I personally don't believe that any of the alternative treatment is going to be effective with acromegaly.I think this condition is just too serious to take the risk of trying unproven alternative treatments. Just knowing how complex the endocrine system is. And you have this tumor produces an excessive growth hormone. And there's a sort of cascading effect of that including the IGF. Although in general I'm not opposed looking at some of the alternatives to traditional medical treatment. I take natural anti inflammatories rather than the nsaids, but there a fair amount of studies behind natural anti inflammatories to support their usage. That's my 2cents . Of course I was in the position where they couldn't take any of the medication successfully. Well then what the heck you have nothing to lose then I go for it and try it is a natural and see if it helps. -film-

thanks furkidmom, what natural anti inflammatories do you use? this could help me too as I would like to switch from nsaids. TIA

I take White Willow, Boswelia (sp?), Pine Bark. I also take Grape Seed and Sam-E THere is a good article here: http://www.medscape.com/viewarticle/553966_6 You have to sign up for a free account, but it is a good resource site.

Hi Sunny,
I took curcumin but it hasn't helped. Only first IGF-1 reading was great (a bit lower) all the others were higher and IGF-1 was slowly creeping up. In March this year I had GK and I take Somavert 40mg daily. About your question which drug is better Somavert or Somatuline: I take Somavert because other medications didn't work for me or side effects were too bad to tolerate them. So Somavert was and still is the best option for me. Regarding decreasing IGF-1 is Somavert in my opinion the best medication and the downside of Somavert is that it doesn't prevent growth of tumor.

Good luck and take care,
Harmony

I am the one who has been on the vegan diet with my husband. Yes, I do believe it helped drop his IGF 1 number but not enough. So, when the doctor suggested the cabergoline I went for it. As AworriedWife said, if your IGF 1 level is above normal it could be damaging your body. So, do everything to get it below normal.

Last year there was an English tv show by Dr Robert Mosley which showed that the 5/2 diet does reduce IGF1 in people without Acromegaly but whether it works for us I don't know. I tried doing it a few months ago but found it a bit hard however might have another go at it soon. I recently started taking turmeric capsules for their anti-inflammatory properties but so far no real change. I would be surprised if they did anything substantial for IGF1. My daughter had en elevated IGF1 level, but as far as we know not Acromegaly and she reduced her level (42 to 35) by eliminating all refined sugar and fructose. I cut out most sugar last year but found the diet without fruit too dry for me. My IGF1 level has remained stable but above the maximum recommended.

I do think that for our general health we should eliminate refined sugar and gluten. By doing this I have solved my constipation problem that was getting rather severe. It won't "cure" Acromegaly but by functioning better we will be better able to cope with it.

Hi Aztreasure,
I'm one of the few people (very few) who have been able to get myself into a biomedical remission of Acromegaly after surgery was unable to provide cure.

A few companies like endo pharmaceuticals and docs have studied me but I admit even though we know what Ive been doing has worked, I have not seen any true push by the medical field to look further into alternative treatments. We established it worked not only because my GH and IGF-1 normalized and symptoms abated but also I went off my "protocol" as a test and within a month my levels rose. They suggested i take THE medicine & I decided to go back on my protocol. It's been 5 years, Im still in a bio-medical remission.

I confess my training is as a psychologist so I was very familiar with understanding research, a bit more confident to stand up for my beliefs & my specialty was/is medical navigation & understanding how & why decisions are made. So that probably helped a lot :-)

Im brand new on Dailystrength and actually came to look at a different disease but decided to take a look here.

I don't feel comfortable giving professional medical advice per say in this forum but Im happy to share my experience. Research outside the US, such as in Canada, showed a lot of promise using Estrogen. Prior to deciding what to do (i was considering proton radiation) I decided to freeze my eggs and that led to a high dose of estrogen given. I studied the HPA-axis and interviewed over 100 patients with Acromegaly and associated pituitary disease and I found a pattern I thought substantial in stress histories both in formal acts of stress & handling of stress, so I got myself on anti-anxieties and practiced meditation. All tumors & disease seem to have an initial origin of inflammation so I was placed on a high dose Motrin to off-set the inflammation. Lastly Methadone. In Heroin addicts, the HPA-axis gets blown out and I realized that when they went on a maintenance dose of Methadone their HPA-axis functions very frequently restored (It's not the heroin that causes the breach of function, it's the constant stress searching & needing the drug/high that seems to cause the impairment to begin with.). I also found acupuncture to be excellent and did it 1-2x a week for the first two years. Chinese medicine is very hormone based and for me they are excellent at regulating such.

If you think of Acromegaly or any pituitary disease for that matter one has to recognize that the pituitary gland had to become overactive. So the question is why? When someone has cancer & they are able to remove tumor, science tells us time & again that our bodies have the ability to kill off remaining cells. In fact they believe that everyday we are exposed to small cancer cells & our immune system kills them off. Thus when I developed Acromegaly I sought out an understanding for the "immune system" of the Pituitary. I personally believe it is extremely connected to our stress cycle, sleep cycle, and our fight or flight mechanism. Thus my focus was on calming that system & helping it return to a homeostasis state.

For me, like probably all of us, I remain with what I call a broken thermostat. Meaning if I get a bad flu & a fever, experience a major stress etc, like "normal people" my GH level shoots up but in me, it stays up a bit longer than it should, however it eventually returns back to normal. The blood labs of course speak louder than anything I can share and for me this methodology or protocol has worked well.

As for your specific mentions, things like Tumeric have been used for years to treat tumors just not in the US generally. Most homeopathic practitioners believe strongly in the power of turmeric and studies show it has good efficacy for reducing joint associated pain, so thats a good place to start for symptoms. I don't know about the protein. Protein studies strangely tend to suggest that higher doses of protein lower inflammation, thus one would think ppl like us should eat more, but I equally have found that reducing my protein in terms of meats & poultry have helped a lot with symptoms. Again, my science sense is that those proteins are high in hormones now and that fruits, veggies and things like clean fish are simply lower in triggers for us with pituitary diseases.

I find anything you can do to lower your body temp and decrease inflammation is a positive towards decreasing symptoms. That does include decreasing stress, keeping your weight in check and making sure to stretch your body in the morning to ease into the day.


Anyway, It is nice to find you all here. Im so sorry to read of the struggles. I have never had the traditional medications nor radiations so when I started my protocol my body was very pure. Whether correct or not I think that may have helped.

BecauseIKnow, I think your post is gold. Thank you. I'm waiting to find out if I have a pituitary problem; what I do know is that my stress response is way, way too hair-trigger and has been since childhood (...because of childhood, I'd say), and I had no idea how extreme and constant my anxiety was in comparison to other people until I was until my mid-twenties. I started to work on it then, but I've still got a ways to go to reshape the automatic responses. So if I've got something wrong in the pituitary department, it would certainly fit with your hypothesis.

Thank you BecauseIknow, great information! I would like more details, as I am on a search for healing myself. I sent you a message, in hopes we can connect. All the best.

I was diagnosed with Acromegaly at 17 years old. What brought me to my PCP in the first place was the fact I was producing milk even though I wasn't pregnant. She ran some blood tests and ordered an MRI because I had elevated levels of prolactin. She discovered I had a macro adenoma, about 2.5cm, on my pituitary gland and referred me to an Endocrinologist. He ran some blood tests and found that I also had elevated levels of IGF-1 and GH. I was then referred to a neuro surgeon at MGH in Boston, Massachusetts. I went on to have 2 transsphenoidal surgeries, both in my first year of college, unfortunately there was residual tumor around my optic nerves and carotid artery. I went on to receive medical therapy by means of Octreotide and Somatuline. Both of which cause adverse reactions. I ended up having proton beam radiation in attempt to lower my IGF-1 and GH. I am now 29, I still have acromegaly, still have elevated levels of prolactin, I have been on cabergoline, Somavert, and I need to take replacement thyroid medication as I now have an under functioning thyroid due to the radiation. I suffer from chronic headaches that I use medical marijuana for. My bite has changed a lot. I now have TMD, my feet have increased in size, I've had to cut rings off my fingers several times due to increasing size/swelling. I have exhausted just about every option as far as medication is concerned. My neuroendocrinologist suggested a craniotomy to attempt to remove the remaining tumor but I dismissed that idea immediately. I'm exhausted constantly, I'm 120 lbs and sweat like I'm obese with little to no activity. I am desperate for relief but I'm losing hope in my recovery. If anyone has any suggestions as far as herbal supplements or homeopathic remedies, I'm open to try anything at this point.

I'm in the middle of laboratory testing with an endocrinologist. One of the incidental findings is an IGF-1 reading of 435. It seems that I have acromegaly. I plan to treat this naturally - vegan or ketogenic diet, raw foods, anti-cancer herbs and supplements, and positive thinking. Will work with a naturopath to make a plan. My symptoms are newly diagnosed diabetes, high blood pressure, and fatigue. I will wait and see if things improve over time.

@naturallyheal are u gonna attempt to try any meds at all. At least caberholine?

@Jameela. No, I'm not going to try any meds. My second lab was IGF-1 was 314. I'm still getting a confirmatory results on the acromegaly. Will post an update.

Ok keep me posted

@Jameela
I’ve had confirmation on acromegaly from my OGTT labs now. Looking at my photos, I’ve probably had acromegaly for maybe 20 years. I’m 53.

I am going to try a natural healing approach to acromegaly - one year at a time. I don’t believe in suppressing symptoms and want to address the root cause of illness. Natural healing approaches may not always work, but I’ve been able to reverse health problems in the past using natural healing.

This is not medical advice. Individuals should consult their doctor, their naturopath, and do their own research. Following medical recommendations can make a huge difference in the course of this illness including normalizing life expectancy, but it doesn’t work for everyone and there are also potential risks and side effects.

Here's what I learned from researching the web and what I will be trying, A few people have said they were able to completely reverse pituitary adenomas over the course of a few years using by (a) a raw foods diet and positive thinking, (b) frankincense oil or (c) cannabis oil. For the latter two (b & c), the women had microadenomas. The woman with the raw diet (a) wanted to avoid surgery in order to not become dependent on medications. Other herbs said to reduce tumors are curcumin (found in turmeric), Reishi mushroom (recommended to shrink brain tumors) and green tea.

Along with herbs, your foundation should be a healthy lifestyle in which you drink plenty of water to flush toxins, address any stressors or emotional issues with therapy or self-healing, and eat a healthy diet. IGF-1 is said to be reduced with: intermittent fasting or caloric restriction (work with a health practitioner), lower meat or protein diet (such as, mostly vegan or vegetarian), exercise. Definitely avoid sugars, white flours (if not, all gluten) and processed foods. I will avoid dairy, minimize carbs, and eat a high proportion of raw and whole foods. Other overall health boosters include castor oil packs (heal liver), apple cider vinegar with a glass of water (helps digestion and nutrient transport), fresh pressed vegetable juices and berries (anti-cancer properties).

This is what I researched – not medical advice – just so you know there are a lot of natural approaches out there. I believe people should follow what seems right to them and consult appropriate health practitioners– whether it’s the medical route or the natural approach or some combination or transition of either. Natural health approaches might also have unintended side effects or potentially not be compatible with certain medications, so it's helpful to consult with a health practitioner (medical, naturopath, etc) or research the remedy, as needed.

I’m taking it step-by-step, just trying to incorporate some healthy approaches that feel do-able to me right now. After 6 months or a year, I’ll test my IGF-1 to see how things are progressing. At any time, I know that I can go with a medical treatment. I am also paying attention to how my body and symptoms change. Good luck with whatever you decide to do in your healing and don't let yourself be pressured by anyone!

There are other natural health resources including: ‘Cancer Tutor’, ‘The Truth about Cancer’ and a Facebook group: ‘Cancer Cures and Natural Healing Research Group’. You can look them up.