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Avatar universal

Elevated Igf-1 with 1mm Cyst ( tumor) Is this Acromegaly?

Hello,

   Hello everyone, so here's my story.

Since Oct. of last year I've been dealing with the most annoying headaches. I thought it was nothing cause I do suffer from migraines but these started to become very frequent and different from my typical migraines. I had vision problems also. So, of course I sought help from my neuro. He order for me to have a MRI since I already had a baseline MRI from 5 years ago. He wanted to compare to make sure nothing had changed. Unfortunately, I started have very high BP in the 173/110 range for weeks and had a syncope episode at work. I was rushed to the ER where I had a MRI done. Fast forward to couple of days later and I'm sitting back in my Neuro docs office and he dismisses my headaches to my migraines. No matter how much I tell him this is different, but before I leave he takes a look at My most recent MRI and the tone in his voice changes and he starts asking me an array of question.... have I ever had problems with my pituitary glad? Has my left eye always been droopy? How are my cycles? I'm like what's going on.... He tells me something isn't right on the MRI and it looks different from my baseline. The MRI reads as:

There is slightly prominent enhancement of the infundibulum, but this is not definitely abnormal. In the posterior aspect of the gland, there is a 1 mm area of hypoenhancement probably representing an incidental Rathke’s cleft cyst.

He orders Tsh and Prolactin. My Tsh came back at 5.46 normal range is 0.27- 4.20. The prolactin was normal. Of course, that's a ticket to the Endo. He runs blood work again but now my Tsh level are fine, but he orders something called Igf-1 and the results for that is IGF-1 (Normal range is 53 - 331 ng/mg) Mines was 474. I also had something called Z- score done.  I did the Ogtt but I believe the nurse did it wrong, as she only drew one time after I drunk the glucose.  I tried to tell my endo but he said I passed and I'm fine.  No more follow up is needed.  When I asked about my elevated IGF-1 he brushed me off. Is the 1mm cyst or tumor ( their not sure what it is) and my elevated igf-1 enough to dx me with Acromegaly? Sorry for the long post.
2 Responses
Avatar universal
COMMUNITY LEADER
I would get another opinion. First, it dies not appear that you have been tested correctly. They should have done a stimulation test with glucagon not glucose, and you need a neuro- endo not a neurologist (they never know how to treat pituitary ever) and most normal endos think they can, but I think they get an hour's worth of training over six years as they don't seem to have a clue.

Your MRI should have been with and without contrast and dynamic technique. 1mm is small side, but size is not the factor, even a tiny one can pump out wild amounts of hormones. It may be a cyst in which case it is still an issue may be a rathke's cleft cyst and not imaged well. Any other testing like on cortisol, fsh, lh, ACTH, gh etc?

I just had surgery recently and my posting is... Not reliable dealing w a post op infection.
1 Comments
I had free t4, tpo antibodies done. I had my GH done but that was at the time of the OGTT.  I knew something wasn't right when she asked me was I being tested for diabetes. Nothing else was ordered which was kind of strange to me. My Mri was with contrast but I'm not sure about the dynamic part. I think that's why the Neuro wasn't worried about it because of the size but you put that with a elevated Igf then we're talking about something totally different. I live Atlanta so I'm trying to see a Neuro-Endo at Emory. I have a lot of the symptoms of Acro just not the physical features. I'm sorry about your recent surgery. I work in a surgical office so I know how bad those post-op infections can be.  
Avatar universal
COMMUNITY LEADER
If you get a copy of the report, which is a good idea, it will say if dynamic or nor. If you were taken out of the machine and given contrast, it was not dynamic. Dynamic means the uptake of the contrast is recorded and smaller tumors can light up larger.

I hope you can get over to Emery. Acromegaly can be insidious and while the late stages can be diagnosed by a six year old, it should be cought earlier before so much damage is done. The physical features are late stage.

My Cushing's destroyed my immune system so healing has always been an issue, but truly this has been the worst. I am still seeping goo... Ugh.
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