Author Topic: metformin problems  (Read 2094 times)

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Offline Moby

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Re: metformin problems
« Reply #15 on: 15 September 2016, 11:05:53 PM »
I found this link very interesting.
]lhttp://www.mthfrsupport.com.au/vitamin-b12-reference-range-level-set-low/]www.mthfrsupport.com.au/vitamin-b12-reference-range-level-set-low/]]lhttp://www.mthfrsupport.com.au/vitamin-b12-reference-range-level-set-low/

B12 absorption is another can if work so where several factors could be to blame, eggs stomach acid problems, lack of intrinsic factor. Veggie diets etc etc.

Not as clear cut as just 'metformin'.

Edited by Patti to make link clickable.
bw
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Offline Alan

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Re: metformin problems
« Reply #16 on: 15 September 2016, 11:15:02 PM »
I was 140 Patti. Dr Chandy from the B12d registered charity says it is severely low and my symptoms are many ranging from extreme pain all the time in legs and arms, to sore mouth/tongue, exhaustion, palpitations and tons more. He says my symptoms are neurological and the NICE guidelines are B12 injections every other day until there is no more improvement. I had the same advice from the pernicious anemia/B12 society. However GP is playing this down and said I could have 5 injections over 2 weeks and then nothing more for 6 months. Dr Chandy says this is ridiculous and I could go blind and/or be in a wheelchair by then. So I have taken it into my own hands, bought hydroxycobalamin from Germany and inject myself alternate days according to NICE guidelines.
I read the earlier posts and this. Just shaking my head at your poor treatment; it is so sad you must take it into your own hands as you have but I'm glad you have.

As a lateral issue, I'm wondering about your diet. I know Patti has an excellent diet and still needs injections so a good diet is not a cure-all, but it can certainly help. Do you include plenty of meats, fish and seafoods in your menu?
Quote
She says I can remain on metformin but can reduce the dose if I wish.

If your blood glucose numbers are good that may be very wise advice in the circumstances. I drop my metformin when I have gastro problems while travelling. It takes a long time before I notice measurable changes in my blood glucose control. With the same logic, when you have significant B12 problems the BG benefits from metformin may be heavily outweighed by the B12 depletion it can cause.
Cheers, Alan, T2, Australia.
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Offline Pattidevans

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Re: metformin problems
« Reply #17 on: 15 September 2016, 11:23:57 PM »
Lizzie

Thanks for the links I am still researching them.

Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


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Offline Pattidevans

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Re: metformin problems
« Reply #18 on: 16 September 2016, 10:55:00 AM »
Thanks for the links Lizzie.  I am gradually reading through them.  Interesting about hair loss as I have been moaning about that for ages!
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Lizzie53

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Re: metformin problems
« Reply #19 on: 16 September 2016, 12:29:06 PM »
It is a very steep learning curve Patti and there are a couple of Facebook support groups that I have found helpful. The most help though was from Dr Chandy at the B12d registered charity. If you contact them he will most probably send you an email giving you a time slot to call him. He spent most of his working life as  a GP researching this and has treated many people successfully. It was a turning point for me. He feels I have had this problem for many years and in fact when I worked for the army in Germany 40 years ago I had some injections then due to exhaustion and pain. Then in my late 20's and early 30's I had several miscarriages followed by a baby with spina bifida occulta. All through my reproductive life I had very heavy periods All this apparently is a symptom.
It seems that GP's have almost no training on vitamin deficiencies and you would be very lucky if you find one who is knowledgeable or even interested. Mine have been a nightmare and i have lost all confidence in them. Yesterday I had a routine appt with the diabetic hospital clinic. I came home and cried (again). Now I have a very lovely life (well would have without all this pain) but the endo said these terrible symptoms are probably down to a modern lifestyle and rushing around doing too much!!!!!! I don't rush around and I don't do too much ever! She clearly didn't know much about metformin or B12 and said my blood sugar levels are fantastic and is amazed I have them under such good control after a blip earlier in the year. My weight loss is amazing (no appetite so that was easy) and so the upshot is I am too wonderful for her clinic so push off. I've been discharged! I asked about the metformin and she said it was up to me -I can stop taking it but with a risk of HbA1c rising, carry on taking it as the B12 injections should help or I can halve the dose and see what happens. She doesn't mind what I do. I feel a bit left in the lurch.
As for my diet it is very good. I don't have much of an appetite, probably due to the deficiency as the Byetta effects pretty much wore off. However we eat very nutritious food with either meat or fish every day, eggs every day and dairy products. I also eat a good variety of fruit and veg although these don't provide B12. I eat very little in the way of carbs other than those in the fruit and veg.  Dr Chandy thinks my diet  is not implicated in this and I may have been low for many years but metformin has pushed it lower. 3 years ago after complaining of aching and exhaustion it was tested and was 191 which although within the UK range is in a grey area where many get symptoms and it would be treated in many other countries but they just told me it was normal and I didn't question it. At the very least it should have been tested a year later but it wasn't.
So I would recommend that anyone with this problem gets clued up as much as possible, Dr Chandy has been a massive help to me along with the Pernicious anemia/B12 society. It seems that there are many many sufferers who have found it impossible to get satisfactory treatment with the NHS. Many doctors (including mine) do not follow NICE guidelines and so many like me are in massive amounts of pain, some have gone blind (my eyesight is affected). Anyway I have taken the route of self injecting according to the NICE guidelines. The endo was perfectly ok with this but I haven't told the GP's. At the moment I can't set foot through the door because I am so angry with them. Everything I have read says you can't overdose on this water soluble vitamin but it seems it could be a few months before I feel better and hopefully I caught the nerve damage in time.

Offline Pattidevans

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Re: metformin problems
« Reply #20 on: 17 September 2016, 02:04:15 PM »
I do hope you can reverse the damage Lizzie.  How much do the actual injections cost?  I am wondering what grounds the Dr has for denying them to you.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Liam

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Re: metformin problems
« Reply #21 on: 17 September 2016, 02:46:01 PM »
Well thanks to this thread I'm going to have to try and get the B12 results. I just assumed the GP would check my result against the guidelines and do whatever they told him to do. Seems that isn't the case always.

It is pretty sad even the Endo didn't know about this. It is pretty clear it isn't that uncommon, we are a pretty small forum and at least 2 members on Met seem to have a b12 issue. I know we can't be 100% sure it is the met but I think maybe like Statins the side effects are ignored, underplayed or just not known to GPs.

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HbA1c 3/10 10.2%, 7/10 8.1%, 12/10 7.5%.
2/11 7.8%, 8/11 8.6% 9/11 8.3%.
3/12 62 (7.8%). 10/12 67 (8.3%)
4/13 63 (7.9%) 6/13 59 (7.5%)
1/14 71 (8.6%) 7/14 59 (7.5%) 11/14 (6.7%)
3/15 56 (7.3%) 12/15 49 (6.6%)
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Offline Lizzie53

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Re: metformin problems
« Reply #22 on: 17 September 2016, 08:48:42 PM »
The injections are fairly cheap. I got 100 vials for around 65 euros I think from Germany and that included shipping and tax. You should always have the first one done by a medical professional  in case of  shock but I was lucky as the GP did grudgingly allow me to have 5 over a 2 week period which is the loading dose, well almost as the guidelines say 6. However I was told there are 5 in a box so surgeries prefer to do that!!! According to guidelines if you have neurological symptoms and I most definitely do, it should be done every other day until there are no further improvements and then every 2 months for life. My GP wont do that and from what I am told by these charities it is down to cost. Instead they packed me off to a rheumatologist who did a lot of blood tests and they were all normal including the one looking for inflammation apart from the B12 which the charities both say is severely low.

However she still wants to give me steroids for polymyalgia which she can't prove I have. You'd think they would give the cheapish B12 injections a go before trying to fill me with expensive and relatively dangerous drugs wouldn't you? I put that to the endo and she couldn't answer that one and went quiet.  Apparently I have good grounds to sue but I don't have the energy to do it and I really wouldn't want to put a doctor through it. They just aren't trained to deal with this and the NICE guidelines are apparently not good enough even if they do follow them.

You can have these B12 blood tests done privately and Dr Chandy strongly suggested that my kids got tested because it is often hereditary. My youngest has the same GP as me and we thought it would not be a good idea to go to her for it. So he has ordered the test from here https://www.medichecks.com/find-a-test/test/Vitamin-B12-(Active)_B12/.  Both my kids are young fit men though but he still said to get tested.   There is one thing that all of them seem to agree on though and that it is the metformin and omeprazole that is most likely the cause. In my case I may have been low even before metformin and it may be I inherited it from my mother and grandmother as they both had symptoms of it. However the metformin would have pushed it lower and led to the truly awful symptoms.

If any of you are concerned please get in touch with Dr Chandy at the B12d charity, he is an expert, recognized worldwide will give you his time free of charge and the charity will also send you the vials free too but if you can afford it you should make a donation and they use the donations to send the vials to anyone who can't afford them. The books I mentioned are good and he is mentioned in them. The pernicious anemia/B12 society were also very helpful and Martin Hooper who runs it has also written a book. Both websites are worth looking at and there are a couple of helpful Facebook groups - this is one,   Pernicious Anaemia/B12 Deficiency - Support Group.

It is early days for me. I'm told the terrible pain in my legs may take months to go. Today has been really bad. I tried to walk round Tesco but after about 4 minutes I had to give up. My hubby even drove me to the door so I wouldn't have to walk so far. I've had to give up all exercise and I really miss our dancing classes. Work is tricky I can do about 2 hours in an afternoon once or twice a week and I am exhausted by that. Dr Chandy has told me I must not overdo anything even if I feel a bit better as it halts recovery. B12 is further depleted by exercise and stress. I really hope none of you have this but if you think you have any of the symptoms listed on the charity web site get it treated any way you can asap.

Oh and Liam you may have a doctor who is knowledgeable about it but be careful because the guidelines in my area are anything over 180 is normal, however many get symptoms when they are higher than this and in some countries 200 is the cut off point and in Japan it is 500!!!! 3 years ago mine was 191 and I was told it was normal but I had many symptoms then - palpitations, aches and exhaustion. So three years of my life were wasted and somewhat ruined due to lack of knowledge. Now I am at the point where some of the symptoms may not be reversible or only partly reversed.

I should also mention that there are other blood tests that need to be done at the same time and you must not take any B12 supplements before you are tested as it skews the results. There is loads of info on the Facebook sites and the charity web pages.

Oh and Patti they were denied me during a 5 minute telephone consultation  after the blood test result said see GP. This particular GP who has only met me once decided that my extreme pain in my legs would not be caused by B12 deficiency, I would only be feeling a bit tired. So 5 doses would do the trick and he didn't really think I needed those and it would be unlikely I would need more. When I told the 2 charities this they were seething.

Offline Pattidevans

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Re: metformin problems
« Reply #23 on: 17 September 2016, 10:44:42 PM »
I am shocked rigid and scared by your post Lizzie, but you will have to excuse me as it is too late tonight and I am too exhausted to read/respond in detail, but I will.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Quantum Learning

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Re: metformin problems
« Reply #24 on: 17 September 2016, 11:11:40 PM »
This is absolutely awful, if we can't trust our doctors what are we supposed to do?

I've been taking Omeprazole for 21 years and Met for the last 4 but to my knowledge have never been tested for B12.

I have a blood test request already filled out for my next A1c at the end of the month and have just scribbled B12 on it too, hopefully it will work. I do take a multivit each day which has B12 in it which I will stop taking a couple of days before.

I wish you all the best for a return to good health and hope the injections work well. Maybe once you're feeling better you'll have the strength to pursue a complaint against your terrible treatment.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
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Oct 2013 39/5.7% Chol 5.9
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June 2017 51/6.8% Chol 6.1
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Offline Lizzie53

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Re: metformin problems
« Reply #25 on: 17 September 2016, 11:45:14 PM »
There are quite a lot of people organising campaigns regarding this in UK. You'll find them on Facebook pages and the charities I mentioned. . Also B12 awareness week starts on Monday. Also a couple of days off the supplements is not enough. I still have a lot to learn but if you hunt for information it will tell you. It is something to do with the B12 being in your blood but not able to get into cells. So the blood tests will show lots of it but it isn't being utilised.
At the moment I am just exhausted a lot of the time so it is taking me a while to understand it all and to accept that my GP's are just not prepared to help. Even the endo's side kick said that doctors in these kinds of charities get obsessed with their ideas. Well I had to bite my tongue because if I left it to the likes of him and my GP's I would be in a wheelchair before long and in fact I could have done with one today. Don't panic Patti because many people once diagnosed make a full recovery and you may be one of the lucky ones with a doctor who knows about it. Dr Chandy was confident I would start to feel a lot better but it is upsetting not really knowing how long it will take.  Today I took the decision to reduce my metformin by half down to 1000mg per day and I will be keeping a close eye on my blood sugar levels. I am a bit stressed that I have no one to help me keep an eye on all this and being dependent on charities to advise me.

Offline Pattidevans

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Re: metformin problems
« Reply #26 on: 18 September 2016, 01:03:08 PM »
Lizzie

Maybe the reason your legs are so painful at the moment is because the nerves are regenerating from the injections you have already had?  I know I had neuropathy in my feet and hands when I was first diagnosed and it only became really painful when the nerves were recovering after getting BGs down.
What exactly do the pains feel like?

I have been seeing a physio for ages now and she has told me that the pains I have suffered in my legs are muscular, not anything to do with my joints.  I put my back out getting into the car on Wednesday and it was very painful for a couple of days, then I woke up and the back pain had gone - or at least it had moved into the area of my hip joints. I said to the physio at one point that I feel as though all my bones are held together with perished elastic bands.  Push one out and I go wrong somewhere else.  I have slowed down walking a lot and I am also dragging my left foot a bit, which I think has caused two falls within the last couple of months.

I note my eyesight has changed a bit, in as much as I no longer see clearly through the distance part of my varifocals and can see better without them.   I'm tired, I can go to sleep, but I wake at silly hours and lay worrying about things.  I keep feeling close to tears and then I will suddenly swing the other way.  However I am under a great deal of stress at the moment and have put it down to that.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Lizzie53

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Re: metformin problems
« Reply #27 on: 18 September 2016, 02:11:53 PM »
I'm hoping this is the case and in fact have been reading a lot today and this is what they are saying. It seems so many parts of the body are affected by this deficiency that often you feel worse during the healing process while everything is firing up again. Yesterday I tried to get round Tesco and just couldn't manage and since then I have been feeling worse than ever. One thing Dr Chandy did tell me was to try not to overdo things during healing as stress and exercise depletes B12. I've noticed changes since my loading doses and now the self injections. My usually dry hair and skin is very greasy and I have lots of spots. I keep getting hot flushes. My appetite has returned a little and my very sore mouth and tongue is better. Apparently they say this is normal and the hot, greasy, spotty stuff will go before long. Hope so as I feel a mess.
The pain I have is mostly in legs from waist downwards and arms but also shoulders and neck. It is a bit like the pain you get after a lot of exercise but worse. I also get pins and needles and numbness and after trying to walk for 5 minutes or less my legs become increasingly numb and I have to sit down or fall over. I am unsteady on my feet and have had a few falls. Last weekend I fell down stone steps in the garden. Some days are better than others but the last 2 days have been awful.
My eyes have been affected, my variofocals don't seem as good now and this scares me, I have considerably more floaters along with some black dots which appeared last year but went after a month or two. Saw an eye specialist who said it all looked ok but maybe I should see a neurologist. GP said that wasn't necessary! I've given up arguing.
My hair has been falling out just at the front. I am also getting gall bladder pain and this is also mentioned in symptoms. I'm also having a few 'female' problems. Then there is difficulty swallowing and feel like I have a lump in my throat. My nails are dry and break and have ridges in them. Patches of skin all over me are dry flaking and sometimes bleeding. I also have palpitations that are scary and sometimes I am dizzy with them.
I have of course been to the doc numerous times but they don't like more than one problem at a time so they don't see the whole picture. I did give one of them my very long list and she just pushed it to one side.
So at the moment I really don't want to go to the surgery again and am considering changing but that could be out of the frying pan into the fire. The one good thing though is my diabetes is the best it has ever been. GP, nurse and endo are amazed at that. They say my HbA1c makes me a border line  patient - after 13 years of it!!

Offline Pattidevans

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Re: metformin problems
« Reply #28 on: 18 September 2016, 08:51:57 PM »
Thank you for the further info regarding your symptoms.  I'd be pleased to hear from other members if they are suffering the same symptoms.  Maybe we should publicise it more on here as a side effect of Metformin.

I think mine must be down to that, since I had no such problems in earlier life.  I've read up more and whilst I do not have all the suggested symptoms I certainly do have a fair few of them.
Patti


Type 1.  Mis-diagnosed T2 May 2003, finally had CPeptide test 15/7/11 and proper diagnosis 1/9/11.  Now pumping Apidra with Roche Spirit Combo pump. Hba1c 6.1 April 2016.


© 2015 Patti Evans

Offline Lizzie53

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Re: metformin problems
« Reply #29 on: 18 September 2016, 10:42:16 PM »
I think it affects people differently Patti. I don't have all the symptoms and thankfully don't feel I have depression. I have been reading as much as I can and it seems it can take four months or more to feel better with the correct treatment. That distresses me a bit. I'm perfectly ok injecting myself with Byetta but this B12 stuff is something else - more of it, longer needle and more painful, so the thought of doing it every other day for months  isn't nice. I've done 4 now and it is such a relief to think I don't have to do it the next day! I'm injecting sub cut which is supposed to be OK but some do it into the muscle which may be better and that is how the nurse did my loading ones but I just can't do it! If the nurse could teach my husband how to do it he would, but of course as I have to do this without their knowledge, I can't ask.
I have read that the doctors tend to follow the guidelines issued by the hematology departments in each area. It seems in my area they are out of date, I was told that in a support group meeting and now I am reading it on line. So my GP's are actually being told what to do and they follow that. It is actually printed on the blood test print out. It has been suggested that I write to my MP about it. Others in my area have done this but feel he didn't really take it seriously. At the moment I don't have the energy to put my mind to it and I need to have my facts right but maybe I will do it when I can. I hope you have more luck in getting the treatment that works for you Patti. I would be very interested in hearing how you get on.