My peripheral edema after GRS

[Miss Clara]

I'm looking for any insights people here may have regarding the onset of peripheral edema in the lower legs as a consequence of hormone therapy associated with MTF transitioning.

Since having GRS (gender reassignment surgery) nearly 2 years ago, I've experienced chronic peripheral edema in my calves, ankles, and feet.

The doctors I've consulted on the matter weren't much help.  None has seen fit to determine its root cause.  One prescribed a diuretic (Lasix), and another advised me to start wearing compression socks.

On my own initiative I had a vein ultrasound done which showed no signs of CVI (chronic venous insufficiency - leaky valves).

I consulted with a lymphedema expert who declared that I suffer lymphedema and advised lymphatic decongestive therapy and, again, compression socks.

On my own initiative I scheduled a nuclear lymphoscintigraphy test to determine the health of my lymphatic system.  The results showed a normal functioning lymphatic drainage system.  I have no heart, liver, or kidney problems.  I have normal blood pressure, and am not diabetic.

I recent did a review of my transition journal (in which I made daily entries documenting my transition going back to 2013).  I related events on my transition timeline to photographs of myself which showed the condition of my legs and feet.  These records show that when I started prescription HRT (estradiol valerate and a small dose of spironolactone) there was no significant edema in my legs and feet.  But, two weeks later photos show that my feet had swelled up noticeably.  I increased my dose of spiro, and within two weeks, my legs and feet looked fine again.

I continued on estradiol and spiro for a year and a half until I stopped in preparation for GRS.  I have photos showing no signs of peripheral edema right up to the morning before surgery. 

I restarted on estradiol about a month after GRS, but not spiro.  Photos show swelling in my ankles and feet happening just a few weeks later to the point that my shoes didn't fit.   I began to elevate my feet to get the swelling to subside.  That helped, but was short lived, so I purchased some compression socks. 

I recently did an experiment by taking some leftover spironolactone, and in just 3 days my weight dropped 8 lbs, and the edema in my legs and feet all but disappeared without the need for compression wraps or socks.  Obviously, spiro, a diuretic, was purging a lot of water from my body.  When I reduced the dosage of spiro, I quickly regained 6 lbs.

It seems that HRT (estradiol) has disrupted fluid regulation in my body causing excessive water retention.  This excess fluid settles in my lower legs and feet under the influence of gravity, and it's too much for my circulatory/lymphatic system to handle.  I'm guessing that this effect of estradiol was probably true when I first started HRT, but the diuretic effect of spiro compensated for it so it wasn't noticeable.  When spiro was halted after GRS, water retention resulted unchecked. 

I'm not about to stop taking estradiol without consulting with an endocrinologist experienced in trans health to discuss this problem, but in the mean time, I want to ask if anyone here has experienced a similar reaction to estradiol, and, if so, how did you resolve the problem. 

[Karen_A]

About 10 years ago that happened BIG TIME for me (and I was 9 years post-op) ... I was on high dose injectable estradiol and within week or so I put on about 50lb... pitting edema on my legs and my feet swelled up so big I could not wear my shoes, and bloated all over!

The weird thing was that nothing about my HRT had changed in years, and my GP could not figure it out... He thought I might have cancer and has me do a PET scan! Scared the heck out of me!

I stopped the estradiol and he prescribed a diuretic and things went back to normal quickly... Went back on the IM estradiol but at a lower dose and it never happened again.

- karen

[Dena]

I did an internet search because I remember that women sometimes have problems with fluid retention at points in their period. Sure enough, one of the side effects of Estradiol is "fluid retention (swelling, rapid weight gain)". It appears that you lost the genetic lottery and inherited this from your parents. I would guess that the solution would be a mild diuretic like Spiro in a lower dose or cut your estradiol levels to near menopause levels.

[Miss Clara]

Dena, that thought occurred to me, too.   I've reduced my E dosage by a third and am resuming a low dose of spiro to see if there is any effect.  I'm also trying to set up an appointment with a trans-friendly endocrinologist here in Chicago who I met a couple of years ago.  I know he's experienced in these matters, and should be able to advise me on the best course of action.   

Thanks for your comments, Karen.

[Miss Clara]

The specialist I was seeing said that 10-15% of women on estradiol experience water retention.  Since reducing my E dosage and taking a small dose of spiro (a diuretic), my peripheral edema has been greatly reduced.  The question I plan to ask the endocrinologist is whether it would be worthwhile supplementing estradiol with progesterone (which has a diuretic effect) instead of spiro.  Furosemide (Lasix) is a loop diuretic that is often prescribed, but I recall experiencing painful leg cramps at night as a side effect.   

[Miss Clara]

This a follow-up on my peripheral edema problems.  I'm still on a low dosage of estradiol, but stopped taking diuretic meds months ago.  They tended to cause overnight leg cramps that were quite painful.  My peripheral edema is not symmetrical.  My left ankle swells more than my right.  That's an indication that the cause is not systemic in nature (kidneys, liver, or heart issue).  I noticed recently a flareup of my edema that I recall it happened about the same time last year (April).  I live in Arizona desert country, and about this time of year the weather turns very hot (90 - 100F).  Dehydration is a constant issue as the body tries to keep cool through perspiration.  Because of the dry air, there are no signs of excessive perspiration, so it's easy to not notice how dehydrated you become. 

Well, one of the body's responses to dehydration is to retain body fluid in the tissues and reduce the amount of water expelled via the kidneys.  That excess fluid tends to accumulate in the lower extremities under the pull of gravity.  The answer is to drink more water.  Lots of water.  Over several weeks, the body will stop retaining excess fluid which reduces, even eliminates edema in the feet, ankles, and calves. 

So that's what I've been doing.  It sounds counter intuitive, but it works!  The swelling is way down.  The only downside is having to pee a lot more.  I'm hoping that in time I will be able to reduce my water intake without re-inducing the edema.

Oh, and it's important to restore electrolytes that get washed out.  Nutrient drinks like Powerade work well.

[Doreen]

This a follow-up on my peripheral edema problems.  I'm still on a low dosage of estradiol, but stopped taking diuretic meds months ago.  They tended to cause overnight leg cramps that were quite painful.  My peripheral edema is not symmetrical.  My left ankle swells more than my right.  That's an indication that the cause is not systemic in nature (kidneys, liver, or heart issue).  I noticed recently a flareup of my edema that I recall it happened about the same time last year (April).  I live in Arizona desert country, and about this time of year the weather turns very hot (90 - 100F).  Dehydration is a constant issue as the body tries to keep cool through perspiration.  Because of the dry air, there are no signs of excessive perspiration, so it's easy to not notice how dehydrated you become. 

Well, one of the body's responses to dehydration is to retain body fluid in the tissues and reduce the amount of water expelled via the kidneys.  That excess fluid tends to accumulate in the lower extremities under the pull of gravity.  The answer is to drink more water.  Lots of water.  Over several weeks, the body will stop retaining excess fluid which reduces, even eliminates edema in the feet, ankles, and calves. 

So that's what I've been doing.  It sounds counter intuitive, but it works!  The swelling is way down.  The only downside is having to pee a lot more.  I'm hoping that in time I will be able to reduce my water intake without re-inducing the edema.

Oh, and it's important to restore electrolytes that get washed out.  Nutrient drinks like Powerade work well.

First I'd ask how your overall heart condition is?  What's your resting blood pressure & pulse?  Are you diabetic?  There are many factors that increase your chances at edema.  If you were on spironolactone (aldactone) before, it is a diuretic as most folks know so a problem you may have had before may have been helped by the spiro, and thus masked the symptoms from occurring.   Also there is the possibility your body compensated for the fluid loss from spiro that with its withdrawal, you start retaining water too.  I personally wiggle my legs all the time.. I really think this helps a lot too as you're always circulating with them wiggling! 

Old nursing strategies of elevating your feet, neither standing or sitting for long periods of time.. Avoid crossing your legs.  If you do have a job of sitting down make sure you get up every hour and walk a bit.  This can increase your circulation.  You're absolutely right about drinking more water too, as long as your overall electrolyte balance is within normal limits.  Keep an eye on both sodium & potassium levels (I suspect it was the potassium causing your cramping issues).

I hope this helps, its nursing strategies I've talked to many folks about over the years.  If its all information you've already heard, feel free to ignore   Its just my attempts at being helpful.

[Miss Clara]

Thanks, Doreen.  Yes, I've been checked out as far as the health of my heart and blood pressure.  Both are fine.  I've had my leg veins examined and my lymphatic system, as well.  Everything checks out normal.  Spiro did mask the edema, and although it is potassium sparing, I had some very painful nightly leg cramps. That's mostly in the past now.   I wear compression socks on occasion, elevate my legs, and even use air compression sleeves to massage my legs.  It all helps to manage a rather frustrating condition.

[Gail20]

Another place to look is your Thyroid. It is involved in so many health aspects.  I injected too much Estradoil over a couple of years and it evidently signaled to my Thyroid to decrease production . . . .permanently  :-(  Watch the Estradoil.  Excess is not just harmlessly sloughed off - everything is related. . . .

[Miss Clara]

Another place to look is your Thyroid. It is involved in so many health aspects.  I injected too much Estradoil over a couple of years and it evidently signaled to my Thyroid to decrease production . . . .permanently  :-(  Watch the Estradoil.  Excess is not just harmlessly sloughed off - everything is related. . . .

That's why it is so important to schedule regular (I do bi-annual) checkups with your doctor including the appropriate blood tests that reveal the development of these conditions as early as possible.

[HughE]

Fluid retention in your legs is a sign of estrogen excess. If that's what the problem is in your case, then taking supplemental progesterone is a way of treating it. I use progesterone cream as part of my HRT, and fluid retention in my legs is one of the things I experience if I don't take it. Progesterone sits in a fairly central place in the hormone biosynthesis tree, and supplementing with it has the effect of providing more raw material for the production of all your other hormones, making you less top heavy in estrogen.

Progesterone is the second female hormone, and it's a key hormone in both men and women for the biosynthesis of other hormones. Doctors should really prescribe both hormones for MTF HRT rather than just estradiol on its own. They often don't, because progesterone has gained an undeserved reputation for being worthless or harmful for trans women. In fact, the worthless or harmful hormones are a class of synthetic hormones called progestins, which doctors often give their patients instead of progesterone. The pharmaceutical industry market progestins as being the same as progesterone, but they're not. Most progestins cross react with androgen receptors, which is a very bad thing in MTF HRT because it results in effects similar to testosterone (facial hair growth etc), Progesterone doesn't have this side effect. Perhaps more important is the fact that real progesterone acts as a raw material from which numerous other hormones are made. Progestins don't act as a raw material for anything. Instead, they often gum up the body's hormone processing enzymes (although this particular property isn't well documented, so it's quite difficult to find out which enzymes a particular progestin interferes with). This probably explains why progestins have adverse side effects (such as causing depression), which aren't seen with progesterone itself.