Levothyroxine dose sizes

[shaws]

I want to know why the BTA is adamant that levothyroxine alone is the hormone which give us back our health and wellbeing? (I have eventually recovered my health by discarding thyroxine).

The approx 50% of us have their lives turned upside-down by the inhumane insistance that T4 is the 'be all and end all' of treatment and usually by 'replacement doses'. They are completely unaware what a toll on our health is being taken when patients complain about continuing symptoms - they are told that because their blood test is now 'within range' that it is due to some other problem: they are depressed: weight gain - you eat too much. In the meantime marriages are falling apart, they are forced to give up work, told they are lazy, depressed, nothing wrong with you. etc etc. How this humanitarian crisis has come about is by the regulations.

As one of the many thousands of hypothyroid people in Britain, I was given T4 and my health became worse. I was fortunate to source information which states that a 'replacement' dose of T4 is the worst product for the recovery of health.

We trusted our physicians to do everything in their power to make us welll (some try but are hindered by the regulations). We only need a hormone replaced but we have been failed. If we can afford - or even if we cannot afford it - some of us have found our way out of the quaqmire of 'replacement levothyroxine' by our own hand. We have to pay for our lifeline (some cannot) Our trust in the British Thyroid Association has evaporated. If a doctor dares to give us a trial of another product they have the possibility of prosecution and we are dictated to by the reliance on the TSH which again fails many,many people who would have been treated in the past.

I hope you will give doctors permission to allow us to trial different hormone products, to allow us a healthy and happy life, with all effects of hypothyroidism removed or kept under control and to treat us by symptoms and not the TSH.

Also some medical people are arrogant and unsympathetic to the patient, who is usuall in tears by the end of the consultation. Who else in their desperation can they turn to? it would seem to be 'self care'. Since the arrival of the TSH as a diagnosis, three new diseases have eventually been named : fibromyalgia, chronic fatique and M.E.

A brillaint logistician and scientist wrote to the BTA with scientific evidence of their wrong approach to treatment. They didn't even reply. Heads in the sand.
*****
quote below:-

I would like to remind the Committee of the words of one of their countrymen who was one of the greatest intellects in history

Lord Bertrand Russell: “I do like clarity and exact thinking, and I believe that very important to mankind. Because, when you allow yourself to think inexactly, your prejudices, your bias, your self interest come in in ways you don’t notice, and you do bad things without knowing that you’re doing them. Self deception is very easy. So I do think exact thinking immensely important.”[5] unquote

The Committee contends that T4 is more stable,safer, and more effective than desiccated thyroid.
This proposition, however, is a mere presumption,one that is refuted by evidence that I present below.
The Committee bulwarks its proposition only with an Issues Raised by the Committee

http://www.thyroidscience.com/Criticism ... .16.09.pdf

[peterdorey]

Why is it that in the United States of America there are 12 values of T4 tablets available compared to the 3 in England ?

I have written to my MP in order to find out why it is we only have 3 values of tablet.
The answer is, it is set by the Drug companies, not by the Health Care Professionals.
Why should this be so ?

The Medical Professionals in England do not seem to understand the need for this care in setting dose levels.

Maybe they should read the Information leaflet supplied by the US drug companies, and learn something unknown to themselves.

How can a patient "titrate" their dose with out the range of tablets needed ?

Regards
Peter Dorey

[Nurse Dianne Wright]

Hi Peter

The medical profession are greatly concerned about the dose of levothyroxine and indeed the BTF have been campaigning for years about this very issue and have had many meetings with drug companies.
We as health care professionals in our clinics find it very difficult to offer people the correct dose and it there were smaller doses e.g. 12.5mcg tablets, it would be so much easier for all concerned.
I wholeheartedly agree that doses cannot be titrated effectively without an increased choice of doses. The medication is fairly inexpensive so drug companies are not too interested in a greater choice of doses but we will continue to campaign for different doses.

Regards

Dianne Wright
Specialist Nurse in Endocrinology

[shaws]

Nurse Wright,

I would just like to re-iterate that thyroxine was useless for me. I had many, many more symptoms of illhealth after being on it than before with each symptom treated as separate to hypothyroidism

I took T4, saw a neurologist, and cardiologist - had numerous ECG's. When the kind NHS Endocrinologist allowed me to add T3 to a reduced T4, it gave me some life back. I eventally went on T3 alone then onto a dessicated thyroid products. T3 solved the problems of some symptoms but, for me dessicated is a miraculous product.

I am well thank God.

[peterdorey]

Thank you to Nurse Wright.

I accept that T4 is not suitable for all patients.

However, it has become apparent to me and my wife that a small change of dose can evoke an "I am there" response.
Lest there be any misunderstanding, this was on 106mcg as a daily dose. This was done after having several weeks at 100mcg one day followed by 112.5mcg the next and so on.

Now we know that this is not supposed to happen.
But the Patient knows best.

If you want to know what happened next. After 76 days on 106mcg it became not quite enough.
So the dose was increased to 112.5mcg. Alas this became untenable after a short while.
She was then diagnosed B12 deficient and then "slight Iron deficiency" serum iron 8 (range 11-25).

Taking iron is a real problem as it interferes very much with well being.
How is one, or indeed the two of us supposed to cope?
Please help.

Regards
PeteD

[Dr Petros Perros]

Dear Pete,

It seems to me that your wife was found to be hypothyroid, increments of levothyroxine were helpful but of limited duration until the next increment. She was then found to be deficient in B12 and iron. If I have got this right, then I will make a couple of comments. In retrospect the transient improvement after increasing the dose of T4, plateauing and the regressing, is highly suggestive of something else going on and being responsible for symptoms. Then the B12 and iron deficiency turn up. This is why it is so important that patients are evaluated by physicians thoroughly. The symptoms of thyroid disease are common to all of us from time to time and have multiple causes and I strongly would discourage people self-diagnosing. I guess there are remaining questions, such as why does your wife have B12 and iron deficiency and is that a manifestation of something else? I hope her doctor can address this. In the meantime it is sensible to replace the B12 and iron with supplements and optimise the thyroid replacement treatment.

Replacing iron should not be an unsurmountable problem. One needs to consider increasing the amount of iron in diet and making some adjustments in the amount of red meat for instance can be helpful. Your practice may be able to offer more specific dietary advice. If supplements in the form of tablets or liquids are required then there is a wide range of products. In exceptional cases when all else has failed iron can be given as an injection. You are right, iron can interfere with the absorption of thyroxine, but as long as you leave 1-2 hours in between taking thyroxine and iron it is OK.

I hope this helps