Stopped taking Levothyroxine

[dizzydoll3]

Hi all I’m new here and looking for advice please. I’ve taken Levothyroxine 100mcgs for 25 years, when I had my last yearly blood test the Doctor said it was borderline overmedicating me but to carry on with the same dose. I have anxiety about taking medication and had been having terrible palpitations so I stopped taking any Levothyroxine. Now 2 months down the line I’m frightened I’ve done the wrong thing for my health so this morning I’ve restarted taking the Levothyroxine but taken 50mcgs initially and will increase to the 100mcgs if the palpitations don’t return. Has anybody stopped and restarted or completely stopped and been ok? I would be grateful for any thoughts thank you.

[greygoose]

Yes. I've done it a couple of times - although it's not something I would recommend anyone do, but I don't think it did me any harm apart from the weight-gain! Good that you've started on 50 mcg. I would recommend you increase by 25 mcg at a time, rather than jumping up to 100 mcg.

Palpitations are as much a symptom of under-medication as over-medication. And, I'm guessing your doctor is only testing the TSH, and therefore keeping you under-medicated. That's what most doctors do. Do you ever ask for a print-out of your results after a test? The law says you are entitled to one, but your doctor will never just give it to you, you have to ask. And, I strongly suggest you do. You need to know exactly what is tested, and what the results were, and keep your own records.

100 mcg is not a large dose, but there are two possible problems you could have with it: 1) not absorbing it properly 2) not converting it to T3 very well. What you need is complete thyroid testing:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit D

vit B12

folate

ferritin

That will give you a clearer picture of your thyroid status and why you had problems like palpitations.

[dizzydoll3 in reply to greygoose]

Thanks for your reply grey goose I’m hoping I’ve not done myself any damage. I will take your advice and increase slowly. I’ve had blood tests for Vit D, Vit B, Folate and ferritin and am currently taking Vit D and folate acid tablets as they were deficient. The TSH level was 1.7 and the T4 21.6 that’s all that was tested for my thyroid and I don’t know what that means other than Dr saying borderline over medicating.

[greygoose in reply to dizzydoll3]

Oh dear. Your doctor doesn't know much about thyroid, does he. A TSH of 1.7 actually means that you're not quite optimally medicated. However, your FT4 does look high-ish - as far as I can tell without the range (please, always put the ranges). So, that probably means that you aren't converting very well, and that your FT3 is low and causing the palps.

So, you're not going to get better if he reduces your dose - and certainly not if you stop the levo altogether. What you need next is your FT4 and your FT3 tested at the same time to see how well you're converting - but no point in doing that until you've worked back up to 100 mcg and held it there for six weeks. Then, if you find that you are a poor converter, will need to get hold of some T3, somehow. But, it's pretty obvious that your doctor does not have the knowledge to help you, there.

[dizzydoll3 in reply to greygoose]

Thanks so much for your advice I will carry on now and try get back up to 100mcgs then like you say maintain that for 6 weeks then ask for another blood test to see what’s happening.

[Treepie in reply to dizzydoll3]

Without knowing FT3 level you will still be in the dark which is why many use private testing.

[dizzydoll3 in reply to Treepie]

Hi Treepie thanks for your reply, how do you get private testing done please?

[Treepie in reply to dizzydoll3]

You can find details on Thyroid UK web site .Most use Blue Horizon or Medichecks .The latter has deals on Thursdays. You can get a finger prick test ,but some including me find it impossible to get sufficient blood out so I go to a private hospital or clinic used by the testing company and let a nurse take the blood. You then post the pack to the company and await your results.

[dizzydoll3 in reply to Treepie]

Thank you I will have a look online it’s sounds like something I would like to try. I think I best wait until I have been taking my Levothyroxine for a few weeks to get an accurate picture of what’s going on.

[greygoose in reply to dizzydoll3]

You're welcome.

[shaws Administrator]

When I was taking levothyroxine alone I had horrible palpitations and was in and out of the cardiology due to severe palps. The cardiologist was puzzled and was going to put an implant in my heart to 'see what was going on'. I had lots of the usual tests in the previous months.

Just a week or two later I had T3 added to T4, and all symptoms resolved that I never needed an implant in heart.

I assume that I couldn't convert T4 into sufficient T3 but like many on this forum, doctors only look at the blood tests and ignore clinical symptoms (neither do they know any symptoms which are supposed to be relieved when on the right dose).

[jgelliss in reply to shaws]

WOW shaws you are one of the very lucky ones . Imagine how many thyroid and none knowing thyroid patients past/present end up having all sorts of surgeries because of Dr's negligence/lack of knowledge with our thyroids connections . I fault Medical Academia for their lack of teachings with our thyroid issues that can/how affect all our organs and minds .