PCOS UK (Verity)
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A little advice for an upcoming GP appt please

Hi everyone,

first time poster, I'd better explain a little about me (apologies, this may be long!)

I was diagnosed in 2001 at the age of 26 by my lovely GP who then moved away from the area :(. Diagnosis was made by blood test results, ultrasound and symptoms (increasing hair in the wrong places, acne, darkened skin under arms etc). I was put on Dianette which was wonderful, but it made my BP too high so switched to a POP pill. Saw a consultant who basically said come back when you want to conceive. Since then I've had no help or assistance and have been managing on my own.

I received a questionnaire from the GP practice about frequency of periods a month ago. I returned that stating that it was maybe 1 per year. I got a letter asking me to contact them about it and detailing treatment options. Obviously I checked up on where this information had come from and landed on the NICE PCOS site. I've never had screening for cardio risks or glucose intolerance. Pointed this out to the Dr who arranged for a blood test. Results have come back as normal (tested for cholesterol, liver things and HBA1c).

I'm not very happy with the lack of help or treatment options. I believe I'm insulin resistant but this was ignored in the past. After 17 years I'm still larger than I should be, hairy, darkened skin and at 43 still get acne. Although the HBA1c came back as normal (37 mmol/L range 20-42) I eat a keto diet and was a bit surprised it wasn't lower.

My questions are, what tests should I ask for and what should I expect them to do? Do I need to see a consultant and if I do, should it be a gynae or endocrinologist? Is HBA1c an accurate test of insulin resistance? I've had no hormone tests since I was first diagnosed. Should these be repeated?

If there's anything else I should ask or expect, please let me know. The more I think about it the more annoyed I get! :)

Many thanks

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Frustrates me a little as the HBA1c does one blood test only - we need a blood test then a sugary drink and then a further blood test as this shows how the body copes with sugar. They say they dont do that test any more but they do but is more expensive so fob you off with the one. I think its called a glucose tolerance test.

I was diagnosed 25+ years ago and yes there is more information nowadays but as much help as their was for me. Generally though you have to control it which I have done by doing low GI and combined contraceptive. There is actually very little they can do as it is an endocrine disorder.

You must have 4 periods a year to reduce the risk of cancer (the womb lining needs to be shed otherwise it can cause all sorts of issues and your GP should not be ignoring it or suggesting you are lucky to have a lack of periods). They can give you something to force a bleed.

I personally wouldnt worry about being retested as you have PCOS - cysts on the ovaries can come and go as only a symptom but if you have none they often rule out pcos as they still believe the cause of pcos is the cysts on the ovaries, and blood tests can come back normal depending on the time they are done, so I personally wouldnt muddy the water!! I know lots of ladies who have been diagnosed and then retested and told it isnt pcos which is wrong.

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Thank you so much for your answer- especially on such a lovely day as Saturday. :) Unfortunately other health issues have taken over- the front of my neck is swollen so it looks like I've got a rubber ring round it. If it's not one thing it's another :sigh Will wait until the investigations for that are complete before I start asking about tolerance testing.

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