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missy

Super_Ideal_Rock
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Hi Missy:

Ooo this is probably not going to be easy or even simple. with Compounded, like with anything thats handmade. they can be off by a certain % each time its made. Even though they use a recipe its just the way it goes.

With non compounded you should be able to get a minimal expected dose, but you're right, it will be pricey. . the issue is that with creams and gels, they are depending on how much you put on and where, if you're putting them on under clothing, is it rubbing off on the clothes, etc.... I could never get where I wanted to on the cremes and moved to tablets. While everyone will not do well on them, I personally feel if you do not have markers for getting blood clots, then you'll be fine with a tablet. Remember its not a one size fits all.

The breakthrough bleeding is

If you go with an injection for T, cyprionate is what I know thats available in the US and what I use. I think there's various kinds I just don't know which ones. And I had an issue with T creme. (maybe the base). 10ml /week is low but might be a good starting point to work from. Also If your T was at zero, and now at .22, then you're moving the needle but you're going to have to use more, point blank. is it converting enough with a creme? sounds like possibly not! Some women also take DHEA (I take 50ml daily) but also depends on how sensitive you are to it and it can convert to T for many women (not a lot but some)

I personally won't do high T for me small amounts are best anyway considering my medical history.

On my last test, my T was low but also, my Vit D was low (lower than it should be!!) And Serum Ferritin is high (like really high) so I got something going on but who knows what....

Thanks @Arcadian yeah nothing is simple. Just another puzzle to try to figure out without harming myself in the process. I am also converting the Estradiol to way too much Estrone so just another complication. I cannot do DIM because my estradiol isn't high enough but oooh that Estrone.

I agree with you that I do not want to do much T...just enough to get me to a decent bone healthy range. Nothing crazy. As for oral E I cannot do it as I have a mutation that makes me prone to blood clotting. Or else yes I would definitely try that route. So for me it's gels or creams or injections which I would consider for E as I have read it is a very stable way to go.

I just hope the breakthrough bleeding stops...it's been over 6 weeks and we don't have any answers yet. I might have to endure an invasive biopsy but not rushing into it just yet. Hoping the change to Estrogel will stop it. Just waiting on the pharmacy as they don't have it in stock and had to order it. I cannot imagine trying to get three bottles of this a month but if it works it will be worth the expense and energy. But if it works is a big if.

Why aren't you doing E injections if you don't mind me asking since you are already doing T injections...just trying to evaluate all my options and I want to know the good, the bad and the ugly. :/

As for you...If your serum ferritin is high you probably know that indicates inflammation. Do you know your iron profile? If your ferritin is higher than your total iron definitely inflammation. I find Astaxanthin helpful for bringing down inflammation. 12 mg a day.

As for D I like mine around 60 but there are so many different schools of thought. I was taking D before it was popular to take it back in the early 2000s. I take it with a high fat meal and it gets absorbed pretty well so far. You probably know this already I am sure but D3 and take it with a high fat meal. General rule of thumb for every 1000 of D3 you add you increase your blood levels by about 10 ng/ml. Approximate rule of thumb and of course test and retest to make sure you aren't going too high. I take 5000 D3 daily to maintain 60 ng/ml.

Thanks again for your help Arcadian. Good luck to you on your hormone (and beyond) journey.
 

Arcadian

Ideal_Rock
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of course and same to you. I AM inflamed unfortunately, I can feel it and that comes from the still undiagnosed autoimmune issue that I have. its bad when you actually FEEL the inflammation. I will look into the supplement, thank you very much!!

My GP of course saw these tests and we had a teledoc call on it this afternoon. She's wanting me to take high dose D3...like I don't do that already...lol And my numbers should be higher but they're well under 30. Thats on 1400UI a day! After discussion today I've been moved to 25,000UI a day and will retest after 6 weeks. Aside from a few weird numbers like with ferritin, D is the one that sticks out the most.

I take oral E because its easier for me to control (not to mention its also really cheap!) My past cancers were estrogen driven, so using oral route helps me to know what I'm getting and how much. I wish I was more confident about the injection because it would be easy enough to do. My T amount is pretty small so we worry less about that than E. In general on high enough dose of T, it can convert to E. My dose isn't really high enough for that.
 

oakleaf

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Hey Missy, you should be able to get 1 bottle of the Estrogel with your insurance each month, this coupon will help bring the cost down. https://estrogelsavings.com/.
You will need to use the GoodRx coupon for the other 2 fills. Your insurance likely won’t pay for that high of a dose because the medication was not approved by the FDA at that dose, and using that much per month is considered off label use.
 

missy

Super_Ideal_Rock
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Hey Missy, you should be able to get 1 bottle of the Estrogel with your insurance each month, this coupon will help bring the cost down. https://estrogelsavings.com/.
You will need to use the GoodRx coupon for the other 2 fills. Your insurance likely won’t pay for that high of a dose because the medication was not approved by the FDA at that dose, and using that much per month is considered off label use.

Thank you so much for chiming in @oakleaf79. I did use a savings card. I always search for a savings card for all my meds that are not covered or that have a high copay. There are many helpful savings cards out there.


The first savings card I used for Estrogel was no longer active but the next day I found another one and the pharmacist credited me the difference. Every little bit helps for sure. Just crazy that the dose approved by the FDA is super low.

In Canada and Europe their Estrogel is double the size and a one month supply is 64 pumps whereas in the USA the bottle is 30 pumps for a one month supply. In fact one of my Canadian friends said that any number of bottles is covered per month. They don't question it and they give her as many as she needs and also before her month is up they will refill it again.

I also use Good RX for the meds where my insurance denies coverage but Good RX will only cover one bottle so if I wanted three pumps monthly (3 bottles) it would be something like $450 per month just for my Estrogel. Ouch. If that were the only med I was paying out of pocket for it would be fine but since I am on other (more expensive) meds not covered I might just try 2 bottles a month and see how I do. Right now I am still waiting for my second bottle of Estrogel from the pharmacy where I used the Good RX card so I haven't even started the Estrogel yet. I am still using my compounded Estradiol creams. If it continues to be difficult to get even just 2 bottles of Estrogel a month I might have to rethink my strategy. I went to a few pharmacies yesterday and none of them carry Estrogel. Right now I am relying on my local pharmacy for one bottle and Walgreens for the other.

There is a huge difference in healthcare for men vs women when it comes to the sex hormones and sex in general in the USA and it is as I see it incredibly discriminatory.

I will get off my soapbox now but did want to share my thoughts about that. Viagra is covered with all health insurance plans I am familiar with but appropriate doses of hormones to give women their lives back not covered. Not to mention how difficult it is to find local options for women's sex hormone meds. Something is quite wrong here. IMO.

1237393zp18x6fdqm.gif


Anyway thank you and I hope if anyone is silently following along that the info shared in this thread is helpful. One of the reasons I am sharing this publicly is if it can help anyone else. I know this is a big problem for many women. As we get older it is a fact that our hormones decrease down to almost zero especially Estradiol and we need Estradiol for heart, brain and bone health and just to feel good and well. And progesterone and testosterone too.
 

missy

Super_Ideal_Rock
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@Arcadian may I ask for your input please. I’m doing E and T injections. My total testosterone is 263!!! But free t is only 1.9 due to high SHBG which unfortunately cannot be lowered. It’s just high for me. Maybe it’s the liothyronine or maybe the estradiol but even before bhrt my SHBG was super high.

My question is this. Should I concerned about such a high total t or concentrate on the free t? I have been researching and there are different schools of thought. My bhrt provider wants to increase my t. No thanks. Lol. I would appreciate your input. Thanks. :)
 

Arcadian

Ideal_Rock
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@Arcadian may I ask for your input please. I’m doing E and T injections. My total testosterone is 263!!! But free t is only 1.9 due to high SHBG which unfortunately cannot be lowered. It’s just high for me. Maybe it’s the liothyronine or maybe the estradiol but even before bhrt my SHBG was super high.

My question is this. Should I concerned about such a high total t or concentrate on the free t? I have been researching and there are different schools of thought. My bhrt provider wants to increase my t. No thanks. Lol. I would appreciate your input. Thanks. :)

Thats high but not absurdly so. Do concentrate on total T, and reduce T if you feel you're having side effects. I only look at the minutia numbers if I'm feeling not so great. Some can handle much higher T and the provider probably is going for higher because higher T can convert to E if your E numbers are not high enough and, if you are still reporting symptoms associated with lower T, they'll raise you to see if that will alleviate them. There's no exact science for women and not a one size fits all type of thing either.

How does your liver/kidney values look? if they look good, don't worry too much about SHBG. How about thyroid? I recall you having lots of issues there. If you've seen them out of whack, thats the thing to discuss with the provider. SHBG in women CAN be because of high T but you're not really necessarily that high of T for being on BHRT.

If you're taking E and the numbers are good, no need to take more E unless you are not getting good benefit from that.

Some of us are just weird. Right now my Progesterone is 8.9 and I'm not even ON any.... which is great! I need them to be high because when low I really don't sleep at all. I mostly go by what I feel, even when I see the blood tests.

If you feel good, and those numbers look good, stay where you are for another 6-8 weeks or until your next labs. Are you taking a mix of B vitamins? if not, good time to start and see how you're feeling (the good about many is that you piss out whatever your body doesn't need!) I take Solaray Mega B-Stress and will take 8 a day if needed. (sometimes I do need that) I'm currently on vit D shots to get my numbers up (thats a whole other story.)

One of my friends took me to a spa and we did a vitamin B drip...my goodness I felt on top of the world for a week....lol I wish they weren't so expensive to do!

Take more T ONLY if you're not feeling that great at the current dose. As you're doing injectable, you have the option to pull back pretty quickly if its too much.
 

missy

Super_Ideal_Rock
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53,978
Thats high but not absurdly so. Do concentrate on total T, and reduce T if you feel you're having side effects. I only look at the minutia numbers if I'm feeling not so great. Some can handle much higher T and the provider probably is going for higher because higher T can convert to E if your E numbers are not high enough and, if you are still reporting symptoms associated with lower T, they'll raise you to see if that will alleviate them. There's no exact science for women and not a one size fits all type of thing either.

How does your liver/kidney values look? if they look good, don't worry too much about SHBG. How about thyroid? I recall you having lots of issues there. If you've seen them out of whack, thats the thing to discuss with the provider. SHBG in women CAN be because of high T but you're not really necessarily that high of T for being on BHRT.

If you're taking E and the numbers are good, no need to take more E unless you are not getting good benefit from that.

Some of us are just weird. Right now my Progesterone is 8.9 and I'm not even ON any.... which is great! I need them to be high because when low I really don't sleep at all. I mostly go by what I feel, even when I see the blood tests.

If you feel good, and those numbers look good, stay where you are for another 6-8 weeks or until your next labs. Are you taking a mix of B vitamins? if not, good time to start and see how you're feeling (the good about many is that you piss out whatever your body doesn't need!) I take Solaray Mega B-Stress and will take 8 a day if needed. (sometimes I do need that) I'm currently on vit D shots to get my numbers up (thats a whole other story.)

One of my friends took me to a spa and we did a vitamin B drip...my goodness I felt on top of the world for a week....lol I wish they weren't so expensive to do!

Take more T ONLY if you're not feeling that great at the current dose. As you're doing injectable, you have the option to pull back pretty quickly if its too much.

Thank you so much @Arcadian, I really appreciate your input.

My free T3 is the best it has ever been which surprised me since my Estradiol is increasing. My free T3 was 3.9. My free T4 is low (0.7) but that is because I am taking more liothyronine than T4 meds since I don't convert. I feel OK. I am grateful my endocrinologist didn't freak out as he doesn't usually RX Lio and only does it for me and he is very hesitant about it. But he regards me as a colleague and to that end I am thankful because if I couldn't get lio I would be in trouble. But I digress.

I feel fine and have not noticed any difference yet with the E and T injections.

Wow that is a great P level you have, good for you! That is a big challenge for me at the moment and has been since April. More on that below.

I am still unfortunately having breakthrough bleeding but I am working on that. I started (TMI alert) rectal Progesterone and I am hoping that will make a difference as it bypasses the liver and gets absorbed directly. My blood levels of P are too low to be uterine protective. I am taking 700 mg P right now (100 rectal, 200 SR OMP, 200 RDT twice a day) and that just seems like a lot. I am working hard to stop the breakthrough bleeding. I did have 2 transvag and abdominal ultrasounds and all is OK. I think the bleeding is just from me not absorbing P. Hence I am trying different methods of delivery for P.

I will decrease T a bit to 5mg twice a week as I think that is a good dose and recheck blood in a month. I increased my E injections to .7 mg twice a week (blood E was 87) but dropped the cream (was on cream during the transition to injections until my blood levels stabilized). So I am a work in progress.

Yeah my SHBG was high before I started BHRT.

I don't know my latest AST and ALT results as for some reason they didn't come in yet. 2 weeks almost. Weird. So I will keep an eye on that, thanks.

I have been supplementing with B vitamins for decades and when I found out I have the MTHFR C667T mutation I started methylated vitamins. My B levels are OK but folate off the charts no matter what I do and my ferritin super low. Iron highish. Nothing I do helps my ferritin and I chalk it up to my defect and despite treating I still cannot get it higher. My endocrinologist feels I should just let that be.

Your spa trip sounded heavenly. One day, after the pandemic is over that is exactly what I want to do. Canyon Ranch Spa here I come...wanna join me :)

Thanks again Arcadian and I hope you are doing well and feeling good.
 

missy

Super_Ideal_Rock
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FYI Excellent book.
It’s in PDF form. Free if you don’t want to get the hard copy.

Not sure this will work since I can’t attach it per se. Let’s try.

https://www.frailproof.com/FP.pdf
 

Arcadian

Ideal_Rock
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@missy, I think you're on the right track to move to injectables if you aren't getting relief in other ways.

And as much as I want to stay on pills for E, I will move to injectables as its harder to find my E tabs locally and because the doc would prefer me to do so because of the high ferritin on my last few blood tests. I'm thankful that my insurance will still cover it regardless! My doc says that I may have to also end up upping the thyroid dose as delivery systems for injectables are a bit different, but, we'll see where I land, I won't change that right now.

I'll be starting off low at 10 units twice a week then titrating up if needed. My E is stable but lower because of my past medical history, but, I do feel good. I'll start on it soon as it gets here (tomorrow...yikes) but, will stick it in the same needle as the T. I worry about E getting too high going this route though but was assured that we'll do a few additional blood tests to make sure it dosen't.

If the move to injectable E changes that blood ferritn to something close to normal, I'll know my culprit!

we're all quite the work in progress it seems.
 

missy

Super_Ideal_Rock
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@missy, I think you're on the right track to move to injectables if you aren't getting relief in other ways.

And as much as I want to stay on pills for E, I will move to injectables as its harder to find my E tabs locally and because the doc would prefer me to do so because of the high ferritin on my last few blood tests. I'm thankful that my insurance will still cover it regardless! My doc says that I may have to also end up upping the thyroid dose as delivery systems for injectables are a bit different, but, we'll see where I land, I won't change that right now.

I'll be starting off low at 10 units twice a week then titrating up if needed. My E is stable but lower because of my past medical history, but, I do feel good. I'll start on it soon as it gets here (tomorrow...yikes) but, will stick it in the same needle as the T. I worry about E getting too high going this route though but was assured that we'll do a few additional blood tests to make sure it dosen't.

If the move to injectable E changes that blood ferritn to something close to normal, I'll know my culprit!

we're all quite the work in progress it seems.

Good luck! I think injections are the most stable delivery form fwiw.

I’m still dealing with breakthrough bleeding and it’s becoming the bane of my existence but I’m not giving up.

We are a work in progress and one thing we have in common is tenacity. If you have a chance read Scott’s book. The one I linked above. It is quite good.

FYI I am injecting 0.7 my E twice a week and 6 mg T twice a week and my blood E levels are exactly where I want them to be.
 

missy

Super_Ideal_Rock
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@Arcadian just a quick update.

My telemedicine provider quit the practice and with her she took the licenses for most of the states. So all of a sudden we lost our HRT provider. Just like that.

Fortunately I was able to join your telemedicine group and had my initial eval yesterday and it went well. So now I just wait for the meds.

I am sad my previous provider quit as I really liked her but the new provider seems nice too. Just wanted to say thank you because you were one of the people who recommended them to me.

How are you doing and how are the injectables working out for you? Hope all is going well.
 

PinkAndBlueBling

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Ugh, @missy, I can't believe all you've gone through! If there's a side effect or any issue, it seems you're the candidate to get it. :(2 There's so much out there and we're just guinea pigs at the end go the day. I tried the gels that you can't get wet for a few hours after applying (not great in summer), the subdermal pellets that got infected after insertion, the patches with adhesive I was allergic to, etc. I don't even know why I tried all that crap, when in the end I just took pills. :confused: I was done with breakthrough bleeding and polyps so I had a hysterectomy last December. Easy peasy. I should've had my bladder leakage fixed, too. Oh, the places I've peed! :lol-2:

Wishing you the best with this! You are a trooper, and appear to be so positive even though you are regularly thrown a curveball. Hugs sent your way!
 

Arcadian

Ideal_Rock
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@Arcadian just a quick update.

My telemedicine provider quit the practice and with her she took the licenses for most of the states. So all of a sudden we lost our HRT provider. Just like that.

Fortunately I was able to join your telemedicine group and had my initial eval yesterday and it went well. So now I just wait for the meds.

I am sad my previous provider quit as I really liked her but the new provider seems nice too. Just wanted to say thank you because you were one of the people who recommended them to me.

How are you doing and how are the injectables working out for you? Hope all is going well.
I'm so sad about that Missy!

But I think you'll like them as they're really easy going, very patient oriented.

I work with Michael as I don't need a lot of hand holding. My injected levels are low compared to some, but according to last bloods and how I feel, things are good my body is responding very well. I have some anxiety but minimal, and I wake up more because the dogs are moving around than from that (and back pain but thats a whole other issue). Unless I go higher doses I will have some of that to manage, but I've definitely got a happier outlook.

I also had moved to pseudo keto diet because I started to get carb bloat really badly and because I produce way more insulin than the average bear (glucose levels would start crashing after meals as soon as I reach high 90's).

So that meant being put on metformin. That surprised me a bit as my A1C is 4.3 and my fasting glucose is in 70's, but, that crashing thing...for the birds + I was having some serious pancreas pain when I would crash.

I have really only a couple of things to address at the next appointment , 1 being the higher TSH. The other is Vit D is higher than it was but not really high enough though I did 50,000IU weekly of injectable D.
 

missy

Super_Ideal_Rock
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I'm so sad about that Missy!

But I think you'll like them as they're really easy going, very patient oriented.

I work with Michael as I don't need a lot of hand holding. My injected levels are low compared to some, but according to last bloods and how I feel, things are good my body is responding very well. I have some anxiety but minimal, and I wake up more because the dogs are moving around than from that (and back pain but thats a whole other issue). Unless I go higher doses I will have some of that to manage, but I've definitely got a happier outlook.

I also had moved to pseudo keto diet because I started to get carb bloat really badly and because I produce way more insulin than the average bear (glucose levels would start crashing after meals as soon as I reach high 90's).

So that meant being put on metformin. That surprised me a bit as my A1C is 4.3 and my fasting glucose is in 70's, but, that crashing thing...for the birds + I was having some serious pancreas pain when I would crash.

I have really only a couple of things to address at the next appointment , 1 being the higher TSH. The other is Vit D is higher than it was but not really high enough though I did 50,000IU weekly of injectable D.

I had my initial with Michael. My friend Diana recommended him as he’s easy going and that’s my preference. I like his southern accent but admit I had a bit of trouble understanding every word lol. I need subtitles when we watch movies so that’s definitely my issue.

I hope your concerns are addressed to your satisfaction at your next visit! And thanks for your encouraging words. I generally don’t like change but perhaps it will be for the best.

As for vitamin D3. I’m sure you’re doing
this but just to make sure. Take it with a meal for best absorption and make sure it’s D3.

Hugs to you Arcadian. ❤️
 

missy

Super_Ideal_Rock
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53,978
Ugh, @missy, I can't believe all you've gone through! If there's a side effect or any issue, it seems you're the candidate to get it. :(2 There's so much out there and we're just guinea pigs at the end go the day. I tried the gels that you can't get wet for a few hours after applying (not great in summer), the subdermal pellets that got infected after insertion, the patches with adhesive I was allergic to, etc. I don't even know why I tried all that crap, when in the end I just took pills. :confused: I was done with breakthrough bleeding and polyps so I had a hysterectomy last December. Easy peasy. I should've had my bladder leakage fixed, too. Oh, the places I've peed! :lol-2:

Wishing you the best with this! You are a trooper, and appear to be so positive even though you are regularly thrown a curveball. Hugs sent your way!

Aww thanks so much. I really appreciate your kind words. And thanks for the hugs. Hugs to you too. I hope all is going well with you. ❤️
 

missy

Super_Ideal_Rock
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53,978
Not sure if I added an update here and forgive me if I already shared this but after correcting my hormone levels and my secondary HPT I successfully reversed my osteoporosis and my bone health is now considered to be of normal bone density and even my bone quality has improved. Just wanted to encourage anyone else dealing with this that you too can reverse the disease process if you address your specific causes. Wishing you good bone health :)


Just to add it was 100% worth the challenges I faced along the way. And do not mistake this...it is a journey and it is not easy but take it one day at a time because good health is priceless and nothing worthwhile is easy. Remember that and do not give up. With persistence and patience you too can get to where you need to be
 
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