Doc says I no longer have PCOS but thin hair & weight probs

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Doc says I no longer have PCOS but thin hair & weight probs

Postby Morgs » Wed Jan 07, 2015 9:21 am

I'm hoping someone might be able to give me some advice. Sorry if I ramble but I just wanted to give all the information I can. I was diagnosed with PCOS about 5 years ago when my husband and I were trying for a baby. I remember that the diagnosis only came once I had been seen by a fertility consultant. Prior to this, no-one had suggested it even though I had blood tests, an ovary scan and had seen various doctors. I had ovarian drilling and luckily went on to have 2 lovely children. I know I definitely had it because the consultant showed me pictures of my ovaries and they were huge. Once I had had the diagnosis, I did the research and lots of my health issues seemed to make sense. I had always suffered from thinning hair and had struggled terribly with my weight all my life. By the time I got to 20 I was over 15 stone at 5’4’’. I dieted at this age and am now a bit under 10 stone but to keep at this weight has meant I have been on a strict diet for over 20 years and I simply cannot eat the same amounts as other people and really struggle to maintain this weigh. Now I have had the children, I thought I would be able to look at being prescribed something to help with my hair loss and weight but when I went to the doctor, she took a blood test and when I called for the result, she said, ‘sit down if you are standing, you don’t have PCOS anymore’ and so there would be no point prescribing the hair loss treatments. I was so taken aback that I didn’t even mention the weight issue as I was prescribed Orlistat by a relatively sympathetic doctor a few years ago which I take occasionally if I deviate from my strict diet just to give me a bit of a break from the diet boredom. To get this thought, he described me as a food phobic which I am not, I just can’t eat the same as everyone else! Is it possible that I do not have PCOS anymore or could it be that the blood tests could be interpreted differently by a specialist? I felt such an overwhelming relief when I got my diagnosis as it all made sense with my hair / weight and now that ‘answer’ has been taken away. I would be really grateful for any thoughts / experiences / suggestions. Thanks.
Morgs
 
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Re: Doc says I no longer have PCOS but thin hair & weight pr

Postby wrigglepup » Sat May 16, 2015 8:01 am

Hello morgs, I don't eat normal British food anymore, have you tried eating more grains? Eastern Europeans eat alot of buckwheat, it isn't sold everywhere but it full of nutrients I have read that it's good for hair and skin, it's not very calorific either, Gluten free and low GI. I am replacing rich and potatoes with it. Cook it gently it should not be mushy.
Do you follow a low GI diet? I found it much more easy to follow and really satisfying as I have lost my weight while still having decent portions.
Hope this helps xx
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Re: Doc says I no longer have PCOS but thin hair & weight pr

Postby ZM » Mon Jun 29, 2015 2:54 pm

I was told I had PCOS ten years ago and had an ultrasound as part of the confirmation process - they said they could clearly see characteristic PCO. I was then on Dianette OCP for 8 1/2 yrs which controlled all my symptoms, but I was forced to come off it last year. About 75% of my hair fell out and the acne started to come back (mildly though as I have done Accutane recently knowing they were going to force me off the COC pill). During investigation for another issue I was given and ultrasound and at that appointment they offered to check my ovaries while I was there. They said I did not have PCOS (five months post OCP though so may not have been ovulating at that point yet). I went back to my Derm due to the hair loss and acne and discussed this with her. She feels that my problem is androgen hypersensitivity, and the fact that I convert Testosterone to DHT (10x more potent). This could cause these issues and give a hormone blood test that appears in the normal range for testosterone itself and obviously no ovarian discrepancies on ultrasound. I take Spearmint capsules and Spirinolactone 100mg. I tried to come of the Spearmint when I started the Spiro but my hair starts to shed if I do, so still on 6x of those a day.

ETA: I eat normally and am 10st 6, but I do huge amounts of exercise my body fat is 21% and my muscle mass is 40%. Have you checked if your weight is actually due to body fat or is it muscle mass due to testosterone levels which will promote muscle build?
Self diagnosed: 1999
Formally diagnosed after much pressure!: 2005
Current regime: Massive amounts of weight bearing exercise, and controlled diet. Have taken/tried Metformin, Dianette, Yasmin, Marvelon, Accutane. Now on Spearmint, Agnus Castus and low dose Spirinolactone.
ZM
 
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