Stopped Levothyroxine, and the doctor said to d... - Thyroid UK

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Stopped Levothyroxine, and the doctor said to do it!

Msharpe1963 profile image
16 Replies

Im new here. I have been on Levothyroxine 25 mg for 15 years, my doctor put me on this within a month of me starting the menopause which can affect the thyroid i've always thought i did'nt have a thyroid problem and have always insisted that it was in fact my hormones changing due to early menopause, anyways, i took these little pills i was given (because we trust our doctors right?!).

So a long story cut short.... my doctor decided i needed to up my med's to 50 mg because apparently i was running low, after about a month of this, i developed the most scary palpitations which made me quite anxious as i was frightened and wondering what this was all about.( I did about 2 years ago get told to take 75 mg on the doctors say so, but that time i got muscle spasms and electric feelings in the top of my head, so stopped on my own accord, and went right back to 25 mg to feel normal again) anyways, after a month of this, i cut them back down to 25 mg but still am suffering palpitations, so last week on the 12 November, i called my doctor and told her what i was feeling, and she told me to just stop taking them, so i did. i am still a week later suffering some palpitations although not quite as bad, so today i went back to the doctor and told her about how i'm feeling, and she said to stay off them for another four weeks, and then go back on the 10th December for bloods to see if my levels have dropped, she also said she will get me a monitor to wear for 24 hrs to find out about the palpitations, so i'm just waiting for this now. I do know one thing though.... I feel so much better now i'm off them. Has anyone felt that there hormones could be the cause of their thyroid problem? because they are in fact, as far as i know linked.

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16 Replies

The electric feelings - did they by any chance coincide with a change in depression/anxiety meds?

Msharpe1963 profile image
Msharpe1963 in reply to

Hi, no, i wasn't taking any other medication, they just upped my dose and i was being over medicated 😊

in reply to Msharpe1963

ah okay. :)

Hennerton profile image
Hennerton in reply to Msharpe1963

Unless you have blood tests showing you are overmedicated, do not assume that is the cause of your palpitations, as these occur also in undermedicated people. Make sure your GP does a full blood test as in free T4, free T3 and not just TSH. Then post these results here in a new post. Depending upon results you may wish to ask for further tests such as vitamins/minerals and antibodies but I doubt she will do those at thIs stage. Maybe worth a try? You need iron, ferritin, Vit D, B12 and folate. Low levels of any of these can cause various symptoms like palpitations, particularly low iron.

Msharpe1963 profile image
Msharpe1963 in reply to Hennerton

Hi, my doctor stopped my meds due to me complaining about the symptoms i was suffering getting worse, and yesterday i actually got to see a doctor who told me to stay off the Levothyroxine for another 4 weeks and then get bloods taken to see if im over or under, she said she will order other tests for hormones, pottasium iron, ferritin, Vit D, B12 and folate, but first realising in june the brand of my meds had changed to Teva and this was when the symptoms started and just gradually got worse and led up until now. I went to my chemist today and he said the brand had actually changed in June and he has put on my records that i cant take Teva due to bad reactions. ( Have you read about it? Its horrendous) So i will be going back to my doctor to get earlier blood tests as i am still having palpitations which i think are due to being hypo, for 15 years i was on just 25mg and that brand was Actavis, and i can honestly say i never had any problems whilst on that. Only time will tell i guess.

Marz profile image
Marz

From reading here it seems thyroid hormones work better when your levels of B12 - Folate - Ferritin - VitD are all optimal. B12 over 500 - Ferritin and Folate mid-range & VitD around 100.

Low Iron can also be the cause of palpitations - so often missed by Docs.

loueldhen profile image
loueldhen

No. But I know I felt better when I stopped taking t4!

SlowDragon profile image
SlowDragonAdministrator

25mcg was only half the recommended starter dose, if you had been left on that for years, it's not surprising you reacted badly to finally getting an increase. Under medication can badly affect us, meaning it's very difficult to increase dose.

Menopause often changes ability to use thyroid hormones too due to low vitamin levels

After 6-8 weeks with no Levothyroxine you need full Thyroid evaluation, that's TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

absolutely essential to test vitamins and thyroid antibodies

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or vitamins

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

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

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

List of hypothyroid symptoms

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

Palpitations are often due to being under medicated or low vitamins

Msharpe1963 profile image
Msharpe1963 in reply to SlowDragon

Thank you so much for the information you have provided. My doctor has never told me what my levels are, i have only ever been told to keep taking the Levothyroxine, which was fine for all those years. I did however find out lately, that in June (When the palpitations and symptoms started) i was changed from Actavis to Tiva, and reading about Tiva online, about other peoples symptoms when switched is horrendous. Have you looked this up by any chance?. I went to my chemist today and he told me that if i get put back onto Levothyroxine after my next bloods, i wont be given the Tiva brand again, as i seem to have taken quite a bad reaction to it, so he has changed this on my prescription so that it never happens again.

FancyPants54 profile image
FancyPants54 in reply to Msharpe1963

Teva brand is notorious. Not just from June this year either. Loads of people on here won't touch it. Me included. Don't be afraid of taking a higher dose of Activis when the time comes.

Msharpe1963 profile image
Msharpe1963 in reply to FancyPants54

I know it is, i did read a lot online about it and none of it is good. I certainly wont be touching it again. While still on Activis my doctor did try me on 50mcg but four weeks later took my blood and found me to be hyperactive, so this is the reason i was on 25mcg for 15 years, and i felt great on it. I know it is a very small dose though, and this is why i have constantly questioned my results with my doctor, but trying to get them to check other things like vitamins etc, is like pulling teeth from a chicken. Thank you for chatting, it helps.

SlowDragon profile image
SlowDragonAdministrator in reply to Msharpe1963

Hundreds of post about Teva

Most hate it, some get extremely ill on it

but a very few love it, usually because they are lactose intolerant

Get back on activis and get full thyroid and vitamin testing via GP or privately after 6-8 weeks on constant dose

You could ask GP to test vitamins NOW

Improving vitamins will enable thyroid hormones work better

SeasideSusie profile image
SeasideSusieRemembering

When your dose was increased - was the brand of Levo changed?

Msharpe1963 profile image
Msharpe1963 in reply to SeasideSusie

Hi SeasideSusie, Yes it was changed to Tiva, i noticed back in June that the packaging was different but didnt think anything of it, thinking it was still Levothyroxine, until by September when the palpitations and symptoms got so much worse and i felt ill. I have been to my chemist today though and discussed it with him, and he did in fact say that the brand changed on June this year. So told me if i get put back onto Thyroxine again after my next bloods, i will not get the Tiva brand and go back to Actavis, which i never had any problem with for 15 years. He has put this on my records thank goodness.

SeasideSusie profile image
SeasideSusieRemembering in reply to Msharpe1963

Many members have had serious side effects from Teva, although some do well on it.

By going back to your original brand, hopefully things will settle down again.

FancyPants54 profile image
FancyPants54 in reply to SeasideSusie

She was changed to the dreaded Teva.

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