It is a letter by a member of TPA who wrote a letter to be given to the Scottish Parliament in support of the case of Lorraine Cleaver has before the Parliament at present.
A very, very sad indictment of treatment for th... - Thyroid UK
A very, very sad indictment of treatment for those who are hypothyroid but don't find the benefit of levothyroxine or remain undiagnosed
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Have read this before, sickening and so very very sad. Sadly very understandable. I wonder how many others have been there, or close? I don't suppose there are any records of suicides who were also Hypothyroid? Likewise I don't suppose there are any stats of deaths allocated to heart disease or diabetes that show the patient as having hypothyroidism also?
Thanks you for posting, a reminder to us all as to why we have to keep fighting this mindless insistence that the medics know wha they are doing!
Oh, I think that when they deny us a diagnosis/the right treatment/the right dose they know exactly what they're doing. It's just that their agenda is not the same as ours.
Terrifying to think what you are saying could be true but not all treatment protocol can be due to ignorance! There can't be many diseases that are as neglected as those associated with the thyroid.
Day after day I keep thinking about where I would be now without the help of folk on this forum. Generally, the medical profession is shocking and literally allowed to get away with murder.
Can't disagree. One finnish patient didn't get pregnant until given T3, gave birth to healthy twins but in the eyes of authority it was wrong and doctor got notification. Another patient was given testosterone and her haemoglobin increased still inside the range not even close to upper range and again doctor got notification even though the patient was feeling well.
There seems to be unwritten rule about how to cure patients, no one knows what it actually is.
No, it's an unwritten rule about how to NOT cure patients!
I have said this sooooooooooooo many times. I'm certain there is a conspiracy involved somewhere in this mistreatment of thyroid patients. Your story is tragic but I'm sure, unfortunately, very common.
That's how the UK doctors were treated. Dr Peatfield for instance who has hypo himself resigned his Licence due to being targetted.
Also Dr Skinner wouldn't give in and who had 10,000 testimonials from patients to the GMC. It certainly wasn't patients who complained about him diagnosing upon clinical symptoms and prescribing whatever suited the patient. He appeared before the GMC several times and one of his patients did a calculation of the 'odds' and it was about 4 million to 1 (I cannot remember accurately).
His staff removed the website when Dr Skinner died of a heart attack and patients believe it was the strain of having to defend his method of treating and Dr S also stated that we were in a parlous state due to the deference to a blood test instead of clinical symptoms. Nowadays few, or none at all, know any clinical symptoms but will prescribe 'extras' for the disabling symptoms.
His staff have been collating all of the Research Dr S did with his staff and now need funds to publish.
There were other doctors who lost their licences ,I'm sure so that others would toe the line.
Nowadays not one doctor or endo seems to diagnoses and treat due to the clinical symptoms and we get dosed according to the TSH and T4 alone. Worst of all they have withdrawn NDT and also T3 and the Associations have made False Statements about NDT - in use since 1892 and saved lives, many lives.
Think you are very right greygoose as my son said last year sometime, 'population control'.
Could very well be! But, not very effective, because we die long, slow deaths! Over-dosing us with T3 might be more effective, because we'd all be dropping with heart attacks!
Only those of us who don't need it though!
I have really no idea why the Professionals at the top refuse to believe the patients. There must be more than a couple of patients who complain about feeling unwell. What frustrates us more they do not make any effort and talk down to the patient as if they were gods.
If a few of them had hypo or hashi's another story may be played out and that we get the treatment we deserve.
Sadly hypo/hashi's are too debilitating when left untreated or mistreated, meaning most of us struggle through life and education and cannot achieve our potential. I often wonder what some people would have achieved if they had not struggled with health problems.
I get so annoyed when I hear talk of 'sub-clinical' Hypo, as to me any hypo is hypo...it is not 'curable' and left untreated it is only going to get worse. Maybe if I, and others, had been offered some treatment in the years and decades where the signs were there and ignored as the blood tests were not showing 'overt', maybe our thyroids would have been still able to manage on T4 only.
I do suspect, in my case, that the long term 'mis-treatment' has let to further dysfunction.
I also wonder as to the 'open-ness' of these medical 'scientific' minds that are so adamant that they know all there is to know, when it is clear from all documentation, and ongoing discoveries in genetics etc, that the knowledge out there is questionable and in need of further trials and investigations.
Shaws,
That makes very, very painful and, extremely sad reading.
The harsh reality is, that so many of us, really, truly, understand, because we experience so much heartache, and ill health, trying to get medics to listen, believe, and treat us.
I'm so sorry this lady suffered beyond what she was able to endure. I hope that somehow, someone, somewhere, is using the letter so that medics learn, and patients benefit.
If one (and as many as possible), person is helped, I feel this lady would have filled her mission.
God bless her, and each of us who continue to suffer.
I don't know what the autopsy would diagnose but I don't think any notice was taken of the patient's state of mind which was very clear in her letter. with the reason she couldn't carry on. Being mindful that T3 is needed in the billions of T3 receptor cells.
Dr John Lowe was not the only doctor to state that the rise of blood tests along with levothyroxine was through monetary incentives by Big Pharma to doctors and endocrinologists that even in this present time, they do not state the truth.
The cost to the NHS and patients' lives cannot be equated - through disinterest and think they know better than the patient. Thankfully Doctors like Lowe, Peatfield and Skinner were the last of the 'proper doctors' who had been trained and Dr S stating that nowadays we're in a Parlous Situation due to the deference to a dot on a piece of paper than symptoms. Dr Skinner's supportive staff were shocked at his demise but have since then (about three years) have been collating all of their Research and are hopeful of having it published when they raise sufficient funds. It should shake up the system I hope. What about our daughters in particular and many who have their lives ahead we don't want them to go through the same rigmarole.
First of all; anxiety and depression may indeed be triggered by getting dismissed by health care instead being the original cause of all symptoms. Years of dismissal is equal to domestic violence or any type of bullying. It is same thing, someone you are supposed to be able to trust calls you hypochondriac or lunatic. There is no difference in my mind. It's as destructive.
Second of all; speaking from my own personal experience, if a doctor tells you you are lunatic , in very fragile state of mind you might act like it and adopt the symptoms. You are being lead to believe it is anxiety. Eventually I was told by two psychiatric that I am anxious because I am ill, not ill because I am anxious. None of the symptoms I had at that point were correlating to any psychiatric diseases , one major symptom was allergy type of hives only following after eating certain food.
And third of all ; if anxiety and depression have correlation to low T3 in brain why not treat it with T3. If doctor wants to let them call it mental health disease if it satisfies them. But isn't it better to try T3 instead for example ssri which is said to increase the conversion from t4 to T3. If so , doesn't it prove the cause was poor conversion not mental health issue?
To sum up this all I think dismissal isn't just undermining patients symptoms or their personal understanding of their own symptoms but it's also denying their identity if you understand what I mean. Patient knows themselves but are constantly told their are wrong and their rights are being ignored. Suddenly you are not approved by authorities, losing your livelihood and eventually you might not know who and where you belong to because no one seems to accept your illness. Instead getting proper diagnosis and treatment you end up in junkyard where you are bounced back and forth between different doctors no one wanting to have anything to do with you , talking over you like you didn't even exist. Once the word mental illness has been said the fight gets so hard you have no idea what to do, it's a stigma , it follows you until the bitter end. Even if 5 new doctors said it's not in your head it doesn't matter, the mental health illness statement follows you forever and only that counts.
It's not a surprise people end up killing themselves. If anything, it makes sense in these type of conditions. You have been ignored, dismissed, but worst of all denied the possibility for better life and wellbeing. Unfortunately doctors can then just agree it was mental health disease after all, they were right and patient was stupid not to agree with it. Not even a second they think they had anything to do with it and nothing changes.
You are correct about mental health and it is so simple to test FT4 and FT3. T4 is inactive (or storage hormone) T3 is the only Active one but the most important is ignored. In fact I doubt they know what its purpose is whatsoever. Many doctors lost their licence after the introduction of levo because they still did as they were trained as students, i.e. symptoms and trial of NDT.
They have now withdrawn, without notice, T3 on which many patients had a life. They don't care. Big Pharma has taken the chance to increase cost sooo high it is out of bounds for us to purchase - even privately. What do they do - withdraw the only Active Thyroid Hormone T3. They also withdrew NDT from being prescribed through lies, lies and more lies. In fact it was used safely up until it was also withdrawn leaving no options but levo. If people's lives could be saved after the introduction of NDT in 1892 why remove it from prescribing today.
My goodness,
I think you have hit the nail on the head! Justlina, that account is such a good analysis; that every patient would do well, to give a copy to their medic.
Trouble is, we know, they wouldn't read it because in their opinion, thyroid disease is in the head.
Unfortunately, its all a no win for us, and as you put it so well, a win win for them!
It seems to give them sadistic pleasure to insist it's in our head. But it wasn't that long ago when doctors without hesitation treated people with sadistic methods. I bet some of it comes from sadistic need to feel superior and to humiliate "common people" who are not worthy of doctors. Nowadays when we do not think being a doctor is such a fancy thing must upset some of them very deeply.
And a bit off topic , hysterectomy is one great example of health care still being in dark era. It is still called hysterectomy referring to original cause, to treat hysteria! I find it twisted but pointing out whatever consider women's health is still handled as it's in your head.
As very sad tale; compellingly written and a powerful legacy that one hopes someone with clout really does consider seriously.
I think it all comes down to the legal position of medics/MDs/Doctors, who are legally "untouchable". This has to change. The existing bodies that deal with patient's complaints are useless/outdated. GMC is never an organisation to protect patients. It's not just thyroid, but other illnesses, too, especially autoimmune diseases, people spend 10 years or longer whilst they watch relationships, jobs, everything going down the drain. There is so much BS/Horse manure, casually dished out by doctors in healthcare which is so untrue. I hate to say this but this lady is probably a tip of the iceberg.
The problem lies with those at the top who are protected by like minded beings....they set the rules, pull the strings and appear to care nothing for either those who suffer or those who, totally helpless, watch this happen to their loved ones. If they did care then things would surely be different.
Despite being faced with so much compelling evidence they continue to spew out ill informed and insulting rhetoric as empty and meaningless "reasons" - aka excuses!
If (for example) one of the their cronies fell into the Thames in front of Westminster would they sit back and consider a life belt as an unnecessary option! I doubt it! Yet, to us, correct thyroid treatment is that life belt and it is being withheld, with devastating consequences.
We often blame GPs but they are not provided with the tools/education to diagnose/treat thyroid (and other illnesses) If/when they do self educate they cannot use their new found knowledge because their hands are then firmly tied behind their backs by regulations which if breached could cost them their livelihood. There are good doctors out there ....
Without TUK who can say how many more of us might have found ourselves in the same position as this poor departed woman...and how many others are suffering in silence or
have just slipped away quietly.
It beggars belief!
The medical establishment is still in the equivalent of a radical mastectomy era, when it comes to hypothyroid patient care.
This whole discussion has been illuminating, chilling but very necessary. Let's hope this lady and I fear others in a similar position have not died in vain.
One would have thought that the nhs would want to diagnose and treat hypothyroidism properly as it would save them millions of pounds.
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Somebody, somewhere is getting rich from all of this. It's a racket.
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