Hart and thyroid

[Contra21]

To anyone who had graves then got radio iodine followed by ectopic heartbeats. I'm not coping. Why do they goi away for month or so then return? Anyone elsw like this. Been on thyroxine for 6 years and manage by an endo .

[SlowDragon Administrator]

Do you have any test results you can add

How much levothyroxine are you currently taking?

Do you always get same brand of levothyroxine?.

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially with Graves’ disease

Ask GP to test vitamin levels

Low vitamin D extremely common.

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 vitamins

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

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

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Are you on strictly gluten free diet or tried it?

GF diet helps thousands of Graves and hashimoto’s patients

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

[Contra21 in reply to SlowDragon]

Not about gluten. My heart. Managed by endo 7 years

[SlowDragon Administrator in reply to Contra21]

Yes most patients see endo

Rarely will endo test vitamin levels or run coeliac test or suggest trying strictly gluten free diet

You will see thousands of people on here with Graves who find improving vitamin levels improves heart issues

Low vitamin D often linked with low magnesium. Magnesium is essential for good heart rate and regularity

sciencedaily.com/releases/2...

health.harvard.edu/heart-he...

academic.oup.com/ajcn/artic...

Gluten free diet often has similar affect.

Getting full testing of thyroid and vitamins first step.

Come back with new post once you get results and members can advise on next step

Also Elaine Moore runs excellent website for Graves patients

[Contra21 in reply to SlowDragon]

I had graves not anymore. My vit b12 was 600 but dropped to 400 in 2 months

I use magnesium spray

[SlowDragon Administrator in reply to Contra21]

You still have Graves, even after RAI

Like hashimoto’s, it doesn’t go away

It’s just your thyroid can’t react anymore

Magnesium spray on skin probably too small dose

When was vitamin D last tested

vitamindtest.org.uk

[Contra21 in reply to SlowDragon]

Two months ago it’s just under the limit but the heart thumps flutters are absent for a month or so then return I don’t u derstand

[SlowDragon Administrator in reply to Contra21]

What’s just under the limit?

[Contra21 in reply to SlowDragon]

47

[SlowDragon Administrator in reply to Contra21]

Is this vitamin D test result?

Is this in UK

What’s the unit of measurement

47nmol?

Or 47ng/ml

[Contra21 in reply to SlowDragon]

Nmol

[SlowDragon Administrator in reply to Contra21]

Vitamin D

GP will only prescribe to bring levels to 50nmol. But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function

Made from lanolin from sheep in Australia

Your profile says you are in Aus

[Contra21 in reply to SlowDragon]

Yes endo gave me drops but my ectopics got worse so I stopped. Can low vit cause ectopics? I doubt it

[SlowDragon Administrator in reply to Contra21]

When you supplement vitamin D you often need more magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Bone pain

easy-immune-health.com/pain...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

intechopen.com/books/cell-s...

If vitamin D is low, B vitamins may be too. As explained by Dr Gominack

drgominak.com/sleep/vitamin...

healthunlocked.com/thyroidu...

[Contra21 in reply to SlowDragon]

It’s overwhelming over five years I have done that much research I want to know how other cope. Why won’t these ectopics ever go away?

[SlowDragon Administrator in reply to Contra21]

Personally going strictly gluten free was turning point

Negative test for coeliac....zero gut symptoms

Plus getting all four vitamins optimal is essential

[ilenuca in reply to SlowDragon]

SlowDragon You still have Graves, even after RAI

Like hashimoto’s, it doesn’t go away

Do you have a link for this?

[SlowDragon Administrator in reply to ilenuca]

Suggest you read lots of Graves’ disease websites, eg Elaine Moore

[pennyannie]

Hello Contra

You might like to take a look at the Elaine Moore Graves Disease Foundation website :

There is an open forum much like this amazing forum, where you can ask the members and learn from each other how to deal with Graves.

This lady has the disease and went through RAI back in the 1990's - and finding little help with her health issues after this treatment she wrote a book entitled, Graves Disease - A Practical Guide.

She now writes on auto immune diseases especially, Graves, and how we need to manage the course of the disease throughout our lives, whether before, or after, thyroid ablation or surgery.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 x T4 and 10 x T3 : with T3 said to be about 4 times more powerful than T4 : your body runs on T3 and read the average person needs about 50% T3 daily to function : your body needs to convert the T4 into T3 and if your ferritin, folate, B12 and vitamin D are not optimal you conversion can be compromised and no thyroid hormone replacement will work effectively.

I see that you are in Australia and under an endocrinologist, and am not sure what thyroid hormone replacements are available on prescription in your country.

Can you ask to have a full thyroid panel to include the vitamins and minerals as well as a TSH, T3 and T4.

When with these results start a new post including the ranges and people better able than me will be able to see if there are any issues, that your endo may have missed.

I'm with Graves and had RAI ablation in 2005, and became very unwell some 6 years ago.

I deeply regret having RAI, but have had to learn of my situation back to front.

Thanks to this amazing site and a couple of books I'm much improved, but I am having to self medicate and source and buy my own full spectrum thyroid hormone replacement.

[Contra21 in reply to pennyannie]

Thays scary to self medicate. My endo says im in range over the last 6 years. Anyways goes up amd down and he checks everything. I'm stumped im scars and just want these flutters to.stop forever. Have you had them,?

[Contra21 in reply to pennyannie]

I jad graves and now im on thyroxine forever and have been last 6 yrs. Im petrified.of these thumps and thuds

[pennyannie in reply to Contra21]

I too have Graves and was put on Levothyroxine in 2005 for primary hypothyroidism caused by having the RAI treatment to ablate my thyroid rendering it disabled and eventually burnt out and destroyed.

I was only ever prescribed Levothyroxine - and I decided because of my health issues some two years ago to ask for a trial of T3 alongside my Levothyroxine. I also enquired about Natural Desiccated Thyroid the treatment widely used for over 100 years prior to the introduction of Levothyroxine. I had no help with either of these other thyroid hormone replacements options and was up against a brick wall.

I then decided to do it for myself. I am not suggesting you do this, just telling you of my situation.

I have never had these ' thumps and thuds ' but have read on here of other people experiencing similar health issues.

[SlowDragon Administrator in reply to Contra21]

There are other members from Australia on here.

I believe some have managed to get T3 prescribed

[Contra21 in reply to SlowDragon]

No they say i dint need it and it was never mentioned before i had to ask aboit it. Eactime hIther looked perplexed . After tha i went to 3 endos private more opinions desperate for answers ( totaling 5 over 5 years) for opinions and no all said im ok and writing in range regardless of my symptons. I've just awoken from anxiety in my sleep and fear ecropics hapoening with every thought

[ilenuca]

I have all this too

Lucky us...

[Baggiesfan in reply to ilenuca]

Me too, it's driving me insane, they just don't stop and no one cares x

[Contra21 in reply to Baggiesfan]

You ok

[HashisKate]

Hi, I don’t have graves but do have hashimotos. I’ve been dealing with ectopic beats my whole adult life, but it’s only recently that they are now so frequent I’ve been referred to cardiology. Unfortunately, due to waiting lists here I’ll be waiting months, If not a year, just to discuss next steps (probably a holter monitor). Oftentimes now I end up in a heart rhythm called bigeminy, which is ectopics that are so frequent, they occur every other beat. It feels horrible and is scary as hell. Some things I’ve changed recently to try and help:

*Magnesium citrate in the evenings

*cutting out caffeine

*cutting down alcohol by half

*gluten free / very low gluten

*reduce stress / anxiety (easier said than done!)

*good sleep hygiene

*weighted blanket.

I can recommend watching YouTube videos by Dr Sanjay Gupta, York Cardiology (also on Facebook) who is a cardiologist here in the UK and has done a wealth of free videos on ectopic beats.

It may well be that your thyroid and your ectopics aren’t connected, or they could well be. But if you can’t get prescribed T3, and you know your vitamins levels are within range, you may want to consider trying some of my suggestions.

It’s easy to get stuck in a vicious cycle with ectopics - they make you anxious - anxiety causes ectopics.

I hope you find things that work for you.

[Baggiesfan in reply to HashisKate]

I hope you get answers and help soon HashisKate. I too have episodes of bigeminy, had loads ecgs, had a 3 day monitor on this year but typically settled when on, just ectopics which they say was abnormal but nothing to do about it. I too find Sanjay Gupta good to watch and are doing about the same as you, have switched from magnesium citrate to magnesium glutamate, but still it continues.

I'm hoping now on T3 it will help but as you say, may or may not be connected, I think mine is, stress certainly triggers it sometimes though as the last episode was picked up in recovery post op this February hence the monitor.

[HashisKate in reply to Baggiesfan]

So frustrating that your monitor didn’t pick the extent of the issue up, so many people say that. If you’re anything like me, then that means any reassurance given falls on deaf ears, because they haven’t seen the true extent of the problem!Stress and anxiety are huge issues for me too. I know they may things so much worse, but as I said above, it’s a vicious circle.

Please let me know how T3 effects things for you. I’m a poor converter, but have honestly not bothered to seek out an Endo as know my chances of getting T3 are none (I can’t even get a referral 😂) however, if I could hear that it had helped it may give me the push to try and seek someone privately on the thyroid uk list. It’s something I’ve tried to avoid as honestly I’ve had so many health issues the last few years I could have chucked thousands at private healthcare and I haven’t got thousands (sadly! Bet I’d have less palpitations then 🙈)

Hope things improve for you, all the best 😊

[Baggiesfan in reply to HashisKate]

Thank you, no, no reassurance at all my g.p. telling me lots of people have ectopics and don't even notice them, in fact half the waiting room probably does. Well that was about as much use as a chocolate ashtray, I wish she could have them for a month or two then tell me there's nothing wrong. I have to pay private for the endocrinologist and T3. I agree sometimes I think I'm throwing money away too. Yes, I'm in a better place, less tired, more motivated at times than before so it's definitely helped. I suppose I thought it was going to be a miracle turnaround but unfortunately not. I hope with some tweaks it will improve more but I really just want these ectopics to settle.

Wouldn't it be good to meet others face to face do we could all feel less alone and not that it's in our heads as suggested?

Wishing you all the best too 🤗