Recently it came to my notice that the levothyroxine that I currently take for hypothyroidism contains mannitol..a type of sugar I believe ?
As I also have restless legs and periodic limb movements disorder.. I do believe that the two might be connected,and that the mannitol could be affecting the restless legs which are very involuntary jerky for hours at night….so requested from the pharmacist for a different form of levothyroxine.
After about 2 weeks they found a new prescription made by North Star instead of Teva ..
The dose is same 75 mg but with the North Star tablets it’s 25+50 mg
2 tablets instead of one.
Hopefully the restless legs might be better while on these new tablets for hypothyroidism..
Any comments would be interesting
Thank you.
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janland
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Jan unfortunately the 25mcg tablets of Northstar are manufactured by Teva.
You might have to get the gp to prescribe only 50mcg tablets and split them to get 75mcg daily. Or take a 100mcg tablet or 2x50mcg 1 day and 50mcg the next.
I did notice that the smaller ones were Teva again and contain mannitol ..
The pharmacist said initially that any amounts of mannitol in the levothyroxine would be minuscule and I think she thought I was making a fuss but if I could eliminate anything that might be causing restless legs and sleep deprivation it’s worth a try ?
Your ideas of splitting the tablets is a good one thank you for that …
The pharmacist can claim anything - but could they actually tell you how much mannitol the tablets contain? Could she even tell how much the whole tablet weighs?
yes that’s what I thought .. She also said she had restless legs from time to time when I mentioned mine is chronic for 20+ years and getting worse .!
However I didn’t want to argue with her about the amount of mannitol in the tablets and was near to tears when she was trying to fob me off by saying the minuscule amount etc.. I find everything is a battle at the doctors surgery .. She said tablets are in short supply because of the distributors .. carriers bringing them in to surgery .. then she said she doubts very much if any other brand can be found without mannitol etc .. and I at last got a couple of packs but with the smaller tablets still containing mannitol and on both packs it’s printed only to be taken 5 days a week !!
So I now must ring up and ask why ?
Thank you for understanding and taking an interest it’s it’s so reassuring and helpful .
It's very frustrating that pharmacists do not realise that 25 microgram Northstar levothyroxine is Teva product - and contains mannitol.
Northstar is a own-label supplier owned by the same group as own Lloyds pharmacies and the AAH distributor. If you are getting this issue at a Lloyds, it might be worth asking other pharmacies.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)
Hi again and thank you for your comprehensive reply ..
I think I really need to get private blood tests as not getting anywhere with gps..
I have blood tests quite a lot during one year due to my low platelets but as they are improving the blood is only taken about 4 times a year now unless I complain again re restless legs.
So last results from September blood test was..as below..
I have been given 50 mcg of levothyroxine..no mannitol “accord” and
25mcg levothyroxine with mannitol Teva North Star.
Both only to be taken 5 days a week ?
Not sure why .
I’m 50 kilos in weight..active and female retired..
So serum TSh is 1.2 ..
Doctor rang me to talk about results and said everything normal and my vit D a year ago was normal ..
So ferritin wasn’t tested or vitamins or FT4 nor FT3.
I do think hypothyroidism and restless legs are connected ..in fact levothyroxine I believe can cause restlessness and insomnia both of which I have ..
Just lately I’m thinking maybe lower spine might have something to do with restless and jerky kicking jumpy legs ?
Posture or sitting in evenings or not stretched enough ..just a theory .
Thank you for all the links for blood tests especially the discount one as I can’t really afford.. but to get to the bottom of the cause I think I must ..
Please let me know if you have any other advice about my case as I’m quite in despair re not sleeping properly and having to get up several times a night ..
I have been given 50 mcg of levothyroxine..no mannitol “accord” and 25mcg levothyroxine with mannitol Teva North Star.Both only to be taken 5 days a week ?
That’s almost certainly not correct …..ludicrous idea to not take any levothyroxine 2 days a week
Perhaps GP meant 50mcg 2 days week and 75mcg 5 days a week
Guidelines on dose levothyroxine by weight suggests you are likely to need approx 1.6mcg levothyroxine per kilo of your weight per day
That’s approx 80mcg levothyroxine per day every day
Obviously you need to get rid of 25mcg Teva brand
Change for either more 50mcg tablets of Accord and cut in half to get 25mcg
Or try 25mcg Mercury Pharma brand (often listed as Advanz) or 25mcg working
Meanwhile try taking 50mcg 2 x week and 75mcg
Retest full thyroid and vitamin levels 6-8 weeks after any dose change or brand change in levothyroxine
Always test thyroid levels early morning, test day after a 50mcg dose dose…..and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking
Request GP test vitamin D, folate and B12 and ferritin ….if they won’t ….test via Medichecks or Blue horizon once a year
Low GFR linked to being under medicated thyroid wise
Very interesting what you have said about weight of person and dose in my case 80 mcg at least per day .
Also I’m going to ask why it’s only 5 days a week for both tablets ?
That’s strange ..
It would only amount to 375 mcg instead of 525 mcg as you suggested or if it were 80 mcg a day it would be 560mcg..
Definitely need to ask doctor or pharmacist again .
No I won’t use the Teva brand again
I’ll take it back to pharmacy tomorrow .and change for 50 mcg or ask for the other brand you suggest mercury pharma Advanz.
Not taking any vitamins at moment apart from omega 3 and lions mane mushroom and plant sterols .
It looks as though I’ll have to get private bloods done for Vit D ,folate, b12 and ferritin (and thyroid again after 6 weeks .)
The information re : GFR is very interesting too so it could be that I’m not taking enough levothyroxine ?
and that this condition could be reversed .
I’ve often thought maybe people with hypothyroidism don’t or haven’t had enough iodine in their lives perhaps causing this in the first place .. so occasionally I sprinkle sea weed salt on my food ..
However once again I thank you and now need to put all this into action .
You have all my sympathies....I only had 2.5hrs sleep again last night....a real problem!! I have Teva 25mcg but not taken them they made my son really ill. My son gives me some of his Accord 50s to cut in half....and I have just moved so new GP & pharmacy and my levo 100mcg are a name Id not heard before ALMUS...but on line it looks as if they are made by the Accord company...so I HOPE they don't make me feel worse as I feel dreadful...brain fog etc!!
I live in France and there were major issues when Merck changed the formula of their Levothyrox tablets and included mannitol. Many people, but certainly not all, started suffering from different symptoms. I changed brand to L-Thyroxine Henning and my symptoms improved. Lots of people changed brand.
I don’t know why this Teva is still being given out it seems a lot more patients becoming ill on it Than there is well on it yet MHRA say they only had over 300 yellow cards put in for it this is rubbish I want a MP to raise this in parliament have been fighting since 2018 about this just now you can’t seem to get to see a MP what’s going on.
Some find it the best of all available levothyroxine tablets.
This sort of issue can apply to many ingredients. At least those who are unable to tolerate lactose got the option for a lactose-free tablet (that has UK marketing authorisation).
It is difficult because if all products move to a nearly identical formulation, it becomes more difficult to avoid ingredients which are in all or most products.
I think we need the choice to avoid makes/excipients and for that choice to be supported by the prescribing and dispensing systems.
Unfortunately, while some members here have clearly shown they put in Yellow Cards, I suspect an awful lot don't despite finding issues. (Some members have posted that Yellow Card reports have been difficult or time-taking. They might have done that one report but imply they won't do any more.)
I have heard that mannitol slows down absorption don’t know if this is right but in 2018 I became very ill when pharmacist gave me Teva in place of my MP brand went to GP three times in seven weeks she kept saying it was my age she wouldn’t listen to me ended up having heart attack my daughter had the same problem with Teva she went to a different GP he did listen to her and said it’s the government to blame GPS don’t seem to know how dangerous this can be especially in elderly it looks to me as if wee were not absorbing any of this Teva something should be done for GPS to be more educated on thyroid problems.
There’s queues for everything these days as all systems seem to be clogged but if you write mp again and if other people do plus the yellow card.. perhaps we will be noticed .
Hi. I read your comment on L-thyroxine-Henning, and I was wondering if you could please tell me why you found it impressive. I'm in the US, and I've never heard of L-thyroxine-Henning before. I've struggled terribly with the thyroid meds we have here, since Synthroid changed formula, long ago. So, I'm always curious about different thyroid drugs in other countries. I guess I'm always looking for something that maybe could help me better, in case I could ever get it over here.
I did look it up as best I could, and it says it's made by Sanofi. I've heard of the company, but I wasn't aware they made thyroid medicine. Thanks for any info.
Some makes produce a noticeable effect quite quickly after taking them. Not a big effect, but something. And these makes seem to leave me wanting my next dose before it is due.
Other makes have had effects such as uncomfortable stomach, or a feeling that they are not delivering the full claimed dose.
With L-Thyroxin Henning, I just took them and never felt anything except properly dosed.
It was years ago now, and maybe my opinion would have shifted? I don't do badly and get the effects some have. But it just seemed right for me.
Sanofi is gigantic. They also produce Thybon Henning (in Germany) and Sanofi Cynomel (in France) - which are liothyronine products,
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. It is sectioned by UK - rest of the world, and by T4, T3, desiccated thyroid, etc.
And do keep up to date. I edit it frequently- sometimes trivially, sometimes extensively. If your copy is more than a few weeks old, please download it again. (You must download - not just view in a browser- for the Table of Contents to work.)
Thank you for responding, and I'm sorry it took me a bit long to reply back. I've just been having a really hard time with my thyroid meds (as usual), so I fall behind on everything. My apologies for that.
I know what you mean, about being able to take a certain brand's thyroid pill, and it just seems like it's doing what it's supposed to. That's what I had with the Old Synthroid formulation, and I haven't had that feeling, since. And you're right; for some of us, anyway, these meds can start to have an effect quickly, for better or worse...within days, even with T-4 meds (which supposedly take longer to build up than T3).
And you're also right, too, that since you took the L-Thyroxin Henning years ago, we can't be sure you'd respond to it the same way, now. But you might...who knows? I've gotten that argument thrown in my face a lot by people who say, "Well, Old Synthroid helped you long ago. Even if you had it now, how do you know it'd still help you?" It's true, I don't know...but I still wish I had the chance to use it again, and try.
Your medicine list is impressive...I did look through it, and I'll come back to it again, when I have a better attention span. That's a lot of work to put something like that together, and you deserve MUCH credit for doing so. I wish the medical communities and governments would make it easier for patients to try thyroid drugs from other countries, especially when the patient clearly isn't doing well with what's available to them.
Even when I get a doctor who understands my situation, it's very frustrating, because we just keep going 'round and 'round with the same drugs that don't work. I stay on one (or a combination of them) until I just can't tolerate it anymore due to whatever bad-side effects that won't quit (no matter the dose), and then the doctor switches me to something else for awhile that failed me previously, and we just start the whole cycle again. It's just insane & unfair. No wonder I'm working on a thyroid petition for better treatment, right? Anyway, thank you again, for your kind and informative response. I really appreciate it.
I used to have only 12.5mcg Teva added to my dose to complement it and after having terrible side effects, I came across the situation in France with Euthyrox (Merck). Thanks to that I was sure mannitol caused me serious symptoms and I stopped it. I then got a prescription from my GP of the brand Eltroxin. I'm sure they have 100mcg, 50mcg and 25mcg. You could try persuading your GP. I was always told by my endocrinologist to never cut levothyroxine as it's micrograms and you'll never get it completely right.
as far as I know Merck had the same excipients as Teva don’t think you will be sued as far as I know a lawyer is still fighting the government about the people who became ill some patients died and after what happened to a lot of people in the UK with Teva the government did not put out the relevant info to health professionals but of course Teva is a cheaper brand that’s the only reason I can see they put this on the market now you won’t get the full dose of Teva they will give you 50 Teva and 25 of another brand there has got to be a reason why they are mixing brands as for years I got 50 MP and 25 MP what is going on.
I can relate to the patients in France who had trouble when Merck's formula was changed. I'm in the US, and when I was in college in 1982-83, the manufacturer of Synthroid also changed around the "inactive" ingredients, which hurt some of terribly--including my late mom and me. They didn't generally tell patients about the changes, so those of us who got affected badly didn't even know for a long time what had caused it. (We didn't have the Internet to compare notes, etc.). I've never been able to find a thyroid drug to help me well, since. I'm glad the L-Thyroxine Henning helped you. I'm looking into it, in case it ever makes it over to the United States. Thanks for your post....it was helpful to me.
I do think hypothyroidism and restless legs are connected ..in fact levothyroxine I believe can cause restlessness and insomnia both of which I have ..
There are quite a few things that can increase the risk of restless legs, cramp, twitching, or spasm of muscles. Some of the commonest causes are low vitamins and minerals.
Things which helped me to eliminate cramping were :
Magnesium (Mg) supplements : Low magnesium is incredibly common in the population as a whole. As long as your kidneys are in moderately good health (to get rid of excess Mg if you take too much) then you are likely to be safe when supplementing. Blood tests for Mg aren't reliable, so I would suggest just trying it and see if it helps. Mg can be taken internally or externally (sprayed on the skin or put into the bath as a soak, or taking powdered Mg in water or orange juice or taking pills). For help on choosing a supplement google for "best and worst forms of magnesium" and see which ones appeal to you.
Magnesium can make some people a little bit sleepy so take it an hour before bed.
Iron supplements : Iron should only be supplemented after thorough testing shows it is necessary. Supplementing iron without a good reason is a very bad idea. You can ask your doctor to test your iron levels for you, but they usually only test ferritin (iron stores) which doesn't tell you enough. If you want to do private testing then you could order this finger-prick test from Medichecks, and once you have the results you could post them and ask for feedback.
If you want more help with ordering private tests without a doctor, then just ask.
Vitamin D : Low vitamin D is a classic cause of muscle and joint pain. Your doctor might test this for you if you ask, but it is an expensive test by NHS standards and the chances of getting fobbed off are high. There are private tests for vitamin D available with finger-prick samples, if you can't get your doctor to test.
Potassium : Low potassium can cause cramping and twitching, however, supplementing without need can cause problems with the heart rhythm, so this has to be a last resort. Some types of potassium supplements are also an irritant in the gut. I would suggest only considering this option if you've tried everything else and nothing has worked.
Sodium : Many people are told by doctors to minimise their salt intake. Salt provides both sodium and chloride, both of which are electrolyes and both are important for good health. If you have reduced your salt intake you might want to increase it slightly to see if it helps.
Calcium : I'm not positive about this but low calcium might cause cramps and restless legs as well. You can test this by drinking a small glass of milk before bed to see if it helps.
If this doesn't help within a week I would suggest stopping it. Having too much calcium in the body is NOT a good idea.
...
You might find this info on electrolytes of interest - follow the links it contains.
thank you once again for all the information you have sent to me ..
I shall look at all those links for magnesium and potassium and private blood tests which I think now I need to do as gps don’t seem to do the relevant ones ?
Along the lines of other factors to consider above from human bean it’s worth mentioning white wine, champagne and prosecco do this to my legs. Absolutely horrendous. I stopped drinking them nearly 20 years ago, even a few sips at a wedding is enough to set me off. I’m almost teetotal, have a thimbleful of expensive Portuguese Douro red occasionally but can’t tolerate more. Hope you find your answers, I’m the opposite, Accord was awful for me, so much gurgling popping and fizzing in my gut, Teva is much better for me. We all have to go with what works and pharmacists and GPS really don’t get it. Sending my best to you 🦋💚🦋
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