Wednesday, January 7, 2009

IGF 1 up!

Guys, I need a bit of help! My IGF 1 is going up, now at 454! Normal upper range value (reference value indicated in my lab test) is 307. Four months ago, it was at 404.

My GH values are: (1) 2.65 (baseline) and (2) 1.65 two hours after glucose load.

Overall, my results are not good! Problem is that we don't have the medicines here in the Philippines. I am not having radiation therapy! It'll freak me out! That's my last option.

My endo said that she will need to confer with a colleague from the U.S. on what medicine to prescribe. Seems like I'm her first acromegalic patient who's thinking of ordering the expensive medicine from abroad. The prices are so scary!

My prolactin values have always been normal. Hence, initially, my endo is thinking of giving me Sandostatin. But, next problem is how it'll be shipped as I've read that it has to be shipped overnight!

I'm worried, and I feel helpless...

10 comments:

polarchip said...

Hi Princess!

I'm sorry to hear your levels have risen. It's frustrating and scary.

My levels are still a little high and I have been wondering if I'll eventually need radiation as well. I don't think that it is that bad- the technology is quite amazing these days.

The sandostatin probably needs overnight shipping because it requires constant refrigeration, up until it is administered! So far we're still trying to figure out the right dose. I'm up to 30 mg now.

Hang in there, and keep us posted!

Princess said...

Thanks, Ellen! I'm waiting for a call from my endo on when to come for next appointment, as she will then be able to give me a prescription.

Happy 2009!
Cess

Alecia E. said...

I'm sorry to hear about the increase - it is frightening. I hope your doctor will be able to come up with a solution about the meds and that it all works out and you can avoid radiation.

I know how you feel about it. I, too, anticipated radiation coming out of surgery but it's on the shelf for the time being. It's frustrating when your options are so narrowed, but like Ellen mentioned the radiation technology they have now is good.

Please know you are not alone in this. Sending prayers and support across the miles. Keep us posted. Hope your new little one is doing well!

Starbucks Addict said...

Sorry about the IGF Princess. Have you contacted Novartis, the makers of Sandostatin directly? I don't know if they would be able to help you. I've read Pfizer has a bridge program for Somavert to help U.S. residents, but I don't know if these companies are able to help anyone in other locations. Have you thought of clinical trials? Good luck.

Princess said...

Thanks very much, Alecia and Jenny. Appreciate your support. Yep, it's pretty scary to have limited options. But, somehow, I'm not yet desperate for further treatment as I still feel fine overall. True, my IGF is up; and my appearance hasn't returned to how it was prior to acromegaly, but I'm just thinking positive...

But will look into Jenny's suggestion to check with the drug companies.

Alecia, my little one is turning 7 months already. She's so adorable. Makes me thankful and feel more blessed.

Jean and Al said...

OMG! I cannot believe I found this blogger site. How do I sign up? My husband was diagnosed with Acromegaly last month. His IGF-1 is a 641 and his GH is 3.1. His surgery isn't until next month to take out the tumor... anyway, I have to go scour this site now, but do I have to sign up each time? Thanks for any info out there. I already love this site and have only read two blogs :)

Princess said...

Hi, Jean and Al! Please get in touch with Ellen (polarchip). Good luck with your husband's surgery. It's good you found this blog. I was also so happy meeting these guys (alecia, ellen, jenny, almu, jen).

RealizeTheFuture said...

Hi, I have been researching acromegaly and other syndromes and disease for weeks! This site looks like a godsend where people actually interact!

My endocrinologist suspects I have acromegaly. My IGF-1 value is 193 ng/ml... but my growth hormone suppression test is what makes him believe I have the disease. My results for 0 min, 30min, 60min, 90min, and 2hr are 0.1, 5.5, 4.3, 1.19, 0.31 ng/ml respectively. He says this is quite abnormal and strongly believes I have acromegaly and a pituitary adenoma.

I am to schedule a MRI with gadolinium dye, but researched that dye and found there can be very serious side effects!

This stuff is very scary!!!

I researched and read everything I could find on hGh and acromegaly tests... how are these results? Has anyone else heard of them?

polarchip said...

Hi RealizeTheFuture,

I'm pretty sure all of us (with acromegaly) have had all the tests you're getting, with various results. I wonder if your abnormal results could indicate very early onset of acromegaly, which means your chances of a successful cure through surgery are greater. I hope you and your doctor are able to figure out what is going on.

I have had the MRI with dye several times with no side effects (the liquid is slightly refrigerated, so it feels cool going in!). I hope your MRI goes well and you find out what is going on with your pituitary!!

RealizeTheFuture said...

Thank you for the reassuring words! :) <3

I hope it all goes good for everyone! When I tell people of it they tell me I am over-reacting and there must be some cure or pain killers I could take!