How to Stop Medication

[KazNan5]

Hello, I am desparately wanting to come off my thyroid medication, been on it too long, in my view, but no dr will help me. I am very keen to try to heal my thyroid condition (if I actually have one) with a good diet or change of diet. I believe it is possible, but the medical profession seem to want to keep me on it. The only initial 'sympton' I had as that I could not lose weight, which probably could have been addressed with diet and exercise, no other symptons. I have been on Levothyroxine for over 20 years and still I cannot lose weight. So I question a) do I actually have a thyroid issue? and b) the meds are not working on this front. Anyone else trying to get off their thyroid meds and having more success?

[Alanna012]

Welcome to the forum!🤗

You seem to not be sure that your treatment for hypothyroidism is justified. Do you know if you have thyroid antibodies?

Doctors tend to test TSH (thyroid stimulating hormone) yearly or every two years or so. It's unlikely you'd be getting levothyroxine for this length of time if you didn't have a medical need (I mean misdiagnosis happens, but fairly infrequently with hashimotos, it tends to rather be the case that people have the condition and hormone levels still don't reach the magic threshold to be deemed worthy of treatment even though there may be ongoing symptoms)

How much levothyroxine are you prescribed and how long have you been on your current dose?

Do you know what your TSH, FreeT4 and FreeT3 levels are?

When were you last tested?

You can feel truly awful when undertreated. And there are some people who just find it very difficult to get by with mono therapy.

[KazNan5 in reply to Alanna012]

Hello, thank you for your reply. I have yearly blood tests for those levels, and I am due a blood test this coming July. I have some results somewhere, so I would need to look up the levels. I am on 100mgs of Levothyroxine. Initially when I went to see a GP cos of lack of weight loss, she actually told me to go down the route of diet and exercise, but I insisted on a blood test to check levels. In hindsight I may be should have taken her advice to see if I it was just diet related and nothing to do with TSH levels. The lack of weight loss was the only supposed sympton, I have no other symptons at all, this is why I question it, even after all this time. I will look for my previous blood test results and see what they say.

[Alanna012 in reply to KazNan5]

It is worth looking at your current test results as you say.

TSH in the UK usually has to be at 5 (which is already too high) but in many cases (including mine) doctors will not prescribe until TSH is over 10 which is disgraceful. Even at 10 unless symptoms are obvious, you will sometimes have to bang a tambourine and do the hula in the GP surgery or hospital before you will get a prescription for levothyroxine. That's why it's unlikely your GP would have put you on Levo unnecessarily.

Even if she had, subsequent reviews by different doctors should have meant the wrong diagnosis was picked up. Though I'm not saying it's impossible.

Were you started on 100mcg or was your dose increased over time to this level?

Have you ever tried reducing the dose or lapsed for several weeks at any point? If so, what happened when you did?

[KazNan5 in reply to Alanna012]

Hello, I was started on quite a low dose if I can remember correctly, it only went up to 100mgs about 3 or so years ago, I cannot recall the actual time it increased, but it certainly has increased over the years. I have not tried to reduce the dosage, I was hoping to have the support from GP, but sadly it is lacking. I am not sure whether to just try it and see, but at the same time, look into what foods contain the nutrients I am missing to make the TSH level correct.

[Alanna012 in reply to KazNan5]

Was it increased in response to you still not feeling great on the medication or after testing?

If it was after testing that is strongly indicative of you having had an elevated TSH and it being gradually reduced over time with an increase in medication.

This may seem like I don't understand your wish to be off the medication - believe me when I say I do SOOO completely understand - but I am tackling the issue of your uncertainty about about having the condition in the first place.

The fine tuning (and frankly the expense to the NHS as it's a widespread illness) of treatment and the reluctance of GPs to prescribe unless deemed very necessary means it's unlikely you didn't have at least a thyroid related illness at the time you initially went to the GP.

I'll explain about the issues around coming off medication later

[KazNan5 in reply to Alanna012]

It was increased following a blood test, so assume it was to do with the levels. It was not as a result of me feeling different or out of sorts on the medication. Really appreciate this help and advice.

[ThyroidObsessed]

hypothyroidism/hashimotos cannot be cured with diet or supplements I’m afraid 🥲

But you can help your weight and symptoms through a good diet, plenty of fibre and supplements!

I rarely suffer with symptoms and I slim due to making these big changes! ☺️

[KazNan5 in reply to ThyroidObsessed]

Thank you, but I am questioning if I even have a thyroid condition, or was I just being very self critical, not looking after myself and trying to find a 'blame' for my not being able to lose weight or feeling that I was not looking how I wanted to? Thanks for the reply though.

[Sat2 in reply to KazNan5]

It would seem highly likely that you do have a thyroid issue based upon the fact that your levothyroxine dose has been increased over the years, this would be based upon the results of your blood tests which have indicated the need to increase the levothyroxine. If you don’t have a thyroid issue, your bloods tests wouldn’t indicate a need to increase the dose.

I suffered subacute thyroiditis from which a high percentage of people normally fully recover, I didn’t and went on levothyroxine, eventually I decided I wanted to see if my thyroid had recovered and I didn’t need the levothyroxine. I tapered off levothyroxine with the support of my GP, I ended up very unwell taking around 6 months to recover after restarting the levothyroxine. Be careful if you decide stop the levothyroxine to find out, reduce the meds slowly and have frequent blood tests, be prepared to go back on the levothyroxine if needed.

[Sparklingsunshine in reply to KazNan5]

I'm guessing your thyroid condition was severe enough to need Levo, its actually very hard to get on thyroid treatment in the UK as it normally requires two over range thyroid tests 3 months apart.

And some people are still being made to wait until their TSH gets to 10. Did your GP test you like that back in the day? Did you ever have raised antibodies denoting autoimmune thyroid disease? It can make a difference as to whether to quit your meds if your own thyroid isnt too damaged and is capable of producing hormones.

[KazNan5 in reply to Sparklingsunshine]

Hello, sorry for the late response. I don't think my GP did tests 3 months apart, as far as I can recall it was just one blood test and hey presto I am on Levo meds. I do not know about the raised antibodies either. I just wish GP would at least listen to me and do more thorough tests and checks to be sure, rather than just fob me off and say I hav to just keep taking them. Thanks for reaching out to me.

[FancyPants54]

You have been on medication for a long time. It's most unlikely that it was a mistake or that it was you pushing for it that got it prescribed. Many of us with a huge amount of knowledge about our condition and the treatment and monitoring of it are regularly completely ignored if we try to suggest something the GP disagrees with.

After this amount of time your thyroid is likely shrunk and therefore won't "wake up" in the way you think it might. You risk your health and sanity by trying to come off it. A few people try, with the ideology that a good diet and supplements will fix everything and then they make themselves very ill indeed and it can take 1-2 years to recover from that.

It would be a good idea to buy a full thyroid blood test, including FT3, FT4, TSH and antibodies from Medichecks or other test providers (see Thyroid UK web site for test information and links) and do your own full test to see where you are. Then share the results here for advice. Chances are that you are still not optimally dosed as GPs are woefully cautious with thyroid conditions and would rather just get us into range and leave us there than try to optimise our treatment.

I'd do the full thyroid panel (take the test first thing, before 9am and nothing to eat or drink other than water from dinner time the night before. Leave 24hrs between the last dose of your medication and the test and if you take any vitamins that contain Biotin (B vitamins are often the culprits) stop them for 4-5 days before the test because Biotin can interfere with test results.

[FancyPants54]

Oh, and I should have said, thyroid medication is for life normally. It's not something you take for a while and then stop. So you have not been on it too long. Best to find out a proper set of results. Then we can help you to understand where you are and what you might be able to do about it.

[KazNan5]

Thank you .

[DippyDame]

A full thyroid test will clarify this...

TSH, FT4, FT3, vit D, vit B12, folate and ferritin and if not already tested thyroid antibodies TPO and Tg

I suspect ....

...you are wrongly medicated

...your T4 to T3 conversion is impaired

...your FT3 is too low

...one, or more, of the key nutrients which support thyroid function is deficient......Vit D, vit B12, folate or ferritin

...you GP is TSH focussed and that alone is not a reliable marker!

Stopping medication after 20 years would be very unwise as the others have explained.

Your diagnostic / first test must have indicated hypothyroidism otherwise you would not have been prescribed replacement thyroid hormone

Your concern may indeed be due to low hormone, but most likely low T3 which medics are reluctant to use.....long story.

Thyroid weight gain is unlike that caused by poor diet and is unlikely to reduce by careful eating diet.

Best option is an FTT many of us test privately using one of these companies....Medichecks do FTTs and offer a discount

thyroiduk.org/testing/priva...

Don't blame yourself....after 20 years it's almost certainly a thyroid condition but there is no point in turning this into a guessing game because without the full facts/ labs we won't find the answer.

A good diet will not heal a failed thyroid!

Come back with whatever current test results you can manage and ask your surgery for copies of historic test results too....you are legally entitled to request test results

With the correct information I'm sure we can allay your concerns

[KazNan5 in reply to DippyDame]

Hello, so sorry for the delay in responding, its all just very depressing. I really appreciate your help. I think I had a ferritin level check and that was ok. I am due a blood test for thyroid in July, so I may wait and see what that looks like. I just wish to get away from big pharma meds and wish to pursue more natural healing. Thanks again. Best wishes.

[DippyDame in reply to KazNan5]

Worth bearing in mind that levothyroxine and liothyronine are replacement thyroid hormones and as such are bioidentical.... they are not 'drugs' per se.

I know how difficult it is....it took nearly 50 ( yes!) years to identify my rare thyroid condition by which time some irreversible damage had developed. It was members here who helped....not medics!

Correct treatment is vital

If thyroid hormones are low they must be replaced...it's the only treatment

Post your new labs for advice

Take care

[KazNan5 in reply to DippyDame]

Thank you very much x

[helvella Administrator Thyroid UK in reply to KazNan5]

Unfortunately, we have seen people with ferritin as low as 12 being told that is OK.

(NICE now say that 30 is a clear sign of iron deficiency.)

And ferritin rises with inflammation. So it can appear fine despite iron deficiency.

Somewhere around 70 to 100 with no inflammation present to raise it would seem OK for most of us.

[Buddy195 Administrator]

As other members have said so well, please share actual results with us. It is highly likely you are not optimally medicated. Please do not stop your thyroid medication, as this will likely make you extremely ill in the long term.

We are here to help and support you, but we do need sight of your results (with ranges) for thyroid tests and any key thyroid vitamins (folate, ferritin, B12 and vit D).

[SlowDragon Administrator]

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

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

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.

Levothyroxine is NOT a medication, it’s replacement thyroid hormones because your own thyroid not longer works

100mcg is not a high dose

Your dose may need increasing after next blood test

Approximately how much do you weigh in kilo?