Author Topic: Don't know where to turn!  (Read 1304 times)

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Offline Pattidevans

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Don't know where to turn!
« on: 20 January 2017, 04:46:40 PM »
Hi all

As some may recall, I was diagnosed with B12 deficiency back in late September.  I gave up taking Metformin temporarily mid September because I was having a flare up of diverticulitis and I thought it might be exacerbated by the Metformin, even though it was the SR variety.  I decided to give it up altogether when I had the B12 deficiency diagnosis as it can block absorption of the B12.  Anyway, I had the 6 injections of B12 and I felt soooo much better.  I was no longer dragging my feet when I walked (that had caused some falls as I would trip over the least small obstacle, such as a paving slab raised by barely an inch more than it's neighbour), I was not suffering insomnia, even though I was stressed out at that time I was sleeping like a baby.  I no longer had leg pains.  Anyhow, time wore on and about the end of the first week in December symptoms of B12 deficiency started returning, night cramps, insomnia etc.  I got another injection on 5 Jan and things improved - a bit - but I didn't feel anything like as well as when I'd had the 6 injections. 

In addition to all that, I started piling weight on... by Xmas I had gained 4 lbs and even though I was quite controlled over Xmas - no chocolate, one small helping of pud and really have been eating my normal diet, but  gained 2lbs and since I've gained another 3 lbs - so a total of 9lbs.  Simply (I think) because I have my appetite back and I am eating a full plate of dinner instead of eating about 1/3rd of the plate and losing interest.  Plus, I've had to increase my insulin doses... I am putting the same amount into my pump which used to last 6+ days and now it's barely lasting 5.  I have had to raise basals a fair bit and also ratios, but I am still having FBGs in the 8/9 region and sometimes over 10. So that's all contributing. 

This week I spoke to the GP who said "maybe get a blood test at 10 weeks", but from what I read the blood test is skewed if you've had B12 supplements in the last 4 months.  I asked about the Metformin issue and she said she'd get the nurse to speak to me about it.  The nurse phoned me (she's far more clued up than most surgery nurses) and said Met didn't always block B12 absorption in everyone and it could be caused by my own system, so go back on the met but ramp up slowly.  That's fine, I am now having to reduce basals from about 11pm after 2 hypos 2 nights running at 1.30 am.  Just don't know where to turn with ratios/basals.  Anyone got any ideas?

Hmmm as I type this it has occurred to me that perhaps I should ask to see the DSN at the clinic.  Basically I think I just needed a bit of a rant... I am so p*ssed off at the weight gain as I am heavier than I have ever been in my life and it's so blooming hard to lose it.  All the same, if anyone has any insights I'd be grateful.
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 sedge

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Re: Don't know where to turn!
« Reply #1 on: 20 January 2017, 06:31:09 PM »
No insights Patti - but yes - at LEAST the DSN, if not the  Consultant.  It's a big issue - and you need EXPERT advice, mate.
Jenny

T1 DX 1972, pumping Novorapid 24/05/11

HbA1c - 7/07 8.7, 1/08 7.8, 9/08 8.4, 3/09 7.3, 7/09 7.2, 12/09 7.3, 11/10 8.1, 2/11 8.6, 9/11 6.5 2/12 6.4  5/12 50/6.7  11/12 52/6.9  01/13 46/6.4  06/16 46/6.4  12/16 45/6.4

Offline Quantum Learning

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Re: Don't know where to turn!
« Reply #2 on: 20 January 2017, 08:04:37 PM »
Sorry can't help with the ratios/basals but regarding the B12 from what Lizzie53 said and what the intensive research we've been doing online unearthed is that the NHS routinely under treat and won't (usually) listen. There is lots of anecdotal evidence online and they can't all be fantasists. OH is self injecting 5mg every 3 days and his NHS injections start next week. We're only expecting them to be 1mg (hope I'm proved wrong on that one) but they're only doing 1 a week for 4 weeks and then once a month for 4 months (I think). If you speak to Dr Chandry on the B12 charity website, he's disgusted with how the NHS is under treating.
Type 2 dx Nov 2012 with fasting BG 14%/129.5
HbA1c Jan 2013 79/9.3%
April 2013 50/6.7%
July 2013 39/5.7%
Oct 2013 39/5.7% Chol 5.9
July 2014 45/6.3% Chol 5.5
Aug 2015 61/7.7% Chol 5.9
May 2016 84/9.7% Chol 6.9
Oct 2016 53/7%  Chol 6.3
Dec 2016 41/5.9% Chol 6.0
June 2017 51/6.8% Chol 6.1
Oct 2017 52/6.9% Chol
Metformin SR 2000mg, Candesarten Cilexetil 4mg Omeprazole 20mg, Fexofenadine 180mg Co-Codamol 30/500g when needed. Amitriptyline 20mg
Toujeo/NovoRapid, Allergic to Levemir.

Offline Pattidevans

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Re: Don't know where to turn!
« Reply #3 on: 20 January 2017, 08:42:08 PM »
I think I better hunt out the letter that told me who my new DSN is and phone her.

Q.... I will speak to Dr Chandry and I have read the issues and read up on it.  I do not think my Dr is being deliberately obstructive, but she's following the NICE guidelines that seem to be inadequate.  Your surgery obviously aren't even doing that!  I am just a tad worried that Dr Chandry might be seen as being OTT.

I forgot to mention that my left foot is feeling funny.  By that I mean it's feeling a bit like it's wearing a thick sock at times, and sometimes when I put it down I get like an electric shock that shoots from my foot up my leg.  Suspect Neuropathy, particularly since the BGs have been high and also because B12 deficiency can cause it.  The issue with falling over almost nothing was similar right prior to diagnosis when I fell over several times in the street through not raising my foot high enough when mounting kerbs.

I just do not want to come across as a hypochondriac!
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 TessaH

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Re: Don't know where to turn!
« Reply #4 on: 20 January 2017, 09:35:42 PM »
Patti you're not a hypochondriac , you're an informed patient and I'm sure they know it. Foot problem does sound like possible neuropathy - mine is the aftermath of surgery but it's the same symptoms. The couple of people I know who need B12 injections seem to perk straight up again when they've had them, and then gradually sink over the next couple of months. But they aren't dealing with diabetes as well.
Type 2, diagnosed Nov 09. Diet and exercise. Last HbA1c 5.8

Offline Pattidevans

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Re: Don't know where to turn!
« Reply #5 on: 20 January 2017, 10:35:37 PM »
Aww ..... {{{{{{HUGS}}}}}  Tessa and thank you so much for a lovely message.
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 Alan

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Re: Don't know where to turn!
« Reply #6 on: 21 January 2017, 09:46:51 PM »
No insights Patti, just sympathy.

I doubt it helps to know I am on 2000mg metformin and my personal counter for B12 depeltion is to eat meat or fish at almost every meal including breakfast.
Cheers, Alan, T2, Australia.
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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 Pattidevans

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Re: Don't know where to turn!
« Reply #7 on: 22 January 2017, 09:57:49 AM »
Alan, I do eat meat and fish at most meals, (recently been having veggie soup for lunch) but Metformin stops the absorption of B12 from the stomach which is why it causes B12 deficiency in a lot of people, so simply eating the right things doesn't necessarily help.
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 Alan

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Re: Don't know where to turn!
« Reply #8 on: 22 January 2017, 10:05:56 PM »
Alan, I do eat meat and fish at most meals, (recently been having veggie soup for lunch) but Metformin stops the absorption of B12 from the stomach which is why it causes B12 deficiency in a lot of people, so simply eating the right things doesn't necessarily help.

Thx. I stand corrected.
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 Pattidevans

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Re: Don't know where to turn!
« Reply #9 on: 23 January 2017, 05:47:52 PM »
Quote
Thx. I stand corrected.

Apparently some Drs don't know that either Alan!

Ho hum.... BGs have been quite a lot better since I went back on 500mg Metformin and I am due to ramp up to 1,000 mg tomorrow.  Tummy has been a teensy bit iffy, and I've gone back onto the Fybogel Mebeverine, which I've been managing without for some weeks.

The weight issue is something else... but at least there are no potatoes in the house.  Have made Celeriac Dauphinoise for dinner as a side dish to the left over roast beef.
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: Don't know where to turn!
« Reply #10 on: 27 January 2017, 05:27:16 PM »
Update

Am now on 1,000mg metformin SR since last Tuesday and BGs are beginning to behave... have had to cut my basals back by about 5% cos of hypos, though pre-lunch today I was 12.5 and really I knew why... a large Cappucino in Sainsbury's cafe where we had retreated out of the vile weather as we'd had to vacate the house for the agents to do a viewing.
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 himtoo

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Re: Don't know where to turn!
« Reply #11 on: 27 January 2017, 11:48:20 PM »
I just want to send my hugs patti -- this is an effin' crap disease sometimes -- I have not been able to lose weight for years
I know you are a lovely fit lady and will be extremely sensitive to any weight gain-- I will just say that you always look lovely whenever I see you !!!!
T1 Dia Aug 1972 -pumping omnipod since 29/09/15  Losartan 100mg , simvastatin 40mg,Furosemide 40mg, Omeprazole 80mg , Doxazosin 8mg
Hba1c - 06/2013 6.1 02/2014 43(6.1) 07/14 42(6.0) 08/14 40( 5.8 ) 12/14 39 (5.7) 08/15 41 ( 5.9) 10/15 44 ( 6.2 ) 03/16 49 (6.6)
cholesterol --nov 2011 4.3 june 2012 4.4 June 2013 4.1 Feb 2014 4.1 dec 14 4.5 oct 15 4.4
Dafne grad. necrobiosis lipoidica on legs
laser treatment on both eyes 2002 and 2012, injections left eye 3 , wearing Noctura mask since oct 2014

Offline everydayupsanddowns

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Re: Don't know where to turn!
« Reply #12 on: 28 January 2017, 11:10:32 PM »
Sorry to hear that you've been going through the mill with this Patti. FWIW the last time I asked my clinic about slightly odd sensations in one leg and worrying about neuropathy I was told at clinic that neuropathy almost always starts simultaneously on both sides. Hope that IS the case, and that your nerves are still in good shape.

Hardly surprising we have this stuff playing on our minds is it? It all gets mentioned often enough!

Hope you get your doses and ratios sorted. Have you read or reread the Walsh/Roberts Pumping Insulin 'Complete Reset' chapters? Towards the back if I remember, and a guide of how to completely start over if all else has failed.
Mike

Type 1 since: 1991 Last HBA1c: 45 (6.3%)  Total Chol 5.0 (1.9HDL / 2.8LDL / Trigs 0.7)
Pumping NovoRapid in a MiniMed 640G
Blogging at: www.everydayupsanddowns.co.uk

Offline Pattidevans

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Re: Don't know where to turn!
« Reply #13 on: 29 January 2017, 10:38:45 AM »
Paul thank you for your lovely message!  I am so touched.


Mike - thanks for pointing out those chapters in the Walsh book.  I will definitely read 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 GrammaBear

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Re: Don't know where to turn!
« Reply #14 on: 03 February 2017, 03:22:34 PM »
Paul thank you for your lovely message!  I am so touched.


Mike - thanks for pointing out those chapters in the Walsh book.  I will definitely read them!

Patti - for what it is worth, the post by Mike is most helpful.  I had been having major trouble with a number of the settings on my pump and the 'reset' chapter helped me get started back on the right track again.  It does take time but just thought I would add my two cents worth here.

Also, on the home page here there is a page about neuropathy treatment which mentions the DPN cocktail.  I've used this cocktail for several years and it helps considerably.  It does take several months to reach full benefit, so it is important not to become discouraged.  Both my podiatrist and my GP know about the cocktail and say "it can't hurt anything". 
Type 1
Tandem Tslim pump Oct 2015
Dexcom G4 CGM Sep 2007
A1C 6.5%~ Sep 2017