Hospital Appointment -Pleasantly Suprised!

[janabelle]

Hi,
Some regulars will know that I've posted a lot about the ill-health and poor BG control I experienced on while on Lantus. While it's been reassuring to know I'm not the only one who's suffered these probs, it disturbs me how many people report the same things continually on this forum about long-acting insulin analogues.
i'd made a formal complaint about my consultant failing to record these probs in my hospital notes and they have since been amended. However I was pleasantly surprised by the reaction i got from the doctor I met with today at my routine appt. She seemed genuinely interested after reading my notes and told me that she would be keeping my experience, and side-effects I suffered due to Lantus in mind when dealing with other patients. I also told her I do not, and never had Fibromyalgia, the misdiagnosis was based on symptoms which turned out to be Lantus side-effects.
She told me she would watch out for probs, suchas extreme lethargy, erratic control, joint/muscle pain, and other probs I'd had while on Lantus, when seeing other patients. She's taken on board that while I was on Lantus my Hbaic results were within healthy range-despite it giving an inaccurate picture of my control. Although she was pleased with today's 6.1 and so am I this time!
One thing that did concern me, and I put her straight, is that she though animal insulins had been phased out.
Best visit I've had to that clinic in 16 years- maybe the **** I went through wasn't for nothing, and today,at least ,I feel a bit better about it.
Jus

 

[IanD]

Good news, Jus, have you now been changed onto a more suitable insulin?

Our blind Indian friend Sarah has her next consultant appt on Tuesday. She's been T2 for about 15 years, & on Lantus insulin for half that time, dose rising from 6 to 40 units, administered daily by the nurse who also measures her BG daily. Her HbA1c is 10-12 & increasing insulin hasn't changed this. (Though it might of course be worse without it, but if fact she was given Lantus with HBA of 9 & it hasn't improved.) Do you think a change of insulin would help, & how do we go about it?

Nurse measures BG at 10-20 & writes it down, only returning for a check when it goes above 25. Her results are not given her, as the consultant hasn't a printer. We are told her Dr is sent them, but she has seen him once in 4 years. He never visits, but prescribes by phone.

We normally attend her visits to the consultant. We've been told her BG results are not a cause for concern unless she feels ill. She is always tired, but that doesn't count.

She is vegetarian & dependent on care assistants who provide cereal, bread & vegetable gruel, & Indian savouries (e.g. samosas, which are potato & peas wrapped in pastry & fried in oil) but rarely protein. We are too far away to take over her food care.

 

[janabelle]

Hi Ian,
That is shocking!- Someone said recently on this forum-some doctors should be hung, drawn and quartered- Sarah's doc sounds like a prime candidate! I'm losing my sight to Retinitis Pigmentosa, and worry about how I'll manage my diabetes when my sight deteriorates further; since I was diagnosed type-1 21 years ago, diabetes care generally seems to have gone down the pan. :evil:

I changed to animal (porcine) insulin, that's how I discovered Lantus was the rogue insulin. Constant extreme tiredness was a huge issue and I felt like I was being poisoned on it-my quality of life was so poor and I had no idea what was making me so ill. Quality of life IS important, and while constant high BG levels can make you feel lousy and tired, so can Lantus. You can trawl the net for "lantus problems" and print of some info for her consultant. If you need any help with that, I already have loads- feel free to PM me. There's also a lot of info about synthetic insulins and associated problems on the IDDT website.

Some docs are reluctant to change patients to animal insulins, and for some strange reason consider them old-fashioned which infuriates me, mostly it's down to ignorance and because docs don't have experience of treating patients on animal insulin. As animal insulin is the only natural and true insulin on the market I find it puzzling that docs have this backward attitude.

Of course a high-carb diet will not help matters; might be worth writing a letter to her carers to address the subject, requesting more veg and protein based meals, if that's what your friend wants.

Sarah is very lucky to have a such a caring friend.

Jus

 

[jennytainer]

The hospital services should be improved more and the administrators should know everything that is really important to the hospital services. The improvement is a great help for patients.