Future heart problems

[anetap4545]

Do people who have had rai like myself and on thyroxine develop heart problems later in life?? Is there a connection? I manage my thyroid well and see a dr but seeing another endo as my ectopics are scaring me and unsure if thyroid related. Been checked had tests all ok for heart bit am.curious if we are more suceptsble? My tah is 3.82 2 mths ago was 1.99 and t4 is 12.2 but this time didn't test t3.

[SlowDragon Administrator]

How much Levothyroxine are you currently taking?

Is this always the same brand at every prescription?

Can you add the ranges on FT4

FT4 looks low in range

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...

Clearly your results suggest you are under medicated

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

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

[anetap4545 in reply to SlowDragon]

I have done all this. Always check them I very anal. Just had b12 shots as b12 was 300 . Vit d just a little low but the ectopics are terryfying..Dr said it was fine bit I pushed for injections. I'm going into my second endo as 7 yrs on thyroxine and keeps telling me I'm within range and t3 isn't important. Lots endo say that and I.dont feel.comfortable self medicating.

[SlowDragon Administrator in reply to anetap4545]

What's the range on FT4?

It looks far too low.

Obviously you need FT3 tested

How low is vitamin D?

How much vitamin D are you taking?

What about folate?

B12 was low...common on inadequate dose of Levothyroxine

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...

See your GP to discuss increase in Levothyroxine

[anetap4545 in reply to SlowDragon]

Gp says no to inctrase as dDoes endo. Vit d 53 amd as of yesterday t4 12.2 ranges 9-19 t 3 is 4 ranges 2.6 to 6

[SlowDragon Administrator in reply to anetap4545]

Your results show you are good converter but FT4 is too low, so likely need dose increase in Levothyroxine

FT4 32% through range

FT3 41% through range

Useful calculator for working out % through range

chorobytarczycy.eu/kalkulator

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve vitamin D by self supplementing to at least 80nmol and around 100nmol may be better .

Once you Improve level, you may need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is good as avoids poor gut function.

It's trial and error what dose each person needs. Frequently after Graves or with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

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

healthunlocked.com/thyroidu...

Are you going to be on regular B12 injections?

Recommended on here to also supplement a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

What about ferritin levels

Or cholesterol levels? High cholesterol linked to being under treated on Levothyroxine

[bantam12]

I have ectopics, heart block and afib but I don't think it's the RAI that caused it, my Cardiologists say that being hyperthyroid was the problem.

[anetap4545 in reply to bantam12]

So you have hyper not hypo. I had graves then 3 yrs later did rai.

[bantam12 in reply to anetap4545]

I've had Graves for nearly 50 years, partial thyroidectomy early teens then RAI in my 40s, hypo since then. I think I've had ectopics for a very long time but only diagnosed with the other problems in the last few years.

[anetap4545 in reply to bantam12]

Scared hypo will cause me heart problems already have vestibular migraine it's he'll

[bantam12 in reply to anetap4545]

Well both my sisters and a cousin are hypo, younger one for over 40 years and she doesn't have any heart problems and neither does my elder sister so I don't think you should assume being hypo will cause a problem.

No point in worrying about something you have little control over 🙂

[anetap4545 in reply to bantam12]

Easier said as I have ectopics now chronic tinnitus and.ear pain fullness

[bantam12 in reply to anetap4545]

Anxiety and worrying will only make the ectopics worse, go over to one of the Heart forums and ask them about ectopics. Have a look at Sanjay Gupta videos on YouTube, he's a Cardiologist in York and has done some very informative videos.

[humanbean in reply to anetap4545]

Feelings of fullness in the ears might be caused by Eustachian Tube Dysfunction.

healthline.com/health/eusta...

Don't ignore it. It can cause deafness. If the doctor looks in your ears and says your ears look fine, he or she is an idiot. Eustachian Tube Dysfunction can't be reliably diagnosed by looking in your ears.

[twinkleyt in reply to bantam12]

That is right. I had a ferocious over active (Hyper) Thyroid in 1970. I was only 24 and out of breath at ever stair step and many other symptoms. I had an sub-total Thyroidectomy 4 years later.

In 2007 heart valve disease was discovered and last year developed Hypertrophy aged 74.

[anetap4545 in reply to twinkleyt]

My biggest fear is developed a heart problem

I had graves removed in 2011 and in 2015 started experiencing ectopics. I fear itll get worse I'm.37

So you were on thyroxine for all that time and then heart problem?

[twinkleyt in reply to anetap4545]

No. I was left with a small piece of my Thyroid which 10 years later under ultra sound showed it had grown back to normal but I was no longer Hyper. Unfortunately when my husband was dying from cancer in 1996 my Thyroid went slightly under active and I have been taking 50 mcgs since then.

My sister has been taking Thyroxine for over 30 years as she was underactive after the birth of her 2nd and last child and her heart is exceptionally healthy and strong still at 72.

Hyper /overactive Thyroid gland is well known for putting a strain on the heart due to

making it work harder at an increased speed. I had horrendously scary palpitations usually in bed at night and very high blood pressure during the day.

As you have no Thyroid since your op I read that the average Thyroxine amount in a healthy Thyroid is around 250mcgs . My sister started off on 150 but she had her Thyroid which was not producing enough Thyroxine.

Worry is one of the worst causes for heart problems so I hope you could have an echocardiogram which would confirm or rule out heart problems for your ease of mind.

Good luck

[anetap4545 in reply to twinkleyt]

I have 7 visits and pcs. All ok

[pennyannie]

Hello Anetap

Graves is an autoimmune disease, and as such it's for life, it's in your blood, and your DNA.

There is probably some genetic predisposition, maybe a generation away, and the disease can be triggered by a sudden shock to the system, like a car accident or sudden unexpected death.

Your thyroid was the victim of an attack by your own immune system. Your own antibodies, for some reason decided to attack you thyroid and the thyroid is a major gland responsible for full body synchronisation. The thyroid controls your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

The thyroid is the conductor of all your bodily parts so when under attack the symptoms experienced can be alarming, life threatening for some people, and sometimes appearing totally unrelated and down right " odd " .

The RAI treatment will have slowly burnt out your thyroid, in situ, rendering you hypothyroid. You may well still have antibodies, and may well still have some Graves type idiosyncrasies, but the " over active, hyper, scary symptoms of Graves " will have now been replaced with the " under active possibly disabling symptoms of hypothyroidism " and some of the symptoms of " hyper " and " hypo " can overlap, and you it can get confused.

It is essential that you are monitored and dosed on your T3 and T4 blood tests results.

Graves patients can have a false low TSH - a TSH test without a T3 and T4 means nothing.

A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. If you are on monotherapy with only Levothyroxine - T4 , your body then has to convert this prohormone into T3 the active hormone which is what the body runs on and the brain takes huge " chunk ".

T3 is said to be about 3-4 times more powerful than T4 and the average person requires about 50% T3 daily to function. As you can see, on Levothyroxine alone, you have been down regulated by some 20% of your own well being.

Some people can get by on T4 alone, some people at some point in time simply stop converting the T4 into the T3 and some people simply need both these vital hormones dosed and monitored independently to bring these two essential hormones into balance and to a level of well being acceptable to you, the patient.

As previously detailed it's necessary to get the full blood tests, including the vitamins and minerals, so people better able than me can assess the results and advise accordingly.

Graves is a poorly understood, and badly treated and medicated auto immune disease.

You will need to take an active roll in your recovery, and I know this all sounds daunting as I was once, where you are now. It's a massive learning curve, but you will need to be helping yourself to get better.

You might like to look at the following :-

Elaine Moore has the disease and went through RAI treatment. She found no help so wrote a book o help other people. She is a medical researcher and has now a well researched and well respected website, much like this amazing site. It is Stateside but it's full of information specific to Graves sufferers, with an open forum where you can read and learn, like this site, from other people in a similar situation.

Dr Barry Durrant - Peatfield is a doctor who has hypothyroidism. I think his book is a goto Your Thyroid and How To Keep It Healthy it is easy read and we need to know what this amazing little gland does so we can try and compensate accordingly.

P.S. Your T4 is very low in the range - this will impact on your level of T3 :

T3 is THE most important thyroid hormone to be measured :

Your TSH can and must be kept very low, even suppressed, your thyroid doesn't need any stimulating, it's been burnt out and destroyed by the RAI -

[pennyannie in reply to pennyannie]

Here is my reply from 4 years ago - if it helps :

[anetap4545 in reply to pennyannie]

Thank you I guess I was feeling ok for a year and now this. I don't know how to keep it at a good range fluctuate every 3. Months never the same but this is the highest tsh I've had in years.

[SilverAvocado]

Hi Anetap4545, I don't believe that RAI could cause the symptoms you mention, but bring undermedicated could.

Thyroid hormone is needed by every cell and tissue in the body to work properly. When we don't have enough hormone, almost anything can go wrong, including heart problems and some of the other symptoms you've described.

A few thyroid panel results you've mentioned:

Tah (I think TSH): 3.82

TSH: 1.99

FreeT4:12.2 (9-19)

FreeT3: 4 (2.6-6)

These are very undermedicated results, so it's no surprise you're having symptoms.

The TSH stands for thyroid stimulating hormone, it's the body's signal it needs more hormone, so it rises when hormone is low. A healthy person would have a TSH of between about 0.8-1.8, but once on thyroid hormone most people feel best with it pushed a bit lower. Yours is very high still.

FreeT4 and freeT3 show how much hormone is available in your blood. The most important is the T3, as this is the active hormone, most people will feel well with this high in range, in the top third. Yours is below half way.

I would suggest a dose increase of 25mcg of thyroxine.

B12: 300

Vit D: 53

Looking at vitsmins these look a little low. Being hypo trashes our vitamin levels. There is advice on how to supplement on the forum. Vitamin D is quite straightforward to supplement, just make sure you are also taking vitamin K, many good supplements have it included. For B12 you need a good B-complex at the same time to keep them balanced.

[anetap4545 in reply to SilverAvocado]

Thank you for making your response easier to understand. Ive told endo they say I'm within range no need to increase now I'm seeing another to see what he will say.

[SilverAvocado in reply to anetap4545]

That strategy sounds good! Keeping your hormone this low while you've got symptoms will keep you ill It's a good idea to search around for doctors who will adjust your hormone and want to get you feeling better.

[anetap4545 in reply to SilverAvocado]

That's the hard part as they all say I'm ok :(.

[SilverAvocado in reply to anetap4545]

Hopefully eventually you will find a good doctor who will help you.

The only tip I have is to make sure you tell them clearly that you still have symptoms and the thyroid hormone hasn't returned you to how well you were before you had the RAI.

Also it can be helpful to take someone in with you, anyone will do just as a witness. But if you have someone who will be assertive and help you ask difficult questions, then even better.

[humanbean]

I'm hypothyroid. I have various issues with my heart (fast heart rate, ectopic beats, pain) when my serum iron and ferritin levels get low. I've been checked out for heart attack quite often and I'm always told my heart is fine.

Have you got any results that are iron related?

[anetap4545 in reply to humanbean]

I do. But never had this before from iron and had it since 16 bit 37 thallesemia

[humanbean in reply to anetap4545]

If you could post your iron and ferritin results we could tell you whether they were adequate. It is better for iron to be optimal though, rather than being just "adequate".