Thyroid..dry mouth all the time

[Tracy99]

Hi everyone, I've been on thyroxine tablets for 18 months, since being on them my mouth is constantly dry, beforehand I'd never chew mints and chewing gum, now am addicted to them, anybody had the same?

[SlowDragon Administrator]

welcome to the forum

How much levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Please add most recent TSH, Ft4 and Ft3 and thyroid antibodies

Extremely important to test vitamin D, folate, ferritin and B12 at least annually

Have you had these tested

What vitamin supplements are you taking

[Tracy99 in reply to SlowDragon]

Hi,Thanks for replying,

Am having a thyroid blood test on Monday but only because I asked for one, being over 12 months since last one, my gp told me my iron levels where low pre diagnosed with low thyroid, will ask gp to give me blood test for all your suggestions

[Anthea55]

Do you always get the same brand of levo? Many of us find that we get different side effects depending on the brand.

[Tracy99 in reply to Anthea55]

Always same BRAND, ARISTO, 100 mic

[SlowDragon Administrator in reply to Tracy99]

so you are lactose intolerant?

[Tracy99 in reply to SlowDragon]

I wouldn't know? But have thought I may be?

[Tracy99 in reply to SlowDragon]

Just reading up about lactose intolerant, maybe I am, big milk drinker and butter

[SlowDragon Administrator in reply to Tracy99]

Do you know if your hypothyroidism is autoimmune (hashimoto’s)

Have you had thyroid antibodies tested?

High percentage of hashimoto’s patients develop dairy intolerance and/or gluten intolerance

Suggest you try absolutely strictly dairy free diet 3-6 months

It’s much easier these days

So many non dairy milks, spreads etc available

Avoid completely any soya based products

Oat milk good

Plenish brand guaranteed gluten free too

Sunflower spread - Pure brand excellent

[Tracy99 in reply to SlowDragon]

Am going try that from today, I think your right, thank you

[SlowDragon Administrator in reply to Tracy99]

100mcg is low dose for a bloke

How much do you weigh in kilo

Guidelines on dose Levothyroxine is 1.6mcg per kilo per day

[Tracy99 in reply to SlowDragon]

Hi,Am 114 kilos, although have put on weight since being on levo for 18 months

[SlowDragon Administrator in reply to Tracy99]

so highly likely not on high enough dose Levothyroxine

114kg x 1.6mcg suggests you might eventually need something around 180mcg per day

Get FULL thyroid and vitamin testing done

Test early morning, fasting and last dose Levothyroxine 24 hours before test

What were last thyroid results

TSH, Ft4 and FT3

What vitamin supplements are you taking

When were vitamin levels last tested

Aristo currently only available in 100mcg tablets

Assuming you need next 25mcg dose increase after test - request extra 100mcg tablets

Cut into 1/4 to get 25mcg

Use sharp craft scalpel or pill cutter

Mop up any crumbs with damp finger

[Tracy99 in reply to SlowDragon]

I haven't had any testing done for 18 months since my thyroid was diagnosed, was only last week I asked for a thyroid blood test, going this Monday morning, I take B12, D3 and cod liver oil capsules

[SlowDragon Administrator in reply to Tracy99]

Do you take your levothyroxine on empty stomach and then only water for at least an hour after

Vitamin D and cod liver oil at least 4 hours away from levothyroxine

B12 at least 2 hours away from levothyroxine

Request GP test thyroid antibodies as well as TSH, Ft4 and Ft3 plus vitamin D, folate, B12 and ferritin

Thyroid levels should ALWAYS be tested 6-8 weeks after any dose change or brand change in levothyroxine

Is your test at 9am Monday morning

Remember last dose levothyroxine 24 hours before test

[Tracy99 in reply to SlowDragon]

Hi,Silly me I've been taking my levo and vitamins practically all same time, my test is 10 am on Monday, how do I ask the gp or request him/ her for your suggestion, just feel its an insult to tell them 🙃

[SlowDragon Administrator in reply to Tracy99]

Guidelines say all thyroid patients should have thyroid antibodies and vitamins tested

Alternatively, test privately…..thousands of U.K. patients do this

Currently thyroid understanding and treatment is woefully inadequate

Examples of Medichecks results

healthunlocked.com/search/p...

Examples of Blue Horizon results

healthunlocked.com/search/p...

all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

[SlowDragon Administrator in reply to Tracy99]

Silly me I've been taking my levo and vitamins practically all same time,

Suggest you start taking correctly from now onwards

Assuming results on Monday show you need increase in dose

Retest 6-8 weeks after next dose increase

[Tracy99 in reply to SlowDragon]

I will, hopefully an increase will do me good

[SlowDragon Administrator in reply to Tracy99]

come back with new post once you get GP test results

Frequently NHS only test TSH which is completely inadequate

Looking for Ft4 to be at least 69-70% through range

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we need OPTIMAL vitamin D, folate, B12 and ferritin

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Tracy99 in reply to SlowDragon]

You are so informative, can't appreciate enough 👍

[Anthea55 in reply to Tracy99]

It's worth trying other brands of levo.

We are all different. I tried several brands before deciding that the one that works best for me is Teva. This surprised me as many people find it disagrees with them so I expected it to disagree with me as well, but at the time my local chemist had it, so why not try it?

Many pharmacists issue different brands of levo depending upon what they have received from their wholesaler. This can make it difficult sticking to your chosen brand.

You've been given plenty of helpful advice. Do try to only change one thing at a time; then you will know which changes are good and which are not.

All the best.

[Tracy99 in reply to Anthea55]

Thanks Anthea, Problem is I am just given a bag with the levo in, but really happy with yours and everyone's lovely support and guidance, one positive is since I've been on levo I've stopped choking in my sleep, bit of sleep apna? But had it all my life until last 12 months, so strange how a little tablet can work wonders, all I need is my energy back

[Anthea55 in reply to Tracy99]

Tell them that you would like to try a different brand of levo.

[Tracy99 in reply to Anthea55]

I'll speak to the chemist when I collect next time, what brand is best?

[Anthea55 in reply to Tracy99]

I'm afraid there's no such thing as a 'best' brand. What suits me doesn't suit somebody else so we have to try different ones and hope we find our own 'best'.

It's not usually the levothyroxine which differs between brands, but the extras (excipients) which are added to make up the tablets. People who are sensitive to milk products will want to avoid lactose and so on.

The chemist has to provide what is written on the prescription which should have come from the doctor. The doctor may or may not have specified the brand. Good idea to discuss this with the chemist beforehand as he can't change it when you go to collect it. You may have to go back to your doctor.

Many of us find that eating gluten free makes quite a difference to us, but it has to be strictly gluten free.

I'm afraid all this can take time but we get used to that and it's worth it.

[radd]

Tracy99,

Yes, I have suffered mouth issues since starting Levothyroxine. It started as a metallic taste, progressing to a dry mouth, higher than average thirst and sticky saliva.

However, I have since changed thyroid meds to NDT and realise it isn’t the Levothyroxine per se but the up-regulation in metabolism that thyroid hormone replacement meds cause, that has also unregulated some under lying mouth issue.

I was negative for Sjogrens and don’t suffer any other associated symptoms but it might be worth investigating if you have Hashi. Also ensure all nutrients are optimal, particularly Vit B12.

[Tracy99 in reply to radd]

I take B12 but don't feel any benefit? Just tired all the time, although recently undergone radio therapy for prostate cancer

[pennyannie]

Hello Tracy and welcome to the forum :

I notice you also mention eye conditions and have had radiotherapy.

Depending on what and where the radiation was for - could this all be connected ?

Please just ensure if using any eye drops that they are all Preservative Free.

[Tracy99 in reply to pennyannie]

Hi, Recently had radiotherapy for prostate cancer, did have dry eyes for a short while but OK now, just tired all the time, pre prostate diagnosis and after

[pennyannie in reply to Tracy99]

Ok - well fatigue does appear to be a common side effect :

Hopefully your doctor is running a full thyroid panel to include a TSH, Free T3 and Free T4 plus antibodies, inflammation and ferritin, folate, B12 and vitamin D and then if you care to share the results and ranges we can help and advise on your ' thyroid ' treatment.

If this isn't the case you can organise this through one of the private companies as detailed on the Thyroid UK website - thyroiduk.org - which is the charity that supports this forum.

Between them - I think Medichecks and Blue Horizon cover the country offering a nurse home visit to draw the blood for you - if this suits you better - and yes, at a surcharge :

We generally advise an early as possible morning blood test appointment and if taking any supplements leave these off for around a week beforehand so we can see exactly what your body is holding.

T4 - Levothyroxine should be taken on an empty stomach and you need to wait around an hour before eating or drinking anything other than water.

On the day of the blood test- if your normal routine is to take the T4 first thing in the morning - delay taking the T4 until after the blood test - as again we need to see what your body is holding :

When with the results and ranges simply start a new post with all the information and we can talk you through what it all means and give considered opinion as to your next step back to better thyroid health.

[Tracy99 in reply to pennyannie]

Thank you I will certainly go that road, don't have any test results after my thyroid blood test so wouldn't have a clue

[pennyannie in reply to Tracy99]

Just another thought - when diagnosed hypothyroid was there a reason given -

were you with antibodies and told you have Hashimoto's - an Auto Immune thyroid disease ?

This can also present with dry, scratchy, watering, and light sensitive eyes - and all part of the same issue ?

thyroidpharmacist.com ??

[Tracy99 in reply to pennyannie]

I was going to see my gp generally feeling tired all of the time, although I work night shifts I was told most of the time it was my working nights and even one occasion the gp said statically people who work permanent nights do tend to have sleep disorders, it wasn't much info for me, that was 4 years ago, another gp i saw 18 months ago gave me a thyroid blood test and hence was positive low!! Since taking the tabs I feel they not doing anything, but now confused as this prostate cancer stage 2 after radio therapy, hot sweats day and night along with not sleeping enough hours and very tired! Am still not sure what the answer is

[pennyannie in reply to Tracy99]

OK - well - once with the full thyroid panel results/ranges we can try and sort out this section of your health and since the thyroid plays a massive role in every aspect of one's life it might be the key to all that is going on.

[Tracy99 in reply to pennyannie]

Thank you, I'd love to get to the bottom of it, my mind is telling me I should be full of energy but feel so tired, don't have a problem galling asleep but wake up after 2 hours, probably get about 5 hours on a good night, am going back to work next week after my prostate radio therapy, just worried my energy levels

[pennyannie in reply to Tracy99]

Can you be " phased back in " and start off on shorter hours -

You don't sound fit enough to be able to work effectively for a 40 hour week -

If nothing else next Monday - get the doctor to sign you off work :

[Tracy99 in reply to pennyannie]

It's been agreed I work 2 on four off until December when I hopefully receive my prostate results

[Tracy99]

Thank you very much for your information, I will look into having test done elsewhere as not very confident with my health centre

[pennyannie in reply to Tracy99]

Well - you might be lucky - though the vast majority of us on this forum need to pay to get the relevant bloods run.

If you do use a private company it's generally around 10 blood analysis and marketed as a ' Thyroid Extra ' or a ' Thyroid Bundle ' - arrange an appointment for a Monday or Tuesday so the sample is in good time to be processed and your results back by the Friday.

[Tracy99]

Thank you 😊