Newly diagnosed - metformin offered but u... - PCOS UK (Verity)

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Newly diagnosed - metformin offered but unsure of long term use

Shivanjali profile image
23 Replies

My daughter just got diagnosed, she is 16 years old. This was following hair loss and lack of regular periods. GP referred us to a consultant who took blood tests and then said she should go onto Dianette and asked us to come back in 3 months. The best thing she mentioned was the Verity website but didn't really offer much else. So we went back to GP who was much more helpful and when I suggested we wanted to try diet and exercise first, she agreed and also said that Metformin was probably a better option due to my daughter's weight. My daughter is very nervous and doesn't want to go onto long term medication. This is all so new to us and I am trying to find out as much as possible before going back to GP with a decision about Metformin.

How has Metformin worked for you and is this is a long term forever drug or will she be able to come off it if her weight comes down ? She is quite happy not having periods but I don't want to scare her with long term risk factors as she is already finding it hard taking everything in. Just trying to be positive but I am also anxious for her health future.

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Shivanjali profile image
Shivanjali
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23 Replies
Activity2004 profile image
Activity2004

Has she been tested for Diabetes? Metformin is usually used for type 2 Diabetics.

Shivanjali profile image
Shivanjali in reply toActivity2004

No she hasn't been tested for diabetes yet. GP wasn't keen on dianette for her as she is overweight and young. She also gave exercise "prescription" for local gym as we want to try diet and exercise before she is put on meds. So complex just trying to get my head round it all.

Activity2004 profile image
Activity2004 in reply toShivanjali

Check out the Diabetes Research and Wellness Foundation's website for the free leaflets on A Healthy Diet and Diabetes and Exercise and Diabetes. Both can be downloaded or listened to. Go to: drwf.org.uk/diabetes-leaflets

Hope this helps.

Casperlady profile image
Casperlady in reply toActivity2004

Actually it can be used to manage the symptoms of PCOS, while yes it is licensed for type 2 diabetes, it has been found to help with PCOS I am hoping to get my GP to put me on it

Activity2004 profile image
Activity2004 in reply toCasperlady

Oh. Okay. Didn't know that a person could use that for PCOS. Doctors never gave me the choice for it to be used.

I'm a type 1 diabetic who also has PCOS.

Casperlady profile image
Casperlady in reply toActivity2004

I haven't been given the option for it either I only recently found out that it can be used in treatment of symptoms, I want to be put on it. It seems that some GPs offer it and others don't but it's on the NHS website as a medication to treat it.

Activity2004 profile image
Activity2004 in reply toCasperlady

Where do you live? I'm in the USA.

Leeanne0484 profile image
Leeanne0484

I take metformin the trouble is the weight it just spirals all I do is look at a cake and the weight goes on. I have fallen pregnant naturally 4 times one of which was succesful unfortunately I miscarried the others. The only good thing I can take from these experiences is that i fell naturally. Best thing to remember is everyone is different so carbs might gain weight for one but not so much someone else. So trial and error see what fits for her. X

Shivanjali profile image
Shivanjali

Thanks all. Yes although technically not licensed for PCOS here in UK it is being used. I only know of it as a diabetes drug and just wanted to know if anyone has tried and for how long. From replies so far, it seems like it is a relatively new option to help manage symptoms.

Mummygoth1995 profile image
Mummygoth1995

Hi,

Was diagnosed at a similar age and put on metformin, am now 51. If she has the most common side effect which is nausea ask for the slow release form which I can tolerate without nausea. Think the diet will be the most help as have only just found out from this site that there are foods you should avoid. Obviously I have had little help over the years as have never been told about diet other than try to lose weight. Good luck and tell her not to worry as hopefully there will be no real side effects as my experience goes although everyone is different.

Hols969 profile image
Hols969

Metformin is not licenced in the UK for pcos and should only be given if you have been tested for insulin resistance (which is a side effect of pcos) but not all pcos ladies are IR (I am not). I went on the combined pill age 16 because of pcos and I am now 47 and for me the combined pill is the only thing that helps keep the symptoms at bay, it also makes weight loss easier as your hormones are more in balance (I am a stone overweight but happy with that at my age). GI diet is the way to go really so cut out all white carbs as they are the devil as far as pcos is concerned!

Shivanjali profile image
Shivanjali

Thanks everyone. We are back from hols now and she has started taking an inositol supplement. We will go to GP in about two weeks time.

Tinacros profile image
Tinacros in reply toShivanjali

Is the inositol working?

tasha-jayne5 profile image
tasha-jayne5

Hi, I'm a massive believer in the fact that diet has a huge influence on our health issues. Dairy and gluten are 'feeders' of pcos and can make it worse.

Have a look at pcosdietsupport.com which has tons of info on pcos including supplements like inositol, ovasitol etc.

Good luck x

cjp1985 profile image
cjp1985 in reply totasha-jayne5

Hi tasha, which inositol are you using?

tasha-jayne5 profile image
tasha-jayne5 in reply tocjp1985

Hi, I didn't actually get round to ordering any as I conceived within 3 months. I started the diet first and was going to move onto supplements as a next step but never got there, I was naughty and strayed off the diet while I was pregnant as due to the influx of hormones, I didn't have any symptoms but now 10 weeks post partum I'm easing it back in again as I've started to feel really lethargic and had some pain and headaches etc. again.

Shivanjali profile image
Shivanjali

Thanks Tasha-Jayne. I have looked at that website and that's where I read about inositol. . Tinacros, she has started taking that at a really small dose and we will see how she gets on. Diet and exercise seem to be really key to managing this condition. Trying to find some inspiration for low GI breakfasts that aren't porridge because that is the meal we struggle with.

tasha-jayne5 profile image
tasha-jayne5 in reply toShivanjali

Hi, sorry about the delay, I didn't get a notification about your reply. Have a look at deliciouslyella.com for pcos friendly recipes (she's a gluten free vegan so really healthy and she looks amazing!) she has a few different breakfast recipes. One of my favourite breakfast recipes (not on deliciously ella website) is mini omelettes, mix up some eggs with stuff like mushrooms, ham or bacon, tomatoes etc and then pour into a greased muffin tray and bake in the oven until nice and fluffy. I have a lot of smoothies and overnight oats as you can get away with eating natural full fat yoghurt (most of the bad stuff is removed during the process of making it).

Shivanjali profile image
Shivanjali

Just an update....we stopped taking the Viridian Inositol and Folic Acid supplement as she started getting really bad stomach aches. You're supposed to take two scoopfuls (scoop included) twice a day. We started with just under half a scoopful once a day - I thought we would build up if she tolerated - and increased by about half a scoopful every few days. She started having bad stomach aches which I didn't think could be down to such small doses but they disappeared completely after she stopped taking. We may try another brand another time.

We have changed diet to mostly wholegrain carbs, trying to include some protein at each meal (such as nuts/quorn/lentils/eggs/pulses, reducing portion sizes and having healthy snacks in between - fruit/nuts/oatcakes/yoghurt and lots more veg - especially green veg.

I had switched to wholemeal pasta/rice in her lunchbox but after speaking to a really helpful lady at Wild Nutrition, who explained that whilst switching to wholegrain was great, I could actually try switching the normal wheat based carbs with non wheat such as quinoa, pulses, oats which provide protein as well. Also meal planning has been really good, and we have simplified completely what we eat during the week - good for the whole family I guess.

Tasha-jayne5 I'll have a look at that and see if we can get some inspiration as breakfast is the struggle.

But the best thing is - she came on this week !!! I couldn't believe it was so soon after her last period about 8 weeks ago because one before was back in Feb ! I am hoping it is down to the changes we are making but I guess time will tell.

Stingy1 profile image
Stingy1

My daughter 13 has recently been diagnosed with pcos. She has all the symptoms, low mood, anxiety, raised testosterone, excessive hair growth, acne, weight gain, normal ovarian scan though

We've seen a gynaecologist & endocrinologist as GP admitted his knowledge on the condition is limited!

We discussed contraceptive pill but I'm not keen due to possible side effects ie. clots & depression. I'm hoping my daughter will be prescribed metformin as this helps lower testosterone levels & might help with weight loss.

Spironolactone is second in line if metformin isn't effective.

How is your daughter? Mine is feeling depressed & suffers anxiety & poor self body image. Refusing to attend school & I'm so worried about her.

mclellans10 profile image
mclellans10

I was put on Metformin 6 months ago for PCOS and my increasing weight gain and unfortunately it’s not helped me at all. I really wish it would because the weight just keeps piling on and even though I have a calorie controlled diet it doesn’t seem to be helping! Hope your daughter gets sorted xx

Stingy1 profile image
Stingy1

Thanks for replying.

Metformin seems to help in some cases but not all. I'm thinking maybe I'm pinning too much hope on this medication. I've read research & it suggests you need to take at least 1500mg daily as 1000mg daily doesn't have same effect. But it's just what I've read & of course I'm not recommending.

We're still waiting for all the blood test results, although FSH & LH have come back as normal. My daughter gets regular periods, they are just very heavy & painful.

Wish you all the very best

LisaEB profile image
LisaEB

I tried Metformin and was very ill from it, the first few days so came off it. Does your daughter have PCOS, as this why I was prescribed it.

I would highly recommend diet and exercise, I know its not an easy route, and presumably it is PCOS, it is harder. Look up PCOS recommend diets. E.g. no sugar, no white bread, white rice. Similar to being a diabetic in some ways.

The pill is good for the hormones, I was on it for many years, but of course that has its on side effects.

There is a product called Alpha Inofolic, which is supposed to have little bad side effects but help manage the effects of PCOS. However, it does some at a price.

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