The world according to Sarah

[Stottie Girl]

Well I was on Spiro up until a few weeks ago. I had an adverse reaction (heart issue) so I stopped it altogether for safety. It might have something to do with that to be honest. I'm certainly not restarting it!

[tammy753]

I've just got the all clear from bloods and scan. No clots, perfectly healthy on that front woohoo!

Now it's up to my GP to work out what actually is wrong with me so I guess I will never find out ha ha!

The GP's receptionist has contacted me to ask me to come in and give bloods on the 19th August. That sounds like it's my normal GP service resuming lol! I'll bet there won't be anything. wrong with my leg by then! They have not asked me to come in for an appointment to talk to them though. I have mixed feelings about that.

Thanks is great news! Maybe they will see that you are on HRT and give you a prescrption.

[Stottie Girl]

Thanks is great news! Maybe they will see that you are on HRT and give you a prescrption.

It's theoretically possible but highly unlikely as GPs are hugely risk averse over here, apparently they might offer to monitor bloods, they now MUST refer me to the local gender identity clinic (6.5 years wait!) but it does mean I should be able to have a discussion with them over entering into a shared care agreement with a private endocrinologist. IF I manage to get an appointment with them.

[Northern Star Girl ✅]

Dear Sarah: 
AFAIK, Spiro is protocol for many heart conditions, usually a daily low dose.
Danielle

Well I was on Spiro up until a few weeks ago. I had an adverse reaction (heart issue) so I stopped it altogether for safety. It might have something to do with that to be honest. I'm certainly not restarting it!

[Charlotte Kitty ✅]

My GP completely refused to monitor bloods or have anything to do with my gender journey unfortunately. Most they did was my referral. They are very risk averse unfortunately. A lot won't even do shared care if its not from an NHS gender clinic and they can still refuse if it is from an NHS one I believe.  Crazy really. I tried Spiro a while ago and it really messed me up so came straight off it.

[Devlyn ✅]

I started HRT in the US, transferred my prescription to the NHS for four years, transferred my prescription to Spain for two years, and tried to transfer it back to the UK last week...BZZZZZZZ! Do not pass Go, do not collect $200!

I had to have a phone consultation with the new surgery (clinic for my US friends). That happened this morning with a doctor who had seemingly no comprehension of the fact that I was transgender, no longer produced my own hormones, and would need estradiol for the rest of my life. Took almost an hour, I had to say everything at least twice.

[Stottie Girl]

Dear Sarah: 
AFAIK, Spiro is protocol for many heart conditions, usually a daily low dose.
Danielle

Pretty sure I had a potassium spike from the Spiro Danielle. It caused horrible heart arrhythmia in the form of skipped beats, very scary, lasted for days. Stopped the Spiro and they vanished, waited two weeks then took one spiro and wham skipped beats again. stopped immediately and am not restarting. Same happend with cyproterone a year or so ago. Becasue of this I'm hoping the private endo will prescribe GnRH injections instead, they should do. I do intend to get an orchie as soon as possible though.

[Stottie Girl]

My GP completely refused to monitor bloods or have anything to do with my gender journey unfortunately. Most they did was my referral. They are very risk averse unfortunately. A lot won't even do shared care if its not from an NHS gender clinic and they can still refuse if it is from an NHS one I believe.  Crazy really. I tried Spiro a while ago and it really messed me up so came straight off it.

I guess we will see Charlotte. Maybe you should try another GP though. a lot of them are happy to but most will only entertain agreements with UK based respected professionals.

[Devlyn ✅]

Pretty sure I had a potassium spike from the Spiro Danielle. It caused horrible heart arrhythmia in the form of skipped beats, very scary, lasted for days. Stopped the Spiro and they vanished, waited two weeks then took one spiro and wham skipped beats again. stopped immediately and am not restarting. Same happend with cyproterone a year or so ago. Becasue of this I'm hoping the private endo will prescribe GnRH injections instead, they should do. I do intend to get an orchie as soon as possible though.

Spiro requires a tremendous amount of water intake. I was drinking a gallon a day (eight pints for my metric-system-loving British friends 🤣 ). I've always had great to almost low blood pressure. On Spiro I stood up too fast and ended up on the ground several times.

[Charlotte Kitty ✅]

I guess we will see Charlotte. Maybe you should try another GP though. a lot of them are happy to but most will only entertain agreements with UK based respected professionals.

I'm reluctant to change my GP though as for everything else they literally give me appointments the same or next day where all my colleagues have to ring in, wait and loads of hassle.  I just fill in a form online then I'm in.

I find the private gender services expensive too. Is this you've found cheaper? HRT  is costing me about £30 a month tops, probably less.

[Lori Dee ✅]

Becasue of this I'm hoping the private endo will prescribe GnRH injections instead, they should do.

Leuprolide for the win! Brand name Casodex. I got injections every 90 days. It is similar to a pellet: a small piece of plastic (polymer) that sits under the skin like other medicinal implants and slowly dissolves. It was expensive ($400 per dose), but the VA paid for it.

I was on that for over a year. That allowed my estradiol levels to rise without competition, and now the estradiol controls the T levels. Technically, I am estrogen-dominant, but if my endo doesn't care, why should I?

[tammy753]

I have been watching my Potassium intake for a long time. Its in everything. I was going to go vegetarian and use Textured Vegetable Protein as my new primary protein source. I found out that has a massive amount of Potassium in it. So you have to check everything. I hate Spiro but the alternatives are too expensive.

[Stottie Girl]

I'm reluctant to change my GP though as for everything else they literally give me appointments the same or next day where all my colleagues have to ring in, wait and loads of hassle.  I just fill in a form online then I'm in.

I find the private gender services expensive too. Is this you've found cheaper? HRT  is costing me about £30 a month tops, probably less.

I'm not sure on all costs yet. but I think the initial assesment is around £250 When I find out more i'll let you know.

[Stottie Girl]

Spiro requires a tremendous amount of water intake. I was drinking a gallon a day (eight pints for my metric-system-loving British friends 🤣 ). I've always had great to almost low blood pressure. On Spiro I stood up too fast and ended up on the ground several times.

I normally have low BP too and often suffered with hydrostatic hypotension before I went on spiro. That has dropped me to the floor several times. my BP is a bit higher now that I'm carrying more weight  but I still get dizzy when I stand up suddenly.

AS I've stopped spiro suddenly apparently the legs might be due to a diruetic rebound. I am also on ammitriptyline for sciatica which also can cause edema. i have stopped that now too. No quick fix it seems. I can take weeks to normalise. we will see what the doc says if I ever get to see them!

[Charlotte Kitty ✅]

Do you wear compression socks? They useful for edema. Not so great in this heat but can get some cute designs on them these days! I got some with cute foxes

[Stottie Girl]

Do you wear compression socks? They useful for edema. Not so great in this heat but can get some cute designs on them these days! I got some with cute foxes

I don't no. I've never ever had it before so I've never had the need.