Hi I now have liquid levothyroxine. Can anyone advice me as to whether you can mix it with water, as its making my mouth very dry, I do drink water after I have swallowed the liquid.
Liquid levothyroxine : Hi I now have liquid... - Thyroid UK
Liquid levothyroxine
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Harlech
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helvellaAdministratorThyroid UK
If I were you, I would do two things:
Contact the manufacturer and ask them.
Put in a Yellow Card report for the dryness issue you are having.
Hi what brand do you take?Apart from your dry mouth how are you finding it?
Ive been taking liquid thyroxine for a few months. Its caused me to gain weight and just been told by consultant to increase dosage to 9 ml per day instead of 6.5. Trouble is when i increase it i get palpations.
Im going private armed with my latest blood tests and im praying he can sort me out, just want the truth re T3 which has so far gone on deaf ears.
Trouble is when i increase it i get palpations.
Have you tried splitting dose….taking half in morning and half at night
Many people, especially if on liquid levothyroxine, find splitting dose is easier to tolerate dose increase
I will try that. Morning one as usual before any food or drink but when do you take evening dose, before dinner or bedtime?
Bedtime
Can help improve sleep
Thank you i'll start in the morning
Hi.I have only resently started the liquid, the problem I have had is the dry mouth, today my lips were sticking to my teeth, ( 1 way to stop me talking😀) my dosage is 5ml brand zentiva.
Yes i was on Zentiva. I put on weight so now on Mercury Pharma. It could be that my dosage wasnt high enough that caused the weight. 5ml is low. My consultant has told me to increase to 9ml but i get palpations on higher dose. Do you find Zentiva ok apart from dry mouth, weight?
I will need to take the liquid for a few more weeks to see how things work out.
Do you find the mercury brand better.?
Im not sure yet im still on my first bottle. Since on liquid my eyesight has improved and i dont have any palpitations so thats a result but i have put on weight all around my stomach and hips something thats happened only since the liquid. Its very uncomfortable and doesnt feel normal, ive started to have a heavy achey feeling in the bottom of my stomach.I shall discuss this with my consultant on friday.
Yes it takes a while to settle down.I asked for a brand that wasnt sugar free as i read that sugar free contains mannitol in it which apparently isnt good so thats why i was given Zentiva and Mercury Pharma whether thats why im putting on all this weight around my midriff im not sure. Its all a guessing game isnt it.
I think all the UK makes are sugar-free!
They are all based on glycerol which is itself sweet and is significantly calorific. (And water.)
I haven't checked every single one just now, but I am sure none contain mannitol.
This paper has details about the calories in substances like glycerol:
“Low-Carbohydrate” Food Facts and Fallacies
Janine Freeman, RD, LD, CDE and Charlotte Hayes, MMSc, MS, RD, LD, CDE
Diabetes Spectrum 2004 Jul; 17(3): 137-140. doi.org/10.2337/diaspect.17...
I think it was Teva that had the mannitol in it. Gaining weight and feeling so heavy is really getting to me.
Horrible feeling.
Teva tablets contain mannitol. Their levothyroxine oral solution has the same ingredients as the others - even made by the same company as at least one other product (Delpharm).
Ingredients list for Teva levothyroxine oral solution
So it must be the glycerol thats causing my weight gain.
Well, if it is the medicine, that is the only ingredient which has significant calorific content. The other excipients (aside from water, of course) are totally ignorable.
I wonder if there's a brand that doesnt contain glycerol
No - there isn't. All currently licensed UK thyroid hormone medicines are listed in my medicines document. Tablet, oral solution, hard capsule.
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.
From Dropbox:
dropbox.com/s/shcwdwpedzr93...
From Google Drive:
I take liquid Levothyroxine. I’ve tried a few brands. I prefer Wockhardt brand. I’ve asked my GP to put Wockhardt only on my prescription and now I always get the same Wockhardt brand. I’ve not had any problems with a dry mouth at all. Wockhardt is tasteless and has no colourants or sugars in it. Also the bung works well when you place the syringe to draw out the required amount. I found some bungs were useless.
Every pharmacist i have spoken to chains and independent chemists have said they do not have to get the brand thats stipulated on my prescription. Its whatever their supplier sends them thats what you get. I have asked for Wockharte but as soon as they see the price of it they say they can't get it. The brand they first gave me was Teva im sure it had sugar free on the box that it had mannitol in it i had read that it wasnt good to be taking it in liquid thyroxine. Ive just read another members comment that she didnt get on with liquid and now takes Aristo brand tablets. My consultant recommended them to me but not one chemist could order them.Its such a crazy situation.
I must be fortunate then as my GP and the medication manager at my surgery agreed I can have one brand stipulated on my repeat prescription for liquid Levothyroxine, which is Wockhardt. My local pharmacy at first said they could only get what their supplier gets and Wockhardt wasn’t one of them. What I did was telephone Wockhardt customer services in Wrexham. I asked them how I could get their product to my local pharmacy. They said they’d deliver free of charge to my local pharmacy and all the pharmacist needed to do was telephone them. So I gave this information to my local pharmacist. Now, well for some time now, I always get my Wockhardt brand. It’s important for some thyroid patients to maintain the same brand in medications I explained this to the pharmacist. I also told her that if she could not make the regular call to Wockhardt on my behalf that I would have no alternative but to report the pharmacy to my GP practice and my very senior Endocrinologist. All pharmacies should try to support the patient.
It’s worked like clockwork now.
Hi Pammy
I rang Roseway Laboratories to see when i would receive my prescription for ThyBon Henning lio 100 tablets. Its been a week since i paid. I was told i wouldnt receive my order until at least the 4th January and even later if they havent received a delivery.
Said they were having trouble getting the 100 tablets. They had 50 tablets but i still wouldnt get them until after the 4th January and i would have to get a new prescription to them if i want them.
Have you heard if theres a problem with supplies?
Hi,That’s not good is it. I’ve not heard of any supply issue myself. I’ve not had to use Roseway yet as I managed to get x3 prescriptions off our Endo prior to Brexit. I ordered 600 tablets that has lasted me all this year, next year and into 2023. I was a supply chain manager and thought we might have an issue getting stuff from Germany. Unfortunately I was right. Hallelujah though that Roseway saw an opportunity to supply to U.K. patients. Even though it’s twice the price as previously from Germany, who cares it’s about getting it.
Maybe the supply shortage is due to Christmas being upon us and Omicron now sweeping through at lightening speed in the U.K. and Europe. Probably Roseway will be shut for a few days over Christmas and New Year too.
Yes thats why they said even if i wanted the 50 Thybon Henning lio they would need a new prescription and even then i wouldnt get it before the 4th January. Apparently its the MRHA governing body waiting for approval to import. I think seeing that its my first time on lio i will wait until the 4th and get update then.
Does this often happen?
Valerie is trying to make a follow up appointment with me in January but theres no point if i havent been able to get my lio. I'll send her an email. I thought great im finally getting somewhere and now this! Can Valerie send my prescription to another supplier or doesnt it work like that? Would she be able to help? Valerie sent my prescription directly to Roseway when you say you haven't had to use Roseway yet and got 3 prescriptions from our endo what did you do then?
Valerie emailed your prescriptions directly to you???
You just request a prescription when you need one. Each time though you need to provide an up to date full thyroid test result to the Secretary. I get mine done every 3 months no matter what so I always have a result to email across. I’d leave it now until your tablets arrive from Roseway. It’ll only cause more messing around to try and change things. And things could get messy. Keep it simple to keep things clear and moving forward. Get your next appointment end of January you’ll only need 3/4 weeks on T3 to know the difference.
Why are you on the liquid? I was in it once and found it harder to stabilise my thyroid and my results were never as optimal. It personally made me feel sick as it’s quite intense stuff on an empty stomach. I never found a brand any better than the other. I now take Aristo tablets less fillers and no dairy.
My hospital consultant recommended Aristo tablets before i started the liquid but not one chemist knew if them. Since being on the liquid my TSH has shot up my T3 still low but cant get any doctor consultant to listen to me all they look at is the tsh result. Im praying i get somewhere with the private consultant im seeing in December.
I’m in South Yorkshire and get Aristo from a local chemist who managed to get some. But I mainly get them from the local hospital via my endo. I can message you details? Aristo really helped me, I feel ok in it and TSH ok. They only come in 100 mcg and I can cut them to quarters easily.
Yes please thank you. My consultant that im under at the hospital recommended Aristo and to ask my gp to put Aristo on my prescription. After she told me i went straight to the hospital pharmacy to speak to the pharmacist. He had never heard of them so no help.I rang round so many chemists and no one had heard of them.
Its so frustrating
Hi You mentioned that you take Aristo levo tablets and that you could pass on their details to me.
Would you be kind enough to do that for me. I did try once when my consultant mentioned the brand but i tried lots of pharmacist's and no one had heard of them. I also went to the pharmacy in the hospital after my appointment who also said they hadnt heard of them.
Ive been on liquid levo for about four months now but im still nit convinced its right for me.
I did try it. I had a problem with getting a continuity of brand. I tried talking to the doctor and the pharmacy but was told it was impossible as it was a case of supply. I gained weight and the palpitations were frightening so I reduced the dose, kept reducing and trying splitting etc. Nothing seemed to work. Came off it and actually feel better. I just take T3 now
Im sure whatever T4 im on being tablet or liquid just dont agree with me never have. Im sure i would feel better on T3 only. How do i go about it. My nhs consultant wont listen to me when i suggest having a small amount of T3 ive got no chance. What do most people do, fund it themselves?
Yes it is very challenging. I did eventually get my Endo to prescribe T3...... This was after 20 years . Again, I had the same problem with different brands given to me with different ingredients. I was all over the place.I've now gone back to buying T3 online and use the same pharmacy each time, so it's the same product and I feel half normal again. For me it's been a lesson in finding a way to feel better despite the medics and sorting myself out. Good luck with your journey
Thank you so much.Even though im seeing my nhs consultant on friday and a private consultant on the 8th i can't help but think im not going to get anywhere with either.
Wish i could be more positive.
I wouldnt know where to start sourcing my own T3 and what brand im sure i will get lots of help here if it comes to that.
Im worried about funding it, i retired in October so only receive my state pension.
Do you have private blood tests to monitor your tsh T3 and T4? Or does your gp do them, i can never get my gp to test my T3 only the hospital when i have my yearly check up.
Yes I am also retired but find that it's not too expensive. I have been to private doctors in the past, worked my way through 4NHS hospital endos, all of whom didn't help at all. Been repeatedly told to take masses of meds when they just polaxed me. That advice was driven by my TSH testing...... as they are reluctant to test anything else like (T3/4)in my experience. I have done private Testing annually but now tend to only do it if I feel unwell or think there's a problem .I got advice from a link to this website...... Contact admin about where to get T3 plus a list of all ingredients. It is a bit trial and error but just keep going. I know how dispiriting it can be
My nhs Endo has increased my daily dose from 62.5 to 90 liquid levo because my latest blood test result showed that my tsh had gone up to 7 from 0.7. The timing looks like its the change over to liquid thats caused it to increase.Im starting to get symptoms again since change. On paper i am undermedicated but at least i was starting to feel better on liquid my eyes stopped being blurry my hair in good condition no aches no tingling in my fingers no palpatations but unfortunately what i do have is weight gain which is very uncomfortable heaviness bottom of stomach. Ive been on the increase for a week now and already starting to get some of the above symptoms.
I am a poor converter the more T4 i take doesnt make any difference to my T3 that has always been low surely because of that i need T3 instead of more T4. More T4 just gives me more smpytoms.
Thats the question im going to be asking at my appointments.
I know its important to keep my tsh suppressed because they dont want the cancer to come back and it has been low most of the time but i havent felt well now its 7.0 i was actually feeling better apart from the weight gain. Im going back to only taking my 62.5 daily dose my appointment is on friday.
I think im just someone who doesnt need alot of meds.
When i had to have radiation after my op i had to come off levo completely for two weeks they said i would feel very tired no energy feel pretty awful well it made no difference to me at all. My endo at the time couldnt believe it.
If i miss a day not taking it now, it doesnt happen often, i feel so much better.
Just to answer your original question, I have been on the liquid for years and yes; I mix my liquid levo with a glass of water, always have done as I can't stand the sweet taste and it has made no difference to the uptake of the levo.
Hi! I had dry mouth from a medication. My doctor said “lemon drops” and they really work great. I can get sugar free here in the US. Hopefully, you can, too! Best wishes!
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