The dangers of HRT - sometimes we don't realise

[Misato]

I don't like to talk about it, but something like that is what happened to a girl I knew in younger days, not sure if it was a blood clot but I'd heard that the birth control pills were to blame - I've often wondered about all that

Some friends and I went to pick her up to go to a concert, she took a few steps out the door looking happy then collapsed on the walkway

There were no such thing as cell phones at the time so we had to bang on the door and inform her parents to call 911 but it was too late, she was gone 

Wow, I know it's been a while but my condolences all the same.

Blood clot risk was one of the major things that kept me from transitioning for very long time. I was terrified. Today, I remain aware.

[Elizabeth1]

This story is so sad! Then again I believe that persons before starting hrt, if going through formal channels , does sign a disclaimer regarding adverse side effects. I'm nearly there-get my blood tests in anticipation of finally starting hormones next Friday! I am very excited but this has dampened my euphoria some what. I suppose we are all at risk to a certain extent- Cis and transgendered girls. For many of us we have no choice. You have to embrace life and being willing to accept there are risks involved. Life in generally has its challenges with plenty of ups and downs . As far as hrt goes it just emphasises the importance of engaging with medical services and ensuring you are being monitored. Wishing those 3 girls all the best .

[kira21 ♡♡♡]

Do we know what type of HRT they were on? Which estrogen and if they were on MPA?

I insisted on patches and micronised progesterone, rather than tablets and MPA when I spoke to my endo, because they are safer.

I read somewhere that aspirin does not affect the susceptibility to clotting for HRT. I will have to see if I can find it again and post it.

[luna nyan]

Luna, one was on implants and the other two on oral.

I did not mention causality, the cautionary part is being monitored so that you report any unusual symptoms to medics who are aware of your history and can put you on appropriate care.

That said HRT is well known to have a side effect of thrombosis in both natal males on HRT and natal females on contraceptives, particularly before the low dose pill was introduced for contraception.

More research required topic isn't it?

Definitely a higher rate of thrombosis compared to untreated norm iirc, something like a rate increase from 1.2% to 1.6% per year on age 60+.

Regardless though, I still have reservations on avoiding HRT for post menopausal women.  I still don't know which is the greater evil - the HRT side effects vs the ravages of osteoporosis.  Biphosophonates are a horrible drug in my opinion - but in many cases, better than nothing.

Kira, I can't remember offhand how HRT affects clotting - will have to dredge that up.

But Cindy's point is the important one - keep on being monitored to stay safe.

[peky]

I thought I would post this as a cautionary tale.

We have had three women present recently with prolonged headaches of greater than a week. Fortunately they were sent immediately for an MRI scan.

In each case they had a cerebral blood clotting issues (to varying extents). They all had to be hospitalised and treated with anticoagulants. They will never be able to take E again in all probability.

One of them is a personal friend and she is devastated. She had been on E for a number of years.

Yes it is very unusual to have such a sudden influx of women with this problem but it does emphasize that we are being treated with powerful drugs that can have profound effects both positive and negative.

So for those who self medicate - for whatever reason, please go and see a doctor to monitor you. For those under medical care, do be aware of the possible side affects and seek treatment quickly if you suffer out of the ordinary pain in your limbs, chest or head.

It may be nothing, it could be something.

I don't want to lose any of you!

Cindy

VTE (venous thromboembolism) has been correlated only with the use of ethinyl estradiol.  Most clinicians  do not prescribe ethinyl estradiol any longer (J Clin Endocrinol Metab. 2003). VTE during cross-sex hormone therapy is rare (Fertil Steril. 2010 Mar 1;93(4):1267-72).

A subject dear to my heart...so to speak, perhaps we could use this topic for our "dissections"  project.

Hope JTL sees this post...

[Rachel]

Thanks for sharing Cindy. I hope the woman recover well.

[Jenna Marie]

Those poor women. I'm glad they survived, but not being able to take HRT anymore has to be devastating.

This is the reason I tell people often about my story, because even on a very very low dose of estrogen only (no actual amounts, but it's within the range prescribed without monitoring to cis women), I ended up with liver damage sufficient that I had to take months off of estrogen and be retested repeatedly including an ultrasound. My endo and GP are both quite sure it was the E that did it, and I'm lucky as heck that I had a routine liver function test done after three months in the beginning.

(Best guess, as I recall the explanation, is that it was a transient liver infection, which can be asymptomatic. I had no noticeable issues going into HRT, but add one more thing to the load on the liver and it was clearly too much. I STILL had no symptoms when the first [and 2nd opinion] test came back with scary results, and the endo says without testing, my first clue might've been liver failure.)