Type 1 and hypertension

[Andrew2018]

Been type 1 over 30 years, been trying to control hypertension for some three years. The medication went past a tipping point resulting in hospitalisation twice for hypotension that resulted in collapse. Have had the medications significantly reduced, which has caused a violent swing the other way into hypertension, worse than it was at the beginning. I now get regular evening and overnight high BP up as far as 200/100, technically a hypertension crisis. Given the heart risks with diabetes alone, this is highly undesirable, but the medics seem very coy on the subject. Anyone else been there and got the tee shirt ?. It's seriously worrying me to be honest.

 

[EllieM]

Hi @Andrew2018 I've been T1 since age 8 (1970) and went onto drugs for hypertension around 1990. In retrospect I wish I'd tried harder on exercise and weight then, but the drugs have kept me level for the last 30 years, with only occasional changes in meds (up and down). And I still haven't needed treatment for my mild background retinopathy and my kidneys still work, so I guess the bp meds are working in that respect.

So I'm a long term bp med user but I haven't had wild oscillations like you.

What do your medical team say about this though? Have they tried you on different bp meds rather than just changing the dose. I take it exercise and weight loss (if you needed to lose weight?) have made no difference?

 

[Andrew2018]

Hi @Andrew2018 I've been T1 since age 8 (1970) and went onto drugs for hypertension around 1990. In retrospect I wish I'd tried harder on exercise and weight then, but the drugs have kept me level for the last 30 years, with only occasional changes in meds (up and down). And I still haven't needed treatment for my mild background retinopathy and my kidneys still work, so I guess the bp meds are working in that respect.

So I'm a long term bp med user but I haven't had wild oscillations like you.

What do your medical team say about this though? Have they tried you on different bp meds rather than just changing the dose. I take it exercise and weight loss (if you needed to lose weight?) have made no difference?

Different drugs were tried, and was at the point where GP had to hand off to Cardiology in the hospital. They are being slow. The last episode that saw me admitted, the Dr stressed I'd be followed up in three weeks at the specialist unit in another hospital. I checked with them, they knew nothing and bounced it back. Chased the first lot, and the Consultants Secretary failed to even read the notes properly, stating no time on the follow up and didn't even know I'd been in twice in 14 days !. Trouble is, you cannot get round the Secretary to find out whats really happening, and the last person they talk to these days is the patient. If I phoned 111 I'd be told to seek urgent help, makes you laugh. Been looking into "pulse pressure" the difference between systolic and diastolic, a difference of 60 is regarded as serious, and theres me with 80 to 100. Not good.

 

[Grant_Vicat]

Different drugs were tried, and was at the point where GP had to hand off to Cardiology in the hospital. They are being slow. The last episode that saw me admitted, the Dr stressed I'd be followed up in three weeks at the specialist unit in another hospital. I checked with them, they knew nothing and bounced it back. Chased the first lot, and the Consultants Secretary failed to even read the notes properly, stating no time on the follow up and didn't even know I'd been in twice in 14 days !. Trouble is, you cannot get round the Secretary to find out whats really happening, and the last person they talk to these days is the patient. If I phoned 111 I'd be told to seek urgent help, makes you laugh. Been looking into "pulse pressure" the difference between systolic and diastolic, a difference of 60 is regarded as serious, and theres me with 80 to 100. Not good.

 

[Grant_Vicat]

Hi @Andrew2018 I would advisie you contact the hospital PALS system immediately. They can get past any lousy secretary easily. Look up your Hospital Website and find the search button. Just type in PALS and write what you have written here in essence. Best of luck!

 

[AndBreathe]

Different drugs were tried, and was at the point where GP had to hand off to Cardiology in the hospital. They are being slow. The last episode that saw me admitted, the Dr stressed I'd be followed up in three weeks at the specialist unit in another hospital. I checked with them, they knew nothing and bounced it back. Chased the first lot, and the Consultants Secretary failed to even read the notes properly, stating no time on the follow up and didn't even know I'd been in twice in 14 days !. Trouble is, you cannot get round the Secretary to find out whats really happening, and the last person they talk to these days is the patient. If I phoned 111 I'd be told to seek urgent help, makes you laugh. Been looking into "pulse pressure" the difference between systolic and diastolic, a difference of 60 is regarded as serious, and theres me with 80 to 100. Not good.

Have you worn a 24 hour monitor to look at your BP activity throughout that period? Used by someone who knows what they are doing those can help highlight if your BP is fluctuating wildly or starting low, ending up high (or whatever) through the day.

I took part in some research into T2 cardiac health, which included that test. It identified that I was overall running a bit rich. Didn't and doesn't help that my white coat syndrome can be quite dramatic, which can also cloud the picture.

As a matter of interest, when do you take your BP meds, and is there a time of the day when you are more likely to be hypotensive? Like all meds, some folks can be very sensitive to them, in biochemical, by BP symptoms or the more typical rash sort of thing.