Author Topic: metformin problems  (Read 2092 times)

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Offline Pattidevans

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Re: metformin problems
« Reply #30 on: 18 September 2016, 11:08:09 PM »
Lizzie

I will let you know what my nurse says on Thursday when I start the injections and should have the results of the pernicious anaemia tests.  However, I have so much else on my plate at the moment that I can barely contemplate a battle.  It will take a few months to get other things behind me before I can even pay it the attention it patently deserves.
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 #31 on: 19 September 2016, 08:40:43 AM »
Good luck, you have your diagnosis and are about to start the treatment so that is positive. Hope you feel better soon.
Hugs

Offline Ziggy

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Re: metformin problems
« Reply #32 on: 19 September 2016, 10:16:31 AM »
Reading this with trepidation, you may remember my last botched HbA1c test did return some results - one being that my (previous) GP said I had pernicious anemia and was scheduling me for 3 injections per week - which hasn't happened.

Must take a look at this page http://pernicious-anaemia-society.org/


 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 #33 on: 19 September 2016, 10:32:02 AM »
I phoned this society Ziggy and they were very helpful, then I joined on an annual membership. My blood test for intrinsic factor was negative so GP says I don't have pernicious anemia (I hope they are right on that) however a doctor at another charity and someone at this society said that particular blood test is very unreliable and with my symptoms and low B12 I cannot assume it is correct. You need to get print outs of your blood tests Ziggy and ask about those injections. Then you can ask those charities for advice.

Offline Liam

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Re: metformin problems
« Reply #34 on: 19 September 2016, 12:28:10 PM »
I hope you don't mind Lizzie. I edited one of your posts to make it a bit more readable. Interesting how many of us are effected by this issue and none of our doctors seem to know very much about it. I wonder how many millions are spent on painkillers and the likes and people living in pain when a simple b12 injection or 10 would sort it out. Scary stuff.
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 #35 on: 19 September 2016, 01:02:26 PM »
At first I was so mad about my GP's and I still am a bit. However each health authority has it's own guidelines on treatment and where I live I am told it is out of date and incorrect by the charities. What happens is the lab reports on the blood test and tells the doctor how to treat it. So with mine it was 5 loading doses and test again in 6 months. This didn't take account of my symptoms which are mostly neurological ones. The GP's have refused to believe my symptoms are neurological but the 2 charities have said they most definitely are.

So if the GP decided that I have neurological symptoms, the guidelines are injections every other day until no further improvement. In addition the test for intrinsic factor was negative however that test is very unreliable and it even states that on the print out. Also there is no evidence in other blood tests that my red blood cells are abnormal in shape and size. So the drs are saying this is even more evidence that I do not have much of a problem. They totally ignore the fact that I can hardly walk and am in agony. One said modern life can make you feel like that! I can't believe modern life (and mine is relaxed) could put me in a wheelchair, because I am close to needing one now.

All the books and articles I have read state that symptoms can often begin before there are changes to the blood cells and early treatment MUST begin as soon as possible based on symptoms to prevent the nerve damage from being irreversible. So this is why I took the decision to inject myself, I am terrified I will have to spend the rest of my life in a wheelchair.

I am told that there is no possibility of overdosing on this vitamin and that is all it is - not some toxic drug.

So as it stands I've had 5 loading doses from my GP and there was a small improvement in some symptoms but then I had several weeks with nothing apart from sublingual pills every day which wont help any one with a deficiency much but I was worried and desperate. During that time any improvement went. I have now given myself 4 injections. One every other day, the last one being yesterday. I've had this pain since April and have not been able to sleep through the night at all and everyday I take co codamol which maybe takes the edge off the pain.

So last night was the first night I slept through the night without waking in pain. Every night since April I have had to get up, go to another room, sit in a chair and try to sleep again. I have pain right now and took pain killers this morning but I don't feel quite so exhausted.

I am told it could take months before I feel normal again but just staying asleep all night was a step forward for me.

If there is anyone who contemplates self injecting like me I can't stress enough that the first one at least MUST be done by a health professional. Also I strongly suggest you should contact one of the charities for advice. You need to have print outs of all your blood tests so you can tell them all the results.

As I mentioned before it is an awareness week for this problem.

I hope my information helps anyone else with this difficulty. This morning I found a template for a letter that I could send to my GP. I'm going to spend a few days tinkering with it to fit my experiences.
Oh and Liam it is fine to edit my posts. When I wrote most of them I was tired and suffering from Brain Fog.  I am a little more alert today so that is progress too.

Offline Liam

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Re: metformin problems
« Reply #36 on: 19 September 2016, 02:52:34 PM »
I think you sound very sensible in your advice to the forum on this matter. I know GPs must get people coming in all the time with self diagnosis from 'Internet experts', but they should still listen and then decide. I get the feeling they are trying to blame your pains on 'depression' or the like with their 'modern life' line.

Glad to hear you are okay with my edit. The only thing I did was add some spaces in the big load of text to make it a bit easier for people to read. I had thought maybe you were on a mobile device that made formatting hard.
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 #37 on: 20 September 2016, 06:41:47 PM »
I had some progress today. First of all I managed to go to work and really enjoyed it. Totally shattered now though. Then I had a phone call from the rheumatologist I saw 2 weeks ago. She dismissed the idea of B12 deficiency being a problem then. However now she has had all of my blood tests results back and none of them apart from the B12 being abnormal she is coming round to the idea and isn't unhappy with my decision to self inject. She says there were some problem areas on the xrays of my hips and shoulders and now she wants an electric shock test on my nerves because then that would give more of an indication that my nerves have been damaged. So I am feeling more positive now. I am longing to say to my GP 'Told you so'! ;-) I also had an email from a support group who have arranged a meeting with a doctor who is researching B12 deficiency and would like to meet some of us. I will be there like a shot.

Offline Alan

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Re: metformin problems
« Reply #38 on: 20 September 2016, 11:24:21 PM »
Thank you for the detailed reports Lizzie; I hope things improve quickly.

No comments, just learning a lot from you.
Cheers, Alan, T2, Australia.
--
Everything in Moderation - Except Laughter.
There is nothing I could eat I like more than my eyes.
Type 2 Diabetes - A Personal Journey (latest: Small New York Baked Low Carb Cheesecake)
Born Under a Wandering Star (Latest:Dambulla, Sigiriya and Polonuwarra, Sri Lanka)

Offline Lizzie53

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Re: metformin problems
« Reply #39 on: 21 September 2016, 09:43:49 AM »
Thanks Alan. It is a steep learning curve but I am determined to do all I can to be well again.

Offline pms543

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Re: metformin problems
« Reply #40 on: 21 September 2016, 10:37:44 AM »
O lizzie, thank you so much for posting your very detailed symptoms!

I can identify with every one you mention and in fact, am being trated right now for GCA and Polymyalgia! I am diagnosed as having Pernicious Anaemia and also Merlagia Paresthetica!!
And to think all this could be related to the B12 deficiency...which, was diagnosed by the dentist who suspected I had oral lichen planus...and sent me for a biopsy...

I am going to read up on the links and altho I spoke initially to the PA society who advised me to get the Boost spray, I am now allowed by GP to have an injection bi monthly but no more frequently!! I will make an appointment with my GP as they are very much like yours and I have to fight for everything right now...
Poppet x

I have Coeliac disease.

Diagnosed Type 2 16/08/2010

OCT 2013 2 X 500g Glucosaphage

Current slow release Metformin 2000g

Victoza 1.2 daily

36 Units Insultard

30mg Prednisalone

2 x 500mg Calcichew D3 Forte

30mg Amitriptyline


16/11/2010 1st HbA1c 8.5, HDL 1.1, LDL 2.7, Trigs 1.6 
17/02/2015 HbA1c 108mmol, HDL 1.5, LDL 4.3, Trigs 2.7 Total Chol 4.7

25/04/2017 HbA1c  84mmol,Chol 7.7

Offline Lizzie53

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Re: metformin problems
« Reply #41 on: 21 September 2016, 01:25:08 PM »
So sorry to hear you have this problem too pms543. I'm not experienced or qualified to comment on your treatment but I know that what the GP offered me was not anywhere near enough. All the links I posted are good and those books have helped me understand what is happening. With the lack of support from our doctors it is even more important to educate ourselves. If you get the chance to speak on the phone with Dr Chandy at the B12d charity, do grab it because he was really helpful and understanding.
Yesterday I felt well enough to work, I am a supply teacher and haven't really been well enough to work since May. I managed it which is a step forward but today I am totally exhausted and am having a 'duvet day'. Please keep in touch and let us know how you are getting on. If you use Facebook there are a couple of good support groups and I have found them helpful.

Offline Pattidevans

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Re: metformin problems
« Reply #42 on: 21 September 2016, 02:13:56 PM »
Good luck confronting your GP Pms.
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 pms543

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Re: metformin problems
« Reply #43 on: 21 September 2016, 02:29:39 PM »
Thanks Lizzie and Patti

Am due a blood test end of month for levels of esr and crp as now on tapering dose of the prednisalone ( the last blood test showed a slight increase but go said its ok ) I kno the charity would disagree as well as folk on the Pms forum but am waiting til end of month

My neurological symptoms included pins n needles in hands and toes as well as intermittent tintinitous but they are still there even tho am taking a daily  4 sprays of boost

I will must up the energy soon to get in touch with dr chondrites but like you, right now they are depleted

I am in one FB group for PA
Poppet x

I have Coeliac disease.

Diagnosed Type 2 16/08/2010

OCT 2013 2 X 500g Glucosaphage

Current slow release Metformin 2000g

Victoza 1.2 daily

36 Units Insultard

30mg Prednisalone

2 x 500mg Calcichew D3 Forte

30mg Amitriptyline


16/11/2010 1st HbA1c 8.5, HDL 1.1, LDL 2.7, Trigs 1.6 
17/02/2015 HbA1c 108mmol, HDL 1.5, LDL 4.3, Trigs 2.7 Total Chol 4.7

25/04/2017 HbA1c  84mmol,Chol 7.7

Offline Pattidevans

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  • It's ONLY Diabetes. It could be something worse!
Re: metformin problems
« Reply #44 on: 23 September 2016, 05:16:57 PM »
Lizzie

I started a new thread in "General Discussion" about my diagnosis and treatment - in case you are interested.
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