Susan's Place Transgender Resources

I have polycythemia vera. It's a bone marrow disorder that makes it produce too many red blood cells. It also greatly increases the chances of blood clots. When I search for information online all I can find is that its a relative contraindication. However I can't find any academical information specific to my condition. So far I understood that its gonna be hard for me to get HRT. Does anybody else have my condition? What happened when you wanted to start HRT? Were you able to start it? Did you have any complications?

My red blood count went down on estrogen. I'd have thought that's more a problem for ftm Regardless, I'd consult a good endo with trans experience. There's one in Sydney if you happen to be there.

Do you have PV? I think my RBC will go down on estrogen too. I actually found an endo with trans experience, I am going to get an appointment tomorrow. I can't get prescribed HRT yet, because I need 6 months of psychological evaluation, I am already in therapy for 3 months but this psychological evaluation thing is a little bit different than being in therapy.

I don't have pv.

I present male and my blood tests report come with results test are outside normal male reference ranges flagged. My red blood count was very low by male standards, and my endo explained it was in the female range and normal.

Out of curiosity I once discussed blood clotting problems with him. He has 3500 trans patients so as you might expect he does have trans patients with problems. No idea if any are due to pv though.

Is the endo requiring you to do this 6 month evaluation? There's no legal requirement in most places for it, and it's up to he doctor what they want. Personally I don't agree with it and didn't do it. Others I know locally have it in a single 1 hour session.

In my country you have to "prove yourself" for HRT. You get evaluated for 6 months by a team comprising of a psychiatrist, a lawyer (why?), an urologist, a plastic surgeon, a geneticist and of course an endocrinologist.

Welcome to Susan's Place, and OMG!  :o I can't believe you're here!

Quote from: Devlyn Marie on July 30, 2017, 05:13:41 PM
OMG, my nerd dream scenario starts this way! Everyone knows I work on military electronics, right? If they hired another transgender girl, we'd be........transistors!  :laugh: ;D 8) ::) >:-)

Hugs, Devlyn

See you around the site!

Hugs, Devlyn

I honestly didn't notice the thing about my name :) Its also my ->-bleeped-<- name. I just took it to keep... continuity?

Welcome to Susan's Place. The doctors will make the final call but my understanding is that your red blood cell count can drop on estrogen. When I resumed it, I saw a short term drop but my levels are back to where they were when I started. Because my estrogen dosage is relatively low, it might explain why I didn't see much of a change and why the change was temporary. On the other side, when some of the FTMs go on testosterone, they see an elevation in their RBC. In some cases the doctor give them the option of a reduced dosage or regular blood donations to keep their RBC under control.

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The problem is more about the risk of clotting. As others said the lack of testosterone can actually be beneficial in my case. However, estrogen has some not-well-understood effects on clotting. In PV, even if your RBC is stabilized to normal levels you still have a higher clotting risk. Since having both polcythemia and gender dysphoria is extremely rare, I couldn't find any studies about my specific condition.

I assume they use bioidentical estrogen rather than Premarin or Ethinylestradiol.

If you are talking about the endos in my country, well it depends. I've heard people getting prescribed birth control pills containing ethinylestradiol, which shows how horribly inexperienced most of the endos in my country are.

There are older studies and some current information scattered around this site though it could be buried pretty deep. The general opinion is that if you have a risk of clotting, you should stay away form pills for estrogen. Implants, injections, patches and gels are the preferred way of receiving estrogen if you have a clotting risk. I don't know for sure but I suspect it's due to the fact that estradiol converts to estrone at a high rate with pills. With a non oral route the conversion is far lower. The hitch is total estrogen on pills could exceed 700 pg/ml where as on other treatments, it would be less than 300 pg/ml. Now the important hormone is estradiol and the levels for an equivalent dosage are lower on pills that other methods of treatment.

Pills have the advantage of being cheap and easy to take. Other methods produce higher estradiol levels and far lower estrone levels. I believe if your treatment uses something other than pills, you should be able to receive estrogen. 

I think the reason that the patches are safer is because of the liver. When you take an estrogen pill it goes to the liver after your stomach. The liver secretes inflammatory and clotting agents into your bloodstream, which increases the risk of clotting. This is called first pass effect. I am still waiting for HRT. My therapist diagnosed me with gender dysphoria, but I need the approval of a psychiatrist to start being evaluated by the gender identity council. After 6 months of evaluation I will be able to start HRT.

I understand the first pass issue and I am working on an alternative explanation that's not ready for prime time. I discount the first pass theory some because if the liver doesn't see it on the first pass, it will on the second, third, forth and so on. Eventually all of the estrogen will visit the liver and at the rate blood flows, the time period will be fairly short. In any case whatever the reason, it sounds like pills are best avoided in cases like yours.

Yes, I understand. You are right, the liver will eventually see all the estrogen. Maybe the point of transdermal estrogen is that the liver doesn't see all the estrogen at once? This is just a guess of course. Anyway.

I am sorry that I posted to the wrong place by the way. I looked if there is a place for posting things about HRT but somehow didn't see it.

Quote from: boredtransistor on December 24, 2017, 04:53:59 AM
I have polycythemia vera. It's a bone marrow disorder that makes it produce too many red blood cells. It also greatly increases the chances of blood clots. When I search for information online all I can find is that its a relative contraindication. However I can't find any academical information specific to my condition. So far I understood that its gonna be hard for me to get HRT. Does anybody else have my condition? What happened when you wanted to start HRT? Were you able to start it? Did you have any complications?

I hope you are able to find someone else who has dealt with PV and HRT simultaneously, but the most you could hope for would be anecdote, not evidence.  There probably isn't a lot of evidence directly pertinent to you.

I am often beating the drum that we don't all need to see specialists for hormone therapy.  In your case, I think seeing both Hematology and Endocrinology would be wise.  Just remind them that the decision to transition or not is yours, not theirs, and that you are looking for the safest possible way to do so.

Posting in the wrong place on the site is pretty common for new members. It's not uncommon to do 6  or more moves in a day to put stuff where it will be seen. Moves are relatively easy to do and it takes longer to document the action that to do the move.

As for the slow, constant delivery, that is part of the idea I am working on. Pills no matter how they are taken currently spike the estrogen levels so there might be a way around that. I need to talk with somebody who has more knowledge about it to check my thinking.

Quote from: rmaddy on December 24, 2017, 12:12:36 PM
I hope you are able to find someone else who has dealt with PV and HRT simultaneously, but the most you could hope for would be anecdote, not evidence.  There probably isn't a lot of evidence directly pertinent to you.

I am often beating the drum that we don't all need to see specialists for hormone therapy.  In your case, I think seeing both Hematology and Endocrinology would be wise.  Just remind them that the decision to transition or not is yours, not theirs, and that you are looking for the safest possible way to do so.

Thanks. You are right. The decision to transition is mine to make. But, sadly, it doesn't work that way where I live. There are limited options for me to do it. This is why I thought that if I could show them some academic research about my specific condition it may help. But as you said, all I can hope is anecdote. I could find only one person who were able to get HRT with PV, but she said that her diagnosis was not certain.

Quote from: Dena on December 24, 2017, 12:27:47 PM
Posting in the wrong place on the site is pretty common for new members. It's not uncommon to do 6  or more moves in a day to put stuff where it will be seen. Moves are relatively easy to do and it takes longer to document the action that to do the move.

As for the slow, constant delivery, that is part of the idea I am working on. Pills no matter how they are taken currently spike the estrogen levels so there might be a way around that. I need to talk with somebody who has more knowledge about it to check my thinking.

Maybe extended release tablets? I know several drugs can be taken this way, like Xanax XR.

Quote from: boredtransistor on December 24, 2017, 12:34:52 PM
Maybe extended release tablets? I know several drugs can be taken this way, like Xanax XR.

That is the solution I came up with but I am working on the why it will work. Estradiol valerate is supposed to get around this problem by allowing the cleaving to take place in the blood stream however I have seen some conflicting information that indicated the results were no different than standard estradiol. One of these days I will get it figured out but not today.

Just to clarify two points:

1)

Prostate 1989;14(4):389-95

"The impact of exogenous estrogens on the liver is dependent on the route of administration and the type and dose of estrogen. Oral administration of synthetic estrogens has profound effects on liver-derived plasma proteins, coagulation factors, lipoproteins, and triglycerides, whereas parenteral administration of native estradiol has very little influence on these aspects of liver function."

"Indeed, when native estrogens are given parenterally, the effects on liver-derived plasma proteins, coagulation factors, lipoproteins, and triglycerides are very weak or completely abolished [17,18,20,28-30,431. Recent studies have demonstrated that the same principle is valid also during estrogen treatment for prostatic cancer. The native hormone estradiol-17B, when given as intramuscular injections of polyestradiol phosphate, can clearly provide a suppression of testosterone equal to that following orchidectomy [28,44,45]. In spite of this, there is only a minimal influence on liver metabolism as expressed by plasma protein synthesis [24]."

Obstet Gynecol Clin North Am. 1987 Mar;14(1):269-98.

"The amount of estradiol leaving the liver following oral administration is substantially less than that which enters it through the portal vein. The systemic administration of estradiol avoids this initial hepatic metabolism. Furthermore, only 25 per cent of nonorally administered estrogen will go to the liver at each pass, and nonhepatic tissues would be exposed to a greater extent than after oral administration. Thus, peripheral administration of estradiol reduces the exaggerated hepatic responses in comparison to nonhepatic actions."

Minerva Endocrinol. 1989 Jan-Mar;14(1):41-4.

"Having no first pass effect on the liver, parenteral administrations have less influence than oral ones on the synthesis of certain proteins by the liver (increased SHBG, CBG, TBG, transferrin, ceruloplasmin, angiotensinogen, clotting factors VII, IX, X and X complex; decreased antithrombin III and anti Xa) and on lipid metabolism (increased biliary cholesterol, triglycerides and HDL, especially HDL2; reduced LDL)."

Climacteric. 2017 Aug;20(4):331-338.

"transdermal estradiol also does not confer any additional VTE risk in women at high risk such as from obesity, prothrombotic mutations and a personal VTE history. Therefore transdermal estradiol is not contraindicated in these patients who thus may benefit from MHT if required."

"This MHT could also be optimal for symptomatic patients with various health risk factors such as risk factors for venous thromboembolism and ischemic stroke, hypertension, diabetes mellitus, metabolic syndrome, obesity, smoking, and especially for (very) elderly people7."

To me, the estrone theory seems illogical and flawed because estrone would actually trigger less strongly the receptors in the portal vein (from the intestines to liver) to increase or decrease certain clotting factors and proteins to be produced and this is part of the reason why oral bio-identical estrogen has less an effect on coagulation than ethinyl estradiol or premarin, in addition to less overall passes through the liver because of more rapid metabolism/inactivation.

2)

Br J Obstet Gynaecol. 1978 May;85(5):367-72.

"Our study indicates that oral oestradiol valerianate is probably treated in a similar way to oestradiol and it may be that valerianic acid is split off already in the gastrointestinal mucosa."

Maturitas, 4 (1982) 315-324

"The high plasma levels of 17B-oestradiol found shortly after intravenous injection of oestradiol valerate are a clear indication of very rapid cleavage of the valeric acid, which can take place not only in the liver but also in the blood and tissues (own results, [19,20])."

"It has also been demonstrated in man that, following oral administration of (...) oestradiol [ 14C]valerate the fatty acid is split from the steroid during the absorption process and/or the first passage through the liver."

Acta Obstet Gynecol Scand Suppl. 1977;65:27-31.

"It is concluded that oestradiol valerianate is rapidly absorbed from the gastrointestinal tract and converted to E1. This is reflected by plasma levels of E1 considerably higher than those of E2.

CLIMACTERIC 2005;8(Suppl 1):3–63

"Esterification of the C17-hydroxy group of estradiol with valerianic acid results in estradiol valerate, which prevents metabolism to estrone as long as hydrolysis has not taken place. After hydrolysis in the intestinal tract, the resulting estradiol is rapidly absorbed. Therefore, after oral administration of estradiol valerate or micronized estradiol, the pharmacokinetics of estradiol is similar and the bioavailability is about 5%"

Quote from: boredtransistor on December 24, 2017, 04:53:59 AM
I have polycythemia vera. It's a bone marrow disorder that makes it produce too many red blood cells. It also greatly increases the chances of blood clots. When I search for information online all I can find is that its a relative contraindication. However I can't find any academical information specific to my condition. So far I understood that its gonna be hard for me to get HRT. Does anybody else have my condition? What happened when you wanted to start HRT? Were you able to start it? Did you have any complications?

Hi, Really sorry to pick up this thread almost a year late, but I'm transitioning and I've also been diagnosed with polycythaemia vera.  I was diagnosed about four months' ago, which has led to my endocrinologist taking me off estrogen because she is afraid of the risk of blood clotting or strokes.  I was on HRT for about 10 months up until January this year when I was told I had to come off the estrogen patches whilst the cause of my high red blood cell and platelet count was investigated.  I was eventually referred to a haematologist who diagnosed me with PV in August of this year.  My understanding is that they are prepared for me to go back on estrogen patches but only if the PV medication I am on is successful in getting my platelet count down to normal levels.  Since August, I have been on Interferon along with dispersible aspirin.  I'm a bit of a strange case at the moment, as since September, I have been allowed to have Zoladex injections as an anti-androgen resulting in me having zero point something testosterone left, meaning that I currently have virtually no hormones whatsoever.  I'm just hoping now that my blood cell/platelet count will go down enough for me to continue estrogen patches and therefore move forward again with my transition.

@Katie S

Quote from: Katie S on December 16, 2018, 03:04:50 PM
Hi, Really sorry to pick up this thread almost a year late, but I'm transitioning and I've also been diagnosed with polycythaemia vera.  I was diagnosed about four months' ago, which has led to my endocrinologist taking me off estrogen because she is afraid of the risk of blood clotting or strokes.  I was on HRT for about 10 months up until January this year when I was told I had to come off the estrogen patches whilst the cause of my high red blood cell and platelet count was investigated.  I was eventually referred to a haematologist who diagnosed me with PV in August of this year.  My understanding is that they are prepared for me to go back on estrogen patches but only if the PV medication I am on is successful in getting my platelet count down to normal levels.  Since August, I have been on Interferon along with dispersible aspirin.  I'm a bit of a strange case at the moment, as since September, I have been allowed to have Zoladex injections as an anti-androgen resulting in me having zero point something testosterone left, meaning that I currently have virtually no hormones whatsoever.  I'm just hoping now that my blood cell/platelet count will go down enough for me to continue estrogen patches and therefore move forward again with my transition.

Hi Katie 🙋‍♀️ Welcome to Susan's Place!  I'm Jessica.
It's fine to enter an older thread, especially if it pertains to issues you have.
I hope you are able to sort this out with your doctors, and continue your estrogen patches.

I see you're new here, so I'll post some links that may help you get better acquainted with the site. Pay attention to the site rules they can be of great help and don't forget the link highlighted red.  It has answers to questions that are commonly asked.  Then join in on a topic you find interesting and learn and share.

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Hi Jessica, Many thanks for your kind wishes, for the links provided in your reply and for welcoming me to the site.  I'm very sorry that my reply to you is so late.  Yes, I am hoping that this will be the year that I can get back on estrogen and resume my transition.  When I visited the haematologist last month with regard to my polycythaemia vera he said that the interferon I'm on is making my blood cell and platelet count go down so that's given me some hope, even if it's still nowhere near the healthy average level yet.  I have my next anti-androgen (zoladex) jab next Thursday and my endocrinologist said she'd contact me hopefully some time in February to see if it's safe for me to go back on estrogen.  Thank you so much for your warmth and kindness and I'd like to wish you a very happy new year and all the best for 2019. x

Quote from: Dena on December 24, 2017, 11:44:40 AM
I understand the first pass issue and I am working on an alternative explanation that's not ready for prime time. I discount the first pass theory some because if the liver doesn't see it on the first pass, it will on the second, third, forth and so on. Eventually all of the estrogen will visit the liver and at the rate blood flows, the time period will be fairly short. In any case whatever the reason, it sounds like pills are best avoided in cases like yours.

It's actually less to do with the liver and more to do with passing to the blood from the digestive tract - which every admin method other than swallowing the pills avoids.