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Misdiagnosed for 12 years as PCOS

by Bobbie
(USA)

Hello Wray,

I was misdiagnosed for 12 years as having PCOS. I am not in fact PCO. I never had high LH or FSH levels nor have I ever had any cysts on my ovaries. Recently my glucose and insulin were checked and are in great standing, in fact at the low end of normal. I have had now 5 miscarriages in 6 1 /2 years. I am never able to make to being able to test positive. I start to miscarry before I miss my period. I do have a healthy 3 year old, so after having him, I can see all the other times that I was in fact pregnant. The most recent came just last week. I have been charting my cycles for 3 months now. January I was most likely pregnant however after 5 days of sustained high temps, with 7 DPO spotting, by 10DPO my temps dropped and I started bleeding. February I did not ovulate, at least nothing sustaining, and March I did, and I knew I was pregnant, however by 10dpo I started bleeding. I had trouble with spotting for 2 years after my son was born. I was told I was PCO for 12 years because of hirstutism. I started taking Evening Primrose Oil last summer,( I had another MC on June 13, 2012)I was taking as much as 1300mg a day. Because of taking the EPO my hirstutism EXPLODED chest, midline, neck, face. I just found a new OB and he told me EPO can reduce progesterone levels. I had been instructed by a Natropath to take the EPO.
I started to take 200mg of Progesterone (Prometrium) on CD 20, I ovulated on CD 17. I think my levels are too low and need a good jump start. What would be a good dose? My OB wants to check my adrenals. I go next Wednesday for a 17-hydroxyprogesterone fasting blood test. What are your thoughts?

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Mar 21, 2013
 Misdiagnosed for 12 years as PCOS
by: Wray

Hi Bobbie How can they do that, say you have PCOS?! There are a number of obvious symptoms, and tests, plus a scan to check for it. Never fails to amaze me what they put women through. It's most interesting you say you miscarry before reaching your period, I doubt any doctor would believe you. Maybe your new one does. I have long believed many so called 'infertile' women aren't, but in fact miscarry like you do, and it could be each month too. And yet they never know. I'm fascinated the OB knew about the EPO. I'd be amazed if the Prometrium worked, for two reasons. One it's oral progesterone, which is the least effective Delivery system, "The liver and gut region removed a mean of 96 per cent of the progesterone entering these tissues", see here. Too little can make symptoms worse as it stimulates oestrogen. In this case it could cause a miscarriage. Secondly it should not be started 3 days after ovulation, but before it. It's always been believed, and still is by everyone including the medical profession, that progesterone is only produced by the corpus luteum after ovulation. But as far back as 1930 it was thought there must be another source. This was confirmed in the 1960's, and re-confirmed in the 1980's, that there is an exponential rise of progesterone about 50 hours prior to ovulation. This surge comes from the brain, see here, here, here and here. In the final 12 hours prior to ovulation, progesterone makes a further surge. An early luteal rise is essential for the embryo to implant and for a successful pregnancy, see here. Continued below
Mar 21, 2013
 Misdiagnosed for 12 years as PCOS Part 2
by: Wray

Hi Bobbie It's during the 12 hour surge that the progesterone should be started. Often women don't get the initial 50hr surge of progesterone, it only rises after ovulation. Unless it rises quickly it will be too little, too late. Another thing please check your vitamin D levels, this is so essential for conception, pregnancy, the growth of the foetus, and for breast feeding. We do have a page on Pregnancy you could look through, there are some excellent videos at the end on vitamin D. And another one here. You might consider taking taurine, another essential for the growth of the foetus, and in particular for breast feeding, see here, here, here, here, here and here. I can't see the point of the 17-hydroxyprogesterone test, yes it is made by the adrenals, but usually only rises in the third trimester. Unless he knows something I don't, which is very likely! Miscarriages are usually treated with 200-600mg/day progesterone, but in a form which absorbs well. Creams, suppositories or injections. These apparently are painful and I don't believe give enough progesterone, being only 50mg. I have used suppositories before, not my idea of fun! So I prefer the cream, which I know works very well. A distributor of ours has just helped her 13th woman struggling to conceive to do so. Take care Wray

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