Poll - very high prolactin

[godlovesatrier]

I've come across some old threads where people mention they have very high prolactin. Mines been high for 6 weeks two consequitive sets of tests. I'm to be re tested again in 6 weeks. GPs in the UK don't test prolactin levels as part of any standard or thorough tests I've seen (I've seen about 6 doctors over 6 years including 1 specialist). So I have no idea of knowing how long prolactin has been high.

Very high prolactin seems to have a whole host of side effects. Including aggregating auto immune disorders like lupus. They also cause issues with bone density and calcification. The side effects go on.

I've removed lion's mane which I believed was the issue. I've also removed egcg. Both 5-ar inhibitors from my supplement set. But my prolactins actually gone up not down.

Lupus can I believe lower neutrophil counts as well and as my neutrophils are dropping as my prolactin is rising (based on two sets of seperate tests) I'm wondering if there's a connection.

My free t is 0.29 with the lowest reading being 0.2 apparently high prolactin can cause low free t if it doesn't cause low testosterone. Although I'm not clinically low in free t unless it drops below 0.2.

Thanks for the replies.

 

[lenora]

Hi.......I'm 74 and before I knew I had any conditions, neurological illnesses, ME and a host of others, I had high prolactin levels (can't tell you what they were b/c this was about 40 yrs. ago). I'd also had two children, but apparently that had no bearing on it....the youngest was about 6 yrs. old then.

I was put on bromocriptine for years and the tumor did disappear, and I've had no problems with it since. I do have plenty of other problems, but this one is now stable. What does your Dr. say? Yours, Lenora.

 

[godlovesatrier]

Hi Lenora,

I've even going back over my notes. Beta glucans do increase prolactin levels. But even when I removed the lion's mane which was 50% beta glucans the prolactin still went up. I've just removed oat bran completely today. Going to see how that fairs. Joshua was fairly sure that oat bran should be rotated anyway because the beta glucans immune response probably isn't that optimal if taken every day.

I'll see what my next set of blood tests look like.

 

[Zebra]

I've come across some old threads where people mention they have very high prolactin. Mines been high for 6 weeks two consequitive sets of tests. I'm to be re tested again in 6 week

In my experience, prolactin level is usually checked when a doctor suspects a problem with the pituitary gland. Is that what's happening with you?

If your prolactin has been elevated twice, and will be checked again in 6 weeks, is your doctor going to order a dedicated MRI of the pituitary for you?

I ask because I'm concerned about you, and I hope your doctor is too!

Please let me know if I have this all wrong.

 

[godlovesatrier]

Hi Zebra,

Pretty much yes to everything. Lots of specialist referrals if it's still high in a weeks time.

It's odd that it never gets tested for, not sure what the pituitary symptoms are but it must be relevant for some.

Thanks,

 

[Luxintenebrislucet]

i was about to post that I have high prolactin levels and they increase every year more and more. I also have all the symptoms associated with high prolactin. Sadly the endocrinologist doesn't want to put me on medication. They should rule out a tumor, but I dont think that's the problem. I think it can be related to inflammation ?

 

[godlovesatrier]

Yes they should definitely check for a tumor.

I'm not sure what's causing it for me, but it seems very odd. If it's not the beta glucan I take every day I am not sure what it is.

 

[Crux]

If iron is not regulated, it can accumulate in organs , including the pituitary.

Low neutrophils can mean other things , but copper deficiency is one of them.
Copper is needed to regulate iron.

Perhaps dysregulated iron is a cause.

 

[Pyrrhus]

In my experience, prolactin level is usually checked when a doctor suspects a problem with the pituitary gland. Is that what's happening with you?

You may also be interested in John Richardson's buspirone challenge test, which suggested a possible problem in the hypothalamus:

ETA: from Charles Shepherd's book, Living with ME: (not going to write it all)

"When people with ME/CFS were given busprione, their output of prolactin far exceeded that of the control group (as well as that of a group with depression). This type of experiment has also been repeated by other researchers, most of whom have reported simiar findings (see refs 156, 158, 172, 173 & 178).

It has also been suggested that a buspirone challenge could become a use objective test for monitoring progress in ME/CFS,or even a diagnostic test. Levels of prolactin before administration of buspirone are, incidentally, quite normal in people with ME/CFS. A raised level of resting prolactin may indicate the presence of a pituitary tumour."

See also:
Relationship Between SPECT Scans and Buspirone Tests in Patients with ME/CFS (Richardson, 1998)
https://forums.phoenixrising.me/thr...ship-between-spect-scans-and-buspirone.10441/
(only available to Phoenix Rising members with more than 100 posts)

 

[godlovesatrier]

Thank you Pyrrhus. Fascinating study. But what does it all mean?

Maybe the small amount of pituitary stimulation that the beta glucans are giving me is causing the abnormal resulting levels of prolactin.

It may also have nothing to do with beta glucan. But they do increase prolactin secretion.

Even if that was true I've no idea how you would supress prolactin release. With drugs I mean. Vitamin E and zinc don't appear to be enough on there own. More research needed. Thanks for the link.

 

[kewia]

@godlovesatrier,

Do you still experience high prolactin levels?

 

[godlovesatrier]

Hello @kewia

Apparently according to Dr Goldstein high prolactin wasn't actually that uncommon among ME patients.

However to my knowledge my high prolactin levels are caused by oat bran. When I stop oat bran my prolactin levels return to normal. When I take oat bran they are three times the normal level.

Oat bran increases prolactin secretion. There's a study that shows this. So yeah it's the oat bran. My endocrinologist also confirmed this and told me to stop taking it.

I've now stopped it and am taking andrographis paniculata instead. Which is anti Lyme and increases cd8 t cell numbers and interferon gamma levels within just 7 days of ingestion. Heavy metals from the plant is a worry but it gives me a huge boost in energy. I'm convinced now that's due to the higher t cell numbers and enhance interferon gamma levels.

 

[kewia]

Which is anti Lyme and increases cd8 t cell numbers and interferon gamma levels within just 7 days of ingestion.

So it's pro inflammatory?
I thought you said in your blog it reduced your swelling of your neck, assuming it is anti-inflammatory.

Heavy metals from the plant is a worry but it gives me a huge boost in energy.

That's nice to hear. May it last forever.

 

[godlovesatrier]

So the second part of my post is talking about a botanical plant called Andrographis Paniculata.

First part is talking about oat bran

I've been taking Andrographis on and off for 4 years. Often at high doses for extended periods of time. The effects last a few weeks after stopping but then whatever the issue is it comes back.
It does give me an energy boost though. Always has. I get an energy boost from any and all immune modulators and some antiviral drugs like famvir. Often though it's too much causing insomnia or light sleep. Which causes ebv to replicate it the drug isn't strong enough to hit it.
I also think I have some other secondary infection but so far I haven't got a positive test for anything. Parvovirus is one thing I have yet to test for.

However I think my pathogenic load is higher these days and andrographis isn't enough.

This is why some forum members here joined discord becuase they looked for drugs and interferons that kill infections. Not just knocking the infections down.