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Hi all!

I have Hashimoto's Thyroiditis and I take levothyroxin 50mcg daily...what is driving me nuts is for a long time now, I get a phantom "smoke" smell. I ask my husband if he smells it and he doesn't....well, tonight it's back again and it is driving me nuts. I don't smoke...and no one in my house does. I so live in an apartment but this would happen at my other place too, before I moved. Has anyone heard of this phenomenon being associated with thyroid problems? Curious if anyone else out there has this issue...and if so, do you know what is causing it?

Sincerely,
Michele :(
 

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I have not heard of this problem being associated with thyroid, but I have heard of the problem being associated with sinus issues - "gunk" in the sinuses that can be treated/removed. Do you see an ENT? He/she can take a look in your sinuses. (Plus, and ENT probably sees patients with this problem somewhat frequently. ENTs are experts in sinus issues, and are also trained in thyroid issues.)
 
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I have been having this problem on and off for YEARS...sometimes it lasts for a few days, and sometimes it lasts for weeks. I have a family history of migraines and thyroid issues and I have been diagnosed with secondary Hyperparathyroidism, and recently with Hypothyroidism. One of my sisters has been diagnosed with Hashimoto's, and she and another sister also have smelled "smoke" at random times. I am currently searching for an Endocrinologist to help me figure out what causes this problem, but I truly believe it is related to thyroid, parathyroid, or endocrine function...
 

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It could be an olfactory hallucination. My grandmother had these, has anybody told you there is a connection between smelling non existent smoke and thyroid disease? Anyhow my grandmother smelled smoke that wasn't there and moved apartments three times, drove my uncle nuts. I'm interested to know what a doctor says.
 

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For those of you that are frustrated, you're not alone. This is a wide spread "phenomenon" that many people experience. And I don't use the word "phenomenon" to reflect, it is just something you are imagining. The smelling of smoke has been called, phantosmia or phantom smell. oddly it is also called, olfactory hallucination. These terms certainly define them as just basic hallucinations. BUT, I believe it is a symptom of something that is not right in your body. (Some believe it is from loved ones that have passed away ??)

My girl friend has been mentioning smelling smoke for about 3 weeks or so. She has always been sensitive with smells, but this time she cannot find the source. I thought nothing of it. But when she got a message from her doctor, to discuss her blood tests, in particular, her thyroid gland, that was enough for me to start my "research". I have a science back ground, and a passion for finding answers and doing research. I am NOT a Dr., but of the little research I have done so far, just on the general topic "phantom smoke" I find answers that state, well, it could be a tumor, part of migraines, seizures, schizophrenia, depression, disfunction of the olfactory receptors, sinusitis, epilepsy, Parkinson's, Alzheimer's disease, brain injuries, bacteria infections and now that I just learned, Thyroid problems.

Another way of saying: we really don't know. I will mention my mom has been very sensitive to smells for as long as I can remember (years ago, I sometimes thought she was just imaginning it) She also has a thyroid imbalance, taking medication for it.

I recommend that you take careful notes or logs, of as much as you can in regard to life style, foods, sleep patterns, etc... Take the advice of your dr. with a "grain of salt' The drs. out there have different thoughts and reasons on the subject, which should give you motivation to "question".

Even though I do not experience what you are going through, I still have a lot of empathy for all of you. I wish I had concrete answers.

MD's doing research: Dr. Donald Leopold (University of Nebraska) and Dr. Jordan S. Josephene, MD (Lenox Hill Hospital, NY)

Take care, Steve
 

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YES! I also have this phenomenon. I had it a couple of years ago and went to an ENT about it. That was before I was on Synthroid. I just recently hit the roof with my TSH at 11.42 and found out that I also have Hashimoto's Disease. I looked up my past notes and I also have had elevated TSI. I recently had a slew of intense symptoms, and I started synthroid. I am now about 10 weeks out from my first dose, and my symptoms are improving, but I started getting the smoke sensation again. I grew up with my mom being a smoker, so I have to say that it is almost exactly like having a smoker in the room. (I have never smoked, btw). I just looked up the notes from my ENT, and he states that it is probably related to allergies and nasal obstruction. This would make a lot of sense, because this was in August several years ago. And I just started having this again, with allergies just starting up in our family this week. I just started taking my fluticasone. Just a couple other factors to throw out there. Thank you, Steve, for the info you wrote and for helping us with this!
 

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I have experienced this and used a nasal spray for a day or two and it would go away. I wouldn't recommend long term use of store bought because they have preservatives. I found a recipe and made my own saline spray.
 

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I am so relieved to find this board! I have had phantom smells for years. I was diagnosed with Grave's 15 years ago and a few years later I was diagnosed hypo/ Hashi. My smells vary. Sometimes it's like freshly cut grass (only much stronger), a chemical based smell like car exhaust (but different) and the smoke smell. The smell can vary in intensity and lasts from 2 to 5 days. I've had an MRI to rule out a tumor and once that came back clear, I feel my doctor just lost interest in finding out what causes this. Has anyone had success finding the cause?
 

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My ENT prescribed a nasal spray (different from the fluticasone) at the time. I wasn't very good about it. He really thought it had a lot to do with the allergies and nasal obstruction. Do you have seasonal allergies? Just as a follow up, I recently got my annual illness, which I get once allergy season for me hits, so this all ties in. I personally think my allergies start up (even though I don't get a lot of symptoms) and then it starts to accumulate in my nasal passages, I start to smell the smoke, and then I get sick. It is a very bizarre symptom, I know! BTW, I too was diagnosed with Graves and then 8 years later hypo/hashi! :)
 

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I have both chronic sinusitis and hypothyroidism and have within the past 6 months started smelling phantom smells that smell exactly like cigarette smoke to me. I have done some research of my own and from it thought it may be caused by my sinusitis since I have had an MRI and CT scan within the past year that both determined there were no tumors. However, finding this site has made me realize that my hypothyroidism could be playing a part. I pray that we all find relief from these phantom smells and whatever it is causing us to have them. take care everyone and thanks for sharing your experiences, so that I know I am not alone in this. Please keep us updated if any of you do find out anymore concerning this as I will try to also.

Erika
 

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By all the responses this is a thyroid thang.....after all......

When I became hypothyroid with Hashi's and given synthetics which pushed me even more hypo, my sense of smell became enhanced. I had a much greater sense of smell.

If someone peeled an orange two blocks away I could smell it.

As for smoke smell. My opinion is you are actually smelling someone smoking within a few blocks and your sense of smell is greatly enhanced.

I would say to a Family member "do you smell that"?

Their response was you're crazy. That I might need to see a shrink.

I mentioned it to the Endo I was seeing at the time and his response was the same as my Family's.

Once with the right medical professional and on the right hormone and dose my sense of smell is back to normal...….

I have no sinus problems...….

I thought I was the only one with my own odd thyroid symptoms.

I'm glad to see "now" that I'm not...….

PS> I've had even stranger symptoms that I was afraid to tell anyone about........

They are mostly all gone and I get minor symptoms from time to time which are manageable.
 

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A CT scan I had (when first in hospital for this a few years ago) said I have sinusitis, which apparently is a potential cause for this phantom smell thing.

Of course my Endo dismissed it for thyroid and said it must be sinuses.

I see my PCP about it later this week. It's not all the time or very strong, but still interesting.

The potential is thyroid issues cause sinusitis and thus the folks having this in common.
 

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I woke up Sunday morning smelling Bacon - YEA!! I was SO disappointed when I walked into kitchen and NO BACON :-(

So I cooked some -
 

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Good news the tests for additional autoimmune diseases was negative.

I have an MRI of my head in a few months (not doing them right now).

Pretty sure it's just my sinuses. it comes and goes.

But if it were a Bacon smell, maybe I'd just deal with it. haha.
 

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I have been having this problem on and off for YEARS...sometimes it lasts for a few days, and sometimes it lasts for weeks. I have a family history of migraines and thyroid issues and I have been diagnosed with secondary Hyperparathyroidism, and recently with Hypothyroidism. One of my sisters has been diagnosed with Hashimoto's, and she and another sister also have smelled "smoke" at random times. I am currently searching for an Endocrinologist to help me figure out what causes this problem, but I truly believe it is related to thyroid, parathyroid, or endocrine function...
I have been having this issue for about 18 months now. It happens at odd times, sometimes for a few days, at work, at home, driving, sleeping. I just cant escape it.
 
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