Pregnancy & Birth Clubs <
17/07/2013 at 11:43
Following on from my Metformin post (and my struggle to tolerate it)...
I've been to the doctors today, cried on them (I've never done that before! Cringe) and explained how unwell I feel.
They said they could tell I was unwell and the priority was to get better, so to reduce dosage back to 1 x 500mg a day.
They were confused as to why I was on it though.
They said they don't want to disagree with the specialist that has put me on it, but normally someone is diagnosed with PCOS, then given treatment.
I've not been diagnosed with anything yet.
She said my letter from when I was 15 clearly states PCOS not suspected because my bloods were fine.
She asked on what basis was I being treated for PCOS and I said because of my irregular cycles and acne.
She commented that my ovarian scan was fine, and that she was surprised that I hadn't been tested for various things, then given a diagnosis, then started treatment.
If I wasn't already confused by the contradicting conversations I keep having with doctors then I am now!
The only problem with my bloods was low progesterone (day 21, taken on the wrong day!), my ovarian scan was fine...
Based on what have you had your diagnosis of PCOS given? Was that by the doctor?
Is it progesterone they should be looking at or something else? My progesterone was low when I had them done when I was 15 to - yet that doctor said no to PCOS?!
17/07/2013 at 11:54
I had PCOS diagnosed when I went for a scan a couple of months ago. I had blood tests previously which were apparently normal, it was only because I was being scanned for fibroids that this showed up. I don't really know what I'm supposed to do about it and I've been too chicken to go back to the GP and ask.
How long ago did you have a scan?
I'm not sure what sort of help that is to be honest, other than just because some tests are fine it doesn't mean you don't have it and if your GP isn't sure then surely they should be referring you for further tests?
Have a anyway xx
17/07/2013 at 12:02
Thanks Sshh. Sorry to hear you were diagnosed with PCOS, are you TTC at the moment?
I had the scan only a few months ago, so recently. I fully understand that you don't have to have cysts etc to be diagnosed with PCOS, but I haven't been diagnosed with anything, I just feel confused and in limbo. Its not really helping with me wanting to push through with the Metformin as I just think 'do I even need this' ? (If that makes sense).
Its also confusing to be told at 15 you don't have PCOS, then told 10 years later that they suspect you may of had PCOS at 15 but you may have cleared it (have I, or haven't I?), and then told by another doctor that they don't understand why you are being treated for PCOS without a diagnosis of it :-(
I guess frustrated sums up how I'm feeling right now!
Mine was my bloods were elevated and so I was sent for a scan where it was confirmed, but exactly what Sshh said if your GP is that concerned shouldn't she be sending you for more tests?
Could you call the consultant's sec you saw and get them to clarify for you...?
17/07/2013 at 12:04
I was diagnosed by a blood test and then a scan.
The combination of the two confirmed I had pcos.
Background was I had come off the pill and my cyckes were very long and irregular so that was why they tested me. I had acne in my early twenties but this has gone now . I don't have any other symptoms- lots of hair, excess weight etc.
When I went back to gp to get my results and be told it was confirmed as pcos he said nothing is done normally, but as I was Ttc and having difficulties he then started me on a load more tests to check for ovulation and get me on a wait list to see a fertility consultant.
I would insist they either send you for a scan and bloods to test for pcos, or they refer you to be investigated for what else the problem could be. They shouldn't be giving you a treatment before a diagnosis.
17/07/2013 at 12:11
Cupcake - this wasn't my Dr, it was someone else today. My Dr doesn't seem to know what is going on either - she just called me and said I didn't ovulate (decision based on a wrongly timed 21 day blood test) and considered high risk of fertility problems so wanted to refer me.
Jellytot - Do you recall what it was about your blood that diagnosed PCOS? Low progesterone, or something else? I just can't get my head around the fact my progesterone was low when I was 15, yet it wasn't considered PCOS, its exactly the same now - and now they are saying I did possibly have PCOS when I was younger? Confusing.
Agreed - think I need to go back, second opinion from a specialist perhaps (who will hopefully send me for more tests?)
17/07/2013 at 12:13
Similar to Shhh for me. I had apparently normal blood test results for years, and a 'normal' scan about four years ago.
I went back in january to ask for tests again, and had a lot of blood tests, which showed as 'normal' for the dates I was supposed to be at in my cycle, but actually when the cycle days were corrected the blood tests were wrong. I also had a scan which shows my right ovary is enlarged and has a lot of cysts like a bunch of grapes, and my left ovary doesn't seem to be doing much at all, slightly small, no apparent cysts. I don't know what that means really.
The GP said it looked like PCOS but hasn't referred me to anyone and have had no treatment. I have most of the symptoms of PCOS, over weight, bad skin, irregular periods, but almost normal blood tests.
You need to see a consultant about it really and get it clarified. You don't want to be on metformin if you don't have PCOS, and you also need to know if there is a different issue or not.
17/07/2013 at 12:15
I guess I just thought that come Feb if we end up at a fertility clinic they would work out what actually was wrong (or confirm PCOS diagnosis) - that was kind of the impression I got off specialist too. She said how they do so many more tests and really look at the nitty gritty compared to doctors / specialists.
17/07/2013 at 12:37
I can't remember properly. I went to the gp as about five months after coming off the pill to Ttc my cycles were getting longer and longer each time. She asked if I had any of the other symptoms of pcos and I said no. She said she would do a blood test and see what it came back with. I went back to see her for the result but couldn't see the same gp si had to see another one who basically said the blood test indicated it could be pcos ( can't remember why though, i think it could have been progesterone level but can't be certain) , and that he would send me for a scan to confirm. I don't think my blood test was a day 21 one it was just taken on a random day.
After confirming pcos I then had to have bloods on day 2,7,14 and 21 to check if I was ovulating in order for the gp to be able to refer me to the fertility clinic. If its of any help though my day 21 said I hadn't ovulated- but I then went on to ovulate on day 26 and and nine months later my daughter arrived!!
17/07/2013 at 12:49
Whether you are 'diagnosed' with PCOS or not doesn't matter, it is just a label for a set of symptoms. You will still have acne and absent/very long cycles which are typical symptoms of PCOS, whether one doctor agrees you have PCoS or not. It is a rather subjective diagnosis anyway, and unlike something like cancer, knowing whether you have it or not wont change your future treatment.
Overall, each symptom is treated individually, so it really doesn't make a difference whether they are grouped together as PCOS or not. Stop fretting ;-)
You don't need cysts on your ovaries to have PCOS, just two of the criteria (acne/hair, cycle problems, weight issues, hormone imbalances).
From that point of view, I can see why the specialist thought metformin was worth a shot. It is cheap and very safe to take.
I really think you're over thinking the situation though. Metformin is very safe, if might help your fertility. Just keep taking it, stop worrying, and get on with things.
17/07/2013 at 13:02
The definitive diagnosis for PCOS is a blood test of your FSH and your LH levels - usually done at the start of your cycle. I can't remember what way round they are supposed to be, but one is supposed to be a lot bigger than the other. If they are the "wrong way round" i.e. the big one is small and vice versa, then that indicates the hormonal issue. They are other hormonal imbalances that could cause other symptoms, but may not be PCOS.
17/07/2013 at 13:05
Interesting Sarah - thats what I thought and what my original letter from when I was 15 said (i.e. not in keeping with PCOS and FSH / LSH are fine). They are still absolutely normal as well.
17/07/2013 at 13:10
In that case I personally would be reluctant to take the metformin without a definitive diagnosis. As far as I know the only "harm" it would do would be potentially to your blood sugars, but that can really make you feel dreadful. It's your call of course - and I bet you can't just stop taking it, you probably have to wean off. I'd be giving your specialist who prescribed it a call. I can see why they wanted to give it a shot, and it may well be that the side effects are normal and might get better after a while.
17/07/2013 at 13:17
I know it is 'safe' but its given to people with PCOS, if I don't have it and its not going to help then I'd rather not take it because it makes me feel awful.
I guess I just don't want to waste time technically treating PCOS if its not PCOS, and its time wasted hiding / leaving untreated something else that it could be.
17/07/2013 at 13:21
I totally understand, they couldn't figure out what was wrong with me either and all you want is an answer.
17/07/2013 at 13:25
What I mean is Metformin helps long/absent cycles and acne. I explained how it does this in a previous post.
Whether they are symptoms of 'PCOS' or not, metformin can help them.
Like I said, all symptoms of PCOS are treated individually. There is no single treatment for 'PCOS' itself as everyone presents differently and has certain symptoms that affect them more at different stages of their lives.
You haven't taken it long enough to know if you'll feel better in a few weeks or whether it will help you. Don't give up yet. A specialist gave it to you for a reason, ask the specialist your questions, not the GP. They are 'general practitioners' for a reason, they have a little bit of knowledge about a lot of things. Your specialist will have a LOT of knowledge about cycles and metformin.
17/07/2013 at 13:30
Also the LH/FSH ratio is now just one of the diagnostic criteria. Not THE diagnostic criteria. So again, you can have the syndrome but have normal FSH and LH levels.
17/07/2013 at 13:36
Ah, I see what you are saying. Sorry, its a lot to take in.
I won't give up but I have been under the weather anyway and its hard to know whether I feel so rubbish because of that + the metformin increase, or just the latter.
I think I will go back to 1 x 500mg and when I'm feeling better try again.
Part of me wishes I'd waited until after the wedding to try any of it as I am, hopefully understandably, freaking out that I'm going to feel this crap for my wedding / honeymoon if I carry on taking it. I was fine last week on the 1 x 500mg but since increasing to 2 x 500mg I've really struggled, I commute so throwing up all morning really isn't ideal :-(
17/07/2013 at 13:41
If you stop taking it. All the side effects will stop as quickly as they started.
If you think stopping now and restarting after the wedding will help you power through the nasty side effects, then go for it. I don't know how long away your wedding is. But the Metformin may take several months to have an affect, so you don't want to delay any benefits either! Have a think and a chat to your partner.
17/07/2013 at 13:45
A lot to think about :-( Its 2.5 weeks away, so close!
The doctor said today if I can't tolerate metformin they can write to my specialist and request she see's me and tries me on something else? Is there anything else that you know of that is similar, but different and therefore some may find more tolerable? The slow release version perhaps?
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