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.
Hi Everyone!
My name is Samantha and my husband, Robert has been diagnosed with Acromegaly.
It all started on 06/24/15 when my husband was woken from a deep sleep with the worst head ache of his life. He has a high pain tolerance, so when he said the words: "take me to the ER now" my heart stopped.
Our local ER is a joke, he had a CT and botched lumbar puncture (spinal tap). CT came back clean and same with the LP. They sent us home with a very unsettling diagnosis of "I don't know".
Robert proceeded over the course of the next four days to be admitted to the ER three more times with lumbar puncture headaches from the bad spinal tap, required two blood patch epidurals. I knew in my gut something wasn't right. On 06/29/15 he started getting delusional, non responsive and tired. I took him BACK to the ER where they refused us an MRI and told me he had the flu. Yes, the flu. I told them they were incompetent and we left.
The next day we went to his GP and she ordered a STAT MRI and sure enough on 07/01/15 we were told that he had a Pituitary Macro Adenoma. We were sent to an endocrinologist locally for a pituitary hormone panel and I immediately got on the phone with UCSF. Based on family experience and my research, they are the best Pituitary surgeons in the country. It took A LOT of work and pushing on my end to get Robert seen ASAP. Originally it wasn't going to be until September and he was getting worse by the second, I wasn't waiting to see how bad he was by September.
If I have learned anything in the past 26 days it's that you HAVE to be pushy and advocate HARD for yourself/your family member because no one cares about your health as much as you. Squeaky wheel gets the grease! In our case we were the wheel that was falling off, so we got the attention.
Robert's IGF-1 came back at 909 - holy acromegaly.
We saw Dr. Lewis Blevins, neuro-endocrinologist and Dr. Manish Aghi, Neurosurgeon at UCSF https://ccpd.ucsf.edu/team.
Robert had surgery two days ago, 07/17/15. We came home yesterday and he is doing well all things considering. We will follow up in 6 weeks and update you all.
My question for you all:
We were vegan for three years (2011-2014). During that time we both thrived mentally, physically and emotionally. The only thing that was failing was that we were dealing with infertility. The IVF doctors suggested we integrate meat and dairy back in. We were desperate, so last August began adding back in grass fed, organic meats and dairy. Looking back the time we started adding animal protein is the same time that Rob's acromegaly symptoms really kicked into high gear. I am trying hard to research the best diet for him but am finding conflicting research.
Now learning Robert's testosterone was SO low, that was likely the cause of our infertility, so we are ready to head back to our vegan lifestyle. Any information you have I'd love to hear.
Thank you everyone and we are excited to be a part of a community!
Best,
Samantha
My name is Samantha and my husband, Robert has been diagnosed with Acromegaly.
It all started on 06/24/15 when my husband was woken from a deep sleep with the worst head ache of his life. He has a high pain tolerance, so when he said the words: "take me to the ER now" my heart stopped.
Our local ER is a joke, he had a CT and botched lumbar puncture (spinal tap). CT came back clean and same with the LP. They sent us home with a very unsettling diagnosis of "I don't know".
Robert proceeded over the course of the next four days to be admitted to the ER three more times with lumbar puncture headaches from the bad spinal tap, required two blood patch epidurals. I knew in my gut something wasn't right. On 06/29/15 he started getting delusional, non responsive and tired. I took him BACK to the ER where they refused us an MRI and told me he had the flu. Yes, the flu. I told them they were incompetent and we left.
The next day we went to his GP and she ordered a STAT MRI and sure enough on 07/01/15 we were told that he had a Pituitary Macro Adenoma. We were sent to an endocrinologist locally for a pituitary hormone panel and I immediately got on the phone with UCSF. Based on family experience and my research, they are the best Pituitary surgeons in the country. It took A LOT of work and pushing on my end to get Robert seen ASAP. Originally it wasn't going to be until September and he was getting worse by the second, I wasn't waiting to see how bad he was by September.
If I have learned anything in the past 26 days it's that you HAVE to be pushy and advocate HARD for yourself/your family member because no one cares about your health as much as you. Squeaky wheel gets the grease! In our case we were the wheel that was falling off, so we got the attention.
Robert's IGF-1 came back at 909 - holy acromegaly.
We saw Dr. Lewis Blevins, neuro-endocrinologist and Dr. Manish Aghi, Neurosurgeon at UCSF https://ccpd.ucsf.edu/team.
Robert had surgery two days ago, 07/17/15. We came home yesterday and he is doing well all things considering. We will follow up in 6 weeks and update you all.
My question for you all:
We were vegan for three years (2011-2014). During that time we both thrived mentally, physically and emotionally. The only thing that was failing was that we were dealing with infertility. The IVF doctors suggested we integrate meat and dairy back in. We were desperate, so last August began adding back in grass fed, organic meats and dairy. Looking back the time we started adding animal protein is the same time that Rob's acromegaly symptoms really kicked into high gear. I am trying hard to research the best diet for him but am finding conflicting research.
Now learning Robert's testosterone was SO low, that was likely the cause of our infertility, so we are ready to head back to our vegan lifestyle. Any information you have I'd love to hear.
Thank you everyone and we are excited to be a part of a community!
Best,
Samantha
I would wait for your post surgery work up rechecking his levels before you start making any big dietary plans. While surgery usually brings some immediate resolutions, it rarely is the end all....enough remaining tumor cells to fill a pin head can still stimulate the pit and cause the same problems. It is quite possible that as a result of the post op work up, your husband may end up on a med regiment that includes shots to get or keep the Acro under control.....and control is what we all shoot for. Residual symptoms are quite common.............
With that said....some patients experience near normal life style after getting the Beast under control. Others experience ongoing mild issues and others (like me) experience "life altering" results. The point being, that we take it day by day and adapt as needed. You and your husband have just started down this fork in his life river.....there will be stretches of placid currents that are easy and there will rapids that test your resolve.........hopefully there won't be any waterfalls.
For now I would suggest that your husband concentrate of recovering from his surgery.....take the time needed, It is our "manly" trait to man up and climb back in the saddle........trust me (speaking from experience), that is a battle left unfought. Recuperate.....physically and mentally. Once you find out what his med regiment will be, then you can start thinking about dietary solutions. I found that keeping a daily journal of issues (pain, headaches, fatigue, limitations, etc., etc.) and dietary intake, helps you discover just how your system is functioning with all the possible new parameters I would be surprised if he didn't find out that things that didn't bother him food wise before will now bother him or just the opposite.....
Unfortunately, you've both have become members of a small club and the Beast is sneaky. We get presents and surprises all the time..........our battle is constant and quite often frustrating...but we can prevail. We're just on a different fork of the river.
Good luck and keep in touch here........this forum is a good place for information or just as an outlet to vent.
I am, also, the wife of someone suffering from acromegaly and a patient advocate extraordinaire. ;-)
Since this is an orphan disease, no stone can be left unturned. While there is a link between diet and IGF-1, I've yet to find anything definitive when it comes to Acromegaly. There was a brief time when my husband was waiting to have his gallbladder removed and we had him on an extremely low fat, high protein diet. He had his levels drawn right after surgery and there was a slight uptick in his numbers. Whether or not this was diet related or from his body healing after surgery, we don't know. Either way, the change in numbers wasn't statistically significant. If you and your husband are healthy and happy on a vegan diet, than that's what I would do. Quality of life is so important. You certainly won't be doing anything detrimental to his health as far as acromegaly is concerned. The infertility is a separate issue and I'm not familiar with that.
Like your husband, my husband had very high IGF-1 (1128) and very low testosterone. His testosterone did improve after surgery, but it's still on the low side. His doctor discussed using testosterone therapy, but felt that would elevate his GH, so we've chosen not to do so. With fertility being an issue with you and your husband, you might choose differently.
On a positive note, your husband is still young and you've caught this early. You are way ahead of the curve on that. My husband's acromegaly was long standing and severe. His numbers still aren't were they should be and we've started medication. Because of the long standing disease he has damage that can't be reversed, but his quality of life has improved drastically since before surgery.
If I had to give one piece of advice, it would be find doctors that are A. the top in their fields and B. make sure they are willing to listen to you. I have spent countless hours researching every aspect of this disease. It is not out of the ordinary for me to bring them pages of research that I've found. It is so important that they are willing to hear me out and actually put credence in what I have to say. While they have many patients, I only have one husband. I respect their expertise and need them to respect that this is our life.
Good luck on your journey and keep us informed of his progress.
I'm not fluent in english, please forgive the mistakes.
Had a diagnostic of acromegaly 7 years ago, and after a surgery who failed t cure me and 3 months of somatuline injections who had too many adverse side effects, decided to stay without medications, and focus on diet. And of course continue to monitor (run tests to check everything).
I am on a gluten free, dairy free, low added sugar diet. The only medcaton is a daily pill of probiotic.
Out of the long list of symptoms i had, most vanished, .
The only symptom of acromegaly who remain is igf-1 level at almost twice the maxima, and sweelling extremeties. Shoes are still 1 size bigger than they should, all other oft tissues are swelling in the same proportions.
For the rest, i came back to normal life, last blood tests were in june 2015, showing all constants (except growh hormon) are perfectly normal. IGF-1 continue to lower, more quickly than expected just by aging (from 652 to 394 in 5 years).
With now almost 7 years of experience, everytime i break the diet (travelling, temptation...), acromegaly symptoms come back on the next day : extreme fatigue, painfull articulations, foggy brain, swetting, moods etc and last for few days.
I ignore what is the connexion between this diet and GH, Hormons have a complicate mode of action, the connexion could be undirect. But as long as it does the job, i'm happy !
It took about 4 months from the beginning of the diet to see improvements, mostly because of the time needed to learn to detect hidden gluten in supermarket products.
Last remark is that we all have the same pathology, but don't always have same reactions : no garantee that this diet will have exactly the same effect on other patients.
Good luck,
My amazing neighbor who is a nurse practitioner just sent me this website. There is a tiny bit on acromegaly, but a lot on IGF-1 and cancer, as well as Diabetes. Thought I'd pass it along. I have spent hours reading at watching videos, it's awesome!
www.nutritionfacts.org
I'm sorry to hear about the difficult journey you've both had. The good thing is that Robert's condition was not missed and that it was diagnosed and that he has had surgery.
I had an operation some five years ago or so, and I'm still in remission of acromegaly.
Robert's low testosterone is probably not the cause of you both being unable to conceive. The IVF clinic would also look into the mobility (how quick they are) and morphology (how handsome they are ;) ). Infertility is a highly complex issue - and as this is a public forum it may be better to discuss this aspect in a more private setting - (especially as you've given both your names, and the name of a physician in a particular area).
I don't know much about veganism apart from not eating any animal products. I know that Vitamin B12 is only produced by animal products, and a deficiency in this can be life threatening.
I imagine the most sensible course of action would be to eat a normal balanced diet. Acromegaly presents itself with a higher rate of bone turnover, so in the absence of dietary available calcium would result in lower bone density. Robert's physician may request a DEXA bone scan to assess this.
Robert will be a particularity delicate state as he recovers from the operation. I'm sure you'll be giving him lots of care and attention especially over the next few months.
Hope it goes well in his recovery, and in your journey in trying to conceive.
Trys
www.acromegaly.wordpress.com