Hi everyone, I am looking for some advice here and am losing faith in the NHS to help me! It is a bit lengthy so I will put it in bullet points;
* Diagnosed as hypothyroid around 10 years ago around a year after having my first baby
* Prescribed Levothyroxine - current dose over last 3 years - 100 mcg per day
* 1-2 months ago (can't recall exactly when) started having occasional palpitations, irregular beats and feelings of breathlessness
* 1 month ago - accidentally took 400mcg per day for a week (due to change in tablet dose without realising)
* 3 weeks ago - had one episode of thumping heart where heart jumped from 65bpm to 125bpm suddenly and stayed up for 10 mins then within seconds went back to 65bpm
* 2 weeks ago - felt odd - palpitations, muscle fatigue but feeling hyper, heavy chest tremors to name a few - this went on until
* last Friday - felt all of the above and totally weird
* last Saturday - the same - went to a & e
* Thyroid TSH blood test normal
* ecg abnormal - diagnosis of WPW syndrome - Dr's not interested in thyroid contribution to this and refer me to a cardiologist for which I now await an appointment
* That same day as I felt so awful I stopped my thyroxine as I felt sure my symptoms were to do with this
* Went without thyroxine for 4 days, felt exhausted and drained and put this down to recovering from how terrible I had felt the week before as I though it would be too soon to make me hypothyroid and suffer the effects of that
* GP said I must continue on it so restarted the thyroxine 100mcg Wednesday this week gone, Thursday felt a bit better and Friday felt almost back to my old self.
* This afternoon have felt the same symptoms that I felt last week (minus the heavy chest and palpitation - I feel a foggy headed, muscles are really aching and I feel a bit shaky and a bit on edge
What on earth is going on? My GP said he won't refer me to an endo and says they only do TSH blood test, so no more detailed bloodwork. The symptoms of hyperthyroidism and WPW syndrome are the same as are the possible side effects of levothyroxine. Does this make sense to anyone on here? I don't know what to do next? Does anyone have any good endocrine doctor recommendations as considering going private? Thank you to anyone who responds.
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Smitho1972
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Your time lines on your bullet points are somewhat mixed up. Were you getting palpitations BEFORE you accidentally took 400 mcg thyroxine per day?
If you were feeling fine on the 100 mcg per day, then it's just going to take a few weeks for the body to adjust to having been given a megadosing for a while and then you stopped taking it entirely, etc.
If you weren't feeling fine on 100 mcg thyroxine per day, which isn't terribly clear in your posting, then that's a different story entirely.
Hi gabkad, well I am mixed up myself about that as I can't remember (part of my foggy brain perhaps). It was around the same time. I plan to have my levels rechecked in a few weeks.
If your ecg results are abnormal then you need to have faith in the diagnosis of WPW syndrome! In the meantime, stopping the thyroxine altogether was not necessarily a good idea - from what I understand, any changes should be made only 25mcg at a time over a period of 6 weeks.
I know a lady with WPW - she underwent a procedure where they passed an electrode through an artery to the heart and cauterised the offending misfiring part... it was a simple procedure with minimal recovery stress. She has been fine since and just needs regular checkups.
It may take some time for your hormones to regulate after the fourfold increase, so bear with it please.
To concur with the poster who suggested getting a full thyroid panel and antibodies tested. Low or high thyroid (specifically T3) can cause palps and atrial fibrulation (a quick scoot on pubmed and any doctor should know that heart and thyroid are intimately connected!! And good cardiologists know all about T3!!). medind.nic.in/jac/t09/i3/ja...
As can low magnesium, low iron, low B12, low Vit D and wonky electrolytes. Magnesium glycinate is good for palps. Low iron in particular will make you feel hypER even if you are hyPO. Muscle aches, fatigue etc can be both a HYPER and a HYPO symptom. Air hunger is usually a hyPO symptom.
Many find they do fine on levo for many years and then gradually things start to deteriorate if you haven't got your 'ducks in a row'.
Your GP is lying, they don't only do the TSH test, what he's saying is he won't authorise any other tests, not the same thing.
If you can afford it suggest getting your own tests - Blue Horizon do a good bundle of tests, I think it's Comprehensive Blood Test V - which tests pretty much all of the above, you'd then add a T3 test on top, blood drawn at local Nuffield or Spire hospital. They have some deals on at the moment I think.
It is possible to have something called 'T4 Toxicity' whereby the T4 is sloshing around in your blood but it can't convert or get into your cells - due to a conversion block or low co-factors. This is where you feel kind of hyper and hypo at the same time.
T4 has a half life of 8 days, so it'll take a while for the accidental overdose to work it's way down and skipping your meds for a few days was probably wise (as you had plenty of it in your body already) and you will feel all over the place as suddenly your body had a much higher dose to deal with (particularly if your body can't use it properly, which it sounds like might be the case).
Try not to panic .... but now is probably the time to put your hands on the steering wheel of your own care ....
I so agree with everything GirlScout has said here. Don't panic and take control of things by having all the tests, private if necessary. I had all the same issues, Cardiologist was worse than useless, totally ignoring the relevance of a below range T3 level and hideous ectopic beats. Turned out that levothyroxine was making me toxic, I had barely any Ferritin or B12 and my adrenals were just about keeping me alive after six years on Levothyroxine.
Try going to see Dr. Peatfield. He brilliant but busy. Have you checked adrenal situation? If it not working properly your body cant absorb levothroxine. Read Your Thyroid and how to treat it by Dr. P. It clarifies everything and how to deal. Your symptoms sound very familiar and can be dealt with. But do something different!
I have the symptoms you describe when my T3 levels drop, have you had this checked recently, they can be low even with what is classed as a 'normal' TSH. You also need to have your iron, Ferritin & B vitamin levels checked out, as even though you are taking Levothyroxine this is only T4, if you have any other deficiencies the conversion of T4-T3 can be seriously effected.
In the end "going private" is sometimes the best solution if you can afford the consultation fee which can be anything from £100 GBP to £200. And any tests will cost extra to the above.
The problem will come if your GP will not give you a referral - as Consultants (in the U.K. where I am) can not usually be approached directly. Some towns and cities have what are effectively "private" GPs, and going to one of these first might be an possible idea for obtaining a second opinion. I have consulted one twice in Edinburgh, Scotland, at a cost of £70 each time. And there are also "walk-in centers".
There is a book available on Amazon - Thyroid and Heart Failure - I have saved and bought it after years of reading about the heart and thyroid. It is about the research done all over the world illustrating the connection between the heart and the thyroid. Heart problems are systemic and linked to the Endocrine System and not just contained within the heart
You can look at the book on-line and read bits - T3 or Liothyronine is the STAR of the show !!
I bet your heart problems might well be due to being underdosed and as your doctor has already told you all he diagnosis is the TSH and keeps it in range. He/she knows little about treating someone with hypothyroidism.
If we are too low on levothyroxine, our heart cannot pump efficiently as we don't have sufficient hormones to do so as well as all our other organs being affected.
It is important that your FT3 is checked. T4 (levothyroxine) is a pro-hormone and should convert to sufficient T3 which is the active hormone our receptor cells need for us to function normally. You're not the first patient to be under-dosed.
My heart played up before being diagnosed and also afterwards. I am fine now on T3 only and some of us need either some T3 added to T4 or T3 only or another thyroid hormone altogether. The only problem is that the British Thyroid Association et al have made False Statements about it .
Never take the word 'normal' with regard to blood test results. We don't want normal we want 1 or below and some of us a suppressed TSH.
The dire situation of the treatment/diagnosis of people with a dysfunctional thyroid gland is stated clearly below. Lorraine Cleaver who has commented above is the person who has taken her case to the Scottish Parliament and has a Petition there.
Ok I am Hypothyroid and also have WPW. Don't think there is a link but I could be wrong.
When you have any excess adrenalin your heart with WPW syndrome does a short circuit basically so just pumps blood around the heart for a short while which is why the heart bears v fast. Mine gets up to 200 sometimes. Horrid but won't kill you! You then feel exhausted after one of these episodes and quite often need to sleep, I think it is probably because while you are having an attack the rest of the body is starved of oxygen.
My dr said a way to stop it is to press on your neck (funnily enough where your thyroid gland is, maybe there is a link!)
Although I've found a really good way to stop it is to use the excess adrenalin up so a short fast run or any exercise. Quite funny if you are In the supermarket
Don't do what I did, get really paranoid that you are dying, concentrate hard on how you are feeling, isolate yourself and make yourself have panic attacks. I didn't tell anyone either and was I'll for several years. You are ok, WPW is horrid but you are not dying!!
I wouldn't stop the thyroxine, stay on your normal dose.
See the consultant about the WPW. They can stop and restart the heart which sometimes sorts it. My feeling is though that if you stop worrying so much and try to stop waiting for it to happen you'll have less adrenalin and it will happen less anyway.
Hello! I'm sorry I don't have anything to offer up in the way of WPW, but, when I was a child and suffering horribly from adrenalin-induced migraines, my GP and a cranial sacral therapist both told me to press in my neck (where the thyroid is) to calm myself down. The migraines normally followed excitement (of having a friend to stay, birthday etc.)
I had forgotten all about that until I read this post!
I am overwhelmed with the amount of useful information you have all posted in your responses. It is late here now (UK) and so I will re read tomorrow but yes, I am definitely going to 'put my hands on the steering wheel of my own care' (to quote girlscout2). I probably won't get the blood tests until the new year but I will definitely post the results. Thanks for all your advice, it is so nice to feel listened to!
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