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[Alicess]

Hi,

Like some of you HRT doesn't do anything for me, it not only makes my symptoms much worse but I also experienced symptoms I never had before. And everytime I have tried it it makes my skin sag in just a few days. And there's no going back. So like you I'm desperate to find a solution because iit's been and remains a constant nightmare.

My SHBG is very high   >200
Free Testosterone:      not calculable

I found this interesting information:
 https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1682006/#!po=51.7857

Page 15: SHBG binding and a decrease in bioavailable estrogen is often the reason for lack of response ( to HRT )
SHBG binding to estradiol is 40% and 60% to albumine
Tansdermal estradiol 50 uq raises SHBG by 12%
Albumine may also be important to check because it binds less tightly to estrogen and it is a important enzyme.

Testosterone, Levonorgestrel ( Mirena) and Tibolone decrease SHBG, some other progestins do too.

I already mentioned this in another thread; progestogens downregulate estrogen
Page 11: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1924982/

According to Prof.Studd women can use between 5mg to 12 mg testosterone a day.

Apparently side-effects like acne, facial hair and male-pattern hairloss are caused by testosterone's conversion to DHT, which is
a 5 times more potent androgen than testosterone. Some physicians even think we need more testosterone to overcome conversion to DHT.
I don't know if the above is true, I didn't find any research yet.

I do believe testosterone is more important than previously assumed. It appears women have more testosterone than estrogen in blood circulation and testosterone is the precursor to estrogen

Also found this information about testosterone:

https://www.sciencedirect.com/science/article/pii/S0378512213000121

Hope I made some sense. Bit fuzzy. And please excuse my English, I'm not a native English speaker.

[Alicess]

 Hi Birdy,

Sorry I should have explained my situation a bit more but I'm tired and just wanted to share this information with others because so many women are struggling for answers.

If been on BCP's from the age of 14, I'm 52 now. Always had symptoms which ressemble menopausal symptoms. Severe anxiety, depression, fatigue,
heat intolerance etc even sometimes  night sweats, hot flushes and incontinence. When I tryed to stop BCP's I had my first episode of cluster headache When I started again cluster headache dissapeared, But a few years later it came back while on BCP. When I was 48 my GP prescribed Microgynon, which is a more androgenic BCP and most of my symptoms and more importantly the cluster headache dissapeared. It finally felt like I was me again! If that makes sense.
Only downside; I started to loose my hair very quickly and still felt very gloomy and anxious in the early morning. So I went to a gynaecologist and she prescribed 75 estradiol patches and 200 Urtogestan daily. I still remember hearing alarm bells ringing but I didn't listen... I've only used the patches and Urtogestan for 3 weeks but it changed my life completely. List of symptoms I experienced is too long but I felt like I was going crazy, ears started ringing, upper legs swollen up. Had to go to ER because of suspicion of thrombosis. And suddenly there was some loose skin on my belly and my breasts sagged. I started BCP's again and it helped a bit with swollen legs so I could walk a little better. But nothing else changed. And every time the gynaecologist put me on yet another kind of bioidentical hormones it became worse and worse. With the last treatment, oral estradiol 1,5 mg and a progestin  I grew a beard on my chin, became so depressed I was only thinking of how I could end it all, sweating and hot flashes all day and night. And cluster headache came back with a vengeance. I'm incontinent now and yes, my skin sagged! I couldn't believe it at first but I always had tight skin and every time I used bioidentical hormones in a couple of days my eyelids sagged, my jawline etc My hands look like a 80 year old woman"s hands. My belly is now hanging on my upper legs.(And I have all 34 (?) symptoms of menopause)  Guess my body tried everything to up my estrogen because I don't have much subcutaneous fat left. And I have always been slender to begin with. People often don't recognize me because I look so different. They ask me If I am ill.

I guess I have tried every BCP available but they only keep cluster headache at bay. Even tried ethinylestradiol alone but no response whatsoever. While still on BCP I've tried testosterone ( on my one, as I feel physicians just can't help me and I'm really at a loss) It made my hair stop falling and my eyelashes looked great :-) but everything else just became worse again. And no libido or relief of VA.

I don't want to discourage or scare anyone, I believe I react differently because I've been on BCP's for so long. BCP's raise SHBG dramatically. And maybe my hormonal system doesn't function anymore because it's been surpressed for so many years. I do believe SHBG is very significant

To answer your questions regarding which bioidentical hormones; 75/ 200 /400 mg patches. Estradot, Systen and Demestril .Oestrogel 2 pumps up to 8 pumps. Testogel 5 mg up to 10 mg

Albumin, like SHBG, binds to estogen among others. Explaining albumin is difficult, better read it yourself on Wikipedia.

https://en.m.wikipedia.org/wiki/Albumin

[Alicess]

Yes, Mirena ( Levonorgestrel) does have anti-estrogenic properties, like most progestogens. So you need to counteract with estrogen but not too much as estrogen raises SHBG. And high SHBG means low testosterone. It's all about a very delicate balance!

 Not every woman will convert testosterone to estrogen easily.It depends on aromatase; the conversion of testosterone to estrogen. If I understand correctly aromatase takes place in fatcells, among others,  so if you have more fat- storage you will convert more testosterone into estrogen.
Some women even take testosterone alone, without estrogen, and feel fine.

You're not overthinking at all. And you're right. It could be as easy as just add testosterone to lower SHBG and there will be more estrogen available too
But I suspect my body doesn't make much estrogen on its own anymore. Ethinylestradiol raises SHBG but when you stop taking BCP SHBG remains high. For months or years and sometimes forever. If estrogen is already very low will testosterone not decrease it further? I don't know.

It's complicated and headspinning.

[Hurdity]

Hi Alicess

 

It is indeed very complicated and you cannot predict what will happen to all the different hormones when you add extra hormones exogenously! There is insufficient known about how it all works!

Only clinical trials can tell you for example in a population of women if you add X hormones, the values of these hormones Y and Z will increase or decrease.

We just know some general principles.

If you want to prevent a large effect on SHBG then transdermal oestrogen is best. Oral oestrogen is known to increase SHBG (considerably) which binds free testosterone making it unavailable for use by the body. Because T has a higher affinity for SHBG than oestrogen then it is this principle which is usually the determining factor. As far as I understand it - and gynaecologists too - we are concerned with SHBG because of this, because reduction in available testosterone is what leads to symptoms that we are concerned about.

The Mirena cannot completely prevent oestrogen production, although in women for whom ovulation is suppressed then less oestrogen will be produced.

All women will convert testosterone to oestrogen through aromatisation - that is how it is produced! That is not to say that all exogenous testosterone will be converted though - otherwise there would be no point taking it.

Hurdity x

[Alicess]

Thank you,. Birdy, for your kind words. I was feeling sad after writing down my story but you've lifted my spirit🌷 You're not frustrating me at all.

I'm not sure myself but ethinylestradiol in BCP is a very potent estrogen. 20 times more potent than estradiol in patches I believe Although it raises SHBG it isn't bound by SHBG. That makes a huge difference.
I still can't figure out why ethinylestradiol no longer doing its job anymore. The gynaecologist did some metabolite test from urine an told me there was an surplus or overload of estrogen in my urine. Maybe I'm flushing it all out?

I've read somewhere that SHBG can replace hormones but I don't know what that means exactly. Attaching to the wrong receptors?

Went to several doctors but nobody knows the answer or a solution So I will search for answers myself :-). Maybe I could try tibolone..it lowers SHBG.

Did you find a solution after Mirena? Are you feeling well?

[Alicess]

Hi Judith,

Thank you for having me! I'm so glad I found this forum. I really, really admire you ladies for trying to find answers yourself and inform, educate and support each other without judging. Feels like a warm bath.

I'm wondering; if (total) testosterone iis very low and it's needed to ' make ' estrogen does this also mean that estrogen will be lower too? Is testosterone the precursor to all estrogen our bodies make?

[Alicess]

Sorry, I wrote Hurdity but didn't. check what came out....

[Alicess]

I feel for you, Birdy, that's awfull. I have all those symptoms myself and it feels so scary. Especially because you can not control it at all.
I do not want to imply I know the solution but did you ever try testosterone? Or maybe less Urtogestan?

In the link about information regarding testosterone it says;

Testosterone and the pro-androgens decline gradually with aging in both sexes. Pre and post-menopausal women, and aging men, may experience symptoms of androgen deficiency including dysphoric mood (anxiety, irritability, depression), lack of well being, physical fatigue, bone loss, muscle loss, changes in cognition, memory loss, insomnia, hot flashes, rheumatoid complaints, pain, breast pain, urinary complaints, incontinence as well as sexual dysfunction. These symptoms of androgen deficiency are becoming increasingly recognized in women, and treated with T therapy

[Alicess]

I never came across anyone with the same reaction on bioidentical hormones like me yet. But I did read on US- boards from women who felt worse on BHRT but so did  on this board. I'm running out of options and I can barely function anymore. I'm just so afraid to try bioidentical hormones again. It's strange; my mind is so foggy, my thoughts are racing and all over the place , I think you know what I mean, but when I'm considering starting bioidentical again it's like a little voice inside me screams; no! Don't no if it's my intuition, the voice of reason or if I"m just losing my marbles
Maybe I should try Tibolone and stop taking BCP. Tibolone lowers SHBG and when that happens maybe I can try oestrogel and/or testosterone again.
A lot of maybe's...

It sounds like your symptoms also became worse when you started bioidentical. Do you benefit from oestrogel at all? If you have all these terrifying and exhausting feelings and you can't get a good night's sleep it's even harder to cope. I feel bad for you. Do you have a capable physician? Is it really necessary for you to take Urtogestan continuously?  I feel so frustrated, we shouldn't have to feel like this!