Intravascular Leiomyomatosis. What Could It Be?

[Peatch]

Hello! Just like many here, I’ve been doing the “Peat thing” with good and predictable results. There is much coherent and valuable information here, I have found.

My/our story:

Four years ago, my wife was diagnosed with Intravascular leiomyomatosis (IVL) after an emergency full-hysterectomy was performed to remove a large mass (which was biopsied). Her doctor relayed to us at the time that due to the extreme rarity of the disease, very little is known about IVL.

No treatment or prescriptions were offered other than the advice to avoid estrogen.

“Avoid estrogen” brought me here those few years ago.

I’m wondering if there are any educated guesses to what Intravascular leiomyomatosis is, maybe what it may be related to.. Finding a “close cousin” to IVL may reveal something very useful..

Fortunately, the last MRI (18 months ago) to check for reoccurrence elsewhere were negative.

The original diagnosing physician (in England) has since retired and I’m afraid that my wife’s case may be falling through the cracks. Her new doctor (in Canada) has never heard of IVL and has no advice..

Thoughts, ideas?

Thank you!

 

[Koveras]

Seems to have a relationship to / share some similarities with endometriosis.

intravascular leiomyomatosis endometriosis - PubMed - NCBI

Endometriosis Is An Estrogen-caused And Estrogen-driven Disease

Endometriosis is driven by estrogen

Things to look into:

Low fat / low PUFA diet
Sufficient protein (70-120 g/day)
Vitamin E
Vitamin A
Vitamin K2
Aspirin
Dopamine Agonists (Bromocriptine, Cabergoline, Lisuride)
Cyproheptadine
High Dose Biotin (Biotin as a treatment for multiple sclerosis (MS))
Thiamine and Riboflavin (Vitamins B1 & B2 Are Required For Estrogen Inactivation By Liver)

 

[Peatch]

Thank you Koveras, that kind of connection and linking is exactly what I was looking for (and struggling with). I had read pubmed articles but wasn’t clueing-in. So much information…
We had been lowering her estrogen exposure and have Idealabs products in-stock, mostly unused until now as my wife's original doctor remained pro-estrogen / anti-progesterone, believe it or not…
There are some things you listed that I have not previously considered so, I will look into those ideas with interest!

 

[Koveras]

Thank you Koveras, that kind of connection and linking is exactly what I was looking for (and struggling with). I had read pubmed articles but wasn’t clueing-in. So much information…
We had been lowering her estrogen exposure and have Idealabs products in-stock, mostly unused until now as my wife's original doctor remained pro-estrogen / anti-progesterone, believe it or not…
There are some things you listed that I have not previously considered so, I will look into those ideas with interest!

No problem, hopefully some it turns out to be helpful.

Haidut made some additional comments about biotin/estrogen further down here:

Estrogen (estradiol) Promotes Autoimmunity

Depends on the context. Very high dose biotin can completely stop estrogen production as per these studies:
The effect of an acute dose of biotin at a post-implantation stage and its relation with female sex steriods in the rat. - PubMed - NCBI
The effect of an acute dose of biotin at the pre-implantation stage and its relation with female sex steroids in the rat. - PubMed - NCBI
"...Similarly biotin and progesterone adversely affected G-6-PD activity in all the organs studied except the liver and adrenal. Estrogen stimulated the enzyme activity in all these organs but adrenal. The study suggests that the primary reason for an acute dose of biotin-induced loss of pregnancy is blockage of estrogen production, which probably regulates endogenous progesterone secretion. The associated metabolic derangements are probably secondary to estrogen deficiency and are discussed."

The dose used in those studies would be above 1g for humans. However, the human study with MS (which is an estrogen-caused and -driven disease) found that doses as high as 600mg+ did not work better than 300mg.
Biotin as a treatment for multiple sclerosis (MS) | Ray Peat Forum
So, 300mg may be needed for very bad cases of estrogen excess but I think most people can benefit from as "little" as 15mg combined with other estrogen antagonists like vitamins A, E, K, and aspirin, glycine, emodin, etc. There are quite a few things that can lower estrogen more reliably than biotin and in lower doses so I'd try those first before high dose biotin. On the flip side, I think biotin has no known toxicity so it may be safer than things like high dose vitamin E, A or aspirin.

 

[Peatch]

It's really good to have an even narrower and straighter and faster path. Defensible too, as that may be necessary when a doctor gets involved.. I'm just hopeful that they will appreciate the direction!
In our case, estrogen in excess, is very acutely troublesome. So, your insight is super helpful. Thanks again Koveras!

 

[helena rozo]

Hello! Just like many here, I’ve been doing the “Peat thing” with good and predictable results. There is much coherent and valuable information here, I have found.

My/our story:

Four years ago, my wife was diagnosed with Intravascular leiomyomatosis (IVL) after an emergency full-hysterectomy was performed to remove a large mass (which was biopsied). Her doctor relayed to us at the time that due to the extreme rarity of the disease, very little is known about IVL.

No treatment or prescriptions were offered other than the advice to avoid estrogen.

“Avoid estrogen” brought me here those few years ago.

I’m wondering if there are any educated guesses to what Intravascular leiomyomatosis is, maybe what it may be related to.. Finding a “close cousin” to IVL may reveal something very useful..

Fortunately, the last MRI (18 months ago) to check for reoccurrence elsewhere were negative.

The original diagnosing physician (in England) has since retired and I’m afraid that my wife’s case may be falling through the cracks. Her new doctor (in Canada) has never heard of IVL and has no advice..

Thoughts, ideas?

Thank you!

I have been treated for IVL in the last 14 years. Doctors thought i had fibroids and after surgery to remove them and a histerectomy, it was discovered I had this rare disease. I had complications after surgery due to scar tissue so two intestinal obstructions required surgery. I have been treated with Lupron injections to suppress my hormones. This has been successful but this is a strong medicine that has given me a lot of arthritis and joint pain. I hope your wives tumors have not come back. In my case because of the complications with the obstructions it is recommended that I not have surgery to remove the tumors. I am being treated at NIH in Maryland. If I can be of any assistance with further information please let me know.