Susan's Place Transgender Resources

Hi all,

Just wanted ask people if they have had any issues during transition with Deep Vein Thrombosis.

I have my appointment with my GP tomorrow for him to first prescribe HRT and Decapeptyl (It's what the Charing Cross Gender Clinic use to suppress Testosterone levels nowadays). One of the things that does seem to be mentioned alongside 'Risks of MTF HRT' is the increased risk of problems such as Deep Vein Thrombosis and Pulmonary Embolism, which for a Health Anxiety sufferer like me is a real concern. Having spoken to my Mum about this she informed me that my Nan had DVT 'a few times' in her life, which is not something that I was aware of.

What counts as a 'Strong Family History' of DVT/Thromboembolic Disease and what troubles has anyone here had with it?

Of course I will discuss this all with the GP tomorrow, as not only could he just prescribe patches/gel etc if there is a majorly increased risk, but also one grandparent having it may not be classed as a 'Strong Family History'.

Waiting to hear from you all,

Naomi x

I had DVT, severe in my right leg. What would you like to know?

I guess the 2 things that I would like to know the most are 1. What are the likelihoods of DVT developing into something life-threatening? and 2. Would having one grandparent with remittant DVT count as a 'Strong Family History'?

On a more personal note, how was your experience of it? Were they ever worried that it may become something more serious (PE or stroke)? Has it affected your hormone treatment?

N x

Yes, that counts as family history. Your doctor can decide how strong it is. Problem is that in the past people would often just die with no specific diagnosis.

DVT is life threatening. Period. Always. So if you get one you could easily die from it. Its random, depending on how it develops. The way you could die depends on where the Thrombosis develops.

So in my case it was the leg. Dont forget, one of the common side effects from estrogen is to change your cholesterol levels. High cholesterol = potential for narrowed arteries = increased probability for thrombosis. Thats why regular blood work is so important. Double ditto for very very good diet. Yes, I was advised to get my affairs in order so they were concerned.

Anyway, if in the leg, if part if the clot comes loose it will go to your lungs and cause a PE. If in your heart a heart attack (coronary). If other places, a stroke.

My personal experience. Intensely painful, leg swoll up to twice the size and could barely walk. I had heparin injections for a week or so and went on warfarin sodium which I will need to take forever. Im still here, my leg hurts every day and if Im not careful gets swollen. You need to have blood work, should be once a month but cant be bothered to check for INR (international normalized ratio) which is blood level. They then constantly adjust the daily dose up and down. You bleed very easily and when you bleed it bleeds forever. Even a tiny little paper cut. Pain in the ass.

There is a new med you can take that doesnt require the blood work but its expensive.

What else would you like to know?

Thanks for all that info, it'll give me plenty to talk to the doctor about. As far as I'm aware my Nan was always a smoker when she had DVT, though I will try and get a bit more info from my Mum for my appointment tomorrow.

One good thing about living in the UK and having the NHS is that I don't have to worry if any one of these drugs to combat clotting is expensive because the NHS will pay for it. I wouldn't like to think of wasting NHS money but stuff like this is really important so that's okay as far as I am concerned :-)

The cost of the med is irrelevant really and NHS only covers some drugs, not all drugs. You should know that.

Smoking increases your risk. Just like birth control for females.

If this freaks you out, sorry, but no point in being less than honest.

If you are plus 40 you should NOT get your estrogen through pills. You should use patches.

I'm 27, have smoked about 10 cigarettes in my entire life (been drunk and been handed an already lit one - probably not anything at
all for about 2 years). I hardly ever drink alcohol (the above comment in brackets largely just applies to my teens) and walk at least 1 - 2 miles daily (I do a 10 mile walk once every couple of weeks).

However, I work in an office (do try and walk around every hour or 2), don't have the healthiest of diets and have a Nan who has had DVT.

So there are bits in my favour and bits against.

I'm definitely going to discuss with GP and see what he advises. I'll imagine at a minimum he will want to order more blood tests.

Its random. Your doctor can direct you where to read about the potential side effects and risks with estrogen. There is a pretty good link on this web site. Very little information available on how estrogen effects male bodies specifically. Mostly based on studies with females. Our risk could be higher or lower. Your age is good. Before starting HRT Im sure they will do a complete blood work for you. Once you start, I had mine done once a month for the first year or so. Now I do it every 3 months. But blood work can be perfect and you get DVT anyway.

I've had the standard Charing Cross blood tests done and everything came out exactly normal. Whether there is a test for clotting tendency in this bank of tests, I don't know.

I'm sure this will all be fine, I'm just quite cautious and will do everything I can to cover all bases. Its in my nature.

Thanks so much for all your advice Amber, I'm really grateful :-)

Your very welcome. Its refreshing to have someone sensible, who informs themselves. Too many just take whatever the doctor gives them. It is wise to be cautious and hormones are very powerful meds. When it comes down to it, you are your own doctor. The time you have to spend on your own body is unlimited. Any doctor just talks to you for a few minutes now and then and has thousands of patients to deal with.

I live in Canada, previous UK. Health care systems very similar.

@amber

how did you DVT effect your hormones? Did you have to discontinue them? I was under the impression that you could be on anti clotting meds and transdermal estrogen and be able to continue if you wish?

This is one of my biggest fears having something like this happen and ruin my transition and have my hormones taken away from me forever.

@naomi

I have Generalized Anxiety Disorder and Social Anxiety and also health anxiety issues so I understand how you feel I felt the same a couple of months ago.

http://jeffreydachmd.com/2013/04/transdermal-vs-oral-estrogen-p2/

This is just one of many articles.

It's very obvious that transdermal delivery of estrogen is safest. You should just opt for it anyways.

I use elestrin gel but was considering patches as well.

The pill implants seem to be the supreme option though.

Be calm hunny.

I never stopped with my estrogen. I could have but I did not.

By the time I went to the emergency room at the hospital my leg was severely swollen and I could barely walk on it. Didnt want to go because at that time my identification was not correct but I was already female and full time. So I waited and waited until I couldnt take the pain. Should have gone a week earlier but thats just me.

So now I am on warfarin forever, for the rest of my life. It helps to prevent any further clots and it prevents any clots from breaking off which is the real concern.

Its a royal pain in my ass though. Dont recommed it. But better than being dead. There is a new med you can take where you dont have to measure INR with blood work but its expensive and I dont bother with those things any more. Too many needles, no more blood work for me.

Patches are safer and easier on your body in the long run and anyone over 40 should use them. But they cost twice as much as pills so not everyone can afford them. Not always practical.

Im sorry that happened to you that really sucks but I am happy that you survived!

What is the name of that medication do you know?

I am so happy to know that worst case if it does happen to me then I can continue my hormones.

Aren't the Gel and Patch the same transdermal delivery system so wouldn't they be just as safe? Or are there some other added benefits from patches that I am not aware of?

Im leaving this place soon but wanted to answer your question. The other drug is called Pradaxa. The main advantage is no regular blood work is required. But its 4 -5 times as expensive. Warfarin is dirt cheap, maybe $15 cdn per month but regular blood work is required to monitor blood levels which they call INR ) International Normalized Ratio). The correct range is 2-3. There are also dietary restrictions - basically any leafy green vegetable like kale or swiss chard or collard greens or brocolli. Basically anything high in Vitamin K which is what warfarin is.

I have used the gel and patches, The gel is messy it gets on your clothes. So I prefer the patches. If you use them, make sure you get the ESTRADOT type - the patches are small - maybe 1.5 cm square. There are other types but 1o times as big. Irritating. Sometimes the patches make your skin itch but no big deal.

I should add that in my case I would not consider the warfarin a cure. My leg remains sensitive after 2.5 years. It gets sore and swells easily, it can be painful from time to time. So its a mild disability and I guess for me it will be forever. Others report complete resolution in a few months. But I am in my fifties, things just dont heal as well the older you get.

Dont let this upset you. Just if your leg starts to get sore, go to the hospital right away. Dont wait like I did. According to the specilaist I consult with, I can be on warfarin the rest of my life without problem. Its a pain, but I can live with it. I was never advised to stop HRT, I hope this makes you feel better.

Just highlights HRT is not a game. Transition is serious business and once in a long while it can make you sick.