Poor Circulation- does anyone else ha... - Atrial Fibrillati...

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Poor Circulation- does anyone else have this issue?

Crystalbowl profile image
31 Replies

I have been having issues with the circulation to my hands and feet for a couple of years’ now. I only see my feet before I get dressed in the morning and after I undress in the evening but at those times they always look a very unhealthy shade of purple. My hands vary throughout the day and sometimes look normal, sometimes various shades of red-purple and sometimes white and feel ‘dead’. I have not seen my Cardiologist since before the pandemic started but I am under the care of the GP of the local Community Cardiac team. I had a CRT pacemaker implanted in October 2019 and I take a variety of meds. The Cardiac GP has been changing my meds. I started off on Bisoprolol and had a couple of others I can’t remember now and have been on Nebivolol for a while starting at 10mg. These changes did not help. I was also started on Entresto (now on full dose) and Dapagliflozin and take 6.25mcg Digoxn plus Fuorsemide and Spironolactone. The dose of Nebivolol has been gradually reduced to see if this would help until I am not taking any at all at the moment but it has not helped. Even in this hot weather it is a problem. For the last two winters I have had problems with chilblains despite buying warm socks, sheepskins insoles for my shoes/boots and a variety of warm gloves. The Cardiac GP rang me yesterday to see if stopping the Nebivolol had helped and I had to say it hadn’t so he wants me to start taking it again at 2.5 mg and presumably building back up to 10 mg. He is referring me to another GP to see if it is not heart related but there is some other explanation. Just wondering if anyone else has this issue and what, if anything, has worked as I dread what it will be like again this winter. I never had this problem until after a I was diagnosed with HF. I also have permanent AF which is largely asymptomatic.

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Crystalbowl
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31 Replies
BobD profile image
BobDVolunteer

Last winter I suffered chillblains for the first time since I was a child in the late forties (bad winter in '47). I have yet to discover why but suspect may be due to BP being at lowest level for many years.

Crystalbowl profile image
Crystalbowl in reply to BobD

Thanks, Bob. My BP is pretty much in the normal to a bit under range 103/64 just now on my smart watch but was around 120/? when I was in A &E recently. Will ask about this as a possibility if I ever get another GP appointment although would have thought Cardiac GP would have considered this already. I survived the 1947 winter too but too young to remember. However, I do remember repeatedly being warned as a child not to get my legs and feet too close to the fire because of chilblains but don’t remember ever having them then. No central heating then!

BobD profile image
BobDVolunteer in reply to Crystalbowl

Mine is down at that low level as well and sometimes lower. Anything under 130/70 is low for me. I am hoping to discuss with GP and reduce meds as I also suffer pre-syncope at this low level and have to be very careful jumping out of a chair or I am likely to be on the floor by the time I get to the doorway if I don't head butt the door frame first. lol

Crystalbowl profile image
Crystalbowl in reply to BobD

Yes, I have that too normally. It is hard to get out of the habit of thinking you can just jump up out of a chair and go about your business immediately although, at the moment, I also have a recent back injury so getting out of a chair or bed is not easy.

RoyMacDonald profile image
RoyMacDonald in reply to Crystalbowl

1947 was a great year for snow, I had loads of fun making a giant snowman. Still have a photo of it that my Dad took. Yes, I did get chilblains though, because I ignored all the parental warnings.

baba profile image
baba

Could it be Sjogrens?

nhs.uk/conditions/sjogrens-...

Crystalbowl profile image
Crystalbowl

Thank you for your reply Baba. I have followed the link you gave but it doesn’t seem to relate to circulation. I do have dry eyes though.

baba profile image
baba in reply to Crystalbowl

So sorry I must be confused this morning, I meant Raynaud's syndrome!

nhs.uk/conditions/raynauds/

Crystalbowl profile image
Crystalbowl in reply to baba

Thank you, baba. Reynaud’s syndrome has been suggested by some people as a possible cause and when I next get to see a GP, I will add it into the equation. I’m not sure if it is because whatever it is happens most of the time on and off not just in cold weather. I do feel the cold and am generally well wrapped up but even when we have been having very hot weather it still happens such as this morning when I went out for a short walk with my partner. We were holding hands and swapped sides at one point and he commented that my hand was cold and then when I looked at my other hand it was bluey-purple. I was wearing 2 tops plus a light jacket and the temperature was about 18C so hardly cold.

Becksagogo profile image
Becksagogo

Oh bless you. I know that feeling. My blood pressure is extremely low (it rarely exceds 90 top line) and i am always cold. My feet especially are mottled blue so I tend to wear socks to hide them. I have been known to wear fingerless gloves whilst using the computer! And in the summer when everyone else is nearly naked , I am always in jumpers and trousers. My mother was the same and I feel awful because I was always chastising her for wearing so many clothes and having her fire on in summer.

Crystalbowl profile image
Crystalbowl in reply to Becksagogo

Thank you. Yes, I feel a bit silly going about with so many clothes on when other people are wondering about in sandals, shorts and T-shirts. My blood pressure is not as low as yours but it is lower than it used to be which is probably due to meds. I have fingerless gloves too for use in the house.

Auriculaire profile image
Auriculaire in reply to Becksagogo

Have you had your thyroid function checked recently? Being cold all the time even in summer is a classic symptom of hypothyroidism.

Becksagogo profile image
Becksagogo in reply to Auriculaire

I had my thyroid checked after being on Amioderone and take a daily dose of levothyroxin. It may be worth me talking to my GP. Thank you for your advice. I'm so preoccupied with heart problems that I blame everything on that!

Auriculaire profile image
Auriculaire in reply to Becksagogo

Not everybody finds their thyroid symptoms resolve on Levothyroxine alone. I find I feel much better with a very small amount of T3 as well. I have gone back to taking some after 6 years without - following my afib diagnosis - and I feel much better.

Becksagogo profile image
Becksagogo in reply to Auriculaire

Pardon my ignorance but what is T3?

Auriculaire profile image
Auriculaire in reply to Becksagogo

It's the active thyroid hormone - liothyronine. Levothyroxine T 4 is the storage hormone. Our thyroids - well healthy ones- produce T4, T3, T2 ,T1 and Calcitonin. T4 has to be converted to T3 to act on the tissues. If people do not convert well or if the sick thyroid is not producing enough T3 then symptoms will occur despite the TSH being "normal" . Levothyroxine treatment only -the norm - leaves many patients still feeling unwell. They are usually dismissed by the medical profession as imagining it or offered anti depressants. If you go on the health unlocked thyroid forum you will find lota of info about this.

Becksagogo profile image
Becksagogo in reply to Auriculaire

Thank you for this. Funnily enough I am tired all the time and I was being treated for depression.

Auriculaire profile image
Auriculaire in reply to Becksagogo

Do you know what your last TSH was? Often if it is within the reference range docs will say you are fine but this is very broad. You can feel very different with a TSH of 1.5 and 4.8 ( both could be in reference range) . Also ranges vary between labs.

Crystalbowl profile image
Crystalbowl in reply to Auriculaire

Thank you for your replies. I am not aware that my thyroid function has been checked recently (if ever). I do seem to have a lot of blood tests for one reason or another but I do find that staff are not seem keen to be clear about what the tests are fot or to report findings other than ‘OK’ unless they aren’t. I have asked for copies of reports at times which seem to be given reluctantly even though we are entitled to them but they are not easy to understand if you have no medical training. I will add thyroid to my list of possibles for whenever I get the opportunity to see someone about this issue.

Auriculaire profile image
Auriculaire in reply to Crystalbowl

There are websites which explain for laymen how to read blood test results. I would never accept ok . I was told ok 27 years ago because my GP in the UK did not know how to read a thyroid panel and I went undiagnosed for another 7 years. I want to see the figures for myself. Luckily here in France your blood test results are not kept just for the doc to look at. The lab sends you a copy in the post . Unles it is something very unusual that is being tested you get the results the day after the blood test.

Crystalbowl profile image
Crystalbowl in reply to Auriculaire

Yes, my daughter lives in France and I know she gets any information and I had to be treated following a fall whilst I was visiting her and I was given the X-rays and a report. The same when I ended up in hospital in Madeira a couple of years’ ago, I came home with an assortment of X-rays and reports. One of my friends who does training in the NHS gets incensed when I tell her how hard it is to get information and says she is always stressing that it is the patient’s right to have any information.

My Reynaud syndrome was aggravated by Bisoprolol and I now take Verapamil instead. The circulation is all about movement. I was told to rub the back of my hands when fingers go white, and have found that doing circles in the air with my feet will bring them back to normal colour. Chilblains have been a problem. I used to just wear socks around the house in winter but now wear shoes as well, and pamper my feet with creams every day. Swinging my arms round in circles will also bring blood to my fingers. Keep warm and on the move if you can. Good luck and best wishes.

bassets profile image
bassets in reply to

Thank you for your comments. I hve Reynauds but have never known how to improve the condition.

Crystalbowl profile image
Crystalbowl

Thank you. I was on Bisoprolol and have tried various beta blockers now and seem to have settled on Nebivolol which started at 10 mg. We have gradually lowered the dose and finally I stopped taking it but it didn’t make any difference so I am back on it at 2-5 mg at present but presumably will work back up to 10 mg under supervision. I thought circulation was all about movement too and I do try to get out for a short walk every day if possible but often find my hands get worse. Can’t tell what my feet are doing, of course, but they always feel a bit odd like they are sort of numb. I have been tested for peripheral neuropathy but it didn’t seem to be that. A couple of people have said that when you move the blood goes to the heart and other parts of your body rather than the extremities like hands and feet but don’t know if this is true. I have continued to wear socks and sheepskin lined slippers all through the summer but it hasn’t helped and I have been using cream on my feet. It is frustrating not knowing what what is causing it. I never had this problem before I started taking all the heart meds but the Cardiac GP seems to now think it must be something else rather than my heart/meds.

bassets profile image
bassets

I hope you can get to the bottom of this and feel happier when you do. Best wishes.

Crystalbowl profile image
Crystalbowl in reply to bassets

Thank you. I hope so too. I will try to remember to report back if I do as it might help others.

Cavalierrubie profile image
Cavalierrubie

I have low blood pressure as well and really feel the cold which is obviously due to circulation. I can also get pins and needles in my hands and feet. I can have a sweater on when everyone else is in a t shirt and they think I am crazy. Seems like you could do with a "hot date" lol. Hope you soon get helped with this.

Crystalbowl profile image
Crystalbowl in reply to Cavalierrubie

You too!

Cavalierrubie profile image
Cavalierrubie

Me? I am too old to remember what they are! All the best.

JK5AEO profile image
JK5AEO

This is the one side-effect my pharmacist warned me about when I went onto Bisoprolol.

Crystalbowl profile image
Crystalbowl

Thank you, JK5AEO. I was on Bisoprolol when I started having these problems but we have tried about 4 different beta blockers now and it has not cleared up. Has the Bisoprolol had this effect on you?

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