To think my doctors have been negligent?

[foreverold]

I was diagnosed with PCOS in 2018. Had my HBA1C tested every 3 months since then as fasting bloods were high a few times.

During the summer I began to feel unwell, despite healthy eating and daily exercise (cardio/weight training/yoga) I felt constantly exhausted. Sleep 10 hours a night plus 3 - 4 hour naps in the day. Has constant dry mouth despite drinking 4-5 litres of water a day, peeing more and feeling quite nauseous.

On last HBA1C test I was told I was pre diabetes, given 500mg of metformin (which is a ridiculously low amount) and basically left to get on with it.

I felt okay for a few months but have now started to feel exactly how I did in summer, nausea, napping, dry mouth, peeing more.

I have my HBA1C tomorrow and I'm pretty positive they will tell me I am now in type 2 diabetes category.

I feel really frustrated as feel I have been left to get on with it! AIBU? Or is there really not anything else they can do? I really feel the doctors dealing with this have been incompetent and not helpful in the slightest.

[Forwhatitsworth101]

No just surprised people come to mumsnet for free medical advice when they have no idea if the person they are speaking to is who they say they are. I think the GMC has specific advice on this. In your shoes I would pay for a private opinion if you can.

[OurChristmasMiracle]

I also have PCOS and metfornin is given to treat the insulin resistance that comes along with this which can indeed lead to diabetes. The doctor has given you a starting dose which they will I’m sure review after blood test results. If you feel it’s no longer working or no working effectively then it’s you as the patient that needs to tell your doctor that.

Metformin doesn’t treat PCOS or the hormonal imbalances that it causes resulting in missed or absent periods so your doctor is correct in saying it won’t make your periods come back.

If you aren’t feeling better you need to go back and discuss further options.

[RaidersoftheLostAardvark]

So to clarify are you on metformin for PCOS or for pre-diabetes? I do think you are being very unreasonable- so far as you know, you do not have DM! Diabetes is not diagnosed just by random glucose- the HbA1c gives a picture of what your blood sugar is doing over time. They have done repeated blood tests and at your request are doing these again at short notice. Metformin will not stop pre-DM turning into diagnosable diabetes. Lifestyle changes may achieve that, and that's on you.

[StoryOfANewName]

The symptoms you are experiencing must be making you absolutely miserable and completely disheartened. I am sorry you have not felt properly heard or treated and I hope this will improve for you.

Just a small thing you could read up on, in case it possibly might help. Please ignore this unsolicited advice if you prefer, but I was just trying to think of anything you might try in the meantime: there is evidence that a healthy gut microbiome can help with PCOS and blood sugars. As well as avoiding sugar/excessive carbs, as you already are, you could eat probiotics and prebiotics every day. Unfortunately, most artificial sweeteners have been shown to spike blood sugars in the same way as sugar so it is better to avoid them. Pure stevia doesn’t, but unfortunately new evidence shows it upsets the balance of good bacteria in the gut. A simple book that might be helpful is “The Clever Guts Diet” by Michael Mosley.

You are a very healthy weight. However, some people with PCOS, diabetes and prediabetes find their symptoms only improve when they keep their weight at the bottom end of healthy. I wondered if this is something you had experimented with. Roy Taylor and Michael Mosley who have been mentioned upthread are both worth a read on VLCDs and fatty livers, diabetes, PCOS. But if there’s a risk of type one diabetes, this must be checked out first.

I hope you are not too exhausted today and get sympathetic help ASAP. I would add that in my own experience, some NHS care/NICE guidelines can be years behind latest research. Ideas get entrenched, and progress is slow. (As far as I know, the metformin dosage you were given is “correct” for the numbers you were showing on Hba1c, but most with those numbers would not be suffering the debilitating symptoms you are, so taken holistically you need to be offered more options and things need to be investigated further.)There are many good HCPs out there who base their care around the patient and listen to their needs and respect their patients’ expertise on management of their conditions. If you don’t get on with those at your surgery, I’d strongly recommend asking friends/family for recommendations seeing about moving somewhere else. This is aside from the private endo appointment, which I do hope will be a turning point for you.

It’s also worth bearing in mind that as hba1c is an average, hypos could be bringing yours down to 7.2. Those are dangerous and again need checking, especially if T1DM seems a possibility. Do you know about continuous glucose monitoring? It would cost you about £50 or so, but you could monitor your bloods continuously for 2 weeks to get a better idea of whether you’re having dangerous blood sugar dips.

Good luck with it all.

[alfagirl73]

I totally understand that you are feeling unwell and frustrated but I don't think your GP has been negligent.

When starting someone on Metformin they have to start low; many people cannot tolerate Metformin so it is sensible for them to start on a low dose to see how you tolerate it and to establish the lowest dose that will mange your condition. There can be a lot of adjustment needed with meds for diabetes to get the right medication at the right dose for each patient. There isn't a "once-size-fits-all" drug/dose.

I'm not clear from your post at what point you realised the Metformin wasn't as effective as it was at first - but getting symptoms/blood glucose under control is a two-way street. The GP will arrange blood tests at the recommended times but it really is on you to report to the GP any change in symptoms in the interim period. It does sound like you have requested an appointment now that you have realised that the Metformin isn't working as well. It is reasonable for the doctor to do another blood test at that point to see exactly what's going on before adjusting your meds - otherwise the GP doesn't know if your bloods are massively high or just a little elevated - ie. how much to increase your meds by or whether another drug might be more appropriate.

I get that you feel horrible but I really don't see what the doctor has done wrong here. See what your next blood test shows up and work with your doctor to establish the best medication at the right dose for you. As soon as you experience anything that indicates the medication isn't as effective - let your GP know so that adjustments can be made. Otherwise the GP can only assume that all is going well.

[EveryDayIsADuvetDay]

did you look at or follow any of the online programs on the diabetes uk website?
agree with PP that secondary services have diminished with pandemic, but this seems a logical place to look if you were concerned about diabetes and had had conversations about pre-diabetes.

[JerichoGirl]

@StoryOfANewName

The symptoms you are experiencing must be making you absolutely miserable and completely disheartened. I am sorry you have not felt properly heard or treated and I hope this will improve for you.

Just a small thing you could read up on, in case it possibly might help. Please ignore this unsolicited advice if you prefer, but I was just trying to think of anything you might try in the meantime: there is evidence that a healthy gut microbiome can help with PCOS and blood sugars. As well as avoiding sugar/excessive carbs, as you already are, you could eat probiotics and prebiotics every day. Unfortunately, most artificial sweeteners have been shown to spike blood sugars in the same way as sugar so it is better to avoid them. Pure stevia doesn’t, but unfortunately new evidence shows it upsets the balance of good bacteria in the gut. A simple book that might be helpful is “The Clever Guts Diet” by Michael Mosley.

You are a very healthy weight. However, some people with PCOS, diabetes and prediabetes find their symptoms only improve when they keep their weight at the bottom end of healthy. I wondered if this is something you had experimented with. Roy Taylor and Michael Mosley who have been mentioned upthread are both worth a read on VLCDs and fatty livers, diabetes, PCOS. But if there’s a risk of type one diabetes, this must be checked out first.

I hope you are not too exhausted today and get sympathetic help ASAP. I would add that in my own experience, some NHS care/NICE guidelines can be years behind latest research. Ideas get entrenched, and progress is slow. (As far as I know, the metformin dosage you were given is “correct” for the numbers you were showing on Hba1c, but most with those numbers would not be suffering the debilitating symptoms you are, so taken holistically you need to be offered more options and things need to be investigated further.)There are many good HCPs out there who base their care around the patient and listen to their needs and respect their patients’ expertise on management of their conditions. If you don’t get on with those at your surgery, I’d strongly recommend asking friends/family for recommendations seeing about moving somewhere else. This is aside from the private endo appointment, which I do hope will be a turning point for you.

It’s also worth bearing in mind that as hba1c is an average, hypos could be bringing yours down to 7.2. Those are dangerous and again need checking, especially if T1DM seems a possibility. Do you know about continuous glucose monitoring? It would cost you about £50 or so, but you could monitor your bloods continuously for 2 weeks to get a better idea of whether you’re having dangerous blood sugar dips.

Good luck with it all.

That's such a nice post x

[toomanycremeeggs]

@Rollmopsrule

Op your getting a really hard time on here. I think people hear the words Type 2 diabetes and think they can give the person a bashing and act like they know everything about the condition because they believe its all down to being overweight and lazy. Everyone's an expert it seems when it comes to diabetes. Your situation sounds really difficult. I would have thought in normal times you would at least some guidance how to avoid pre diabetes developing further if that could have been possible. If you feel your Gp has not provided adequate care I would flag it up with the practice manager or at least ask what care you should expect in your situation. There is so much variance between the quality of Gp care - you are absolutely right to raise questions.

Op got a hard time because Op was incredibly rude to helpful posters.

That kind of rudeness doesn't go down well.

[knittingaddict]

@Wondermule

Just a thought but have you had your pancreas checked? 7.1 seems very high for type 2. There are certain conditions which cause diabetes as a symptom, if that makes sense.

No it really isn't. My mum's type 2 went into the 20's. Now that was high. Normal is 4 to 7.

[Wondermule]

@knittingaddict

Yes it really is. You’re confusing HBA1C with an individual blood glucose reading. If HBA1C was in the 20s you would be in ketoacidosis and dead very shorty.

[knittingaddict]

Well she was hospitalised for it. She wasn't taking medication properly due to dementia.

[Wondermule]

@knittingaddict

Well she was hospitalised for it. She wasn't taking medication properly due to dementia.

I’m sure she was, but OP was posting her HBA1c not her blood glucose reading. Two entirely separate things.

[BrumBoo]

This is why medical issues shouldn't be posted in AIBU. It does nothing but bring out Armchair Doctors who 'know these things' because their mum/neighbour/someone on Facebook has it much worse .

I'm not surprised the op is getting frustrated with people, especially the ones who come out with 'be kind to doctors!'. We collectively know the pressure and strain the NHS is under, but that's of no use to the op who's suffering for it. Never mind the fact that women have always been ignored or treated abysmally for their health issues. The sense of feeling ignored can heighten worries and fears even if the worst case scenario doesn't happen.

@foreverold I hope you feel better soon, and the blood results give some good news.

[Emeraldshamrock]

Like a pp Dsis has health insurance she was able to book in with an endocrinologist as an adult after spending years as a teenager being advised the excess hair tiredness and weight was PCOS.
She eats a specialised diet for hashimoto's.
I'm not sure how it is diagnosed.
Like everything money talks.

[HildegardNightingale]

They’ve changed the HBA1C readings now to a different system. My last one was 48. I’m a diabetic controlled by metformin.
They always start you off on a low dose of metformin and build you up slowly. It has a few nasty side effects and your body needs to get used to it.

[Focalpoint]

Has anyone checked your keytones?

[Forwhatitsworth101]

@BrumBoo and @Emeraldshamrock

Thanks for putting it better than me- I think it dumbs down the medical profession that you can just come online to a website like mumsnet for specialist advice.

For a lot of chronic disease there are dedicated websites for patients where Dr’s can be very transparent about who they are. I actually contribute to one of them.

Someone posted a lot of Dr’s don’t know what they are talking about! Of course most Dr’s are juniors Dr’s in training and as such will not be as knowledgeable about a condition as complex as diabetes hence the need for specialists!

Diabetes is one of those well known conditions that in my opinion is actually difficult to manage and it’s not as simple as type 1, type 2...

[dontdisturbmenow]

Never mind the fact that women have always been ignored or treated abysmally for their health issues
Oh and here we go with women have it so much worse! Men are much more likely not to be treated for underlying conditions because they are less likely to seek medical advice.

As a poster stated above, if a GP start on a treatment and symptoms come back after some time, it's our responsibility to get in touch with them to let them know do they can amend accordingly.

Expecting GPs to make follow up appointments sooner than normally necessary or contact each patient's to ask how they are faring is totally unreasonable. The world doesn't revolve around us individuals, we need to take responsibility for our care.

In OPs case, she should have made another appointment with her GP as soon as she felt unwell again rather than wait to be very ill again and then blame them for not treating sooner.

[Aisforharlot]

haven't rtft, but it occurs to me that some of your tiredness may be down to simply not eating enough.
Well done on good protein levels and the exercisd, especially strength training which can improve insulin sensitivity.
I also have pcos and strength train, and I get SO TIRED if I don't eat enough. Fatigue is a problem Gibson's extent perpetually though.
You are having almost no carbs, would you feel comfortable experimenting with adding some around workouts to see if your energy improves?

[Aisforharlot]

No idea what autocorrect did there, meant to some extent.

[bookworm34]

To be perfectly honest your tiredness is more likely you're not eating enough. You're skipping meals and having small portions... your body needs food to have energy.
As to accuse them of being negligent YABU.

[SionnachGlic]

Change your GP if you are not happy, have your care looked after by specialist consultant until you get it under control & you find a GP you happy with. You are paying alot of money as you said for someone you have already decided hasn't a clue. When you first decided they had no clue, you should have gotten referred to a consultant then, someone you have faith in.. From what other posters say about the drug you were prescribed & pre-diabetes treatment, it doesn't sound like medical negligence which carries a very high threshold of proof. You can be frustrated of course & extremely concerned & worried that your medical condition is still unresolved. I hope you find the root cause & the solution.

[Sahm101]

I really can't understand the bashing and mean comments to op.

[Changeismyname]

To be negligent they would have had to acted in a way no other reasonable GP (not a specialist) would have done. Very frustrating, yes, but almost certainly not negligent.

[foreverold]

Thanks everyone for the helpful and kind responses!

I have not had my ketones checked as far as I am aware @Focalpoint. Am I right in saying this is checked through urine?

@Aisforharlot I would be open to perhaps add a few carbs on exercise day it's just I've read so much online about how carbs spike insulin so I almost view them as the enemy now. But i would be willing to try if it might improve my tiredness, even just things such as adding a sweet potato at dinner or something or having a banana maybe. I never thought of that.

Thanks to other kind posters who have posted advice, I will certainly look into everything that has been mentioned.

A PP said about a continuous blood glucose monitor, I didn't even know this was a thing and have found one very reasonably priced and so am going to order once I get hba1c results back. So thanks for that, I think it will be ideal to pinpointing what my body isn't tolerating well as will keep a food diary alongside it.

That's my test done at 8 am this morning so will hopefully have results by Friday afternoon.