Any views on these labs and irregular heart beats please.

[ainslie]

Hi

I was over at Hertoghes office a few weeks ago to see about starting a new treatment and his docs like to test everything first. Here are my thyroid labs

TSH <0.01 Range: 0.35-4.0 mU/l

Free T4 : 12.3 Range: 9-19 pmol/l

Free T3 : 4.2 Range: 2.6-5.4 pmol/l

I am was on 3.5 grains of ERFA

I have told by cardiologist I have premature ventricular beats and some events of slow and fast heart rates, sometimes 159bpm at rest but rare , bradycardia and tachycardia.

Hertoges doc said TSH was too low and to cut the ERFA to 3 grains and then to 2.5 grains slowly?, that surprised me as I never thought TSH was a issue if on meds, the doc I saw has been there for 20 years and I thought Hertoge knew his thyroid stuff.? Also my FT4 is lowish and my FT3 is only 57% up range. I have read a book by a cardiologist who specialises in irregular heart beats and he reckoned thyroid meds can be a cause and to keep them no more than 1/2 way up range. ?

I am looking at other causes of the irregular hear beats but in the meantime any comments, view, suggestions welcome

Thank you

[greygoose]

Hertoghe does know his stuff, but he has next to nothing to do with the doctors in the clinic that bears his name, these days, from what I've heard. And this doctors - from what I've heard - do not know their stuff! Hertoghe himself hasn't seen a real live patient for years. On other forums, many, many patients are complaining about being ripped off in these clinics by doctors who have no idea what they're doing. Hope it's ok to say this, admin?

[Bean101 in reply to greygoose]

Totally agree.. i saw a Dr in his clinic many years ago and her advice ( which I trusted) put me in hospital for two weeks when I was strong enough to come back to the UK.. my Dr said I should of sued him.. wish I had!!

[ainslie in reply to Bean101]

what happened to you if you dont mind me asking

[ainslie in reply to greygoose]

oky got that, Ive seen this one doc off and on since 2007 including at same time as Hertoghe (shared consult) and he is a lot better than some docs I have seen in other countries inc UK. I agree most of them there are ridiculous. I think Hertoghe still does 3 hour consults but probably cost zillions.

Any views on the labs and the heart though please

[ainslie in reply to ainslie]

what happened if you dont mind me asking

[greygoose in reply to ainslie]

Is this a question for me or Bean101 ?

[ainslie in reply to greygoose]

oops for Bean 101

[Bean101 in reply to ainslie]

The Dr put me on a medication that I didn’t need and also Dr Hertogue was involved.. which landed me in hospital for a long two weeks! The hospital didn’t have a good word to say about him or his clinic.. they did say I wasn’t the first to be admitted!

[ainslie in reply to Bean101]

Oh, how awful, which hospital did you have to go to in Belgium

[greygoose in reply to ainslie]

That doctor was only looking at the TSH, which is rediculous and shows lousy education/training. S/he should know that if you're taking T3 the TSH is going to be suppressed because you don't need it anymore. Which is shocking coming from a Hertoghe doctor! I think you probably need an increase in dose, not a decrease.

The TSH itself has nothing to do with hearts.

[ainslie in reply to greygoose]

thank you, I notice my digestion and bowels are not as good since dropping the dose, yes, I agree I thought I needed 4 grains, decisions, decisions

[greygoose in reply to ainslie]

Well, if I were you, I'd go up by a 1/4 grain to start with. You don't want to miss your sweet-spot!

[ainslie in reply to greygoose]

oky thank you

[greygoose in reply to ainslie]

You're welcome.

[waveylines]

Ahhh the irregular heart rate debate!! 🙈 Why oh why? I've hit this one too. Even with BC treatment these Endos will say its the DTE that's caused the problem NOT all the necessary nasty drugs and immune treatment they pumped into me which are proven to cause this. So much so that for the last 8yrs cancer research has been busy exploring ways of trying to prevent it......not even when cardiology agree its the cause. but oh no in the endocrinology world its that fiendish treatment of NDT. THEIR answer is to stress thr heart further by grossly under treating! Marvelous idea. And you ask them for the body of research proving this is necessary and they dont produce it because as far as I can ascertain it doesnt exist.

Sorry I've just paid out for one of those and am fighting a nhs one. The nhs one has stopped thyroid treatment all together as he says hes not allowed to prescribe ndt and left me literally with no treatment but happy to wean me off ndt if I go amd buy some Armour Thyroid.......errrr? Isn't it prescription only

and writes that by the time he comes back from his holiday I will have run out. Like that's going to improve matters. The private one whose also a Professor has written something different. He says that yes can carry on NDT that hes not interested in the TSH OR Ft3 levels as they are not relevant ....but he wants ft4 at the bottom of the range on DTE! New one on me. Now wheres the science behind that one???? 🤬🤬🤬

And they wonder why patients end up having to self treat.....

Excuse my rant. I abjectly apologise.

If it were me I'd walk away from this one if it were me.

Apologies to admin if Ive broken any rules.....but where on earth do these doctors come from? I keep thinking I'm in a nightmare and will wake up soon..... I wish!

[arTistapple in reply to waveylines]

I have just read in the Guardian about the experience of a reporter (Adrian Chiles) whose father was delivered to A&E by a doctor who had not even seen him, far less examined him, after a fall in his Care Home. Chiles highlights the complete absence of care these ‘protocols’ bring out. We so know it in our line of illness. Last time but one, I was in A&E (I will agree my need may not be deemed as necessary as others but as the patient with needs I personally could not make that assessment - I was ill) I came out sobbing my heart out. I really thought I had PTSD incident. There was no place to lay my head and I was kept waiting for hours then shut in an examination room for a further two hours without a single person putting their head around the door. I could have had a heart attack and I would have been left there without care for two hours.

Anyway the point is where is the ‘care’? Protocols are given complete priority and good old ‘arse covering’. These protocols are allegedly for the patient’s benefit. Twaddle, they protect the medical staff.

Now it’s a case of the tail wagging the dog. I fear for young people being brought up like this. No sense of responsibility. No accountability. Unquestioning. No proper diligence. No common sense, putting us all in danger. Frankly I don’t want to be one of these dimwit’s statistics.

[waveylines in reply to arTistapple]

Couldn't agree more ArTistapple. I was admitted by ambulance twice in one week with a suspected heart attack....and was seen after 14hrs, eventually discharged after an all nighter told to contact my Cardiologist and heart specialist as I was too complex for a&e! I am not sure what I was meant to say apart from a&e said to ring them....presumably they felt they couldnt! second time 'admitted' after 18hr but no bed. We the group (waiting for a bed) that might collapse were kept an eye on by 2 nurses stood with their trolley laptops whilst we sat on chairs....not a trolley bed in sight. Despite begging for hours nurse/doctors couldnt drum up any paracetomol. in the end another at risk waiting patient offer me theirs infront of the nurses I took it so desperate was I. The nurse said I am a presciber I can get u some. How long will that take said I. Well the prescription has to go to pharmacy so several hours......unbelivable. Neither nurse seemed bothered about the terrible situation.....just a normal shift in a&e....There is No C in care.....just air.

And clearly little medicine available or much of anything else for that matter.

I felt traumatised too......

I think the standard has sank below third world country level medicine.

And then last week I went in for day surgery, same hospital.....and OMG it was like a breath of fresh air. Wonderful from receptionist up to and including surgeon. The care, treatment, facilities, kindness was exemplary. I was speechless with delight.....

I can't tell you how happy and relieved I was. NHS as it once was.....& loved.

[birkie in reply to arTistapple]

Ho Tistapple... Having gone through the NHS system like many of us I relayed this to my sister in law on a few occasions, she seemed not to be interested and abruptly changed the subject.

Now she as thankfully never had to use the NHS A&E for anything just her gp, but just this Easter week her daughter (my neice and God daughter ❤️) developed a bad chesty chough, it became worse later on at night, and she was having real trouble breathing (she's 10) my brother and sister in law rang 111 for help, she said the Dr who rang back seemed not to be interested in what I was trying to convay to him, just felt like he was ticking boxes, and told me "we need to establish if she needs to be seen by A&E.. I said" can you not hear her coughing she can't breathe "

My sister in law popped up to see me good Friday to collect the Easter presents I'd got my neice and told me a story of utter incompetence by the 111 service and A&E, saying the first Dr they saw was quite offensive saying she only had a mild chest infection, get her some calpol and a chough bottle (she'd already be doing that 🙄) sent her and my neice packing, 24 hrs later she turned purple and threw up her breathing was now very labourd, took her right to A&E where another Dr said she had a bad upper respiratory tract infection and a lung infection.. She needed antibiotics ASAP... My sister in law said to me.. "I believe everything you have said these last few years about the service you received by A&E" it was the most traumatic experience I've ever had, especially since it was my child, I hope to never see the inside of A&E again!!

But we know... She probably will

It's OK for people who attend only one time to A&E departments and have a good experience, it's when you attend more than once where you may just see how they actually work... Same for gps and specialists 🤷

[Singwell]

Both hypothyroidism and hyperthyroidism can cause irregular heart beats. I have AFib and hypothyroidism. Leaving the latter untreated for years almost certainly let to the former. From what you've described (guessing you had a 7 day holder monitor?) I'd say the types of your arrhythmia are more likely to be caused by the hypothyroidism than the meds. Most electrophysiologists will recommend the thyroid is brought into balance to assist with any treatments for arrhythmia. Might be worth you seeing an electrophysiologist if your arrhythmia is disturbing you.As a personal anecdote re thyroid health and heart Arrythmia, my own TSH recently doubled (though still below upper range) and my heart Arrythmia - which had been in remission for 19 moths - started up again. I've increased my levothyroxine and it's all settling down again.

[Vernonwendy in reply to Singwell]

well now that was an interesting read!

I also am hypothyroid and have AFib. Your experiment with raising your TSH and having your arrhythmia return is very interesting indeed, as I have had countless docs tell me that mine is caused by suppressed TSH.

[ainslie in reply to Vernonwendy]

My TSH is suppressed too but Ft3 only 56% up range and Ft4 is 12, it’s tricky to know who’s right about this one

[Singwell in reply to Vernonwendy]

I saw that lower down in the thread someone said TSH isn't an indicator for the heart. And I guess this is because we shouldn't use TSH as an indicator on its own for anything. But I also went by how I'd been feeling - I'd got so worried about arrhythmia returning I'd completely missed some of my old hypothyroidism symptoms also returning - tiredness, feeling cold a lot of the time, dragging myself put of bed in the mornings, increased anxiety etc. I put 2 and 2 together and just increased very slightly. Also, I read here that 75mcg is considered a pivot point for the thyroid 'Switching off' - which is what happens when we take levothyroxine- and I suspect this was behind the shifts I experienced.

[ainslie in reply to Singwell]

I suppose is that cause or coincidence though

[Singwell in reply to ainslie]

Since I hadn't had any arrhythmia for 19 months and it's now gone again, I'd say there's causality in my case. Doesn't mean it's so in yours.

[arTistapple]

I seriously thought about going to this clinic. Thanks for the warning. Falling into line with our homegrown dimwits here in the U.K.

[HighlandMo]

hi Ainslie. All I can add i s sympathy. I’m going through this at the moment and have a phone call with gp this afternoon after A&E visit at the weekend. My heart seems to be all over the place and it’s really scary. No idea what’s going to be proposed but I’m a bag of nerves already as I never agree with anything they suggest.

[josephinius1]

Can't add much to this conversation, but I'm interested because I started having PVCs when I started taking thyroid medication, 16 years ago. I just thought it was the medication doing it, (it felt like an overdose, and apparently overdoses CAN do it, but I didn't have other symptoms of being overmedicated and if my levels wver indicated anything, to them, it was "increase dose", so...?) but the internet assures me (my doctors here in the States have never made any connection of any sort with low thyroid and PVCs,) that PVCs and hypothyroidism are very common, but medication fixes it. Well, it didn't fix mine. It sounds like PVCs can be caused by just about anything, though; in my case, being awake seems to be the trigger...as they do disappear entirely when I'm asleep.

Meanwhile, I've never had a doctor even attempt to help me understand what varying levels of TSH, etc. might indicate. As I get older (63 now) and my issues are starting to get more complicated, I wish someone would try a little harder to connect the dots.

[waveylines in reply to josephinius1]

Connecting the dots requires brain power, analytical skills, reflection and knowledge......from this you can deduce its needs a special brand of doctor that is squashed flat early on as following pathways is brainwashed into them. You might get the odd doctor gone rogue and be lucky.....the rogues however are hunted and shot/reprogramned usually so u have to be quick! 🤣

[josephinius1 in reply to waveylines]

Indeed!

[Poniesrfun]

PVC’s are often caused by low oxygen or electrolyte imbalance. If they’re frequent or occur in a chain of four or more that can become serious. A variable HR isn’t necessarily A-fib and can be totally unrelated to your thyroid meds.

On the other hand, the heart is sensitive to T3 - depending how you take your meds variable HR could reflect the peaks and valleys of the T3 in your meds. It is also sensitive to gastric histamine (H2) — if HR increases after meals (post-radial tachycardia) taking an H2 blocker may help (Famotadine. Does not have the negative issues that PPI’s have.).

Someone mentioned seeing an electro physicist — I’d prefer a savvy internal medicine doc who specializes in cardiology. No idea how you’d find one in the NHS.

Patti in AZ

[Starseed56]

hi ainslie

I’ve not much to add to what the other responders have said, just to share my experience with you. I’ve been on ERFA for 7/8 months slowing increasing the dose from 30mg (half a grain) to 120mg = 2 grains. I noticed specially when getting to over 1 grain I’d get palpitations, I think sometimes shortly after a dose, and sometimes seemingly randomly. I have noticed since stabilising the dose for a while now that the palpitations have lowered 🤞

Your levels wouldn’t indicate to me that you’re over replaced. My TSH is now 0.005 but that’s expected with T3 . And your T3 &4 aren’t too far through the range .

It’s frustrating when you take a med to try and help yourself and it causes another thing to happen. Hope you can get it all settled before too long. 💜

[ainslie in reply to Starseed56]

thanks for info, can you remember what your FT3 and Ft4 were when palpitations started, I am trying to figure is it the Low TSH or FT3 that may trigger it. I asked my Cardiologist today re thyroid meds and heart and he said if numbers were around mid range he doubted it was a problem, who knows