Hello to all the wonderful experts and hoping you can give me some relevant links to email to my MP in support of prescribing T3 again on the NHS.
I attended a meeting today where my MP was present and asked her to support the battle to get T3 prescribed on the NHS as it was causing much distress and financial cost to many thousands of thyroid sufferers, myself included. She's a doctor herself and seemed interested but she thought the evidence from 'experts' said that it was not effective or necessary. So frustrating, but in fairness she did say if I could email her details of evidence, she would look at it.
The problem I have is that I am not great myself on understanding the complexities of this horrible disease but I do know that since I have been taking NDT I am feeling quite a lot better. I have also gone gluten and dairy free since having a test for alergies and that has helped a lot.
Any links would be wonderful.
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Todd
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You should check out the posts on the Canadian site thyroidpatients.ca . Their T3 campaign is being supported by an MP there with a lot of similar issues as you have in the U.K.
In this patient population, the reduction in bone mineral density due to thyroxine is small. It is unlikely to be of clinical significance and should not on its own be an indication for reduction of thyroxine dose in patients who are clinically euthyroid
Combination T4 and T3 or NDT treatment improves quality of life
For patients undergoing either therapy, we did not identify additional risks of atrial fibrillation, cardiovascular disease, or mortality in patients of all ages with hypothyroidism.
Research clearly shows 20% of patients with no thyroid function cannot recover full health on Levothyroxine mono therapy
Compared to euthyroid controls, one fifth of the athyreotic patients treated with levothyroxine monotherapy had abnormal values of either FT3 or FT4. Moreover, an abnormal thyroid-pituitary feedback was observed in these patients, with a reduced sensitivity compared to euthyroid controls.
......customary to begin treatment with thyroxine in patients with symptomatic ischaemic heart disease in a dose of 25 μg daily, increasing by 25 μg increments every three weeks until a dose of 100 μg daily is reached. After a further six weeks, serum free T4 and TSH should be measured and the dose of thyroxine adjusted to ensure that free T4 and TSH concentrations are in the upper and lower parts respectively of the reference range. It should be exceptional not to achieve full replacement treatment...
.....Moreover, there is no evidence, despite the findings of the Framingham study, that a suppressed serum TSH concentration in a patient taking thyroxine in whom serum T3 is unequivocally normal is a risk factor for atrial fibrillation.
Participants using LT4 had higher serum total and free T4 and lower serum total and free T3 than healthy or matched controls. This translated to approximately 15-20% lower serum T3:T4 ratios in LT4 treatment, as has been shown in other cohorts. In comparison to matched controls, LT4-treated participants had higher body mass index despite report of consuming fewer calories/day/kg; were more likely to be taking beta-blockers, statins, and antidepressants; and reported lower total metabolic equivalents
TSH levels showed a statistically significant decline postprandially in comparison to fasting values. This may have clinical implications in the diagnosis and management of hypothyroidism, especially SCH.
This is the only retrospective study reported to use long-term (mean 27 months) thyroid replacements with combination therapy and to compare between the two forms of therapy: synthetic and natural. For patients undergoing either therapy, we did not identify additional risks of atrial fibrillation, cardiovascular disease, or mortality in patients of all ages with hypothyroidism.
From the above data, one can estimate that slightly over 3% of the population of England were prescribed regular levothyroxine during 2007[2]. This is corroborated by a prevalence rate for hypothyroidism of 3.01% in Tayside, Scotland during 2001[3].
Population of UK 65.64million in 2016 - 3.01% is just under 2 million people
If 20% of 2 million patients can not make full recovery on Levothyroxine alone, that is a large number of UK population, around 90% are female
In summary, patients on long-term T4 with either an increased serum TSH (>4 mU/liter) or a suppressed TSH (<0.03 mU/liter) have an increased risk of cardiovascular disease, dysrhythmias, and fractures when compared with patients with a TSH within the laboratory reference range. Patients with a low, but not suppressed, TSH (0.04–0.4 mU/liter) had no increased risk of these outcomes in this study.
If an NHS endocrinologist says you have clinical need you should be prescribed initial 3-6 month trial via endo's hospital pharmacy. Assuming trial is successful then ongoing care and prescribing is transferred to your GP
Finding the right endocrinologist is key to getting treatment
Email Dionne at Thyroid Uk for list of recommended thyroid specialist endocrinologists who will prescribe T3
When my mp asked if I had proof, I said 'I am my proof, look at my medical records and see how ill I was, how many tablets for symptoms I was taking. The symptoms and medications were no longer necessary once on T3. My endo also agreed and went on record that I would need T3 for therest of my life.'
That was sufficient for my mp and the local ccg to reinstate my T3 on nhs.
Well done that you got your T3 reinstated. Sadly I never managed to get an NHS prescription even though my blood results clearly showed that I was not converting. Great that you had a supportive Endo, mine played the party line.
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