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Arcadian

Ideal_Rock
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Joined
Sep 17, 2008
Messages
7,896
@missy Lots of hugs to you! If you're going to be an advocate on your own behalf, better to have someone that works with you than against. So it makes me happy that you're taking these steps. I don't think you will regret them. Women get the short end of the stick much of the time. Our docs don't really hear us as they should, especially gyns. If you feel like crap you do. and those lab numbers scale so freaking weird. what might be normal is not normal for you.

For me its now just refining but also dealing with some blood glucose issues which probably won't be an easy fix.

But most days I actually do feel pretty good. Thankfully if I DO wake up at 3am, I can always go back to sleep easily. When my estrogen was in the toilet, that was something I could not do.
 

missy

Super_Ideal_Rock
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Joined
Jun 8, 2008
Messages
44,854
@missy Lots of hugs to you! If you're going to be an advocate on your own behalf, better to have someone that works with you than against. So it makes me happy that you're taking these steps. I don't think you will regret them. Women get the short end of the stick much of the time. Our docs don't really hear us as they should, especially gyns. If you feel like crap you do. and those lab numbers scale so freaking weird. what might be normal is not normal for you.

For me its now just refining but also dealing with some blood glucose issues which probably won't be an easy fix.

But most days I actually do feel pretty good. Thankfully if I DO wake up at 3am, I can always go back to sleep easily. When my estrogen was in the toilet, that was something I could not do.

I am glad you are feeling good most days. I have an update.

Right after I read your post yesterday, my gynecologist came through for me and RXd what I requested. Much to my pleasant surprise.

However yesterday afternoon I happened to speak with my girlfriend who is a gynecologist (we have been friends since college) and I asked to make a telemedicine appt with her for a second opinion. So that telemedicine call is late this afternoon.

When pharmacy called me yesterday and told me the original gynecologist had called in new RXs I just went ahead and just ordered a 3 months supply of E, T and P. I have no clue of the cost even but I know it's going to be expensive. I know it is a process so I made a spur of the moment decision to order it.

We will see what my friend has to say about what the other gyn prescribed when I have my telemedicine call with her.

I did call Defy Medical and got the info I need for the future should I decide they are my best course of action. I was prepared to go ahead with them but then the pharmacy called me with the new meds so I put Defy on hold for now. I will say they seem very organized and professional and I know if I need to go with them in the future it could be a good way to go for me.

So what the original gynecologist with whom I started this journey, prescribed for me is:
2 mg Estradiol cream in a hypoallergenic base, 1 mg Testosterone cream (I asked for separate creams in case I need to stop or adjust the dose of the T) and 100 mg Progesterone pills. I know I can tolerate the 100 mg progesterone as I did fine on that for the past 3months. I tried both 100 and 200 mg and noticed no difference so we decided to go with 100 mg. She also said I could do every other day of the 100 mg progesterone...what are your thoughts about that? I am only taking progesterone for the protective mechanism it has for the endometrium. And it does help me fall asleep. But mainly taking it for the protection it supposedly offers when one has a uterus and is also taking E.

I am hoping the estrogen (and the T) might help my bones. That is my main concern over all else. Or else I will have to go on OP meds which I probably will have to do anyway but hoping this can help. It is my fervent wish because for me, osteoporosis has been the one diagnosis that has the potential of changing my life in a very bad way and I won't go down without a fight.

Thanks for listening @Arcadian. Sorry for the long post. I appreciate your input and your experience and always keeping good thoughts for you in this journey as well.
 

Arcadian

Ideal_Rock
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Joined
Sep 17, 2008
Messages
7,896
I am glad you are feeling good most days. I have an update.

Right after I read your post yesterday, my gynecologist came through for me and RXd what I requested. Much to my pleasant surprise.

However yesterday afternoon I happened to speak with my girlfriend who is a gynecologist (we have been friends since college) and I asked to make a telemedicine appt with her for a second opinion. So that telemedicine call is late this afternoon.

When pharmacy called me yesterday and told me the original gynecologist had called in new RXs I just went ahead and just ordered a 3 months supply of E, T and P. I have no clue of the cost even but I know it's going to be expensive. I know it is a process so I made a spur of the moment decision to order it.

We will see what my friend has to say about what the other gyn prescribed when I have my telemedicine call with her.

I did call Defy Medical and got the info I need for the future should I decide they are my best course of action. I was prepared to go ahead with them but then the pharmacy called me with the new meds so I put Defy on hold for now. I will say they seem very organized and professional and I know if I need to go with them in the future it could be a good way to go for me.

So what the original gynecologist with whom I started this journey, prescribed for me is:
2 mg Estradiol cream in a hypoallergenic base, 1 mg Testosterone cream (I asked for separate creams in case I need to stop or adjust the dose of the T) and 100 mg Progesterone pills. I know I can tolerate the 100 mg progesterone as I did fine on that for the past 3months. I tried both 100 and 200 mg and noticed no difference so we decided to go with 100 mg. She also said I could do every other day of the 100 mg progesterone...what are your thoughts about that? I am only taking progesterone for the protective mechanism it has for the endometrium. And it does help me fall asleep. But mainly taking it for the protection it supposedly offers when one has a uterus and is also taking E.

I am hoping the estrogen (and the T) might help my bones. That is my main concern over all else. Or else I will have to go on OP meds which I probably will have to do anyway but hoping this can help. It is my fervent wish because for me, osteoporosis has been the one diagnosis that has the potential of changing my life in a very bad way and I won't go down without a fight.

Thanks for listening @Arcadian. Sorry for the long post. I appreciate your input and your experience and always keeping good thoughts for you in this journey as well.
My biggest concern is how low the E is. Its still very low and for bone protection you're going to need more than that. T is probably fine. I keep mine on the lower side (lower than I do with E!) and as a women, we need E way more than T. The good is we can titrate upwards on E by a lot, and even though I have cancer concerns, I'm on a much higher dose than you are! So you can always use more and won't hurt you. (remember, many trans men to women get way more E than menopausal women usually get access to which should tell you something!)

If there are cancer concerns you do have to watch your levels.

Aside from that, are these specially compounded?

P ...you're so lucky you can take it. I don't have a uterus so don't exactly NEED P for that reason, but, I do need to consider how to best add it in. If your dose works for you, continue taking it until it dosen't. You'll know when that happens because your body will tell you.

Also don't worry about how long this is. You could be well helping someone else who may not know how to go about any of these things. By helping ourselves we can also help each other.
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
44,854
My biggest concern is how low the E is. Its still very low and for bone protection you're going to need more than that. T is probably fine. I keep mine on the lower side (lower than I do with E!) and as a women, we need E way more than T. The good is we can titrate upwards on E by a lot, and even though I have cancer concerns, I'm on a much higher dose than you are! So you can always use more and won't hurt you. (remember, many trans men to women get way more E than menopausal women usually get access to which should tell you something!)

If there are cancer concerns you do have to watch your levels.

Aside from that, are these specially compounded?

P ...you're so lucky you can take it. I don't have a uterus so don't exactly NEED P for that reason, but, I do need to consider how to best add it in. If your dose works for you, continue taking it until it dosen't. You'll know when that happens because your body will tell you.

Also don't worry about how long this is. You could be well helping someone else who may not know how to go about any of these things. By helping ourselves we can also help each other.

Thank you @Arcadian and I agree. I hope this thread is helpful for others.

So my blood estradiol is 20 (from 5!) with the Biest cream I had been applying which was only 0.25 mg estradiol and 1mg Estriol. I requested my gynecologist to RX at least 2 or 3 mg Estradiol so this is what she prescribed.

My goal is to get my blood levels of estradiol up to at least 70 if possible. I read that is helpful for bone health. Around 60-70.

Do you think I should ask my gynecologist friend today (when we have the telemedicine call later) to up my Estradiol (she might not want to but it's worth asking if you think I should) or should I see how I do on the 2 mg as it is a jump from what I had been taking.

You are right. The only reason I started BHRT is for my bones. I never had any postmenopausal symptoms. No hot flashes nothing. And I take Vagifem to deal with my vaginal health and have been doing that for a few years. Being a woman is challenging business lol. Luckily we were made tough. :)
 

Arcadian

Ideal_Rock
Premium
Joined
Sep 17, 2008
Messages
7,896
Thank you @Arcadian and I agree. I hope this thread is helpful for others.

So my blood estradiol is 20 (from 5!) with the Biest cream I had been applying which was only 0.25 mg estradiol and 1mg Estriol. I requested my gynecologist to RX at least 2 or 3 mg Estradiol so this is what she prescribed.

My goal is to get my blood levels of estradiol up to at least 70 if possible. I read that is helpful for bone health. Around 60-70.

Do you think I should ask my gynecologist friend today (when we have the telemedicine call later) to up my Estradiol (she might not want to but it's worth asking if you think I should) or should I see how I do on the 2 mg as it is a jump from what I had been taking.

You are right. The only reason I started BHRT is for my bones. I never had any postmenopausal symptoms. No hot flashes nothing. And I take Vagifem to deal with my vaginal health and have been doing that for a few years. Being a woman is challenging business lol. Luckily we were made tough. :)

Asking for more can't hurt, and usually will help a lot considering where you are and where you need to go. Even if you get a little higher than 70, it will not hurt in fact, will help!

I did indeed go through the rough patches of menopause and I'm glad you escaped that!
 

FL_runner

Brilliant_Rock
Joined
Aug 23, 2020
Messages
513
I wanted to follow up with a question, if that’s Ok- for those mentioning bone health concerns, have you been diagnosed with decreased bone density (osteoporosis, osteopenia, etc.) with a DXA scan or other evaluation? I am an endocrinologist and avoid giving specific medical advice over the internet but it’s not a standard recommendation to start hormone replacement therapy after the age of menopause (unless it was early menopause for some reason, and then you have to carefully eval) for prevention of bone density loss, although it can be an adjunct therapy for those already diagnosed with bone loss if they cannot take one of the more potent therapies- there are multiple classes of medications that I would consider before hormone replacement therapy for most patients. Also more detailed evaluation to determine causes of bone density abnormalities beyond age related bone loss. ensuring that vitamin D levels are normal and engaging in weight bearing exercise and strength training are well validated for retaining bone density- I’m sure you’re already doing this but if not incorporate weight lifting 3x a week, doesn’t have to be super heavy.

If you haven’t seen an endocrinologist I would consider! We are definitely “bone people”.

Also for estrogen therapy, just a safety sidebar- unopposed estrogen therapy is believed to lead to endometrial hyperplasia so if you haven’t had a hysterectomy combo therapy with a progestin is recommended to prevent continual buildup of the uterine lining which can then lead to cancer. Just in case anyone is in that situation https://www.cochrane.org/CD000402/MENSTR_hormone-therapy-for-postmenopausal-women-with-intact-uterus
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
44,854
I wanted to follow up with a question, if that’s Ok- for those mentioning bone health concerns, have you been diagnosed with decreased bone density (osteoporosis, osteopenia, etc.) with a DXA scan or other evaluation? I am an endocrinologist and avoid giving specific medical advice over the internet but it’s not a standard recommendation to start hormone replacement therapy after the age of menopause (unless it was early menopause for some reason, and then you have to carefully eval) for prevention of bone density loss, although it can be an adjunct therapy for those already diagnosed with bone loss if they cannot take one of the more potent therapies- there are multiple classes of medications that I would consider before hormone replacement therapy for most patients. Also more detailed evaluation to determine causes of bone density abnormalities beyond age related bone loss. ensuring that vitamin D levels are normal and engaging in weight bearing exercise and strength training are well validated for retaining bone density- I’m sure you’re already doing this but if not incorporate weight lifting 3x a week, doesn’t have to be super heavy.

If you haven’t seen an endocrinologist I would consider! We are definitely “bone people”.

Also for estrogen therapy, just a safety sidebar- unopposed estrogen therapy is believed to lead to endometrial hyperplasia so if you haven’t had a hysterectomy combo therapy with a progestin is recommended to prevent continual buildup of the uterine lining which can then lead to cancer. Just in case anyone is in that situation https://www.cochrane.org/CD000402/MENSTR_hormone-therapy-for-postmenopausal-women-with-intact-uterus

Hi @FL_runner, thanks for chiming in. Yes I have been diagnosed with Osteoporosis via DEXA and TBS.


My endocrinologist is onboard with this before I have to go on Evenity. I am taking progesterone with the estradiol and will be adding testosterone hoping I can tolerate this. Since my Estradiol dose is being increased I might not be able to tolerate it as well as the low dose. Time will tell.

I am doing weight lifting (every other day for 40 minutes a session)and weight bearing exercises (daily) and Vit D3 and MK4.

I might also have secondary hyperparathyroidism (or primary but smaller chance for that one) and am currently being evaluated for that.

It’s been a long process and I appreciate your input. Thanks.
 

FL_runner

Brilliant_Rock
Joined
Aug 23, 2020
Messages
513
Sounds like you have all the right people on your team, @missy!!! It often takes a while to find the right approach for each person, and even then it takes regular reassessment. I’ll have fingers crossed for you.
 

missy

Super_Ideal_Rock
Premium
Joined
Jun 8, 2008
Messages
44,854
Sounds like you have all the right people on your team, @missy!!! It often takes a while to find the right approach for each person, and even then it takes regular reassessment. I’ll have fingers crossed for you.

Thank you so much @FL_runner, that is very kind of you.

If it's OK to ask and it's OK if you aren't comfortable sharing this. What OP meds do you like?

I cannot take oral bisphosphonates due to my past esophagitis and recurring GI issues. I don't like Prolia or Reclast because once it is in your system you are stuck with it even if you have a terrible reaction and with Prolia once you stop you lose it all. Though I know one must follow up with all the bone meds with another bone med. I just don't like that Prolia keeps the old bone and building on that so it seems like the quality of bone with Prolia isn't the best.

I cannot use Forteo or Tymlos due to my having a very high Alk Phosphatase.
I know that doesn't leave me with many options.
My rheumatologist likes Evenity.

Could you share your thoughts? I value your input and will not hold you responsible for anything.
I totally understand if you aren't comfortable sharing though, no pressure and no worries. Thank you.
 

FL_runner

Brilliant_Rock
Joined
Aug 23, 2020
Messages
513
Happy to discuss a bit! I actually do think that for most people a bisphophonate is a great choice- Reclast if there are Gi concerns or if a more potent initial effect is desired. Usually we can treat to a goal density improvement and I like to set a limit on time- for example, 3 years, and then take a holiday with close monitoring. The great thing about bisphosphonates are that the positive effects remain after completing therapy and the density often remains improved for many years. Anecdotally with Reclast I haven’t had a high rate of side effects associated with the infusion.

I tend to consider Prolia more for people with decreased renal function, and that tends to correlate to much older patients- it’s very different when you say “you’ll need to stay on this indefinitely or lose the benefit” at age 55 versus 75 or 80! There’s always the option to use a one time dose of Reclast to “lock in” the bone growth but that’s not always effective if the bone turnover has slowed down.

evenity is another monoclonal antibody that inhibits sclerostin (prolia is a monoclonal antibody with a different target). It works really well for density gain and reduction of fracture risk but also has the drawback of the benefit decreasing over time after the medication course is finished so the trials followed up the Evenity with a bisphosphonate to “lock in” the bone density gains.

for more severe osteoporosis I usually consider “anabolics” like teriparatide (It mimics part of the PTH structure) very potent but only used for a max of two years, and usually contraindicated for high all phos as you said, so that would not be a good choice.

HRT as an adjunct, and potentially continuing after a short course of one of the more intense medication therapies, is a less potent option that does give some benefit, but because the density gain is less it is usually not the first or second line recommendation as a single therapy.
 

missy

Super_Ideal_Rock
Premium
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Jun 8, 2008
Messages
44,854
Happy to discuss a bit! I actually do think that for most people a bisphophonate is a great choice- Reclast if there are Gi concerns or if a more potent initial effect is desired. Usually we can treat to a goal density improvement and I like to set a limit on time- for example, 3 years, and then take a holiday with close monitoring. The great thing about bisphosphonates are that the positive effects remain after completing therapy and the density often remains improved for many years. Anecdotally with Reclast I haven’t had a high rate of side effects associated with the infusion.

I tend to consider Prolia more for people with decreased renal function, and that tends to correlate to much older patients- it’s very different when you say “you’ll need to stay on this indefinitely or lose the benefit” at age 55 versus 75 or 80! There’s always the option to use a one time dose of Reclast to “lock in” the bone growth but that’s not always effective if the bone turnover has slowed down.

evenity is another monoclonal antibody that inhibits sclerostin (prolia is a monoclonal antibody with a different target). It works really well for density gain and reduction of fracture risk but also has the drawback of the benefit decreasing over time after the medication course is finished so the trials followed up the Evenity with a bisphosphonate to “lock in” the bone density gains.

for more severe osteoporosis I usually consider “anabolics” like teriparatide (It mimics part of the PTH structure) very potent but only used for a max of two years, and usually contraindicated for high all phos as you said, so that would not be a good choice.

HRT as an adjunct, and potentially continuing after a short course of one of the more intense medication therapies, is a less potent option that does give some benefit, but because the density gain is less it is usually not the first or second line recommendation as a single therapy.

Thank you so much @FL_runner! I cannot tell you how much I appreciate your weighing in and how greatly I value your advice. Thank you! I wish I could see you as my endocrinologist. PSers not only have the best taste in bling they are the smartest and the brightest.

When I see my rheumatologist in June I hope he is still onboard with trying to get Evenity approved with my insurance company. I know that will be another hurdle. Reading what you wrote about Reclast gives me a bit more hope though as I thought it would be a harsh choice but now I see perhaps I was wrong and maybe it wouldn't be a bad choice.

What are your thoughts on doing Evenity first (if I can get insurance approval) and then following up with Reclast or would it be better to start with Reclast then Evenity?

It does concern me that I am only 55 and have (hopefully) decades ahead of me. I don't want to run out of OP med options.
 

FL_runner

Brilliant_Rock
Joined
Aug 23, 2020
Messages
513
Thank you so much @FL_runner! I cannot tell you how much I appreciate your weighing in and how greatly I value your advice. Thank you! I wish I could see you as my endocrinologist. PSers not only have the best taste in bling they are the smartest and the brightest.

When I see my rheumatologist in June I hope he is still onboard with trying to get Evenity approved with my insurance company. I know that will be another hurdle. Reading what you wrote about Reclast gives me a bit more hope though as I thought it would be a harsh choice but now I see perhaps I was wrong and maybe it wouldn't be a bad choice.

What are your thoughts on doing Evenity first (if I can get insurance approval) and then following up with Reclast or would it be better to start with Reclast then Evenity?

It does concern me that I am only 55 and have (hopefully) decades ahead of me. I don't want to run out of OP med options.

I would consider Evenity followed by Reclast versus just a few years of Reclast- I agree it’s so frustrating when insurance dictates what medications we choose!!!
 

ringo865

Ideal_Rock
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2,463
HRT is not an option for me, having had “hormone receptor positive” breast cancer. Makes me kind of sad that I had been taking birth control pills for 20 years. Now, and for 10 years, I will be taking hormone suppressing medication. However, the effect of hormone suppression is loss of bone density.

When I was first diagnosed with breast cancer, my Vit D level was so low, I had to go on a prescription dose (50,000 iu) weekly for a month. Now, two years later, my oncologist still has me taking 1200 mg Calcium and 2000 iu Vitamin D daily, along with strength/weight training. This combo not only helps slow the progression of my osteopenia, but also reduces the risk of cancer (or recurrence).

Parathyroid glands work to balance the calcium in the blood by communicating with the kidneys, gut and skeleton. When there is sufficient calcium and sufficient active Vitamin D, dietary calcium is absorbed and put to good use throughout the body. If calcium intake is insufficient, or vitamin D is low, the parathyroid glands will ‘borrow’ calcium from the skeleton in order to keep the blood calcium in the normal range. I know you are struggling with thyroid issues, perhaps they are stealing calcium?

I am no doctor, but it seems that six years after menopause would be on the other side of the risk/benefit curve of which to reintroduce those hormones, where the sole menopausal effect you’re trying to remedy is bone density.

Keep up the research though, I’m sure you will find the right combination of treatment for you. xoxo
 

missy

Super_Ideal_Rock
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HRT is not an option for me, having had “hormone receptor positive” breast cancer. Makes me kind of sad that I had been taking birth control pills for 20 years. Now, and for 10 years, I will be taking hormone suppressing medication. However, the effect of hormone suppression is loss of bone density.

When I was first diagnosed with breast cancer, my Vit D level was so low, I had to go on a prescription dose (50,000 iu) weekly for a month. Now, two years later, my oncologist still has me taking 1200 mg Calcium and 2000 iu Vitamin D daily, along with strength/weight training. This combo not only helps slow the progression of my osteopenia, but also reduces the risk of cancer (or recurrence).

Parathyroid glands work to balance the calcium in the blood by communicating with the kidneys, gut and skeleton. When there is sufficient calcium and sufficient active Vitamin D, dietary calcium is absorbed and put to good use throughout the body. If calcium intake is insufficient, or vitamin D is low, the parathyroid glands will ‘borrow’ calcium from the skeleton in order to keep the blood calcium in the normal range. I know you are struggling with thyroid issues, perhaps they are stealing calcium?

I am no doctor, but it seems that six years after menopause would be on the other side of the risk/benefit curve of which to reintroduce those hormones, where the sole menopausal effect you’re trying to remedy is bone density.

Keep up the research though, I’m sure you will find the right combination of treatment for you. xoxo

First of all, I am so sorry you went through/are going through this. My continued best wishes to you for your complete recovery. XO.

My surgeon doesn’t think I have primary hyperparathyroidism with normal calcium. He thinks I have secondary hyperparathyroidism and therein lies the rub. We have to find the cause which is not evident. I’m going for additional tests and repeating tests next week. At that point if it’s still not clear which I have primary or secondary I will be referred to a metabolic bone specialist at Columbia Presbyterian. Of course I wish I had primary as that’s so much easier. Remove the offending parathyroids and cured. Secondary is much more insidious and not curable since it’s not a vitamin D deficiency I’m dealing with. My D is at good levels.

Another medical mystery. Thanks for your good wishes and input and sending you so many well wishes too. XO.
 

missy

Super_Ideal_Rock
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I would consider Evenity followed by Reclast versus just a few years of Reclast- I agree it’s so frustrating when insurance dictates what medications we choose!!!

Thank you! And yes. It’s, imo, a crime that health insurance companies dictate what we can and cannot do rather than our trusted and well educated physicians making the choice with us. If only money wasn’t a consideration I’d go for Evenity in a heartbeat.
 

FL_runner

Brilliant_Rock
Joined
Aug 23, 2020
Messages
513
Thank you! And yes. It’s, imo, a crime that health insurance companies dictate what we can and cannot do rather than our trusted and well educated physicians making the choice with us. If only money wasn’t a consideration I’d go for Evenity in a heartbeat.
It gets so frustrating for me when we have to jump through so many hoops for things that patients really benefit from- like the new generation of insulin pumps that communicate directly with continuous blood glucose monitors and can automatically pause when blood sugar is dropping too low! But then having to spend hours on the phone defending why something is really needed is ridiculous!
 
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