Returning Back to Myself

by Sue
(Australia)

Hi Wray,

Thanks so much for this site. I have spent a lot of time on here in recent weeks :)

I have longstanding health issues - chronic fatigue syndrome for the last 15 years - and I have been slowly putting the jigsaw puzzle pieces together as to why. I have been perimenopausal for 10 years, since I was 34. As menopause comes closer, my CFS symptoms have worsened a lot. Added to the fatigue, the brainfog, the concentration issues, the inflammation issues, the myriad issues that go with CFS, I've also had a lovely little bout of feeling like I'm going a little nuts (you'll be unsurprised to know I also have/or have had high copper issues - I haven't had my levels tested so I'm not quite sure if those high levels have resolved yet. My regularly racing mind would say no, but our bodies are complex after all so who knows?)

Just before I started progresterone therapy I was having night sweats, the beginnings of hot flushes, anxiety attacks, and regularly feeling suicidal. I began taking it on 20 October, at a dose of 44 mg twice a day. Felt good for the first few days. Even from the first dose rubbed on my skin I knew I needed this. It was as though my body breathed a sigh of relief. And no wonder!

I soon began having estrogen dominance symptoms and so with a bit of trepidation started upping my dose. All those scare-stories about natural progesterone cream being unsafe to take in high doses I had to put to one side, because I would feel relief every time I upped my dose.

Over the space of several weeks I upped my dose until now I am taking 500mg a day in four divided doses and feeling MUCH more stable, although just the last couple of days I've been feeling more anxious again. I don't really want to go any higher than this; I have a feeling that this is the right dose for me ... but perhaps I do need to go even higher? I don't know, I'm a little confused. But I do think I am getting closer to having my period so perhaps that could explain the increased anxiety? I'm not sure.

My body feels like it's wanting to have a period. I can't remember if my period is late or if it's coming up soon. I've definitely been having those weighty heavy feelings that I tend to get before a period, and yet it hasn't happened. So maybe I am overdue, I'm not sure. But I've definitely decided to keep up with my dose right throughout this cycle.

Anyways, so apart from remaining anxiety, my depression levels have dropped a lot. I'm not feeling suicidal anymore. I'm not magically cured from CFS or anything but I am definitely feeling a little less fatigued. And I'm sure my adrenals are happy about progesterone taking a lot of the load off their overworking. My eyes have almost stopped their non-stop watering that's been going on for two weeks straight. Isn't it funny how you can have strong symptoms, like water retention, and not even really know you do until they get highlighted for you? I did not know until reading here that upper respiratory problems like sinus and rhinitis etc can be associated with estrogen dominance. My sinus issues have worsened over the past several years as well, so I look forward to their hopeful lessening.

Anyway, apologies for the long rambling :) I just wanted to leave my own story about the awesomeness of progesterone, and to get your thoughts on how long you think I should stay on this dose for before beginning to taper down?

Thanking you,
Sue

Comments for Returning Back to Myself

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Nov 17, 2014
Returning Back to Myself
by: Wray

Hi Sue I'm delighted the progesterone has helped you. And thanks for the kind words, I wish I could advise on how long you should stay on 500mg/day but can't. Some women have found their problems resolve in a few weeks, some I know have stayed on 1000mg/day for over a year, see here. Scroll to CL. I hope you're taking zinc to counteract the copper, zinc also lowers cortisol too, which could be affecting your Anxiety levels, see here and here. Take care Wray

Nov 18, 2014
Zinc
by: Sue

Hi Wray,

Thanks for responding. Yes, I'm feeling confused about knowing when to start tapering back from 500mg dose. I have just got my period so maybe I will stay here for another entire cycle, and then try and get a gutfeel on whether it's time to taper down. With such a longstanding health issue, it makes it more complicated too.

Yes, I have been taking zinc for quite some time as part of my treatment for pyrrole disorder.

Thanks again for your time and effort spent on this site. It's really great.

Sue

Nov 22, 2014
Zinc
by: Wray

Hi Sue I think stay on that amount until you are feeling happy about reducing. You didn't mention you had pyroluria in your first query. I'm fascinated by this and done as much research on it as I can as I feel I have it. I have yet to do a test, they don't do it in South Africa where I live, they just look at me blankly with a huh? I have just had another look on the web, and notice many sites in Australia giving info on it, you're lucky! I notice you don't mention taking vitamin B6, has no one suggested this? It's one of the vitamins which seem to be depleted by pyroluria, along with zinc. I tried taking 100mg/day zinc and 1g (1000mg) of B6 and it did help but I stopped after a bit, why I have no idea. One of the many symptoms I had was "difficulty remembering dreams", I never remember them, but as soon as I upped the zinc and B6 I did, it was amazing. I found this excellent Australian site on pyroluria here. This is one site I've referred to for years, Alternative Mental Health. They have pyroluria listed under depression, just scroll down to pyroluria. I did find many of my symptoms either went or were lessened once I started progesterone, I do hope they do for you. Let me know how you get on. Take care Wray

Nov 23, 2014
Pyroluria
by: Sue

Hi Wray,

Well that's very interesting that you think you have pyroluria! It's certainly become much more well-known since I first started treating for it, that's for sure. I didn't mention B6 in my previous post because if I spelled out all the supps I take each day we would be here forever :) But yes, i do take B6, the coenzymated version, P5P. I'm taking 50mg a day. I was taking up to 150mg but then I chickened out when my doc (not the -pyroluria doc but my CFS doc) did a blood test and said my serum B6 was really high. I panicked then about neuropathy and so reduced my dose. Glad to hear you are benefitting from the zinc and b6. How nice it is to remember our dreams.

Sometimes I feel like we are on the verge of something big with the whole pyroluria/progesterone/copper thing. I would love to know how many people with pyro are also estrogen dominant

Nov 26, 2014
Returning back to myself
by: Wray

Hi Sue I've also wondered if there's a role for progesterone in pyro. The change I felt once I started using it was immense, I don't think all my symptoms were from oestrogen dominance. But back then, 18 yrs now, I had not heard of pyro. But I do think the OD can worsen symptoms, as can high copper. The body is so complex, I get very frustrated trying to help people, as it's not only about progesterone. Luckily you did a huge amount of your own research too, and now take all the necessary nutrients. When you have a moment, please keep us updated with your progress. Take care Wray

Nov 26, 2014
Should I keep going?
by: Sue

Hi Wray,

Apologies for writing to you again - I know you have so many questions to respond to. I'm just feeling a bit unsure about what to do. I have been taking prog now for five weeks and 400-500mg for three weeks. I've started feeling more anxious again recently and have been dealing with a sinus infection for the past two weeks. Could I still be experiencing estrogen dominance symptoms at such a high dose? Is it still too soon for me to be able to definitively say this is a high enough dose? I don't know what to do. I'm at day 8 of my cycle. My period was a bit lighter than usual but lasted about the same length as before I started taking the progesterone. I took my dose up a little today, adding an extra 30mg per dose, so I will have take. 590mg for the day. My health issues are so longstanding that I'm not expecting everything to be magically fixed in a month but I'm just feeling so confused about what to do. Thanks so much. Sue

Nov 29, 2014
Should I keep going?
by: Wray

Hi Sue I didn't register you had only been using it for 3 weeks, that's far too soon to decide one way or another. It can take 3-6 months to iron things out. I see I haven't asked you about your vitamin D level which is strange as I ask everyone to have a test done. Particularly as you live in Australia, your government encourages everyone to stay out of the sun. No one who's had a test done there at my request has had a high enough level. If yours is low it would account for having to use so much progesterone, and the possible sinus infection. These are a few things which cause progesterone levels to drop, or to be less effective, I hope it might help ……

lack of or drop in Vitamin D
dark days, especially winter, probably because vitamin D drops in winter due to lack of sun
high oestrogen
high testosterone
low SHBG (sex hormone binding globulin), this binds testosterone and oestrogen making them inactive. SHBG drops due to consuming sugars, and all foods which convert to glucose, i.e. grains, legumes, sweet starchy fruits and veggies.
high LH
high FSH
high stress
high adrenaline (comes from Stress or excitement, and a drop in blood glucose), this stops progesterone entering the cells
sugars of any kind
Continued below

Nov 29, 2014
Should I keep going? Part 2
by: Wray

Hi Sue
large meals, because of the increased metabolic clearance of progesterone
alcohol, this reduces progesterone levels and increases the androgens, ie testosterone
high insulin
high level of phytoestrogens in the diet
oestrogenic herbs
oestrogen mimics or endocrine disrupting chemicals (EDCs)
contraceptives
HRT
Insulin Resistance
a defective luteal phase
high copper/low zinc
high prolactin

Take care Wray

Dec 02, 2014
Blarkybkark
by: Anonymous

Hi Wray

My D levels were quite low when I had them tested earlier this year. I increased my dose today - I wonder if that was the reason for me feeling less anxious or if it was because I've run out of damn progesterone and so the ED symptoms have declined. My new tub was meant to have been delivered today but my postal service has mislaid it. Awesome. So that could mean that I will possibly be without any for five days or so.

I'm wondering if that is the case if I should start from scratch and work up again? I don't want to have to take 500mg if I don't need it. Now I'm ramping up my D maybe I won't need to? I have noticed in the last few days that my heart palpitations have returned, waking me for a 5am visit. I didn't miss those I must say. I guess I will just dose according to symptoms and see how I go.

Dec 10, 2014
Blarkybkark
by: Wray

Hi Sue Please try to take 10,000iu/day of vitamin D, there's info about it on the active link I gave above. Your level should be 175 to 250nmol/L, I try to keep mine nearer the 250nmol/L mark. Most labs and doctors give a level of 50 to 75nmol/L, far too low. The reduced Anxiety could certainly be a result of the higher vitamin D. It's not pleasant to run out of progesterone, your ED symptoms would have reduced. I think it wise to begin again, I suggest trying 200mg/day and see how you get on. But please increase your vitamin D level. A lack of this reduces the benefits of progesterone. Oestrogen causes prolongation of the QT interval, which results in palpitations, arrhythmia, Torsades de Pointes and sudden death. Whereas progesterone shortens the QT interval, see here, here, here, here, here, here, here, here, here and here. These symptoms occur far more frequently in women who naturally have a long QT interval, rather than men who naturally have a short QT interval. Take care Wray

Jan 16, 2015
Update
by: Susie

Hi Wray,

Well, here we are mid January and I have been sitting on 850mg a day and extremely happy to be here. I am still quite debilitated by fatigue - though I have definitely noted a reduction since on my beloved p - and though I am still having periods where I feel crazy as a box of spanners, there are actually days where I feel confident that I'm not going to trip over into psychosis. The past two years that I've been treating my pyroluria and high copper (hellew, coffee enemas) I have been really terrified that I am going to fall over into the psych ward, and I'm not being hyperbolic there. Now, I've managed to dial back my paranoia to the generalized version of thinking my best friend hates me, with absolutely no evidence. It is exhausting spending energy you don't have telling yourself over and over again that your thoughts and feelings are symptoms, not evidence. But it's definitely getting better!

Cont ...

Jan 16, 2015
Question
by: Susie

Just wondering what your thoughts are about reducing when I'm stable (me, stable? That would make life easier!). As I'm on such a high dose of 850mg , do you think that I can afford to reduce quicker than 16mg at a time? I guess you being without a crystal ball your guess is as good as mine, but I would have though that I could drop faster

Jan 16, 2015
Question
by: Wray

Hi Susie That is a large amount, but so long as it's helping well and good. I would suggest reducing by 16mg initially for a few days. All being well you could try to increase the amount to double that and then sit back and observe! Please check your Vitamin D levels soon. It could be this is all you need. Cheaper than progesterone! Take care Wray

Jan 16, 2015
vit d
by: Susie

Ive been taking 20,000 IU of vitamin D for about six weeks now. I don't know how long it takes for it to work, I would presume not long. I too was hoping that the D would help me need less but so far no. It's a bit depressing as I'm broke, but I've been so desperate that I'll take what I need to take. Thanks for your suggestion

Jan 17, 2015
vit d
by: Wray

Hi Susie It's difficult to say how long it would take the vitamin D to rise as it's very dependant on stress. The greater the stress the slower it'll rise. Any trauma, physical or emotional, will drop levels sharply, much as it does progesterone. I didn't give you this paper on CFS, it might help, see here. I don't know what progesterone cream you are using, but you might like to compare prices with ours. We supply many people in Australia, so evidently the price can't be too bad! Take care Wray

Jan 18, 2015
cream
by: Susie

Dear Wray, because I'm taking so much at the moment it's more economical for me to use a 10%. But when I've reduced to something much more manageable I'm hoping to switch to you girls :-)

Jan 19, 2015
cream
by: Wray

Hi Susie I'm happy for you to use any cream, no need to use ours. It was just you said you were broke and I thought ours might be cheaper! Take care Wray

Sep 24, 2015
Update
by: Susie

Hi Wray,

I've just come back from my GP checkup where I had blood hormone levels tested amongst other things. My estrogen is high, despite the fact that I've been on the natural progesterone road for nine months or so. (Aside: the GP told me that I can't be almost menopausal because of that, which was irritating - why is this old way of one-size-fits-all still held to? Why have people not heard of estrogen dominance? Anyway, I shall let go of that irritation now ... :)

Also, interestingly, my vitamin D is through the roof. She said she's never seen it so high in anyone. I've been taking about 6000IU a day for months. Makes me wonder if there is still not enough progesterone in my body and so the vitamin D is sitting in the blood without being able to get into the cells. I'm not sure.

I dropped down my progesterone a few months ago to 250mg a day from the 500mg I was on for months. I've been feeling reasonable, with some bad days, but with NO libido. Now I'm wondering if I should be upping it again. I'm interested to know your thoughts.

Thanks so much. I soooo appreciate any help you can give.

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