Hi all i have a q, has anyone been on thyroxine after rai from graves amd subsequently became hypothyroid. Can u develop heart problems from being in thyroxine forever. Last 4 yrs I've had ectopics on amd off and don't know where they are coming from I worry could my thyroid give me heart problems in the long run.
Heart and thyroid : Hi all i have a q, has anyone... - Thyroid UK
Heart and thyroid
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Contra21
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Ectopic beats aren't generally considered a "heart problem". They are very common, usually harmless, and generally require no treatment unless they occur very often or are very severe.
My concern is can heart problems develop from being on thyroxine forever from not having 1 anymore
Levothyroxine doesn't cause heart problems, it's a bio-identical substitute for your own endogenous thyroid hormone; but being un- or under-medicated can damage your heart, brain, bones and just about anything over the long term. There are members here, like me, who have been taking Levo for 40 plus years.
Do you ever suffer ectopics out vertigo oit chronic tinnitus
We are all individual in what combinations of health conditions we have, and how they affect us. So I don't have tinnitus or vertigo but I do have balance problems due to my essential tremor and my kyphoscoliosis. I also have ectopic beats but whether that's just because they're so common or because I have an aortic valve problem, probably from birth, it's not possible to say. I see that you've raised these concerns on a number of occasions and that Marz gave you some excellent advice in this forum, regarding the possibility of adding T3 to your T4 - did you investigate this further, and raise it with your Endo? I see that you have been tested only for TSH and FT4, and your last results indicated you are probably under-medicated; but without knowing your FT3 its not possible to know exactly what's going on - it might be expected to be low because you are taking too little Levo, and/or because you inadequately convert T4 to T3. Did you pursue this as Marz suggested? I note also that you see your Endo every 8 weeks even though it's been some years since you had your TT and RAI, whereas in the UK once tests results are balanced, we would only expect to be tested and reviewed annually. I wonder if this frequency of visits is adding to your anxiety - it certainly would wind me up, and I avoid and resist any Dr involvement in my thyroid as strongly as possible. But the first thing is for you to have a more comprehensive set of tests if you haven't had them, not only of TSH, FT4, and FT3, but also Ferritin, Folate, Vit B12, and Vit D, to get a fuller picture of your health - there are vitamin and minerals that are key to good health and effective utilisation of our thyroid hormones whether endogenous or exogenous.
Low nutrients can cause chest pain and altered heart rhythm.
For example ...
Low iron or low ferritin can cause chest pain.
Low potassium can affect the heart rhythm.
There are unpleasant effects on the heart of several minerals and vitamins being low. And low nutrients is a classic problem in hypothyroidism, which is why so many of us take rather a lot of supplements. Unfortunately, doctors have no training in nutrition and nutrients, and are also told that any test result in range is "normal" and can be ignored, even if it matches the bottom of the range or is a bit under.
I am convinced there is a gender problem too and that having low nutrients is far more likely to be a female problem than a male problem. Any health issue that is mostly suffered by females is assumed to be minor, and any effects of low nutrients are assumed to be exaggerated by patients.
You might find this research paper of interest :
Thyroid and the Heart
ncbi.nlm.nih.gov/pmc/articl...
How much of it you read is up to you of course, but try and read the Abstract and the Introduction at least. The whole paper is heavy going!
And this paper is also interesting (and has a scary title!)
Low-T3 Syndrome
A Strong Prognostic Predictor of Death in Patients With Heart Disease
ahajournals.org/doi/full/10...
If you want to find more evidence of the effect of thyroid hormones on the heart try searching for something like :
1) thyroid and the heart
2) T3 and the heart
3) thyroid and heart failure
4) thyroid and heart disease
5) low T3 syndrome and the heart
in these repositories of research papers :
I'm scared to read it.
To summarise - they are mostly saying that Low T3 is bad for the heart.
So higher thyroxine to avoid lower t3?
I've just noticed I didn't answer your question.
T3 is the active thyroid hormone which makes people feel well (in the right amounts) and ill if the level is too high (hyperthyroidism) or too low (hypothyroidism).
A healthy thyroid produces some of the T3 the body needs (about 20% of the total needed for good health - but I wouldn't swear to the accuracy of that). T3 can also be produced by conversion from T4. That conversion takes place in various tissues and organs in the body but mostly in the liver.
Some people can convert T4 to T3 very well. Hypothyroid people who do convert well will often do well on Levo treatment only.
But there are some people who don't convert well and they tend to do poorly on Levo. They may need to take NDT or add T3 to their dose of Levo or take T3 only in order to feel well.
Unfortunately, pharma companies and the medical profession have decreed that the only treatment required for hypothyroidism is Levo. So anyone who can't convert well is left to be ill.
If people can't convert T4 to T3 very well then increasing the dose of Levo usually won't help. Instead, T3 will stay low, T4 will get high, and the patient will end up with high levels of Reverse T3. Converting T4 to Reverse T3 is the body's way of getting rid of excess T4.
Of course, there are some people who can convert well but they simply aren't prescribed enough Levo. In that case the patient needs an increase in dose of Levo.
I have Graves and had RAI and have heart problems but I believe it's more to do with the long term damage of Graves wearing the heart out than the treatment for hypo.
Ectopics are a nuisance but are considered a normal benign occurrence but if they are causing you severe symptoms such as passing out then you need treatment.
You still have graves?
Graves does not go away! It is an autoimmune disease.
But I've had my thyroid removed?
Yes so the antibodies can no longer attack the thyroid and make it hyper. But the underlying graves is still there.
SlowDragonAdministrator
Is your thyroid dose correct.
Presumably you are only on Levothyroxine?
How much Levothyroxine are you currently taking?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you had Graves' disease
Add you on strictly gluten free diet? This can help too
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water . This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Add results and ranges if you have them
I see the endo every 3 months but he suggested every 6 now. He feels I go to often. As I sit here with excruciating eat pain drs say vestibular migraine but after today my tsh went up . 2 mths ago tah was 1.99 and now 3.82 he tested t4 but land forgot t3. My ectopics have slowed down but I got b12 shots amd taking cq10 as I looked back 6 mths of rests and even on tSh of 1.24 i still had ectopocs. I sont know what to do to feel better! Whether my tah is low or in the high er numbers I still get same symptims. I'm sook upset and scared of my future
The most important results are FT3 and FT4
TSH is often extremely low when on adequate dose of Levothyroxine
All four vitamins need to be optimal too
If you are in the UK getting FULL Thyroid and vitamin testing privately is next step
There are many things that can improve irregular heartbeat
Vitamin levels need to be optimal - vitamin D, folate, ferritin and B12 need testing regularly
Improving low vitamin D/magnesium
Going strictly gluten free often helps too after Gravex or with Hashimoto's
Obviously getting thyroid levels correct is essential. FT4 in top third of range and FT3 at least half way in range
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
7 yrs of this and yes I do it all. Gluten free or not it's the same. Magnesium doesn't help gives me dizzies. B12 was 380 last week got a shot pfn3 rounds. But d a little low and well aneamia had it my whole life. Never had a problem with my ectopics and aneamia ever so I know iron isn't to blame. I'm going to try liver capsules as I'm eat liver weekly and nothing is increasing. As of today tSh is 3.82 amd t4 is 12.2 ranges 9-19 amd 2 mths ago tsh was 1.99. Im trying everyrhing and even at 1.99 my ectopics we're bad.
Well your thyroid results show levels are way off
TSH is far too high and FT4 is very low
FT4 only 30% through range
Should be at least around 70%
Useful calculator for working % through range
How much Levothyroxine are you currently taking?
How long on that dose?
Anything changed recently....different brand of Levothyroxine?
Any other medication?
You need to see GP and request 25mcg dose increase in Levothyroxine
Bloods retested in 6-8 weeks
Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine
(Many of us need TSH nearer 0.2 than 2.0 to feel well)
See box
Thyroxine replacement in primary hypothyroidism
pathology.leedsth.nhs.uk/pa...
2 mths ago my tah was 2. I still felt bad. Drs say I'm in range so won't give me I crease and when I do I still feel horrible
I'm on 100mg mon we'd fri sun and every other day 50mg that's dose I think nearly 2 yrs
So you need to see different GP ....if still won't give you dose increase you need to see an endocrinologist
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists
thyroiduk.org.uk/tuk/About_...
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
nhs.uk/medicines/levothyrox...
Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
Guidelines on dose by weight - after RAI likely to need full replacement dose. That's approximately 1.6mcg Levothyroxine per kilo of your weight
healthunlocked.com/thyroidu...
I see Endo every 2 months . Results are from him the wrong increase plus vertigo tinnitus I'm in hdll
Most endocrinologists are Diabetes specialists and useless on Thyroid
As eminent thyroid specialist said at recent talk .....if a diabetic came to see him, he wouldn't know how to treat them. Why would a Diabetes specialist know how to treat a thyroid patient
Thyroid is extremely complex and woefully misunderstood. Hence over 102,000 members on here
Correct treatment should restore FT4 and FT3 to optimal levels
BEFORE seeing any thyroid specialist we ALWAYS recommend getting FULL Thyroid and vitamin testing privately
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctort please email Dionne at
tukadmin@thyroiduk.org
I live n Australia.
Same guidelines apply
Several members on here from Australia
Tinnitus and dizziness often low B12. Extremely common when under medicated
Posts mentioning Australia
If you are worried, get an appt with cardiology for a 24 hours Holter monitor and possiblely an echo. My cardiologist said it was nothing to worry about even though I had constant ectopic beats, not just double but 4s and 5s in a run. Low T3 is associated with a greater risk of heart problems. I found that meditation and increasing T3 helped a lot and they hardly bother me now.
I've done all that. I don't know what to do how did you heal rhem
Meditation and T3. Still get a few but nothing like I used to, Free T3 isn't much different, oddly enough, even with increased dose.
How did you increase t3
Getting Levothyroxine dose high enough to get FT4 in top of range (TSH likely to be under 1)
All four vitamins optimal
All these should improve low FT3
Essential to do these steps first
I increased my intake of T3, my free t3 didn't actually rise much (don't know why)
I'm so sorry that your experiencing palpitations being on Levo only . I had TT and was dosed for many years with T4 only . I can tell you from my personal experience that adding a small dose of NDT/T3 made a huge difference for me . The heart has receptor sights for T3 .
In addition you would need to run lab test with FT4 FT3 . This will tell you if you are a good T4 to T3 converter . Also you would need to know your Iron levels . Low Iron levels can cause palpitations as can low magnesium . Fish oil can also help you with palpitations too as can Taurine . You might want to ask on your next Dr's visit to run labs with your vitamin "D" K2 , B12/folate, Iron/ferritin values.
Wishing you wellness .
I had a thyroid storm in July and I thought I was having a heart attack ... I wasn't thank goodness. I have graves and a goitre and my thyroid must have dumped a load of thyroxine into my blood stream and my heart went up to 112 bpm and my blood pressure was sky high - I was sweating and shaking uncontrollably and I collapsed and was admitted to hospital for tests. This disease can affect your whole body including your heart. At this moment my heart is beating too fast and I am breathing slowly trying to slow it down. Read my story on my profile.
I think my ppst is being misunderstood. My thyrpid is out. Im on thyroxine and have been for 7 yrs. New symptoms and old hang sround but ive ever felt well. Can my positiin give me heary problem later on ? Im very anal.and go see endo every 8 weeks. Im always dizzy and my blood are ok just lowish vitamin d and iron but never had it effect me b4 as ive had low iron since 16 now 37 hereditary.
For Levothyroxine to work well we need optimal vitamin levels
Vitamin D at least around 80nmol and around 100nmol may be better
Folate at least over ten
B12 at least over 500
Ferritin at least half way in range
What vitamin supplements do you currently take
Please add latest results and ranges
Members can advise on next steps
Likely your FT4 is too low and Ft3 extremely low
I was hyperthyroid. After treatment I became hypo and on levothyroxine. When I am not taking enough medication I get symptoms very similar to the symptons I had when I was hyper. What you are experiencing could be because your medication is not enough. You need to get ft4 and Ft3 tested at the same time as tsh. Ft3 is the most important result.
Hello Contra
I am with Graves Disease diagnosed 203 and had RAI in 2005 and now I have to manage Graves ( underlying, lingering symptoms ) thyroid eye disease ( a known complication of RAI ) and hypothyroidism.
Graves is an auto immune disease, it's in your blood, your DNA, and ultimately something you will have to learn to manage throughout your life. The worst of the worst symptoms have probably long gone, as when you drank the RAI it will have slowly burnt out, in situ, your thyroid.
The symptoms of Graves Disease can be alarming, frightening, and some seeming odd and unrelated. The thyroid is a major gland responsible for your physical, mental, emotional, psychological, and spiritual well being, including your internal central heating system and your metabolism.
Your metabolism was running fast, hyperthyroidism/ overactive : now you do not have a thyroid, you need to supplement the hormones that the thyroid produces, in order to keep you from going hypo / underactive :
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T4 - Levothyroxine is a pro hormone and you body needs to convert this into T3 which is the hormone that the body and brain need to work properly.
I read T3 is approximately 3/4 times more powerful than T4 and that, on average, most people function well on about 40 - 50 mcg T3 daily.
I just think that after medical intervention for either thyroid surgery or thyroid ablation both T3 and T4 need to be on the patients prescription for if, and probably when needed.
Some people can get by on T4 alone, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both vital hormones dosed and monitored independently to bring the two hormones into balance and to a level of well being acceptable to the patient.
Ultimately, which ever way round you look t this you have lost your own T3 production and realistically ben down regulated by about 20 % of your daily quota of brain and body power.
Your ability to convert the T4 into T3 can be compromised if your vitamins and minerals are not optimal. It is very important that ferritin, folate, B12 and vitamin D are at good levels and not just anywhere in the range.
RAI will have trashed your immune system and body, and you ned to start trying to put back all that has been lost.
Elaine Moore website is a goto for all things Graves. This lady has the disease and went through RAI. She found little help or understanding so wrote a book to help others. She is now a leading medical researcher and her website will help with long term management techniques, covering food, diet, life style, holistic, alternative, stress and all tings relating to Graves. There is an open forum much like this amazing site, where you can ask questions and read and learn from other peoples experiences.
Your Thyroid and How To Keep It Healthy is written by a doctor who has hypothyroidism.
Dr Barry Durrant - Peatfield writes in an easy to understand, sometimes funny manner.
We may not now have this amazing little gland but we do need how to supplement and compensate for it's loss.
There is a lot to take in, and if with the " brain fog " it may seem daunting, but things will improve once you start to take an active role in your recovery. It's a massive learning curve and somewhat disconcerting that the medical profession are not competent in our treatment or recovery in this poorly understood and badly managed auto immune disease.
Hello again Contra,
I forgot to mention another book that might help you with regard to the TSH blood test.
This lady has Graves and had RAI and her book debunks the TSH stating that it is not a reliable measure in Graves patients after RAI and should not be used, and patients need to be monitored on T3 and T4 blood test results.
She also now runs a blog so this might be more easily accessed :
Her name is Barbara S Lougheed and her book and " blog " are entitled Tired Thyroid.
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