Some lose ends

Please can you help, I am trying to piece together some lose ends: My husband had his first episode of AF last Feb and since then we have been failed by the medical profession really badly.. we switched GP but it just got worse (with added difficulty that my husband is downplaying his AF). But he still needs proper check ups and advice? So I'm trying to drive things a bit ( whilst treading on eggshells really as he is the patient not me).

The only way to get things done appears to be by submitting written statements to the medics (this way it took me 'only' 8 months to get the cardio to look at my husbands ECG and finally diagnose him correctly and this cardio is supposed to be the best in Bristol?)

So your forum is at the moment the only way I can get good snippets of information then to get some kind of plan of action together.

My plan is to get husband to see an EP and an Internist as some of the causes of his heart problem might be the medication he is on for his Thyroid problem (he was put on a very very highdose levothyroxine,of which known side effects are AF and diarrhea, both a real concern.

the Cardio only sees him once a year.

Next step (in an ideal world) would then for the EP, Internist and Cardio to agree on a treatment plan?

Can you please let me know if that sounds feasible?

My question is: can you recommend a good EP/Internist in the Bristol area?

Another question: he now used the 'salt trick' for the last 4 times successfully,stopping an episode of AF in its tracks. Did anyone find any scientific explanation for this?

Reason being, we are currently trying to drive his Cholesterol down naturally (so far from 5.5 to 5.1 in 5 months). I would like to create some diagrams to prove it can be done and for him to be put on a lower dose of medication to reduce side effects. So scientific links rather than just anecdotal evidence would help to so I get taken seriously. Sorry about all this but you guys are my only go-to point and it's really getting to me. Thanks so much, really appreciate your help!!

23 Replies

  • Cholesterol - I read a study some time ago where apples were given instead of statins, it was an NHS study. The outcome was that they were as effective as statins without any of the side effects but cost more so not recommended! sorry lost the link but try googling apples lower cholesterol.

  • I was told by the nurse practitioner at my surgery that half a teaspoon of cinnamon (which I add to porridge) per day will help to lower cholesterol.

    Do hope you will be able to make progress. Some people on the forum make a private EP appointment to move them forwards.

  • Cinnamon also has an effect on insulin uptake.. Very good advice, but buy very carefully. If you google cinnamon seeking information on where the real type comes from and HOW MANY companies actually sell flavored sawdust! If I can find it Rellim I will send it on.... off for my morning walk! There is a taste test you can do and some visuals to tell if it is the real cinnamon!

  • Wow, thanks. I don't taste cinnamon too well and it could well be saw dust for all I know. It does have a plume of aromatic mist when you sprinkle it and the rest of the house notice the smell.

    Glorious day here, warm in the sun, chilly out of it. Hope it's similarly sunny in Switzerland for your walk.

  • Just came in from a glorious walk in the woods... still huffing and puffing. Grr.

    Now for the cinnamon, why it is important isn't even the sawdust (fiber!) it is the cassia cinnamon which is cheaper and not healthy for many reasons. It is darker and spicier, where as ceylon cinnamon is lighter and sweeter. I buy organic and here is the important part.

    CAssia cinnamon is HIGH IN COUMADIN! I think we all know where we are going with that!

    Hope this helps, if anyone else is interested we could start a new independant post!

    Take care, great walk!

  • Ho ho ho. is this why I can't get on an even keel with warfarin? And it was my INR expert who told me about cinnamon, although she did tell me about it months before I was persuaded to take warfarin. We did discuss cinnamon not long ago and she suggested buying sticks to pulverise at home. As it has almost no flavour as far as I 'm concerned, I was adding it quite liberally until my husband expressed doubt that I need take so much.

    Thank you Iris.

  • Those are my findings, and I am not qualified as medic, so.....

    Here is a link saying there is no interaction... now were they aware of the cassis cinnamon vs ceylon cinnamon?

    If you google cinnamon and warfarin you will find considerable links! I have chosen after my studies to go with the ceylon cinnamon!

    You are more than welcome Rellim!

  • Many thanks for this link Iris - very interesting and added to Favourites. I note that they deal on different pages with things like arnica and ginger in connection with warfarin. Arnica and ginger are two items on my list of things I have given up in the last year or so. I also have a list of things that have become treats. I used to eat and drink with such abandon!

    The current cinnamon in my cupboard has no indication of origin whatsoever.

  • I am grateful to be on -rivaroxaban for the moment! I am one those black sheep though who will stop at the end of my three months post ablation.... unless of course the AF has returned in full force. Still having bits but nothing in comparison! Didn't know about the arnica and ginger. People do forget that "natural" can be broken down to chemicals.... so yes always a potential for interactions!

    PS I'd toss the unknown cinnamon for an organic one from ceylon!

  • Yes, the cinnamon is going out. I may try porridge without it - or eat something else for breakfast for a change.

  • I suspect you are American? As I have no idea what an internist is for a start! Maybe that is part of the problem as you may not be used to the 'system' which as a foreigner myself took me a long time. Basically it is 'every man for himself' unless you have a very unusual GP I think.

    If your husband feels very poorly (ill) a couple of trips to A and E should get a result. If not then anticoagulation as most peeps on here stress is the most important thing if suitable for him. Probably the salt works because of diarrhoea so Dioralyte would be even better. Can't help on the cholesterol issue but I'm sure someone else will!

  • Keep a diary of his AF. Buy a blood pressure monitor - mine goes onto my wrist and it cost £12. Every evening record bp and rate. Write things like "poor a.m. No AF from 2pm" A sheet of foolscap will last 2 months. It is welcomed by the Drs and helps with your memory.

    I always find it hard to describe my AF. I cannot begin to tell you how many times I have wailed " I don't get palpitations." I had an ablation last month. The EP said "Given your history we were surprised at what we found." He told me that my left atria was enlarged but his report states " left atria seriously dilated."

    Do not allow your husband to play down his symptoms.

  • Thanks jennydog, I am already keeping a diary of his episodes and will now get him a bpmonitor as his bp is all over the place. There is also an app which both now have on our android phones, its called instant heart rate which also shows you any extra or missing beats. quite useful. Once again thanks for your support.

  • Your husband is lucky to have you! Such a grueling process for you both! Keep up your investigations it sounds as though you are on the right track. And do persevere until you get your answers, it will cut the waiting time down (and possible progression of AF) considerably for you (both) ! Bravo for your support to your husband, it isn't easy to watch either!

  • Thank you Iris this really helps :-) We are both going private now I will feel better once we have the letter from the insurance that they take an existing case of AF on without any extra costs and loads of exclusion clauses... I will report once I know more

  • A cardiologist once a year? That may be fine if all is well - symptoms, medication etc but apart from some salt and levothyroxine for the thyroid issue, you don't talk about any treatment specifically for the AF. No anticoagulation? You are right to want to inject a sense of urgency into this - your husband needs a kick up the pants. And I would respectfully suggest that compared to his exposure to a serious AF related stroke risk, cholesterol level, which at 5.1 is not overly high, is the last of his problems. If your GP can't get things moving then I wouldn't hesitate to put some pressure on the system with a visit to A&E - with some worrying symptoms....

  • Hi AnticoagulateNow, you are quite right, I would put more pressure on the system but he is not having any of it. Old school (RNavy) plays a part I guess. He was to go on simvastatin but because the side effects of the Levothyroxine (for his Thyroid) are still so severe and might have contributed to the onset of his first AF episode (We can't prove it but AF is on the list of side effects and the Cardiologist said it might have done). So therefore we are at the moment trying to bring down Cholesterol naturally, use all sorts of natural remedies to thin the blood naturally (loads of beetroot pickled, apples, berries ) until we get to see the Internist (Internal Physician) and EP who hopefully will work together with the Cardiologist to sort this out. I will keep pushing even if they curse me :-)

  • If it's only taken 8 months you're doing well, I've been trying to wring answers to reasonable questions out of the NHS for 17 years. Don't bank on scientific evidence getting you anywhere, in my experience they just brush it aside without even looking at it, and then label you an obsessive with a fixation. If you're searching for scientific papers, are you aware that Google Scholar will retrieve them for you without listing all the other rubbish that Google churns out?

  • Hi Ectopic1 great will check that one out

  • May I ask what the salt trick is? I know it has been mentioned before but didn't note the details. I wrote a reply to your post this morning on my tablet, but it just won't send. Most of what I said has been said by others so I'll leave it. If it turns up unexpectedly, you'll know why! JanR

  • Hi jan-ran, the salt trick was posted on this forum and I can't find the link now so perhaps the administrator might be able to help? Here's what I remember and what we do:

    When he feels an episode coming on (he says he feels quite anxious then), he dissolves a quarter teaspoon of seasalt (only seasalt works) in 5 oz of warm water. drinks it then licks a bit of salt of his hand. stops it in its tracks after ca. 10 minutes.

    I know generally salt is a bit of a no-no but it might have something to do with the electrolyte. But am not a scientist just an amateur who sometimes feels a bit like an imposter really. So what works for him might not work for others so please be careful :-)

  • Hi Petrac, some thoughts from an amateur on cholesterol.

    Mine is around 7.0 (the same for many years) and I'm healthy apart from AF now under control. The important figures are not the total but the ratio between the 3 factors that make it up. Doctors immediately say statins to reduce cholesterol with no comment on the problems they cause. I declined their offer as we are all different and the body produces the majority naturally, with food intake making up the rest. I believe cholesterol is generated to protect you and I read on this forum if you cut out all grains/gluten your cholesterol can drop markedly. I started this last month and will have a test in 6 months time to see if this works.

    Whether you cut out grains or try another method, you of course have to make sure any food substitutes are not worse for you. That's not easy.

    Of course high fat diet can be bad for you if you have compromised health already. However, animal fat in moderation is fine with no extentuating circumstances. I have been on that diet for the last 5 years and just had an MRI on my heart and ultrasound on my carotid veins and all are fully clear.

  • Hi Orchardworker, thanks for your comments, it really helps to see that I'm not the only one questioning the ration benefit/side effects of statins. it will be interesting to see how your next test turns out. cross fingers :-)

You may also like...