just tiny increase but heart all over the place

[MyOrangeDog]

My GP wants me to increase from 50 to 75 of levothyroxine. It’s taken me so long to get up to 50 mg because I’m so sensitive insofar my heart starts racing and missing beats .

I first tried taking 25ng a day in 2020.

In the end I had to take it once every three days because my heart would race and it took about a year to build up to one a day.

To accommodate my new increase I’ve been taking 37.5mg in two split doses am and pm. But the same has started happening ,as expected ,after just a few weeks.

I dropped down to one dose of 25 and another of 37.5 but within 10 minutes of that higher dose it all kicks off again and it’s quite frightening. I’m beginning to feel very anxious and panicky. I hate it.

I’m on two different brands, the 50s are Mercury Pharma and the 25s are Wockhardt. It’s so difficult getting consistent brands.

I tried getting an e-consult with the GP yesterday but they had closed it as their intake was full. Now the Easter break is here so I’m going to drop back to my previous 2 x 25mg a day as I can’t function like this.

I was up until 3 am last night not knowing what to do with myself. Any advice from anyone here would be most welcome. Especially if there’s anything I can suggest to the GP as they don’t seem particularly informed on thyroid issues.

thanking you. J

[SlowDragon Administrator]

Try initially only increasing once a week

After 6 weeks, increase twice week…..etc etc

Meanwhile get vitamins tested and optimal

Have you tested both thyroid antibodies?

Your results (in previous post) show you are very under medicated

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

[MyOrangeDog in reply to SlowDragon]

Hi slowdragon, thank you for your advice. I didn’t think about increasing that slowly. So just to confirm , I take the increase just one day each week, then twice a week after six weeks and so on?

I know I had antibodies back in 2020. I had my vitamins done a few weeks back. My b12 was at the higher end of range ( I take a spray supplement) and all the others were in range. I will look at the list you’ve sent me a link too. Thank you 🙏

[SlowDragon Administrator in reply to MyOrangeDog]

You could cut 25mcg in half and add 12.5mcg two days a week

Or try cutting 25mcg into 1/4 and add 1/4 tablet every day

Were BOTH TPO and TG thyroid antibodies tested

Please add actual folate, ferritin and vitamin D results

[MyOrangeDog in reply to SlowDragon]

Not sure which antibodies they were..it was done in 2020 and I had no real idea of the significance at the time. What is the difference between TPO and TG antibodies? I’m going to try and track down the folate, ferritin and vit D results.

[SlowDragon Administrator in reply to MyOrangeDog]

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS won’t test TG antibodies unless TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Gluten intolerance is often a hidden issue too.

Request coeliac blood test BEFORE considering trial on strictly gluten free diet

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease and when on inadequate dose levothyroxine

[MyOrangeDog in reply to SlowDragon]

Thank you for this information. Makes sense. I’m just amazed GPs dish out tablets and are reluctant to explain anything. They seem to be even less interested in my issues taking it. My last conversation when asking for advice on how to increase my dosage (taking into consideration my extreme sensitivity to levo) was ‘well, you know your own body.. do what you think is best!’??

The past few days have really frightened me. I am a podiatrist and my patients want to know about their condition and expect an in depth explanation from me which I’m happy to give. Shame this attitude isn’t extended to me from my GP.

This forum is an absolute Godsend. .

[SlowDragon Administrator in reply to MyOrangeDog]

Hypothyroidism is not a rare disease. There’s just over 2 million people in U.K. on levothyroxine. About 90% are female.

Percentage of population on levothyroxine

forthwithlife.co.uk/blog/th...

nice.org.uk/guidance/ng145/...

Hypothyroidism is found in about 2% of the UK population and in more than 5% of those over 60. Women are 5 to 10 times more likely to be affected than men.

It is, a very complex disease and rarely understood or well managed by GP. Apparently in GP training the whole endocrine system covered in couple of days …and thyroid…..training is …diagnose….dole out little white pills (levothyroxine) and get bloods roughly in range - hey presto…fixed

For many, many thyroid patients that’s just totally inadequate

You might find my profile info helpful

Request referral or self refer privately to a thyroid specialist endocrinologist

Roughly where in U.K. are you

[MyOrangeDog in reply to SlowDragon]

Hi Slow dragon, sorry to bother you again..I’m trying to access the link but I keep getting Google Captcha failed message so won’t send my request form for the list of doctors.... don’t suppose you have any idea why?

[SlowDragon Administrator in reply to MyOrangeDog]

I just tried it ….. it’s working ok

[MyOrangeDog in reply to SlowDragon]

ok.. I will try again. Thank you.