Change of smell/taste and feeling unwell on Levothyroxine tablets. Advice needed.

[FLAMB]

Has anyone had any symptoms of change of taste/smell, ingestion and brain fog with taking mercury pharma Levothyroxine tablets?

I had the same symptoms with taking Teva Levothyroxine and switched.

Is there a brand people don’t get these symptoms with?

[SlowDragon Administrator]

Being inadequately treated can cause indigestion

How much levothyroxine are you currently taking

How long on this dose

Do you have any recent thyroid and vitamin test results

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Do you have Hashimoto’s

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

Lactose intolerance is common with Hashimoto’s. Often results in excessive catarrh and that might affect taste and smell

[FLAMB in reply to SlowDragon]

I have only recently (past 2-3 months) been diagnosed, so they have started me on 50mg. I am currently having monthly blood tests to get my levels stable again. I was very late to realise I had it & my body was in a bit of a state by then.

During tests I was tested for vitamin deficiencies - results were my iron is low. I was also tested for auto immune diseases, which came back negative.

However, my white blood cells are extremely low. The doctor thinks this is related to my thyroid but can't say for certain.

I also have alopecia, which is getting worse.

Thank you for the blood test tip, I certainly don't do this! I go in the morning but by then I have taken my tablet & had breakfast! The next test I will follow your tips.

Do you think it is worth getting independent tests?

Nonetheless, the tablets make me feel rotten. I can barely eat. I am going to change them again today to the brand Actavis, now rebranded to Accord. Fingers crossed I react better to them.

[SlowDragon Administrator in reply to FLAMB]

What were your results after last blood tests

50mcg is only a starter dose, and should be increased upwards in 25mcg steps

Frequently symptoms are not due to the levothyroxine, but to being under medicated

[FLAMB in reply to SlowDragon]

I don't know, but reading all the forum replies I should be able to ask for print outs and be able to share! Tests due on Wednesday, so I'll grab results then and share.

This is all so brand new... I have no idea where to start!

[SlowDragon Administrator in reply to FLAMB]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Frequently GP only tests TSH which is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

[SlowDragon Administrator in reply to FLAMB]

Far too frequently people get left of low dose too long

Important to get dose increased as fast as tolerated

As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)

Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine

Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up

When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine

But (here’s the bit most GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop

So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday

So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine

So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine

Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....and many patients can’t tolerate starting on more than 50mcg and need to increase slowly. Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase. But we still very often need to increase up to full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Very important to regularly retest vitamin D, folate, ferritin and B12

These are frequently very low

Hair loss often due to low ferritin and/or low zinc

[SlowDragon Administrator in reply to FLAMB]

Lack of appetite and gut symptoms are often due to being under treated

Low stomach acid and slow motility through gut

[Wolfiesmom08 in reply to SlowDragon]

This happened to me when I lowered my dose. The smell of food was nauseating and I could not cook or barely eat. First time in my life that ever happened! Of course now I’m on almost triple that dose and those problems are gone.

[Dorey69]

I tried levo of all brands and they made me feel worse. Really bad side effects, so come off it. But loss of taste was one side effect.

Up to now my doctors have refused to treat me with anything else 😢

My TSH was 32. I’ve been researching since. But don’t feel well at all.

[Sylvia22]

I think you should mention about taste and smell as it has been one of the symptoms of Corona Virus.

[SlowDragon Administrator in reply to Sylvia22]

Very true...good point

[FLAMB in reply to Sylvia22]

Already done a covid test and pregnancy test as soon as I got the symptoms. Both come back negative.

[blondpalomino]

Hi Flamb,

Not those symptoms, but I got very bad migraines when I switched to Mercury Pharma thyroxine. I had been on Wockhardt for 20 years since I had my thyroid removed, never had any problems getting that brand until the coronavirus problem, I have tried different pharmacies but no-one can get them. Now I am on North Star, which is not perfect,seems stronger than Wockhardt and gave me upset stomach when I first took them, but that has settled down now.Also they make me feel a bit hyper and I can't sleep very well, but only other one is Teva and I tried that before and it didn't agree with me, so I will have to put up with it.

[FLAMB in reply to blondpalomino]

Teva didn't agree with me too!! Apparently it doesn't agree with a lot of people.

It is funny isn't it, some people say its the brands/companies of the tablets and other people say it's because the dosage is incorrect. It's all a little confusing.

Thank you for this though, all this information is great to know!