Not doing too well....

Newcomer introductions, personal anecdotes, caregiver issues, lab results, and n=1 experimentation.
bwaters
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Re: Not doing too well....

Postby bwaters » Sun Jan 20, 2019 1:49 pm

Hi Julie,

I met with my endocrinologist this past week to over my lab results with over 2 months of treatment with cabergoline for my pituitary adenoma tumor. My prolactin is down from 77 to 9.9 (good!) and my testosterone levels were improved though still not what they should be based on the Bredesen numbers - I was at 466 Total T and 4.66 Free T - the free T is definitely too low and my doctor told me that the Free T is a better overall measure of testosterone. She told me I will be on the cabergoline drug treatment for 2 years with 6 month blood work follow up visits and then an MRI at the end of two years to check on tumor shrinkage. I am having mild side effects from the drug - morning headache, mild constipation and minor PM dizziness and a lowering of my hemoglobin and iron levels to the point that my internal medicine doctor says I am mildly anemic. Cabergoline has many side effects - I am not experiencing more severe ones like some people. What I am most interested in ( and could not find information on) is whether this drug may have cognitive side effects - there are some rare psychiatric side effects but nothing listed on overall cognitive functioning. My concern is for the impact of the drug on my following the Bredesen protocol - I have been on the protocol for a year now and have been doing very well until this road bump with the pituitary tumor. I have added a morning iron pill to my supplements - 29mg in the AM and 65mg in the PM. Along with my APOE4 genetic risk I also have both gene variants of hereditary hemochromatosis which adds to the Al;zheimer's risk and may have something to do with my iron issues. Along with the testosterone and prolactin and CBC tests I also had my homocysteine tested and I was disappointed with the result after I had adjusted my B vitamin regime following Dr. Bredesen's recommendations. My homo was at 11 - the past two tests were 11 & 12 - so this is still too high so I am going to try additional supplementing with glycine betain. Otherwise, all of my other labs and numbers are great - my diet and exercise is great - my energy level is fine and I addeda PM melatonin 5mg which has worked great for my sleep routine. So, I am mainly interested in any further info on the cabergoline drug I'm on if anyone has further experience with it related to cognitive risks.

bwaters
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Re: Not doing too well....

Postby bwaters » Wed Feb 06, 2019 2:33 pm

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Re: Not doing too well....
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Postby bwaters » Sun Jan 20, 2019 2:49 pm
Hi Julie,

I met with my endocrinologist this past week to over my lab results with over 2 months of treatment with cabergoline for my pituitary adenoma tumor. My prolactin is down from 77 to 9.9 (good!) and my testosterone levels were improved though still not what they should be based on the Bredesen numbers - I was at 466 Total T and 4.66 Free T - the free T is definitely too low and my doctor told me that the Free T is a better overall measure of testosterone. She told me I will be on the cabergoline drug treatment for 2 years with 6 month blood work follow up visits and then an MRI at the end of two years to check on tumor shrinkage. I am having mild side effects from the drug - morning headache, mild constipation and minor PM dizziness and a lowering of my hemoglobin and iron levels to the point that my internal medicine doctor says I am mildly anemic. Cabergoline has many side effects - I am not experiencing more severe ones like some people. What I am most interested in ( and could not find information on) is whether this drug may have cognitive side effects - there are some rare psychiatric side effects but nothing listed on overall cognitive functioning. My concern is for the impact of the drug on my following the Bredesen protocol - I have been on the protocol for a year now and have been doing very well until this road bump with the pituitary tumor. I have added a morning iron pill to my supplements - 29mg in the AM and 65mg in the PM. Along with my APOE4 genetic risk I also have both gene variants of hereditary hemochromatosis which adds to the Al;zheimer's risk and may have something to do with my iron issues. Along with the testosterone and prolactin and CBC tests I also had my homocysteine tested and I was disappointed with the result after I had adjusted my B vitamin regime following Dr. Bredesen's recommendations. My homo was at 11 - the past two tests were 11 & 12 - so this is still too high so I am going to try additional supplementing with glycine betain. Otherwise, all of my other labs and numbers are great - my diet and exercise is great - my energy level is fine and I addeda PM melatonin 5mg which has worked great for my sleep routine. So, I am mainly interested in any further info on the cabergoline drug I'm on if anyone has further experience with it related to cognitive risks.

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Julie G
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Re: Not doing too well....

Postby Julie G » Thu Feb 07, 2019 7:36 am

My prolactin is down from 77 to 9.9 (good!)

Congrats on your reduced prolactin level, my friend! Great news :D Unfortunately, I'm not well versed on the side effects of Cabergoline, but would encourage you to do a robust search using terms like "Cabergoline + cognition + dementia."

Tell us what else you're doing to reduce homocysteine- B12, folate, B6, choline, TMG?

I'm curious why you decided to add an iron pill with your genetically increased risk for hemochromatosis? Do you have low ferritin? As I recall higher ferritin levels are associated with inflammation, heart disease and AD...

Kudos on your good energy level and overall feeling of wellness.

bwaters
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Re: Not doing too well....

Postby bwaters » Sat Feb 09, 2019 8:30 am

Hi Julie,
I'll keep looking for information on cabergoline but so far I have found nothing to suggest risk for dementia and cognition. I have cut back on iron supplement in the last week to help with constipation side effect - looks like I will just have to manage the side effects with more dietary fiber since there is not much I can do about the lowering of hemoglobin side effect. My form of both hereditary hemochromatosis genetics has a secondary gene structure that does not lead me to high iron - my sister has the bad secondary gene and has the disease - mine still puts me in the risk factor but is more dormant - I suspect though that having those gene variants may actually be why I am susceptible to the side effect of low hemoglobin with the cabergoline treatment. While my doctor says I am now mildly anemic, I still have great energy level for my exercise routine and activity level. My main concern now is the long-term impact of being on cabergoline treatment - some people with these tumors have been on the drug for years to keep their prolactin levels in check and lower the tumor growth. As far as the homocysteine goes, right now I have been following the Bredesen suggested supplement levels - I take B-12 Adenosylcobalamin 1000mcg (1 Daily), B12-Methylcobalamin 1000mcg (4 daily-2AM & 2PM for 4000 mcg), Methyl-Folate 400mcg (4 daily-2AM & 2PM for 1600 mcg) and Glycine 1000mg (1 daily). I have been on those for the last 6 months and my homocysteine has gone from 11 to 12 back to the recent reading of 11 so I have ordered glycine betaine (trimethylglycine) from our food coop and will be trying to see if adding that works. I already eliminated all nuts and soy from my diet due to kidney stone issues and I suspect that my consumption of organic meats and eggs may be part of the problem. Because I have to keep my oxalate consumption low I primarily eat cauliflower, onions, mushrooms, white pepper, nutritional yeast, only organic goat cheese for dairy, organic grass-fed meats, plantain chips (cooked coconut oil), organic eggs - my diet is more limited than the Bredesen Gundry protocol because I have to keep my oxalates in check and yet have some foods I like to eat. I have maintained my optimum weight for months now with really good lab numbers in every category except the homocysteine and testosterone levels - I now know the problem of the tumor is affecting the testosterone and since that level has come up a little I'm less worried about it compared to the high homocysteine - so I'll see what happens with adding the trimethylglycine. Otherwise, the impact of being on t what I call the Bredesen-Gundry Alzheimer's Prevention Protocol for over a year now has been tremendous for me and I am hoping that others read the post and have any other suggestions for me. I am deeply appreciative of all the suggestions and help I have received from this support site.

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Julie G
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Re: Not doing too well....

Postby Julie G » Sat Feb 09, 2019 11:56 am

I suspect though that having those gene variants may actually be why I am susceptible to the side effect of low hemoglobin with the cabergoline treatment. While my doctor says I am now mildly anemic, I still have great energy level for my exercise routine and activity level.

Ah, I missed that from your last post! Thanks for the correction.
As far as the homocysteine goes, right now I have been following the Bredesen suggested supplement levels - I take B-12 Adenosylcobalamin 1000mcg (1 Daily), B12-Methylcobalamin 1000mcg (4 daily-2AM & 2PM for 4000 mcg), Methyl-Folate 400mcg (4 daily-2AM & 2PM for 1600 mcg) and Glycine 1000mg (1 daily).

Ugh, that’s a lot of supplementation... with disappointing results. I could be wrong, but I’m reading his instructions to mean a total of 1mg of B12 per day from 2 different sources. FWIW, I think TMG, not pure glycine is the one that is supposed to help with homocysteine. How is your choline intake? Increasing choline through diet or supplementation is often helpful. Have you seen our wiki section on methylation? It may help you pinpoint specific areas to work on so that you can consider backing off parts of your current routine.
Otherwise, the impact of being on t what I call the Bredesen-Gundry Alzheimer's Prevention Protocol for over a year now has been tremendous for me and I am hoping that others read the post and have any other suggestions for me. I am deeply appreciative of all the suggestions and help I have received from this support site.

Keep up the great work! :D

bwaters
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Re: Not doing too well....

Postby bwaters » Thu Feb 14, 2019 7:19 am

Hi Julie,

Thanks for the suggestion. I have started to look over the website information on homocysteine. I have started on TMG - I am following the Bredesen suggested amount of 500mg a day - the supplement comes in 1000mg tabs so I am splitting the pills - the bottle recommendation is for 1-3 tablets TWICE daily - way over the Bredesen amount but I will follow the 500mg for now and then retest my homocysteine level in 3 months. If necessary I could go to one tablet a day and double the amount but I think the lower amount for now is better with the rest of the supplementation I'm doing.


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