To be quite honest I think we are uniquie people with a sneaky conditon that likes to give the medical proffesion a run for their money...My hospital was discussing that they like to do the test very early morning..With the drugs people are given different time doses Ive noticed with other members..My doctors give mine to the day four weekly ...I have had this all the way through been on injections from the start..My injections as I go towards my next jab..I know Im running out of battery life because everytime in my sleep I shake weird but Ive done this every time...My results went higher but my tumour was shrinking ..Myself I more interested in what my pit functions are doing against levels ..Stress other medications ..our medications are mixed we have so many hormones going on that are trying to balance functions mood heat etc..So it never surprises me that its not the same

Part two lol had to go to work so didnt finish off..Ledgy can I ask a couple of questions...Cabergoline..did they do a heart test on you for this..Also some people who are on this have said theyve noticed being more depressed mood swings..Have you noticed this..Im on somatuline autogel ..I been find my side effect seems to be I went hyper as I was going through the doses..Im not so bad now...What do you think of the new drug?

Hi JokeyJ

Yes, i take cabergoline, the minimum dose which is .25 two times a week. In the clinical trial they do monthly ekgs and no problems so far. I definitely notice lots of side effects with cabergoline including dizziness, thirst, fatigue, mood swings and a lack of mental focus. I cannot handle any kind of stress or it gets worse.....i actually experimented with reducing the dosage by cutting a half of a pill into quarters!! I'll take it as long as i can and then just stop taking it for awhile.....

As to the new drug, pasireotide (assuming im on it!), i do not have much problem with the side effects and i am feeling better, its just that now my igf seems to be going back up while my hgh is within normal limits.

When I was pronounced "cured" by the neurosurgeon at my 3 month post-op visit, the endo came along behind him and used almost word for word the caution that JJ is giving. She said that acromegaly is a sneaky, nasty disease that has to be watched closely. We have another member in this acrofamily who told me the other day that no matter what she does, her levels seem to start climbing after about 4 months. Now it's pegvisomant (somavert). In the beginning a new drug or new dose, keeps the level under control, then it starts to spike after about 4 months.. There may be something about this acromonster where we will have to watch out for that. Best of luck to you Ledgy.

Rose @----}-------

Hiya Ledgy,

I'm terribly sorry for having taken so long to reply.

These are my thoughts - and of course, they are just my opinion, I could be wrong (my wife tells me that I am plenty of times, and of course, she is right.).

Well, IGF-1 is generated mainly by the liver, but also in other parts of the body too. People with acromegaly often have larger submandibular glands (just under the jaw) and this produces some IGF-1 too, but as do the muscles.

Anyhow, as we know IGF-1 is produced as a response to GH. The more GH in the bloodstream, the higher the IGF-1. It's important to note though, that the response to GH is not only its instantaneous concentration, but also how often it is produced.

GH is released into the bloodstream in pulses. These pulses are as a result of releases of GHRH (Growth Hormone Releasing Hormone).

GH has a short half-life in the bloodstream (ie. the time it takes for it to degrade to half of its original potency), of around about 15 minutes.

It could very simply be that you are generally getting more pulses of GH into your bloodstream. Stress, for example, results in a spurt of GH.

Another reason could simply be that the GH is not clearing out of your system as quickly, so the liver has longer to respond to it by producing more IGF-1. If you've stopped taking diuretics, or if you find yourself not drinking enough fluids, or your metabolism has slowed down, then this could be a factor.

Other factors can cause an increase in levels of IGF-1. People who are overweight, and people who eat too much tend to have a higher gearing of GH to IGF-1.

Funnily enough, it's been shown that people who have some alcohol before bedtime have a lower IGF-1 reading.

There is the whole business of the IGFBP3 (IGF Binding Protein). Basically, the IGF-1 hitches a ride around the bloodstream on a Binding Protein - it then detaches itself from it to transfer into cells. Some things can alter the balance of IGFBP3, and therefore results in a higher amount of available IGF-1.

Another reason for an increase in IGF-1 is one that we all fear - that there is something else producing it. Malignancies pump out growth factors. Obviously, this does not bear thinking about.

It is possible to develop antibodies against somatostatin analogues, but I would have thought that would be shown in you GH values, so it's probably not that.

Naturally, having the injection over a week late will not have helped one bit. It could well have been the reason for the higher value this time round. There is a bit of error in the measurements too. Your next reading may be back in the normal range again.

Anyhow, hopefully that's given you a few ideas!

Trys

"Funnily enough, it's been shown that people who have some alcohol before bedtime have a lower IGF-1 reading." Trys has provided the first touch of truly good news I have read since joining this site! :-)

Mysterysolved oh so LOL..When I read what you wrote

Trys,

Thanks for the thoughtful reply...i will look into these points! I hope you are doing well post op!

Ledgy

JOKEYJ,

They are doing an EKG on me every three months to watch for any signs of heart issues related to either cabergoline or pasireotide/sandostatin. So far the news has been good. Also, they take a careful look at my vitals before and after each shot. Everything has been ok. Do you think i need additional or different kinds of testing?

I definitely have had bad reactions to cabergoline over the years....including constant dizziness, thirstiness, mental confusion, mental fatigue. I have also struggled with depression. It is difficult to know really whether any of these are a result of the caber, the acromegaly, or just having the disease! I do know that if i stop the cabergoline the dizziness goes away....but its hard to tell.

RE: the pasireotide.....i have had ups and downs but i feel that overall i am doing better....today is a "60-70 per cent" day and i almost never do better than that.....my sleep apnea seems to be getting better, i seem to have less joint pain, i seem to think clearer and have more energy.....but i also have had bad dizzy spells and bloating cramping issues since they increased the dosage.....

Anyway, thanks for asking. Good luck

Ledgy

Ledgy,

Thanks! I'm doing remarkably well post-op. I went for a five mile cycle yesterday and really enjoyed it. I stopped half-way through it and sat on a bench in a park with the birds tweeting and the sun shining. I'm so glad to be alive. I feel very unfit though, and I'm hoping to build up my health and fitness.

I'm on medication for my high blood pressure, but since taking up more exercise it's come down to some very sensible figures.

They drew some blood samples on me last week. That will be my "three month levels". I don't have the results yet. I'm preparing myself for non-ideal results, but remaining up-beat on things in general. After all, every heart beat is a bonus!

Trys
www.acromegaly.wordpress.com