Fed Up

[Jaylee]

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

I don’t know why.
But I had the idea you’d had some kind of “metal plating” or joint replacement done?
But maybe I got the wrong end of the stick at the time..

I think your set back shouldn’t detract from the great A1cs you’ve achieved.

I’m rooting for a resolution for you.

 

[Rachox]

Thanks for all the virtual hugs and supportive comments. I just need to put my big girl pants on now and go back to my lovely GP and get started on the patches and hope they work, so I can avoid going back to the vascular dept at the hospital!

 

[MrsA2]

Thanks for all the virtual hugs and supportive comments. I just need to put my big girl pants on now and go back to my lovely GP and get started on the patches and hope they work, so I can avoid going back to the vascular dept at the hospital!

I think you could ask your GP for a referral for a second opinion if you highlight your concerns that the first vaso guy ignored your well controlled bg. It might mean a different hospital and more travel but imho its worth pursuing. As is asking if there is any other avenue to explore

 

[Rachox]

I think you could ask your GP for a referral for a second opinion if you highlight your concerns that the first vaso guy ignored your well controlled bg. It might mean a different hospital and more travel but imho its worth pursuing. As is asking if there is any other avenue to explore

Yes that’s crossed my mind. My diabetes review is due in a few weeks so I’ll leave it til then before I explore a second opinion, but thanks for the suggestion.

 

[Pipp]

Just catching up, @Rachox. Sorry you are having these problems and missing your input. Wishing you well, and hoping you find your GP will help solve the problem.

 

[Rachox]

Today I have been chasing the prescription I’m supposed to get for GTN patches, it’s bouncing between GP, surgery pharmacist and the consultant at the hospital as it’s an off licence use and they need clarification on dosage.
However although i haven’t seen a full letter regarding my appt at the hospital I have seen a summary which diagnoses me with Raynauds, so looks like he thought better than to blame my diabetes after all!

Edit for typo

 

[AndBreathe]

Today I have been chasing the prescription I’m supposed to get for GTN patches, it’s bouncing between GP, surgery pharmacist and the consultant at the hospital as it’s an off licence use and they need clarification on dosage.
However although i haven’t seen a full letter regarding my appt at the hospital I have seen a summary which diagnoses me with Reynauds, so looks like he thought better than to blame my diabetes after all!

Hi Rachox, sorry to hear you're having a challenging time.

If you decide to seek a second opinion, it's worth remembering you can ask for a named referral to a specialist of your choosing. That does, of course, carry some requirement to research them before asking for the second opinion. YOu can also ask to go out of your usual area, although worth considering accessibility when it comes to appointments. No point asking for MrX, only to find yourself needing to travel long distances for reviews.

In terms of Reynauds; do you have any other autoimmune conditions and did you have appropriate bloods before your appointment to influence his diagnosis?

Sometimes it feels like we're dealing with the Wild West out there, when dealing with medics.

 

[Rachox]

Hi Rachox, sorry to hear you're having a challenging time.

If you decide to seek a second opinion, it's worth remembering you can ask for a named referral to a specialist of your choosing. That does, of course, carry some requirement to research them before asking for the second opinion. YOu can also ask to go out of your usual area, although worth considering accessibility when it comes to appointments. No point asking for MrX, only to find yourself needing to travel long distances for reviews.

In terms of Reynauds; do you have any other autoimmune conditions and did you have appropriate bloods before your appointment to influence his diagnosis?

Sometimes it feels like we're dealing with the Wild West out there, when dealing with medics.

Thanks for your input, I have looked into a private vascular surgeon to get a second opinion, at a private hospital where I have been a couple of times in the past, but am holding fire til I’ve tried the GTN and I’ve had a chance to discuss things at my diabetes review next month.
As for the autoimmune component of this I do have a skin condition that some consider an AI problem. I had a whole raft of blood tests including auto immune stuff, at the start of all this and everything came back as normal.

 

[AndBreathe]

Thanks for your input, I have looked into a private vascular surgeon to get a second opinion, at a private hospital where I have been a couple of times in the past, but am holding fire til I’ve tried the GTN and I’ve had a chance to discuss things at my diabetes review next month.
As for the autoimmune component of this I do have a skin condition that some consider an AI problem. I had a whole raft of blood tests including auto immune stuff, at the start of all this and everything came back as normal.

You are entitled to a second opinion on the NHS, although as thins are currently, that might not be the fastest of all processes.

If you do decide to go privately, I'd suggest a subject access request for your NHS medical records relating to this issue as I'm thinking you might not have access to your hospital results to share with your "chosen one". Whilst they might like to do bloods etc themselves, it could just save a bit of cash to have the recent stuff to hand.

AI conditions differ a bit one to another, but the presence of antibodies in isolation doesn't usually totally discount a condition. It's a real pain.

Fingers crossed you can sort out the GTN quickly and ideally start to manage your condition, whatever it is.

 

[Rachox]

If you do decide to go privately, I'd suggest a subject access request for your NHS medical records relating to this issue as I'm thinking you might not have access to your hospital results to share with your "chosen one". Whilst they might like to do bloods etc themselves, it could just save a bit of cash to have the recent stuff to hand.

All the blood tests were taken via my GP so I could show them to any private dr via my patient access app, so that shouldn’t be a problem.

 

[Melgar]

@Rachox , I had issues a while back with numb fingers, toes and the tips of my ears. It even affected the end of my nose. My extremities would go red, then blue, then completely white and numb then the tingling would start. Very painful. It could be just a couple of fingers, some toes, or all of them. The tingling happened at the very end as the feeling was coming back. It could last a few moments or quite a few minutes. I thought it was related to my diabetes. It seemed to get triggered when I was cold or I was stressed. I went to the Dr with it. I did not have a history of Reynaud's disease. My Dr said it was secondary Reynauds from my medications. I was taking a stimulant alternative at the time for my ADHD. It transpired that almost all ADHD medications are vasoconstrictors. I was taken off them. It took around eight months for the Reynauds to go.

 

[Rachox]

It transpired that almost all ADHD medications are vasoconstrictors

Your symptoms sound very similar to mine though only really affecting my toes and without the ‘white stage’. I will check my meds and see if any of them are vasoconstrictors, though I haven’t started anything new lately. Always interested to look into possible causes myself.

Edit for typo

 

[Melgar]

@Rachox I had no idea about vasoconstrictors. I can tell you Reynauds is a painful condition. It's worth checking your meds just to rule it out.