Author Topic: metformin problems  (Read 2092 times)

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Offline Liam

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Re: metformin problems
« Reply #45 on: 23 September 2016, 05:24:26 PM »
You know I always thought met was pretty safe and diarrhea was about the only common side effect. Now B12 problems seem to be cropping up. I mean we are a fairly small group and a good few have the problem. I really need to get my result, going by this thread I might be low but my GP has marked it 'okay'. 
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 Lizzie53

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Re: metformin problems
« Reply #46 on: 23 September 2016, 06:18:07 PM »
Liam there are so many people on support forums and on charity websites whose doctors have either said levels are normal despite their symptoms or they have said they are low but then failed to follow NICE guidelines or BCSH guidelines. My GP didn't even know there were any despite my husband holding them in his hand. She refused to look at them! This week is B12 awareness week and it seems that it is  so common and not being treated properly in the majority of cases. You do need to get your blood test printed out. If it is under 180 that will be considered low in UK. However in Japan they consider it low under 500. Other countries it is 200. Dr Chandy who is one of the most knowledgeable doctors of this condition in UK told me that between 200-300 is a grey area and many have symptoms then. Google BCSH Cobalamin and folate guidelines also B12d registered charity for full information. Also B12 deficiency NICE guidelines.  I was getting symptoms 3 years ago but my level was 191 and GP told me that was normal. If I'd had the treatment then I may well have been saved the possibly irreversible symptoms I have now.

Offline JillT

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Re: metformin problems
« Reply #47 on: 24 September 2016, 02:16:01 AM »
Another thing worth looking into is your MTHFR status. If you have this mutation (and just under 50% of us do), then you can have problem processing folate and it can also affect B12. There are other genetic mutations that can affect B12 absorption as well. If you add metformin on top of those, it could potentially cause all sorts of issues.

Anyone who has this mutation do much better taking (more expensive admittedly) methylated versions of the B12 and folate, namely methylcobalamin and L-5-Methyltetrahydrofolate.

I'm paying more attention to this now that I've received my genome results and discovered I have one of the MTHFR mutations.

A quote from Dr Rhonda Patrick's nutrigenomics paper:

"Folate and MTHFR:
Folate (vitamin B9) serves two very important functions: 1). It serves as a precursor to make the DNA nucleotide thymine, which means it is essential to many new cells in the body, whether we are talking about the gut or the brain. 2). It serves as a precursor to make methyl groups, which are molecules that play a very important role in epigenetics. These methyl groups also play a very important role in converting homocysteine back into the amino acid methionine, which requires vitamin B12 as a cofactor.

There are a cluster of polymorphisms in the folate metabolism pathway. These specific polymorphisms are in the gene 5,10methylenetetrahydrofolate reductase, known as MTHFR , which converts 5,10methylenetetrahydrofolate into 5methylfolate and uses riboflavin as a cofactor. 5methylfolate is needed to make those methyl molecules that regulate epigenetics and to convert homocysteine into methionine. This means that while people with MTHFR polymorphisms can make new DNA from dietary folate (or supplemental folic acid), they do not efficiently produce methyl groups and subsequently can have higher than normal homocysteine levels. High homocysteine is associated with a host of vascular diseases including coronary artery disease, stroke, and dementia. While this cluster of polymorphisms effects a pretty large number of people, studies have shown that supplementing with L5MTHF (also known as 5methylfolate), methylcobalamin (vitamin B12), and riboflavin are able to circumvent these shortcomings, and bring down homocysteine in these populations. For example, individuals homozygous for MTHFR (rs1801133 (T;T)) that supplemented with 480 micrograms of Lmethyltetrahydrofolate for 4 weeks lowered their homocysteine levels by 15%.

The following are the cluster of polymorphisms and their corresponding loss of function:
● rs1801133 (C;T or T;C) ~40% of the population are heterozygous for one polymorphism which results in a 40% decrease in functional efficiency of MTHFR.
● rs1801133 (C;T or T;C) and rs1801131 (A;C or or C;A or C;C) ~20% of the population has two separate polymorphisms in the MTHFR gene which results in a 70% decrease in functional efficiency of MTHFR.
● rs1801133 (T;T) ~10% are homozygous for one polymorphism which results in 80-90% reduced functional efficiency of MTHFR.”


Another mutation discussed in the same paper:

"Vitamin B12 and FUT2
There are very common variations in the FUT2 gene that either decrease or increase vitamin B12 absorption. In those cases where poor vitamin B12 absorption occurs, sublingual vitamin B12 has been shown to bypass the malabsorption issue."

I'm Not Dead Yet
66yo Female, Western Australia
T2 DX'd 7/3/12 - GTT: Fasting 6.4 - 1 hr 14.2 - 2 hrs 12.9
BMI 7/3/12 = 30.4 –> 24.3 (20.18% weight loss)
HbA1c - 12/3/12: 6.2% - 25/1/16: 5.2% - 33
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Offline Ziggy

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Re: metformin problems
« Reply #48 on: 24 September 2016, 08:37:00 AM »
You need to get print outs of your blood tests Ziggy and ask about those injections. Then you can ask those charities for advice.

I have left the previous practice Lizzie, maybe I can still ask them for the blood test results. Thanks for the advice,


 8)   8)   8)
ZigSig:-
T2 Since 22-May-2008 - HbA1c Dec 2015 - 38 or 5.6.  Chol - 5.8
 

Ramapril 10mg, Omeprazole 20mg
Exercise - am running on a fairly regular basis - knees don't fail me now :)  and Diet (am a lacto ova vegetarian and am trying to stay low GI/GL)     Still on the Road To Find Out

Offline Lizzie53

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Re: metformin problems
« Reply #49 on: 24 September 2016, 11:40:52 AM »
Ziggy I would think your new practice should have all your medical records. If you can remember a rough date they were done the receptionist should be able to find it and print it out for you. Once you have started supplements such as injections or tablets I am told it isn't helpful to have further blood tests for B12 as it will not give a reliable result. I am told you need about 3 or 4 months without them. There is so much to learn about this, I am taking it one step at a time and read a little every day. After talking to Dr Chandy at least I feel I have halted any further damage by injecting myself every other day. I'm just hoping the nerve damage can be reversed.

Offline Lucy

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Re: metformin problems
« Reply #50 on: 24 September 2016, 02:08:52 PM »
I'm not sure whether to ask for the b12 test or not as I do have an appointment on Monday. I'm often low on energy and have an incredibly appalling memory but those are both nothing new really. I have been on metformin for 8 years though. However I was taking a b12 dissolvable supplement for a while just in case though I ran out of them a week or so ago. Would be interested to know if my levels are good enough but not really sure I have enough symptoms to indicate a problem or warrant the test.
Type: Lucy. A1C 44 / 6.0% Jan17.
Lantus, Victoza and Apidra. Metformin XR, Bisoprolol (for SVT). Dexcom G4 with xdrip and nightscout.

Offline Lizzie53

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Re: metformin problems
« Reply #51 on: 24 September 2016, 04:13:53 PM »
Lucy you can buy a test on line but really you need a batch of tests that go along with B12 such as vitamin D, potassium and intrinsic factor , there are probably others. If you have been taking any B12 supplements within about 4 months of a test it will skew the results and they will come out high when in fact the important part of B12 (can't remember the name of it) that gets to the cells won't be shown. Go to some of the links I posted as they will help you understand it. The Facebook support groups have some very easily understood information regarding this.

Offline Lucy

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Re: metformin problems
« Reply #52 on: 24 September 2016, 04:30:21 PM »
Ah, probably not much point asking for a test then. Something to read up on to bear in mind for future though.
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 #53 on: 26 September 2016, 07:13:14 PM »
I asked for Folate and Ferretin tests today and I am to have them on Friday.
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 #54 on: 26 September 2016, 10:53:44 PM »
Good luck Patti. Did you get a vitamin D one too? Have they also tested intrinsic factor? Although it seems a negative result is unreliable. Also when you get your injections you need to keep your potassium levels up with food. My doctor and nurse were not aware of this but I was told at a support group I go to and it is also mentioned on several of the web sites. I've been scoffing bananas, sweet potatoes,  asparagus, apricots, white beans and sprouts.
   

Offline Pattidevans

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Re: metformin problems
« Reply #55 on: 26 September 2016, 11:41:15 PM »
No I did not get Vit D, but for several years we both have been taking 5000iu gel caps daily, except when we are on a holiday in the sun.  I very much doubt we are deficient as that is a high dose.

Yes they tested intrinsic value and it seems OK.  Must ask.

Cannot eat bananas at all for BG reasons.  We regularly eat sweet potatoes and lots of asparagus.  Fresh apricots in season, have had some good ones this year and beans and sprouts.  We eat a very varied diet with lots of fruit and veg.  At least 3 - 4 large portions of veg per day, varied more than most believe me!  Lots of our friends (inc the vegetarians) haven't heard of half the stuff we eat + a large fruit platter most days.

TBH I am sort of surprised, but yesterday I did a manicure, for weeks I have had red polish all over my fingers as have had shaky hands.  Yesterday my hands were steady and the nail varnish went on the nails only!
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 #56 on: 27 September 2016, 09:33:25 AM »
Apparently they are meant to test for vitamin D at the same time as B12 as they often go together despite good diet, sun etc. Mine failed to do it so I just don't know and don't feel like returning to them at the moment but I have spent 6 weeks in the sun recently and I eat the right kinds of things.  My intrinsic factor test was negative but I have been told that a high percentage of the tests stating negative are actually inaccurate.
Good news about the posh nails, mine are so broken and split at the moment. I'm hoping they improve as I get better.
This morning I am about to answer some questions from a doctor at Oxford who is researching into the treatment and diagnosis of B12 deficiency. I may be able to meet with her in the future. I'm told she is trying to educate GP's in the matter.

Offline Pattidevans

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Re: metformin problems
« Reply #57 on: 27 September 2016, 08:00:24 PM »
Hi Lizzie
Quote
Apparently they are meant to test for vitamin D at the same time as B12 as they often go together despite good diet, sun etc. Mine failed to do it so I just don't know and don't feel like returning to them at the moment but I have spent 6 weeks in the sun recently and I eat the right kinds of things.  My intrinsic factor test was negative but I have been told that a high percentage of the tests stating negative are actually inaccurate.

There have been long discussions on VitD and it's lack on the forum in the past.  Sedge and her hubby are naturists and spend long holidays in the sun and they were both deficient.  Which is why hubby and I take the high dose VitD - we get this one by Healthy Origins 
It is a high dose and you must get the gel caps and not any kind of tablets. 

I am convinced that it has been the Metformin which has caused the B12 deficiency and I ditched it over a month ago.  I had another injection yesterday and I have felt much more energetic today.  I got a lift into town from Hubby, but only because we were going via a friend's house to pick up some boxes for packing to move house and he dropped the pair of us in town cos it was tipping down.  The sun came out by the time we left our lunch venue and honestly I walked right up the main street (where I had previously been dragging my feet) and then we had a cuppa in the park and I walked home which is all uphill with quite a spring in my step.

Nails:  I am not a huge taker of supplements, the D3 and the only other I take is Silica
which was recommended by my hairdresser - it hasn't helped my poor hair, but my nails have become very strong.  I also use Nail Magic which I used to buy in the US when I was airline crew but couldn't obtain in the UK until a few years ago I found it online.  It is the only nail strengthener I have ever used which does not undermine the integrity of your nails by making them flaky 3 months down the line.  Maybe pretty nails aren't the most important thing in life, but to me they are perhaps the one element I retain from my much more glamorous younger self, so it's part of my self-esteem, sad though that might be!

I will be interested in your talks with the doctor from Oxford.
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 #58 on: 27 September 2016, 11:27:58 PM »
Oh I like pretty nails and really miss my talons. They just break off now.
I've already answered 3 questions from the research doctor. It seems she is researching into why it is so difficult to get a diagnosis and correct treatment. I'm hoping a group of us will meet her soon.
I'm so glad you have noticed a difference. I had a little improvement during the 5 loading doses but then crashed with a bang a couple of weeks after. There is no way I would have lasted the 6 months until they said they would review it and with neurological symptoms according to NICE guidelines I shouldn't have to. So anyway I've had 9 self injections now every other day. I'm still in a lot of pain and I can't walk far. A trip around Tesco yesterday which I aborted after I had half of my list completely floored me and I have spent today getting over it. My mouth is no longer sore so that is an improvement and I have managed to sleep for a couple of nights without waking in pain so that is an improvement too. I have been told that it could be 4 months of these every other day jabs before I feel much improvement.

Offline Pattidevans

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Re: metformin problems
« Reply #59 on: 28 September 2016, 02:02:08 PM »
I'm sorry it's not working for you yet and hope you see an improvement soon.

I have never been denied any reasonable request by my GP or the nurse at the surgery.  Thank goodness.

I was refused a VitD test but that was at an Endo's clinic where the registrar refused.  Fortunately that particular "Head of Department",who was very staid and old fashioned retired shortly after and the two consultants who are there now are wonderful.  The chocolate teapot of a DSN at the local D clinic couldn't stand the new regime and left also.  The new DSNs I see are great.
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