Author Topic: metformin problems  (Read 2096 times)

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Offline Lizzie53

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metformin problems
« on: 14 September 2016, 06:20:21 PM »
Has anyone else taking metformin been diagnosed with low vitamin B12 levels?

Offline Pattidevans

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Re: metformin problems
« Reply #1 on: 14 September 2016, 06:53:08 PM »
Yes I know several.  I have just had the tests and awaiting the results. 
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 #2 on: 14 September 2016, 07:00:40 PM »
I've heard of it myself and like Patti was tested for it (2 blood lettings ago) I believe it effects absorption of B12 so either you have to stop the Metformin or get b12 injections.
DX Type I 1994.    Novorapid Animas Vibe pump
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%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Moby

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Re: metformin problems
« Reply #3 on: 14 September 2016, 09:01:38 PM »
Yup ,me.

B12 injections, amazingly my doctor didn't know of the connection.!
bw
Moby

T2 since 2002.
metformin 2000mg. humalin I and humalog
Xpert graduate & Xpert Insulin Graduate. (for what it's worth)


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Offline Lizzie53

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Re: metformin problems
« Reply #4 on: 14 September 2016, 10:14:25 PM »
well it seems I have it (or don't have much of it) too. Have been really unwell and it has affected the nerves in my legs as well as many more bits of me and now I can hardly walk. :-(
My GP has just been dreadful and begrudgingly gave me the 5 loading shots but now says no more for 6 months. I contacted 2 charities which have been wonderful and they say my level is severe and the NICE guidelines say I should have a shot every other day until there is no further improvement. The doctor at one of the charities who spoke to me on the phone for a hour said it was essential I get these jabs so they have sent me them so I can do it myself. Apparently most GP's have no idea about this deficiency or just how serious it can be. When I asked about past blood tests it seems that it was low 3 years ago but no one told me. Just said it was satisfactory. So it has been low and getting worse over the last 3 years at least. Now I know why I struggled with no energy so much.
Anyway I have an appointment at the hozzie diabetic clinic tomorrow and I hope they have more knowledge about it and can advise me what to do about the metformin.
I have now read 3 books about it and have spoken at length with a doctor who has spent all his working life researching it so if anyone needs links let me know. Patti I'm sure you don't need me to tell you to get print outs of your results. I wasn't told mine was low 3 years ago and the GP played down my much lower reading a few weeks ago. A common problem I am told.

Offline Pattidevans

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Re: metformin problems
« Reply #5 on: 14 September 2016, 10:36:02 PM »
Oh please don't speak to me about "normal" levels and results.  Not about this issue but about others that have now disrupted our lives in a major way.  Sorry, this is bitter and horrible and I will not insert it into this thread.  All I will say is please ask for exact numbers on test results and research them.  Do not rely on the GP saying "normal".

I am well aware of the probs of lack of B12 and will be talking about it with my nurse next week.  Meantime I ditched met and frankly suspect I was suffering lactic acidosis before I did!
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 #6 on: 14 September 2016, 10:50:00 PM »
yes I have learned the hard way due to this! It has affected me all over - agonizing pain, eye sight problems, skin problems, energy levels, gall bladder pain, palpitations and tons more. When I have tried to ask the doctors about more than one symptom they have been tetchy with me and so have never seen the big picture. I've been fobbed off for months and probably years with stronger and stronger pain killers. One doc wanted to give me steroids with no evidence of polymyalgia at all. I am so very angry about this and now a latest batch of blood tests looking for lupus, muscular dystrophy and a few other ailments have gone missing. The receptionist wanted me to see the GP about it and I burst into tears, there is no way I am going near that woman again. She was horrid to me last visit. My hubby took me to her as I was in such a state. She folded her arms and said I have had 5 injections, that was enough and lots of people have to live with pain like mine. Thankfully the doc at the B12d charity has been so kind and helpful to me, he has seen all my blood tests and list of symptoms and actually listened to me. Nice to be able to have a rant somewhere - so thank you. I will be seeing the endo, who is a new one, tomorrow and I have my file of information to take with me.

Offline Liam

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Re: metformin problems
« Reply #7 on: 14 September 2016, 10:56:56 PM »
I'm so angry on your behalf. Okay so GPs can't be experts on every drug and side effect, but then to be rude and unhelpful? Glad to hear you are getting help from the charities but you really shouldn't have to.
DX Type I 1994.    Novorapid Animas Vibe pump
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%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Lucy

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Re: metformin problems
« Reply #8 on: 14 September 2016, 11:37:30 PM »
what made you all be tested for it? I have wondered if i may have it but dont think i'm ever tested for it.
Type: Lucy. A1C 44 / 6.0% Jan17.
Lantus, Victoza and Apidra. Metformin XR, Bisoprolol (for SVT). Dexcom G4 with xdrip and nightscout.

Offline Pattidevans

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Re: metformin problems
« Reply #9 on: 15 September 2016, 10:22:09 AM »
I did have tests some years ago because of symptoms I was having, but it was before I was on Metformin and the tests came back normal (no, I didn't ask then what the number was).  I discovered through this forum that the brain fog which I had gone to the GP about was a side effect of statins and I took myself off them.


I asked for the test to be done along with my normal diabetic stuff last week, prompted by Heather's original post in another thread, which rang some alarm bells with the way I was feeling.  However I ditched the Metformin around 10 August.  My BGs are raised since then and I cannot bestir myself to do basal tests as there are too many other things on my mind right now.  I just keep lobbing in corrections.


Frankly I am horrified at the attitude of Heather's GP.  I am so grateful that my GP is so fantastic.  There is one GP at the surgery that I dislike and he's the so called Diabetes-specialist.  I won't see him.
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 #10 on: 15 September 2016, 12:04:37 PM »
I've been feeling tired and just lacking energy. To be totally honest, I did have to point out about the met / B vit issue to the GP but they were happy to test for it.
DX Type I 1994.    Novorapid Animas Vibe pump
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%)
Ramipril: 10mg Quetiapine: 550mg Metformin: 2000mg

Offline Pattidevans

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Re: metformin problems
« Reply #11 on: 15 September 2016, 12:58:46 PM »
I had a letter from the surgery this morning.   Apparently they were trying to phone me all day on Tuesday.  We had gone to Mevagissey to have lunch with Paulines7 and her husband.  The upshot is they want me back for another blood test (not sure what it is, but I am going to have it done at 3.50 this afternoon and will let you know) and I will be starting on B12 injections when I see the nurse next week.  My B12 was 139.. not sure how bad that is, I think "normal" starts at 180?

Lizzie do you have links for those two charities please?   I need to research this.
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 Pattidevans

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Re: metformin problems
« Reply #12 on: 15 September 2016, 04:52:39 PM »
Aha... so the test I just had done this afternoon is to determine whether I have pernicious anaemia which is an autoimmune disease.  Since I already have 2 autoimmune diseases it's possible, but I bet it's just Metformin.  The nurse suggested it might be due to bad diet.  I said that I didn't think so, because my diet is actually very very good, with meals cooked from scratch which include plenty of meat, fish, dairy and fresh vegetables.

The  different types of B12 deficiency are very well described on this page http://www.nhs.uk/Conditions/Anaemia-vitamin-B12-and-folate-deficiency/Pages/Causes.aspx

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 #13 on: 15 September 2016, 05:08:24 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. They say NORMAL does start at 180 but this is disputed by many who say 200- 300ish is a grey area where many get symptoms and under 200 is severe. I have felt symptomatic for a few years and in 2013 it was 191 but was told it was normal and I didn't know to question it. At the very least it should have been tested before now. I have done so much research now and have read 3 very good books, belong to the society and have attended a support group meeting. So after the 5 loading doses where I had a little improvement, I then had a month with nothing and all my symptoms came back with a bang. I have only started injecting this week and they say it could be months before I feel ok again and will need the jabs for the rest of my life.  I have completely lost all faith in the GPs I've seen at my surgery. They just don't know anything about this deficiency and refused to look at my list of symptoms or the NICE guidelines I printed off for them. Today I saw the endo at the hozzie who is happy enough for me to self inject with B12 but puts my symptoms down to a modern busy lifestyle. She says I can remain on metformin but can reduce the dose if I wish. With that she said my diabetic control was excellent and I am too good for her clinic!!! So push off!! I'll just find all the links I have and post them. I hope you have an enlightened GP otherwise you are on your own it seems and it is a very steep learning curve. The very lovely Dr Chandy at the B12d charity called me and we spoke for an hour on the phone.