Manky mouth

[Ghillykarp]

Hi I was started on Levothyroxine 50mcg a week ago. My question is why does my tongue feel sore In places, a metallic taste in my mouth and my tongue coated. Is it related to my condition or is it separate. Thanks

[NWA6]

And definitely not pregnant?

[Ghillykarp in reply to NWA6]

No definitely not. Thanks

[greygoose]

Could be nutritional deficiencies. Have you had your vit D, vit B12, folate and ferritin tested? Most important to test those when you're hypo.

[Ghillykarp in reply to greygoose]

Thanks for your reply. I have had my folate done which was ok. But my b12 was classes as high. Don’t know what this means. So have asked to speak to the gp. Most of the literature is about low B12 not high. How does this impact on my health and why are my kidneys not excreting the excess.

[greygoose in reply to Ghillykarp]

Well, 'high' is just as meaningless as 'OK', 'fine' and 'normal'. They are opinions, not results. Do you have the actual numbers?

And what about things like ferritin, zinc, magnesium, vit d...? All suboptimal nutrients can cause symptoms.

[Ghillykarp in reply to greygoose]

Yes here are the figures

B12 839 range 197-771

Folate 14.6 range >34

T4 10.1 range 12.0-22.0

Ferratin Ok

No vitamins where requested by the gp

[greygoose in reply to Ghillykarp]

Your B12 is fine. The range is unrealistic.

I think that folate range is wrong - or you are very deficient.

Your FT4 is very low! What are you taking? T3 only?

'OK' is not a result, it is an opinion, and doctors' opinions are very often wrong.

Vit D?

[Ghillykarp in reply to greygoose]

Thank you for replying. I am learning about this condition and will persue the vitamin option. My T3 was not measured by the bloods

[greygoose in reply to Ghillykarp]

It rarely is.

[Buddy195 Administrator]

Hi Ghillykarp,

I’ve had very similar symptoms and have seen both dentist and GP. Both linked symptoms to anxiety, but dentist also recommended I swap my metal filling for a ceramic one. I had the old filling removed, but still get the metallic taste when I’m anxious. I find juicing veggies helps heal my mouth- especially adding a bit of parsley and ginger.

[Ghillykarp in reply to Buddy195]

Thank you for your advise. I am getting my head round this new condition. I am looking at nutrition as a way forward and this is in itself a mine field. But I will gather advise from all areas.

[humanbean]

The condition of having an altered sense of taste is called "dysgeusia". There are lots of possible causes :

healthline.com/symptom/dysg...

I would have expected nutritional deficiencies to have been included in the list, but they weren't. Zinc deficiency can alter taste perception, for example.

...

Before your next prescription for levothyroxine is due, make arrangements in advance to get a paper copy and take it to a pharmacy of your choice. You might want to phone around the pharmacies in your area and ask which brands they have available to fill your prescription. Try a different brand to the one you are currently taking. Make sure to take notes of the symptoms you have on your current make and also note your symptoms on any future makes that you get.

Short list of possible symptoms : thyroiduk.org/tuk/about_the...

Long list of possible symptoms : hypothyroidmom.com/300-hypo...

Another thing that is worth doing is to score your symptoms. So, for example, if you have eye irritation you might score it as 3 out of 10 one month. Then the following month, after some change you've made, your score may get worse and be 6 out of 10.

I think there are four brands of Levo available in the UK, and there is nothing to stop you trying them all (over the course of a few months) and finding the one that suits you best. Once you know which one helps you the most you can ask your doctor to specify that make on your prescription itself.

You may find this document of interest - note that some makes of Levo are prescribed under multiple names :

thyroiduk.org/tuk/treatment...

[Ghillykarp in reply to humanbean]

Thank you very much for the information you have provided on this post. I aim to speak to my pharmacist about the medication I am on as suggested. Also as I am new to this condition I will use your suggestion of the symptoms guide which will give me a bench mark for any changes.

[radd]

Ghillykarp

I too developed a metallic taste in my mouth after starting Levo in 2011. I have hashi & hemochromatosis. The taste developed to sweet or salty at times and my saliva became gluelike.

In 2015 I added T3 to my Levo, had all amalgam fillings removed & started investigations at Guys Oral & Maxilla Facial Clinic having extensive bloods tests and UD Paratid (salivary) gland ultra sound scans. They said there was no evidence of Sjögren's syndrome, infection or gum disease and my salivary glands had normal function, so no diagnosis was made.

In 2016 I switched to NDT and have found well-being in all other aspects of my health with the exception of my mouth.

I am g/f, eat clean & have just started dairy free after reading that a tiny percentage of the population have a genetic impairment that inhibits their ability to digest milk. Milk leaves a slimy white film on my tongue and this impairment is a totally separate issue to the usual intolerance or allergy to lactose, casein, albumin or whey.

It was a medical research published paper & I have searched for it again & again but appear to have lost it for the moment. 😳

If you goggle “metallic taste” you will get millions of hits that mainly suggest vitamin deficiencies but there are people who are otherwise well like myself with optimal nutrients on a quest to identify this awful problem.

Sorry I have no positive advice or experiences but wanted to tell you my journey so far.

[Ghillykarp in reply to radd]

Thank you for your reply it was very interesting. I think we all start a journey once diagnosed with a long term condition. I will look into vitamin supplements. But will this effect the Levo absorption.

[radd in reply to Ghillykarp]

Ghillykarp

All thyroid meds must be taken 1 hour before food, 2 hours before supplements and 4 hours before calcium, iron or vit D.

[joiaz]

Hi Ghillykarp Which brand are you on?

Within a few days of first starting Levo I experienced a really horrible dry, metallic sensation / taste in my mouth. I put it down to the Levo.

I mentioned it to the pharmacist and he switched me to a different brand – from Mercury Pharma to Almus (previously called Actavis) – and the problem quickly disappeared.

When renewing my prescription to the GP (by email) I also specified Almus to make sure I got the same brand each time.

I think the ingredients are similar in both brands, except the Mercury Pharma has sodium citrate in it, which must disagree with me.

Perhaps try a different brand to see – just to rule it out?

[Ghillykarp]

Thanks for the heads up on this. I would never have thought to consider the ingredients in the medication. Good one