Does anyone suffer with extremely dry lips due to Levo? I’m not sure that’s the cause but for months and months my lower lip is constantly bone dry, my vermillion border has broken and now appears to have white marks chipping in along the border, it makes me very embarrassed as people lick their lips (as if for me) when talking to me as it’s that obvious! When I exercise my lips feel waxy and my mouth and throat are excessively dry - any ideas if this is due to my under-active thyroid? It’s like my body is crying out for something!?
I’m having my blood tests next week wonder if they will highlight anything. I was thinking of trying B12 & Vit D after reading posts on this site but I don’t know what I’m doing so don’t want to further upset the Apple cart!
My story is on my bio if anyone is needing more information.
Thank you
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Levo50
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So, looking at your bio you’re only on 50mcg levothyroxine and have been on this dose for years
From reading posts on here you will know that’s only a starter dose for vast majority of people
First step is to get FULL thyroid and vitamin testing
See EXACTLY what’s going on
Low vitamin levels are extremely common, especially if under treated
Low vitamins tend to lower TSH and cause poor conversion of Ft4 to Ft3
Low Ft3 tends to lower vitamins .....so it becomes a vicious circle
Which brand of levothyroxine do you always stick to?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies alongside TSH, Ft4 and Ft3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Is this how you normally do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I’ve not previously been aware to fast and have bloods early in the morning but I will do this next Thursday thank you. Hopefully I’ll manage to obtain a copy of my results.
Northstar is just a boxed brand .....50mcg is Accord .....but beware if/when dose is increased to 75mcg because the Northstar 25mcg is Teva and Teva upsets many people
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva, Aristo and Glenmark are the only lactose free tablets
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Thank you - I’ve checked my strip and can see my 50mcg is indeed Accord. When I had a bad turn I’ve just checked the brand and it was TEVA - OMG! Completely changed my personality and I became so paranoid! I def will not be going on that again!
I’ll keep you posted of my results - I can’t believe how knowledgeable everyone is on here!! It’s such an eye opener!
Hi, your post jumped out at me as I too have been struggling with very similar dry lip problems. I have hyperthyroidism, well managed now, lichen planus and recently diagnosed Sjögren’s syndrome. The latter was diagnosed by my dentist when I asked about my constantly dry and uncomfortable mouth. Last month I suddenly developed the very lip symptoms you describe and absolutely nothing relieved it. In desperation I started applying the saliva replacement gel I was prescribed onto my lips and the relief was immediate. Not suggesting you necessarily have Sjogrens, and have to say the relief is quite short lasting but it’s great to get some relief at bedtime, on waking or after eating. It’s called Biotene and can be bought online also. Just an idea, good luck!
I wonder if my full bloods will reveal whether I have SS!
Currently looking on Amazon at Biotene (my lips are more of a problem than my mouth), I can’t see any lip products but toothpaste and mouthwash may be worth a try, have you tried these at all?
Definitely similarities. I don’t use the toothpaste or mouthwash but a good idea, thanks. The product I use is biotene saliva replacement gel. Prescribed for the original main issue of extremely dry mouth and tongue, I tried it on lips in desperation as all obvious remedies ineffective and it calms it like magic, for a while at least. Very sticky but what the heck...🤣.
When I was titrated up on Levothyroxine last year, when I got to 75mg I started with pains in my chest and shooting up my neck, numb patches and shooting electric shock pains in my feet. My GP was angry with me when I told him and basically said I was malingering. I went back to see another GP in the practice and as soon as I walked through the door she said I wasnt well and arranged an urgent scan of my neck suspecting SS. The scan confirmed damage to my Parotid glands. I then saw my NHS Endo who said the Levo had caused a SS flare x
Aww thanks for sharing - my word sounds awful, did you change brand of Levo when you went to 75mcg (my understanding from knowledgable admins on this site is 75 is only available in TEVA) ....
Oh - I’ve never heard of that I’m on Accord (Have been forever without problems) but briefly switched to TEVA for 4-5 months it truly sent me crazy and physchotic (Sp), terrifying experience but luckily switched brand back and feel back to normal.
Hi Levo50 you have described exactly how mine have been since 2010 when I was changed from Goldshield Eltroxin to Mercury Pharma Levothyroxin. To date I am still suffering with this problem and feel very strongly that it is to do with how the acacia powder has been heat treated, which has to be done correctly before it can be used. Somewhere on this site is a post with information about Acacia Powder in The Handbook of Medical Excipients (posted by helvella ) which mentions soap not being compatible until it is heat treated properly.
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