reactions to levothyroxine

[martin2727]

many years ago my wife had a partial thyroidectomy- everything was fine until a 2 years ago (age 63) when lack of energy became apparent, which at first we thought was age related.
after a visit to our GP and blood tests hypothyroidism was diagnosed, and she was prescribed levothyroxine. i am not listing test results as this is not our problem.
my wife unfortunately sufferrred terrible reactions to the levothyroxine - even to the point where life was not worth living and that she was barely able to function!!

we are not averse to using synthetic drugs and would have been happy if the levothyroxine had worked!!
we were bought up with respect for doctors and i am regretfully writing this as our faith and respect for the medical fraternity has been shattered!
we were then referred to a consultant endocrinologist who basically said my wife would have to put up with the reactions and that there was nothing else he could do, leaving my wife in a terrible state of health and unprescribed as she could function with the levothyroxine.

i then started to search the internet for helpand was literally horrified with what i found.
all round the world for some 100 years 'natural dessicted thyroid- porcine' was and is prescribed for patients who cannot tolerate levothyroxine
in the early 70's the NHS made levothyroxine the ONLY prescribable treatment for hypothyroidism (and even today it still is one of the very few conditions for which there is only one prescribable treatment)
subsequently the consultant endocrinologist stated that he and that no endocrinologist would ever prescribe the Natural Dessicated Thyroid, but would not offer any help to the problem of my wifes horrific reactions to levothyroxine- and went dumb when asked about the 'hypocratic oath' to help patients

i was again horrified that searching the internet brought hundreds and hundreds of other people who were suffering in the same way with reactions to levothyroxine and yet i was unable to find any record anywhere of anybody being other than helped with no side effects by Natural Dessicated Thyroid.

on return to our GP, now armed with a list (gathered from various thyroid sites)of doctors and consultants-NHS and Private - GPs and Consultants we thought that we could finally get the help we so desperately needed

alas no, our GP told us that Natural Dessicated Thyroid was not on the list of NHS Prescrbable Medications and that his NHS Insurance did not therefore cover him - and that if something did go wrong, no matter how unlikely, that if it did go to court and he stated he had prescribed Natual Dessicated Thyroid - of which he had no clinical knowedge he would lose the case and could be made bankrupt and lose his house, job and not to be able to provide for his family.

there has recently been a GMC case where a Dr Skinner had been suspended for the prescription of Natural Dessicated Thyroid - on appeal he was totally exonerated- had testimonials from some 2000 people YES 2000 People - and some 200 people attended the GMC appeal hearing each day in support of DR Skinner, having paid their own travel, accomodation costs, etc. the GMC also said that it was alright for Doctors to prescribe Natural Dessicated Thyroid where patients had bad reactions to Levothyroxine.

but guess what, though it may not be the GMC's direct responsabilty, the prescribing of Natural Dessicated Thyroid is still not on the list of NHS prescribable medicines and is still therefore not covered by NHS insurance and still therefore most NHS Doctors will not Prescribe it.

my wife and i are pensioners and cannot afford to travel/pay for consultations and private prescriptions!!!!!

we have been left with no option but to 'self medicate' with much trepidation and fear (though with as much research as we could find) purchased Natural Dessicated Thyroid from abroad. i am glad to say that my wife has her life and health back, with no reactions at all!!!!!!!!!!

i have sent this topic out of frustration, i cannot believe that this situation has gone on for so long with so many patients suffering and finding so much intransigence within the NHS and Medical fraternity!

i may not have all my facts 100% correct, but i challenge your experts to disagree with the main substance of this letter beg and implore that this situation can be rectified forthwith and allow my wife and others to be treated correctly and restablish my faith in Doctors and the Medical/NHS System

[Tillytan]

The answer to this is that T4 only costs £1 a packet and that is the fact of it. You speak for many of us, with many having to purchase their own medication.

[supressedtsh]

well said, I look forward to reading the reply from our experts.

I would like to point out though that some doctors do prescribe natural desiccated thyroid, I have started a separate question for the experts.

Were you aware that there is such a thing as purified levothyroxine? This is levothyroixne with just one filler. It is more than likely the filler that your wife has a reaction to.

There is also liquid levothyroxine called evotrox.

[martin2727]

re reactions to levothyroxine
hi suppressedtsh
thanks for your reply
what is the filler that they put in levothyroxine?
why is a filler used that causes adverse reactions?
is there any evidence that pure thyroxine does not cause adverse reactions where with a filler does?
neither our GP or Consultant Endocrinologst have ever mentioned pure thyroxine - is it generally known by Doctors and is it on the NHS prescribable medicines list?
any help appreciated
martin

[auto_immune]

re reactions to levothyroxine
hi suppressedtsh
thanks for your reply
what is the filler that they put in levothyroxine?
why is a filler used that causes adverse reactions?
is there any evidence that pure thyroxine does not cause adverse reactions where with a filler does?
neither our GP or Consultant Endocrinologst have ever mentioned pure thyroxine - is it generally known by Doctors and is it on the NHS prescribable medicines list?
any help appreciated
martin

Hello Martin,
I am not suppressedtsh, but I'd like to answer your question.... it is not just one filler that is put into Levothyroxine, but a number of them. You will see which ingredients are used on any leaflet accompanying any medication. Every brand or generic mediation contains fillers in order to produce a pill. No brand or generic make will have identical fillers - they all contain their own mix. Not everybody has adverse reactions to certain fillers - most people don't have them, but we are all individuals, so side effects can occur. There is no way of knowing to which substance you might be allergic to unless you have been extensively tested out (which is unrealistic). So if your wife had become allergic to some of the fillers in Levothyroxine, it might be an idea to try a different brand or generic make. There is no guarantee that a 'pure' T4 without fillers will definitely work for your wife, but it might be worth a try... and yes, doctors know about pure thyroxine - or at least they should know about it.
However - it is not necessarily an allergic reaction to fillers that your wife is experiencing. Sometimes Levothyroxine just ceases to work, even after years of working successfully. In most cases a natural dessicated thyroid product like Armour, Erfa or Naturethroid WILL work - so that is another avenue to investigate.
Furthermore - your wife should ask her GP to check her mineral and vitamine levels - namely: ferritin, folate, magnesium, zinc, copper, Vit B12 and Vit D3.... if she were low in ANY of those - even low within their respective ref ranges - any kind of thyroid hormone won't be utilized properly... a low iron status, for instance, can stop thyroid hormone from working ... and this is very common. The same goes for low D3 levels.... it really is worth checking it all out.
With best wishes from a fellow sufferer.

[supressedtsh]

What I mean is that normal levothyroxine has several fillers in, even talcum powder! If we have a reaction to the tablet, it is usually the fillers that don't agree with us.

Martindales make levothyroxine that is in just one filler, usually calcium phosphate. These are very expensive tablets as they are specially made.

[Mireille]

What I mean is that normal levothyroxine has several fillers in, even talcum powder! If we have a reaction to the tablet, it is usually the fillers that don't agree with us.

You are speaking for everyone when you should be speaking for yourself. Levothyroxine does NOT work for everyone... with or without fillers!! There are certain thyroid conditions which have not been taken into consideration when responding, such as thyroid hormone resistance to T4 only, and others.

Unfortunately, the medical profession only know about Primary HypoT. There is Secondary and Tertiary/Type 2 Hypothyroidism which the medical professionals do not take into account. They call these 'rare' cases but they are not. Thousands suffer from T4 to T3 conversion problems as well as peripheral cellular resistance to thyroid hormone!!

Mireille

[KatieTattie]

I stopped taking my t4 two days ago as I was bed ridden with horrific muscle cramps, I don't know what will happen to me but at the moment I don't care. I couldn't even hold my baby and at least now I can force a laugh and smile and play with him for a bit.