Thyroid UK
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Scottish Thyroid Support Needed URGENTLY

All it takes is a quick e-mail to your MSP asking them to support Motion S5M-0737! 🙏🏼❤️

Elaine Smith MSP has tabled a motion in the Scottish Parliament about the shocking state of affairs re T3.

NHS Lanarkshire recently issued guidance stating they do not recommend the prescribing of T3. Many others already stopped and the rest are likely going to!

It would really help push this motion if you could ask your MSP to support Elaine by signing it on your behalf.

Link to the motion:

parliament.scot/msps/curren...

Motion States:

"That the Parliament notes petition PE 01463, which has been under consideration by the Public Petitions Committee since 2012 and highlights the problems with inadequate diagnosis and treatment of thyroid conditions; understands that at least 2% of the population will suffer from hypothyroidism in their lifetime, with some doctors believing that the rate is much higher; recognises that the chronic condition affects mainly women (95%); accepts that, in the 1980s, the standard treatment of Dessicated Thyroid Hormone (DTH) was replaced by synthetic thyroxine (T4); notes that T4 is a prohormone that must be converted to T3 (liothyronine), which is the biologically active hormone; understands that the Royal College of Physicians officially recognises that 5 to 10% of patients on T4 do not do well, a figure believed to be substantially higher by others in the thyroid field; takes account of the fact that many patients are wholly reliant on T3 or combination therapy for health and wellbeing; expresses concern that some health boards, including NHS Lanarkshire, are, it believes, issuing controversial guidelines that imply that GPs can no longer prescribe T3; considers any such instruction to be a breach of their duty of care to those relying on T3 to live, discriminatory in terms of gender and potentially in breach of Article 2 and Article 14 Protocol 12 of the European Convention on Human Rights, and notes calls for health boards to ensure that patients continue to receive T3."

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If you look at the pinned post on the r/hand side you will see that Thyroiduk.org.uk has launched a campaign and if you haven't signed you can do so. These are two excerpts from the following link:

1. Ever since PrescQIPP published their Bulletin 117 (DROP List) and Bulletin 121 (Switching liothyronine (L-T3) to levothyroxine (L-T4) in the management of primary hypothyroidism) showing exactly how much liothyronine is costing the NHS, Clinical Commissioning Groups have been stopping patients from being prescribed T3 and doctors and endocrinologists have been withdrawing patients' prescriptions of T3. Thyroid UK believes this to be outrageous and unethical.

There are several aspects to our campaign and we need your help.

2.We are aware that there is a possibility that the decision to withdraw T3 from the prescription list has already been made despite the consultation not being finished and a proper legal decision being made. Please bring this to the attention of your MP too. Thyroid UK is in touch with the media and we hope that a big story would bring this to the attention of the decision makers.

healthunlocked.com/thyroidu...

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Shaws - do you know how specifically TUK is able to support the Scottish Thyroid Patient?

I know the NHS Consultation is for NHS England only. The issue is clearly affecting other countries in the UK.

It would be really awesome to see how TUK as an organisation that represents the entire UK is able to challenge the Health Board associations in Scotland too.

Any thoughts? X

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I'll alert lynmynott to this post.

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Thank you. Would love to get involved and have been making use of the TUK T3 Campaign templates etc but often have to adjust to make suitable for Scotland which is why I've asked the question xxx

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lynmynott was present at the Scottish hearings and all of us on this forum put in our own experiences and TUK did the groundwork for the Scottish Parliament.

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And is there anything that I can do to help with any of that side of things? Share my story? Contact anyone? Attend any meetings or even just to assist in campaigning TUK's plight in the Scotland in specific?

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You can contact Lyn.mynott@thyroiduk.org.uk and/or Lorraine Cleaver who has a Facebook page.

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Thanks

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Excerpt 1 refers only to a diagnosis of primary hypothyroidism.

In my opinion this needs further clarification as people like me who were initially diagnosed with primary hypothyroidism (2011) then subsequently diagnosed with Hashimoto thyroiditis (2016) are caught between a rock and a hard place. For me, these are two distinct illnesses, therefore I welcome the opinion of others in this matter.

In my case, my antibodies are now within normal range but as most of you know, this can change very quickly.

My questions are:

When antiobodies are within normal range, does the diagnosis of Hashimoto revert back to the initial primary hypothyroidism and therefore liable to consideration in excerp 1.

Does a diagnosis of Hashimoto take precidence over a diagnosis of primary hypothyroidism and exclude these treatment regimes from entering the cost analysis? If so, when antibodies are within normal range, is treatment with L-T4 and/or L-T3 , NDT, necessary?

If the only diagnosis one has is Hashimoto, are these patient' treatments with L-T4 & L-T3 considered in the statistical cost analysis which underpins the motion to withdraw L-T3?

Are the calculations for this cost analysis flawed?

Today is a good day and I am starting to think ... perhaps a direct result of the addition of L-T3 to my treatment regime?

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I also have Hashimoto's as do 97% of people diagnosed Hypothyroidism.

So for me ... regardless of it being 2 different things the treatment guidelines need to apply to both in the case where Hashimoto's has progressed to the point of thyroid dysfunction.

I agree Hashimoto's treatment protocols require better definition and to be fleshed out more without a doubt.

For now though the pressing matter is about sustaining a quality of life and T4 monotherapy is not the answer.

If antibodies are in normal range - does it revert to Hypothyroidism?

My opinion - no. Once Hashimoto's, always Hashimoto's (even in remission).

HOWEVER doctors in NHS typically don't treat Hashi's anyway. They treat the thyroid dysfunction so makes no odds at the moment.

Is T4, T3 or NDT treatment necessary if Antibodies in range?

Depends at what stage the auto immune attack has progressed to. If thyroid function remains normal then meds not always required. If thyroid already dysfunctional before Antibody reduction then likelihood is meds must remain in play (it is possible but extremely rare for the thyroid to regenerate and return to normal function).

Are Hashimoto's patients considered in the motion if that's their only diagnosis?

I'm guessing but I'd say no unless they are at a stage where thyroid function is impaired. Honest answer I don't know.

This motion is to stop the imminent and very current issue of T3 Withdrawal in Thyroid Treatment. It does not aim to address the entire treatment guidelines of thyroid disease in all its forms because it would not just be Hashimoto's that needs included at that stage - thyroid cancer, post thyroidectomy and therefore Graves and Hyperthyroidism would also then need included.

However the NICE guidelines are being re-scoped this week and over the next few months and hopefully these points will receive full coverage there in those meetings where the forum is correct.

This MSP's immediate desire is to stop T3 Withdrawal from patients who need it regardless of what their thyroid impairment is.

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Thank you Pamela0106 ,

I agree with you that treatment guidelines need to reflect both primary and Hashi where dysfunction is obvious, therefore in my mind it is crucial that the wording in this excerpt be ammended to reflect potential users of L-T3 for thyroid dysfunction and not just primary hypothyroidism.

If according to yourself and Clutter , 90-97% of hypothyroid cases can be attributed to Hashi, then according to excerpt one, they are excluded in the cost analysis as only primary hypothyroidism is relevant. This is a serious flaw in calculations if this is the case?

"This MSP's immediate desire is to stop T3 Withdrawal from patients who need it regardless of what their thyroid impairment is."

This is a noble cause, however, in tabling a motion which only refers to primary hypothyroidism, is a waste of time and effort. The MSP should in my opinion pick the figures and wording apart because the cost of treating primary hypothyroidism (<10% of cases if the remainender are Hashimoto) with L-T3 should be minimal; if this is to be believed. Obviously, the fact that the costs to the NHS are reported as substantive means that probably all patients receiving treatment with L-T3 have been included in the analysis and not just primary hypothyroidism. Therefore, in my opinion all diagnosis where L-T3 was prescibed and included in the numbers should be reflected in the words of the excerpt.

"HOWEVER doctors in NHS typically don't treat Hashi's anyway. They treat the thyroid dysfunction so makes no odds at the moment."

Exactly, they treat the thyroid dysfunction! Which is why it is so important to change the wording from primary hypothyroidism to thyroid dysfunction or simply hypothyroidism. It does matter, it is of great importance. If for example the NHS decide to treat those with primary hypothyroidism with LT3 if needed but not those with hypothyroidism secondary to Autoimmune thyroiditis, then many of us would suffer.

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I hear you and I think we are in agreement in all honesty.

The point, however, is that Hashimoto's in itself does not need medication until such times as the thyroid is impaired. It's only when hypothyroidism occurs that hormone replacement is required therefore in my own opinion the motion is fine as it is because at that point the patient is recognised to have primary hypothyroidism.

It doesn't matter really at this time - we are really just debating (in a good way) the definition of terms.

Ultimately if thyroid function is impaired where hormone replacement is required it is seen to be primary hypothyroidism regardless of Hashimoto's being the cause. So motion statement still applies.

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I am sorry, I disagree with your last paragraph.

As someone diagnosed with primary hypothyroidism in 2011and treated with mono therapy L-T4 unsuccessfully, I already knew that I needed something else to treat me. In 2016, my symptom pattern changed from hypo symptoms to a mixture of both hypo and hyper symptoms. My ultrasound and blood work demonstrated evidence of Hashimoto and it was only with the help of T3 that I can honestly say that things started improving.

My diagnosis however, was changed from primary to Hashimoto hypothyroidism even though the root cause in my case was not discovered. My antibodies were normal and my ultrasound did not show any evidence of Hashimoto at the time.

Hashimoto is fast becoming synonimous with "you did it to yoursel, it is self inflicted ". This can result in negativity similar to that felt by patients who smoke, are obese or drink alcohol to excess. However, not those participating in dangerous sports. Self inflicted illness costs the NHS an enormous amount of money and while I agree that there are measures we as patients need to take to improve our own situations, we need to be careful not to be labelled and put on the pile where we are not a priority. This is why wording and terminology at this stage is so important. If we want T3 to help improve our quality of lives, then we need to fight to include all cases of thyroid dysfunction not just primary hypothyroidism.

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I think my point still stands and actually agrees with you - you needed T3 but only after Thyroid was impaired and was in Hypothyroidism status. This is what the motion covers.

Regardless of when the Hashimoto's was discovered it is not treated until it impacts thyroid. This is not right in my opinion but is sadly fact.

You call it Hashimoto's Hypothyroidism and I agree with that. But they believe it's Hypothyroidism regardless of whether preceded by the word primary or any other word.

The motion seeks to keep T3 for people who have hypothyroidism no matter how it was caused. That's all that's important in this stage.

Elaine is not a doctor nor a medical guideline expert. She seeks to keep T3 for those who need it and has done more to try than most other government officials or medical professionals. It's as simple as that. Once T3 is safe then I concur entirely we should be pushing for the recognition of difference in terminology and condition definitions.

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My thyroid was impaired in 2011 when I had goitre and hypothyroid crisis, at that time only levothyroxine was offered. My thyroid was well and trully dysfunctioning (hypo) prior to my Hashi diagnosis in 2016 and it wasn't until 2017 that I convinced tge endo to add T3.

I called it Hashimoto hypothyroidism because that's when the T3 was needed, obviously Hashimoto hyperthyroid status is a different matter.

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Mauschen,

T3 is suitable for all types of hypothyroid dysfunction but not all types of thyroid dysfunction ie it is not suitable for hyperthyroidism.

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Obviously!

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Mauschen,

Primary hypothyroidism = failure of the thyroid gland to produce thyroid hormone. Primary hypothyroidism is diagnosed by high TSH. Autoimmune thyroiditis causes the majority of primary hypothyroidism. Hyperthyroid patients who have thyroidectomy or RAI will develop primary hypothyroidism.

Secondary and tertiary hypothyroidism (central hypothyroidism) patients usually have healthy thyroid glands which are not producing sufficient thyroid hormone due to lack of TSH stimulation caused by pituitary dysfunction or hypothalmic dysfunction. At diagnosis TSH will be low-normal with low FT4 &/or FT3.

Autoimmune thyroiditis, primary hypothyroidism and central hypothyroidism are treated with thyroid hormone replacement, usually Levothyroxine in the UK. The type or cause of the hypothyroidism doesn't determine the treatment or that a patient will do better on Liothyronine or NDT instead of Levothyroxine.

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I know all of this clutter.

My point is that the wording of the except does not reflect which patients require treatment other than those with primary hypothyroidism therefore, the result, good or bad, will only pertain to that group, namely, those with primary hypothyroidism.

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Mauschen,

The motion is asking that Liothyronine is not withdrawn. It is not asking that only patients with primary hypothyroidism should be treated with Liothyronine.

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I know that too. My point is that when we fight for T3 not to be withdrawn, it should not be withdrawn from anyone receiving treatment with T3 whether it is prescribed for primary or Hashimoto hypothyroidism or any other cause of dysfunction.

It will come back later to bite us in the ... if we don't pick up on the finer points now.

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I hear you. I agree completely. But Hypothyroidism is Hypothyroidism no matter what word precedes it. I'm doubtful that level of criticism in terms would happen if Hypothyroidism in any form can be proven but no harm in pointing it out. Why don't you write to your MSP making that point whilst you ask for the motion to be supported too?

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I have done Pamela and have signed the petition

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Mauschen,

There is no cure or treatment for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

Once you have a confirmed diagnosis of autoimmune thyroiditis (Hashimoto's) the diagnosis doesn't change when antibodies fluctuate above and below the range.

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Thank you clutter, I know what Hashimoto is and how to try and stabilise it. My questions were aimed at challenging the wording of the excerpt, demonstrating what this means for someone like me who was diagnosed primary hypothyroidism for 5 years before Hashimoto's. And not the other way around ; which is more common. In other words, Hashimoto's did not cause my hypothyroidism.

If the motion wins favour, it will only do so for those with a diagnosis of primary hypothyroidism. This scenario would allow my doctor to choose whichever diagnosis she likes best. Primary hypothyroidism and I get T3, Hashimoto and I don't ... do you see where I am coming from?

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Anyone get any joy in writing to MSP’s on this? X

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