Coming off Levo

[Janwhitton]

I am on 75mgs of Levo since July 2017. In October 2017 I lost my sense of smell. I am convinced it’s due to Levothyroxine . I have had all test by ENT dept all clear, they haven’t got a clue. Said I have to live with it. It’s naff ! Can’t smell anything or taste much! I have found a study about people on Levo who have lost their sense of smell within 6 months of starting it, I fit into the same category of participants. . I want to stop taking to see if my sense of smell returns so what can I replace it with and where and how can I get it?

[Tsega]

Good morning Janwhitton, I have been taking 125 mgms since 2013, I was so weary before that that the results of taking Levothyroxine was super. I certainly have no loss of smell in fact I would like to have that! I have worked in some smelly places...

[shaws Administrator]

You would have to switch from levothyroxine to NDT (natural dessicated thyroid hormones) or try adding T3 to your T4. The NHS wont prescribe T3 any more nor NDT so you'd have to source privately.

Once we are diagnosed as hypo, we cannot stop thyroid hormone replacements at all as you might find you have more problems. Levo converts to T3 and T3 is the only Active thyroid Hormone and drives our metabolism.

These are clinical symptoms:

Thyroiduk.org.uk/tuk/about_the_thyroid/hypothyroidism_signs_symptoms.html

All should be relieved when on an optimum dose.

[Janwhitton in reply to shaws]

Thank you . where can I source?

[Caroline888]

Hi Jan

I lost my sense of smell/taste about ten years ago. Only started treatment (levo) last autumn. A viral infection might have been the cause or even hypothyroidism itself since, in retrospect, I think I went undiagnosed for many years and loss of sense of smell and taste are in the list of hypo symptoms. Certainly levothyroxine was not the cause in my case. In fact since I started taking levo my sense of smell is slowly returning! This might of course be a coincidence.

Hope this is helpful.

Best wishes

Caroline

[Janwhitton in reply to Caroline888]

Thanks my GP is adamant it’s not my Hypothyrodism !! They won’t refer me to an endocrinologist as I feel well. Despite not being able to smell anything! I have felt I have been undiagnosed for some years and have perhaps thought it to do with being Hypo for some years as always struggle to recover from a virus taking 5-6 weeks with post viral debility. I am in a quandary as to what to do . Stay on Levo or change to NDT.

[Caroline888 in reply to Janwhitton]

Unless your GP is very different from mine, he probably knows very little about hypothyroidism and its signs and symptoms. Good, knowledgeable GPS are a rare breed it seems! Since starting levo my health has improved in so many ways. Symptoms leading to quite a few hospital visits over the last eight years but never to any specific diagnosis have eased or gone away completely since starting treatment with levo. Hypothyroidism affects every cell in the body.

If I were you I would persist with the levo. Other treatments are more difficult to source and may not be the answer you're looking for.

If your loss of sense of smell was caused by a viral infection, giving up levo won't help at all and could just lead to a whole new set of problems.

Whatever you decide to do, I hope you feel better soon.

Best wishes

Caroline

[Janwhitton in reply to Caroline888]

Thank you . Have had steroid nose drops and camera up nose . All clear . May push for Appt with Endocrinologist . I asked before but GP said could not refer me due to loss of sense of smell!!! Said it would be rejected. May have to pay and see privately.

[Knit1pearl1 in reply to Caroline888]

Hello Caroline, iv had no taste or small sensations for years and just been diagnosed with hypothyroidism.

I had no idea that it was linked....

[Caroline888 in reply to Knit1pearl1]

It does seem likely doesn't it? Quite a few members seem to have had impaired sense of smell at some time or other. Hopefully it will get better when we reach our optimum dose of levo.

I hope you are feeling optimistic now that you are being treated. I have only been taking levothyroxine since last October but already feel so much better and am also slowly recovering my sense of smell. Hope this happens for you too!

Best wishes

Caroline

[Marz]

I went T3 only for several years and have only recently re-introduced T4. My sense of smell and taste did not improve during that time. Please do not make yourself more poorly

[Janwhitton in reply to Marz]

Ok did it improve when T4 introduced.

[Marz in reply to Janwhitton]

I was started on T4 after diagnosis in 2005 - and realised after a few years my T3 was low in range so it was added to the T4. I then went T3 only and only about a year ago I read something about needing some T4 so decided to add some back in. I am fortunate as I live in Crete and can buy T4 OTC so did not involve a Doc in my decision !

Nothing has changed re smell and taste either before or after thyroid treatment ! As mentioned in your earlier thread I had a horrid cocktail of drugs for Gut TB when I was 27 - some 45 years ago !

Maybe research Olfactory Lobes - in the brain - responsible for smell and taste. I have not done so - just remember that from Human Biology at school ! - the strange things we remember ....

[Marz in reply to Janwhitton]

nytimes.com/2011/04/19/heal...

Had a Google and found the above article - sounds interesting ....

[Janwhitton in reply to Marz]

Thanks I have read this previously.

[Marz in reply to Janwhitton]

Oh - sorry - 😊 Have you read anything else that may help fellow sufferers ? Please post if you have - thank you ...