seeing Endo for first time

[Torquaygirl]

this is my first post.

I was recently in hospital for atrial fibrillation, knowing that my TSH levels had been outside of reference range (low and slowly dropping) I asked the dr to check my thyroid again. I only have what they told me my TSH was low at 0.14, ( ref range 0.35-4.94)I think T3&T4 were ok. They asked endocrinology for advice and because cardiology had to put me on Amioridone they have started me on Carbimazole 5 mgs once a day( it affects the thyroid too). They told me I can only have amioridone for 3 months.

I also have Sjogrens and specialist tells me a third of people with Sjogrens have thyroid problems. It’s all building up against me, they are wondering if I have Graves and they did antibodies in hospital but I was discharged the day they did them so results next week hopefully. Endo say I am sub clinically hyper. I see Endo on Wednesday.

interestingly since discharge I have realised I have been getting symptoms over the summer, tremor in hands, feeling whizzy, exhaustion and am wondering if the AF is caused by it too! Sadly no weight loss!

I am wondering if anyone else on here is sub clinical hyper? With symptoms?

Any advice when I see Endo, I have a list of questions ready.

thanks

Ps not completed my profile yet as wanted to see Dr first

[Jaydee1507 Administrator]

Welcome to the group.

Can we have more of a time line of events here?

When did the hyper symptoms and blood results begin in relation to when you had IF and started on Amioridone?

We have had several members recently started on Amioridone and it has affected their thyroid function. It could just be that this medicine is the problem for you as opposed to having any separate thyroid condition such as Graves.

I will tag in waveylines who has person experience of this.

It will be interesting to see what antibodies they tested and what the results are. Do start a new post when you have them.

[Torquaygirl in reply to Jaydee1507]

Hi I started getting symptoms I would say May June time. Started getting raised pulse in August now I look back at Fitbit. Also intolerance to heat with heavy sweats. My Fitbit sent me alerts about possible AF 10 th September and admitted to hospital on 14 th September. I started Amiodarone on the 19 th September. So after all the symptoms started.

My TSH has been under review for last 18 months as slowly dropping.

Feb 2021 TSH 0.26

June 2021 0.30

Thyroid peroxidase antibody negative done by GP but no others

TSH 0.26 march 2023

T4 level 13.6 (9.0-19.0)

also Ferritin and iron levels have been on the low side.

[Jaydee1507 Administrator in reply to Torquaygirl]

So you had slightly low TSH results prior to beginning on the Amiodarone.

Your TSH is only very slightly below range. I wonder if starting carbomazol might just muddy the waters more than necessary at this point. It will lower your thyroid levels and Amiodarone also affects thyroid levels.

Did you have any other vitamin levels tested? I'd suggest asking for folate, B12 & D3. You can also get these run privately. Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost.thyroiduk.org/testing/priva...

There is also a new company offering walk in (includes free blood draw) & mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

There's also a different type of thyroid antibody that the NHS doesn't test - Tg, thyroglobulin which can be positive in autoimmune hypo or Hashimoto's disease. You would need to test privately to see that.

Low ferritin/iron levels can affect heart rate and a host of other things. See infographic. Exactly what was your level and what is your GP/consultant doing about it?

low ferritin symptoms

[waveylines]

Hello and welcome. Jaydee right I was put on Amiodarone for a months with distrous results for my Hypothyroidism. I'm in the middle is sorting it out.

I'm confused did you have Hypothyroidism before Amiodarone or have the thyroid problems kicked in since being on it?

Bit of info Amiodarone is really heavy duty drug that can cause all sorts of problems. It's considered the best at regulating heart rate with Atrial Fibulation. But is usually used short term because of its nasty side effects. Were you given an Amiodarone passport?

Amiodarone has a very high iodine content of 37%. A daily dose of 200mg of Amiodarone contain 75mg of Iodine. Most people need no more than 400mcg of Iodine. So you can see this is a lot of Iodine way over the max daily dose is pumped into the body. Iodine binds thyroid hormones, lowers conversion and uptake into the cells of the body. If you have a healthy thyroid the body can adapt but if you don't it can cause problems. People can respond in two ways with becoming Hypothyroid (under active thyroid) or developing the effect of being Hyperthyroid.

Your high heart rate is probably connected to the change in Thyroid hormones. For me as I take a replacement dose of thyroid hormones my body couldn't utilise my thyroid hormones as usual so they back stacked causing me to feel hyper symptoms, fast heart rate, loose stools, shakiness, etc... I've managed mine so far by stopping my thyroid meds for a few days and then reintroduced at a much lower dose than normal.

If you have a noramal functioning thyroid this can't be done so they treat you with drugs to lower thyroid production. . By reducing the capacity of your thyroid to produce them.

Once Amiodarone is stopped its half life is 55 days. The Iodine content halves it's level in four months but takes 8-12months for the excess iodine to fully clear from your body.

Hope this helps. Please feel free to ask questions.

[Torquaygirl in reply to waveylines]

Thank you for this info very useful o

Cardiologist told me it’s very toxic and I can’t stay on it for longer than 3 months. I had to go on it as they tried a large number of drugs over 5 days and it was the only one that worked! I had a terrible asthma attack with the beta blockers and had to have a course of steroids.

They thought I was becoming hyperthyroid, hence why they put me on the carbimazole and had started the Amiodarone.

I seemed to have symptoms before all of this happened , be glad to see endocrinologist for results and advise

[waveylines in reply to Torquaygirl]

Well if you weren't HyPOthyroid before but had symptoms of HyPErthyroidism then it's quite possible. It's a very nasty drug tbh. I lasted a month on it. I was Hypothyroid before treatment. But the blocking of the thyroid hormones from excess iodine means I've only been able to tolerate a very low dose of my thyroid treatment. Not happy. But like you my cardiothoraisic surgeon said he had no choice. At least they've been monitoring your thyroid I had to get that initiated. I just have to wait for the iodine to slowly clear.