Levo not working

Hi everyone, I am new here and to be honest not really sure on how these systems work so bare with me if I seem a bit stupid on here! I have been on levo for 12 years now and been ill since the day I started. I have ended up being diagnosed as CFS/MS, Fibro and Arthritis, yet I was a picture of health when they picked it up on a routine blood test. I have said for a long time that I think I am allergic to the additives in the tablets and that the t4 was obviously not being converted or something. I had a blood test 2 weeks ago and they finally agree with me that something is very wrong. I am on 175mcg of levo at the moment and is my thyroid test result:

"Serum free T4 level = 11.300 pmol/L (11 - 24)"

"Serum TSH level = 22.500 miu/L (35 -4.5)"

They have agreed to try me on tirosint to see if it is the fillers/additives or not, if that doesn't work we are going to discuss T3 or other options. Just wondering who else had had any problems like this and if anyone has discovered the reason for their issues etc?

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15 Replies

  • I wouldn't be surprised if it were the fillers but it could be that you aren't converting to T3 as well.

    I was 'over replaced' on 200mcg Levothyroxine after ThyCa, It was like a toxic shock and I gained multiple illnesses over the next 18 months until I was mostly bed ridden. The dose was reduced in 25mcg increments until I was on 100mcg but I was just sicker and sicker.

    In desperation I came off meds for 4 weeks. A sort of radical detox. It seems to have worked. I'm back on T4 plus T3 which seems to calm the frightful palpitations the T4 has always caused but the brain fog, fibro, tremors, parasthesia etc. haven't come back.

  • i bet its the fillers and the toxic effect of synthetic chemicals

    if tirosint does not help try Armour thyroid

    My husband is acutely chemically allergic and cannot tolerate levo or T3 but is fine on Armour

  • I was not good on Mercury Pharma Levo, had symtoms coming back after years of being well on Goldshield Eltroxin. Any way 6weeks ago I changed to Activist Levo and feel much better, no more palpitations and panic attacks. Feel like I did with the old Eltroxin before it became Murcury Pharma. I don't think there are as many fillers or toxins in the Activist although it is only 6weeks I definitely feel better. Hope you soon get sorted. Kathy. x

  • Hi Kathy,, good to hear your doing better on the actavis,, hope your trip to Australia was good,, I recall chatting to you just before you changed brand. regards,,, Ian

  • These are two links:-



    I hope you get the medication you deserve after being ill all these years.

  • Hi With those results I am not surprised you feel terrible. At the moment rather than thinking it is the T4, which it may well be. Have a Free T3 test too. I think you need T3 with the T4 and then probably even more t4. FT3 must not be over range ( blood test) but if low can account for that TSH, it lowers it. if your body is not converting enough T4, that will happen, However, as your T4 is also so low, I think it all needs a rethink. To start with, I would say continue with the T4 , introduce 20mcg T3 ( after the blood tests), then in 1 month have another test, TSH, T4 and Free T3,. I think then you will need the meds increasing. Slowly is the safe way.

    You may find you need to change to armour etc, but GP will not normally give it. I have a private script from my Endo . I cannot take T4, allergic reaction to all makes.

    If you do not improve soon, ask for a referral but fist find yourself a good Endo, then ask.


  • I wonder whether you are not absorbing the Thyroxine? Or unable to make use of it. Have you ever had your vitamins tested? People on this site usually get their Vitamin D, B12 and Ferritin tested in case they are low. With results like that no wonder you feel terrible.

  • I haven't heard of this tyrosint?

    And this has taken 12 years!!

    I was unable to tolerate normal levothyroxine and was basically left. Long story but eventually endo no.4 prescribed purified levo. It is made by Martindales and is levo with calcium phosphate only. It is quite expensive, most doctors and endos seem unaware of it.

    But your results .... Still very hypo!

    Looks like T3 will be your saviour. But have you had your free t3 tested???

    Please do not accept a diagnosis of cfs etc, you are hypothyroid and quite honestly I don't know how you have coped for these years.

    Levo is not for everyone but sadly doctors are taught to push this one medication on us.



  • I think you need an FT3 test to see for sure what is going on!

    I assume that the TSH rage should say 0.35-4.5...?

    Although some people have a problem with fillers - that would not really explain why the levo appears to not be helping you at all!

    Some people do not feel well until their TSH is towards the bottom of the range and FT4 towards the top.

    When were you tested? Did you take the levo before the test...?

    Do you take it with water only, every day, at least 30 mins to 1 hour before food...?

    It may be possible that you did not really need the levo when you started, but those results are not typical of someone who is being over-medicated.

    Please can you detail the symptoms you are having..? x

  • Hi, I have been on the branded Eltroxin for nearly 40 years and in sterling good health. I am horrified at what is happening with the pharmaceutical companies for I have been shunted onto levo and I am on my third lunar month's supply. I have been in touch with the manufacturers who state that they are still producing Eltroxin and that is the fault of the distributers Amdipharma, who, in turn, say it is a manufacturing problem and whilst admitting that there are slight differences between to two prescriptions also state that they are identical (does not make sense to the intelligence mind). I have had questions in both Houses of Parliament and they all sing the same tune. These nincompoops also state that it is only a tiny majority who suffer ill effects in the change of medication. After complaining to my own GP in writing, when I said that I would not have a blood test until my original medication was reinstated, he then tried to persuade me to take the blood test. I refused and he has given me another two months supply. I know my own body and for the first time in years I am getting adverse effects. I am absolutely positive this is as a result of change of the medication to the cheaper generic brand.

    I am now searching the internet for a more natural form of thyroxine and have come across some interesting facts since

    using this site.

    I have also tried to find out the source of levothyroxine from the distributers but have been given vague answers. This begs the question: Is the synthetic source derived from pigs who are fattened up on antibiotics, thereby interfering with our immune systems? I have told my doctor that I will, if necessary, find the more natural form of the hormone, pay for it and set up a legal challenge to the NHS to pay for it. I have paid my insurance for long enough and as a retired teaching lawyer I know my legal rights. I hope this helps for we are human beings not to be abused for the benefit of greedy commercial interests.

    I would advise everyone suffering ill effects from this medication to bombard their M.P.s big time and perhaps they will then listen and, more importantly, look at the seriousness of what is happening in the pharmaceutical industry.

    Hope this helps.

  • There appears to be some misinformation/disinformation here.

    Mercury Pharma and Amdipharm were both acquired by Cinven.

    Cinven decided to merge them into one company, AMCO.

    The idea of MP pointing their fingers at Amdipharm (or vice versa) is ludicrous - though that is not to say they haven't done so.

    And it is actually manufactured by another company altogether! Custom Pharmaceuticals Ltd.

    Synthetic levothyroxine is manufactured in factories - it does not necessarily come from any animal at all. It is not impossible that some is made from chemical compounds derived from animal sources. I doubt anyone of us here can find out if pigs are ever involved.

    What many consider the more natural forms of thyroid hormone are almost universally porcine derived and, in the USA at least, they are from the usual food chain. There are a few bovine products sold as "supplements" to avoid some aspects of FDA control. Being sure of their quality, stability and strength might be more difficult.

    The whole Eltroxin saga is strange - and made more so by little things like knowing that it is available in Ireland. I do agree that the apparent conflict between "they are identical" and "they are not identical" has not been resolved. I have been waiting for months for a promised response to a current question outstanding with the MHRA.

    I do keep wondering if the original Eltroxin formulation was unable to meet the new dissolution standards that have been imposed in the wake of the Teva issues.


  • Thanks for that, Rod, I have already been in touch with Customs in Sussex and they have told me that they are still manufacturing Eltroxin and that the fault lies with the distributors. Yet the disttibutors are blaming the manufacturers. So someone is telling me porkies. Under the Trading of Medicines regulations, manufacturers, wholesalers (ie distributors, pharmacists and prescribing doctors are responsible for the health of patients in this country and that any attempt to create a shortage e.g. by exporting abroad, constitutes a criminal offence with enormous sanctions if proven. Yet Earl Howe in the House of Lords has informed me that if there is a parallel request then it is legal to export to other European countries which seems to conflict with English Law. All that I know Rod, is that since the switch to levothyroxine this has had a deleterious effect on my health and well being. Do you know where, in Ireland, that I can obtain Eltroxin?

    Thank you for your input.

  • Not the slightest idea!

    Maybe you will be lucky and a resident of Ireland will respond - if not, you could try by asking a specific question.

    I get the impression that Ireland is quite tightly controlled so you might not be able to find a supplier willing to send it to the UK.

    Wrong and unfair though it may be, you could try another make altogether. For example, Aliud or Henning from Germany. The cost is not enormous. Some information about these products here:



  • My mum was on Eltroxin for donkeys years as I was growing up. She was then swapped over to this new levothyroxine stuff and she started to go down hill fast. She has seized up, slowed down, developed tons of other health problems such as arthritis, high cholesterol, high BP, diabetes etc, etc, etc. i have only ever been put on levo and I have been rough from day one. I went through a really good spell some time back, there was a lot of stress etc but I coped fantastically well and my brain seemed to be accessible too. I was really amazed and then I suddenly realised that in all the panic, I had completely forgotten to take my levo for the last 3 days. That is what made me realise that my suspicions of the levo making me ill were right. The thing is that I need the thyroxine but the levo is killing me. It is now showing to be not working too as I am so bad, 175mcg of levo a day = free T4 11.3 (11 - 24) and TSH 22.5 (0.35 - 4.5).

  • I am still new to these types of forum and so I may be a bit disjointed in where I post my answers etc so please bear with me if I seem to be responding in various places. Apart from thyroid being out of sync, my bloods are abnormal in other areas. I am showing up as possible PA but they keep saying that as my B12 is within range, that I must have a drink problem etc. I can go months without even touching any alcohol and when I do I have the odd one. I am so ill after having any alcohol that it is not worth the price, I will try to feel normal for special occasions etc and have a drop of wine or something but I feel ill after just half a glass.

    I have been told that lots of PA patients are accused of being alcoholics for a long time before they are diagnosed and that the PA does the exact same thing to the blood as alcohol abuse. The GP's will not get it though that their B12 test does not show active/accessible B12 levels. They need to test for the intrinsic factor which the better Dr has asked for in the past, but the labs refuse to test it if the faulty B12 test says that the B12 level is ok.

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