Prolactinoma?

[LuMonty]

I won't be able to get my head scanned again anytime soon, but here's a quick rundown:

My prolactin has been high for almost a decade and got worse on risperidone. When I had an MRI about 5 years ago, there was a shadow on my pituitary. No action was taken and my concerns were ignored.

I've been dealing with bulging eyes, headaches, vision disturbances (misdiagnosed as hallucinations; I know the shadows and such aren't distinct "real" objects), no sex drive despite being in my 20's, gynecomastia, and a lack of drive in general. Also, other systems seem affected, as I'll lose balance or muscle control at random times. When the bulging eyes are the worst, tinnitus gets really bad but over the years as become constant at a low level.

Other than dopamine agonists, what can I take to at least control the symptoms? The problem with the agonists is that they're expensive and for now at least, make me very sleepy. They do work and strongly reduce symptoms for a few hours in very low doses. The other problem with them and anything to increase T/DHT is that I'm just getting my calories to consistently be 2500 without other issues I've been having. I can't keep up calories well enough to consistently get B vitamins, D3, etc. T3 has no real effect on me, except one time I accidentally took a bunch and that ended poorly. I've tried adding sugar but that ends poorly as well, with or without any kind of supplement.

Is there something cheap and/or safe I can take/do? I'm trying caffeine for a viral problem and it helps for both. But my tolerance is still very low.

I realize without proof of the problem some of you may not feel comfortable making recommendations. I can understand that. I also understand that I'm not leaving much to work with in terms of suggestions.

Before I forget, my diet right now is meat prepared in coconut oil, cheese, milk, any ripe fruit, and any highly processed starch. There just isn't enough ripe fruit at a good price where I live to meet calorie needs. I drink OJ as cravings go which can be a lot in a day or none at all. I was getting waterlogged with too much fruit/OJ/milk and milk seems to be the most important for my health right now. I have Dr Pepper and coffee with milk and sugar on occasion.

 

[Kratos]

What's your prolactin level?

 

[LuMonty]

What's your prolactin level?

Last time I had it done, I had to play 20 questions to find out. All I know is it's 32-38. First time I had it measured it was 16 and I was 16. I'm 26 now.

 

[redsun]

I won't be able to get my head scanned again anytime soon, but here's a quick rundown:

My prolactin has been high for almost a decade and got worse on risperidone. When I had an MRI about 5 years ago, there was a shadow on my pituitary. No action was taken and my concerns were ignored.

I've been dealing with bulging eyes, headaches, vision disturbances (misdiagnosed as hallucinations; I know the shadows and such aren't distinct "real" objects), no sex drive despite being in my 20's, gynecomastia, and a lack of drive in general. Also, other systems seem affected, as I'll lose balance or muscle control at random times. When the bulging eyes are the worst, tinnitus gets really bad but over the years as become constant at a low level.

Other than dopamine agonists, what can I take to at least control the symptoms? The problem with the agonists is that they're expensive and for now at least, make me very sleepy. They do work and strongly reduce symptoms for a few hours in very low doses. The other problem with them and anything to increase T/DHT is that I'm just getting my calories to consistently be 2500 without other issues I've been having. I can't keep up calories well enough to consistently get B vitamins, D3, etc. T3 has no real effect on me, except one time I accidentally took a bunch and that ended poorly. I've tried adding sugar but that ends poorly as well, with or without any kind of supplement.

Is there something cheap and/or safe I can take/do? I'm trying caffeine for a viral problem and it helps for both. But my tolerance is still very low.

I realize without proof of the problem some of you may not feel comfortable making recommendations. I can understand that. I also understand that I'm not leaving much to work with in terms of suggestions.

Before I forget, my diet right now is meat prepared in coconut oil, cheese, milk, any ripe fruit, and any highly processed starch. There just isn't enough ripe fruit at a good price where I live to meet calorie needs. I drink OJ as cravings go which can be a lot in a day or none at all. I was getting waterlogged with too much fruit/OJ/milk and milk seems to be the most important for my health right now. I have Dr Pepper and coffee with milk and sugar on occasion.

Yeh I didnt see a single mention of meat consumption for starters. Iron, zinc, B6, tyrosine, phenylalanine all highly bioavailable and abundant in red meat are necessary in reducing prolactin. Dopamine opposes prolactin , increasing dopamine will reduce prolactin at least enough until you know for sure if you have a pituitary tumor. L-tyrosine pills(I use 500mg ones) taken on an empty stomach with some sugary drink(to increase insulin to help tyrosine pass the blood brain barrier to the brain) should help get the building block of dopamine into the brain.

You need iron and folate to turn tyrosine to dopa then P-5-P(active B6) to make dopamine. If your ferritin levels are high enough, you can stick to food for iron(heme-iron is preferable) and as for folate make sure you have good sources of folate in your diet.

short version: High tyrosine diet(red meat, certain cheeses are generally very high in tyrosine) as well as supplementing l-tyrosine spread throughout the day on empty stomach, 1500mg being a good start point. I do 1000mg in the morning and 500mg later in the day as an example. Consider good heme iron source and folate source in diet, supplement with B6 as pyrodoxine hydrochloride or pyrodoxine-5-phosphate and each meal with protein. If iron deficient, that should be remedied. Zinc is necessary for T production, consider supplementation because from what I can see in your diet you definitely arent getting enough.

 

[Kratos]

Bulging eyes might be a hyperthyroid problem, but the rest sounds like a serotonin problem. I have the same issues except for bulging eyes and my prolactin is always in the 12-20 range but I have not gotten my brain scanned though.

 

[LuMonty]

@Kratos Noted. If I hadn't had escalating test results for a decade I'd go with that, would certainly be easier. I've tried metergoline, which had almost no effect on the me. Did help digestion a bit, but that was all after 80% of the bottle. Haven't touched it since.

@redsun To be more specific about the food I listed, on a typical day I have at least one serving of red meat each meal. I typically have 5 servings a day which is easily 20+mg of zinc and 3000+mg of tyrosine. Plus cheese three times a day, typically 2 oz each serving; from what I'm looking at I'm averaging 1800mg tyrosine just from cheese. For more iron than what those give I also have dark chocolate, 1-3 oz a day, I negelcted to mention that. I did forget to mention that I have baked beans 2-3 times a week, mainly for digestive purposes. I'm getting 400-600mcg folate from the cereal I'm eating. Would like to get back to more wholesome sources but they don't agree with me. I also have a methyl folate supplement but it makes me very nauseous and doesn't seem to do anything.

 

[redsun]

@Kratos Noted. If I hadn't had escalating test results for a decade I'd go with that, would certainly be easier. I've tried metergoline, which had almost no effect on the me. Did help digestion a bit, but that was all after 80% of the bottle. Haven't touched it since.

@redsun To be more specific about the food I listed, on a typical day I have at least one serving of red meat each meal. I typically have 5 servings a day which is easily 20+mg of zinc and 3000+mg of tyrosine. Plus cheese three times a day, typically 2 oz each serving; from what I'm looking at I'm averaging 1800mg tyrosine just from cheese. For more iron than what those give I also have dark chocolate, 1-3 oz a day, I negelcted to mention that. I did forget to mention that I have baked beans 2-3 times a week, mainly for digestive purposes. I'm getting 400-600mcg folate from the cereal I'm eating. Would like to get back to more wholesome sources but they don't agree with me. I also have a methyl folate supplement but it makes me very nauseous and doesn't seem to do anything.

Thats a good start up tyrosine level from your diet then and seems most everything is covered. Problem is when tyrosine is eaten from normal foods its competing with other amino acids for entry into the brain. I always get about 4g tyrosine a day sometimes more from eating and it didnt do much until I took l-tyrosine by itself with some drink to spike insulin and was already taking 400mg B6 HCL version a day for awhile. It is considered a stimulant when taken alone for the reasons I already mentioned. The B6 amount from food wont be enough if B6 is your issue. Consider L-tyrosine(I got a bottle of 60 500mg tablets for $10) it might help giving tyrosine a no traffic one way ticket to your brain. It has helped me immensely. In the end if you have a tumor of some kind I dont know how much B6 and tyrosine will actually help but its worth a try because in the end this is the pathway to dopamine and dopamine is necessary to counteract prolactin.

 

[LuMonty]

Thats a good start up tyrosine level from your diet then and seems most everything is covered. Problem is when tyrosine is eaten from normal foods its competing with other amino acids for entry into the brain. I always get about 4g tyrosine a day sometimes more from eating and it didnt do much until I took l-tyrosine by itself with some drink to spike insulin and was already taking 400mg B6 HCL version a day for awhile. It is considered a stimulant when taken alone for the reasons I already mentioned. The B6 amount from food wont be enough if B6 is your issue. Consider L-tyrosine(I got a bottle of 60 500mg tablets for $10) it might help giving tyrosine a no traffic one way ticket to your brain. It has helped me immensely. In the end if you have a tumor of some kind I dont know how much B6 and tyrosine will actually help but its worth a try because in the end this is the pathway to dopamine and dopamine is necessary to counteract prolactin.

I have most of a bottle of Doctor's Best Tyrosine so I'll try it your way, can't hurt right? Will add more B6, I know I have some extra of that somewhere too.

 

[redsun]

I have most of a bottle of Doctor's Best Tyrosine so I'll try it your way, can't hurt right? Will add more B6, I know I have some extra of that somewhere too.

Amino acids are generally harmless so yes it surely won't hurt and it is likely to help. Good luck.

 

[LuMonty]

Thanks @redsun

For those just viewing this topic, the units for the prolactin measure are µg/L and typical measure for my demographic even in modern medicine is around 6-9.

 

[lampofred]

Prolactin is kind of hard to reduce naturally...

Thyroid supplementation, coffee, increased salt intake, vitamin E, vitamin B6, zinc, progesterone, avoiding excess water consumption, probably avoiding dairy, avoiding orgasm, sleeping less should all help.

 

[LuMonty]

Prolactin is kind of hard to reduce naturally...

Thyroid supplementation, coffee, increased salt intake, vitamin E, vitamin B6, zinc, progesterone, avoiding excess water consumption, probably avoiding dairy, avoiding orgasm, sleeping less should all help.

I haven't heard of sleeping less for lower prolactin. How does that work? I can give it a try, I feel tired regardless of the amount of sleep I get.

 

[lampofred]

I haven't heard of sleeping less for lower prolactin. How does that work? I can give it a try, I feel tired regardless of the amount of sleep I get.

Sleep instantly causes a rise in prolactin secretion and prolactin continues to be secreted for as long as you are asleep, so sleeping less will reduce prolactin release. I think it's because dopamine is related to wakefulness - when you are asleep, dopamine goes down, so there is nothing inhibiting prolactin anymore (I think dopamine agonists cause sleepiness by a method other than direct dopamine agonism because pure L-DOPA doesn't cause sleepiness, only dopamine agonists which also affect other receptors like serotonin receptors).

Forgot to mention in my above post that sunlight/bright incandescent light should also help to lower prolactin.

Also avoiding PUFA is probably the best way to lower prolactin in the long-run.

 

[LuMonty]

Sleep instantly causes a rise in prolactin secretion and prolactin continues to be secreted for as long as you are asleep, so sleeping less will reduce prolactin release. I think it's because dopamine is related to wakefulness - when you are asleep, dopamine goes down, so there is nothing inhibiting prolactin anymore (I think dopamine agonists cause sleepiness by a method other than direct dopamine agonism because pure L-DOPA doesn't cause sleepiness, only dopamine agonists which also affect other receptors like serotonin receptors).

Forgot to mention in my above post that sunlight/bright incandescent light should also help to lower prolactin.

Also avoiding PUFA is probably the best way to lower prolactin in the long-run.

Great, thanks!

 

[shepherdgirl]

Have you tried lisuride?

 

[olive]

I agree with the l-tyrosine suggestion. Take it in the morning and spend time outside in the sun to make it active. Folate is also a very good suggestion, spinach is a good source. It’s likely the hallucinations are a product of folate deficiency.
Supplement with 25mg P5P shown to lower prolactin dramatically, avoid supplemental b6 as it can cause nerve issues.
Lowering estrogen will help control prolactin. That means ridding yourself of excess adipose tissue, lifting heavy weights but not to failure and ensuring sufficient micronutrient intake - track with cronometer.
You also might want to consider avoiding dairy or at least never consuming dairy without a strong coffee beforehand. Beta-casomorphin in dairy attaches to the opioid receptor and increases prolactin. Coffee contains caffeol quinine which works as a functional opioid antagonist. Also a good idea to avoid opiods in general, cyproheptadine makes for a decent non-opiate painkiller in my experience.

 

[LuMonty]

Have you tried lisuride?

That's what I've been using to keep the symptoms under control. It's too expensive to use the amount I need.

@olive I'm glad I didn't have any B6 since last night. I'll see about your other suggestions.

 

[LuMonty]

I took the 1500mg tyrosine. As expected, I feel very nauseous but one dose is too early to tell anything. It did seem to help my digestion move along, passed some wind and had a small bathroom trip. I'll try to stick with it, typically I can't stand this weird feeling after a few days.

An important detail I should have added in the OP: magnesium helps, but I still get restless legs while falling asleep. Also to clarify, the visual disturbances are like shadows and lingering images. Stuff like floaters. I wouldn't say this otherwise, but I've accidentally taken enough benadryl while sleep deprived (apnea, undiagnosed), to know the difference.

 

[cihans]

Shadow in your pituitary means a micro benign or adenoma I doubt. Suggestions are priceless with supplements and diet wise but how do you proceed to shrink benign or adenoma without pharmaceuticals like cabergoline (dostinex) or bromocriptine? I have 4mm benign in pituitary gland too, my symptoms like yours and after 2 months on cabergoline everything seems fine and symptoms eased. I don't know any supplements in the world shall shrink it. Please consult your doctor to possible treatment ways. Shadow in a pituitary gland which is very very close to your brain and very close to your eye nerves is not a joke. Side note now I have 0.03 serum prolactin (must be 2.0 - 18.0 ng/mL). I have a break and waiting for to prolactin to raise a little to be in range, also tanked prolaction have horrible side effects too. If you need more information I'll be around. Take care.

 

[LuMonty]

Shadow in your pituitary means a micro benign or adenoma I doubt. Suggestions are priceless with supplements and diet wise but how do you proceed to shrink benign or adenoma without pharmaceuticals like cabergoline (dostinex) or bromocriptine? I have 4mm benign in pituitary gland too, my symptoms like yours and after 2 months on cabergoline everything seems fine and symptoms eased. I don't know any supplements in the world shall shrink it. Please consult your doctor to possible treatment ways. Shadow in a pituitary gland which is very very close to your brain and very close to your eye nerves is not a joke. Side note now I have 0.03 serum prolactin (must be 2.0 - 18.0 ng/mL). I have a break and waiting for to prolactin to raise a little to be in range, also tanked prolaction have horrible side effects too. If you need more information I'll be around. Take care.

Many thanks, as soon as I can I'll get this all checked out by doctor.

Should have mentioned for everyone trying to help that I have insurance but no card or information. Still waiting on corporate from the place my wife works at, or the health insurance corporate. We've been waiting almost a month after last request. That's the main reason I've posted for help here. Also because the doctors I've been under the care of think what I've listed here is normal, but that's another story.