seeing endo next week about t3 prescription.

[katherine107]

i have been on t3 for 5 years through a lovely endo at the hospital. he said people benefited from taking t3. he left and a new one came last december who i saw then and wanted to stop it. i pleaded he would keep me on it as felt so much better but wanted me to have thyroxine. he did agree for me to have it for another year and be reviewed in a year but did say he doubts if i can continue with it as dangerous for too long. . i am seeing him next week . can anyone help me . what should i say to him etc . i am also hoping to move soon. that is another issue as different county.

[Caalineundy]

Hi, I have had the same from my GP. Its all down to cost. Keep fighting I have and its still being prescribed.

[SeasideSusie Remembering]

Ask why it is dangerous. Ask for evidence.

Mention that there are patients who can't take Levo for various reasons and who can only take T3.

[katherine107 in reply to SeasideSusie]

he said causes heart problems and ostoporosis

[SeasideSusie Remembering in reply to katherine107]

Ask him to provide copies of the research that proves that.

[diogenes Remembering in reply to katherine107]

Oh dear! I'm a healthy (just about) elderly person whose body from birth has used T3 made from T4 to keep me going. TSH simply controlled my thyroid to make T4. I know I'm right in the middle of the normal ranges for FT4 and FT3. So by the endo's arguments, because of my T3 I should be getting heart problems and osteoporosis as T3 is "dangerous". If someone loses their thyroid and can only return to a normal FT3 for them by taking T3 (and say they achieve an FT3 this way the same as mine), then if this FT3 is not dangerous to me, how can it be dangerous to them. The fact that T4 isn't being used for conversion in therapy, as opposed to T4 conversion to T3 in health is absolutely irrelevant. The source of the T3 simply doesn't matter, given careful use of T3 in therapy because of its greater potency. Statements that T3 causes OP and AF are by this token utter nonsense.

[vocalEK in reply to katherine107]

This is a report on a very recent study on using combined T4 & T3 treatment. Both the synthetic form (e.g. Synthroid + Cytomel) and natural (NDT) treatment were tested. There were no serious adverse health effects. "Our first observational study examined the role of combination therapy for 6 years in improving quality of life in a subset of a hypothyroid population without adverse effects and cardiac mortality."

ncbi.nlm.nih.gov/pmc/articl...

I find it extremely sad (and infuriating) that various societies/organizations insist that T4 treatment only is best for everyone. For 80%, it is, but the remaining 20% should just go to the Devil?

As for the OP, we have a saying in the computer world: "If it ain't broke, don't fix it." Unfortunately you, not the doctor, will be the one to suffer ill health as the cost of indulging his fears.

[shaws Administrator]

Oh! my heart drops when I read statements that the Endo has made to you i.e.

"he did agree for me to have it for another year and be reviewed in a year but did say he doubts if i can continue with it as dangerous for too long".

What RUBBISH is this statement. He knows nothing about what liothyronine does in the body and many patients cannot improve on levothyroxine (as I am sure you know). They have absolutely no idea the difference of a patient's clinical symptoms being relieved or increasing when not on the correct thyroid hormone for us, individually.

He also knows nothing about Thyroid Hormone Resistance which means that our prescription should be for T3 alone as we cannot convert levothyroxine (T4 and inactive) into liothyronine (T3 and Active hormone). Is he aware that there are no T4 receptor cells? Levothyroxine is an inactive hormone and it has to convert to liothyronine (T3) and we have millions of T3 receptor cells that need T3 in order for our body to function normally.

You can tell him that there is a Petition before the House of Lords and one Lord in particular - Lord Hunt - stated:

"No doubt the Minister will point out that they apply only to branded medicines, while the medicine that I am dealing with tonight is a generic medicine. It is a device to enable us to debate this important point. However, the fact that the Government brought the legislation to Parliament and are bringing the regulations here shows that they understand that there was a need to deal with abuse in the case of branded medicines. One of the questions I want to put the Minister is: what about generic medicines? How do we ensure effective early action when it becomes likely, or obvious in fact, that some companies are taking the NHS for a ride?

Liothyronine—or T3, as I will call it, because it is a lot easier to pronounce—is the subject of my Motion. As many as one in 20 people in the UK is affected by thyroid disease. The symptoms of an underactive thyroid, which is the most common condition, are serious and ​require daily medication. Most patients resolve their symptoms with the standard medication, levothyroxine, otherwise known as T4, but there is a subgroup of patients for whom T3 can be an effective option.

T3 was de-branded in 2007, at which point its cost started to increase. Normally, after de-branding, the cost comes down. By July 2017, the cost had increased by a massive 6,000%. The price per pack had risen from £4.46 to a massive £258 in 10 years. Whereas prices on continental Europe range from 2p to 26p, the NHS pays more than £9 per tablet—this is a tablet that needs to be taken daily...........................

and

A final decision is still awaited. My understanding—I should be grateful if the Minister could confirm this—is that no intervention will be taken by the Department of Health until the final decision is made. Pace our previous debate about why Governments sometimes hold up making decisions while inquiries are ongoing, that reflects some of the problems in Gosport, which we are now seeing in a totally different area.

The trouble with the delay is that patients are suffering. Because of the high cost, in 2017 NHS England ran a consultation under the title Items which should not Routinely be Prescribed in Primary Care: A Consultation on Guidance for CCGs. T3 was included in the list to be considered as an effective product subject to “excessive price inflation”. The issue was not the effectiveness of the drug; it was the fact that it was costing so much money.

There was a lot of consultation, including submissions by the British Thyroid Association and Thyroid UK that T3 should continue to be prescribed in primary care. However, NHS England’s recommendation was:

“The Joint Clinical Working Group therefore recommended the prescribing of liothyronine for any new patient should be initiated by a consultant endocrinologist in the NHS, and that de-prescribing in ‘all’ patients”—

in other words, patients who were already on T3—should not automatically occur,

“as there are recognised exceptions. The recommendation would therefore be changed to advise prescribers to de-prescribe in all appropriate patients”.

So the consultation led to a change in the guidance.

But you have to read the guidance very carefully to understand what it is saying, and it is clear that, to put it at its kindest, clinical commissioning groups have perhaps misunderstood what the guidance stated. That has led to many of them informing clinicians in both primary and secondary care to withdraw T3 from all patients, some of whom have been prescribed it for years, and not allowing them to initiate a prescription, or to offer to refer it to an endocrinologist, as the latest guidance states that they should.

This is causing many patients a great deal of distress. It is making them ill again and impacting on their social and mental welfare. As the Thyroid Trust has ​pointed out, that is compounded because many GPs are not following treatment guidelines to fine-tune the dose of the standard medication for these conditions or to refer patients to see a specialist if well-being cannot be restored in primary care.

Where T4 is not working, it is important that T3, in combination or in its own, can be prescribed. Some patients are appealing against the decision of their CCGs, but this is daunting for an individual patient to do. I have had one description today, who said: “Applying for T3 is like wading through treacle with your legs tied together”. What is particularly difficult for them is that the criteria for being an appropriate patient have not been listed. If you are appealing against a decision by a CCG, what chance do you have?

We know that at a meeting with NHS England fairly recently, it was admitted to patient groups—Thyroid UK and the Improve Thyroid Treatment Campaign—that what happened was not its intention; its intention was to reduce regional prescribing variations. Both organisations have asked for further guidance for CCGs whereby CCGs understand what they should be doing.

In a debate in the other place and in the noble Lord’s Answer to me, Ministers have said that the South Regional Medicines Optimisation Committee has been considering the issue further and that it will issue a statement in due course. Has this august body issued such a statement? You can find this organisation on the web. It is not very transparent. At its January meeting, the matter was discussed and the minutes of that meeting are on the web. The papers have not been made available. There was a further meeting in May when this matter was on the agenda, but the minutes have not been made available, so the latest we have is what happened in January.

The list of members who attended the January meeting is there, and it is noticeable that 21 professionals attended the meeting with one lay member. Yet the terms of reference of these committees is to look at the outcome of medications for the benefit of patients. It is clear to me that it is a rationing body. Let me take one example. We already have guidance, but the committee was most taken by the fact that a sub-part of the south west had produced its own guidance. Why is a subgroup of the NHS producing its own guidance when guidance is nationally based?

Patients are left in a hopeless position. It is clear that T3 should be initiated by an endocrinologist, but not what happens afterwards. That is being left for CCGs to work out for themselves, often to the detriment of the patient. Some endocrinologists are saying that they cannot prescribe because the CCG has said no. Some are prescribing, but patients have to visit them for their prescriptions thereafter. Some are trying unsuccessfully to pass care on to GPs, but GPs are saying that they cannot take over care without CCG permission. It is a Catch-22 position.

Some clinicians are helping patients by giving them private prescriptions, but these are expensive. The Brighton and Sussex University Hospitals NHS Trust is informing patients that their only option is to obtain the drug privately. For an NHS body to advise patients as such goes against the whole ethos of the NHS. I must say that I am very surprised at the trust doing so.​

I received details yesterday through Thyroid UK of a patient who is looking for a price to purchase T3 privately. She contacted Pharmacy2U and asked for a price for 56 T3 tablets. From four suppliers, only one could supply and that price was £774. That was for 56 tablets, one a day.

The above is an excerpt from TUK:-

thyroiduk.org.uk/tuk/campai...

Caalineundy

[Lovecake]

I have a similar issue. I see an endo privately, get the T3 by private prescription (send to Germany or I could not afford to be on it). Then my GP freaks out over my low TSH level. She insisted on another test 2 weeks ago. There was no change to the TSH 0.05 (.55-4.78) my FT3 level has dropped by 0.3 in 4 months. (Last test was 5 (3.5-6.5) She hasn’t contacted me (yet). Her concern was that I would have long term health issues.

I take 75mcg levo and 10mcg T3 (usually, occasionally 15 if I think I’m going to need it) so not exactly overdoing the T3 part.

I have noticed that the ref ranges have changed up and down in the last 6 years. I think they’re trying to say we’re ok and confuse the hell out of us.

Don’t give in, and keep your health with your T3.

[vocalEK]

Does your Endo understand that the role of TSH is to send a signal to the thyroid gland to produce more thyroid hormones? If she tests both FT3 and FT4 and they are in range, then what excuse does she give for the dire need for higher levels of the signal (TSH) to the thyroid to produce more thyroid hormones?