I’m new to this wonderful group and seeking som... - Thyroid UK

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I’m new to this wonderful group and seeking some answers! Could Levothyroxine leave you with taste and smell issues?

Doddy72 profile image
13 Replies

When I started taking Levothyroxine last summer I suffered with a loss of smell, nothing smells as it should, I also had phantom smells such as burning wood. Additionally certain foods taste awful, salad peppers now taste fusty/mouldy. Cucumber seems so intense I can’t eat it, greens generally taste off. Fruit is also affected. Coffee just tastes burnt (just some examples).

I work in the food industry part of my job is deciding what to present to the supermarkets for sale during the next season, for this as well as shelf life analysis I have been specifically trained for organoleptic analysis of food! Basically I have been struggling to do my job since taking the medication! Is it just me who has this, or is it more common? Any feedback would be appreciated. It’s worth mentioning that I have not knowingly had covid that may affect my sense of smell/taste.

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Doddy72 profile image
Doddy72
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13 Replies
SarahJane1471 profile image
SarahJane1471

Welcome to the forum 😊great knowledge here.I have to say I personally have not noticed any change in sense of taste or smell. However there may be other people who have and I’m sure they will answer shortly.

Meanwhile have you tried the search bar to see if there are previous posts on this issue?

helvella profile image
helvellaAdministrator

Phantosmia - Phantom smells

There have been quite a few posts here over the years about phantosmia - getting the sensation of a smell when it doesn't really exist. All too often, the reported smell is some sort of burning, often tobacco, but can be anything.

I used to be convinced I could smell someone smoking in circumstances where it was impossible!

Here are a few previous posts - but there will be others. I try to keep adding when new posts on the subject are posted. You will find many cross-references between posts.

I am sooo confused I feel I am abnormal

healthunlocked.com/thyroidu...

For the last three days all I can smell is petrol when I'm no where near any no matter what I do does anyone know

healthunlocked.com/thyroidu...

An odd question I know but has anyone else experienced smelling cigarette smoke when none is present?

healthunlocked.com/thyroidu...

Hi has anyone else experienced an awful smell of ammonia in nose after walking exc and then feel as if you have run a marathon ? I

healthunlocked.com/thyroidu...

Woken by strong sweet cloying smell but no one else can smell it

healthunlocked.com/thyroidu...

All I can smell is petrol!

healthunlocked.com/thyroidu...

Horrible burning wood smell in my nose

healthunlocked.com/thyroidu...

I can smell lavender when not wearing or being near it, should I worry

healthunlocked.com/thyroidu...

Getting the smell of petrol Everytime I breath

healthunlocked.com/thyroidu...

Is it my thyroid?

healthunlocked.com/thyroidu...

Confused

healthunlocked.com/thyroidu...

Burning smell, heel pain & weight loss

healthunlocked.com/thyroidu...

Smelling Smoke

healthunlocked.com/thyroidu...

I stink

healthunlocked.com/thyroidu...

Prednisolone, levothyroxine and taking it with food

healthunlocked.com/thyroidu...

THYROID AND MENOPAUSE TOGETHER.

healthunlocked.com/thyroidu....

Phantom smells

healthunlocked.com/thyroidu...

Phantom smells...?

healthunlocked.com/thyroidu...

I keep smelling burning paper.

healthunlocked.com/thyroidu....

Phantom tastes and mouth problems

healthunlocked.com/thyroidu...

Can anybody shed some light on phantosmia and relation to hypothyroidism

healthunlocked.com/thyroidu...

Doddy72 profile image
Doddy72 in reply tohelvella

Thank you for these links, much appreciated. I do often get the sense of petrol when it’s not possible! I’ve even jumped out of bed in a panic thinking my house was burning down. I will have a good read through these 😊

helvella profile image
helvellaAdministrator in reply toDoddy72

Funny how petrol, tobacco smoke (specifically) and all sorts of burning seem the most often reported (in the context of thyroid). :-)

Have added this thread to my prepared list of links.

Have never been able to abide green peppers - raw or coked (red, etc. are OK). Greens (assuming you mean pretty much cabbage family), also cannot stand - other than raw white.

It is difficult, though, to know how much is a return of our individual gustatory and olfactory functions. And how much is something going "wrong".

Now been on levothyroxine for over ten years and feel that my sense of smell is better now than for many years. But having given up smoking, and moved to a less heavily built-up area might well have been nearly as, or more, important. If I go for a walk, I'll smell flowers, etc., which once I might have missed.

waveylines profile image
waveylines

I havent had this problem or heard of it before.. As you've recently started on them you could try a different brand.

The other thing to consider is that Hypothyroidism is called the great mimicker for good reason - can cause all sorts of very weird and wonderful symptoms. If this is the case it should go as you become optimally treated.

Jazzw profile image
Jazzw

Hi Doddy72

How much levothyroxine are you taking each day?What brand are you taking?

Have you had any recent thyroid blood tests done?

My guess is that you’re probably undermedicated.

Doddy72 profile image
Doddy72 in reply toJazzw

I’m on 125mcg Levothyroxine. I think the brand is Wockhardt 25mcg and Almus 100mcg. It’s been about 5 month since my blood tests (I don’t know the results, do I just request them from the GP?). Will I be able to ask the GP for a different brand, or do I need to go Private?Thanks for your advice.

SlowDragon profile image
SlowDragonAdministrator in reply toDoddy72

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.

Link re access

healthunlocked.com/thyroidu...

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

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 plus both TPO and TG thyroid antibodies tested.

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high 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.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

If antibodies are both negative

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally before 9am and last dose levothyroxine 24 hours before test

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

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

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Come back with new post once you get results from GP

Are you currently taking any vitamin supplements?

waveylines profile image
waveylines in reply toDoddy72

You have a right to all copies of blood tests so yes ask your GP surgery for a copy. Secondly is it 5 months on this dose? If so its definately time for them to check your thyroid level. Your GP will check TSH (thyroid stimulating hormone) & if you are lucky your Ft4 (which is for your T4 level which is a thyroid hormone storage form). The other thyroid hormone is T3 (blood test Ft3) this is the usable form of thyroid hormone and isn't often tested sadly on the NHS. Checking for your thyroid hormone levels is important. When you get the results from your GP post them on here with the reference ranges, number in brackets. You can also test thyroid hormones privately using a finger prick method. If you look on Thyroid UK website they have the places to go to.

I really feel for you as in your job your sense of smell is so critical.

Anthea55 profile image
Anthea55 in reply toDoddy72

I'm sure I've read on here that mixing brands can cause problems.

Better to get one brand and cut up to make required total. Also once you've found a brand which you prefer stick to it, if necessary insist that the brand is written on your prescription. You may find that it's worth chatting to your pharmacist to choose the best option. Don't let them just give you whatever they've got in stock at the moment.

This page from the Thyroid UK website lists medication for hypothyroidism so you can compare the ingredients.

thyroiduk.org/if-you-are-hy...

helvella profile image
helvellaAdministrator in reply toAnthea55

I'm sure I've read on here that mixing brands can cause problems.

I think this gets taken a bit the wrong way at times.

If you do not mix them, you know any issues must be due to the one brand you are taking.

If you do mix them, you cannot readily decide whether it was A or B causing the issues.

But if you tolerate both, there is no deep reason not to mix. I usually do mix brands - within the ones I find OK. However, I do my best to keep the bigger tablet the same (100 microgram Accord) at all times so any slight variation will only be in the lower dose tablet (25 microgram). I am not aware of any that mustn't be mixed because they interact in any way.

SlowDragon profile image
SlowDragonAdministrator

Just a thought…..have you also had Covid….this can affect taste

Doddy72 profile image
Doddy72 in reply toSlowDragon

To the best of my knowledge I haven’t had Covid, regular testing conducted through work.

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