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PCOS despite normal range hormones?

(11 Posts)
DoesItWearingWellies Mon 15-Aug-11 20:19:22

I am sure DD1 (22) has PCOS.

She is approx. 2st overweight and has trouble losing weight. Even when she signed up for the gym in January, went twice a week for an hour a time, plus 30mins swimming and eating no junk food, she only lost 4lbs in 4 months.

The poor girl is also rather hairy - she has a faint moustache, has "hobbit feet" (her description), a line of black hair from her navel downwards, plus has said she is very hairy "downstairs" - so much so it actually grows onto her upper thighs. When she shaves her legs/underarms, it has often grown back almost visibly by the same evening. We do not have any Mediterranean/middle Eastern etc blood so that can't be a factor in her hairiness. She is also blonde, albeit dark blonde.

Her periods are regular though, and her blood tests came back within normal parameters.

There is a family history of it too - I have PCOS (am also very regular wrt periods) as did my mother.

Is it worth her going back to her doctor and asking for an ultrasound, or are they likely to say she doesn't need it?

Or does anyone know what else it might be?

Thanks in advance.

Excess hair as a symptom pf PCOS would be caused by an excess of male hormones AFAIK. Did her blood results come back completely normal then? I'm pretty sure the blood tests are supposed to be carried out at a specific point in the menstrual cycle (I have pcos myself but it's been years since diagnosis and I can't remember!)

Is she on the pill at all? It could help with the hairiness.

I did have a scan to diagnose mine so it's worth asking the GP if they think it's necessary.

JanMorrow Tue 16-Aug-11 17:08:15

I have pretty much the same symptoms as your daughter, put on weight very easily, can't lose it, excess hair etc, but my periods are regular.

When I was first tested (and they have to do the blood tests right after you have finished your period for them to be accurate), they tested hormone levels, thyroid and for diabetes. My tests came back normal (all the testosterone levels etc) apart from one level which was ever so slightly raised (an androgen or something like that). Over 5 can indicate PCOS but mine was a 7..

When given the blood test results over the phone I was told "no, they're all normal". It was only because I went back to the doc (still concerned about the excess hair) that he told me about the slightly raised level, and I asked him to refer me for a scan, which he did. It showed I had PCO.. a sort of "mild" case as it were.

Get her to ask for a scan.. but there's not much they can do about it when you ARE diagnosed. If her periods were all over the place they'd put her on the pill (but they're not) and if she insisted they may put her on metformin, but you have to really insist on that one, it's not always routine.

Weight management is the biggest help, low carb is key.

AttilaTheMeerkat Tue 16-Aug-11 17:28:46

What hormone levels were looked at, do you know?. Many GPs are still ignorant when it comes to PCOS. Even if she is having regular periods she may well not be ovulating every single cycle; with PCOS a person is less likely to be ovulating regularly if at all. Her case does warrant proper further investigation as there is family history of PCOS being present.

PCOS is a very individualistic disorder.

The blood tests should be done at the beginning of the cycle. She should have had a day 2 test done to compare her LH level against that of her FSH level. With PCOS there is usually an excess of LH to FSH (these levels should normally be the same). If that was not done then that is poor practice. My guess is they've missed something fundamental here with regards to the blood tests; my guess is they did not compare levels properly if at all.

She should not allow herself to be fobbed off, she will need to be persistant however in order to get answers.

A low GI/GL: (glycaemic index/glycaemic load) eating plan is the way to go rather than low carb as it is more sustainable in the longer term.

DoesItWearingWellies Tue 16-Aug-11 22:53:14

I'm not sure when the blood test was in her cycle, it was about 3 months ago and her memory is worse than mine! But she did ask over the phone for her results and was told all normal, but has forgotten to ask the Dr on her subsequent visits for other things. She also said that the Dr didn't say anything about it needing to be taken at a certain point in her cycle, and they initially tried to fob her off because of the regularity of her periods, so I think she should see another Dr at the practice.

I believe they looked at testosterone, FSH, LH and possibly another, but asked DD and she can't remember exactly. Also checked for diabetes and thyroid (my DM (retired HV) is also fairly sure DD is hypothyroid, but that's another thread entirely!) and all normal.

She's not on the Pill - she reacts badly with terrible migraines that linger for months after just 2 tablets hmm

She (and I, obviously) know that a diagnosis doesn't mean anything in terms of treatment, but it would be nice to know. She's not worried about the implications of possible fertility problems (says she doesn't want children ever), but I know that she may change her kind if she settles down etc. and that PCOS may make it harder for her.

Many thanks for your replies.

DoesItWearingWellies Tue 16-Aug-11 22:54:17

change her mind!

A1980 Tue 16-Aug-11 23:22:56

Sounds like she may have PCOS, I'd request a scan.

Regarding the difficulty losing weight: my endo told me that's rubbish. Reason being if they shipped a few women with PCOS to Somalia for a few months I trust they'd lose weight.

AttilaTheMeerkat Wed 17-Aug-11 08:20:16

"I'm not sure when the blood test was in her cycle, it was about 3 months ago and her memory is worse than mine! But she did ask over the phone for her results and was told all normal, but has forgotten to ask the Dr on her subsequent visits for other things. She also said that the Dr didn't say anything about it needing to be taken at a certain point in her cycle, and they initially tried to fob her off because of the regularity of her periods, so I think she should see another Dr at the practice".

Normal my bottom re the test results; they have missed something. If the blood tests were also not done on the right days then the whole exercise was a waste of time. It will need redoing and she should have an internal ultrasound scan to see if her ovaries are indeed polycystic. It is certainly in her interests to find out the underlying cause of her symptoms and I would put a crisp £5 note on it that she does have PCOS.

If the GP continues to be unhelpful I would suggest either seeing another one within the practice or actually changing GP practice.

DoesItWearingWellies Wed 17-Aug-11 18:02:17

Thanks, Attila. DD has made an appt to see GP next Monday (earliest they can see her) but it's with the same Dr as before and she said she's not entirely comfortable basically telling the Dr she thinks she's wrong and asking for another blood test, so she's thinking about ringing back tomorrow to ask to see someone different, but says she feels awkward doing so as she has otherwise found this Dr to be supportive in other areas hmm

It makes me laugh that if this was one of her pets, she'd have no problem about questioning her vet about the line of treatment or asking for a second opinion (and I imagine she'd trust the vet more to do her blood test and ultrasound!)

Just to be clear, the blood test needs to be taken on day 2 - so the second day of bleeding?

Would it be worth her just asking if she can be referred privately (have health insurance) to either gyne/endo and cut GP out completely?

oldraver Thu 18-Aug-11 13:15:28

Attila is right in that PCOS is an individualistic condition and it can also lchange as time goes on. I was diagnosed after going to my GP with amenorrhea. I was told to be tested on day 14 but of course this was impossible as I hadn't had a period in over a year. I had one blood test several times due to inconclusive results. I late found out when at the hospital that it was my Testosterone level and it had been very high it was though 'a mistake' hence the test being repeated.

I also had started to have some hairiness, put on weight gradually (going up a dress size each year) and have what I now realise where episodes of hypoglycemia. A scan showed one ovary very swollen. At the time I knew nothing of PCOS and the relevance of the other symptoms

Over the years I went 1 year, 1 year, 2 years, and 5 years without a period. I then lost a lot of weight quite quickly and my cycle returned (10 years ago) to 28 days and I have since had another child. I am still in need of loosing more weight and if I dint pluck I could fashion quite a Goatee

Does It I would definitely get a private referrel if you can

oldraver Thu 18-Aug-11 13:16:41

Sorry what I meant say after all that was... I have very regular periods but STILL have PCOS

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