Graves disease and ongoing heart concerns

[Crabb]

I was diagnosed with Graves disease in September last year and I'm currently being treated with Carbimozole (2.5mg). My symptoms are generally mild now (although my resting heart rate was 140bpm when first diagnosed), but I'm concerned that I still have discomfort in my chest (around the heart) and my resting heart rate is typically between 70-95bpm. I'm nervous to do anything that will raise my heart rate too much. Should I be worried? Has anyone else experienced this?

[PurpleNails Administrator]

What are your current results? Your dosage might need adjusting. Possibly your dose has been reduced too quickly?

Your doctor should investigate as it is still quite high rate, especially as you have chest pain.

[Crabb in reply to PurpleNails]

Hi PurpleNails

Thanks for your reply.

I haven't been tested since January, when I was still on 10mg of Carb, but my results then were:

T4 - 15.3 (range 11-26)

T3 - 3.7 (range 3.9-6.8)

TSH - 2.5 (range 0.35-4.5)

So my Carb was reduced to 5mg and then 2.5mg (although my Endo suggested I go back up to 5mg for a couple of weeks when I started feeling hot and anxious again).

Generally, my symptoms are minimal right now (I work from home and take things easy), it's the feeling of discomfort (not pain) around my heart that concerns me and I wonder whether my heart was damaged in some way when my heart rate (pre diagnosis).

I did mention this discomfort when I last saw my Endo and I asked about my heart, but he brushed this away with "I'm sure it's fine". I'll ask again.

[PurpleNails Administrator in reply to Crabb]

I thought If you are taking carbimazole you should be tested 6 weekly minimum. Your previous post suggested Hashimotos and Graves which means your levels could fluctuate unexpectedly. You are on a low dose of carbimazole but I am surprised you have not had you levels checked in months. You need a current status.

Definitely ask again. Chest pain is not normal. Make a record your rate and raise it with GP / endocrinologist.

[ling in reply to Crabb]

Hi Crabb, did I read you correctly? Your endo reduced your carbimazole from 5mg to 2.5mg with no blood test done?

Were antibodies test done to confirm Graves diagnosis?

As your heart seems to be really worrying you, you might want to see a cardiologist for that, though it would be equally important to sort out your thyroid issues as this is possibly the primary cause of your heart issues.

All the best!

[Crabb in reply to ling]

Hi ling

Thanks for responding to my query. Here's some additional detail...

In mid September 2019, when I was first tested, my results were:

T4 - 64.3 (range 9-24)

T3 - >30.7 (range 3.5-6.5)

TSH - <0.03 (range 0.35-5)

My resting heart rate was 140bpm, luckily my GP had previously been an Endo, suspected Graves' disease and and I was admitted to hospital for overnight observation. I was placed on Carbimazol 40 mg and Propranolol 40mg. I then found a private Endo (hoping for more regular checks) and by 30/10/2018 had the following results:

T4 - 7.1 (range 11-26)

T3 - 2.7 (range 3.9-6.8)

TSH - 8.97 (range 0.35-4.5)

My Carbimazol was then reduced to 10mg and I was taken off propranolol, I also requested the further tests to confirm diagnosis.

27/11/2018

Thyroglobulin Antibody - 700 (range negative = 0-115)

TPO Thyro Peroxidase Abs - 183.03 (range negative = <50

7/12/2018

Trab TSH Receptor antibodies - 3.4 (range 0.0-0.4)

At this point my Endo confirmed his original diagnosis of Graves' disease and not Hashimotos.

Since January I've had two further tests, with the following results:

22/1/2019

T4 - 15.3 (range 11-26)

T3 - 3.7 (range 3.9-6.8)

TSH - 2.5 (range 0.35-4.5)

After which, Carbimazole was reduced to 5mg

13/3/2019

T4 15.6 (range 11-26)

T3 3.6 (range 3.9-6.8)

TSH 1.84) (range 0.35-4.5)

And after this, Carbimazole was reduced to 2.5mg (briefly going back up to 5mg for a fortnight, when I complained of increased symptoms). My next appointment is in September and whilst I mostly feel fine, I am conscious of mild discomfort around my heart (I'm 44 and have never had anything like this prior to Graves). I don't want to make a fuss though, if this is something that is common with Graves'.

[ling in reply to Crabb]

Fantastic. All necessary details are here!

I have Graves too. I will only share with you what's clear to me and what's really helped in my case. All else, you must consult with doctors.

1. In sep 2018, you are quite severely hyperthyroid.

2. In Oct 2018, you were hypothyroid.

Note- when the heart beats too slowly, it can also cause symptoms like palpitations.

Note- responded well to carbimazole.

3. The TraB results confirm you have Graves.

4. TPO and Thyroglobulin antibodies are pretty high.

From my own experience with very high TraB levels, this has implications. It is important to get antibodies levels down to normal asap. My blood test results were in normal range within the first year of starting carbimazole, but I continued to suffer relapses with bad to severe symptoms. The marker which was consistently off was my high TraB level.

5. From Jan 2019, your carbimazole therapy gets a little tricky as T3 is not moving into range. I suspect that one of the reasons is the high antibodies levels. It will take time to correct.

It took about 2+ years on carbimazole before my TraB level started coming down, and about 4 years before it came within range. I was on carbimazole throughout and still am. Carbimazole therapy reduces TraB levels.

Take a look at this, you might find it helpful-

2018 European Thyroid Association Guideline for the Management of Graves’ Hyperthyroidism

karger.com/article/fulltext...

There are a few things that are very helpful and important when treating Graves-

1) Supplementation. Please read around the threads to do with Graves, you'll be able to find advice on these. I never really tried supplementing in a thorough way since money was an issue, and just added what seemed to be needed along the way that was affordable. I started with Vit D and later omega 3 and now Vit C. They have helped more than I expected.

(Have a look at this article. It's about selenium supplementation as part of Graves treatment.

Selenium supplementation caused TraB levels to fall along with FT4 AND FT3. So u need to be careful since your FT3 level is low.

Effect of Selenium Supplementation on Recurrent Hyperthyroidism Caused by Graves' Disease: A Prospec

wellnessresources.com/studi...

2) Lifestyle changes. De-stressing decelerating, a must! Stress hormones tend to "hang around" in Graves and make you sick. Too much physical activity also stresses the body.

3) Optimise your diet to maximise your physical condition. Graves is treated on all fronts. If all cylinders are firing right, there's a better chance the Graves will go into remission.

4) Boosting the immune system. I have to come back to you on this. It is important.

5) Keeping the Graves in control is paramount to keeping other autoimmune diseases eg. Type 1 diabetes, at bay.

Re heart. It could be that the carbimazole needs more time to work to stabilise the heart? But do see a cardio if it's really bothering u. An Echo can test your heart function. And u could consult the doctor about the fast resting heart rate.

Take care.

Btw, when u write T4, T3, I take it it is FT4 FT3.

[Crabb in reply to ling]

Hi Ling

Thank you so much for taking the time to respond with such detailed and helpful advice.

I've recently started taking the following supplements:

Vitamin C

B12

D

Acetyl-L-Carnitine

and I ordered COQ10 today. Will let you know how I get on.

Luckily I work from home, which means I have minimal work stress, but I do travel overseas every 1-2 months and my symptoms become much more apparent then. Right now, my only exercise is gardening, since this allows me to move at a slow pace and avoid raising my heart rate too much.

I would really like to see an Endo who is interested in Graves, despite going private, I get the sense that mine isn't. If you have any recommendations for London and the Surrey/Hampshire area that would be great. In the meantime I will ask mine for a Cardio referral.

Thanks again!

[ling in reply to Crabb]

Yes please update here how it goes, that would be great! Every body can learn from each other. That's the beauty of this forum.

Is it ok to ask?

Any idea what caused your Graves?

[Crabb in reply to ling]

I suspect it was stress; relocating my family after many years overseas and then a year buying and renovating a house.

[ling in reply to Crabb]

Yes that would have been really stressful. Genes would play a part too if there are thyroid or other autoimmune conditions in the family, that predispose you to something like Graves

[ling in reply to Crabb]

Great to hear about the supplements! I hope to start a multivitamin soon. In the mean time, have started adding Tumeric for curcumin, during cooking.

[ling in reply to Crabb]

Re heart rate. FT3 I'm sure has something to do with the heart and its functions. Maybe if levels are low, it can cause problems.

The mild discomfort around the heart, could be due to the fast resting heart rate?

[ling in reply to Crabb]

My apologies, I do not live in the UK. But wherever we are, I think trying to find good thyroid doctors is akin to looking for a needle in the haystack. Sadly.

I'm seeing an endo in 2 weeks. One that is supposed to be trained in the thyroid. Well we'll see how it goes.

[Crabb in reply to ling]

Good luck! They do seem few and far between.

[Greekchick in reply to ling]

Hope all goes well for you !

[ling in reply to Greekchick]

Thank you.

How are u doing?

[Greekchick in reply to ling]

Better - I have endo Monday and we will see 🤞🤞

[MiniMum97 in reply to Crabb]

Your T3 is below range at the moment so your symptoms may be because you are actually underactive. Symptoms of an under and overactive thyroid can be quite similar.

I have Graves and suspected hashis and when I am underactive I have both cold and heat intolerance for example (not just feeling cold all the time). You can also get palpitations from being both under and overactive.

I would go back to your GP and ask for a referral to cardio for the heart pain. I have not heard anywhere before that this is a symptom of Graves.

Please don’t take Acetyl l carnitine while your thyroid hormones are low. It is likely to make you very unwell as it inhibits thyroid hormones getting into the cells. It is something that can be taken when you have an overactive thyroid to inhibit the effects of excess thyroid hormones.

I would want to come off carbi completely in your situation as your hormones are below range and could well be causing your symptoms. In fact this is what I was advised by my endo when the same thing happened to me (below range T4 and T3). I am now in remission from Graves and back on levothyroxine.

[Crabb in reply to MiniMum97]

Thanks so much for the helpful advice. I’m so sorry for the delayed response, I’ve been busy travelling (not good for the stress). Symptoms seem to have calmed down a bit, so I haven’t yet seen the Endo (to be honest, I haven’t had time either). Will see how things go over the next few weeks, but I would like to get and up-to-date blood test, so I know where things stand.

[ling in reply to Crabb]

Hi Crabb, how are u doing?

Re boosting the immune system.

What started as general preparation for cooking, has turned out to be a fantastic form of immune system booster.

After cooking on a regular basis with ginger, onion and garlic, those in the family who used to be susceptible to cold coughs and flu, have reduced these occurrences to almost zero! And lately, we've learnt that aside from these 3 natural immune system boosters, Perilla leaves and cabbage also have the same benefits!