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.
I did a bone density test : have osteoporosis
Did a CTX blood test (bone turnover speed) : speed is too fast. Read that acromegalic patients have a faster bone turnover then average.
If other people here have osteoporosis, what kind of medication do you take ?
The question is if you take medication in order to increase bone density, does it increase the acromegalic overgrowth of bones ?
Second question :
Calcium blood test came back at the upper limit of the norma, despite an almost no diairy, no eggs diet and no supplementation (pills).
And Vit D is low despite a sunny weither and being outdoor most of the day.
Do other people have calcium / vit D abnormalities ?
I wonder if these have to do with acromegaly or only with aging. I'm a 53 years old women, don't take HRT or any other medical treatment.
Thank you.
Did a CTX blood test (bone turnover speed) : speed is too fast. Read that acromegalic patients have a faster bone turnover then average.
If other people here have osteoporosis, what kind of medication do you take ?
The question is if you take medication in order to increase bone density, does it increase the acromegalic overgrowth of bones ?
Second question :
Calcium blood test came back at the upper limit of the norma, despite an almost no diairy, no eggs diet and no supplementation (pills).
And Vit D is low despite a sunny weither and being outdoor most of the day.
Do other people have calcium / vit D abnormalities ?
I wonder if these have to do with acromegaly or only with aging. I'm a 53 years old women, don't take HRT or any other medical treatment.
Thank you.
I too have osteoporosis and last month I was diagnosed with Vit D deficiency with no apparent reason for that. I am taking suppliments for that. My osteoporosis is not that bad and I guess other than Acro age might also contribute to it.
I too was wondering if Vit D decifiency has got anything to do with Acro, at leastt there is no known linkage in the published literature that I seracherd. You anyone else knows about it then please update!
Shirish
I was also diagnosed with vitamin D defficiency.Do you take vitamin D? If yes, how do you feel? I have read post from one member that she didn't feel well after D vitamin, that all bones and joints have started to hurt even more. But I got impression that all the others felt the same or even better.
I never had CTX blood test and bone density test. Are these tests also standard tests for acromegaly patients?
Harmony
Shirish : i'm also surprised to find no research about vit D and acromegaly, as Vit D is a hormon.
Actualy, very low vit D was the first abnormality found on my blood tests before diagnstic of acro.
Harmony : in healthy people, osteoporosis concern women after age 50 (and all very old people), when you loose more bone than you gain because of low hormonal status.
You do an osteodensitometry to mesure bone density.
If it is weak, you measure calcium, vit D and CTX because the most frequent causes of osteoporosis are :
1. lack of calcium
2. lack of vit D
3. too fast bone turnover (a simple blood test done verywhere).
Acording to the results of the tests, you need different medication.
For example I have high calcium but too fast CTX , so i have to begin taking a kind of "glue" for the bones you drink every evening(Sorry I miss the apropriate vocabulary in english :-) , but i don't need supplemenetation of calcium,
It seems fast bone turnover concern male and female with acromegaly, so it's not a bad idea to measure it without waiting for the osteoporosis to show up (meds can stop the process but hardly reverse the density).
Your question conc. vit D : took 2 years ago calcium + vit D pills without problems. Then vit D 100000 without calcium (you drink it) every 3 months. Was fine before somatuline. Than one dose while on Somatuline, with awfull effects (headacks exactly where the pituitary is located, teeths felt like acid was eating them, and more problems. Bad, very bad experience.
Never took vit D since, and levels were fine for a year. Now for unknown reason, level dropped.
thank you for your explanation, I didn't know about CTX. I am sorry that you had such a bad experience with acro meds and vitamin D.
Berthe and Shirish, I can't find any really useful article about this either. Berthe will you start taking vitamin D again? Shirish how do you feel on vitamin D?
Thank you,
Harmony
CTX full name is : C-terminal telopeptide
Link to Wiki page :
http://en.wikipedia.org/wiki/C-terminal_telopeptide
Conc your question about vit D, we are complicate creatures !!!
It's sometimes like a biliard game :
http://en.wikipedia.org/wiki/File:PoolTablewithEquipment-non.jpg
You have to target one ball when you want to hit another one.
Magnesium improve vit D absorbtion. Took it 6 months last year (Mag + B6),was a good experience, felt generaly better and vit d levels were great without supplementation.
So i take again mag + B6 and let the summer's sun provide the vitD. Will check levels in 6 months.
Take care,
Berthe
less cigarettes, less coffee (and tea), as they "swallow" your vit d.
...Breath and relax ?
how interesting. I take Mg and B6 too. Thank you for your reply :-)
Harmony
Do you tolerate it well ?
I was prescribed the quite new Protelos, but people report lot of severe side effets.
Hi Harmony- My fatigue has imporved a bit after I started talking Vit D3. In general I would say if there is a deficiency then it needs to be corrected becuase it is not only linked to the bones but there could be so many other diseases that can be linked ( though not causaly related) to the deficiency
Berthe I have talked to my endo today and he has suggested that same as is your plan: in the summer time to sunbathe in winter I'll start to take vitamin D.
Harmony