I smell of onions!!!!

I was diagnosed borderline hypo 5 years ago with a TSH of 5.1 I am not on any medication due to levothyroxine allergies, which I have written about on here before. But the thing that's really worrying me now is that for about the last 6 months I smell of what I can only describe as boiled onions. Sorry to be so personal but I notice it more when I pull my knickers down to go to the loo, so I am assuming that it's something to do with my urine. The smell has got progressively worse and I'm having to have a shower twice a day and I am starting to worry that other people can smell it. Apart from my hypothyroidism and fibromyalgia I haven't got any form of UTI or problems of that nature. Has anybody gor any idea what can be causing this could it be because my thyroid is getting worse? My TSH was 7.2 a few months ago, I had it tested last week and it is 9.78 I'm going to see my endo next week but would like to be armed with some info before I mention it to her so that she can't just fob me off. Thanks everyone! Sharon

20 Replies

  • Strange smelling urine is definitely a symptom of thyroid hormone deficiency, and your rising TSH backs this up. You need to get onto some form of thyroid medication asap I would think. If levothyroxine is not an option, then a trial of T3 seems an obvious next step. Hopefully the endo will work with you on this now.

  • You make it sound so simple - and in our World it is but in my endos World. I have suggested to her that I try T3 and she says because your FREE T3 & FREE T4 markers are normal if I give you T3 it could make your heart fail and I am not prepared to risk it. This is why I've never been on anly meds for the last five years and I am getting worse because this is the sort of garbage I keep coming up against. Oh God I am so frustrated! Thanks for coming back to me. Take Care Sharon X

  • Hi I fully appreciate what you are saying WE ARE NOT ALONE about smelling onions you have confirmed for me it is not all in my head. My doctor laughed at me when I told him about it. I am on T3 now and hoping the smell will subsided. Did you sweat quite badly with the aura too?

    Best wishes Kerry

  • Hi Kerry, Yes, I am cold to normal all day and then at night I am having really bad night sweats. I am really confused, for years I felt cold in bed especially my feet, but now I''m the complete opposite, my feet feel like I've got them in a fire and the resty of me is just sweating buckets - only during the night between 10pm and 6pm. Can't be due to the menopause (I'm 52) because I had a full hysterectomy 15 years ago and I have been told that there is no way I will experience a menopause because I went through it at the time I had my operation. Glad to know I'm not alone with the onions (not that I would wish this on anybody else) I have always been a clean queen and this is embarrassing. Thanks for getting back to me. Happy Easter! Sharon X

  • Hi Sharon, I to had a hysterectomy when I was 36 and although went through hot flushes immediately afterwards, still had mini flushes when I reached 52, which because I still had my ovaries I assumed this was about right. Do you still have your ovaries? I did not think menopausal flushes were anything like thyroid flushes, and at age 52 they were over in about 18 months. Wish you well, Janet.

  • Hi Janet, No I haven't got my ovaries and I quite agree with you there are no similarities between menopausal and thyroid flushes. Only problem is try telling my endo that, all I get is at your age you must be going through the menopause, they are like a stuck record spouting the same stuff over and over again! Thanks for your reply. Take Care Sharon X

  • Hi Sharon all the symptoms you describe I have but since being on T3 they have subsided.

    You need to get a trial of T3 go to your doctor and insist. I have by passed the NHS and requested to see a private endocrinologist Dr B at lemington spa. That was two weeks a go now I am on T3 it was worth every penny. My symptoms subsided within a day. I am 52 aswell Sharon yes it is hormonal but only because your thyroid is crying out for more support. What your doctor is telling you about T3 is just rediculous.

    Take care Sharon I hope to hear you have been succesful in getting T3.

  • Hi Kazzerb, How ironic I used to live in Leamington Spa I could have seen a proper doctor and I'd probably be sorted by now. Unfortunately, over the past 5 years of trying to get a diagnosis I've spent all of my savings on private specialists and now I can't afford to go privately so I'm totally dependant on the NHS - God help me! I'm going to see my GP on Tuesday and my endo on the 9th April so I'll have to keep fighting I suppose. Fortunately for me I am not the sort of person not to let ignorant doctors get me down so I will keep trying but it is very, very wearing and we shouldn't have to use what precious little energy we have to fight with doctors that are supposed to be helping us! Thanks for your help. Take Care X

  • Where do you live pity you can't get to see Dr P or Dr M they are very good doctors.

    I actually wish I had gone to see either of the doctors I live so close to them both.

    Yep don't let the doctors grind you down. You have a right to demand how you want to be treated.

    Take care Kerry x



  • I live in Taunton, Somerset now. The endos down here have not helped me at all, well the ones I've seen anyway. Because I am not able to take thyroxine they seem to think that I am being awkward and I'm not it's not my fault. God I'm fed up. Take Care X

  • Are you allergic to levo itself or to the additives in it? I had this problem and my GP agreed to prescribe purified thyroxine made by Martindales - eventually! I take it in the middle of the night when my bladder wakes me thus ensuring my stomach is completely empty and I have to say it has made a tremendous difference to my life. Anyway, jst thought I;d mention it :)

  • Hi Barbara, This is the problem I don't know. I do know that I have had a bad reaction to every kind of thyroxine that I have tried including liquid eltroxin and I get exactly the same reactions all the time. I am going to see my endo next week, I am very confused as to whether I need to be on NDT or T3 any idea how I kind work this out before going to see the endo please? Sorry for the delay in wqriting back by the way, I've not been well over Easter slept most of it away due to sinusitis and vertigo.

  • Does this sound like hypo?

    Cold all the time, even on a warm day. Hands, feet and tip of my nose are usually freezing cold. Night sweats, but it seems to be just the tops of my legs. Sweat actually trickles down onto the sheet. I often smell ' onion', usually when I'm in bed. Under my eyes are quite 'puffy'. Always tired and as I get older I sometimes fall asleep in the afternoon. I'm 65 and female. I'd appreciate any input as I'm apprehensive about going to GP.

  • Yes it does sound like you have joined the ranks of the hypo's. you sound very similar to me, cold during the day and sweating at night, but I smell of onions all the time!!! You need to get yourself to the GP don't be apprehensive hust go and tell them the same as you have said here and let them take it from there. If you have a decent GP they should automatically think of ruling out thyroid, but if not suggest to them that it is on youyr mind and ask for blood tests to be done. Good Luck

  • Thanks for your help. Will keep in touch.

  • I hate to say this but I have that onion smell but only under one of my armpits. It's like only one sweats. When I take off my top one arm will smell like onions and the other fresh as a daisy! Now what is that all about?? Perhaps only half of my body works?? Come to think of it, the onion smell is under the right armpit. I suffer weakness on the left side of my body !! Hmmm!!!! Welcome to the onion club !! X

  • Have you asked about Armour thyroid? It's not a synthetic.

  • Hi, Yes I have tried Armour and T3 both over a year ago now, I felt a bit better for about 3 weeks then they built up in my system and my usual reactions came back, which was a shame because I was losing 1/2 a stone a week and felt much better than I have in ages. I have now found a good al round specialist that actually cares about my health and he has finally listened to me that because of my very low BP 80/60 plus awful headaches/head pain especially in the mornings, vision loss/double vision, very low cortisol and basically a long list of symptoms that are specific to Hypothalamus/pituitary problems he sent me for a synacthen test on Tuesday this week so I am waiting for the results of that. I have been to get my eyes checked and my vision has altered much more in the space of one year than my optician would have expected so I am also getting an MRI done soon to look at the hypothalamus/pituitary axis. All of my problems started when I fell flat on the back of my head from a standing position in 2009, here I am 5 years feeling more ill than I ever have in my life and I still haven't got a definative diagnosis (although I have a very good idea). Just a thought to all you guys who are struggling to get a diagnosis out there if you feel more ill than they ever have in their life with violent head pain, low BP, awful vision, light headed/dizzy, tired all the time etc. then think back to whether you fell over and banged your head at any point in the last few years and go and tell your GP it may shed more light on the subject and help you to obtain a quicker diagnosis. I haven't got my diagnosis yet but I have been through hell for the last 5 years and I know that there's a lot of you out there in the same position. Good luck to everyone I hope you find you answers like I think I have finally found mine!

  • Just read something here states side. Alcohol can give you the onion smell.. are you consuming that ?

    I hope you feel much better soon.

  • Hello

    My name is Tina I am 52 will be 53 in 2016. I have had a full hysterectomy no ovaries. I am on a hormone patch i have the smell of onion on my 2 fingers on right hand and I have gotten allgeric to deodorant s I have tried clinical strength and everything out there can't wear it it breaks me out. I can smell onion under my arms I use rubbing alcohol that helps out pretty well. But I really don't have a problem with my urine smelling it is usually not a problem there. But I can't stand this onion smell on my fingers. Not left hand just right hand. I am a hair stylist and I keep my hands in water constantly. I don't even eat onions because they make me sick my stomach I get double over with pain.

    I do have IBS I do know this already. Can anyone give me suggestions please. Thanks Tina

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