Fed Up

[Rachox]

I’m fed up this evening. Just before Xmas some of my toes quite suddenly turned purple, my feet became painfully cold and I developed chilblains which I’ve never suffered from before. After a full panel of bloods at my GP’s, which all came back normal I was referred to Vascular surgery and today my turn came around. As I expected the Dr immediately blamed my diabetes, I was ready for this and explained how I kept my blood sugars under strict control as shown by my HbA1cs being consistently in the 30s. He asked how I controlled it to which I replied Rybelsus and low carb eating, he was totally uninterested and quickly proceeded to ask what other things I suffered from (asthma, oesteoarthritis and a skin condition). Ah he said you have auto immune condition that would do it. I’m not aware that type 2, asthma or oesteoarthritis are autoimmune, my skin condition may or may not be AI depending who you listen to and bloods at the GP’s had ruled out immune problems! I really did give up at this point, he had no idea why my circulation has gone like this, except to blame my diabetes. He prescribed GTN patches, well he hasn’t but will tell my GP to, I have to put one on each foot each day and see if that helps.

I suppose I just posted to have a rant, is all this effort to keep my blood sugars normal really going to prevent complications?

Has anyone else had problems with their circulation despite excellent control?

Also has anyone else been prescribed GTN (normally used for angina) for circulation in feet?

 

[TooSweetForMe]

I've never even heard of GTN. Guess I need to do some research on it. Learn something new every day.

 

[Rachox]

I've never even heard of GTN.

It’s short for glyceril trinitrate often used as tablets or spray under the tongue to treat an angina attack or as a patch stuck on the torso to prevent angina attacks.

 

[TooSweetForMe]

Thanks @Rachox.

 

[Jaylee]

Hi @Rachox ,

Sorry to hear you are fed up.

Thinking outside the box on this.
Did you have operations a while back on your feet?
I’m not sure what the exact procedure was..

Best wishes.

 

[Hopeful34]

suppose I just posted to have a rant, is all this effort to keep my blood sugars normal really going to prevent complications?

I understand your frustration, and am sorry you've had all this to cope with @Rachox but you're giving yourself the best chance of avoiding complications.

I suddenly started getting chilblains on my hands 4 years ago, and have had them every winter since. Couldn't believe how painful and itchy they were. I was prescribed Rectogesic (normally used for anal fisures!!) by a gp in our surgery, who also holds dermatology clinics at the hospital. Later Nifedipine was added by the rheumatoligist.

Hope the patches help. Take care x

 

[lovinglife]

So sorry you’re going through this @Rachox, I’m also sorry I can’t be of more help as I’ve no experience of what your going through but just wanted to say I’m hoping for the best for you and as @Hopeful34 says you are giving yourself the very best chance with your amazing control. Life is unfair sometimes and it sucks especially when you always do your very best, sending hugs

 

[Rachox]

Did you have operations a while back on your feet?

Thanks for your thoughts and best wishes @Jaylee . I have had several, but it was boney stuff which shouldn’t have affected the blood vessels. The last one it took ages to heal, now I see why if my circulation was beginning to fail

 

[Rachox]

Later Nifedipine was added by the rheumatoligist.

My GP started me on another ….dipine, Amlodipine, Nifedipine gives me crushing headaches. I think it may have helped a little. Had to laugh at your anal ointment!

 

[Hopeful34]

That's interesting @Rachox I couldn't take normal Nifedipine for the same reason, but the slow release isn't too bad.

 

[Antje77]

****, I'm so sorry you're going through this, and sorry the idiot vascular surgeon got stuck at hearing diabetes and other pre-existing conditions. Sounds pretty much like my neurologist last year who was way too quick to blame diabetes (hba1c in mid to low 30's for years) for my complaints.
I hope the patches will help, and if not, please keep pushing for a proper diagnosis!

 

[Chris24Main]

So sorry to hear this @Rachox ... and I likewise have nothing. Sometimes it just sucks...

 

[MrsA2]

So sorry. You have some of the best and longest bg control of any one on here. I've long admired your resolve and motivation.
It's really annoying, and short sighted, when medics don't hear their (expert) patients.

Quick Google research shows it could be any of multiple things. I do hope you keep pressing for more investigation.

All I know is that my feet have been really cold since diagnosis/low carbing but I put it down to loss of body fat. I will now be watching for colour changes... so thank you for sharing your troubles.
Wish there was more I could say.

 

[MrsA2]

Ps. It will be really interesting to see what he puts in the letter to GP. You should be able to see it on line in due course

 

[Melgar]

@Rachox , I'm so sorry you are having a tough time of it. I know you were having health issues. I also know that you have worked very hard to keep your blood sugars in the normal range. That is all we can do really, but then to be told it's down to diabetes, very frustrating. Wishing you all the best.

 

[Nicola M]

So sorry to hear about your struggles @Rachox whilst I have no advice or suggestions I know how frustrating it can be when every doctor decides that your issues are due to your diabetes without looking into what else could be causing it first. Diabetes is not the cause for everything!!! Hope things look up for your soon

 

[NewbieHelp]

Sorry to hear you are going through this. Unfortunately seems to be the case that some health professionals can’t look beyond one thing….. take care x

 

[Outlier]

So sorry you are having these problems. I can't offer any practical advice, but I sincerely hope that you will have better care imminently.

 

[shelley262]

So sorry to hear about both the circulation problem and the way it was handled at your appointment yesterday - very frustrating for you. When you have worked as hard as you have in managing type 2 into remission it must feel more than annoying to have the Dr immediately blame the type 2 rather than look at what else may be happening.
I can't offer any information as no experience of circulation probs yet but wanted to send you lots of hugs and to say I'm thinking of you as you navigate another health issue.

 

[JoKalsbeek]

I’m fed up this evening. Just before Xmas some of my toes quite suddenly turned purple, my feet became painfully cold and I developed chilblains which I’ve never suffered from before. After a full panel of bloods at my GP’s, which all came back normal I was referred to Vascular surgery and today my turn came around. As I expected the Dr immediately blamed my diabetes, I was ready for this and explained how I kept my blood sugars under strict control as shown by my HbA1cs being consistently in the 30s. He asked how I controlled it to which I replied Rybelsus and low carb eating, he was totally uninterested and quickly proceeded to ask what other things I suffered from (asthma, oesteoarthritis and a skin condition). Ah he said you have auto immune condition that would do it. I’m not aware that type 2, asthma or oesteoarthritis are autoimmune, my skin condition may or may not be AI depending who you listen to and bloods at the GP’s had ruled out immune problems! I really did give up at this point, he had no idea why my circulation has gone like this, except to blame my diabetes. He prescribed GTN patches, well he hasn’t but will tell my GP to, I have to put one on each foot each day and see if that helps.

I suppose I just posted to have a rant, is all this effort to keep my blood sugars normal really going to prevent complications?

Has anyone else had problems with their circulation despite excellent control?

Also has anyone else been prescribed GTN (normally used for angina) for circulation in feet?

Nothing to offer, just that stuff that dilates the veins can often trigger migraines/headaches. Dosage and method of taking them can make a difference. (That's why the cream for anal fissures can give migraines. Doesn't just work on the bottom it's being put on, if you're too liberal with it!). If you're too generous, the headaches'll pop up, use too little and it won't dilate the veins enough. Personally I feel like a local cream or patch would be better than something taken orally, but you could always look into something like a low dose oral dilator, if this is a no-go. There's multiple ways to skin this cat, so keep looking for whatever works for you.

I just figure, if your control hadn't been this stellar all these years, this might've happened sooner. Whatever it is caused by, I feel it's unlikely diabetes triggered it or made it worse. That's still a win. I guess.

In any case... I hope this gets resolved soon. And with less not-listening-to-the-actual-patient-ism.
Hugs,
Jo