Having terrible trouble since Actavis became Accord. Had to stop Accord got severe symptoms.
I was taking 50mg Accord and half a 25mg of Wockeharte. I tried taking all my dosage 62.5mg with Wockeharte that made me ill, blurred vision, bloated, weight gain, aches and pains, breathless, palpartations, fatigue. I then tried Mercury Pharma 50mg and half a tablet of MP still very unwell i then tried MP 50mg with half a tablet of Wockeharte still felt terrible. This morning i went back to 50mg MP a half a tablet of MP out of pure desparation. I saw my consultant at the hospital last week and she had a word with the hospital pharmacist who recommended i try Aristo levothyroxine i have tried three independent pharmacists so far and not one of them have heard of it.
I am at my wits end.
The consultant has written to my gp saying that if Aristo doesnt agree with me she suggests that my gp prescribes liquid levothyroxine.
Whats the chances of that!
My consultant is concerned because my TSH has risen to 5.38 0.35 - 5.50 mU/L since the change of brands and she is worried about the importance of it being lower not wanting the cancer to come back.
My Free T4 is 16.5 10.5 - 21.0 thats gone down from 21.0
My Free T3 has gone down to 3.9 3.5 -6.5 pmol/L from 4
My B12 is still low although my gp says its normal. I have been supplementing with oral spray and B complex tablets but it has shown no improvement.
My consultant has written to my gp i received a copy this morning suggesting that my gp prescribes Aristo levothyroxine, if not available or tolerated the most appropiate next step is liquid thyroxine but would be unable to prescribe it from their trust and has to be approved locally. This needs to be tried with urgency as her current replacement dose is not maintaining her target TSH in regards to thyroid cancer.
Im now having to get further bloods tests done at the request of my consultant
Magnesium
Creatinine/Electrolytes + Urea
Bone Profile
Random Cortisol
ACTH
tTG IgA Antibody
Thyroid Peroxidase Antibody
Thyroid Stimulating Immunogobulins
Does anyone else take Aristo levothyroxine and if so do pharmasists have trouble getting it?
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Odinil
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Thank you for checking thats so kind.I am so desparate to try it after being recommended by hospital pharmacist that i am willing to cut it into quarters and take three quarters 75mg im currently taking 62.5mg as anything higher i dont function. I really dont know what else to do. Ive gone back on MP the last two days just to stop my blurred vision thats seems to go on MP but of course i get every other symptom going. Its so upsetting. There maybe no other alternative but liquid levo and pray that it suits me thats if my gp agrees to fund it.
Its got so bad that im struggling holding my job down apart from everything else 🙁
Hope you find some , helvellas document is very detailed so it may have addresses of manufactures in it , you could try asking them who they supply it to maybe ?Hope you find some to try , but i'd be telling GP it only comes in 100mcg's ,as it seems quite likely you'll have difficulty getting the correct dose by splitting , even of you do get some... it might persuade him to hurry up with applying for liquid option.
Sorry to hear you're struggling so much . Sucks doesn't it .
Thank you. It does suck you are right ive never known anything like it so many people are unwell and apart from this site theres no help out there you have to fight the system which isnt easy.I know its not idea to cut tablets but i dont know what else to do. I will email the consultant and let her know Aristo only comes in 100's and i'll try to see a gp face to face if i can because its so hard to get your point over without feeling rushed. I am a new patient due to moving areas so dont know any of the doctors, i do know that theres a endocrine doctor at the surgery but that may mean he is a diabetic specialist.
Just looked up Aristo its a Cambridge address got the telephone number and email i'll give them a call on Monday. Thank you x
hopefully they will actually 'see' a new patient with an urgent /complex issue like this, after all, they do need to get your TSH down somehow . Crossing my fingers you find some knowledgeable and empathetic new GP's , (yes i know it's a long shot , but there must be some decent GP's out there somewhere, so hopefully it's your turn to find one .
I'll put some polite pressure on the receptionist who decides if the doctor needs to see you apparently and cross my fingers.I looked up Aristo suppliers and they are based in Cambridge ive got their telephone number and email and shall call them on Monday. Thank you so much x
Is Teva a good one to take because i know the tablets are awful ive tried them in the pass.Is liquid levo the same as in finding the right brand?
I was doing ok on Actavis now my whole system seems mucked up. Its vital that my TSH comes down because of having thyroid cancer, its always been under 2. Did you have a problem with blurred vision before liquid levo?
Odinil Hi, I've been on Teva liquid levothyroxine for a good 6 Months to date, presently on 8.75 mls daily. I could not cope with literally any levothyroxine tablets, they made me so ill. I'm fine on liquid levothyroxine. Important it is not anything like Teva tablets.... 🙏😊
Hi Odinil, Teva liquid levothyroxine is totally different from the tablets. I can't tolerate any tablets, only Actavis, but now Accord have taken over, I can't take tablets anymore. From what I could source Teva liquid has the least allergic reaction. I think that is why my GP put me on that.
Mannequin18 Hi, I've been on Teva liquid levothyroxine for a good 6 Months to date, presently on 8 mls daily. I could not cope with literally any levothyroxine tablets, they made me so ill. I'm fine on liquid levothyroxine 🙏😊
Same here. I was okay on Actavis. But now Accord have taken over my symptoms and unbeatable allergies have come back. I'm currently on 7.5 ml of Teva liquid. I have been on that for 3 weeks, and everything seems to be normal again. Thank goodness.I'm glad it suits you too.
Hi Odinil. For every 100mg of Levothyroxine is 5ml in liquid. But your dose is already worked out by you gp, so don't worry about quantities, it's done for you. The liquid levothyroxine doesn't have the fillers in that seem to upset a lot of people.
The dose of levothyroxine will be in micrograms (mcg) - not milligrams (mg).
And there are four different concentrations of levothyroxine oral solution in the UK.
There could be 25, 50, 100 or 125 micrograms of levothyroxine in 5 millilitres of the oral solution. (Not all concentrations are available in all makes.)
I am a new patient at the surgery not sure who will be looking after me there thats if they agree to fund the liquid levo.My dosage is 62.5mg a day hopefully i can trust one of the doctors to work it out. Thats how i feel now my trust has gone out the window.
What if the gp refuses to prescribe it even though my nhs consultant has suggested that funds be put in place for it.
Levothyroxine oral solutions might be better absorbed than tablets. For that reason, it can be advisable to consider a slight reduction in dose. However, that would only make sense if you are already on an adequate dose.
Thank you for that. I actually got the doctor to agree to prescribing me with liquid thyroxine today hallelujah!I asked for Teva brand hope ive done right i am on 62.5mg at the moment. Not sure what that will be in liquid form as odd number maybe. I really hope it works for me fingers cross. I will get the B12 drops you mentioned too. What do you suggest for the folate deficiency are there drops for this too?
I think you might be have mis-remembered? I didn't recommend any B12 drops.
If you get an oral syringe, you should be able to adjust the dose easily. Check when you pick it up - and ask the pharmacist if one is not supplied. Using a spoon is not accurate enough.
If your doctor prescribes levothyroxine oral solution which is 50 micrograms per 5 mL, you would need 6.25 mL.
If your doctor prescribes levothyroxine oral solution which is 100 micrograms per 5 mL, you would need 3.125 mL.
Those would be exactly the same dose - but because levothyroxine oral solution is better absorbed, that would probably represent a small dose increase.
I was like that nearly 4years ago. I moved area. I did have a battle for 2years over my B12 injections for PA.I wrote several letters of complaints until I got what I should have.
Now I have a good relationship with my GP, so I had no trouble getting the liquid.
And if your consultant has asked for funding to be put in place, and if like me you can't tolerate tablets, then they have to treat you. Your condition is not going to go away.
Yes i definitely will. B12 injections goes on deaf ears the same as T3. Are B12 injections expensive for gp's to prescribe i get the same reaction as when i mention T3.
Today i spoke to a endocrine doctor at my new surgery and he did actually listen to me and seemed very nice even nicer when he gave me what i wanted haha! Im to let him know after 6 weeks how im getting on with the liquid levo and maybe then i will bring up again my very low B12 and folate x
Do you have an absorption problem with B12. And if your levels are low, then post them on here and someone will advise you.I'm so pleased you are receiving your Liquid levothyroxine. It's not a choice but a necessity for people who can't tolerate tablets.
This is a great forum for information. If I were you I would post all your levels, and someone will advise you. Take care.
Forgot to say. B12 is not expensive, and if you need it you must have it.
Yes it is low i did put my blood tests results on here and was advised to take a vitamin B complex which i did but the tablet didnt agree with me i think i must have a problem with all tablets i take B12 oral spray but my blood tests still comes back with low B12. The gp says its normal and wont listen to me when i explain that its low normal only just. I am absolutely worn out fighting the system ive won one battle liquid levo next i may ask my consultant if i can have some T3 as im a poor converter and push for B12 injections. One thing at a time i need to stay sane.
Managed to get liquid levo prescribed yesterday. I dont think the gp had much choice to be honest after receiving the consultants letter, concern about my tsh rising because of the cancer it needs to go down and basically giving him a running account of all my smyptoms. Now i can have it i feel abit nervous that that to isnt going to agree with me i must stay positive and believe i will feel like my old self
Good for you.Hopefully your levels will come down on the liquid. I'm hoping mine will too, as it was 5.6 on Accord tablets. Previously to that on Actavis it was 0.45.
Stick to your guns. And go armed with any information you get on here.
Yes same with me. Accord completely messed my whole body up. My tsh was always 1. something and my consultant was happy with that now ive got to have a cancer marker Thyroglobulin blood test because its raised i still get numbness and tingling in my hands and blurred vision. On Accord my eyes were so blurred the optician sent me straight to the a and e eye clinic before that i had no problem with my eyes. MPharma gave me terrible joint pain and caused terrible burning to my throat gp said it was reflux so tablets for that. I came off it and the burning stopped immediately and the joint pain stopped although i still think it is the damage that Accord caused thats still affecting my body.I have learned so much on this website just a fraction compared to most, i owe so much to thyroid uk its the reason i have just been prescribed liquid levo im sure i wouldnt have if it wasnt for this forum. i was determined that when my gp rang i wasnt going to be fobbed off. Now i just hope there wont be a problem when i pick up my prescription, that hasnt been plain sailing either everytime i pick my prescription up im told Wockehart is becoming hard to get or wont be able to get MercuryPharma soon. Then i get 1 box of Wockehart and have to wait to see if they get more a few days later im still not good on Wockehart but its better then the alternatives. Wockehart has caused me to put weight on and feel heavy and bloated. Ive found that every brand causes different symptoms. The gp said to me that most people on levo never have a problem and are perfectly well i politely informed him that i belonged to thyroid uk and couldnt agree. Not sure if this is true but my consultant at Addensbrooke told me on the subject of T3 that things could be changing soon regarding prescribing it on nhs she said that Thyroid UK are lobbying it.
Hi, Now ive been prescribed liquid thyroxine i spoke to my usual pharmacist i said i had asked my gp to put on prescription that i wanted the brand Teva after reading some comments on here that some are happy on it
She said she would order it but couldnt guarantee thats what will come in. I said so that means i will taking all different brands again the same scenario ive had with my tablets. Is this right, does this happen with everyone or is it time to change pharmacy. She knows the problem i have can i insist on one brand only? She asked if im lactose intolerant and does it have to be sugar free i feel shes building up to giving me whatever. Here we go again.
Yes, I know what you mean. My second bottle of liquid was Mercury Pharma. And although it has identical ingredients, it gives me the runs, and is excruciatingly painful on my stomach. So I have to insist on Teva. Which is the one my GP put me on. He must have done that for a reason.Hope you get sorted.
Can i insist that i have Teva only and refuse anything else. Is the pharmacy just being awkward or are they all the same? I dont know what i'll do if liquid doesnt agree with me 😞
If a brand does not agree with you, they can't expect you to take it, and I don't think that they would.Another brand might be okay for you. It's just trial and error for a while, till you find one that does.
Im running out of energy i feel worn out with it all. Its been an uphill battle for the past six years. Im trying my utmost to stay positive but feel im up against not only trying to educate myself on the subject but also trying to get myself well with the proper medication but the secrecy surrounding the subject of T3 by the medical professionals who freeze at the mere mention of the word i find upsetting as if im being deceived in some way not being told the truth all this because of money!! Allowing people to suffer is cruel and so wrong.
I asked the pharacist today if Teva liquid thyroxine doesnt agree with me what do i do she said well you will have to ask your gp for another prescription to try something else but its very expensive in other words carry on taking until its all gone before requesting another brand.
Im having my first doze of liquid in the morning and feeling very nervous thats its not going to agree with me. Im a positive person normally but this whole thyroxine saga has made me less confident.
Are you sure that you're reacting to the different brands and that whatever your symptoms are are not from something else? I haven't changed brands lately but get symptoms like headache or coldness and think it's because I'm drinking too much milk maybe or that I'm not spreading my T3 well enough or I've raised or lowered my dose or fine too much exercise ... really I never know why sometimes I'm good and sometimes poorly but it's not the brands for me. Even Teva I got used to after an initial 'jeez what is this?'
Anyway you probably know better than me but I just wondered if you were sure it was the brand changes giving symptoms.
I think it is for sure. Ive been sensitive to it since being put on it 7 years ago. I tolerated Actavis and Wockehart but as soon Actavis changed to Accord thats when all my problems started. I tried taking all Wockehart but i bloated up felt tired eyes blurred palatations then I tried MP eyes were ok but everything else not such pain in hands arms legs palpatations breathlessness fatigue tingling in fingers and toes. Last couple of days back on Wockehart eyes really blurry and very fatigued but havent got the pain everywhere else. So yes i do think its the different brands.Im going to contact Aristo the brand my consultant suggested i'll try to find out who they supply if i can get them and they agree with me great but i dont hold out much hope thats when i will see my gp and ask for liquid levo just like my consultant has recommended in the letter to him. I think my consultant said that once she gets my TSH back down from 4.9 and not before she may let me have a small amount of T3. My T3 is very low in range borderline but gp wont acknowledge it says it normal i correct him and say its low just the other side of red. Goes on deaf ears. How did you get T3 prescribed? Did you feel better once you took it? T4 just stores the T4 hormone converting it into T3 which feeds every cell in your body i am a poor converter confirmed by consultant.
I know how important vitamins are especially B12 but its not improving with me having the B12 spray.
Ive spent so long wondering if it could be this or that and im tired out with it all. I dont over exercise could do with more, i dont have a dairy allergy and i dont take any other medication i have four sprays of oral B12 tried taking B complex tablets but felt worst maybe i just cant take medication in tablet form. Im worn out trying to work it all out. Other then this forum you are pretty much on your own which makes me feel so sad that people who dont or cant go on the internet are left to suffer in the hands of gps who just dont under how bad this whole situation of levo med is 😪 or do know but wont fund it
I'm really not telling you anything as I'm no expert but if your tsh is that high it's no wonder you have continuing symptoms. I'd be aiming to get my t4 and T3 high in range and the tsh likely under 1. I'm under Kingston hospital - they say they treat symptoms not focus on numbers - I didn't have much problem getting T3. It hasn't cured my pains however. They permit me to experiment but don't give me much information or advice. Still experimenting!
My TSH has only risen since i took Accord before that on Actavis and Wockehart is was under 2. Thats where T3 and T4 should be but my T4 is top end of range and my T3 low end of range which my consultant said is fine they only look at the TSH ŕesult. We seem to know more then the doctors and consultants.Honestly what with the pandemic, if thats not bad enough, having to educate myself to get to the truth, everything the experts dont tell you, has exhausted me.
I have felt like giving up on many occasions but i will keep going until i get myself back to feeling well and myself again.
Just adding my two pennies worth - I’ve also had a shed load of weird side effects since Actavis changed to Accord. Stomach issues, skin rashes, constant heart palpitations, *ridiculous* weight gain.. my TSH has gone up with them too. I’ll be asking for Aristo tomorrow. You’re not alone in this! Lots of people seem to dismiss new side effects being caused by the change of this brand. It’s usually along the lines of “...but the ingredients are exactly the same! It’s just a name change!”. I’ve stopped taking accord Levo.. and my side effects stopped within 3-4 days. I restart them and boom, within a day or two my side effects are back.. which is enough proof for me!
Yes exactly the same for me. Accord was scarey, Mercury Pharma not much better blurry eyes was better but the pain in my arms and legs was frightening. Pins and needles and numbness in fingers and toes. Started taking Wockehart for my whole dose 62.5mg instead of half a tablet 2 x 25 plus half eyes blurry again and fatigue and thats what im on now until i pick up my liquid levo from the pharmacy. I rang Aristo yesterday and they informed me that the pharmacy wont Aristo it goes under the name of Alcuo i'll come back to you with the correct spelling and they only come in 100mg tablets and not ones you can cut unfortunately i would definitely have tried this brand if i hadnt been successful with the liquid. It was recommended to try by Addensbrooke Hospital pharmacy.
Odinil Re: B12, Nature Provides Bio Active B12 'sublingual drops'
2400mcg Methylcobalamin/Adenosycobalamin:-
66.6% Methylcobalamin and
33.3% Adenosylcobalamin; Other ingredients:- Reverse Osmosis water....
Suggested intake 0.8ml approximately 10 drops per day (I only took 5 drops) and my B12 rose from 266 to 780!
I also take Igennus Super B complex x 1 daily (helps to 'even out all the B vitamins); B Complex also contains B12
Hopefully, your Vitamin D, Folate and Ferritin are in 'optimal ranges' and work on getting B12 optimal (@ least 550).
If the B12 oral spray you have is 'BetterYou' it only contains Methylcobalamin, xylitol, citric acid, flavouring (natural apricot), potassium sorbate, green tea extract, chromium chloride.
After a 'bit of research', Methylcobalamin works better with Adenosylcobalamin which is in the Nature Provides sublingual drops (plus they don't contain 'nasties' 'fillers').
Hope this helps a bit. You're on a journey, and you will feel better in time, start with regular vitamins/minerals and liquid levothyroxine!!!!!!!!!!!
P.S. on my levothyroxine Oral Solution ' 50 micrograms mcg per 5ml' so a 5ml spoon is 50mcg (if tablet form); 7.5mls is 75mcg tablet form.
If you 'check'
@helvella's drop box you will see levothyroxine Oral Solution comes in different strengths.
I understand your frustrations etc., I think I have A 'Gold Star' regarding feeling ill/frustrated/trying to find out which medication 'suits me' etc....A minefield. THANK GOODNESS FOR THIS SITE AND ALL THE KNOWLEDGABLE PEOPLE!!!
I have been ill since last October mainly neuro related (increased migraines, possible paroxysmal hemicrania & dibilitating dizziness) I am convinced it’s since Actavis changed to Accord…it can’t be a coincidence surely? I’ve emailed them and they’ve assured me the ingredients are exactly the same! I didn’t take my Levo yesterday and today, I felt great yesterday however today I’ve been in bed all day with a migraine 😭 I’m at my wits
You poor thing i would change brands as soon as possible i felt so ill on Accord it was instant. My eyes were so blurred my optician sent me straight to a and e eye clinic. It was definitely Accord my eyes are not as bad now but still not right. I too was assured nothing had changed i dont believe it.
I refused to have them and stopped taking them i felt better straight away. I agree with you when i have the odd day when i dont take anything i also feel so much better.
Do you take Accord alone. I was 50mg Accord and 12.5mg Wockehart. I stopped Accord and tried taking all Wockehart 62.5mg but i didnt feel well doing that. Tried Mercury Pharma that gave me terrible pains and tingling in my hands and arms. Stopped that too and my consultant wrote to my gp advising him to prescribe liquid thyroxine as i am ultra sensitive to the tablets. Im still having a problem getting a brand that suits me. At least the palpatations have stopped. If i was you i would stop taking Accord they made me so ill.
I was so much better on Actavis. I know how you are feeling.
I really feel for you im struggling too with being treated like i am making a big deal of it all with the gp the consultant and just as bad the pharmacists when i quote what ive learned on this site i get no answers just blank looks. I do hope you manage to find something more suitable for you.
Hi,I couldn't settle on any brand of tablet form. I was ok on Actavis but when it changed to Accord it made me ill. I am so much better on liquid Zentiva brand only but I've had terrible trouble getting it.
Supplies seemed to have dried up not just Zentiva but all brands. It's been a nightmare. So stressful.
I was without medication for days and had to go back on tablets which made me really ill again.
Im back on liquid now as i managed to get four bottles but I'm worried when it runs out im going to have the same problem.
Thank you. I am on accord but feel that a batch has not agreed with me. I am also reducing down at the moment to 75/100 sp it has confused the issue with a lot of ill health. It is good that liquid thyroxine worked for you.
My consultant has reduced my liquid levo from 6.5ml to 5.0 daily because my tsh was 0.08. Since it was lowered i have felt ill. Fatigue aches and pains brain fog shes also lowered my T3 from 10mg to 5mg daily. I have no thyroid. I was doing ok with original dose but she wants my tsh to increase. My last blood test in december my tsh had increased to 0.34 that result was taking 5.0ml levo and 10mg T3. Thats when she kept me on 5.0ml liquid levo but reduced my T3 to 5mg daily. My next blood test is on 2nd March so we'll see what the result is then. My consultant insists on going by my tsh result even though i tell her i felt so much better before she lowered my meds. What with that and not being able to get liquid levo its been so stressful on top of my mum passing away in Feb and now helping my dad recover from oesophagus cancer op my stress levels have gone through the roof.
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