Thyroid and Adrenal Testing and Treatment (PE1463)
There is one new petition for consideration today. Petition PE1463, by Sandra Whyte, Marian Dyer and Lorraine Cleaver, is on effective thyroid and adrenal testing, diagnosis and treatment. Members have a note from the clerk, the Scottish Parliament information centre briefing and the petition.
Convener and members of the committee, thank you for bringing us here today. We are very proud to be Scottish today and to be showing how it is done. Many thousands of people and agencies are trying to get our point across to Parliament and asking it to do something about it. We are speaking for them.
I am considered a success story. On advice from endocrinologists, I had my thyroid removed, with the assurance that they would replace the hormones that my thyroid could no longer make. That did not happen. I was given the standard T4, but I could not convert it. However, when I said that I had all these symptoms and severe illness, I was told that it was in my mind, that it was anxiety and that I had fibromyalgia. I nearly lost my marriage. Twelve months ago, I was about to commit suicide, but I have a little boy and a husband. If it was not for a charity, I would not be here. Thyroid UK put me in touch with a humane doctor, who saved my life.
Thank you very much for raising the committee’s awareness of the difficulty that both of you have experienced. I think that Lorraine’s story captured the imagination of the committee, and I am sure that it would do so more widely. I am certainly convinced by the story that both of you have told the committee today. However, is there evidence that there is a wider problem with the way in which general practitioners are behaving on this issue? Clearly, that is the issue that the Government will throw back to us. We would like to do some spadework as we pursue the petition through its next steps.
I think that the problem starts with GPs’ training. However, they are frustrated by the issue as well. We have gone for help after our diagnoses, but they say that their hands are tied. They are frustrated that they cannot help us.
There are no guidelines in Scotland for the treatment or diagnosis of hypothyroidism. Everybody refers to the Royal College of Physicians policy document, but that was never requested by the health department—it is just the RCP’s own policy document. Ultimately, the RCP is a charity. So, because of the lack of guidelines, GPs crib from the RCP document and base their guidelines on that. However, those guidelines do not provide for people like us who do not convert T4.
There is no mention of that in the RCP guidance notes on primary hypothyroidism. You will note that the RCP document is called “The diagnosis and management of primary hypothyroidism”. There is nothing in it about conversion failure. If we could get guidelines for that specific area that also took into account the adrenal problem, that would open up the whole area.
So part of the issue is about procedures in the wider sense. Normally, there is Scottish intercollegiate guidelines network guidance to direct doctors on how to deal with different diseases.
Doctors feel constrained at the moment because, if they help us—and they want to help us—they get dragged up in front of the Royal College of Physicians, which is a nightmare. The one who helped me and saved my life had that battle a number of years ago. After 14 years of my not knowing what was wrong with me, that doctor knew what was wrong with me within five minutes of seeing me. To me, that man deserves a knighthood, never mind getting struck off—in fact, he was not struck off; he ended up retiring because he wanted to help people.
One of the positive things about this committee—although I would say this, wouldn’t I?—is the fact that we can focus on issues. Recently, we have focused particularly on medical issues, such as pain relief, as has been mentioned. I will say a bit more about this later, but we have had a number of successes recently. It is thanks to Alex Neil in particular that we have managed to achieve a number of solutions to problems that petitions have raised with us. There have been three or four good examples of the committee working extremely well in that regard.
Good morning, Sandra and Lorraine, and thank you very much for your opening comments. To follow on from the convener’s question, can you describe to us any evidence that you have collated from United Kingdom sources or even further afield?
We have been in touch with world-renowned people in the field, who are quite willing to come to Scotland with their abundance of proof. Dr Lindner in particular has so much evidence on his website alone to prove the point. It deals with all the different conditions and shows what they go on to if they are not treated. The proof is out there in abundance.
Where is that physician from?
Dr Lindner, who deals with hormone restoration, is in Pennsylvania.
Could you elaborate on what communication you have had with the Scottish Government and the Westminster Government?
Yes. Elaine Smith has been wonderful.
She is that.
We got in touch with Elaine Smith originally because she had debated the issue. She asked Anthony Toft about the issue. We could not believe that we were seeing in print that he was saying that doctors need to take a holistic approach to the issue and look for signs and symptoms, and that there is conversion failure. That inspired us to do what we are doing today. Elaine is brilliant; she is very passionate about the issue.
Thank you for doing what you are doing today. It is great to see you along here.
Good morning. I add my welcome to Anne McTaggart’s. I just want to dwell for a minute on a particular aspect. I acknowledge what you said about the doctors, but my dilemma is about whether doctors in general—I know that you have specific examples—follow through with T4 and T3. At what stage do they decide that they must go further clinically? Are they trained sufficiently on the issue? Do they recognise the symptoms?
Before I answer you, I want to say that our petition is not a gripe about the NHS. All my treatment was private. Obviously, I started with a GP, but it was private thereafter. The issue is not the NHS but the training from the RCP that filters down, which results in doctors’ hands being tied on the issue.
It is a delicate area, but the whole system needs looking at, to be perfectly honest, right back to the source. Why are we keeping people ill? That is the simple question. It was 14 years before my illness was diagnosed, and I am not the only one: there are so many out there who are getting treatment for conditions that are not the condition that they have, because doctors have not diagnosed it. Such people are given antidepressants—they are going great guns out there—because doctors do not know what else to put people’s condition down to.
The problems have ramped up since the introduction of the TSH test as the gold standard for diagnosing thyroid disease. That has been the standard since the 1970s but, since then, just a couple of years after the insistence on having the TSH test, two new diseases have been identified—fibromyalgia and chronic fatigue syndrome. Wherever you fall in the parameters that some laboratory has set, which change from city to city—
They are actually denying us all the hormones. I cannot take T4, because I have a—
I understand that. The difficulty that I have—it is not a difficulty but, clearly, it is something that has to be resolved—is this. In the document “The diagnosis and management of primary hypothyroidism”, the RCP states:
We are given antidepressants, except when we get cognitive behavioural therapy, and told that we have a somatoform disorder.
We are told that it is in our heads.
So you are saying that the diagnostic process is not being followed.
Absolutely. I had fibromyalgia, allegedly. Last year, I weighed 13 stone, had high cholesterol, used a walking stick, wore a wig and was ready to take my life. I do not have any of those problems now. My new problem is that the General Medical Council is intent on deregistering the doctor who saved my life, so where will I source the pig thyroid that keeps me alive?
How often are patients referred to endocrinologists? Can endocrinologists prescribe wider treatments?
They can prescribe T3.
Why is that not happening?
I do not know. It is probably because GPs are not seeing the signs of thyroid and adrenal disorders in the first place. Some of the symptoms are weird—you would laugh at some of them, but they are not funny.
Let us think outside the box. Are there any recommended homoeopathic cures?
No. When we go to holistic practitioners, they basically provide replacement hormones. There are bioidentical treatments that can be sufficient.
I am taking porcine thyroid, which is from a pig. That was in common use up until the late 1950s and into the 1960s. If you cannot tolerate the one and only medication that is available and you have a reaction to every side-effect listed on the patient leaflet, you go and tell the endocrinologist. They said to me that my condition was not thyroid related but was something else. Where do you go when faced with such an attitude? There are none so blind as those who will not see.
Good morning, Sandra and Lorraine. You have raised valid points. Clearly, we will take those on board. It is also clear that you have done considerable research—well done.
Do you mean within the equivalent of NHS-based systems?
Yes.
No. That is why I am proud to be Scottish. In Scotland, they have gone further than anyone else.
They are slowly but surely making changes in the States. They have narrowed the reference range in which people are diagnosed, and they are looking again at that.
Thyroid Change, which is another agency that we got in touch with, is in contact with people in 125 different countries. That gives you some idea about the disorder—it is an epidemic.
Research emerging from this country is questioning the accuracy of a TSH test. I have papers here from John Midgley in Yorkshire, who is a clinical biochemist. His latest paper, “Is pituitary TSH an adequate measure of thyroid hormone-controlled homoeostasis during thyroxin treatment?”, was published two weeks ago.
They come up normal.
The bloods look great, but that is all that is great. However, the evidence is coming through.
I want to get back to the original question. As far as you aware, no other country is ahead of us.
Not as far as I am aware. They are looking at the disorder with interest in America.
To follow on from Angus MacDonald’s question, have you had any correspondence with the World Health Organization? Its role is to co-ordinate health initiatives across the globe.
No.
If the committee is so minded, it might be useful for us to contact them to get a response.
I am curious about the prevalence of the disorder. You mentioned that there is increasing awareness of the condition across the world, and the committee’s briefing suggests that about 103,000 people in Scotland have been diagnosed with hypothyroidism. I take it that the condition varies from individual to individual. Will you flesh that out a little bit?
That is why we are asking for the medication to be targeted to individuals. Our chemical build-ups are all different, and we all have to adjust differently to our chemistry. That is why there should be the tests that we are asking for. There is a fantastic metabolic analysis test that covers the whole spectrum.
Yes. Some 103,000 people have been diagnosed with hypothyroidism.
They are lucky. If they are on levothyroxine and are converting the thyroid hormone, that is excellent. They are on the right treatment with levothyroxine. We do not have a problem with that or the guideline on it, but we need to address the problem of the failure of that.
I was trying to tease out the numbers. How many people who are diagnosed with hypothyroidism have the problem that you have described?
I spoke to my endocrinologist on Friday. He is an NHS endocrinologist, and he said that, obviously, he is just sent the people who still have problems, and everybody else is at home doing great. He said that he sees possibly 20 per cent of the people who have been diagnosed. About 20 per cent have problems and still have symptoms, and he prescribes T3 on occasion. However, he has also told me that he feels hamstrung. He feels that giving those people T3 is still frowned upon, but he is frustrated that he cannot make his patients well.
The figure of 20,000 is quite a lot. We are talking about 20 per cent of 100,000.
Yes, but I asked why it is acceptable that the test misses so many people, and it comes down to money.
You both alluded to doctors who have tried to provide a solution for you getting into trouble with their professional bodies. On what basis did they get into trouble with their professional bodies?
It tends not to be the patients who make the complaints; rather, it tends to be other doctors who do so.
My doctor is Scottish and he is called Dr Skinner. He is not an endocrinologist. He started out as a virologist, but he restores people to health. He says, “I’m doctoring. I will treat you by your symptoms first and foremost, because the blood test doesn’t always accurately show what’s wrong.”
We are now getting so good that we can spot people with a problem ourselves. I met my sister for the first time—
I am sorry to interrupt, but on a technical point, it is probably best if we do not name individual doctors.
Right. Sorry.
Does that suggest that there is a genetic disorder?
Yes, there is. That has been proven. A gene has been found with a default in the deiodinase, which can cause a bit of a problem. There are quite a few references to that in various books; Mark Starr refers to it in his book. There is evidence that the condition can be genetic, as well, so there is quite a wide range of reasons for it.
I want to ask about the figure of 20,000 that my colleague Adam Ingram mentioned and the research that you have done. This is probably an unfair question, particularly for Lorraine Cleaver, on the basis that she was seen privately. Is there any health board area in Scotland where diagnosis is not being done effectively? Let me be positive: is there a particular health board where it is being done effectively?
About three months ago, I met the doctor who helped me and said that I was a genuine soul and that the problem was not in my head, and I told him what was wrong with me 14 years ago. He said, “Oh, well. The TSH test wouldn’t have been any good to you.” I said, “I don’t believe you’ve just said that.”
I understand that, but is there—
I am saying: please send them to him in the Lochaber area.
I am sure that he will be delighted to hear that.
There is no evidence that we could find. We could not believe how little statistical data there is on the illness, considering that for every man that it affects, it affects 10 women. It is an extremely common condition. People often think that it is easily treated and that you just take one little thyroid pill a day. It is unfair that it has garnered that reputation, because the British Thyroid Foundation opens its paper on the condition with the sentence:
My question has been answered; it was about the gender-specific nature of the condition. You have said that it is 10 times more common in women.
It is also hormonal. Women tend to bear the hormonal burden, with pregnancy and so on.
Childhood sexual abuse is horrendous. A child who is constantly stressed produces cortisol all the time. Eventually, that knocks the thyroid out and causes the conversion problem. Post-traumatic stress kicks in and it continues throughout their life. The same is true of people who are in war zones. A system that would help such people should be looked at.
Thank you for that point. Do members wish to ask anything else?
As we have no more questions, I thank both witnesses for coming along. Although, at one level, it is quite a technical issue, you have raised the committee’s awareness of the massive problems that the condition causes.
In addition to writing to the organisations that the convener mentioned, perhaps we should write to the Scottish intercollegiate guidelines network, which is the body that is responsible for publishing clinical guidelines for the NHS in Scotland. I do not know whether the committee feels that that would be appropriate.
Certainly.
I agree.
I am concerned that we frame carefully the question that we put when we write to organisations. Given everything that we have heard, not much would be served by their writing back to us to tell us that they do not recognise the condition or that they do not have systems for it. Part of our questioning should be framed around why their approach, as we understand it, has been as it is and what they intend to do about the condition.
The petitioners mentioned that there is best practice in America. Can you perhaps let us know after the meeting the name of that study?
Yes, we can. The top people are willing to speak to the Parliament.
Thyroid UK definitely has a database on that.
Thyroid UK’s advisers are wonderful, so please get in touch with them.
Yes—we mentioned that earlier.
Can I ask the committee something?
Sure.
It is my belief that the national health service in Scotland has always been separate and devolved and that that is nothing to do with devolution in 1999. We have always had our own health service. I saw a discussion in the committee with a lady who has congenital heart defects, and her problem was that the NHS kept waiting for updated or revised guidance from England. I wonder why that is the status quo. When we have a separate devolved health authority, why do we mimic or wait for English guidelines?
There are long and short answers to that. The National Institute for Health and Clinical Excellence is the body that we tend to consider when it comes to the approval of new drugs. In Scotland, we have the Scottish Medicines Consortium, which does that job, too. However, if work has been done on a new pain-relief drug, for example, and NICE has approved it, it is sensible to listen to that UK body. As with education, we had a strong track record of NHS initiatives in Scotland long before devolution, so you are right that there were elements of devolution long before the Parliament was set up. However, that does not mean that we ignore best practice when organisations such as NICE make recommendations.
It says something when NICE does not have any guidelines.
I e-mailed NICE and it replied:
I hope that we will get some answers for you when we write to the various organisations. We will keep you up to date with progress. The petition is important.
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