As you may or may not recall, I was diagnosed with Graves' Disease in January this year.
Last Monday, I woke up with a weird feeling heart and so called GP, who duly called me in to the office. He had a listen to my chest and sent me down to University College London Hospital where I spent the night in the Acute Medical Unit with atrial fibrillation.
Anyway, no real change in med aside from adding to anti-coagulants as this apparently makes me five-fold more likely to have a stroke.
The AF has not come back - it went away of its own accord sometime during the night on Monday/Tuesday and now I cam just back to good old tachycardia again (resting pulse 95-115 at the moment)
I am hoping that the AF will go away when T4 settles down, but wondering if any other Graves' folk had had bout(s) of AF and could offer any insight.
Thanks
Written by
efilwol
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Hi I have had AF all my life. Anticoagulation is vital.Mine did not alter with the correct thyroid treatment. however when tried thyroxine ( 3 or 4) makes ) my heart was very bad. Once I changed to armour ( Era OK too ) my Af just went to how it was.before. Good endo`s and cardios know that thyroid problems can bring on AF ie it would have happened but at a later date.I went on to develope many devastating heart problems, this is unusual. When in the early stages AF is often always intermittent While active ( depending on other conditions ) there are some simple procedures ( non invasive ) that can give a temporary cure for many years. However, you still need to stay on anti coag. incase it returns, which it eventually does.If you need to see a cardio make sure it is one dealing in arrthymias, they are totally different and top of their profession.That is so important. I had seen lots of good cardios before I saw my present arrythmia specialist, such different treatment which I would have had years ago. It sounds to me that you need , at the very least, Beta blockers for your fastish HR.I was always told, even with just AF, that essential to be looked after by an endo. Make sure they are a good one.
I hope that helps. Anything more specific ,get back to me.Click on pretend picture or PM.You probably know that but finding a lot of people do not.
Thanks for that. After a lot of pestering, I got an appt to see Dr Ron Simon - he's an electrophysiologist at the Heart Hospital here in London. I have heard that the hear Hospital is "the best" so I am hopeful the he will have some ideas.
Hi , Before I forget , falls sort of buckling is common with AF and walking as if drunk. Years ago people used to think I was drunk, I have never drunk as do not like it! It is now a well known symptom, although drunken walk etc. can also be Potassium ( low ) and also a different type of falls and vit D ( hormonal not cardiac). The falls are quite unique ,no warning or loss of consciousness. Usually not painful as elegant sinking!
As regards your e mail. I am so glad you are seeing the "proper " cardio there are not many about. totally different level even to a good normal cardio.If very bad AF ( not you at the moment) a simple pace maker often is wonderful. I am far beyond that and have an ICD which is only really for VT`s causing cardiac arrests It does also contain a pace maker, mine works at 97% all the time! Early treatment is drugs often if bad amioderone, a horrible but brilliant drug, normal dose 200mg. It does make the thyroid lower but you just have to compensate for that ( endo vital)Otherwise beta Blockers.,or as well.There are several other drugs I was on along with these but I am in permanent AF, that is not really too serious. Beta Blockers do not effect thyroid but do not take on the morning of the test ( until after )as they give a false thyroid result.If medication not working or AF most of the time. it can be days then break etc etc. Then a cardio version is usually tried up to 3 times, depending. Very simple but even if it works you stay on the drugs. Likewise an ablation, a bit more complicated. Catheter to heart ( local) and shock to the bit causing the trouble. Fairly safe for normal people ,there are various variations to that. often tried 2 or 3 times but you do need to be actually in AF for these treatments It does not alter the post treatment but makes you feel better!
Make sure you have a .copy of bloods with ranges and letter from cardio to GP. Keep a copy with you for emergency hospital admissions. Just in case. Unless constant HR of 200 usually OK., if that 999.
Come back to me if want any more info ( I may be a day or so as visitors now., any way send me a PM after seeing the cardio and let me know how you get on.
Thanks - may have spoken too soon as Heart Hospital just called back to say that they don't think I should see Dr Simon after all. Now phoning my GP surgery to hash it all out, so fingers crossed!
Ridiculous. It is probably because few about.No idea where you live but I live in Warwickshire, several in Birmingham but only at large hospitals. I think there is a good one at kings, you would need to check. There is an AF society which are brilliant with advice. Th secretary is at St, Georges so must be a cardio suitable there too.I know Kings, if it is there? has a huge waiting list, not ideal. Any chance of you just seeing the cardio ,privately? just for an initial consultation. Some will let you swop to NHS. Private tests, very expensive. Consultation would not be over £150 ( rules ) and a Prof can charge £300, a lot are cheaper than that.Get your GP to do an e mail, strongly worded1 it should make all the difference. The British heart Foundation, BHF are so very good, they have brilliant cardiac nurses and would also tell you about the special other societies, organisations. Be addament, it does not come easy but often the only way! I saw a AF a specialist , a Pof, a whiile ago, a big mistake!
It's OK again. I called up and made a fuss and they agreed to let me come along (probably to get off the phone with me!)
Now I have to persuade someone to fund my treatment. Anti-coagulation Clinic (oops, that should be called warfarin clinic) won't fund anything but warfarin, which I cant' take. Endos say it is up to cardios, GP says "not my table". Hope the cardio agrees to fubd my meds or I guess it is back to aspirin (not necessarily a bad thing)
oh dear, all I can say is one step at a time. Do not be persuaded to just have asperin it used to be used many years ago for people with AF and so many deaths attributed to not being on proper anti coag..I cannot understand why you cannot have the new ( yes expensive ) drug, but you are a special case. One of my Profs works for NICE. he also does a lot of research and says that it is wonderful for simple AF. it has been available and recommended in some cases for some time now.if it comes to the worst ask for a short trial!Normally when you see a consultant NHS or privately they write to the GP and ask for certain drugs. if very expensive they go to the local health and ask for special funding.I was offered it originally ( the higher strength) but in the end too ill to go on it.I should try not to worry and wait until you see the cardio. Even if they try to reverse the AF you still need anti coag.years ago I was told asperin and made a fuss as knew useless for AF, I won! Now it is well recognised. keep in touch.Phone the BHF, so helpful or anticoag n Europe ( Ace)
Hi I also have had AF for years .I am hyperthyroid. What I have found helps is lots of Magnesium. Dont drink any alcohol. Dont go without food and alternatively eat small meals. Try not to get stressed. Also look up the work by George Eby who has found l-Arginine and l-taurine help with Af. Stay hydrated even if you carry water everywhere with you. You must take an anticoagulant. I cant handle warfarin so just use aspirin. There are a lot of other antiplatelet clumping alternative meds you can take as well like Ginkgo biloba Vit C and Selenium.Research them. DON"T exchange them for your anticoagulant but add them in. I am also vegetarian to reduce my risk of stroke.
Hi Sue, Asperin is not the best for anticoagulation. With severe problems of hear it is given with Warfarin. Asperin just works on the very minor arteries and vein, There is a better alternative anti coag, fairly new. passed by NICE. Which does not require monitoring. It is good if suitable, 2 strengths. It is dangerous taking magnesium with out a blood test, tiny range., I have it on a script and have to have weekly blood tests. In hospital a drip is best. All the electrolytes are important for everyone to be in range especially with any heart , electrical conditions ,as AF.Main electrolytes are magnesium, calcium ( corrected result) sodium and \potassium ( E`s and U`s.) Potassium is essential to be middle of range. It and VT`s., arising from AF caused my 4 cardiac arrests.Low Potasssium is dangerous for this, even low in range. High Potassium ( therefore can be from taking magnesium ) can cause acute kidney failure. Happened to me twice, very serious.,coma etc.You are quite right fluid intake is certainly very important An endo or a cardiologist looks electrolytes this with input if needed from a nephrologist.I was told by all cardios that I must be under an endo and only have thyroid treated in range and just enough to feel OK.I have found that only the best cardios and top pathologist ( cause of sudden death ) are aware and understand this.I hope this is some use to you. I have been very lucky! i would not like anyone to go through what I have been. by not being aware of these facts. it is entirely up to you, of course, what you do,
Thanks for that. Interesting, I was wondering if magnesium had sparked the AF off, as it occurred a few days AFTER I started magnesium supplementation.
Sadly, I can't drink any alcohol at the moment as I am one so many different drugs that all have DO NOT DRINK ALCOHOL in big, black letters on the pack. I think I am having Chardonnay withdrawal... I would love a nice big glass of crisp cold Chardonnay or Viognier .... sigh.
Avoiding stress would be great, but impossible in my life. And I am like a camel, always toting water along as I am chronically thirsty since I developed Graves'.
I am taking anti-coagulant - I actually self-discharged from the Acute Medical Unit in order to begin anti-coagulant. It was driving me mad as I had been in the AMU for 28 hours, with advice from 2 doctors that I much begin anti-coagulant IMMEDIATELY and yet I had none (probably because I was "difficult" and wanted vegetarian anti-coagulant rather than one made from pig guts (dalteparin/heparin).
I already take loads of supplements that are anti-coagulants, although that's not why I started them. Gingko, co-enzyme Q10 etc. This makes me a bad candidate for warfarin, along with the fact that I am going to be traveling most of March & April, so I won't be able to do INR tests. So, I guess it is remain on fondaparinux or swap to rivaroxaban or digatriban.
Anyway, after 28 hours, I left because I had veggie anti-coagulant at home, left over from my foot surgery. So I went home to start anti-coagulant, but let me tell you, hospitals don't like it when you self-discharge!
P.S. - just wondering if you were given injectable heparin as you first anti-coagulant? It is one of my bugbears that hospitals dish this stuff out without telling people that
1) it is made from the intestinal mucosa of pigs and therefore not suitable for vegetarians, vegans, Muslims, Jews and other people that want to avoid porcine products and
2) there is a non-animal drug available for injectable anti-coagulation (fondaparinux sodium)
Injections not used often as destabilised the warfarin. Mine so bad , 4 strokes ( clots ) and 4 cardiac arrests++ so I have to test INR every day and alter accordingly.best hospitals leave me to it! Heparin mostly used for full surgery when it is necessary to come off the Warfarin, it has a very short life in body.There is the newish drug very good see Ace ( anti coag mag. Europe, brilliant ) No testing for that, not suitable for me., especially good for AF. Jackie
I had Graves' as a teenager and had a PT followed almost 20 years later by a TT. Obviously with no thyroid I am on replacement (T4 only) and yet I still get palpitations, a heart valve was damaged when I had Thyroid Storm in my 30s and now I have an enlarged heart.
I have recently had an increase in my Thyroxine but the palpitations will not go away, sometimes my heart is racing at 140BPM for up to half an hour. I sometimes get quite scared and then it normalises. I am on Clopidogrel because I had several mini-strokes when I was under-replaced and my cholesterol was 9.7. I read recently that Graves' can deplete the COQ10, don't know if you have considered supplementing that to see if it helps your heart to cope. This is interesting:
Thanks for that. Don't know what PT or TT are, but I assume it's not good!
I will never get rid of my poor little thyroid, no matter what. I find it quite weird that, when the thyroid is being attacked, the solution is to remove it. Poor little old butterfly is the victim, not the aggressor, so it seems unfair to attack the victim (and yes I know I am anthropomorphizing and basically it's because I don't want to be dependent on a drug for life)
Graves' seems to deplete everything... the only new supplement I have added is magnesium, but I take so many I should rattle when I walk. I have been taking co-enzyme Q10 (especially as I am veggie and this comes for meat & dairy) for several years along with Calcium & Vitamin D, Milk Thistle, Fish Oils, Devil's Claw, Celedrine, Evening Primrose Oil, Folic Acid, Low Dose Aspirin, Rose Hips, Magnesium, Glucosamine, Vitamin E, Gingko Biloba, Selenium, Zinc, Vitamin C, Bromelain, l-carnitine (added recently)
See what I mean about rattling when I walk? A lot of these are for arthritis, but a lot of them are also contra-indicated by warfarin as they are natural anti-coagulants.
Don't know if they are helping or not - maybe I am just manufacturing expensive urine....
I am sure I would have liked to hang on to my thyroid but if the alternative is hallucinations, a mental hospital and the threat of death from thyroid storm, then goodbye little butterfly!
That is what actually happened to me. A truly difficult decision, yes, and one which I am not sure I was actually capable of making at the time, I was so ill. Beta Blockers and carbimazole did absolutely nothing to help me.
I now take thyroxine. I was fine for a long time but the doctor reduced my dosage which made me quite ill. Now that I am back at the correct dose (which, yes, I had to fight for) I am fine, and apart from the clopidogrel (which I plan to discuss with the doctor...) I have been taking just COQ10 for about four months. I am 68 and do not take anything else, no supplements, no vitamins, and now that my thyroxine is at the correct level, I am feeling pretty good.
It IS true that I need to take the thyroxine for life, but the thought of what my life would have been like had I not had it removed does not bear thinking about, and 3 tiny tablets once a day is a small price to pay to restore my sanity which was extremely fragile and led to the destruction of every relationship I had from the age of 13 to 37 when it was finally removed.
(I really don't think I could afford - how many? 19? - different supplements. Is that for life? I don't think my pension would run to that!)
Who knows? I may eventually get to the point where I am ready to put the butterfly into the kill jar, but not now. It sems like exchanging one problem for another, based on all the hypo problems I see on this forum.
Anyway, if the mythology is correct, I will eventually end up hypo anyway.
Actually yes, the only I take is a veggie version made from algae, but it's just habit to say "fish oil" rather than "vegetarian Omega-3 supplement made from algae".
Dr Lowe died last year and he was an Advisor to Thyroiduk as well as being a Scientist and researcher. He ran three sites, Thyroidscience.com, Fibromyalgia Research and DrLowe.com.
His sites are now archived and sometimes the link may not work, Hopefully this now works. There are other topics at the top of the page may be of interest.
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