fluctuating blood pressure

[muddlemand]

My GP told me to keep an eye on my b/p, but not to get obsessive - she specifically said don't test more than once a day, better to do only 4x per week.. I had the feeling some people end up with so much data that they see minor fluctuations and blow them up into major worries... anyway, I did it the way she said to start with...

I have started on hibiscus as it seems to have a good record for reducing high b/p. I want to avoid a second med being added to the perindopril I've been on for ages. My b/p was stable on it, borderline high but ok, until this year when it has just kept going up despite increasing from, erm, I forget but it went up twice and I'm now on 8mg daily. This after years of staying level. I think it's probably my thyroid doing this, and I'm afraid that if I start on a beta blocker it will be hard to come off it, so I want to bring the b/p down enough to shut my doctor up, until the thyroid problem is recognised.

I tried the hibiscus first (also halved my coffee intake). After about three weeks the b/p hasn't really dropped much. A bit but not much; I think it's starting to drop and then get a high reading. So as an experiment I thought I'd take my b/p a few times a day, and log the times I take the hibiscus as well as how I'm feeling not only physically but mood - to see which it correlates wtih. I know there's a circadian cycle but this doesn't fit my readings.

It's far too soon to look for a pattern properly but I am startled how different the readings have been. Systolic between 124 and 178; diastolic between 77 and 114 (ninety minutes apart). Now the systolic is supposed to vary with activity and stress in an immediate way, but the diastolic isn't meant to. Also, so far it is lower after activity and higher after a lie-down or sitting a long time - though too soon to say that's a real correlation.

I don't know very much about blood pressure, it's difficult to find useful information. In the old days (1980s-90s) they took notice of the diastolic mainly, and the rule of thumb was your age + 100 (I'm 50); now they worry about the systolic. That's the total of what I know, except you can have no symptoms until it's too late. The only way I've heard of b/p fluctuating wildly is after an event such as stroke, while the whole body "resets" itself. I haven't had any dramatic health event this week!

So I'm only asking if someone knows a lot more about b/p than I have ever been able to find out. Asking doctors and nurses has never, ever got full answers. Some are reluctant even to tell you what the reading is, irrational when they know you have a meter at home... but what the reading signifies, that's completely out of bounds for us unqualified patients. Anyone who actually knows, is this fairly normal when monitoring b/p so often?

[Nanaedake]

Have you been diagnosed with a thyroid condition and if so what are your latest thyroid test results?

Low vitamin levels can also cause your heart to be unhappy. Here is some research.

hindawi.com/journals/dm/201...

[muddlemand in reply to Nanaedake]

Thanks for the link Nanaedake, I'll look at that when more awake. I'm getting tests next week, I hope. Requesting them next week. I was hyperthyroid 2012-13 and discharged, feeling symptoms again in the last few weeks/months. Far more history than that! which is in my profile.

My diastolic was always around 70 until my first child was born. Then after a break of two years (lived abroad and didn't have it tested), it shot up to 90. In those days the systolic was more or less ignored. All the health professionals told me not to worry as 90 was still only borderline, regardless of normal for me. It has stayed around 90 all my life, with starter dose (minimum) of meds. So this year is a big change.

I have a feeling I'm on the brink of a big discovery about things that may have been going gradually wrong for a very long time - nutrition, thyroid, maybe adrenals. Kind of exciting.

[muddlemand in reply to Nanaedake]

I've looked at that link now. The potential damage is scary! I'm shocked that it isn't more widely known that vitamins affect the arteries. Joints, and energy generally, is all I knew and I'm sort of medium - not as ignorant as the masses but less well informed than people with an interest in nutrition. (Though I'm beginning to be interested in nutrition!)

Since I'm on insulin I was very interested in what it says there about Vit D. All of them, in fact. And the anti-inflammatory side of things; official I haven't any inflammation, but more and more I think I've had low-level inflammation all over, inside and out, for a long time.

can you explain one sentence?

"associations of lower concentration of vitamin D metabolites with reduced coronary artery calcium prevalence and severity, ... in patients with type 1 diabetes mellitus" - doesn't this mean the opposite of all the rest, ie lower D correlates with fewer artery problems?

[Nanaedake in reply to muddlemand]

The document states, 'There is no consensus on optimal levels of vitamin D in order to provide a beneficial cardiovascular effect, and this will be the aim of future clinical trials.'

However, earlier in the document, it says that, 'In the Whitehall study, the optimal concentration of 25(OH) vitamin D was 80–90 mmol/l and a linear, inverse association of vitamin D level with both vascular and nonvascular mortality was reported.'

Thus, I presume the sentence you refer to, "associations of lower concentration of vitamin D metabolites with reduced coronary artery calcium prevalence and severity, ... in patients with type 1 diabetes mellitus" , read in context with the rest of the paper indicates that it's not beneficial to oversupplement with high doses of Vitamin D if you have diabetes mellitus and there is likely to be an optimal vitamin D level which as yet is not known for certain.

I haven't got a scientific background so I can't assess the information from a scientific point of view but there are other people on this site who can evaluate it.

[muddlemand in reply to Nanaedake]

Thanks, yes, I'm not a scientist either but a linguist (well, was) and so long words aren't a problem. That's probably also why I nitpick about individual phrases! Here I think it hinges on the meaning of 'metabolites' now I look at it again... I'll have a search. If Vit D metabolites are a bad thing, it does make sense after all.

[Nanaedake in reply to muddlemand]

As far as I understand it, metabolites are the various guises vitamin D assumes as it goes through the process of being extracted and changed into hormones the cells can utilise for various processes. Sorry, not a scientific explanation.

[muddlemand in reply to Nanaedake]

That's exactly the kind of explanation that suits me. I did google and didn't get far with the definition! Thanks

[EffieGee in reply to Nanaedake]

I know a bit about this from one of the FB groups I'm in. They recommend that Vit D3 is taken along with Vit K2-Mk7 to pull calcium away from the soft issues and into the bones where it belongs. I was doing this (and other supplements) and feeling massively better for 6 months into 2017 then had a TIA/stroke in Sept so abandoned all of it except, latterly, CBD oil as I rate that highly. I couldn't easily find a professional source in the UK who would advise on interactions especially between the new anti platelet drug, increased statins etc and CBD, let alone the other vitamins and supplements I was taking. I liked the sound of Dr Myhill in Shropshire but she's not taking on any more patients. I just found a clinic in the US who will consult by Skype to advise what's safe and what's not so I think I'll be doing that. If I've already posted this before, pse excuse, my memory's shot.

[Nanaedake in reply to EffieGee]

Yes, the usual recommendation on this forum is to take vitamin D3 along with magnesium and K2-MK7.

[EffieGee in reply to Nanaedake]

Magnesium was part of my protocol too, glycolate in the morning and malate before bed. It all got screwed up after the stroke meds and I haven't got back to it yet. Plus taurine, NaC, serrapeptase and the good old pharms.

[greygoose]

So, what is your thyroid status? Have you been diagnosed with under-active thyroid? High blood pressure is often a symptom of low T3.

[muddlemand in reply to greygoose]

Just about to be tested, but as I've just replied to Nanaedake, I was hyper 4-5 years ago. I suspect T3 has been falling the last few months; we'll see.

[greygoose in reply to muddlemand]

OK, so I hope they'll be testing your antibodies.

[Jazzw]

High blood pressure and elevated cholesterol are both under active thyroid symptoms. So I think it’s more than possible you have hypothyroidism now, rather than hyperthyroidism. I reckon it’s quite likely you have Hashimoto’s, rather than Graves. Hashimoto’s, in its early stages, can cause hyperthyroidism.

[muddlemand in reply to Jazzw]

OK, I see... except that my b/p and cholesterol have always been borderline, just a bit higher than they're happy with, as long as I can remember. Long before I had the hyperthyroidism. Would that still make sense?

[soppysokes]

a reasonable way to take BP is 3 times x3 times a day leaving a few minutes between each reading over a 7 day period, then disregard the 1st of each 3 readings and take an average of the rest at the end of the 7 days. If poss sit quietly for few minutes before each reading.BP will always fluctuate,sometimes quite scarily but the average reading gives a fair assessment. Then if still concerned speak with GP he has better picture with those averages available.Normal diastole shouldn't change like the systolic reading can -usually movement in it is a far smaller range. It can give an indication of heart health but needs to be assessed properly and other conditions, age ,current medications etc are relevant. a diastole peak of 114 is something to watch - pulse pressure also-the difference in the two figures - but don't obsess over figures that can make them worse lol.

[muddlemand in reply to soppysokes]

Thanks - looks like something swallowed my reply to you! To clarify, you mean taking three readings, x3 per day - that is 9 in one day - then ignoring reading 1 of each cluster of three, and averaging all the others. That is averaging 6 per day. Have I got that right?

I agree, I'm unhappy with these high readings but what really bothers me is why my b/p has started gradually going up during 2017, when it's been hovering around borderline for 20+ years. Way back, it went up suddenly from always being around 70 (diastolic which is all they looked at back then) to always being around 90, and at the time I was told it was still in recommended range so forget about it. No concern with abnormal for me. Ever since, normal for me has been around 90 until this year. So I want to know what's pushing it up - not just suppress it.

I won't obsess, more inclined to ignore and hope they forget to follow up - but I know better and I do want to solve this mystery.

In all the years of b/p and pulse rate (with diabetes they're checked regularly), I've never heard of pulse pressure.

[soppysokes in reply to muddlemand]

Hi muddle and yup that's right 3x3 and disregard 1st reading of each. Sit calm for couple of minutes only before starting and leave 2/3 mins between the readings. Hope you get to the bottom of the cause and that it's nothing too problematical.

[muddlemand in reply to soppysokes]

Thanks! I'm hoping it's the thyroid actually - not that I want yet another condition, but what I want is one that's treatable. I want everything else that I'm used to, all the untreatable things, to turn out to be the thyroid after all and therefore treatable. And then I wouldn't care how much hassle it is, or how expensive, or how many treatments I have to take, because by doing all those things I'd be able to rejoin real life and earn money and have a social life and all the rest of it instead of living with the discipline of a professional athlete just to keep up with groceries and laundry and barely keep up wtih online friends. The possibiliyt of it all being thyroid related has got my hopes up.

[helvella in reply to soppysokes]

Also, neither talk nor be talked to.

[muddlemand in reply to helvella]

You mean during the b/p test? Had a laugh, I just read that sentence but hadn't taken in which thread this was in. I thought WTF?!

[helvella in reply to muddlemand]

Yes - while doing a BP reading!

[silverfox7]

Back in the day when I worked with medical students we always suggested they took three readings and then averaged them. In fact my BP machine can be set to do this automatically.

Your actual BP can change enormously on each beat. That doesn't mean anything is wrong but that's just how it is. We used to show our students a film presentation that showed this. So just sitting quietly can make big variations. By telemetry the film looks at everyday situations and shows how quickly things change and how lengthy the recovery can be! So lookedat such thingsxlikrcthecals eakingvyou up. Walking out of a sauna into a cold shower though we also joked on that if we saw a front view and had the audience wired up then those readings would be interesting! There was also a comparison with a horse and rider taking in a fence! Approaching. Oth had increasingly high BP but as they sailed over the top the horse as soon as two legs were on the ground it's BP felt like a stone but the riders fell o vet time and distance. I also when eiredxup to a football match one night. I had a buzzer to press when something exciting happened like scoring a goal or a near miss but it was t an exciting match and my only BP rise of note was zipping up my newly washed jeans before I left home!

So get used to getting your BP taken. I always.do it for a week when I know it's imminent but my GP has given up on me know! From time to time she gives me a chart to fill out for the week. She now understands that I get white coat syndrome plus I've realised I'm not a horse and never will be so it's heaps better when thecpressure is off and doctors aught to be aware of this!

[muddlemand in reply to silverfox7]

Really interesting examples (esp. the jeans!). I have always known the systolic shoots up and back down according to what we do and how stressy we are, but is this the diastolic as well?

I don't have white coat syndrome. The odd thing is that all my life, when my b/p is done at the diabetic clinic it's fine. It's only other clinics, at the GP's and at home that any glitch will show up. At least five different diabetes clinics as I've moved around over the years, still the same. If I felt more at home there than other medical settings, I'd put it down to that, but in the old days I felt I was only there to get a telling-off about my diab. control whereas now I feel among friends (with a team who believe I'm doing my best, which was always true, instead of stronger guilt trips until I knuckle down).

Erm... I am used to having my b/p taken.

That's how I know that the gradual increase during 2017 is completely out of character for my b/p. I don't agree with the GP that it's "just one of those things" as time passes. It would have started as time passed, in that case, but it's only started this year. I am perhaps perimenopausal (nothing to show for it except my skin's a bit saggier) but if it's that, I want to know how and why. Not just address the symptom, which is the b/p.

[EffieGee in reply to muddlemand]

My GP told me that higher reading were normal for my age group (69). My post TIA average was 132/82 and he was happy with that. There are fluctuations. I record BP and HR daily to try to avoid as many meds as possible. I'd prefer to use natural methods where possible and there are too many interactions to be aware of and avoid even between natural supplements and pharma.

[muddlemand in reply to EffieGee]

I'm with you on avoiding meds! Coming off statins was the best thing I ever did (not counting having kids and ditching the husband). As for interactions, WebMD has a good tool for checking for those. I also like that site for info on all kinds of supplements etc.

I meant to ask you about the TIA. You said "what was termed a TIA". Do you think it wasn't? I ask because my stroke was a "little" one and I always have to tell people it was NOT a TIA, and often I feel they don't think I know what I'm talking about (the medical ones among them). But the definition of TIA includes no effects lasting more than 30 minutes, or maybe 60 minutes but basically, nothing that lasts. Whereas the physical/motor effects from my stroke(s), minor though they are, are still around nearly 12 years later so it was NOT a TIA. And I knew what aftershocks were like, mini-attacks some quite big, some that took two weeks to get over - this wasn't like those.

I say "stroke(s)" because they insisted I only had the one. I don't agree that the second, over a year later, was just an aftershock as they said. It hit the other arm for one thing! And I had something very like one, much much smaller, ten years before - but that was during surgery (c/section, I was awake) and lots of things were more urgent to deal with, and I never followed it up. My speech just went odd and if movement was affected I couldn't tell as I was just lying there. Only later when I had similar attacks, I recognised the odd "spaced but unworried" feeling. Given the whole history, including stuff that doctors ignore such as mood shifts and "weird woowoo feelings", I think the whole thing is an ongoing Something rather than a one-off brain event.

Anyway. I burble on, sorry. Maybe yours was a TIA.

[EffieGee in reply to muddlemand]

I use WebMd and Drugs.com, if I'm feeling intellectual (kidding) I'd look at the Flockhart table and try to work from there. This TIA business? The neuro immediately said it was a TIA, that was before he'd done anything other than given me visual and walking tests. I think it was more than that, as I've told my GP. I also suspect it wasn't the first one though previous events might well have happened when I was sleeping. The unbalaced gait was a pointer though I didn't know that at the time, early in 2017. So 'everyone' is saying TIA, therefore no after effects. CAT scan normal, echo normal, BP ok, bloods? not sure yet, waiting for results, Holter? it switched off an hour through the period so has to be done again! I don't feel or act normal. What I've had was not a classic TIA as described, I don't care what the medics say. 3 months along and I'm still getting 'after effects', including some really weirdly terrifying events in the first 4 weeks. Your term 'aftershock' is spot on. I wouldn't be surprised if this, for me, is all part of an undiagnosed and life long pattern of ill health. (I have been looking at Hughes Syndrome). Having to deal with an unresponsive and casual neuro, at last my GP is talking about asking him for an MRI - and if he doesn't agree, then I'll get a private referral. I'm sorry but glad in a way that you have a similar exerience. I don't feel quite so alone. And sorry to go so off track. I think it's linked. I still have an underactive thyroid!!

[muddlemand in reply to EffieGee]

I too have a feeling my stroke or strokes (or whatever!) were part of something that's been going on for decades. You are NOT alone.

I find that if a stroke is "small", everyone professional and otherwise assumes TIA and I wonder if even all professionals know the actual definition. Hughes / antiphospholipid syndrome was ruled out in my case, they tested at least three times for it, because I've lost pregnancies and other things that suggested it. I was lucky, I had the C/T within an hour of arriving at hospital (mind you, that was 24 hours after the event) and then an MRI five days later - very privileged! - because I was only 38, and because my neurologist wasn't in fact a stroke specialist but in geriatrics so I was a real special case for her. I wasn't in the stroke unit, someone told me I had the only bed available in the whole hospital, and when it's serious it's certainly useful to be unusual - they're far more interested! But on the other hand, for that reason the usual protocols were missed when I left hospital, and I had no follow-up, zero rehab. I finally got myself back to neurology last year and had a lot of cognitive testing, and now they're baffled... the story goes on.

Luckily I like a learning curve.

Do PM me you want to wonder "out loud" about anything, maybe I know something or some groups that you haven't been told about. Definitely get that MRI. There is also something with various names ("something malfunction" and others) which doesn't show up on scans at all - I knew someone who had apparently a stroke, no lesions seen, but walked with a stick for a week or so and needed intensive physio rehab to get back to work. The brain is Here Be Dragons, very little is known at all.

[EffieGee in reply to muddlemand]

I've had a productive few hours here with an avalanche of info stroke-wise. I'll PM you. It might lift the veil about this part of our medical problems and history, useful to add to the knowledge bank in any case. It spurred me to decide to email the neuro tomorrow to ask for that MRI that he owes me. Thanks for your note, Here Be Dragons indeed!

[muddlemand in reply to EffieGee]

This is great, feels like two heads are better than one. (Even if two brains are twice as zapped, lol.)

[EffieGee in reply to muddlemand]

Zapped is exactly the right word

[SlowDragon Administrator]

Propranolol slows Thyroid uptake/conversion. Plus tends to lower magnesium. However you must NEVER just stop taking it, it has to be reduced incredibly slowly over months

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP. Unlikely to get FT3

Private tests are available

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results

[muddlemand in reply to SlowDragon]

I've looked into the private tests but I have very low income, so that's a last resort. (But I'm fine with finger prick, I test my blood sugars all the time.) If I get no joy from the GP - she's forced to sign off the T3 and T4 which the consultant advised when I was discharged in 2013, but if she doesn't want to ask for any more - I can't imagine I'll get her to request that many tests. Which one or two should I insist on, if it comes down to arguing over each one specifically? I mean, if I can't get *full* evaluation, what's a good(ish) compromise?

I can't swot up the biochemistry in time for this conversation on Monday!

My question about "as early as possible in the morning" is - if 11am is the earliest possible, does that make the tests meaningless? Is it not worth it at all? I'm not safe driving until at least three hours after I wake (sacrificing 1-2 days to recover from the scramble to get up). I can fast if necessary, but not get to the surgery. I'm not eligible for the community nurse to come out.

[muddlemand in reply to SlowDragon]

Just found out that I was using the wrong name. I'm not on propranolol, it's perindopril. So cancel that question!

[Hidden]

I just take mine once per week.

My doctor here in France is the only doctor I know that takes blood pressure in both arms which is correct.

[muddlemand in reply to Hidden]

I checked which arm to use, because the leaflet with the b/p meter said so. I'd never heard of that before! Weekly would be fine for a normal situation but I have been told to do a series of readings specifically because my b/p is behaving oddly in recent months.

[Hidden in reply to muddlemand]

The monitor I use at home reads only the left arm. I understand regarding you BP I hope that it sort out for you.

When I had both arms read the first time I goggled it an the article stated that both arms should be tested but most doctors don't bother.

My doctor is very thorough but still US when it comes to the thyroid.

[muddlemand in reply to Hidden]

How can a b/p cuff only go round the left arm?

What the leaflet said was test both arms a few times, and see which gives higher readings on average, then go on using that side.

Nurses and doctors always use the arm nearest the table, or the one that hasn't just been stabbed at the elbow for bloods.

[Hidden in reply to muddlemand]

The cuff that I use at home states to be used on the left arm. When doctors test both arms if there is a difference of more than a certain percentage between them it can denote trouble. Only a trained doctor could probably say why!

[EffieGee]

Hi I've had lifelong symptoms and illnesses that have never been put together by medics, sometimes they've been treated, eg a basic thyroid check based primarily on TSH. I'm reading and researching as much as I can, late in the day. This follows what was termed a TIA 3 months ago. Having decreasing trust and faith in the system here I'm finding some astounding information, some of which is certainly thinking outside the box. The more I learn the more questions are raised. Re blood pressure, this video, one in a number of YT videos by Dr John Bergman, is interesting to say the least. The information he shares about US' JNC's recommended 'healthy' BP levels, especially JNC 8 in 2014, is interesting. For those in the UK, I'd never heard of this, it seems we're still generally going on the good old 120/80 'norm'. Just throwing it in the ring for you to consider. I wish you the best, I wish all of us the best and may 2018 be better than 2017 in every way possible. Just throwing it in the ring for you to consider. youtube.com/watch?v=o9BZVrf...(Not working as expected?)

[muddlemand in reply to EffieGee]

Thanks EffieGee, I'll lookk at the video when my internet improves - rural speeds, weekend... but I know I've been borderline hypertensive for too long. Frankly I didn't care as long as I could keep them off my back. A while back, they moved the goalposts and instead of a maximum 90 diastolic, for diabetics (= me) they had to aim below 80 - which my diastolic hadn't seen for decades. But recently, meaning the last 2-3 years, no one has bothered much. I've had enough keeping up with everyday life and was happy not to open another can of worms by taking yet one more question to a doctor.

My GP retired so the one I have now doesn't know me at all. the old one used to be good, but went part time a few years before he retired, and around then seemed to become less perfectionist - he was great before. Either it was nearing retirement or he fell for my ex's melodramatic weeping about our divorce (ex told me he cried on the GP) which would have made him believe I was inclined to milk everything for sympathy as much as I possibly could... they couldn't deny I'd had a stroke but they could believe I overdo the fuss and attention-seek. Which is why he's my EX, in fact. Took me seven years (from the stroke) to get well enough to escape him. Anyway, the end result is I don't miss the old GP but I am without one who knows me. Also, my diabetes consultant retired, who had been brilliant. My diabetes specialist nurse left this year - she wasn't keeping up with things and I had long waits for changes, but she was an excellent nurse and knew me and my situation. Now, I have to keep reminding them little things like it costs me £40 and a whole day + recovery day, for every clinic appointment, and I can't do it at all during the winter. Plus the wonderful pharmacy that not only delivered but kept on top of ordering my regular prescriptions and tweaking quantities every so often, all the calls about those details - got a new pharmacist and haven't been reliable since June.

So I'm free! I could move across the country without losing the security of doctors and teams that I know, that know me - because I haven't got that security now. For years I've felt that if/when I do move, that would be a big consideration.

[EffieGee in reply to EffieGee]

Sorry, copied and pasted too many times!