Loss of sense of smell: Hi, just wondering if any... - Thyroid UK

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Loss of sense of smell

lilliput profile image
23 Replies

Hi, just wondering if any other hypos have noticed this. I had no sense of smell for about 2 years now, to begin with it seemed to come and go.

I'm not too bothered by it, in the grand scheme of things, partly I think due to priorotising as I have felt so poorly in other ways. My sense of taste is still seems to be there and I enjoy food. (I do like strong flavours eg mustard, chilli, ginger).

I've found a couple of articles relating loss of sense of smell to hypo but always thought mine was due to smoking. I now smoke e cigs ,still no sense of smell. My doctor nodded when I suggested smoking as a reason..

When googling , I discovered that my local hospital i the only one in the UK to have a "smell" clinic.Seems a strange use of NHS money though. I can understand it if taste is affected.

My thoughts are why should hypo affect sense of smell? If it does. Smell is more brain orientated. Plus why is smell important? Would be lovely to have it... But a clinic? Could shed some light on workings of hypo.

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lilliput
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lilliput profile image
lilliput

Debating whether or not to ask to be referred Doc didn't mention it.Getting worried re pattern of syptoms.

helvella profile image
helvellaAdministrator

The clinic itself says:

Our sense of smell (olfaction) is constantly helping us throughout the day whether we’re noticing it not. The delightful aromas of lunch on its way, the smell of cut grass or flowers can put a smile on many faces.

The scent of rural Norfolk reminds us all where we’ve chosen to live and don’t forget that your sense of smell is also a highly sensitive warning system - alerting us to danger signals such as a gas leak, supper burning on the stove or the mouldy food in the fridge.

Losing this sense can therefore have various negative effects – whether it’s missing out on the sensory pleasures of the world around us, losing this honed warning alert or occasionally it may be a sign of more serious health problem.

Anosmia is the term used for a complete loss of smell and hyposmia is the term used for a reduced sense of smell.

In the UK to date there has been no specialist centre for smell and taste disorders such as can be found in many European countries and in North America. This smell & taste clinic therefore is the first of its kind in the UK.

jpaget.nhs.uk/section.php?i...

I think you will find that a lot of taste actually comes from smell. We only have relatively basic taste receptors (salt, sweet, bitter, sour and umami).

My stepfather lost his sense of smell (he believed after a course of antibiotics for bronchitis) lost what interest he had ever shown in food.

My mother seems to have lost much of hers and is clearly somewhat upset at the blandness of everything.

I would go if you can get there.

Rod

Willowluv profile image
Willowluv

My smell and taste is very reduced...I find it disturbing as I wouldnt know if house was on fire and have over cooked food as not been able to smell it.......I also cant tell if food tastes or smelk off!......I would go along as this sense is an important part of every day life. X

rossilin600 profile image
rossilin600

I also have lost both senses and find cooking quite difficuilt when having to sweeten or add seasoning, I to once cooked a chicken for dinner and as soon as family came home they could smell it was off have been to hospital who had me try nasal washouts, steroid sprays and anti biotics but it has been 7 years so cannot see then coming back now. I have just been dignosed with hypopituitarism whether this has anything to do with it I am not sure but will ask on next visit.

DaizeeFoo profile image
DaizeeFoo

Before starting Levo I would get days when all I could smell was a nasty burning smell. Quite horrible :-(

onhereagain profile image
onhereagain

Hi everyone

I do not know if relevant but being deficient in Zinc causes lack of sense of taste and smell.

Question does Thyroxeine have effect on vitamin and mineral absorbtion as I am now Vit D deficient and you need Zinc and Magnesiam to absorb Vit D?

poing profile image
poing in reply toonhereagain

I am zinc deficient and the fact that I've had an altered sense of taste for over two years was the big clue that finally allowed me to work it out! (along with LOW liver enzymes)!

My sense of smell is completely unaffected though. In fact, my sense of smell is over-active. I have chemical sensitivities and can smell things long before others - and I think THAT is also characteristic of zinc deficiency too. When the liver can't process toxins (which is one of the implications of being zinc deficient), then the sense of smell is upregulated to keep you safe.

My sister lost her sense of smell after a bump on the head (she got run over while walking on the pavement) because it severed the nerve from her nose to her brain - apparently this is quite common in head injuries.

So maybe loss of sense of smell is reflects a loss of nerve function and then that affects the sense of taste in turn.

lilliput profile image
lilliput

Think I'll mention this when I go back to the doctor to see what the criterion for being referred is. Did he know that this clinic existed? I suspect age related or smoking may be mentioned, but I'm not that old and have virtually stopped smoking tobacco. Having said that I've managed, and even still enjoy using perfume. Very curious as to who is referred. several problems or the only one? I don't know.

It strikes me as a research project.

lilliput profile image
lilliput in reply tolilliput

It think many people would not see their doctor at all about loss of smell. So where are the clinics patients coming from?

helvella profile image
helvellaAdministrator

As if on cue, the BBC publishes this story:

29 June 2013 Last updated at 23:33

Taste and smell: What is it like to live without them?

By Denise Winterman BBC News Magazine

Double Olympic gold medallist James Cracknell says he is unable to smell or taste very much due to a brain injury he suffered. What is life like without these senses?

Duncan Boak lost his sense of smell in 2005 after a fall resulted in a serious brain injury. With smell said to be responsible for 80% of the flavours we taste, the impact of losing it has been huge.

"It's so hard to explain but losing your sense of smell leaves you feeling like a spectator in your own life, as if you're watching from behind a pane of glass," he says.

"It makes you feel not fully immersed in the world around you and sucks away a lot of the colour of life. It's isolating and lonely."

Like Boak, double Olympic gold medallist James Cracknell suffered a serious brain injury. He was hit by a petrol tanker while riding a bike in the US in 2010. In an interview with the Radio Times this week he said he was now unable to smell or taste very much.

Eating is just something he has to do to survive, like putting petrol in a car.

The loss of taste, known as ageusia, is rare and has much less of an impact on daily life, say experts. Most people who think they have lost their sense of taste have actually lost their sense of smell. It's known as anosmia and the physical and psychological impact can be devastating and far reaching.

"Studies have shown that people who lose their sense of smell end up more severely depressed and for longer periods of time than people who go blind," says Prof Barry C Smith, co-director and founder of the Centre for the Study of the Senses.

"Smell is such an underrated sense. Losing it doesn't just take the enjoyment out of eating, no place or person smells familiar anymore. It is also closely linked to memory. Losing that emotional quality to your life is incredibly hard to deal with."

Sue Mounfield lost her sense of smell three years ago after having the flu. She says the smells she misses the most are not to do with food.

"It's things like smelling my children, my home and my garden. When they're gone you realised just how comforting and precious these smells are. They make you feel settled and grounded. Without them I feel as if I'm looking in on my life but not fully taking part."

Losing your sense of smell also makes the world a much more dangerous place. Even in the womb smell and taste are "gatekeepers" for allowing things into our bodies and rejecting harmful toxins, says Smith.

It nearly had extremely serious consequences for Alan Curr, who lost his sense of smell after knocking himself out in a gym lesson when he was eight.

"When I was at university someone left the gas on by accident. I was home all day but never noticed. At about 3pm my flatmates returned and I was in a bit of a daze but had no idea why. They smelt gas as soon as they walked in the door."

Boak says he only really started to understand why he was feeling depressed six years after his accident. He started to read about the sense of smell and had a "road to Damascus" realisation that it was the reason he was feeling such emotions. He has now set up the UK's first anosmia support group, Fifth Sense.

<much more at link>

bbc.co.uk/news/magazine-230...

Rod

in reply tohelvella

Rod - was trying to fix your italic blip, but it looks fine to me...!?!?! x

helvella profile image
helvellaAdministrator in reply to

Now it looks fine! :)

Apologies for the mistake.

I've just posted a question about smell loss - or in my case Anosmia - complete loss of smell and diminished sense of taste. I've been hypo for about 14 years and never think much about it. But today I was out at a lunch party and someone asked me to smell their wine and I said I can't smell anything. He then got his wife who has the same problem and is also hypo.

The thing is that I take a drug called Methotrexate for RA and at a higher dose it was causing a foul taste (sour milk and rust) so this has brought me down to a lot lower a dose and foul taste has gone but sense of smell has really gone. To the extent that I couldn't smell slurry that was being sprayed on fields I was walking past so it is really gone.

As your articles say it is actually affecting my whole state of mind and feeling about the world.

My sisters are both profoundly deaf from birth and it feels like I've lost something much more significant than I would ever have imagined compared to hearing or sight - which would of course be much more missed. But it had never occurred to me how depressing it is not to be able to smell freshly cut grass or the sea or food. I am wondering if I should explore links with T3 and thyroid in the hope that this sebsory side of things can be addressed? Tilda

poing profile image
poing in reply to

Hi Tilda,

I just posted higher up in this thread that I reckon that loss of sense of smell could be a nerve problem...

Then you mentioned methotrexate. Now, I'm not completely sure on things, but I think that particular drug depletes folate levels - and when you have very low levels of folate (vitamin B9) and vitamin B12 then you can get neurological problems.

Have you been tested for folate/B12 lately?

I think you should definitely take this problem to your doctor!

poing

Hi Poing. Yes I've been wondering about neuro stuff too. I take 5 folic tabs a week. Was last tested for B12 in August of last year when I had all over pins and needles - they were okay. In the end, because of my high ESR, it was decided by my consultant that the pins and needles were caused by inflammation pressing on nerves. I already had the bad taste when I was tested for b12 but can't say when I noticed the sense of smell vanishing - quite a while ago though. I don't seem to have a very straight forward type of RA really - it keeps sending me and my doctors on strange little detours. I did mention it to her today but in the context of hypothyroidism. If it continues I will tell my rheumy when I see him next. Thanks! Tilda

in reply to

Oh and as a small update - my GP just phoned to tell me about my blood results and she didn't think T3 testing was necessary as my TSH and T4 were fine a few months ago and none of my present symptoms (foot and wrist ache and sore knees) correspond with Hypo (as the woman yesterday suggested) or B12 deficiency (yes I asked!) but my ESR (inflammatory marker) has shot right up to 44 which is a big hike so we both think that its likely that my RA is getting more active. I asked her about smell loss and she said I must ask my rheumatologist because it could be linked to my medication - injectable methotrexate. Thanks for all your help.

poing profile image
poing in reply to

I reckon you should get a follow up on the B12 all the same, if only to rule it out. It's even more important to check it because you take the folic acid supps. Folic acid will mask the effect of low B12 deficiency on red blood cell size, so if you did become B12 deficient, it wouldn't show up in a general blood test (CBC).

In any case, the normal range is too wide in this country. I had electric shooting pains in my wrists with B12 of 199 ng/L (I think that was the units), which is inside the range and considered to be okay in the UK, but clearly it wasn't okay. In Japan, they think B12 should be over 500.

lilliput profile image
lilliput

nhs.uk/conditions/anosmia/P... Not sure how I missed this but NHS Choices includes underactive thyroid as a possible cause of anosmia. plus Medhelp: both reliable, and fairly conservative sites.

I have no sense of smell at all but still enjoy food. I cannot honestly say that I am really depressed by it and would be far more frightened if I lost my sight or hearing.I have a cataract in one eye plus a tiny, non symptomatic one in the other. I'm delaying surgery as to say I'm afraid would be an understatement. I really fear loss of independence and am not encouraged by the 1 in 20 figure for patients not satisfied by the outcome of surgery. Or 2 in 20 for both eyes?

Having said that, I would like my sense of smell back and will talk to my GP about it. It's possible that being under medicated with Levo could be a factor. I'm only on 50 mcg raised from 25, and am being gradually moved up.Plus I still smoke e cigs.The timeline for regaining smell after quitting tobacco seems to vary from 3 days to 6 weeks.

I feel generally that I have aged prematurely. I'm 53 and have some ailments which would only usually affect 65 plus.

Insomnia at the moment bothers me the most. I just cannot function without sleep.

Sleep has passed me by for most of my life so I'm used to being tired but I totally agree about the cataract being much worse than the loss if smell. I don't come here much because I have Rheumatoid Arthritis and that is so much more scary to me - as are the cytotoxic drugs I'm on - that I just take my 100mg of Levo and never give my hypothyroidism much thought mostly. The GP was so dismissive of the T3 issue I broached with her today that I'm almost relieved that my RA is more active rather than there being some new issue with my thyroid to battle over! Smoking is a real no no for people with RA and if you have autoimmune issues re your thyroid then it really would be something if you could quit. I know its hard though. But my friend said she hadn't realised how much she was missing out on until she quit and found her sense of smell and taste all came back.

Bigbird7912 profile image
Bigbird7912

I can't smell anything after a really bad cold, I do not taste flavours either. I can detect things that are salty, spicy, sour & sweet as these come from your taste buds. Flavours are detected by smell. I'm in my 8th year now and it can be debilitating, I feel that I miss out on so many lovely smells.

in reply toBigbird7912

yes and folk ask you at least twice a day 'smell this taste that' - I can tell if salty/sour etc too - didn't stop me putting salt in coffee 'tho - Yuk!

I missed this post - and good links...

I miss my sense of smell and taste - sometimes I get a whif of a smell if my mouth is open (like a snake!) - Had a few dangerous scares - gas on, - can't even smell smoke, bad chicken, burn stuff, but I can tell off milk by the little floatey lumps - and daughter told me Sunday that egg didn't smell good (as I was eating it). Luckily hubby now mostly cooks...

Tried Zinc, B12 & B vits (not thyroid 'tho) - looking at teeth next (& for sinus trouble). Any ideas welcome :D

I missed the smell of my new granddaughter :(

P.S. I said to my GP I have no sense of smell/taste 3 years ago after my PT (it was on /off before I think) - She said 'Oh, now when did THAT happen?' in the most uninterested condescending voice I can ever remember in 53 years of my life! - and she said CFS isn't a bad diagnosis to have (I beg to differ) - I was a one doc gal before that - avoided seeing her since

Marylyn profile image
Marylyn

You should get your B12 levels checked you can lose your taste as well.My sister lost both & was put on antidepressants they did nothing.it amazes me how drs can't diagnose anymore.

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