levothyroxine/Teva/mannitol : hi everyone.. It’s... - Thyroid UK

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levothyroxine/Teva/mannitol

janland profile image
18 Replies

hi everyone..

It’s just come to my notice that Levothyroxine which I’ve been taking for about 25 years or so contains “mannitol “

As I have very bad restless legs for about the same amount of years and getting worse …

I was wondering how long mannitol has been in levothyroxine ?

Also.. would it affect restless legs/periodic limb movements at night .?

I think there’s a connection with the circadian rhythm of both these diseases but I’m also noticing that I need the loo more and more each night more frequent ruination which also breaks sleep…

Perhaps mannitol is causing this extra urination ?

Also how much mannitol is in the levothyroxine now ..?

I also suffer with anxiety and lightheaded ness and dizziness sometimes when out shopping or wherever ..

If anyone can shed some light on this be gratefully

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janland
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18 Replies
helvella profile image
helvellaAdministrator

Teva levothyroxine, the only UK levothyroxine product which contains mannitol was launched - emblazoned New Formulation - in 2016.

(The Product Assessment Report is dated October 2016: mhraproducts4853.blob.core.... )

The previous Teva levothyroxine product was taken off the market in 2012 due to failing to deliver its claimed potency.

Hence there was no Teva levothyroxine tablet available for over three years.

I don't think we can know the amount of mannitol. More recent product documents state the amount of lactose present in them (if any). Mannitol was used as a direct replacement for lactose. So a broadly similar amount seems likely. One current tablet contains 31.88 milligrams of lactose so I would guess somewhere between 20 and 50 milligrams of mannitol but I do NOT know. Contact Teva and ask.

Spreadsheet history of Teva levothyroxine
janland profile image
janland in reply tohelvella

thank you for all that . Very interesting it is .

I didn’t know the facts about levothyroxine although I have been just taking it without question or scrutinising the package for all those years .

I’m currently waiting for blood results (yet again) which I think will include thyroid levels and vitamins and iron etc .. doctor is trying to get to the bottom of restless legs syndrome and periodic limbs movements disorder which is quite severe these days or rather nights and getting worse ..

So it looks and sounds as though the mannitol is very minute in the tablets and probably won’t cause any problems .

Thank you

helvella profile image
helvellaAdministrator in reply tojanland

The amount of mannitol is small - but we have had consistent reports from members who have felt side effects/adverse reactions to Teva with mannitol. And there were similar reports in connection to the change of Merck Euthyrol to mannitol.

Jaydee1507 profile image
Jaydee1507Administrator

Did you ever get your key vitamins tested? Ferritin, folate, B12 and D3? You could help yourself a lot by doing this and raising their levels.

janland profile image
janland in reply toJaydee1507

hi

Thank you very much for your reply .

Yes recently had bloods and waiting results next week . Full blood count so I think thyroid iron and vitamins .

I have stopped all supplements for couple of weeks just to reach base line .

If any of the above vitamins and minerals are low it could be a key to whats wrong .

Hi

Have you always taken Teva for 25 years? Do you have any recent thyroid blood results to share? There are lots of other reasons for your symptoms, undermedication, over medication, peri or full menopause, low ferritin or other nutrient deficiencies.

Side effects from other medications can lead to light headedness or dizziness. Plus just getting a bit older can mean needing the loo at night. I get up each night without fail for a wee. Its a nuisance but very common.

janland profile image
janland in reply toSparklingsunshine

hi ..

I’ve been taking levothyroxine for many years always looking like the same package but never really noticed the word TEVA on the box before .

I’m currently waiting for results but then I’m never given the detailed results

Usually just told by receptionist that “it’s normal “

I would like to know re the TSH and T3 and T4 aspects of it .

Only other medication was for high blood pressure which I’ve stopped recently

Amlodipine 2.5 mg

I’ve stopped all my own supplements except probiotics..

So whatever causes the restless legs and periodic limb movements disorder which is quite severe these days and which seems to coincide with full bladder 4 times a night and circadian rhythm of the thyroid hormone which makes me think it could be connected .?

Or I think the latest discovery is a malfunction of the way the brain processes iron and or ferritin and dopamine ?

It would be good to find the cause..

Hopefully I’ll be able to tell this forum the blood results very soon .

I so much appreciate all your help and advice .

Thank you

Sparklingsunshine profile image
Sparklingsunshine in reply tojanland

Hi

Dont rely on the surgery to give you your results, telling a patient they are fine means nothing. Thyroid blood ranges in the uk are very wide so whilst you might be in range, you probably wont be optimal. Many surgeries now allow you to register for online access for test results, failing that request your surgery issues you with a paper copy from reception. Say you want it for your records. You are legally entitled to them.

janland profile image
janland in reply toSparklingsunshine

thank you for that .

I have requested paper blood results back in the past and they look at me strangely and say

Don’t know about that it’s not normally asked for ..and begrudgingly say I’ll have to pay for the paper ..

When I go to collect it’s very basic nothing detailed.

It’s as if I’m out of the ordinary asking for something like that and “what do you want it for “..

So

I’ll try again ..

Thank you

Sparklingsunshine profile image
Sparklingsunshine in reply tojanland

HI

Ive never heard of someone having to pay just for test results.

janland profile image
janland in reply toSparklingsunshine

they ask me to pay for the paper it’s printed on ..

The details are in different format each time .?

I study them but the thyroid doesn’t say about t3 or T4 etc .. I’ll try to send a photo of my next results on here which I’m expecting next week . Thank you again .

helvella profile image
helvellaAdministrator in reply tojanland

In the UK, it is illegal to charge just for a print of your information.

However, this only became so in (if I remember correctly) 2018.

Prior to that, it was not uncommon for patients to be charged up to £10 for a single sheet of paper.

Sparklingsunshine profile image
Sparklingsunshine in reply tojanland

Hi

Many NHS thyroid tests don't include FT3 or FT4. Its often TSH only. I recently had a NHS thyroid panel in June and they did test everything, felt like I'd won the lottery lol. Many of us pay privately for thyroid testing. TSH is a terrible way of determining thyroid status but its one that many GP's use.

Charlie-Farley profile image
Charlie-Farley

Hi Janland

I have suffered with restless legs in the past with other medication- in fact it was trazadone when I was struggling to sleep and caring for two parents (with help of hubby). One parent with Alzheimer’s and one bedridden with vascular dementia - yep that will do it - looking back, I’m amazed I got any sleep at all 😱.

I’ve also noticed if I don’t drink enough that can set me off. I’m on Teva (to avoid lactose) and I guess I’m one of the lucky ones as I have no apparent side effects. I keep my vitamin levels up as per forum advice and I’m on an optimal dose of Levothyroxine. For me that is 150 µg of levothyroxine and I am 14 1/2 stone. I’ve lost just over half a stone since I started taking Levothyroxine and if I need to, I may reduce slightly if I lose more weight, but at the moment I feel fine and I’m in range. Note how I feel comes FIRST! Symptoms or lack there of are the most important guide - if only our GPs knew this. Militant hypo at your service! 🤣👍

janland profile image
janland in reply toCharlie-Farley

hi

Thank you for your reply ..

Very interesting ..

So do you think not drinking enough water makes restless legs worse or stress in general does .

I’m hoping now that docs will know what’s causing all this . I was infertile for many years and I think in those days it wasn’t discovered that thyroid trouble can cause it .

Best wishes

Charlie-Farley profile image
Charlie-Farley in reply tojanland

Hi Janland

For me, being dehydrated definitely a factor and I’m pretty sure there may be links to a vitamin deficiency - but the worst for me was the trazadone medication. I could have done river dance, I was twitching and jerking that much 😱 latterly I’ve found sitting long periods can be problematic.

You know it can be more than one thing working together- I try to tackle on all fronts and now if I have been slouching around on our soft sofa too long and not drinking enough during day I eventually give up and go bed just to lay down and relieve the restless legs. Put some shakra cleansing music and relax (lovely!) 🤗

Truly hope you find your trigger/s and get sorted 😊👍

janland profile image
janland in reply toCharlie-Farley

thank you.

SlowDragon profile image
SlowDragonAdministrator

Have you got your test results now ?

Restless legs is frequently either

Low magnesium and/or low iron/ferritin

Request GP do full iron panel test for anaemia including ferritin because no one should supplement iron without getting full iron panel

What vitamin supplements are you currently taking

Presumably you are supplementing vitamin D?

How much

Essential to test vitamin D twice year when supplementing

Aiming for at least around 80nmol minimum

When supplementing vitamin D we also need magnesium

Magnesium, test is not worth doing.

Many/most hypothyroid people on levothyroxine find adding magnesium supplement is beneficial

Any magnesium supplements must be minimum four hours away from levothyroxine

Magnesium best taken afternoon or evening as is relaxing and helps improve sleep

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium 

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

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