Ectopics from thyroid?: Hi everyone, I wanted to... - Thyroid UK

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Ectopics from thyroid?

Contra21 profile image
102 Replies

Hi everyone, I wanted to ask , I had rai 2013 and a year after started experiencing ectopic beats. Took a hold of my life. They come amd go , hearts tests all clear. Does anyone else get them and think they are from not having a thyroid? Getting a dose right is near impossible , and drs say.no. connection but anyone get the same? Any relief? I recently increased my dose been a week amd got one last night after not having them bad for a year but in a month my results went haywire unsure why. Ps. Can you get afib from no thyroid and have a healthy heart or future heart problems from removing thyroid ?

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Contra21
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humanbean profile image
humanbean

Personal anecdote :

I had ectopic heart beats and tachycardia (fast heart rate up to 150 beats per minute) when my iron and ferritin (iron stores) were very low/deficient. Improving them has made a big improvement to my heart rhythm. I still get tachycardia but not nearly so often or so bad as I did before I improved my iron/ferritin. Also, my heart rhythm is normal now.

.

I would suggest that anyone with thyroid disease or a missing thyroid should optimise as many nutrients as they can and having done that they must maintain them at optimal to keep themselves as well as possible.

The nutrients that get mentioned most often on the forum are :

Ferritin (if low or high then an iron panel is very useful)

Vitamin B12

Folate

Vitamin D

Magnesium (No point in testing Mg - the testing is not reliable. Mg can be supplemented as long as the kidneys function. The kidneys rid the body of excess magnesium as long as the kidneys are functional.)

Others that are mentioned less often are :

Zinc

Copper

Selenium

Iodine (This must be tested and found to be low or deficient before supplementing.)

Contra21 profile image
Contra21 in reply tohumanbean

They started for me a year after rai. I don't know why they come is it thyroid levels? If so they are impossible to manage when they tell you your ok. I have thalassaemia so I eat livers. But now I have sore knees , low blood pressure, dizziness so bad , anxiety amd felt the ectopics return last night amd think I was ok. For a year why are they back? Will this ben my forever it's been 9 years how can I get this under control.

pennyannie profile image
pennyannie

Hello Contra :

Looking back through your previous posts I see you are dealing with a lot of health issues.

I can't pretend to know the answers to all that is going on but as far as RAI is concerned you do need to dosed and monitored on your Free T3 and Free T4 readings and not a TSH -

Do you have any recent blood test results and ranges to share with forum members ?

Were you originally diagnosed with Graves Disease and why you were treated with RAI ?

You might like copies of the most recent research papers regarding RAI :-

ncbi.nlm.nih.gov/pubmed/306...

pubmed.ncbi.nlm.nih.gov/338...

What treatment options have you tried and what options are available in Australia ?

It is essential that you are dosed and monitored on your Free T3 and Free T4 readings and not a TSH :

RAI is a slow burn which ultimately burns out out your thyroid in situ :

RAI also burns through the Hypothalamus - Pituitary - Thyroid - feedback loop -

commonly referred to as the HPT axis -

which is the ' axis ' the TSH relies on as working - and why your TSH is now meaningless.

RAI is known to trigger symptoms similar to those of fibromyalgia and Sjogren's Syndrome :

RAI is known to trash vitamins and minerals - and without optimal vitamins and minerals we know that T4 - Levothyroxine is less than effective :

Do you have any current readings of ferritin, folate, B12 and vitamin D ?

We know T4 is a storage hormone and converted in the body into T3 which is the active hormone that runs all our bodily functions and that the lions share of the T3 will go o support our hearts and brains.

It could be your issues are because of low T3 - but we need some thyroid blood test results and ranges to help better understand what is going on.

I see you are now recovering from having had your gall bladder removed - so rest up - the body takes time after any operation to recover - so don't expect too much too soon.

anna-c profile image
anna-c in reply topennyannie

That's really useful information there, thanks. I have noticed my heart starting to flutter not badly to cause much distress but had stopped vits etc, silly I know, have put myself back on them before I get too far down. My GP will not ask for T4 or T3 to be tested said its the lab who decides so I have told him I will not go for the blood test as just wasting my time. I do realise after seeing responses to other posts that it is the lab who decides, just shows you how much GPs dont care when they dont insist it is carried out. I am fortunately one of the more healthy ones on this forum, my heart goes out to everyone worse off than me.

pennyannie profile image
pennyannie in reply toanna-c

Other factors that can impede and down regulate conversion of T4 into T3 are any physiological stress ( emotional or physical ) inflammation, antibodies, dieting depression and ageing - so not as easily rectified but worth considering.

If dealing with RAI thyroid ablation for Graves - check out Elaine Moore who went through this treatment at the turn of the century and finding not help or understanding with her continued ill health started researching this poorly understood and badly treated AI disease herself and now a leading authority with a world wide following and with several books published. elaine-moore.com

Hashihouseman profile image
Hashihouseman

YES! I am fairly certain my sudden onset ectopics and arrhythmias were caused by excess free T4 caused by having to take too much levothyroxine to convert to normal levels of free T3. There is a mass of good evidence that excess T4 almost doubles the risk of AFib and I was getting chronic Bradycardia from both low fT3 and highfT4. Reducing levothyroxine and fT4 and supplementing with just 5mcg Liothyronine T3 ameliorated all the cardio anamolies. The balance of fT3 / fT4 seems critical for heart muscle health.

Contra21 profile image
Contra21 in reply toHashihouseman

excess T4 almost doubles the risk of AFib , how do you know you are in excess?

Hashihouseman profile image
Hashihouseman in reply toContra21

excess could be defined in many ways, possibly only one is the right one for you but until you figure that out you could aim at middle of the lab range. The large scale population studies indicate that normal healthy freeT4 is around 15, which is where most healthy thyroid people come out but normal healthy could be different for some, a minority, of individuals.

Contra21 profile image
Contra21 in reply toHashihouseman

Mine is 14.5 and most people say it's way too low, under medicated. ?

Hashihouseman profile image
Hashihouseman in reply toContra21

what is free t3?

you can't judge the adequacy of free T4 without knowing free T3 and TSH all from the same blood test.

Contra21 profile image
Contra21 in reply toHashihouseman

T3 4.3 ranges 3.5 to 6.5

Hashihouseman profile image
Hashihouseman in reply toContra21

Maybe you could increase levothyroxine by 12.5 mcg see what happens to symptoms and blood levels but 14.5 t4 and 4.3 T3 are not be far off normal but not exactly right for you, although going higher could disrupt things but as ever symptoms are just as important as blood levels…. And heart issues could be unrelated….. and could be benign, my cardiologist said some ectopics were almost normal and the frequency was the potential issue so if you have been thoroughly checked maybe consider your thyroid separately especially as your free T4 isn’t going to upper range where increased cardiomyopathy has been shown to be a risk factor…

Contra21 profile image
Contra21 in reply toHashihouseman

Spoke to him today. He was so rude this time. " you have to take 125 not 112.5 don't have the 25 tablet. My tsh is 5.25 . I've been doing a week of the 112 scared to Juno to 125 but he said your having trouble with absorption but august I was ok just last 6 weeks have been haywire. Guess Tom I have to do 125. He said you'll have to deal woth ectopics your my only patient with this. It's unrelated. As of last work I did echo , ecg amd holter all clear but wasn't having ectopics then but results were good. He said I'd consider beta blocker. He just went on a tangent of prescription not listening to me.

Hashihouseman profile image
Hashihouseman in reply toContra21

You are not being professionally and respectfully supported. maybe change your doctor?

I take my levothyroxine (and my liothyronine) in split doses 3 times a day, at bedtime on waking and midday, bollocks to absorption issues, its the negative feedback from single large doses of T4 that are more of a problem. FT4 fT3 need to be in balance so if you don’t convert (or absorb well) then replacement T3 could be the answer - it is for me!

25 mcg T4 levothyroxine is available! Get it privately if you have to, just to experiment and find the dosing regimen that works for you, then go back and ask for what you have proved you need.

The heart issues may or may not be a red herring but the there is plenty of evidence that high free T4 (over the median value of 15/16) is associated with increasing risks of AFib

Contra21 profile image
Contra21 in reply toHashihouseman

The afib is what scares me im only 40. My heart test were all clear.. He's giving me 125 to take I just worry as my tsh has never risen this high, wonder why this last 6 weeks it's stagnant. The surgery i had 3 months ago? He said I need to stop the 112 and do 125 but scared to increase and feel worse bit qorry my tsh will get higher. He said as I suffer from ectopics that the t3 would exacerbate them. As for new dr he's my 3rd one I'll have to try again. Regarding the absorption I never had a problem I dunno maybe surgery did something. So hard to know, but he said you have no choice you must do 125.

Hashihouseman profile image
Hashihouseman in reply toContra21

adding replacement T3 may resolve your issues, the study (ref below) did not find TSh or fT3 associations with afib whereas excess free T4 was significant risk factor. This would seem to apply whether your ectopics etc were assoc with your thyroid treatment or not!

onlinelibrary.wiley.com/doi...

If you can trial T3 supplement you may not need much e.g. 5 mcg to get good freeT3 levels and keep both TSH and freeT4 more normal.....

It is NOT physiologically normal to only have T4 input, whatever they all say about conversion!... the healthy thyroid produces 20% of the daily T3, as T3, one can only conclude it doesnt do that at random! It also NOT physiologically normal to have all your T4 produced in one lump, thyroidal T4 is pulsitile over 24 hrs so the best we can do to emulate that is split dosing (of both t4 &T3)!

Physicians want a simply easy consistent regimen, thyroid metabolism is far far from simple - the delicate feedback and feedforward loops can be screwed up by conventional (rudimentary) treatments the clinicians are so doctrinaire about but its your health, your body not theirs!....

Contra21 profile image
Contra21 in reply toHashihouseman

You understand with grey goose the thyroid so well. Your response is overwhelming. I don't understand it and rely on the drs as when I feel a symptom eg an ectopic I panic. I hate it so much. So he said increase dose 5.4 is too high. I asked him questions and in the end said you are anxious. Look your even getting a b12 shot amd don't need it. It's at 260 but got a referall for a shot. I just want to feel better I'm crumbling.;(

Hashihouseman profile image
Hashihouseman in reply toContra21

sorry to overwhelm you, there is a solution, take it easy and slowly, rely on the fact your heart health checked out ok, take the rest of the advice according to what you can get your head around and what helps you. some advice on here is a bit random and lacking evidence base....

Contra21 profile image
Contra21 in reply toHashihouseman

No sorry at all I'm very thankful you take the time to reply. I've been 112 for a week in that week the t4 and t3 went up you think go to 125 as recommended?

Hashihouseman profile image
Hashihouseman in reply toContra21

a week is almost nothing in T4 therapy!

i would add 5mcg T3 in split doses rather than more T4

keep steady for a month then test

Contra21 profile image
Contra21 in reply toHashihouseman

Au difficult to know what to do. How much levo to take, I'm 9 years in and have no clue

Hashihouseman profile image
Hashihouseman in reply toContra21

it took me 9 years to figure it out and I would like to to be good for at least a year to know I have figured it right.

After trying all the standard GP/endocrinologist guidance i realised they mostly hadnt a clue. It seems they work on averages and lab ranges not individuals! And the clinicians have never suggested i aim for the definitive healthy thyroid levels, duh! True normal healthy levels may vary a little according to age sex stage of life etc or an individual may be an outlier but still with their normal healthy levels. But to keep it simple the modal or most common values are :

free T4 c. 15

free T3 c. 4.6

TSH c. 0.75-2.5 depending on circadian rhythm (which is reflected in time of blood test, lowest middle of the day highest middle if the night) but individual ranges may be a little narrower or wider).

meme profile image
meme

I have thousands of ectopics a day almost daily, so do sympathise.

I have a non working thyroid and prefer to take NDT, as I do not get on with synthetics. I did try t3/4 combo earlier in the year but when the t3 was reduced by the Endo the ectopics increased.

I understand that in some cases ectopics can turn into AF in some people, so, after many years of these ectopics I have opted to have an ablation and await a date.

Contra21 profile image
Contra21 in reply tomeme

How do you cope? I have had them for 6 years on and off and panic when they get bad, health anxiety starts. Do you feel yours happened from thyroid? As endo amd drs say no ..

Gingernut44 profile image
Gingernut44 in reply toContra21

You haven’t yet said what dose you’re on or given any up to date test results. If you could let us know what these are, someone could possibly give you some advice.

Contra21 profile image
Contra21 in reply toGingernut44

Ok here they are vit d 65Thyroid antibodies atgii less than 1.3atpo less than 60

Tsh 5.24 ranges 0.4 to 4 . august was 3 never jad a jump like this ever

T3 4.3 ranges 3.5 to 6.5

T4 14.5 ranges 9-25

Zinc 11 ranges 9 to 18

Iron is low as I have thalassaemia can't be changed had it since birth

B12 260

waveylines profile image
waveylines in reply toContra21

What's the range for your B12, result?

Contra21 profile image
Contra21 in reply towaveylines

Just says <180

waveylines profile image
waveylines in reply toContra21

If its not the Active B12 test then 260 is on the low side. Have you been checked for PA with Intrinsic Factor Test and Coeliacs?

Contra21 profile image
Contra21 in reply towaveylines

Endo is testing me.for coolies in 3 weeks but tested in the past and did t have it

waveylines profile image
waveylines in reply toContra21

I also tested negative twice for Coeliacs but since been diagnosed formerly with Gluten Intolerance by a NHS neurologist. I also carry the Coeliacs gene so he thinks it's highly likely I'm actually Coeliacs.Just a thought....

But if its the usual B12 test you heed to adrees this low b12, result. Look in B12d. org it has a symptom checked. I was surprised how many symptoms I had but didn't realise were related.

Contra21 profile image
Contra21 in reply towaveylines

I'll grab a spray or take beef liver supplements

ForViolet profile image
ForViolet in reply toContra21

The dried liver supplements are useless according to Dr Ray Peat and others. And the spray only works for some people. A lot of us are missing intrinsic factor that's needed for absorption in the stomach. That's why you hear of all the people getting injections of B12. Something to consider.

Contra21 profile image
Contra21 in reply toForViolet

Had injections in the past, should I just ask for those?

waveylines profile image
waveylines in reply toContra21

You need to find out that actual b12 range. You could ring the labs that did the test and ask. Better than B12 spray is good. But otherwise best to get a higher dose sublingual one like by 'Noshot' which literally dissolve under your tongue incredibly quickly.

Contra21 profile image
Contra21 in reply towaveylines

So confusing on what to do :( so overwhelming by all of this

waveylines profile image
waveylines in reply toContra21

Contra, what's important is your thyroid hormones are maintained at an optimal level. Optimal is usually in the top third of the actual thyroid ranges (ft4 & Ft3) but everyone is different, some people need them higher to feel well. Optimal means when you no longer have symptoms or signs of hypothyroidism. Endos tend to but not always under treat so unless you tell them you have symptoms of under treatment they will keep levels lower. Your seem a liitle low to me.

When under treated some people like me get a fast heart rate, not a slower one. So it's a good idea to keep a little daily log where you write your daily dose of thyroid hormones plus vits minerals, check your pulse and temp first thing before rising, make a note of how you feel that day, any symptoms or signs and then add your blood test results in as you go. This give a neat record you can look back over to help you spot trends.

Hope this helps.

Contra21 profile image
Contra21 in reply towaveylines

Honestly I don't need optimal levels to feel well. I appreciate you saying that. But never had such a high raise in tsh amd pins amd needles.lefr side of body. My endo is offering t3 now but didn't have t3.result. I just feel maybe it's still crazy as my body had surgery 3. Months ago.. I don't know what to do to feel better I'm so overwhelmed

waveylines profile image
waveylines in reply toContra21

Ahhh didn't realise you had surgery recently. Was this to remove your thyroid?

Contra21 profile image
Contra21 in reply towaveylines

I had my gallbladder removed 11 weeks ago..

Gingernut44 profile image
Gingernut44 in reply toContra21

Well, it’s hardly surprising you don’t feel well

TSH - 5.24 is way too high for someone on Levothyroxine. Most feel better with a TSH of 1 or under.

FT4 - 14.5 (9-25) is 34.38%, should be closer to 75% or thereabouts.

FT3 - 4.3 (3.5-6.5) is 26.67%. That is way too low and it’s low T3 that causes most, if not all, hypo symptoms.

What dose of Levo are you on - whatever it is, it’s way too low or you’re not absorbing it 😱

Contra21 profile image
Contra21 in reply toGingernut44

I was ok in August tah was 2.8 and a sudden jump this last month. I've had a low tsh before and felt equally as worse. I don't mind being tired just don't want the ectopics and they seem to cover good levels or bad.. but never had a tsh this high.

Gingernut44 profile image
Gingernut44 in reply toContra21

Forget the TSH, it’s the FT4 and, more importantly, the FT3 results you need to concentrate on. Your thyroid has been destroyed by RAI so your TSH is not really relevant any more, except when it’s as high as yours. Even your TSH of 2.8 in August was too high. What were your FT4 and FT3 like in August?

Contra21 profile image
Contra21 in reply toGingernut44

T3 was 3 and t4 was 15 but felt fine

I focus on tsh as all endo talks of

Gingernut44 profile image
Gingernut44 in reply toContra21

You need to change your Endo, s/he will keep you ill.

Contra21 profile image
Contra21 in reply toGingernut44

I agree but to find one that cares and helps is slim. I'll keep trying .

Hashihouseman profile image
Hashihouseman in reply toGingernut44

with respect.... :) saying all that comes from anecdotal guesswork and is not evidenced by large population studies. Lab ranges are almost random and not scientifically associated with wellness by a percentage whereas euthyroid levels are studied in many large scale population studies and cluster around 15 ft4 4.6 ft3 1.0 - 2.5 TSH. higher ft4 may be a signiciant risk for cardio myopathy....

onlinelibrary.wiley.com/doi...

Contra21 profile image
Contra21 in reply toHashihouseman

Even if all heart tests are clear?

Gingernut44 profile image
Gingernut44 in reply toHashihouseman

That may all be well and good for those without thyroid dysfunction but we’re taking about someone (me included) who has had their thyroid destroyed by RAI with all the extra problems that particular treatment brings and, “with respect” I don’t think a large population study has been done on those who have had RAI treatment. I can tell you with absolute certainty that when my FT4 was at 15 (12-22) my TSH was at 7.5 and I felt like the living dead. Of course, this was an NHS blood test so no FT3 was measured. I really don’t think you can state what any one persons TSH, FT4 and FT3 should be from any large population study on perfectly healthy people.

Contra21 profile image
Contra21 in reply toGingernut44

I felt that. So deeply the living dead. My hearts feeling unwell and in so anxious and feel the increase did this now scared to have increase

greygoose profile image
greygoose in reply toGingernut44

Totally agree!

meme profile image
meme in reply toContra21

When my t3 was reduced the ectopics increased.

A couple of years ago I had numerous AxE visits because of extended episodes of ectopics. Now I have got used to the feeling and try to ignore them as I have been told they are harmless. It’s difficult ! Atenalol helps.

It will not be the thyroid that’s causing them, yours and mine are both dead. It’s our hormones or, in some cases you can be born with bits of the heart that cause electrical problems .

Some people find Magnesium helps.

PM me if I can help you any more.

Batty1 profile image
Batty1

You might find this article interesting.

verywellhealth.com/thyroid-...

Contra21 profile image
Contra21 in reply toBatty1

Made.me anxious

Batty1 profile image
Batty1 in reply toContra21

What made you anxious?

Contra21 profile image
Contra21 in reply toBatty1

Was about how thyrod gives you heart problem

Batty1 profile image
Batty1 in reply toContra21

Getting anxious over Heart Disease and Thyroid issues isn’t going to solve anything just amplify your symptoms and your anxiety you just need to read and understand your thyroid condition and just because articles say this or that you have to understand not everyone will have this or that …. How much thyroid medication are you on and what brand?

Contra21 profile image
Contra21 in reply toBatty1

100mg euroxstig

Batty1 profile image
Batty1 in reply toContra21

Add this info to your original post so others who are familiar with your brand of medication will be able to help.

Gingernut44 profile image
Gingernut44 in reply toContra21

That dose is clearly not enough. Are you taking it on an empty stomach with no other meds or vitamins at the same time, an hour before eating or drinking anything other than water?

Hashihouseman profile image
Hashihouseman in reply toGingernut44

.....it may be a perfectly adequate T4 dose but need a little T3 to stabilise TSH in normal healthy range, TSH should not be supressed and ideally still have a circadian rhythm (unless there is a clinical reason to supress TSH).

Contra21 profile image
Contra21 in reply toHashihouseman

In sorry I don't understand this very academic 😅

Hashihouseman profile image
Hashihouseman in reply toContra21

show it to your endocrinoologist!!!🙃

Contra21 profile image
Contra21 in reply toHashihouseman

I dod , all my research he said this is why you have anxiety dr google then vlamed my ectopics on anxiety. I feel a mess amd no support from him. Confused on what dose to take as he scared me with "your tsh is high, you have absorption issues, maybe you need to see a gastrointestinal dr " I was like what the hell it's been 6 weeks this increased I just had surgery. What is going on!!

Hashihouseman profile image
Hashihouseman in reply toContra21

your TSH isnt that high at around 5. some clinicians don't even qualify it for treatment if you have a working thyroid gland!

right, anxiety wont help but not being anxious is easier said than done !

you may not be absorbing as well as most but you are getting something from it and as i said you could try splitting the dose and taking 5mcg of T3 also split dose.

and you need a stable regimen for at least a month to test it!

Contra21 profile image
Contra21 in reply toHashihouseman

I'm going to try more t4 first I've never had t3 he scared me with the heart crap

Hashihouseman profile image
Hashihouseman in reply toContra21

in my experience with myself t3 is not as insidiously problematic as t4 which can build up almost unnoticed and according to the studies creates risks of arrhythmias. It takes much longer to reduce the effect of chronic overdosing. If you are careful with t3 it is easier to control because it is fast acting and relatively quick to adjust down (days not weeks) . BUT WE ARE TALKING SMALL AMOUNTS HERE 5mcg maybe 10mcg and introduce and increase slowly! not all at once!... The healthy thyroid delivers the equivalent of about 5-10mcg over 24 hrs with a slight emphasis on the period from midday to midnight.

Contra21 profile image
Contra21 in reply toHashihouseman

He was omg your tsh is way to high as last week was 4 and in a week went higher with a higher dose of 112. How can my absorption change in 6 weeks. Only thing I ate more was dairy

Hashihouseman profile image
Hashihouseman in reply toContra21

a week is way too short a period to judge any effect of T4 !

significantly increased T4, especially in one dose has significant potential to be actually reducing your T3 by negative feedback and therefore raising tsh which the body would usually respond to by increasing thyroidal T3, which you cant do hence the need for lower doses of T4 and small supplemental T3. T4 is not as easy to manage or live with as the medics would have us believe.

Contra21 profile image
Contra21 in reply toGingernut44

I am water and wait an hour ..

Contra21 profile image
Contra21

I.rarely but sometimes take with oj. I take In am and wait an hr before eating. Inly take vit d.for vitamins. Should I now be eating certain foods? Only thing I can think of different is more dairy I've consumed

Gingernut44 profile image
Gingernut44

When taking Vit D you should also take its cofactors, Vit K2 MK7 and magnesium. Vit D aids the absorption of calcium from the diet and Vit K2 MK7 helps direct the calcium to your bones and teeth and away from your soft tissues and arteries where it can cause calcification. Magnesium helps the body absorb the Vit D. They all work together.

You say you felt fine with a TSH of 3 but your FT3 was below range and the heart and brain needs T3 to function so, in my opinion, you really need to get your frees optimal to see if it helps with your ectopic beats.

Contra21 profile image
Contra21 in reply toGingernut44

So don't worry about tsh if it's high? Focus on t3 and 4? What are good he said tsh is important 🤔 he's losing me!

Gingernut44 profile image
Gingernut44 in reply toContra21

No, I said TSH isn’t relevant UNLESS it’s too high. Basically, when you no longer have a working thyroid, the most important tests are FT4 and FT3 but you need to take enough exogenous thyroid hormone to feel well.

Contra21 profile image
Contra21 in reply toGingernut44

I've invested and my heart isn't happy. I'm so anxious and scared of the symptom scared to start the 125

Gingernut44 profile image
Gingernut44 in reply toContra21

Your anxiety is not helping you. Why not try 112.5 and 125 alternating and see how you feel. If you find it too much just try 125 once a week for a couple of weeks and twice per week for a couple of weeks and so on. Low and slow.

Contra21 profile image
Contra21 in reply toGingernut44

Why did the endo say " doesn't work like that" you need 125 every day" your tsh is over 5 now . My ectopics wasn't good last night and scared

Gingernut44 profile image
Gingernut44 in reply toContra21

But it’s not your Endos body, it’s yours. Ideally, you should be taking 125 per day but if anxiety is getting the better of you then why not start with every other day for a few weeks.

Contra21 profile image
Contra21 in reply toGingernut44

It the extopic beats that are crippling me and scared it's from the med increase. I'm alone have no one it's difficult.

Gingernut44 profile image
Gingernut44 in reply toContra21

But reassure yourself - you’ve been told there is no actual heart problem.

Contra21 profile image
Contra21 in reply toGingernut44

Guess just reading ppl saying things about heart problems and no thyroid os scary

radd profile image
radd

Contra21,

I experienced AF when medicating only Levothyroxine for four years. My experience is much the same as Hashihouseman, in that I couldn’t medicate enough Levo dose to get high enough FT3.

My heart beat was all over the place with huge bangs in the night that absolutely terrified me. Once I had a huge bang whilst out walking and it nearly made me fall over.

When thyroid meds can not be utilised properly they can cause very dangerous side effects that medics appear totally unaware of as are only concerned with the TSH.

Medicating Levo alone made me extremely unwell and I agree with Hashihouseman in that you may benefit from the addition of T3 meds. These hormones do not work in isolation and many of us only require a little bit of T3 just to get T4 working as it should.

Like all our organs the heart is very dependant upon adequate thyroid hormone levels but seems even more sensitive to the incorrect ratios of T4:T3. Heart issues are very common on the forum and mine have completely reversed since medicating combo meds.

Contra21 profile image
Contra21 in reply toradd

Ong that's so scary. My biggest fear. I've been on levo 9 years. I just increased to 125mg . 3rd increase in 9 years. Dr said t3 will give me more ectopics so I'm not a candidate. Boy did I understand when you said bang! Did you figure this out all yourself or have an endo help you? I have to get another endo but he's my 4th one no one gets it!! I can't live this way. How do you know your levo is ok or need t3,?

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

Do you have your latest fT3/4 levels? Are you a good converter?

I'm with Radd thinking ectopic beats are more likely caused by a deficiency, could be low fT3 or perhaps iron levels?

Contra21 profile image
Contra21 in reply toTiggerMe

Tsh 5.24 ranges 0.4 to 4 . august was 3 never jad a jump like this ever

T3 4.3 ranges 3.5 to 6.5

T4 14.5 ranges 9-25 don't know if convert good endo is horrible taught me nothing

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

So your levels are low and conversion isn't bad...

TSH 5.24 mIU/L (.4 - 4) 134.4%

Free T4 (fT4) 14.5 pmol/L (9 - 25) 34.4%

Free T3 (fT3) 4.3 pmol/L (3.5 - 6.5) 26.7%

T4:T3 Ratio 3.372 

If your previous test showed a TSH of 3 then you were under medicated then too!

As a general rule when on T4 a TSH of around 1 is where to aim... this increase will certainly help but you might need another in 8 weeks time 🤗

Contra21 profile image
Contra21 in reply toTiggerMe

When my tsh was 1.8 my ectopics were the worst and t4 was 12 and t3 8. So hard to figure out why they happen. Do I need to do t3 or os my increase nthe right thing?

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

Those are strange results! What dose were you on? This again makes me think it is low iron causing the issue, have you had a full iron panel?

Contra21 profile image
Contra21 in reply toTiggerMe

Tsh 1.99Ft4 12.3

Ft3 3.5 jusy looked in 2019 when I was crippled and scared of being there again. Felt my worse. I was on 100mg I have full.panel I have thalassaemia so haemoglobin always low amd lose all the work I've done when I get my.period. tried it all.

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

I'm going to have to go back to the beginning of this post as I'm obviously missing something looking at  radd 's answers as she always gives top notch advice

Should you not be getting transfusions though?

Contra21 profile image
Contra21 in reply toTiggerMe

I'm sorry very sorry I just feel so dismissed by my Dr. I don't have afib scared of getting heart problems.all recent heart tests ok but feel off last few days. Those old number I just posted I felt my worst so how can a lower tsh male you better. I felt ok in tsh of 3 with give or take the lasyest t3 amd t4 but dr said tah is increasing so increase meds.

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

No reason to be sorry 🤗 I don't want to give any duff advice

If you know you feel better with a TSH of 3 and you are currently at 5.24 then an increase in T4 sounds like it is going to help, finding your own personal sweet spot is what it's all about

Your previous results seem to jump around so it is hard to find the pattern and if radd thinks a combination approach is the better route I absolutely bow to her greater knowledge and experience

radd profile image
radd in reply toTiggerMe

E, Stop it now! 😁

O/P says she has thalassaemia so I think your reference to iron issues could be a major contributory cause.

Contra21 I have to go now but can explain the importance of iron later and how extremes can incapacitate our thyroid hormones.

Contra21 profile image
Contra21 in reply toTiggerMe

Iron transfusion won't work for meas I'm thallesemic and will damage my.liver long term.

TiggerMe profile image
TiggerMeAmbassador in reply toContra21

Sorry, words muddled blood transfusion?

Contra21 profile image
Contra21 in reply toTiggerMe

Ino blood transfusion. That's what endo said increase until ush is 2 or 3 then return to 100mg

radd profile image
radd in reply toContra21

Contra21,

Generally FT4 labs will be too high in range for the amount that you as an individual actually need. The heart issues are a combination of an excess of FT4 and inadequate FT3 levels.

Answer - reduce Levo and introduce T3. A usual successful protocol would be to reduce Levo by 25mcg + 5mcg T3. Later labs would allow accurate titivation of both hormones.

For us patients the issues are -

1. T3 is not encouraged on the NHS and its essential actions not known by primary carers.

2. Even if you get through the net and an endo prescribes T3, many GP’s are then reluctant to take over your care because they don’t understand the labs that present differently.

3. CCG’s (now called something else) are prone to suddenly withdrawing meds. This happened to me twice!

4. You can buy T3 from abroad without a prescription and self medicate (which is common on the forum and members will advise) but because medicating T3 changes your labs quite substantially, it is difficult to hide from your GP, and who basing his prescription assessment on your labs might then reduce your Levo dose.

The sad truth is medical science is still behind what patients know to be true, and what medical science has established is still years from filtering through into medical practice. GP’s aren’t bad people, they just haven’t been trained to understand complex thyroid issues and comprehensive thyroid labs yet.

radd profile image
radd in reply toradd

Contra21

Additionally  TiggerMe ’s reference to low iron is prudent.

Some members can not tolerate the correct amount of Levo they need to regain wellbeing if iron levels are low. Symptoms again may present as AF.

Answer - try raising iron as a priority before reaching optimal Levo dose to see if heart issues reduce. If iron levels are adequate then this clearly isn’t a probable cause of the AF.

Contra21 profile image
Contra21 in reply toradd

I don't have afib I'm scared of getting it. As for my iron i have thalassaemia so i always have low iron bit i know that osnt the cause of ectopics. I don't know what I'm doing, is the increase right, why my tsh suddenly went up. This is my 4th endo and are all idiots. He's is so focused on tsh amd said I need the increase.

radd profile image
radd in reply toContra21

Contra21,

I sympathise with you as went through my share of idiots too. It can seem hopeless and this is when you seek solace, support and possible advice from the forum 😊.

T3 meds can be dangerous in the wrong hands but too little can be as dangerous as excess. We need the correct amount and for many members medicating Levothyroxine that means adding just a little bit of T3. I initially took 20mcg T3 but as my health has improved so has (amazingly) my usage of hormones and now I keep well on 11.25mcg T3 daily (in NDT).

Contra21 profile image
Contra21 in reply toradd

With drs advice,? I've never had it offered until lay well but said I'll get ectopics so he won't give it because of my current symptoms. I know nothing about it. I listen to the drs through this journey. I feel like I'm dying

radd profile image
radd in reply toContra21

Umm, well the thalassaemia will be having profound effects on thyroid hormones physiology. I have haemochromostosis so the other extreme. Too little or too much iron and we're immediately prone to difficulties such as excess RT3.

Do you have regular blood transfusions?

Do you have regular iron panels?

Can you afford a private endo?

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