You may have read my previous posts about an awful taste in my mouth. I've tried everything to eliminate it and/ or find the cause.
I think it's related to my medications. I'm on 50mg Levo since October. I had no symptoms I was aware of when my hypothroidism was picked up in a blood test.
At first the Levo gave me heartburn. Now - I believe- it is causing an evil sour taste in my mouth and on my tongue. It is unbearable. Two trips to my surgery resulted in advice about gargling and flossing!!! Oh my! Here I am at my wits end, in tears on a daily basis and have been prescribed a mouthwash!!
Just to let you know, I have gargled, flossed and danced the dance of the seven veils and still this bitter taste persists......
I get some relief from Peptac liquid but that's only temporary.
SO..... I have stopped taking Levo. I've been off it 6 days. The bitterness is still there but is less noticeable. I also have the occasional stretch of time (hours) where I have no symptoms at all. Coincidence??? So, what next? My GP only works one day a week so I can't make an appointment until next Tuesday 7th Jan by which time ill have been 2 weeks without Levo and should know for sure.
Although I'd be keen to hear comments please don't scare me - I've not done this lightly. I was at my wits end. I'm not averse to taking thyroid meds either - I just suspect my body doesn't like Levothyroxine.
Thanks all - Happy New Year too!
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mrspinkrat
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It takes about six weeks altogether for levo to gradually leave your system. If you do find relief in a week or two, you will have proved it is the levo so ask your GP to prescribe T3 until you see an Endocrinologist.
This is probably a long shot, but I'll mention it anyway in case it helps someone else. 'Tonsil stones' can be one cause of the problem you're describing. Lots of info via your favourite search engine
Hi RedApple, I stumbled on this post and after seeing your reply, I just want to say to anyone especially the original poster reading this that I sometimes get tonsil stones and when I had my last MRI I was told my tonsils were enlarged. I'm on thyroxine and have Hashimoto's.
I honestly don't know how visible they might be, especially to someone who isn't actually looking for them! If they are smallish, maybe not so easily seen? I do hope you find the answer soon.
Hi Mrspinkrat,
Youre not going mad!!! The awful taste in your mouth is precisely the reason that I had to stop taking levothyroxine. I couldn't explain to anyone how bad it was. It was like having acid in my mouth, permanently. It was far worse on Eltroxin and when it became unbearable after a couple of months I stopped the levo and went onto ERFA THYROID. I completely get it!! I have read about other people with a similar problem and I am convinced that I cannot take any form of levo.
My heart goes out to you because it is just hideous.
Oh wow! You are the first person I have come across who has experienced this too! Thank you so much for taking the time to reply! Yes, it is like acid! Bitter, sour but not like reflux or acid indigestion as it's only in the mouth and on my tongue. Thank you Joesmum I can't tell you the relief you have given me! I've been thinking all sorts, trying all sorts! I permanently have mints on the go. Did you stop Levothyroxine completely and/or simply switch?? How long did it take for the taste to fade please? It's lessened after 6 days but it's so horrible I'm thinking about it ALL the time and scared it will come back with the same vengeance.........
Thanks SO much, hope to hear back from you soon xx
It's hit and miss time-wise really but possibly, yes, worse as the day goes on. I've even considered burning mouth syndrome as I'm in early menopause too!
Sorry for the delay in getting back to you.........Xmas, new year chaos..........
I just stopped levo and went straight onto erfa ( gradually building it up) I can't remember how long it took for the horrible taste to go away but all I can tell you is that it did. It was absolutely vile and utterly intolerable. Just hearing you talk about it brings it all back. I don't know why it happened but you can bet your bottom dollar that it was caused by the levo. Never again will I take it! I hope you can get it sorted soon because its just the worst! I have read about other people on other forums with this reaction so it's not just you and me........there's others out there too!
Hi Joesmum, this is interesting. The question is, does your GP and/or endo also 'completely get it'? I can imagine it's not easy to persuade a medic that levo can do this
I have had the same for many weeks now and I am not on levo, it is not the medication its (according to what I have been told) a low vitamin B12 level!! There is a list of B12 rich foods that are said to help, peanuts is one so I bought some, it has improved enormously!!
Now that is strange! I too have eaten a large amount of nuts over the Christmas period!
And the taste has lessened. Though it coincides with stopping the Levo! I also take multi vitamins which include b12. Should I take an extra b12 supplement on its own?
I have Hashimoto's and have taken Levo for over a decade. However I was taking Methotrexate by injection for my rheumatoid arthritis for 18 months and stopped because of the rank taste I had constantly while on this drug. No one seemed to understand how awful it was and, because it was listed as an extremely rare side effect of this cytotoxic drug, no one seemed to favour me stopping the drug because of it. However I did and the taste lifted - although I still get a nasty taste in my mouth some mornings. I think, in my case, it might turn out to be because of Sjogrens because my eyes are very dry too. So it might be worth trying a synthetic saliva spray or gel just to rule out that your mouth is too dry. Sjogrens is also an autoimmune disease so can go with Hypothyroidism.
Whatever the cause I just wanted to say that I understand completely how depressing it is to have a foul taste in your mouth. For me it was worse than the pain of RA - and that was saying a lot! X
Well the plot thickens.......... Maybe it is a lack of B12. This blasted illness is the pigs knickers isn't it! I've just been on one website where apparently it's not a serious condition and if you just a pop a pill all will be fine!......IF ONLY !!!!!!!!!!!!!!!!!!!
I do not know why you think that peanuts have B12 in them? Getting B12 is a significant issue in vegan/vegetarian diets because sources animal origin.
Peanuts do, however,contain, folates. And folates can mask some signs of B12 deficiency. Which is why it is generally considered a good idea to start B12 supplementation before or at the same time as folates, if needed.
Thank you RArebird, that's interesting! My mouth has been bone dry throughout this, even sipping water does not help. Is the gel available without prescription do you know? It's something I would be happy to try. I will google sjrogens - but can't say I've noticed dry eyes.
And thank you for your sympathy and understanding..... It really is hard to explain to anyone and I'm sure my Drs think I'm over-reacting but I can honestly say I couldn't live with this indefinitely - it's all-consuming
You might find this paper (actually, I can only find the abstract accessible) interesting - though in no sense an explanation:
Am J Med. 1975 Sep;59(3):354-64.
Defects of taste and smell in patients with hypothyroidism.
McConnell RJ, Menendez CE, Smith FR, Henkin RI, Rivlin RS.
Abstract
Taste and smell functions were measured in 18 unselected patients with untreated primary hypothyroidism, and in 15 of the 18 patients after treatment with thyroid hormones. Before treatment, 9 of the 18 patients (50 per cent) were aware of some alteration in their sense of taste, and 7 of the 18 patients (39 per cent) were aware of some alteration in their sense of smell. Distoritions of tase (dysgeusia) and smell (dysosmia) were frequent complaints among the untreated patients; dysgeusia was observed by 7 patients (39 per cent) and dysosmia by 3 patients (17 per cent). Median detection and recognition thresholds for four taste stimuli salt (sodium chloride), sweet (sucrose), sour (hydrochloric acid) and bitter (urea), and for two smell stimuli (pyridine and nitrobenzene), were determined in each patient before and after treatment with thyroid hormones. Before treatment, decreased taste acuity (hypogeusia) for at least one stimulus was observed in 14 of the patients (83 per cent); the most common abnormalities were in the detection and recognition of bitter stimuli. Median detection thresholds for both smell stimuli were also markedly elevated (hyposmia) before therapy. Treatment with throid hormones largely reversed both the taste and smell defects. In one patient, taste and smell abnormalities were completely corrected after 16 days of treatment with thyroxine. This study indicates that taste and smell defects are common clinical abnormalities in primary hypothyroidism, and suggests that these defects may contribute to the anorexia and lack of interest in eating which are frequently observed.
interesting link - someone mentioned metallic taste too with high iron, Moggie?
unfortunately I know I have to eat... nearly cooked some nasty chicken 'tho - couldn't tell it was off (in date!)... of course GPs dismiss my nonsense of smell/taste - but I think it's quite dangerous really, esp when I don't realise I leave the gas on....
Think Dr S mentions this in his book too... 50 mcg is quite a small dose so it's possible that it may have been supressing your thyroid function rather than helping - which is why the taste developed as a hypothyroid symptom? Dunno, just a thought I had. Perhaps increasing to a more usual dose might have helped.
My sister has Pernicious Anaemia and has been told that the only way to absorb B12 is by injection, not sure who told her or whether its true, seeing the doc later, hope to have an answer by the end of the day!!
I ate the peanuts because I have a list of foods rich in B12 and peanuts were on it, they were the easiest to get so I got some!! I am not about to eat veal or any of the products from veal calves as I think the practice abhorrent .
There are plenty of sources of B12 that do not depend on veal calves. Much of the world's supply of B12 for supplementation purposes (animal and human) comes from bacteria. Indeed I cannot understand why veal would be recommended as a source, since I think that older beef generally has more B12.
Glynisrose, You don't have to worry about British veal. It is called 'Rose Veal' and the calves are free to wander, not like the Continental system where they stop them from exercising to keep their flesh white. They are the male calves born to Dairy cows, if they are not killed in this country, they would be exported to the continent - who knows what happens to them then. Look up 'British Rose Veal' and you will see that difference. The flesh is pink, not white. Unless, of course, you don't eat meat anyway.
I buy calves' liver - when I can get it, and also Rose Veal - again, when I can get it - so I can make Viener Schnitzel with the right thing instead of chicken!
Oh my word I am in tears here as for the past year I have experienced the same thing I am at my wits end . My Gp did bloods gave me mouth wash but nothing has worked ,The taste has become stronger as time has gone on .It is so strong it makes me choke sometimes . I also have considered stopping my meds to see if it is that . The back of my throat also swells sometimes .
Mrs Spinkrat I will be following your post closely .So relieved it just isn't me .
...I too have a nasty taste from a post-nasal-drip type issue. I inhale Olbas Oil which does help. I also have poor sense of smell. Check the ingredients on the mouth wash - maybe try an organic one. Some of the ingredients may be irritating in the regular ones.
Mine isn't from my nose it's all over the mouth . I haven't used the mouth wash for ages as it didn't make the slightest bit of difference . The taste really is horrendous ,it makes me feel ill .
Mrs Spinkrat what brand of Levo are you taking ? The roof of my mouth is really sore now from sucking mints !
Well, I don't think my Levo was to blame after all. I just take a generic 50mg Levothyroxine - I can't find a brand or manufacturer on the packet.
It seemed to be improving after 2 weeks off the meds but sadly yesterday it was back with a vengeance.
My GP today suggested Gaviscon for acid reflux. I'll give it a go - ill try anything now.
My tongue is very sore today with a bitter taste on the back. Sometimes when I lick my lips they taste bitter too. My mouth is dry. The only relief I get is either from sucking mints or when I'm asleep. How old are you motherelle? Could it be menopause related? Big hugs xx
I am still no better mine seems to go from being very salty to sour to bitter and yes my lips burn and taste awful .
I don't think it's menopausal with me ,I am 57 and haven't had any symptoms for a while .
It may be one of the other autoimmune diseases i'm waiting the results of a full profile .Mints and chewing gum (which I hate ) have become my best friends .
Hopefully between us we will come up with an answer ,here's hoping .
I know this is two years old but what has happened since? I just started Levothyroxin and the chemical metallic taste is bad for me. I found this searching to see if anyone else has it. Especially eating fruit. Hideous.
Hi there. I was just reading back through all the posts - it brought back memories of an awful time!! Although I'm
Still on Levothyroxine, the awful taste in my mouth is long gone I'm relieved to say. I believe it was down to the particular brand of Levo I was taking and my local pharmacist was really helpful in letting me try different brands. He now has a note on my file and orders in the particular brand that I find ok!! My goodness, I hope you get sorted as it was an awful thing 😞 Good luck xx
I know this is a very old post...which brand where you on and which one worked? I have to be on levo as I haven’t got a thyroid otherwise I’d stop! But just a week ago I started a new brand and the unbearable metallic/sour/bitter taste started. I have requested a change which I will start today, but was interested to know which brand unsettled you.
I do so hope the horrible taste in your mouth has now gone? I am very interested to know if your still not taking your Levo? I stopped taking mine only 2 days ago, I do not have the awful taste in my mouth you suffer from but lots of other horrible symptoms, I would appreciate it if you would let me no if you feel better for not taking the levo! Thankyou in advance
I am still taking Levo but a different brand. The taste has gone. If you can, talk with your pharmacist about other brands. Mine was more than willing to help. The one I can't tolerate and which I believe was responsible for the taste was Mercury Pharma. It didn't go immediately as it was still in my system but gradually faded away over a week or two. Hope that helps! Xx
Hope you are well and without the horrible taste. I have developed a bitter taste in my mouth and I have been on levothyroxine for 7 months. I first had Mercury pharma 25 then almus 50. Then 75 Mercury for 6 weeks.
I have developed this bitter taste recently and changed my levothyroxine brand.
Do you mind telling me which brand you take now? Are you still taking 50 MCG? My dose has not been finalized yet but I think it would be either 50 or 75 or somewhere in the middle. This week I switched to 50 actavis and 25 wochkart.
I am really upset with some or the other new symptoms gripping me when I think 'i will get better now'.
Hope you can reply after this long. I want to know what brand you are taking.
Are people taking the liquid version of this drug. It's not clear to me whilst reading your comments. I too have an horrendous taste in my mouth all the time but it has only been since I started taking the liquid version of levothyroxine (the fillers in the tablets cause me other horrendous side effects so eventually got my GP to agree to change to liquid, which took ages and agreements from the Commissioners). I never got this rancid taste whilst taking the tablets.
In fact I have purchased a neti pot in the hope that it might help clear the taste problem because I think the liquid levo side effect is not so much the bad taste, which I have, but the fact that it causes sinus issues which are where the bad taste is coming from (my personal opinion). I think that cleaning sinuses out using a neti pot might help with this issue. I am going to give it a go. The constant nasal drip is where I am getting the horrendous taste from and the fact that it is constant means that the content is all over my mouth and down the back of my throat. Perhaps my sinuses are blocked or there's a bacterial problem. Just a thought for you guys too.
In early November I went to urgent care for racing heart and they found subclinical hypothyroidism in one of the blood tests. They put me on 75 levo for a couple of weeks and the bitter taste started up week 2- like I had licked a battery with both sides of my tongue. I also felt terrible, nauseous, anxious, jittery. They switched me to armour thyroid (from pigs) in the same amount and the battery taste flared up again along with the other symptoms. On Dec 10th, I finally talked to another physician who told me to stop taking the meds and put me in contact with an endo. It has been 3 months off the meds and the battery taste still flares up more than half of every week. My eyes are also dry now and blurry. I never had any of this before the levo, and I'm only 34. My doctor and endo can't explain it and say "if it was the levo, it should have gone in 6 weeks". For those of you that had it and it went away, I'd be interested to know how long it took!
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