Progesterone/Estrogen for Orthostatic Intolerance

[Wendy B.]

Did a quick search here and didn't find anything, and I've never heard of this in CFS circles, yet I find female hormones as treatment for OI in articles for non cfs OI. Progesterone is very much helping my OI (unfortunately it's adversely affecting my sleep). Anyone had experience with Progesterone, estrogen or both for their OI?

Wendy

 

[vamah]

Did a quick search here and didn't find anything, and I've never heard of this in CFS circles, yet I find female hormones as treatment for OI in articles for non cfs OI. Progesterone is very much helping my OI (unfortunately it's adversely affecting my sleep). Anyone had experience with Progesterone, estrogen or both for their OI?

Wendy

I hadn't thought about a connection, but I recently started taking progesterone and, when I think about it, OI is not as bad. Don't know if I can attribute this to progesterone or not. I started valcyte around the same time and am inclined to think that is a more likely explanation, but who knows.

 

[Shell]

Hi Wendy B. That's one of the questions I've wondered about. I don't think there's much research in female hormone balance at all (hence the appalling 'give 'er the Pill' response to all "wimins problems" by so many doctors). However we do know that hormone balance is very subtle and even slight changes can cause problems.

We also know there's been an increase in fertility problems in both men and women, but more so in women.
Since being ill I've had some problems. I had luteul phase defect which caused me to lose two babies. Thankfully I self-fixed it with high dose EPO and then some other stuff to kick up the estrogen and in turn that helped progesterone and I have my 6 year old daughter to show for it.
Had other things since then and lost one since H was born but I'm past trying for a Twinkle from God's Eye these days so I'm afraid I don't try and fix anything. There's so much else that's bust that I need to deal with at the moment.lol.

Had low BBT for a while which, with other symptoms, made me think my thyroid was up to no good. I took high doses of sea kelp for a few months and that got my BBT up above hypothermal levels. Don't chart these days so don't know what my temp is doing, but I tend towards "freezing".

I'd be interested in how many of us have these probs.

 

[Ema]

Progesterone is a steroid hormone and sometimes OI can be a result of low steroid production, specifically low aldosterone and cortisol. Supplementing progesterone can sometimes augment the production of other steroid hormones depending on how well the conversion pathways are working and if there is sufficient raw material (ie cholesterol) to begin with.

So it's possible that progesterone could be having an effect but I would urge you to use caution because generally large doses are required in order to see those kinds of effects. Progesterone is still a steroid hormone and caution should always be exercised when supplementing hormones. There are many better ways to increase the steroid hormones that generally influence OI than using large amounts of progesterone in my opinion.

Insomnia is a sign of progesterone excess as well. Most people find progesterone helps their sleep. If you are getting a paradoxical effect, I would encourage you to consider reducing your dose.

Ema

 

[Wendy B.]

Hi Wendy B. That's one of the questions I've wondered about. ....
...Thankfully I self-fixed it with high dose EPO and then some other stuff to kick up the estrogen and in turn that helped progesterone and I have my 6 year old daughter to show for it....
...Had low BBT for a while which, with other symptoms, made me think my thyroid was up to no good. I took high doses of sea kelp for a few months and that got my BBT up above hypothermal levels. Don't chart these days so don't know what my temp is doing, but I tend towards "freezing".

I'd be interested in how many of us have these probs.

I don't know what EPO, BBT, Hypothermal levels and "freezing" mean. Sorry!

 

[Wendy B.]

Progesterone is a steroid hormone and sometimes OI can be a result of low steroid production, specifically low aldosterone and cortisol. Supplementing progesterone can sometimes augment the production of other steroid hormones depending on how well the conversion pathways are working and if there is sufficient raw material (ie cholesterol) to begin with.

So it's possible that progesterone could be having an effect but I would urge you to use caution because generally large doses are required in order to see those kinds of effects. Progesterone is still a steroid hormone and caution should always be exercised when supplementing hormones. There are many better ways to increase the steroid hormones that generally influence OI than using large amounts of progesterone in my opinion.

Insomnia is a sign of progesterone excess as well. Most people find progesterone helps their sleep. If you are getting a paradoxical effect, I would encourage you to consider reducing your dose.

Ema

Ema, yeah that's my understanding too is that the progesterone is helping to increase aldosterone and blood volume. What would you consider "large amounts"? I started with 50 mg progresterone, then went up to 100mg. Started with cream, but doc switched me to pills (bio identical progesterone). I do have severe orthostatic problems wtih difficulty being upright at all. My aldosterone strangely shows normal, although my cortisol is quite low. Traditional treatments like adrenal supplmention, hydrocortisone, midodrine, fluorinef either didnt work or had opposite effect (made it even harder to be upright). My blood pressure on recent tilt table test went to 100/36 within 3 minutes, test was called off at 79/51 before he was worried i would faint, although I never have fainted. For me OI feels like overwhelming gravity that forces me to get horizontal or reclined. If this progesterone can help my quality of life I want to give it a try, but I appreciate your caution! Insomnia is my worst symptom to begin with before the progesterone I started. At first it made me sleep much better, then a week later it had the opposite effect. Hard to know what's going on.

 

[Ema]

Ema, yeah that's my understanding too is that the progesterone is helping to increase aldosterone and blood volume. What would you consider "large amounts"? I started with 50 mg progresterone, then went up to 100mg. Started with cream, but doc switched me to pills (bio identical progesterone). I do

have severe orthostatic problems wtih difficulty being upright at all. My aldosterone strangely shows normal, although my cortisol is quite low. Traditional treatments like adrenal supplmention, hydrocortisone, midodrine, fluorinef either didnt work or had opposite effect (made it even harder to be upright). My blood pressure on recent tilt table test went to 100/36 within 3 minutes, test was called off at 79/51 before he was worried i would faint, although I never have fainted. For me OI feels like overwhelming gravity that forces me to get horizontal or reclined. If this progesterone can help my quality of life I want to give it a try, but I appreciate your caution! Insomnia is my worst symptom to begin with before the progesterone I started. At first it made me sleep much better, then a week later it had the opposite effect. Hard to know what's going on.
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Low cortisol and aldosterone is generally indicative of HPA axis dysfunction which is reasonably common in people with ME/CFS. And HPA axis dysfunction can certainly cause OI! I know this personally unfortunately. But mine was thankfully very responsive to Florinef though it did take quite a while to titrate up to the effective dose.

Is your cortisol low all the time or is it too high at night? That could be one reason for insomnia.

When you write that your aldosterone test was normal, what does that mean exactly? A level of 4 on most lab ranges is technically normal but most people need to be in the upper half of the range to have sufficient aldosterone to prevent OI.

Are you taking the progesterone all month long or only during your luteal phase? 100 mg is not a large dose, particularly if only using it two weeks of the month.

Ema

 

[Shell]

I don't know what EPO, BBT, Hypothermal levels and "freezing" mean. Sorry!

Sorry Wendy.
EPO is Evening Primrose Oil
BBT is basal body temp. This is a temp taken first thing before getting out of bed. I had a long track of very low BBT that is around 95 to just over 96 degrees F. This is indicative of hypothyroid. By freezing I mean I still run very cold. So cold that even a slight fever can cause me to have seizures. I am very weird.

I used to do Fertility Awareness or Sympto thermal method of charting. This helped me keep an eye on health matters, get pregnant when I wanted to and avoid pregnancy when I needed to. It's a very good method for seeing hormonal problems.

 

[Wendy B.]

​

Low cortisol and aldosterone is generally indicative of HPA axis dysfunction which is reasonably common in people with ME/CFS. And HPA axis dysfunction can certainly cause OI! I know this personally unfortunately. But mine was thankfully very responsive to Florinef though it did take quite a while to titrate up to the effective dose.

Is your cortisol low all the time or is it too high at night? That could be one reason for insomnia.

When you write that your aldosterone test was normal, what does that mean exactly? A level of 4 on most lab ranges is technically normal but most people need to be in the upper half of the range to have sufficient aldosterone to prevent OI.

Are you taking the progesterone all month long or only during your luteal phase? 100 mg is not a large dose, particularly if only using it two weeks of the month.

Ema

My salivary cortisol is very low in a.m. and used to be too high at night, but that became much more normal. My sleep was always one of my worst probs wtih my cfs, but it became exponentially worse after taking prescribed Ativan (for sleep) for years, then going off of it. I had a devastating reaction where I never slept right again after the day i went off of it, even when they tried putting me back on Ativan or any other med or supplement. I seem to be in a category of people who possibly have damaged gaba neuroreceptors from the benzo and now have "post withdrawal syndrome". I have hope i can recover and am trying everything i can, just not sure what or when my body will go back to normal.

My "Aldosterone, U, Timed" test result: 5.55 (ug/24 hr)...[Range 0 - 19.0]

We are still experimenting with how best to take the progest. I have an appointment today to discuss further. The progest. seemed to be bothering my sleep so badly that he was trying me on one night on, one night off to see if my liver just wasnt processing it well enough and it was building up too quickly causing a yucky feeling the next day. I tried 3 weeks on, one week off. We're still playing with dosing/timing...

 

[Ema]

It sounds like you definitely have some HPA axis issues going on, probably complicated by benzo withdrawal. Getting steroid replacement right takes a lot of trial and error and a very experienced doctor. So many give up when a change in dose or form would give the desired results.

I got a very "hung over" feeling from oral progesterone. It is converted to a metabolite, allopregnanolone, which has similar effects in the body to the benzos. I did not care for this feeling at all and switched back over to the cream which is not converted in the liver so does not make this metabolite.

It's really hard to fix larger HPA axis problems with progesterone though the fact that it makes you feel better sometimes is a good clue to look at your endocrine system in general. Have you had an ACTH stim test ever?

Ema

 

[Ema]

My "Aldosterone, U, Timed" test result: 5.55 (ug/24 hr)...[Range 0 - 19.0]

Sorry, I completely missed that was a urinary aldosterone test and not a serum test. Urine tests are good for finding too much hormone but not so great for diagnosing too little. A serum test, done at 8AM, fasting would be a much better way to assess your aldosterone level in my opinion. All that can really be said from that test result is that you don't have too much by any stretch of the imagination.

Ema

 

[Wendy B.]

Ema, thanks for all your helpful info. My stim test was in normal range. This was why the endocrinologists never took my orthostatic issues seriously. Wasn't until i got the positive tilt table test recently that they started believing me. Strangely ten years ago my difficulty being upright was just as bad, though I showed a normal tilt table test even though I cried the whole time i was upright from the agony of exhaustion. I don't know why but now my TTT finally shows severe abnormalities. This really taught me to not always believe and go by test results that look normal.

With the Progesterone cream I actually got the better sleep/exhuasted feeling just like the pills. I know it's not supposed to be converted in the liver to do that, but it sure seemed to for me. After one week, the cream seemed to give me an "amped" response instead of exhausted (both day and night). Not sure why. Stranegly I did not get the calming effect when i switched to the pills for the last two weeks until the last two nights suddenly they seem to give me that calmed feeling that allows better sleep and extra tired in day now (could be also the catch up feeling from finally getting some sleep and body calming down, not sure). My reactions are often paradoxical to meds or supplmetns, it's a real puzzle. Fortunately i seemed to have found a naturopath who is very into experimenting with dosing and trying many things. He has also added molybdenum, zinc, and now taurine, horse chestnut and niacin for circulation and adrenal issues. This is positive.

On the possibly down side, he wants me to experiment wtih short burts of intense exercise (30 seconds full blast, one min rest, repeat up to 8 times as tolerated.) I'm not thrilled about this as it's agonizingly exhuasting, but he says that my orthostatic issues are so severe that he's trying to get the arterial/venous system to start making pathways back to extremities, so the blood doesnt just hang out in the torso/vital organs. I'm willing to try it for two weeks till next appointment.

 

[L'engle]

Such a useful thread. I'm looking into this now with cautious amounts of vitex.

 

[tango]

I had the opposite experience. My orthostatic intolerance started after bioidentical progesterone but taking estrogen to counter the progesterone didn't resolve it.

Estrogen helps with water retention / retaining fluid volume so it should be helpful for people with low blood pressure or low blood volume.

I know estrogen also affects vasopressin (antidiuretic hormone) storage and release but not the exact mechanism.

All the sex hormones are involved in fluid retention/regulation and sodium content but that;s as far as I got.

I tried reading up on this but my brain fog turned it into a hard slog. If anyone else can chime on I'd love to hear. I am getting more drops in blood pressure and OH seems to happen much more often now. I wish I knew what was triggering it

 

[tango]

From Vanderbilt University

"OI is significantly overrepresented in young women, and the severity of orthostatic symptoms sometimes shows a cyclical change. The exact reasons for this is unknown. Possible reasons for these cyclical changes include an estrogen-dependent change of the plasma volume or a direct estrogen receptor-mediated modulation of vascular reactivity."
https://ww2.mc.vanderbilt.edu/adc/38939

And another website links it to changing sex hormones
http://www.santamariamedicine.com/2...static-tachycardia-patients-menstrual-cycles/
Still trying to nut out where everything fits in!