Is it normal for your heart to race and other symptoms after carbimazole has reduced your t4 levels?

[L3008]

Is it normal to still have racing heart after thyroid levels have reduced? I was misdiagnosed for months, have been taking carbimazole for 6 weeks and its brought my levels down to normal, still waiting on a blood test regarding graves disease..but i still feel dizzy and unsteady and racing heart (not as bad as before, but still very uncomfortable)

[Lora7again]

Do you have these normal results to share with us? I am only asking because my Endocrinologist overdosed me on PTU and my TSH was 9 so I felt very unwell. You can read my story on my profile page if you are interested.

[L3008 in reply to Lora7again]

Hi, unfortunately, due to the circumstances right, all my appointments have been over the phone! I know my t4 levels started at 40.6, after 2 weeks I had another blood test , that's the only letter I have, my tsh is below 0.1, high ft4 28.5 and ft3 was normal at 4.5. These numbers mean nothing to me as not a lot is explained over the phone other than perseverance with medication. I'm on 20mg carbimazole. I had another blood test 2 weeks ago, and all I was told was that my tsh is still below 0.1 but my t4 levels were 17. Something!? My heart racing is literally making me vomit, and this constant feeling over being drunk! All my neck and shoulders are aching, and i have to remind my self to not clench my jaw ( I seem to be doing it in my sleep also!) I have to have another blood test in a month and thyroid antibodies test? I've never felt so poorly! Being in lockdown doesnt help and taking care of children constantly. I had my white blood cells and b12 checked at my last bloods, both were normal.

[Lora7again in reply to L3008]

You might need to reduce your carbimazole ... can you talk to your doctor and ask them about it? Your T4 at 17 is not that high so your T3 might be lower, the TSH always lags behind and is slow to rise. At the moment my TSH is 0.38 and my T4 is 22 but I feel well. I am not on any drugs at the moment btw. We are all different and some of us do feel well with their T4 at the top of the range. I also have a multi-nodular goitre so this affects my levels.

[L3008 in reply to Lora7again]

I was feeling quite well last week, it's just this weekend, my heart racing seems to of come back with vengeance. And all of a sudden I feel unsteady and dizzy. The propananol I struggle to take as it drops my blood pressure too much and can make me dizzy. I dont know anyone with this and I really dont know a lot about it at all. Is it normal to have good days and bad days? I spoke with the gp yesterday who said to persevere until my next bloods in a month. With this pandemic going off, this is all being managed over the phone with the gp's, not endo

[Lora7again in reply to L3008]

I decided against propranolol even though my GP tried to get me to take it. I know propranolol can make your heart rate drop and my husband actually ended up in hospital after his GP gave it to him without first checking that he had a low heart rate anyway because he was a long distance runner for many years. Carbimazole did not agree with me and brought me out in a rash so I took PTU which is an older trusted drug. I must admit I did reduce the PTU myself because I started to feel very tired and unwell. I am glad I did because when I eventually saw my Endocrinologist my TSH was 9 and felt very weak and ill. I would not advise you to do that unless you can get a blood test asap. Doctors can advise you what to do but you don't always have to take their advice if it is making you feel unwell. I had a thyroid storm last year and was admitted to hospital but because my TSH was within range they did not test anything else so I now do my own private blood tests. I am afraid I have lost confidence in any doctor treating my thyroid disease and look after my own thyroid health now. I have had a horrible time of it over the last 12 years with first getting diagnosed and then given the correct treatment. I am sadly not the only one and this is why this site and others like it exist. If I was you I would join Elaine Moore's site in the US she helped me get diagnosed when my GP told me I had the menopause.

Here is a link to her site.

elaine-moore.com/

[L3008 in reply to Lora7again]

Thank you so much for your help x

[Lora7again in reply to L3008]

You're welcome x

[SlowDragon Administrator in reply to L3008]

TSH will frequently remain suppressed even when Ft4 and Ft3 are dropping too low

FT3 looks like it’s already too low...but you need to add the ranges (if you have them. These are the figures in brackets after each result

Ft4 at 17 looks like it’s dropping low too. Again need range on that result

[L3008 in reply to SlowDragon]

I have never been given a range, I will have to make sure I ask next time!

[SlowDragon Administrator in reply to L3008]

Ranges vary considerably from lab to lab, so a result without ranges is difficult to assess

Typically (but by no means always) ranges on Ft4 is 12-22 and Ft3 3.1-6.8

If this were the ranges on your tests ...

Ft4 would only be 50% through range

Ft3 only 38% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

TSH can take weeks or months to respond....so the most important results are always Ft3 followed by Ft4

[L3008 in reply to Lora7again]

*right now

[SlowDragon Administrator]

Have you had Graves’ disease confirmed by testing TSI or Trab antibodies?

thyroiduk.org.uk/tuk/about_...

Important to also test both TPO and TG thyroid antibodies tested for Hashimoto’s

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

Also extremely important to test vitamin D, folate, B12 and ferritin

Low B12 can cause dizziness and feeling like walking on a boat

Contact GP and request further testing

Low vitamin levels are extremely common, especially if you have Graves’ disease and/or autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

It’s possible to have BOTH Hashimoto’s and Graves’ disease at same time

Ask GP to test vitamin levels and ask that thyroid antibodies are tested if not been done

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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 .

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Medichecks also offer testing of Trab Antibodies for Graves’ disease

medichecks.com/products/tsh...

[L3008 in reply to SlowDragon]

They are testing for graves disease in a months time. They tested white blood cells and b12 at my last bloods, both were normal.

[SlowDragon Administrator in reply to L3008]

Do you have the actual results and ranges?

[L3008 in reply to SlowDragon]

I dont have them for b12 or blood, I was just advised over the phone they were normal. I know my t4 levels started at 40.6, after 2 weeks I had another blood test , that's the only letter I have, my tsh is below 0.1, high ft4 28.5 and ft3 was normal at 4.5. These numbers mean nothing to me as not a lot is explained over the phone other than perseverance with medication. I'm on 20mg carbimazole. I had another blood test 2 weeks ago, and all I was told was that my tsh is still below 0.1 but my t4 levels were 17. Something!?

[SlowDragon Administrator in reply to L3008]

Read as much as possible and learn about Graves’ disease...also consider Hashimoto’s

Hashimoto’s....is autoimmune too and frequently starts with transient hyperthyroid results and symptoms. It’s often assumed by GP that high Ft4 and low TSH is Graves’ disease. It can be Hashimoto’s Hence importance of testing all antibodies

Strongly recommend always getting actual results and ranges of all tests

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto’s and TSI or Trab antibodies for Graves’ disease . Also EXTREMELY important to test vitamin D, folate, ferritin and B12 for both

[L3008 in reply to SlowDragon]

I've rang the surgery again, I'm going to ask for all this to be done. Thank you so much for your help. Honestly feel so alone with all this and it's quite scary.

[Hkm2281]

I also take 20mg of carbimazole due to graves. I was talking 40mg but it had to be reduced due to hives. I have been on carbimazole for 6 weeks but I still require 160mg propanalol otherwise I get the symptoms like you are describing I know it feels so rubbish. Hope you're better soon x

[L3008 in reply to Hkm2281]

Do you get a feeling of being unsteady, like you're going to fall, like you're drunk too? It's a very scary symptom. It gets worse with the lights in shops ect. The gp doesnt seem to understand when I'm trying to explain it, they were treating me for vertigo, bppv and menieres for months before checking my thyroid

[Lora7again in reply to L3008]

Have you checked your heart rate and blood pressure? Since I was diagnosed I have my own blood pressure machine and if I get palpitations which I still get if I am stressed so I check it. At the moment I think we are all under a lot of stress and I recently had a spell of high blood pressure because of the situation I am dealing with. I am having to shop for my family and my Dad who is self isolating which can feel very stressful.

[L3008 in reply to Lora7again]

Yes, I'm stressed too, hard not to be right now. Husband is a key worker and im home with my 3 kids and 2 step kids constantly, my youngest has special needs, so like most of the country, feeling the pressure! Feeling unwell doesnt help x

[L3008 in reply to Lora7again]

I have a heart monitor on my watch, but nothing for blood pressure x

[SlowDragon Administrator in reply to L3008]

What’s your diet like?

Average, good, whole food, vegetarian or vegan?

[L3008 in reply to SlowDragon]

I'd say it was good. Largely meat and veg, I've had to cut out anything processed, ANYTHING with the slightest bit of salt makes my symptoms far worse. Even if a pinch has been put in to boil potatoes! Cant eat much either, so have been sticking to chicken x

[L3008 in reply to L3008]

Meat