Can anybody shed some light on phantosmia and relation to hypothyroidism

[uchi]

I have been smelling the smell of smoke where there is no smoke. It's been a while and just found it may be related to my hypothyroidism.

Any information on this topic will be appreciated, Thank you

[Jazzw]

It does come up from time to time. As you say, it’s not uncommon in those with hypothyroidism.

It’s also known as an olfactory hallucination. Sometimes it can be a neurological issue—how are your Vit B12 and folate levels?

[uchi in reply to Jazzw]

Thanks for the reply. Vitamin levels are fine. I was just wondering whether it relates to the thyroid medication. A side effect?

[helvella Administrator Thyroid UK]

I have collected links to quite a number of previous threads in this subject. I'm sure it isn't complete.

Reading some of these might help you - but feel free to add to this post - or post a fresh question.

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:

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...

[uchi in reply to helvella]

Thank you for the collected material🙏 Anything about causes and remedies?

[helvella Administrator Thyroid UK in reply to uchi]

As far as my experience goes - it fades over time. It could take years to drop to nothing but is likely to reduce intensity and frequency much sooner.

And I am convinced it is related to hypothyroidism.

Other than the very simple approach of keeping an eye on your dose (of whatever thyroid hormone(s) you take), I know of nothing specific to help.

[Ziggy17 in reply to helvella]

That's an impressive number of posts - many thanks for pulling them all together!

[helvella Administrator Thyroid UK in reply to Ziggy17]

I try to remember to add posts as and when they appear. But sometimes miss a post or forget. (This one is already in my list for the next time the subject comes up! )

[Ziggy17 in reply to helvella]

Ah, that's a very good idea! So well organised...

[helvella Administrator Thyroid UK in reply to Ziggy17]

Luck - not organisation.

[uchi]

🙏

[Anthea55]

Over lockdown I signed up to the local online library where I read a fascinating book called 'A Smell of Burning: A Memoir of Epilepsy ' by Colin Grant. He's a doctor whose brother developed epilepsy and the book is about that and the history of epilepsy.

Apparently an unusual smell can give warning of an attack.

This quote from the web For some people with epilepsy, seizures are preceded by a warning. Doctors refer to that warning as an aura, an event that can manifest as music, swirling colors, a memory, a sense of impending doom, a smell or taste, a rising nausea, or an intense sensation of déjà vu.

See this link to the Epilepsy society.

epilepsysociety.org.uk/abou...

[uchi in reply to Anthea55]

Thanks. I have read it can be a sign for other things as well. However, since I have Hashimoto+hypo, I am trying to see if from others' experience and knowledge there is any link there. 🙏 you

[Anthea55 in reply to uchi]

Yes of course it can be a sign of many other things. My apologies that I didn't make that clear. It will be part of a bigger picture. It may also be related to food intolerances or nutrient deficiences.

[Marymary7]

I’ve been smelling beef burgers / barbecue smell all the time. I caught Covid some time ago and presumed it was that, a post viral thing? I dont eat meat and have not been by anyone having a bbq.

[uchi in reply to Marymary7]

It is indeed a post cover sign, so may be applicable to you' not to me. I have had phantosmia for sometime now, on off. So, just trying to understand why/when etc.

[RedApple Administrator in reply to uchi]

uchi, If your phantosmia has occurred only since you've been having thyroid problems, then there's a good chance the two are connected. The 'wiring' between the nose and the brain is affected by the level of thyroid hormone, which plays tricks on us

It's a long time since I experienced it, but I seem to recall it happened when I was on the wrong dose of levo. That may have been to much or too little, I can't be sure now. But it was a recurring thing for me for quite some time.

[uchi in reply to RedApple]

Thank you for the input. Related to that, I think it may occur when I drink too much wine , which interferes with medicine absorption=too little medicine get through. May be an explanation. 🤷‍♀️

[RedApple Administrator in reply to uchi]

Seems unlikely... but just in case, make sure you leave a good long gap between your meds and your wine! I take thyroid meds in the morning, and don't have any alcohol until after 7pm.

[uchi in reply to RedApple]

Same as you re medicine and alcohol timing. However, it's more re - long-run consequences. Overloading organs such as liver in the processing of alcohol interferes with other essentials.See for example abstract: ncbi.nlm.nih.gov/pmc/articl...

Impact of alcohol use on thyroid function

[RedApple Administrator in reply to uchi]

Haven't time right now to properly read the paper you've linked to (thanks though!), but if you don't have a working thyroid then things are different.

Alcohol can't affect the hormone output of a gland that's already dead, or non-existent. By taking thyroid meds, you're feeding the hormone into your bloodstream via a different route, and not asking the thyroid to produce any.

My personal alcohol consumption is little and infrequent (just a glass of wine with dinner, only at weekends), so I don't feel I'm 'overloading' any organs.

[helvella Administrator Thyroid UK]

Following mention of Covid, there was an interesting newspaper article the other day:

Scientists identify ‘trigger molecule’ for Covid-related changes to smell

Molecule found in coffee typically described by people with parosmia as disgusting or repulsive

theguardian.com/world/2022/...

Marymary7

[HighlandMo]

I’m hypo and have had this problem a couple of times - smelling petrol when there was none. It lasted a few months and thankfully disappeared again.

[SpringFairy]

Good question. I've also had this for a few years since my post-viral severe M.E. crash. Always cigarette smoke. Phantosmia is very common in M.E. patients. Usually for me when my inflammation is high.

My MCAS (Mast Cell Activation Syndrome) Dr believes it's activating mast cells.

Looks like my hypothyroidism might be a reason then too 🤪

[Kathleen-1]

I have had these peculiar smells for several years but they are decreasing . Had a session yesterday which made me realise that I had been free for quite a while. I agree that it is very worrying.