Diffuse heavy vascular calcification!

[Shiv Gaffney]

Wow what a mouthful!! Have been diagnosed with the above and looks like it is arterial recently in both my wrists. My GP had never hear of it before(!) and is following up with consultant but from my research into very little information out there I know what it is, see it possibly can be a complication of T2D and CKD; as I am T1D and don't have any kidney issues to date I am a bit confused!

Have any other T1D been diagnosed with this? And what are treatments if any? All I can find is a vitamin K2 supplement which may help.

Any help here appreciated.

Siobhan

 

[mikeyB]

Hello Siobhan, welcome to the forum, it’s a great place for hanging around and getting answers to questions, but...

I’d be amazed if anyone else on the forum has this condition, because it is so rare, even in CKD. I assume it is medial calcification- that is, in the muscular bit of the artery rather than the internal surface. It is sometimes due to a genetic deficiency of a particular enzyme, though if it is it usually presents in folk a bit younger, in their twenties. I wasn’t aware of an association with diabetes of any flavour, but that’s just me, not the fact. I’m not in the least surprised that your GP has never heard of it, though. It’s one of those conditions you remember for medical finals, then never see it in a full career.

I think that all you can do is follow what the consultant says as far as treatment goes. Manipulation of the serum calcium can help, and, as you say, Vit K can too, but I don’t know of any definitive therapy, sorry.

I hope your consultant can find the cause, and get you on treatment that can halt the progress, so let us know how you get on. Like diabetes, treatment will be a long road, I suspect. Best of luck.🙂

 

[Shiv Gaffney]

Hello Siobhan, welcome to the forum, it’s a great place for hanging around and getting answers to questions, but...

I’d be amazed if anyone else on the forum has this condition, because it is so rare, even in CKD. I assume it is medial calcification- that is, in the muscular bit of the artery rather than the internal surface. It is sometimes due to a genetic deficiency of a particular enzyme, though if it is it usually presents in folk a bit younger, in their twenties. I wasn’t aware of an association with diabetes of any flavour, but that’s just me, not the fact. I’m not in the least surprised that your GP has never heard of it, though. It’s one of those conditions you remember for medical finals, then never see it in a full career.

I think that all you can do is follow what the consultant says as far as treatment goes. Manipulation of the serum calcium can help, and, as you say, Vit K can too, but I don’t know of any definitive therapy, sorry.

I hope your consultant can find the cause, and get you on treatment that can halt the progress, so let us know how you get on. Like diabetes, treatment will be a long road, I suspect. Best of luck.🙂

Hi Mike, thanks for that, someone who knows a bit about it is a rarity!

 

[trophywench]

Hi Shiv - can't help but just wanted to tell you Mike was a GP - and maybe that was a question in his finals? LOL

 

[mikeyB]

Aye, I was a GP, but my later job in War Pensions gave me a wider knowledge, specifically in the causation of conditions. I honestly can’t remember what came up in finals, but at least they set me loose on the world

 

[Shiv Gaffney]

Aye, I was a GP, but my later job in War Pensions gave me a wider knowledge, specifically in the causation of conditions. I honestly can’t remember what came up in finals, but at least they set me loose on the world

Yes Mike did wonder if you were a GP with your knowledge of this condition as I am drawing a blank with people who have even heard of this condition (never mind heard about it!) at the moment both in Ireland (where I am based) and the UK. I have an appointment with my consultant this week (but he is for my Dupuytrens - inactive at moment) so not sure if he is the right one as GP has only talked to doctor/radiologist who diagnosed me from x-ray and they are trying to find suitable consultant! Other than very mild retinopathy (which also has been dormant for the past 5 years) my complications seem to be very minimal and I was hoping this wasn't a complication of T1 but I will let you know what consultant says. Thanks again.

 

[mikeyB]

There’s probably only one or two consultants in the whole of Ireland who have any experience of the condition, I suspect. The consultant you will be seeing will probably get a glazed look in his eyes when you tell him the diagnosis.

Although I’m currently living in Scotland my ancestors are County Mayo, so my blood is stirring over the Brexit border issue😡

Anyway, I’ll tell you a story about X-ray diagnosis. When I was working in a hospital in Kent, we’d admitted a very posh old lady with a chest infection. Looking at chest X-Ray, the consultant pointed out the calcified atherosclerosis in the aorta. I looked at the X-ray and pointed out the calcification was medial. “that’s medial”, said I, “and that’s syphilis”. Blood tests showed that it was, too. Further enquiry revealed her late hubby was a wartime Army Captain. Naughty boy.

We never told her the diagnosis, of course.🙄

That doesn’t cause diffuse vascular calcification, you’ll be pleased to hear

 

[Shiv Gaffney]

Great story Mike and thanks for the clarification re: causation I live in Galway but originally from a border county and Brexit going to have a huge impact there on people's lives - interesting times ahead for them

The lack of information is driving me mad and of course leading to worry. I am naturally a very positive person but this is causing some concern as I am a self employed secretary and hope my livelihood won't be affected by it.

Another issue I have come up against in recent times is the lack of mental health support for T1Ds here in Ireland. I am on a waiting list for over 2 years here in the west but was told that there was only one child diabetic psychologist in Galway and nobody specialising in diabetes for adults - great for newly diagnosed kids/teenagers but what about us adults and specifically vets who are beginning to experience the complications. I always got on with diabetes - no choice in the 70/80s in Ireland and definitely lived life to the full i.e. not exactly a great diabetic in my teens and 20s - but this really annoyed me😡 What is the situation in the UK with mental health support for diabetes?

Siobhan

 

[trophywench]

The situation is as an adult you are fantastically fortunate if you can get MH support anyway unless you are VERY ill - might wait years for counselling and I have not heard anyone on forums ever say any Psych help they might have had has had any expertise with Diabetes patients - in fact usually clueless really other than generally being aware that D places 'some sort' of mental onus on us but having no idea how/what/when.

I do know that help for other specialisms can be difficult to come by in NI generally though because the 'centres of excellence' are so very thin on the ground and so very widely spread geographically.

Scotland is somewhat similar geographically if eg a newborn baby needs an SCBU - BUT - the Scottish have a far more forward thinking government than do England or NI and spend more on healthcare so they seem to have a slicker system, more joined up thinking and modern ideas and treatments, than us. Patients do often have to travel a long way to the point of delivery of whatever it is - but if you know that service will be ready and waiting - then its worth the journey because you get what you need when you do arrive.

(I'm sure it can't be as bad as you and I think it is though Shiv, cos obviously Our Jeremy couldn't possibly have won his recent award ........)

 

[mikeyB]

Fortunately for Shiv, Jenny, Galway is in Eire, free from the clutches of Mr Hunt. I blame the Church for the paucity of diabetes mental health services in Ireland, but then I blame the Catholic Church for most things, including me.

Personal question, Shiv. If you’re a Galway girl, do have black hair and blue eyes? Or shouldn’t I be believing songs....🙄

 

[Shiv Gaffney]

Jenny/Mike

Thank you both for you replies. I do not know your minister but I am sure he is just about as adequate as the one we have here and his predecessors😡 Enough said.

Re: the mental health support I had actually got off my bandwagon for a while until I read this recently https://beyondtype1.org/diabetes-impacts-mental-health/ and it reignited my interest - but note this guy is based in the States.

Don't get me started on who is to blame for the state of our country but the Catholic Church does have a lot to answer for!

Forget those songs Mike - as I keep telling my teenage daughter they are all so make believe!! Or maybe it is just because I am not 100% a Galway girl🙂

 

[mikeyB]

Aye, I’ve got three conditions that notoriously affect your mental health, so I just get help from the Community Psychatric Nurse who wasn’t surprised to see me, after she learned that. Great help, too. Well, her and Venflaxamine.

And thanks for telling me those songs are make believe. I’m devastated.

 

[trophywench]

Oh blast - we did all about glaciers, ox bow lakes and geology in what were billed as being Geography lessons at school, but I do tend to know where a lot of towns in GB are situate, having had to write a lot of letters to household policyholders. It's not really a lot of help knowing whats in wherevershire though, when you can't place the shire very well !

Which New York male voice choir was it that wasn't singing Galway Bay?

 

[Shiv Gaffney]

Just to let you all know that apparently this is a rare complication with diabetes - seldom diagnosed but can happen in wrists and ankle joints - reason undiagnosed I was told today was because they don't generally x-ray those parts unless there is something broken!! My wrists have very visible lumps on them (a couple on both) so I find it hard to believe that people would ignore these on any joints but hey that is what I was told by a diabetic nurse today passing on the word of a endo consultant... So who am I to question?? Well I actually have an appointment with another consultant at the end of the week so looks after my trigger finger and Dupuytrens and will see what he says.

A question for you Mike - you said "I assume it is medial calcification- that is, in the muscular bit of the artery rather than the internal surface" - I haven't been told - is this obvious from x-ray or how do they find this out? Want to know so I am well armed before meeting the hand guy! 😉

Thanks again.

 

[mikeyB]

X-rays aren’t very good at showing soft tissue. In the aorta you can see the cavity of the vessel, and the lining of the artery as a grey shadow. You can tell if it is medial calcification because it shows white in the middle of the wall of the artery, rather than on the surface of the lining. I assume it is the same in smaller vessels.

If you want calcified arteries, you want it medial rather than intimal. Medial doesn’t affect the ‘bore’ of the blood vessel.

The diagnosis of diffuse heavy vascular calcification automatically means medial calcification. If it were intimal, you would have symptoms of much reduced circulation in your hands.

I think that answers any question you have. Now you’ll know more than the orthopod who fixed your Dupuytrens.

 

[Shiv Gaffney]

Thanks a mil Mike - you are an absolute start never mind a mine of information🙂 Can't wait to see his face

 

[Shiv Gaffney]

Thanks for your advice Mike - as you said knew more than the consultant! He had never seen before on wrists and is sending for ultrasound. Says it is not his area, will see result of ultrasound, back to see him in six weeks and then he'll decide what department I should be referred to for it! Couldn't answer what causes it. Also said didn't know about vit K2 but sure "take it, it will do you no harm"! Being referred to cardio and neuro - have had a lot of problems with left arm/hand in the past - rotator cuff surgery, carpal tunnel surgery, trigger finger and Dupuytrens so he is wondering if there is a neurological connection we'll wait and see but thanks to Mike was well armed going to see him

 

[mikeyB]

Thanks Shiv. It will be interesting to see if he does find a specialist, but it is a medical rather than surgical problem. Cardio is a good bet, not for treatment, but knowing someone who might know how to. Nephrologists are more likely to have seen it, but then you don’t have kidney problems.

It’s a bit disheartening being a mystery, been there myself.

 

[Shiv Gaffney]

Yes Mike gathered that is what he thought - mind you he did say that if it was surgical he wouldn't operate there as it was too near the artery and to perhaps look elsewhere - I like direct doctors but his honesty did surprise me!😉

Re: the kidneys - don't have any issues alright (thank God - don't thank him for much I am afraid) but I am participating in clinical research for diabetics on the effects of salt on the kidneys so may pose this question to them when I'm in there next month - thanks for reminding me of that

Have been told in the past that I am a "medical mystery" - that was after admission for a hypo two days before I was due to travel to Mexico over 20 years ago and being told it was so bad that if I was in Mexico there was a 99.9999% chance I would have come home in a coffin... and here I still am hale and hearty (well almost!)

 

[mikeyB]

Aye, Shiv, I can do the hearty bit, but hale disappeared some time back. The day hearty disappears, I’ll be six feet under