My Husbands Diabetes and constant pain?

[Kasef]

Hi All

I did do an intro post in the introductions bit.

I am here because I feel I am continually fighting a losing battle.

I am not diabetic, I care for my husband who is diabetic and was diagnosed in October 1999 with type 1 diabetes. He also has epilepsy which was diagnosed in September 1993 and Rapid cycling Bipolar type 1 with psychotic tendencies.

When he was diagnosed with diabetes he was off the meter and was put straight on Insulin. He was not a big chap when he was diagnosed, he weighed 101.605kg and is 5’10” and was always on the go, he never stopped from 7 in the morning until midnight. Since his diagnosis he has steadily put on weight and cannot seem to shift it. This prompted his endocrinologist to do an Islet test while we were seeing him for my husband’s ED and low testosterone. Apparently if he had been type 1 he wouldn’t be putting weight on. The blood test for the Islets came back and the endocrinologist said that the test results suggested he may not be type 1 after all but he could not be certain. At this point my husband was pushing the 22 stone mark. Since then we had an appointment with the GP’s Diabetic nurse specialist who saw fit to take it upon herself to change his diagnosis from type 1 to type 2.

About 18 months to 2 years ago my husband was changed from Gliclazide by a different endocrinologist, had to change due to travel and parking problems, to metformin because “It wasn’t working” for him. He had been under good control at this point for 12 years and when we did go to see the hospital diabetes nurse she was happy and told him he only needed to go back and see her if he needed any advice, but otherwise to keep doing what he was doing. The HbA1c results while he was on Gliclazide were always around the 6.5 mark, since changing to metformin it has gone up to 8. About 2 months after the change to his tablets he started to accumulate water on his lower legs and ankles, being an auxiliary nurse and having worked on a geriatrics ward I knew what it was and started to use compression bandages until we could get an appointment with his GP. When we did get the appointment she said “It’s just fat”. 2 weeks later we were back in because the shin on his left leg was red, sore and hot, different doctor, “cellulitis and oedema” was the diagnosis. 3 treatments with antibiotics and steroid cream took the infection away, however he is still on water tablets and the swelling isn’t going down.

We are currently trying to get to the bottom of my husband’s pain issues his knees have always been bad since he was 7, his back pain started when he was 20 and hasn’t got any better. He has had a constant headache for 3 years and now hid neck, shoulders and hands are starting to hurt and become stiff. All we get from the doctor is “it’s fat”, because all they see now is what he has become not what got him here. He is now around the 180kg mark.

Contrary to our health professionals beliefs he does not sit there shoving maccy D’s, 5 pizza, 20 bags of crisps and heaven knows what else into his mouth. He eats lots of meat and veg, he also gets his fruit portions and yes maybe once a month he does eat a pizza or have a bag of chips from the chip shop but on the whole he has a healthy diet. Unfortunately he doesn’t get much exercise due to the pain he is in and the fact the doctor just seems to want him to go for bariatric surgery, quick fix, when all my husband wants is to get the pain under control so he can lose the weight naturally.

Since he has been on insulin and more so now he has been changed to metformin his insulin use has gone up, he now takes a full 3ml pen twice a day and around 150 units depending on his BGL.

I suppose now you have read all this I should ask my questions.

Can taking insulin for a long time make you resistant?

Can the fact that he may have been wrongly diagnosed type 1 and was consequently put on insulin contribute to the amount of weight gain he is experiencing?

 

[Daibell]

Hi and welcome. The comments I'm going to make are generalisations put forward from the many posts I've read over the years plus my own expereince etc. Insulin itself doesn't cause weight gain or really any other symptoms. It does, however, enable the body to make good use of any carbs eaten, so weight gain would normally be due to having too many carbs. Excess weight around the time of diagnosis would point to T2 rather than T1. The reason is that excess weight can cause insulin resistance and a vicious circle of excess insulin in the blood but not enough ability for the muscles to use it. Being thin at diagnosis implies a lack of insulin output and the body is 'starved' of energy from glucose in the blood. Metformin is the standard drug for insulin resistance but only has a small effect. Gliclazide is more often used for early T1 as it stimulates the pancreas to produce more insulin. With the problems your husband is having, many would keep the carbs down below 100gm/day until weight subsides. You suggest he is already low-carbing but it's worth checking the daily amount. Other injectables that are commonly prescribed are Byetta or Victoza that help reduce weight and are used in place of insulin. Obviously your husband has other conditions that may be affecting his symptoms and I can only generalise as an amateur. In summary, quite a few overweight T2s end up on insulin but it may not be an ideal match until weight subsides and insulin can be reduced or is no longer needed.

 

[4ratbags]

I'm sorry that I can't provide any answers for you as I am only a Type 2 and I have no knowledge about insulin. I just wanted to say its great to see you coming on the forum to try and get some help and advice for your hubby. It sounds like you a fighting a losing battle with the professionals but hopefully some knowledgeable members may be able to shed some light on the problem for you. All I can do is send you a hug and a

 

[ButtterflyLady]

Hi there and welcome. I don't know much about fluid retention but isn't it potentially a sign of heart disease? Has that been thoroughly investigated?

Does he have obstructive sleep apnoea? If he snores loudly, pauses breathing in his sleep, and is sleepy during the day, his GP should refer him for an overnight sleep study. At 180kg, the muscles around his lungs would have a hard time pushing against abdominal fat, making OSA likely. Also, weight around the neck helps press down on the airway. Getting this under control would likely help with weight loss, diabetes and any heart/fluid retention issues. It can also help with mental health issues and chronic pain.

I wouldn't write off the option of a gastric bypass just yet. My understanding is that it is considered worth the risks at 125kg, so at 180kg it could be a really good option for him. IMO it would take up to 2 years to lose 80-90kg, and that's if all other factors are optimised, which they might not be. That is a long time for his body to be exposed to the risks of morbid obesity. Yes the surgery has risks but at 180kg he is at significant risk of life-threatening problems that doctors would consider the surgery worth it.

If he chooses not to have the surgery, that's ok, he can still lose weight and get things under control, with the help of whatever medical specialists his health needs require. I suggest he writes a letter to his GP, with the information you have provided above, asking for actions to be taken to investigate his symptoms and manage his illnesses. If this doesn't produce a satisfactory result, he should find another GP. His life is in danger and his GP is sitting back doing nothing about it, basically.

Good on you for looking for answers.

 

[Daphne917]

Hi @Kazef welcome to the forum. Just a few thoughts - is your husband on statins as these have been known to cause problems? What fruit does he eat as it is high in sugar - many of us here find that berries causes the lowest rise in our BS levels? Does he eat many carbs - I used to think that I ate 'healthily' ie fruit, wholemeal bread and pasta, jacket potatoes, rice, low fat foods so wondered why I couldn't lose weight until I read about low carb, full fat diets. Since cutting down on my carbs in Sept/Oct last year I've lost 3 stone (other members have lost quite a bit more) and am still losing although at a slower rate. I presume he has a meter which means that by testing before and after meals he can see what foods raise his BS and adjust his diet accordingly. I'm sure he'll get there in the end and, as is often quoted re the treatment of diabetes, 'it's a marathon not a sprint'!!

 

[Pinkorchid]

Just a thought about the neck and shoulder pain and stiff hands Those symptoms can be of polymyalgia rheumatica. It affects the large muscles causing severe shoulder and neck pain going down the arms to the hands and also it can affect hips and legs and it is treated with steroids. My husband has it but it is in remission now and he has been able to stop the steroids but the GP said it could come back. It may be worth asking the doctor about that

 

[Kasef]

@Daibell I'm not sure he was excessively overweight when he was diagnosed in 1999 at the age of 24, he is 5'10" tall, and at the time weighed 16 stones. He got a diagnosis of type 1 at that appointment.

@4ratbags thanks thought it might help me help him.

@CatLadyNZ I have been visiting the doctors on his behalf regularly. He has just finished his second round of blood tests and they say it is all fine, I am still researching his results as the pain he is in is incredible.

@Daphne917 He is in fact on statins and Irbesartan for high blood pressure as well as other meds for Epilepsy. He no longer takes anti psychotics like Olanzipine, which is known to increase appetite, he was on this for 10 years.

@Pinkorchid We are still trying to get them to look pas the weight issue as the weight is partly due to non exercise because of pain and yes also due, to my embarrassment, what he has been eating.

General.

I have copies of his 2 sets of blood results now so that I have the info for my research. To my embarrassment the diet that I have had him on over the years has been a low fat diet and what may be classed as a moderate carb diet as that is what I am used to living over my younger years with my Nan who has a heart condition and my step dad with the same so i thought i was doing him a favor. However I have now made the modification to his diet and cut out all processed carbs, the only carbs he will now have are from the fruits and veg he can eat.

My husband was diagnosed with type 1 diabetes at presentation of symptoms in 1999, 11 or 12 years later after being treated as a type 1 he has been re-diagnosed I feel wrongly as type 2, this is when he had the islet test. He didn't start with the weight gain until 2 or 3 years after diagnosis.

I have been backwards and forwards to the doctors now half a dozen times and feel like I am getting nowhere, just a lot of assumptions that he is eating junk. And yes I suppose what he was eating while healthy foods could be classed as junk but it was a healthy diet.

One question I forgot to ask, and thank you Pinkorchid for the in formation about your hubbys polymyalgia rheumatica, it gives me something to look at and chase up, how many of you or partners were very very active before diagnosis of type 1 or type 2 and was it back pain/pain in general that started to decrease your activity?

 

[Brunneria]

I've tagged @graj0 because he may resonate with this subject.

 

[ButtterflyLady]

I think even without pain he would find it hard to exercise at 180kg. Imagine trying to go for a walk with an 80kg backpack on, I couldn't do it. Exercise doesn't contribute very much to weight loss anyway. It is good for your body chemistry and if you exercise enough you get endorphins from it, but it doesn't really burn many calories. The only way to lose weight is to restrict those calories down to a minimum.

Irbesartan has a number of side effects and interactions that it would pay to be aware of. It's not a good idea to take it with a drug called aliskiren(tecturna).
http://www.drugs.com/cdi/irbesartan.html

I know it's hard to get his doctor to take notice, but he should really be referred to a pain clinic or a rheumatologist. Yes, his weight is contributing to his symptoms, but IMO it's inhumane to say just because he is obese he shouldn't have help from a pain clinic. Opioid meds would likely affect his breathing and make any constipation worse, but something has to be done IMO. Anti-inflammatories would be no good for his heart, stomach, and fluid retention.

Good luck, and hugs.

 

[ButtterflyLady]

Just remembered one more thing. Paracetamol can be effective for chronic pain if it is taken at the maximum dosage of 2 x 500mg 4 times a day. After a couple of days it seems to work better. I think he should check with his doctor first though because he has some other health issues that probably increase risks. Paracetamol can affect liver function, so blood tests are needed to monitor that.