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Stopping levothyroxine

I am new and endo wants me to stop levothyroxine based on symptoms of sweats, tremor, insomnia, pins and needles, tiredness, weight loss.

Diagnosed 2013 with hypothyroid

Taking 50mcg levothyroxine

Results are

DEC 2017

TSH 5.60 (0.2 - 4.2)

FT4 14.7 (12 - 22)

FT3 3.3 (3.1 - 6.8)

Thyroid peroxidase antibody 558.3 (<34)

Thyroglobulin antibody 1400 (<115)

Thankyou for any advice

67 Replies
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Was it these results that made your Endo tell you to stop taking levothyrxoine?

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Thankyou no it was due to the symptoms. He said they sounded like hyperthyroid so suggested I stop the levothyroxine for a bit

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He sounds like a muppet of the first order!

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Hi Ivia, and welcome to the forum :) I'm still learning but your TSH is over the range which indicates it's having to work hard to stimulate your thyroid, so if anything you'd need an increase in dose of your levothyroxine.

Has the endo run any nutrient tests? As I said, I'm still learning, but I think it's B12 deficiency that could cause some of the symptoms you're having. He should also be checking folate, ferritin, and Vit D. They are all involved with the thyroid.

Have you had any thyroid antibodies checked?

Add any results you have to your original post. YOu'll get some better informed replies soon.

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Thankyou antibody results have been added they are both high, no idea why this would be

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Hashimoto's Autoimmune Thyroiditis.

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Best advice - run away from this endo...... very fast! He doesn't know how to treat Hypothyroidism and I'm guessing he's a diabetes specialist, most of them are and know little to nothing about thyroid.

You are undermedicated as it is to have an over range TSH and such low free Ts. You need an increase in dose, not have it taken away.

Your symptoms are indicative of a couple of things

1) Autoimmune Thyroid Disease aka Hashimoto's - do you have high antibodies?

2) Low nutrient levels - have you had them tested - Vit D, B12, folate, ferritin? Hashimoto's generally cause low nutrient levels.

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Thankyou antibody results have been added they are both high, no idea why this would be

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High antibodies confirm Hashimoto's and this has most likely caused low nutrient levels and your symptoms. I will tag SlowDragon as she has lots of info and links, sorry not well enough to do in depth reply myself, can only manage short ones at the moment.

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The antibodies are attacking your thyroid and killing it. You have autoimmune thyroiditis (Hashimoto’s disease) the antibodies have mistaken your thyroid tissue for something foreign and are attacking it. This will continue until your thyroid is destroyed. You may get sudden dumps of thyroxine as your thyroid dies but these are short lived and the hypothyroidism will prevail. You can get mixed symptoms with hypothyroidism that are normally associated with hyperthyroidism but you are not hyperthyroid as revealed by your blood tests. Gluten free diet and thyroid replacement therapy that is optimised may help reduce the severity of these attacks. They are high because this is the natural progression of the disorder. Your dose is not optimised it is far too low. You need more medication and to suggest you stop taking any is plain stupidity.

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These results would usually lead to an increase in Levothyroxine.

Have you any other blood results to share?

Did you have TPO and Tg tested?

Did you have the following nutrients tested:

Vitamin D, Calcium

B12, Folate

and Ferritin

Are you on any supplements or any other medication?

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Thankyou antibody results have been added they are both high, no idea why this would be

I supplement iron and vit D and vit B12 and folic acid as well but so confused as to how much to supplement

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Have you got your nutrients results to share? With tests dates, all numbers with ranges in brackets and any comments.

Do you take Levothyroxine on it's own with water 30 to 60 minutes before breakfast and supplements hours later with lunch?

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Thankyou I take levothyroxine on its own with water 1 to 2 hours before breakfast and no supplements

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You said above

"I supplement iron and vit D and vit B12 and folic acid as well but so confused as to how much to supplement"

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I stopped them

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Then see GP, get up to date tests and correct treatment . Ask for referal to Haematology.

Ask for a referal to a different Endocrinologist - if there isn't one just keep away from that one.

Ask GP to treat.

Ask GP for an Ultrasound scan of your Thyroid.

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Results taken after supplements stopped will post them

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Ultrasound scan showed thyroid damaged

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That's an unusual report phrase.

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Sorry that was what I was told. It said something like thyroid shows atrophy and is hypoechoic

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Did anyone tell you your diagnosis -

Hashimoto's Autoimmune Thyroiditis & Hypothyroidism?

Same as mine - and many people on here.

No one actually told me - perhaps because they knew I already knew !!

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No one told me my diagnosis of Hashimotos Autoimmune Thyroiditis just told underactive thyroid gland

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When

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2013

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You stopped taking all your supplements in 2013 ?

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I was told of underactive thyroid gland diagnosis 2013, GP told me to stop supplementing Jan 2017

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So what is the date of nutrients results ?

Your thread is getting ridiculously long.

It is very late.

Next time you post please give full information including date of tests up front.

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I do supplement but GP says for me to stop since they are not benefiting me at all

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You're not giving the details for anyone to comment to assist you.

How would GP know that " they are not benefiting you at all " ?? Why would he say that?

Did your GP take recent blood tests to check your nutrients levels?

What are results? Ranges?

What are you actually taking?

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Ferritin 13 (15 - 150)

Folate 2.0 (4.6 - 18.7)

Vitamin D total 25.5 (25 - 50 deficiency)

Vitamin B12 191 (180 - 900)

Told to stop iron 3 times a day, vit D 800iu and folic acid as they were not helping me at all. Do I continue on them. Advice welcome.

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Oh dear!

As already mentioned see GP tomorrow. Ask for immediate attendance at Haematology to :

Get ALL these deficiencies addressed and treatment started immediately.

Or ask GP to test for Pernicious Anemia and treat + iron investigation/ treatment

Your GP should prescribe Loading Dose of Vitamin D of 280,000 IU to 300,000 IU to be taken in split doses over several weeks - depending on which treatment regime is best for you. Then you will remain on daily maintenance dose of at least 800 IU but up to 1000 or 2000 IU depending upon individual need.

I cannot understand why you say - told to stop . . . . as they were not helping me at all ???

Who actually said that?

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The GP said that. Since my levels weren't improving he said I might a well stop them

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Were you taking them every day with food?

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Have you seen GP since these last results?

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Was advised to take iron away from food, when I saw GP about results he said no point doing anything more about them because they just won't improve

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Why won't they improve?

Do you have a medical condition you haven't mentioned?

When did you have your last B12 injection? Did you have iron infusion?

Have you had Full Blood Count and Liver and Kidney blood tests?

What was your Calcium result?

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I don't know of any medical condition I have, last B12 injection given August 2017. No iron infusion given. No liver and kidney tests. MCV was 78.5 (80 - 98) MCHC 377 (310 - 350)

Calcium never been done

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So - why won't you improve??

Why haven't you had B12 injections since August.

See a GP and get everything attended to.

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Don't wait more than one hour before breakfast. Levothyroxine needs stomach acid to work.

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Can you add results for these.

You will be finding it impossible to keep them optimal BECAUSE you are extremely under medicated for Hashimoto's

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50mcg is a starter dose and you are very undermedicated. How long have you been on 50mcgs? Have you been on higher doses before? Also, have you got vitamin levels to post and what about thyroid antibodies?

TSH 5.60 (0.2 - 4.2) TSH is clearly over the top of the laboratory range, showing you are undermedicated.

FT4 14.7 (12 - 22) FT4 is low so you do not have enough T4 for your body to turn into T3 which is the active hormone your cells, heart and brain need. Your FT4 needs to be in the top third of the range.

FT3 3.3 (3.1 - 6.8) FT3 is only just above the bottom of the range. You need to increase FT3 and it's best in the top third of the range so this shows you need a dose increase.

Increase by 25mcgs and retest in 6 weeks adjust again and retest in 6 weeks and so on until TSH is around 1 or a little lower which is where most people feel well. You also need to optimise vitaminn levels for thyroid hormone to work effectively.

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Thyroid peroxidase antibody 558.3 (<34)

Thyroglobulin antibody 1400 (<115)

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As above advice from others on the forum, you have Hashimotos thyroiditis. To read more about Hashimotos see Thyroid UK’s website information on Hashimotos

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

Members of the same family may carry genes that predispose toward thyroid disease but genes need to be switched on. Something switches them on so one member may develop disease but another may not. I don't know much about it to be honest, this is just what I've read.

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Thyroid Antibodies results have been posted about 4 times - but you still haven't given dates of nutrients tests? ??

Always give dates of tests and full information.

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But there is meant to be a genetic link for autoimmune disease and no one else in my family has Hashimotos I don't know how this could happen

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It has to start somewhere.

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It has to end somewhere too. I give up.

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You have been given a lot of information, which can be overwhelming especially as -

You must be very unwell to have these Thyroid results.

Whenever the nutrients were tested (you won't say??) you would have been OR are , presently, extremely unwell.

1)

You need immediate increase in Levothyroxine. Then another Thyroid test in 6 weeks.

Take your Levothyroxine 30 to 60 minutes before food.

2)

You need to see Haematology or get a GP or other Specialist to treat you quickly for your

LOW:

Ferritin (BELOW range)

MCV (BELOW range)

Folate (BELOW range)

B12 (Injection overdue?)

Vitamin D (DEFICIENT - Loading dose needed)

AND your HIGH:

MCHC (ABOVE range).

Ivia, the reason that your supplements weren't working / improving your condition is because you were not on enough!

For example: 800 IU Vitamin D, every day, won't help to bring your levels up into a healthy state. This is why you need higher doses to begin with.

Let's know how you get on at the doctor's. You may need to make a number of appointments to get everything sorted.

Take someone with you if possible. Make a list of all your results. Also a list of your symptoms.

After you've been given your B12 injection you should be started back on 5mg Folic Acid. Take your supplements with lunch. Seek advice about iron - if given tablets - take with fresh orange juice.

Hope you start to get somewhere today.

xx🐥

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You have tested positive for Hashimoto's. Endo or GP should have told you. However the treatment is for your Hypothyroidism.

You need to get this corrected and get nutrients doses correct also.

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No one in my family has gad thyroid problems never mind Hashimotos but I have.It just is ,pointless looking for a reason.

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All sorts of reasons.

Hashimoto's probably starts with gut. There is dramatic increase in autoimmune disease generally.

Over 2.2million people in UK are on Levothyroxine.

There may be many many triggers

Antibiotics wipe out good bacteria in gut as well as bad.

Smoking or especially stopping smoking can be a trigger

Pregnancy, menopause, being female all increase likelyhood

Modern wheat has much higher gluten content

Increased environmental toxins and enodcrine disrupters

Etc etc etc

Loads of us develop Hashimoto's "out of the blue"

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The way I understand it is that it doesn’t need to be the same autoimmune disease. My mother had greaves my father urticaria I have hashies + 2 others . It’s confusing I know.

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As far as is known it is not always caused by genetics, environmental factors also play a part even identical twins might not both get it (50-55% for Hashimoto’s). It is a complex matter that even scientists have yet to unravel. It is very prevalent in my family on the maternal side but we don’t have exactly the same thyroid conditions and one sister is hyperthyroid not hypothyroid. I would not worry about why you got it but rather how you will get yourself as well as possible again. We are lucky that there are treatments available 200 years ago it was a different matter. Our big problem seems to be getting our medical profession to treat us correctly.

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According to your blood results you are under medicated as TSH over range. It is ironic that medics who are normally fixated on numbers are choosing to disregard these ones. I cannot categorically say your symptoms aren’t due to levothyroxine but it seems unlikely. Have they investigated for any other reasons? Have you had a change in brand ? Or changed routine in how you take levothyroxine? I would be very reluctant to stop medication with those blood tests. Is it possible to ask for a second opinion cos frankly I wouldn’t trust this medic.

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Thankyou no change in brand and haven't changed any routine in how I take it

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You are under medicated and almost certainly have low vitamin D, folate, ferritin and B12

Add the results and ranges on these if you have them. If not make an appointment to get them tested ASAP

You need 25mcg dose increase in Levo and then bloods retested in 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

This increase by 25mcg should repeat until a TSH is around one and FT4 towards top of range and FT3 at least half way in range

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
tukadmin@thyroiduk.org

Your 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

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges.

Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Prof Toft - article just published now saying T3 is likely essential for many

rcpe.ac.uk/sites/default/fi...

But with Hashimoto's we need to get vitamin levels correct first. Increase Levo enough to lower TSH down to around one and FT4 towards top of range

Plus many find gluten free diet helps or essential

If after these steps are done FT3 remains low then you may, like many with Hashimoto's need addition of small dose of T3

Read as much as possible about Hashimoto's

Medics currently have little idea how to correctly treat

Join Improve Thyroid Trestment campaign too, currently only on Facebook.

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Thankyou GP reluctant to increase but can go back and ask

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See different GP if current one won't

You are clearly under medicated

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The symptoms you describe could be attributed to a range of problems.

For example, sweats and tremor can be due to insuffficient thyroid hormone. With insufficient thyroid hormone the body may pump out cortisol to compensate and when cortisol runs out then adrenalin. Both of these can give you sweats and tremor. The other possible explanation is that autoimmune activity temporarily raised your thyroid hormone level and caused the symptoms but by the time you tested thyroid blood results it had settled down and you were hypothyroid again (depends on timings).

Pins and needles can be due to low iron levels and/or low B12, folate.

Tiredness is very likely due to being hypothyroid.

Weight loss could be due to other factors, ask your doctor to rule out aborption problems such as coeliac disease or pernicious anaemia by doing blood tests. Coeliac disease tests are not very reliable so read SlowDragons advice and try going gluten free to see if it helps.

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Thankyou I do supplement and GP said none were of any benefit to me so told me to stop them

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It's rare to find a doctor that knows the first thing about nutrients. They don't 'do' it in med school. Just ignore him.

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Sadly, it seems that a lot of doctors and endocrinologists do not look in to anything in any depth. Most of us have to take responsibility for our own health, find out as much as we can about our condition, pay privately for some tests if we can't get them on the NHS, and give up on the notion that our medics will help us really get better. You do get some good GPs so it may be worth trying a different one, but even so, learn all you can and start driving it yourself. Best of Luck to you. And I really am off to bed now! :)

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This doctor and your endocrinologist are making your suffering far greater than it needs to be. They spout clap trap

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thyroidpharmacist.com/artic...

I'm off for some sleep, but here's a link to some information about hashimoto's. You can also use the search facility on this forum to search for posts and replies about hashimoto's.

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Do you take any other medications?

Do you drink alcohol regularly?

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Tell your doctor to make sure that you are being treated adequately! Symptoms of Hypo and Hyper are often the same. You need to be within the range and even more importantly, on a dose that suits you personally. Good luck!

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