NHS England Hormone Regimen - negative side effects - HELP!!!

[kitten_lover]

Hiya ladies

I have a couple of concerns about my HRT regimen and want to ask a few questions to see if others have experienced the same things as I have, to know how best to deal with this.

Right...So I began self medicating about 15 months ago, increasing from <Not Permitted> to <Not Permitted> of Spironoloactone (Spiractin), and from <Not Permitted> to <Not Permitted> of Estradiol Hemihydrate (Estrofem)  in the first 12 months. I was seeing good results after 12 months, good breast development (I was just about a B cup), soft skin, a good amount of fat distribution to my buttocks/hips as well as around my face. Around the 12th month, I went full time. Around that time, the Gender Identity Clinic in London (Charring Cross) took over my hormone regimen and had changed my medication to <not Permitted> Decapeptyl and <not Permitted> of Estradiol Valerate (Progynova) since.

The side effects, due to the Decapeptyl, for the first month, were almost unbearable. It spiked my testosterone level through the roof! I had to be very careful what I said to who, as I became very aggressive, anxious and depressed for a whole month and I felt barely recognisable to myself. It then calmed down and two weeks later I had a blood test. The results confirmed that my T level was in the correct range, 0.7, and my estrogen levels were at 300, which I understand is slightly below the range for a typical female (400-600).

Now, since the reaction to the Decapeptyl has calmed, it has been around 6 weeks. These are the differences I have experienced: reduction in breast size, I am now an A cup, less fat distribution to my buttocks/hips and to my face. I have however noticed a huge reduction in body hair regrowth, which is a positive result. I'd also noticed a huge reduction in sensitivity to my nipples as well as my genitalia, which I previously had. The pitch had dropped slightly, which was probably only noticeable to me, but this could also be down to having a lower mood. My libido has decreased a lot and I still find it hard to be as perky/happy/alert as I was before having been on this medication. I know the Spirinolactone produced good results however the NHS in England do not prescribe this medication as the Endocronologist believes it to result in breasts growing in sideways directions (also known as the tanner stage in puberty) and becoming "stuck" like that.

I hope this is appropriate to mention this here, since it's a physiological concern I believe it to be ok....it currently hurts a little after having an orgasm, which I'd never previously experienced. 


Can anyone provide advice going forward?


Thank you

Jenna

Mod Edit - Removed dosage information

[Laura_7]

You might convince them to give micronized bioidentical estrogen, which can be taken sublingually.
Its supposed to be less straining on the liver and less causing clotting factors.
Being bioidentical its also supposed to have less side effects.

Well girls worldwide report good breast growth ( no cone form etc) with a combination of spironolactone, bioidentical estrogen and bioidentical progesterone.
Bioidentical progesterone has also anti androgen effects.
https://www.susans.org/forums/index.php/topic,192953.msg1733564.html#msg1733564

Concerning the anti androgen now it might be possible to spread the daily dose in a few small doses instead of two big ones, for more steady levels.

[Dena]

Welcome to Susan's Place. I know you have 14 post but you came in the back door instead of through introductions and appear to have dodged the welcoming crew. There is a bit of information that needs to be attended to.

We issue to all new members the following links so you will best be able to use the web site.

Things that you should read

Site Terms of Service & Rules to Live By	Standard Terms & Definitions	Post Ranks (including when you can upload an avatar)
Reputation rules	News posting & quoting guidelines	Photo, avatars, & signature images policy

[kira21 ♡♡♡]

They should have prescribed cyprotone acetate to protect against the spike of tt,that is standard nhs procedure.  Little surprised they didn't go with Goserelin as the gnrh of choice.

Still,  6 week.  Keep going it should be fine on all aspects of your concerns.  Go to go and ask for a blood test in 2 weeks just to check levels.  Look for t to be about 0.3 and E to be preferably 5 to 6 hundred but definitely over 4.

Keep copies of the results yourself so that you can present them yourself at your next assessment and push far adjustments if you are outside the range I stated.

You want it sorted as soon as possible.  This will give optimal results.

[Rachel]

Hi kitten_lover,

I think if you asked specific questions it would be easier to help.

As your gonads shrink there is some minor pain after sex sometimes. Also when you have an erection after being flaccid for a while it hurts a bit.

Spiro has some side effects I do not like such as dehydration and constipation. You need to drink a lot of water then you pee a lot.  Also you need a lot of salt.

It may be difficult but try to give the doctors HRT regiment a chance. Transition is a marathon and not a race.

[kitten_lover]

They should have prescribed cyprotone acetate to protect against the spike of tt,that is standard nhs procedure.  Little surprised they didn't go with Goserelin as the gnrh of choice.

Still,  6 week.  Keep going it should be fine on all aspects of your concerns.  Go to go and ask for a blood test in 2 weeks just to check levels.  Look for t to be about 0.3 and E to be preferably 5 to 6 hundred but definitely over 4.

Keep copies of the results yourself so that you can present them yourself at your next assessment and push far adjustments if you are outside the range I stated.

You want it sorted as soon as possible.  This will give optimal results.

Hi there

I was prescribed cypertone acetate, but nevertheless the decapeptyl hit me pretty hard.

Thanks for the advice, if I didn't have surgery in two weeks I would have asked for a blood test. However, with the operation coming up I need to come off medication this coming week and so am better off getting a blood test after surgery.

I've been to the doctor's to collect my results but unfortunately they refused to hand them out...I think it's standard practice...and I must go to see my GP for this- which I'll need for my 3rd GIC appointment in December. 

Are you based at Charring Cross? I didn't know they can also prescribe Goserelin?

[kitten_lover]

Hi kitten_lover,

I think if you asked specific questions it would be easier to help.

As your gonads shrink there is some minor pain after sex sometimes. Also when you have an erection after being flaccid for a while it hurts a bit.

Spiro has some side effects I do not like such as dehydration and constipation. You need to drink a lot of water then you pee a lot.  Also you need a lot of salt.

It may be difficult but try to give the doctors HRT regiment a chance. Transition is a marathon and not a race.

Hi Cynthia,

I could just be being too quick to jump the gun....I hadn't before experienced the side effects you'd mentioned from Spironolactone. Perhaps it is a drug that just works for me.... It's a shame the doctors here won't administer it though...surely our gender identity clinics aren't any more advanced than they are in the states and that is what I've heard most trangender girls being prescribed over there... I'll try and stick with it for now...but I feel it's going to be heck of a rollercoaster in upcoming weeks

[kitten_lover]

Welcome to Susan's Place. I know you have 14 post but you came in the back door instead of through introductions and appear to have dodged the welcoming crew. There is a bit of information that needs to be attended to.

We issue to all new members the following links so you will best be able to use the web site.

Things that you should read

Site Terms of Service & Rules to Live By	Standard Terms & Definitions	Post Ranks (including when you can upload an avatar)
Reputation rules	News posting & quoting guidelines	Photo, avatars, & signature images policy

Hi,

I had no idea there was another entrance...anyways, glad to be a part of this online community.

[Dena]

Hi,

I had no idea there was another entrance...anyways, glad to be a part of this online community.

There are multiple back doors and I came in through the voice section of the web site. They picked me up pretty quick and flashed me with a set of the rules. It's not important where you make your first post as it's only important that you are happy here.

[kitten_lover]

There are multiple back doors and I came in through the voice section of the web site. They picked me up pretty quick and flashed me with a set of the rules. It's not important where you make your first post as it's only important that you are happy here.

Ahh right, sorry I misunderstood you...I thought you meant you had to be referred to access the website.
Thanks, I've read through the rules, I can see where I violated the hormonal medication post.... :O

[Hyperduck_23]

Hi Cynthia,

I could just be being too quick to jump the gun....I hadn't before experienced the side effects you'd mentioned from Spironolactone. Perhaps it is a drug that just works for me.... It's a shame the doctors here won't administer it though...surely our gender identity clinics aren't any more advanced than they are in the states and that is what I've heard most trangender girls being prescribed over there... I'll try and stick with it for now...but I feel it's going to be heck of a rollercoaster in upcoming weeks

It's my understanding that the NHS tend to use Gosrelin Acetate as the first option as it's more effective and well tolerated than the other options; that's what they told me and it is what I'm now prescribed (along with the Estrodial & Dutasteride).

Spironolactone used to be used in the UK but not anymore. It is still used in the US medical services and also used by a lot of self medicating types as it's easy to get hold of and administer. I think (feel free to correct me!) that it's significantly cheaper than the other options available, which could also be a factor for people prescribing in the US and insurance companies, though I'm not fully sure this is the case.

The Gosrelin isn't something you can self administer easily as it comes in its own syringe and I have a specially trained nurse to administer it....hurts like crazy as well, I doubt I'd be able to do it myself even if it was an option and I wanted to!

[iKate]

Spiro is used in the US because it's well tolerated and FDA approved. Cyproterone acetate is not. There are others like flutamide and bicalutamude which are also used.

[kira21 ♡♡♡]

Goserelin is used in the UK or sometimes buserelin or other gnrh,  as they are widely recognised as being much better than spiro in terms of side effects and complications. Convenience is also an issue with one injection covering 3 months.  It is much more expensive, which is why the US doesn't use it, having a system which is more financially motivated.

[kira21 ♡♡♡]

I would tell your GP that you have been requested to bring copies of your blood results With You along to your next appointment I can't imagine that they would say no to that.

After that just try and ask them for them every time and they will probably get in the Habit of giving them to you whenever you need them.   I have copies of mine from the beginning of my transition.

[iKate]

Goserelin is used in the UK or sometimes buserelin or other gnrh,  as they are widely recognised as being much better than spiro in terms of side effects and complications. Convenience is also an issue with one injection covering 3 months.  It is much more expensive, which is why the US doesn't use it, having a system which is more financially motivated.

That's part of it but the FDA acknowledges Spironolactone can be used for transgender hormone treatment and also in cis women with PCOS. Goserelin doesn't have that designation here. And for most people it works fine, and yes it is cheap, especially if you're without insurance and don't qualify for Medicaid.

[Richenda]

I had a lot of problems with Spiro and when I mentioned this to my GP, who seemed pretty clued up, she replied that it's a nasty drug with all sorts of side effects that they don't like using. I was interested as it tallied with my experience.