar levels..I have a full profile done.. and take in the whole picture..Im not am expert but I think the pit has to balance and sometimes levels can come higher..which it has done for me suar levels high..elevated igf..all fine really low
Aworriedwife
Aworriedwife
Like Jokey said, it takes only a few cells being left behind to cause problems. Unfortunately, I've seen many time on these forums where people assume they were cured, only to find out years later their tumor has returned. I think remission is a better word than cured. We were told that even if the tumor was completely removed, it didn't guarantee that levels would return to normal.

I'm very sorry to hear that you are in this position. There is a reason that they don't do surgery, get a clean MRI, declare you cured and send you on your merry way. The constant monitoring is because the sad and scary reality is that it's not unusual for this condition to rear it's ugly head again.

I really do hate to hear your news. It's a remider of how cruel this disease is. It's, also, a reminder that it is in fact an orphan disease. Most people have never heard of it and people aren't exactly throwing dollars at it to find more information or a cure. There's no pretty ribbon for acromegaly awareness, no walks, no nothing. So, a lot remains in the dark and cases like yours continue to be a mystery. I know you are shocked, upset and confused, but you aren't alone.
J0KEYJ
J0KEYJ
aworriedwife couldnt of said it better..remission is the better word..I do not like the medical profesions word of cure..the words chronic illness say it all..my hospital hold up hand was very honest with me..told me they can try and get me to a good place and yes as one member on here would say nearly perfect LOL..I know the reality that its not so simple and yes it takes some doing to get youre head around the fact that we are still leading the way..
warmcommunique
warmcommunique
thanks to all of you. honestly, im just really angry right now - and feel alone. my future is, like many of you feel, a question mark. my plans have gone to sh$t... and i'm having a bad day/night. sometimes i wish i could just sit down face to face in person with someone, who knows. who knows what we all go through... but as my dad always says, we gotta suit up, show up, and do what's in front of us. moment to moment, where we do have control.... then by being so present, and focused on the "moment" at the end of the day, we realize we've done more than we thought possible that morning when we woke. i know many of us are so fatigued that we just have days we can't do anything - i'm one of those... and my life before was so crazy insane working in the advertising industry - which i absolutely loved. can't have this disease and work in that industry. but i do know that this rare, random ass disease that is completely unpredictable doesn't have to dictate how we feel about ourselves. and i'm going to fight. even in anger - use it as fuel. and as hard as it is,i won't hide out.
J0KEYJ
J0KEYJ
yes you kick the ass ..way to go..:)
J0KEYJ
J0KEYJ
thats the thing this conditon can affect things we love..I felt it sucked the life out of me slowly turning me into somebody different..but Im only its victim if I give up and dont keep fighting..
deleted_user
deleted_user
I hear you. I went through the same situation recently. Had the surgery, docs said I was cured, blook work looked good for a year and then I felt the symptoms again, headaches, fatigue etc. MRI and bloodwork confirmed. I was really pissed at first because I'd talked myself into thinking that my acro journey was over. Denial was huge. Mayo neuro said it was back but not operable because its wrapped around the carotid artery which was hard to hear as that meant I would be dealing with this beast for life. My headaches were an every day, all day occurance and I couldn't imagine having to deal with the pain forever so I chose to continue to be aggressive with this thing and went the route of gamma knife which I did in May and am currently on 90mg of Sandostatin every 28 days. After 2 months on the shots, no side effects and I feel almost 100% better which gives me hope.

Don't give into this thing, keep pushing forward and know that there is still hope.
spiegal
spiegal
Hi, my daughter nealy 6 years ago was diagnosed with acromegaly, 2 surgeries, stil has remnant tumour, also wrapped around both cartoid arteries, invasive and very aggressive macro, surgeon at Barts and prof, said the only way to go was down the radiation route because it as growing quicker than the drugs would be alble to keep it at bay. This of course was a terrible time, she was 26 yrs old. I remember our nurse at Barts saying, she won't turn the corner for at least 5years I was mortified, she has had a hard road, plus her remnant tumour started pressing on the trigeminal nerve, how unlucky can one be.. This is one of the worse pains ever, hers was constant, 24/7 well it's been nearly 6 years and she is doing so good, she still has days that aren't so good, but she is smiling and laughing again, to see someone in pain everyday for so long has such an affect on the whole family specially when you can't do anything. She is now on thyroxine, and feels even better, her levels are stable, that word is so good to hear. Take care