Suggestion for a post: the definition or meaning of "standard of care". Is this the best known approach to dealing with a medical issue, based on the available data? Or, is it what insurance companies will cover? Or both? Because sometimes it seems like this term is used negatively, as in "they just received standard of care treatment" and not some better new thing that perhaps isn't covered by insurance. "Standard of care" is confusing to me - maybe to some other people too. Thank you!
Similarly, I had blood clots in both lungs a few years ago, so I can't have HRT or estrogen-based treatments. I have had menopausal symptoms (joint pain, heart palpitations, hot flashes, cold flashes, tingling) for almost two years. My doc says to wait it out. Is that my only choice?
Maybe I didn't read it correctly, but in regards to testing for the MHTFR gene mutation, in my specific case was very useful. I had folates and b12 under my feet, homocistein was not so good, not to mention an almost invalidating physical fatigue at age 25/30. My general doctor shrug it as nothing. Until I started IVF and I had to do these genetic tests. Not even expensive here in Europe. After seeing the pretty common genetic mutation, given that my nutrition was quite good in terms of folates etc but it seems I wasn't absorbing them, they gave me methyl folata and methyl cobalamine. I didn't even need to check my blood. My fatigue went away in a month or so, I was reborn. Out of curiosity I checked my blood levels of folates, b12, homocistein and they were excellent. Of course if I had a doctor telling me that this gene mutation was very common and just to be sure to check my values once and integrate methyl folate etc... I wouldn't have spent 5 miserable years. So they might be not useful to decide whether to use hormones, but they might resolve situations like mine at least. Not tk mention that with little folic acid the IVF doctor wouldn't even put me on hormones because my % of risk for neural defects was quite high. Just wanted tk add my experience to give a broader view of the MHTFR gene test and how certain supplements truly helped my quality of life tremendously.
Ok I've read it (quick reader here). In reality my case was a bit different than what you rightly stated in the article. I try to explain. In Italy we do routine blood works once per year. And it includes folates and other vitamins. Set aside my debilitating energies, my blood work, for years, reported low (very low, almost zero) folic acid and quite low vit b12. I didn't think anything about it as my doctor didn't either. But when the miserable years continued I became curious and asked if i could do something to increase my folates and b12 and homocistein. Doctor told me in a dismissive way to eat more broccoli or what you have it that contained folates. I tried, nothing changed. So he gave me non methylated folic acid. The usual one you talk about, sybthetized in a laboratory. Nothing changed. If anything, the value was even lower a few times. Then IVF time came and I discover by chance my genetic mutation. The doctor, after listening my issues and trials, said I should then try Methylated forms. It worked big time for me. Basically the doctor told me that if with food and normal folic acid nothing changed and I had almost zero, he couldn't treat me. He also mentioned about the more robust studies for folates supplements but even changing brands... They did nothing for me. No idea why. Methyl folate raised it to an optimal level and same with Metyl Cobalamine. What can j say... He never mentioned anything about estrogen relationship, it was simply to raise my values. And oh my, my 5 miserable years of exhaustion were completely gone. Maybe I'm a complex case, I have no idea. But this was my experience so maybe in my case, testing was not all that bad...even if I then discovered that a lot of people world wide have these mutation, but still... Thanks for the interesting article!
I'll read it, thanks! My point was that without that test I would have stayed in a miserable condition. But maybe you address this in the article, off I go to read it, thanks!
Centrum has a new series of vitamin supplements* out targeting menopausal women. In addition to the usual vitamins and minerals, they contain geniVida which is a trademarked synthetic genistein. Genistein is an isoflavone derived from soy. It is similar to 17β-estradiol and mimics the binding of estrogens to cell receptors, exerting estrogenic effects in target organs. I assume that the mechanism for reduction in vasomotor symptoms attributed to geniVida is via binding to estrogen receptors in the brain.
Women with ER/PR positive breast cancer are discouraged from taking estrogen supplements.
Can women with estrogen/progesterone receptor (ER/PR) positive breast cancer take theses supplements, eg. Centrum Complete Multivitamin + Hot Flashes Support? Or should they avoid these supplements as well as soy products?
I wrote to the company and got a mealy mouthed non-answer back.
It is frustrating that supplements have virtually no data whereas pharmaceuticals have extensive data about safety and efficacy.
Just like the commercial in Canada right now for a shampoo specifically for menopause!!! Once again estrogen patches are not available in Ontario (not sure if nation wide) The only one that seems to be in pharmacies presently is 100mcg.
Requested topic please & thank you: Lichen sclerosus. Current & what is new / in-work. Especially recalcitrant LS. Appreciate you!
I have been meaning to write about it, so thanks for the reminder
Ha, meant to write refractory, but recalcitrant kinda works!
I had never heard of this test before. I imagine if someone orders enough tests they will find something wrong. Great information thank you.
Neither did I. It seems there's a good reason for that...
Thank you for this excellent guidance. So much bad advice now that genetic testing has become such a lucrative market.
thank you for this one!!
Suggestion for a post: the definition or meaning of "standard of care". Is this the best known approach to dealing with a medical issue, based on the available data? Or, is it what insurance companies will cover? Or both? Because sometimes it seems like this term is used negatively, as in "they just received standard of care treatment" and not some better new thing that perhaps isn't covered by insurance. "Standard of care" is confusing to me - maybe to some other people too. Thank you!
Thanks for the correction!!! Your input is greatly appreciated!!!
Similarly, I had blood clots in both lungs a few years ago, so I can't have HRT or estrogen-based treatments. I have had menopausal symptoms (joint pain, heart palpitations, hot flashes, cold flashes, tingling) for almost two years. My doc says to wait it out. Is that my only choice?
There are many options, such as fezolinetant, gabapentin, and venlafaxine to name a few!
There are non-hormonal treatments for menopausal symptoms. Your MD is very ignorant if he/she doesn't know about them.
Agree! I took info received here from Dr. Gunter, specifically estrogen that was not metabolized by the liver, and my doc (a female my age) said no.
Not sure what estrogen you're talking about, but I was referring to non-hormonal options. They don't work as well as estrogen, but they work.
OK, I'll try again and bring up non-hormonal treatments.
Maybe I didn't read it correctly, but in regards to testing for the MHTFR gene mutation, in my specific case was very useful. I had folates and b12 under my feet, homocistein was not so good, not to mention an almost invalidating physical fatigue at age 25/30. My general doctor shrug it as nothing. Until I started IVF and I had to do these genetic tests. Not even expensive here in Europe. After seeing the pretty common genetic mutation, given that my nutrition was quite good in terms of folates etc but it seems I wasn't absorbing them, they gave me methyl folata and methyl cobalamine. I didn't even need to check my blood. My fatigue went away in a month or so, I was reborn. Out of curiosity I checked my blood levels of folates, b12, homocistein and they were excellent. Of course if I had a doctor telling me that this gene mutation was very common and just to be sure to check my values once and integrate methyl folate etc... I wouldn't have spent 5 miserable years. So they might be not useful to decide whether to use hormones, but they might resolve situations like mine at least. Not tk mention that with little folic acid the IVF doctor wouldn't even put me on hormones because my % of risk for neural defects was quite high. Just wanted tk add my experience to give a broader view of the MHTFR gene test and how certain supplements truly helped my quality of life tremendously.
I am sorry, but you have been misled. There is no indication for MTHFR testing. I have written several posts on the subject. Here is a good one to start with https://vajenda.substack.com/p/the-difference-between-folic-acid
Ok I've read it (quick reader here). In reality my case was a bit different than what you rightly stated in the article. I try to explain. In Italy we do routine blood works once per year. And it includes folates and other vitamins. Set aside my debilitating energies, my blood work, for years, reported low (very low, almost zero) folic acid and quite low vit b12. I didn't think anything about it as my doctor didn't either. But when the miserable years continued I became curious and asked if i could do something to increase my folates and b12 and homocistein. Doctor told me in a dismissive way to eat more broccoli or what you have it that contained folates. I tried, nothing changed. So he gave me non methylated folic acid. The usual one you talk about, sybthetized in a laboratory. Nothing changed. If anything, the value was even lower a few times. Then IVF time came and I discover by chance my genetic mutation. The doctor, after listening my issues and trials, said I should then try Methylated forms. It worked big time for me. Basically the doctor told me that if with food and normal folic acid nothing changed and I had almost zero, he couldn't treat me. He also mentioned about the more robust studies for folates supplements but even changing brands... They did nothing for me. No idea why. Methyl folate raised it to an optimal level and same with Metyl Cobalamine. What can j say... He never mentioned anything about estrogen relationship, it was simply to raise my values. And oh my, my 5 miserable years of exhaustion were completely gone. Maybe I'm a complex case, I have no idea. But this was my experience so maybe in my case, testing was not all that bad...even if I then discovered that a lot of people world wide have these mutation, but still... Thanks for the interesting article!
I'll read it, thanks! My point was that without that test I would have stayed in a miserable condition. But maybe you address this in the article, off I go to read it, thanks!
Centrum has a new series of vitamin supplements* out targeting menopausal women. In addition to the usual vitamins and minerals, they contain geniVida which is a trademarked synthetic genistein. Genistein is an isoflavone derived from soy. It is similar to 17β-estradiol and mimics the binding of estrogens to cell receptors, exerting estrogenic effects in target organs. I assume that the mechanism for reduction in vasomotor symptoms attributed to geniVida is via binding to estrogen receptors in the brain.
Women with ER/PR positive breast cancer are discouraged from taking estrogen supplements.
Can women with estrogen/progesterone receptor (ER/PR) positive breast cancer take theses supplements, eg. Centrum Complete Multivitamin + Hot Flashes Support? Or should they avoid these supplements as well as soy products?
I wrote to the company and got a mealy mouthed non-answer back.
It is frustrating that supplements have virtually no data whereas pharmaceuticals have extensive data about safety and efficacy.
*from the Centrum website
https://www.centrum.com/products/menopause-support/
They are just capitalizing on the menopause gold rush. If they wanted to help women, they'd do real studies
Just like the commercial in Canada right now for a shampoo specifically for menopause!!! Once again estrogen patches are not available in Ontario (not sure if nation wide) The only one that seems to be in pharmacies presently is 100mcg.
Oh good grief.
Menopause shampoo?! Oh gosh; well there's that old saying -- when you think you've heard/seen everything, you haven't...