Beware of changing your medication!!

For anyone thinking of trying different medication always check with thyroiduk who seem to be the only ones who know the equivalency of strength of various preparations.

I am one of those people who cannot tolerate levothyroxine tablets probably because I am a diagnosed coeliac (some thirty odd years ago and with Graves Disease some 5 years ago). I was lucky enough to fine Armour thyroid tablets after having radio iodine treatment the following year and then becoming HYPOTHYROID. I have been taking these tablets for more than four years now. Most of this time I have bought them which is expensive but recently I moved surgeries and aske the new doctor if I could try the LIQUID thyroxine which is available on the NHS so saving me the expense.

This was agreed and because I take 105mcg tablets daily (90 plus 15) the liquid was prepared as a 100mcg strength which I proceeded to take. After 4 weeks I felt terrible, dizzy, sick , loss of appetite etc etc and so went back onto the Armour thyroid and arranged a blood test. Guess what my TSH had gone AWOL so I realised there was an issue with the liquid thyroxine.

I spoke with thyroiduk and found them most helpful. the upshot being that the liquid was NOT the SAME STRENGTH as the tablets. In fact the liquid was UNDER STRENGTH by 50% !!

When I checked with the endocrinologist and the doctors neither knew about equivalency of NDT and synthetic preparations. No one knew or even realised the difference, only thyroiduk could provide the answer. Even other thyroid organisations did not have a clue, yet NDT preparations were the first things to be used long before the synthetic preps were made available.

So beware if you do consider changing from levothyroxine ( the licensed preparation) to something like Armour thyroid (NDT). Make sure the dosage strength is equivalent otherwise expect at least 12-16 weeks of feeling absolutely grotty, nails breaking etc until the TSH is back to what is 'normal' for you.

I have to question what coverage is given regarding the treatment of the thyroid in medical school if the medical profession are so incapable of dealing with simple issues of dosage strength.

Meanwhile I am now trying to get NDT on prescription which as we all know is no easy matter. I am appealing as an EXCEPTIONAL CASE to my local CCG but they do not subscribe to the use of NDT. If only it were possible to find one doctor who accepts that NOT EVERYONE CAN TAKE THE LICENSED MEDICATION AND ACCEPT THAT NDT, WHICH USED TO BE THE ONLY WAY OF TREATING HYPOTHYROID ISSUES, IS THE BEST TREATMENT FOR SOME PEOPLE BUT NOT EVERYONE.

Since joining this communication group I am utterly amazed at the number of issues raised yet the medical profession are totally unaware of how problematic treating the thyroid is and how few know how to deal with it.

I hate the terminology 'NORMAL' because it is so vague and what is NORMAL , certainly as far as testing for how one feels is concerned ?? Only those of us who know how grotty we feel know that it is not normal to be like that. How do we convince the medical profession to take us seriously ??

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  • I feel for you. I have the same issues with trying to get Armour even after a top endocrinologist wrote to my doctor saying synthetic T4 and T3 will not work for me. I have appealed my CCG but have got nowhere they just said it is not licensed in the UK so you can't be prescribed it. So from free medication to £100 per month!

  • I am sorry you've had awful problems. Maybe you need to see your MP as the BTA and RCoP refuse to amend their guidelines, i.e. levo only according to the TSH. Some people's TSH hardly moves yet they have severe clinical symptoms.

    I am glad Thyroiduk.org.uk was so knowledgeable in helping you discover you were actually taking too low a dose. Because the above organisations made False Statements, Dr Lowe who would never ever prescribe levo sent this article to both and neither even acknowledged the receipt despite 3 further yearly reminders.

    thyroidscience.com/Criticis...

    Dr Lowe died of an accidental death 2+ years ago

    Another Endocrinologist also stated that if our TSH is 'in range' any other complaints or dissatisfaction with levo is due to a Somatization Disorder. How ignorant for people who are supposed to know about metabolism.

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