Thyroxine does not work

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Sazzia
Posts: 6
Joined: Wed Jan 25, 2012 5:03 pm
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by Sazzia on Thu Jan 26, 2012 3:45 pm

Thyroxine does not work

I have been taking thyroxine for 17 years and never felt any better for it. As I have got older my symptoms have got worse and increasing the medication has made me feel worse. My TSH is 6.7 and blood pressure is sky high, temperature 33% - 35%. Even though I have 30ish hypothyroid symptoms, I have been sent to neurology, trauma, gastrology, eye clinic, gynaecology, rheumatology, physio, endocrinology, histology and hand surgeon. Having numerous scans, MRIs, ultrasounds and examinations, nerve testing, spinal tap and smart plugs. How much has this cost the NHS?

Apparently there are certain vitamins and minerals which are essential for T4 conversion, why do doctors not test for these?

What can you advise and what hope can you give me for a better future ??

galathea
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Joined: Wed Jan 11, 2012 9:17 am
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by galathea on Thu Jan 26, 2012 7:07 pm

Re: Thyroxine does not work

According to the press release hy the Society for Endocrinolgy, (March 2010) a tsh of more than 4 puts you at risk of heart problems. If the T4 is clearly not working, then it's not unreasonable to give you T3 (liothyronine).... well not according to the Endocrinologist Antony Toft, who did an article for Pulse Magazine.

Find yourself a real doctor, one with a clue what he is doing and ask for a trial of either Liothyronine or Natural Thyroid.

Thyroxine alone is acknowleged to not work for up to 16% of all patients and some of these are thought to have a genetic reason why they cannot convert T4 into t3. ( http://jcem.endojournals.org/content/94/5/1623.abstract )

G

Sazzia
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Joined: Wed Jan 25, 2012 5:03 pm
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by Sazzia on Mon Jan 30, 2012 4:41 pm

Re: Thyroxine does not work

I would really like an answer from the thyroid experts to my question.
It seems the earlier posts are not getting much response.
Thank you Galathea for your interesting reply - do the endocrinologists agree with it?

ipman
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by ipman on Mon Jan 30, 2012 5:29 pm

Re: Thyroxine does not work

Sazzia wrote:I would really like an answer from the thyroid experts to my question.
It seems the earlier posts are not getting much response.
Thank you Galathea for your interesting reply - do the endocrinologists agree with it?
Take it from me Sazzia, Galathea most definitely does know what she's talking about. You really do need to get an appointment with one of the private doctors mentioned in my previous postings. If you're not suffering with a thyroid-related disorder, they will soon tell you so. Judging from your posting, it looks to me like you do need assistance from someone who knows how to use the available thyroid and related medications. You might also want to visit one of sites run by fellow sufferers - Google tpa and thyroid. If you're not already aware of the site, you will be amazed by how much useful information and guidance is waiting for you.

ipman

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Dr Graham Beastall
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by Dr Graham Beastall on Mon Jan 30, 2012 6:00 pm

Re: Thyroxine does not work

I am happy to pick up this chain of messages.

The reality is that thyroxine does work for hundreds of thousands of people in the UK. If it works for them then of course, they are happy and they do not complain. There are a small number of people for whom the optimisation of thyroxine replacement proves challenging. The aim of thyroxine replacement is to alleviate symptoms and, ideally, to restore the serum TSH result to the reference range. However, it is recognised that some patients have better symptom relief if the TSH is at or slightly below the lower end of the reference range. On the face of it Sazzia is slightly under-replaced with thyroxine because her TSH is just above the upper limit of the reference range. However, she has complicating clinical features that mean that increasing the thyroxine dose may not be wise.

Failure to convert T4 into biologically active T3 is an extremely rare primary condition. On the other hand it is a very common natural defence mechanism for the body to control the conversion of T4 into T3 when there is intercurrent illness of a non-thyroidal nature. Overcoming this natural defence mechanism by giving T3 may not be wise and it is better, if possible, to treat the intercurrent condition.
Dr Graham Beastall
President of the International Federation of Clinical Chemistry and Laboratory Medicine

galathea
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Joined: Wed Jan 11, 2012 9:17 am
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by galathea on Mon Jan 30, 2012 6:09 pm

Re: Thyroxine does not work

Isn't thyroxine supposed to have a sucess rate of 85%? That's great for the ones that do well with it (I was one of them for about 10 years) but then once we fall into the forgotton 15%, our problems really start.

How can we educate Doctors about what to do when they thyroxine fails? The problem is we get labelled as heart sink patients and generally ignored.....

We aren't a vocifereous lot because we like causing trouble, we're just fed up of being given the run around....

Galathea (Amanda)

galathea
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Joined: Wed Jan 11, 2012 9:17 am
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by galathea on Mon Jan 30, 2012 6:17 pm

Re: Thyroxine does not work

Dr Graham Beastall wrote:

Failure to convert T4 into biologically active T3 is an extremely rare primary condition. On the other hand it is a very common natural defence mechanism for the body to control the conversion of T4 into T3 when there is intercurrent illness of a non-thyroidal nature. Overcoming this natural defence mechanism by giving T3 may not be wise and it is better, if possible, to treat the intercurrent condition.



Dr Beastall, Please can you give us some examples of illnesses which prevent t4/t3 conversion. Can you also provide documented evidence people who have had conversion problems which have been resolved by treating these illnesses.

is it correct that t4/t3 conversion telies upon there being adequate supplies of ferritin and selenium and that D3 has a hand to play too. If so, can you explain why my doctor refused outright to test D3, and ferritin when I had a t4/t3 conversion problem. I still have the conversion problem but no underlying illnesses have been revealed. I have TPo antibodies of 1767 and have had hashimots for23 years. Is this a high number?

Galathea

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Dr Graham Beastall
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by Dr Graham Beastall on Tue Jan 31, 2012 9:53 am

Re: Thyroxine does not work

Galathea,

For reading on the non-thyroidal illness syndrome I suggest that you read Chapter 5b of the Thyroid Manager (http://www.thyroidmanager.org). This Chapter gives an explanation of the syndrome illustrated by some of the conditions with which it is associated. There is also a balanced consideration of the advantages and disadvantages of thyroid hormone (especially T3) replacement. Against this background there is growing realisation that the normal metabolism of T4 may be altered in a subtle way in a range of chronic non-thyroidal illness.

Unfortunately, there are very few high quality clinical trials to assess if there is any benefit from T3 replacement. In the absence of this evidence it is perhaps understandable why doctors are reluctant to consider its use in individual cases.
Dr Graham Beastall
President of the International Federation of Clinical Chemistry and Laboratory Medicine

ipman
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by ipman on Tue Jan 31, 2012 10:46 am

Re: Thyroxine does not work

Dr Graham Beastall wrote: The reality is that thyroxine does work for hundreds of thousands of people in the UK. If it works for them then of course, they are happy and they do not complain.
Dr Beastall, can I just ask how well-founded the above statement is? I am sure that many people do function perfectly well on T4 only but I would question whether things are as clear-cut as you suggest.

My suspicion is that, of the people on T4 only, there is likely to be a spectrum ranging from those who really do benefit fully, through those who think they are optimum but aren't but get by functioning on a modified lifestyle to those who feel or have been told that this is as good as it gets. Just how many patients are followed up by endocrinologists to ensure that they are indeed happy with the regime prescribed for them rather than adapting to their plight. Once an endocrinologist has a patient back in range on TSH, the patient is told that they are now fine as far as thyroid-related problems go, the blood tests say so. And if the patient is still symptomatic they are told that this cannot be a thyroid-related problem and that another cause, such as CFS, has to be investigated. In other words, the system is self-confirming because anyone who complains that they still have problems is told the residual problems are not thyroid-related and consequently the T4 treatment can be deemed to be successful and that patient chalked up as yet another resounding success for T4 only.

Getting the patient back into the TSH reference range is the easy bit. The hard bit is dealing with those patients who still have problems and those patients who were in-range from the outset. This is where mainstream endocrinologists are failing. The buck is passed to other disciplines such as CFS and psychology. You have been reading the various postings on this forum; have you not been distressed by the extent to which some people have been pushed from pillar to post, sometimes for many years, only to find that their problem was after all thyroid-related?

ipman

Sazzia
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Joined: Wed Jan 25, 2012 5:03 pm
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by Sazzia on Tue Jan 31, 2012 11:04 am

Re: Thyroxine does not work

Dr Beastall

I don't HAVE any chronic non-thyroidal illness. The many visits to different hospitals have proved that. I did discover that I had suffered a stroke due to uncontrolled high blood pressure, and last year was offered two hand operations for carpal tunnel ( which thank goodness I refused). Some of the other hospital visits were for suspected Sjogrens, Fibromalgia, Neuropathy, MS, Prolapse, Glaucoma etc etc. My original post was exactly my situation last year and I wanted to know whether you would suggest that I should have a trial of T3 (which my GP refused).

For a few months now I have self medicated with T3 and my 30+ symptoms and signs have either gone or been much reduced. Including my BP and carpal tunnel .

On the assumption that I was 'fixed' with thyroxine, I have lost 16 years of my life and £1000's of NHS money has been wasted. And I am only one of thousands.

Why HAVE there been no trials of the effectiveness of T3? Surely this is something which should be instigated by the Thyroid Associations?

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