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Could Really Use Some Advice....Again...

B

BlindFaith

Well-Known Member
Messages
260
Location
South UK
Hi guys,

Been away from here for a while - to be honest I've been feeling pretty rubbish over the past couple of weeks; fibromyalgia and chronic fatigue have both flared up like mad.

I hope nobody minds that I'm asking for help and advice yet again.

I saw the specialist consultant at the hospital a couple of weeks ago.
He was fairly happy that my HbA1c has gone from 118 down to 83 (13%-10%) which is good (although still not where they want it to be) but was concerned that my daily blood sugar levels are still pretty high despite being on Metformin and Victoza; as well as a low carb, low fat and very low calorie diet as recommended by my Dr and the consultant.
He's also concerned that my feet have zero feeling and swell badly; with tingling/pins and needles. My hands also tingle on occasion as well.

I've been told that low carb means cutting out bread/pasta/rice, etc but that I absolutely HAVE to eat fruits and vegetables despite the low carb diets being lower on the fruit side due to their carb content.
When I mentioned this I was told that I MUST eat fruit otherwise I'll start becoming deficient in a lot of things.

I've also been told that I have to eat low fat (despite the lower carb diets needing slightly more fats) and that I must consume no more than 1000 calories per day.

The consultant has now told me that the only way forward for me now to control my diabetes is to have weight loss surgery.
He said that because he can't identify what in the insulin I'm allergic to then this is my only option and I should strongly consider it.
I felt as though I had to say yes to this; as though if I said no that I wouldn't be offered any more help or support and I just felt so pressured to agree to be put forward for it.

Since then I have read both sides (good and bad) of weight loss surgery and I have researched everything I can possibly think of to do with it and to be honest I am terrified.
I don't want to go ahead with it because the risks to me seem to outstrip any of the benefits; plus knowing that an old friend of the family had this surgery and died 2 weeks later due to complications that came out because of it and you can understand why I'm so scared.

So I spoke to my dr this morning and told her that I wasn't happy about this and that I had felt pressured to say yes to it and that I really truly did not want to go forward with this.
Instead of listening to me and trying to understand where I was coming from the dr told me I have to see her in 2 weeks time because I might "change my mind" and that if I don't go forward for the surgery (which she also has told me is my only option) that I would have to restrict my diet further and go down to 500-600 calories, ever lower carb and lower fat.

I am feeling pretty down about all of this, I'm near tears and I feel so confused and scared and stressed out.
The whole situation has left me feeling sick with a horrible cold and sinus trouble, my skin condition has worsened and I'm exhausted. I've done almost nothing other than sleep for the past couple of days.

I just...I have no idea what to do.
I'm sorry for rambling at you all again.
 
Dear BlindFaith

I am so sorry to hear how difficult your life is at the moment. No wonder that you are feeling so scared, confused and stressed. I'm sorry that I can't offer any wisdom or advice about the surgery option. The restrictive diet sounds punishing, but I think it is possible to feel fully satisfied on the low calorie diets if you are eating the right things. I would ask someone on the low carb forum if they have had a similar problem and if so, how did they deal with it.

Regarding fruit - do you have any data from testing pre and post different fruits?? as everyone notes, berries seem to be the least harmful to diabetics, especially eaten at the end of a bigger meal.

If you do restrict your diet to the lower calorie zone, will you get the support of a dietician?

I hope someone who is able to give you proper advice comes along soon. Meanwhile, I just wanted to say hello and send my warmest wishes. Sorry you are so down.

Cath N
 
Hi BF,
sorry to hear about all your problems :(
You mention an insulin allergy! Have you tried animal insulin?
 
Hi BF, sorry to hear things are still bad, I was wondering how you'd been after the reactions to insulin. As CarbsRok said have you tried animal insulin. From the bits I've read pork insulin is very similar to our own. Have you seen a specialist for allergies? Maybe they could identify what it is your allergic to and either try antihistamines or desensitizing you. Don't let them pressure you into having surgery, if you have it then it must be your decision. Can you ask to see the surgeon to discuss the op.

Sorry that I can't really help but hopefully someone else may have some experience of allergies to insulin. Thinking of you (((((HUGS)))))

Ann x
 
Hi Cathy,
Thanks for the reply :)

I mentioned to them that any fruit raises my blood sugar - even the berries, sometimes to a higher level than a standard bar of Dairy Milk!
I showed them the levels I'd been having over a month and they were still in the high teens; only falling to single digits once or twice (although never to the levels they want me to be at) and this was on a low carb diet with fruits restricted to none and then berries only.

I've been told I absolutely HAVE to eat any fruits (perhaps excluding bananas) and the same with vegetables; but that I have to stick to the 1,000 calories and eat only low fat. I feel like they're making me do every diet all at once and the dr I spoke to this morning actually told me that I needed to do a crash/starvation diet (those were her words exactly) in order to lose weight if I choose to not go for the surgery.

I've been given a food diary in which I need to note down everything I eat and drink for four consecutive days which then gets returned to the diabetic dietician team. Whether or not I'll have their ongoing support after that is something I don't know about.

How are you, anyway? I think I saw a post from you regarding the diabetics clinics and I swear you were at the same hospital I had mine in - the description was exactly as mine was!


CarbsRok - thank you for the reply.
Nobody has mentioned animal insulin - the specialist told me that if they went the insulin route they would have to get me in for monitoring to ensure I had immediate help if I had a reaction.
Apparently though, that isn't an option for me as when I asked about it I was immediately brushed off in favor of the surgery route.

Ann - thank you :)
They said I don't need to see a specialist for the allergy; it's definitely something in the insulin but they can't be sure what. They said it could even be the needles but I've been using Victoza for a month or more with needles and it's fine.
I feel like they just want me off of their hands as quickly as possible. Surgery would do that as they wouldn't need to deal with me at all if I agree.
 
Hi BF...
I switched from levemir to hypurin porcine animal insulin and it was the best thing I ever did!
Hadnt and wasnt improving much the months I was on the levemir , so I researched the animal
insulins, half killed myself staying up the 48hrs to do it prior to my emergency appointment made with
my DSN in febuary as was so ill with repeated infections, plus lipos site reactions from the levemir shots
worst of it was my high blood sugars werent coming down much at all... Hence why my DSN wanted me
back in quickly to do an insulin therapy change.
As Ann above post says I was sent for allergy reaction testing also, tested negative to the tests.
Only showed positive with the lipos levemir injection site areas, huge red blister like raised red lumps both under
and on top of my skin.
Plus had - had fog muggy head and felt so tired/weary whilst on the levemir, it was agreed to consider other
insulin therapy immediately...
With my history of so many meds intolerances also , this hadnt suprised me one bit at all.
After researching the animal insulins it was 'ME' that suggested the porcine insulin to them...
Thankfully she listened and accepted to give my 'choice and wishes' a go .
It was the best thing I did to do this switch onto animal insulin, no site problems and a lovely clear
focused head with far more energy than I had - had for years!!!!
It gradually started to reduce my high blood sugars as I found the units levels needed to suit me.
Currently use and do 20/20 split doses basal backgrounding insulin to keep me covered sufficely.
Might be worth researching and digging about on the animal insulins as they ARE the nearest closest
matched our own.
I can only share my story with you, and let you choose your own choice
Please do let us know how things go...
Anna.
 
BF...
Just an extra thought for you.
Could it be the "preservatives" used in the insulin ????
Was told this can be the case with some patients using analogue AND animal insulins.
It's not the insulin but the "preservatives" used in it causes the reaction(s)
Anna.
 
Hi Anna,

Nobody is certain what exactly I react to - they've said it could be anything from the needles used to the actual insulin itself; but nobody has bothered checking it, despite my asking them to.

I have just sent this email to the nurse I see at BDEC:

I spoke with my doctor at my surgery today regarding the bariatric surgery. In honesty, I am not feeling at all happy about it at the moment.
I have done nothing but think about it and research it and talk to my husband (and people that have gone through it) about it until I'm dizzy with information and I really do not like what I've been reading.
I have looked into the good experiences as well as the bad experiences and I've researched how it's done, which type of surgery is used most often and which has the better results. I've also looked at the risks and with all of this information in mind I do not feel at all comfortable going ahead with it at this point in time.

My doctor has told me that it's my only option and if I do not go ahead then I will have to reduce my calories even lower than 1,000 per day.
I'll be honest, I'm struggling at 1,000. I've been nauseous, dizzy and the chronic fatigue has flared up to the point where all I've done for the past few days is sleep. I have felt very weak and faint; my husband had to literally lift me onto the sofa earlier today as I kept stumbling.

I am, however, persevering.

I was wondering about the insulin situation - obviously the human/analogue insulin isn't something I can tolerate; but I have done some research into the animal insulins and from what I've read the porcine based ones tend to work with people that cannot tolerate the other forms.
I know that this runs the risk of putting my weight up; but then if I'm on a restricted calorie, low carb and low fat diet then surely it wouldn't be such a problem?

I just feel as though we should explore every option I have to manage my diabetes without going to the extreme (and potentially dangerous to my health) measures of surgery.

Please let me know if this is something that can be looked into; I would really appreciate it.
Click to expand...

I'm waiting for his reply; but I do have a feeling it will be a resounding "no".
I think that it would be too much effort and too much a drain on their resources to have me in for a couple of nights to test insulin and make sure I don't react.
Like I said before - they're taking the easy option; but not really thinking about the impact on me while they do it.
 
Hi Natalie,
there is also bovine insulin to consider as well.
Your team should though exhaust all options and adhear to your wishes regarding insulin and choice.
I know that when I showed an allergy to insulin it was introduced 1 unit at a time until my body accepted it. So don't give up hope.
 
Can't advise any more than the others. I just wish you luck, on the positive side having the bariatric surgery can cure diabetes, then there are no more complications.
I actually don't see why the docs want you to eat fruit it isn't really essential. Its the green stuff we should be eating.
There is a good book on green juices that might be worth having a look at its called 'crazy sexy diet' its all about juicing avocados and cucumbers etc. The author has put her cancer into remission. Just a thought, but I wish you all the best.
Do let us know how you get on.
 
Thanks CarbsRok and Dawn,

I have a reply from the BDEC nurse:

I have liaised with Dr Kerr

Who requests that we continue at present on the Victoza and reduced carbohydrate diet until the dietitians (Sept appt) have had an oportunity to evaluate your food diaries and assessed your diet.

Many thanks
Click to expand...

So that's nice and helpful :roll: I can't speak to my doctors again as I've already felt forced to accept an appointment to see someone there regarding the surgery and the doctor I'm seeing is actually the surgeries diabetic doctor.
I feel like I'm banging my head against a brick wall.
 
CarbsRok said:
Hi Natalie,
there is also bovine insulin to consider as well.
Your team should though exhaust all options and adhear to your wishes regarding insulin and choice.
I know that when I showed an allergy to insulin it was introduced 1 unit at a time until my body accepted it. So don't give up hope.
Click to expand...
Interesting!!!
This is what I was instructed to do - do just 2- 5 units per weekend starting from only 5 units initially.
Each weekend, we looked back on my recorded blood sugar's for that week saw that I was still sitting with too high readings.
Also I was making notes of how I was feeling and progressing on the porcine insulin too.
After looking at it all as a bigger picture as to what was happening and progress made etc...
Then cranked I up the insulin another 2- 5 units for another week.
I also spoke to jenny hirst at IDDT , the morning I was due in to see my DSN and she steered me in right direction with some
great tips and pointers to say or mention also.
Hope this helps too.
Anna.
 
Ah, funnily enough I was given the link to IDDT earlier and I've emailed them with a brief overview of what's been going on.
Fingers crossed they can give me some advice of what I need to do and the questions I need to be asking when I see my doctor in a couple of weeks.

Anna - how have you been on the porcine insulin? Did you have any unwanted effects at all? How has it helped your blood sugar levels?
Sorry for all the questions, I just want as much information as I get!
 
BlindFaith said:
I have liaised with Dr Kerr

Who requests that we continue at present on the Victoza and reduced carbohydrate diet until the dietitians (Sept appt) have had an oportunity to evaluate your food diaries and assessed your diet.

Many thanks
Click to expand...
Click to expand...

Hi BF - excuse me chipping in, but that message from your doc talks about restricting carbs and yet you say you're struggling to restrict calories.

There's a definite contradiction in trying to eat low fat and reduce carbs, but it's possible if you avoid low-fat foods as such (which have a higher carb content). I realise a low carb diet is by definition higher fat, but it's generally felt that the effect of restricting carbs has a greater effect on your weight than the additional fat you consume.

As to the fruit, I would suggest that in the short term you concentrate on the veg and perhaps research vitamin supplements for any vitamins you would have got from the fruit.

It sounds like you've got a window of opportunity before the dietician's appointment to try a few things and see how you feel. It's not going to be fun but it's got to be worth a shot.

Good Luck

Swim
 
Hi Swim,

Yes, the consultant, the nurse (who the email is from) and my doctor has said that I HAVE to restrict carbs AND calories as well as keep things low fat.
I'm struggling to do all three together as I've been told to. I've been low carb for about 4 months without much success and at the moment I am feeling very unwell which is making things harder.

I'm trying very hard to do as I'm being told to do so at least I can say that I've done what they've told me to.
 
Hi Natalie

Not sure why they want you to eat loads of fruit but if you eat some try eating it with your main meal as dessert as that works for me mostly.

It is not impossible to do low carb low fat but many people find they end up on to low a calorie intake long term but as they want you to only do a 1000 cals per day starvation diet I would say it is an option in my opinion. My concern would be that if you cut both carbs and fat you're just going to feel hungry a load of the time so it may end up being mentally very tough to keep it up. You may actually find a Newcastle diet style regime preferable short term if you think you might be able to do that.

I would also agree with Carbroks that you should rule out all the insulin options before making a decision.

All very difficult but it will get sorted in the end.
 
I'm sorry to hear you have been having such a hard time, but can I suggest you have a look at the Newcastle Diet thread that Defren posted. I know it would be tough, and I can't claim to have tried it, but if the choice is Newcastle Diet or Bariatric Surgery it might be worth it. I was properly blown away by Defren's description of her rapidly increasing health, mobility and weight loss. If you have to go extreme this might be the way.

Don't let the Doc's bully you, its your body and its your choice. Good luck
 
BlindFaith said:
Ah, funnily enough I was given the link to IDDT earlier and I've emailed them with a brief overview of what's been going on.
Fingers crossed they can give me some advice of what I need to do and the questions I need to be asking when I see my doctor in a couple of weeks.

Anna - how have you been on the porcine insulin? Did you have any unwanted effects at all? How has it helped your blood sugar levels?
Sorry for all the questions, I just want as much information as I get!
Click to expand...
You ask as many questions as you need ...
You do need and want to gather as much info as you can before choosing the best steps forward for yourself!
This is important for you, as you dont want to end up with 'more' issues or problems given your reactions/sensitivity to insulin.
Been great on the porcine insulin , it actually gives me great hypo awareness also, so that I can treat it sooner
before it develops with severe complications.
The 'only' thing it can give and does make my skin itchy and sensitive to temperature/climate changes.
Phoned the manufacturers up to query this fact, they confirmed it!!!
I can live with this as it is the 'only' one thing that I do find happens, at its worst when my blood sugars peak after
eating. Once they settle back down it does subside... :thumbup:
Have found it kicked in best split dosed 20/20units neeeded basal backgrounding to keep me suitably covered 24hrs.
I notice you are using victoza [liraglutide GLP1 enzyme] how are you finding using this?
I am fine on this therapy , it works well with my porcine insulin.
My consultant agreed for me to continue to use it as I do tollerate it well...
They were great with me letting me take it slowly and steady doing things in steps to allow my body and system to get accustomed to this new therapy that "does" work for "me"...
Feel better than have done for a long time! Clear head and focus, more energy, less illnesses too plus
my HbA1c has come steadily down since using this insulin therapy. See my signature.
You must dig deep and get all the knowledge and info you can before decideing what you would like to do.
It IS your choice and your body n health that matters most ...
Keep rummageing around - ask all the questions you wish - dig deep - listen to your own body n instincts too.
Hope this helps.
Anna.
 
Anna - thank you for that, it's certainly given me something to think about.
I'm okay with the Victoza I've had the stomach upsets (I won't go into too much details!) but that's about the only side effect.
Although it's meant to help with weight loss it's not done for me - I actually gained 8lbs which I was worried about .
Your HbA1c is amazing!! I'm really happy that you've found something that works for you and I'm doing all the research I can into the porcine insulins so I can take it all to my doctor and TELL her what I WANT to make things a bit better.

If she refuses, or if she passes me off to someone else (like the oh-so-hopeful BDEC) what can I do?
Can I demand treatment or is a doctor saying "no" the end of it?
 
Hi. I can't understand the need for stomach reduction surgery unless you are eating too much? If you are eating too much then that obviously has to be reduced but if you are already as you say on a fairly strict diet then stomach reduction surgery is surely pointless? I'm guessing that the HCPs are assuming you are actually eating more than you tell them but only you know the answer to that. It sounds like you really are working hard on diet and that you are really in need of insulin and others have made suggestions for possible solutions. Many would say that fat isn't the 'baddie' that the NHS would have you believe and that it's mainly carbs that make you put weight on so I would watch the carbs rather than fats. Vegetables are obviously very good and some fruit where you know it won't raise your sugars too much. You haven't mentioned proteins? I would have plenty of protein. Don't search out 'brand-name' diets just read this forum etc and find the right mix of foods for you. Can I ask what carbs you do have during a typical day and how much?
 
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