T3 prescription success!!! There is hope!!! - Thyroid UK

Thyroid UK

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T3 prescription success!!! There is hope!!!

Hashi-hacker
Hashi-hacker

Hi all,

After a 3 month wait, my GP has been allowed to prescribe me T3 on the recommendation of an NHS endo that I saw privately, for a 3 month trial. I am in Scotland and am absolutely delighted that this has been allowed to happen given how difficult the general climate is and hope that gives some of you hope if you are in a similar situation.

My question to you is how do I go about splitting a 20mcg tablet into 5mcg doses sensibly? I've been prescribed a (low) starting dose of 2 x 5mcg daily with a corresponding drop from 100mcg to 75mcg of levo.

Thanks

13 Replies
oldestnewest

Congratulations. They cut easily with a tablet cutter. I find the Safe & Sound cutter the easiest to use... and you do get better at it with practice! I cut along the dividing line first then at 90 degrees to the first cut.

Congratulations, possibly a I should move to Scotland !

shaws
shawsAdministrator

The fact that some MPs in the Scottish Parliament supported the prescribing of thyroid hormone replacements other than levothyroxine and the Leader of the House has hypothyroidism and they also had a Petitioner i.e. Lorraine Cleaver and her awful experience that they agreed that those who need a thyroid hormone replacement other than levothyroxine should get it prescribed.

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

DippyDame
DippyDame in reply to shaws

The problem remains that an endo (in Scotland) has to first diagnose a clinical need for T3 ...and that isn't always easy to achieve.

Well done Hashi-hacker and good luck. I hope all goes well with the trial.

shaws
shawsAdministrator in reply to DippyDame

It wont be easy to change attitudes of Endos who've been told only to prescribe levo in the past but those who have found that providing some T3 or T3 alone has been helpful will be willing to give a patient a trial.

Considering, too, that those who do fine on levothyroxine will not have a need to alter their prescription or see an Endocrinologist.

DippyDame
DippyDame in reply to shaws

Sadly not every endo has an open mind and given that each of us has different/complex needs which often cannot be met without first experiencing a trial of T3 it falls on each endo to use his own judgement regarding need.

There the problem lies.....many will not be persuaded, so an uneven playing field remains and patients continue to suffer. It's not good enough that just a few enlightened medics offer T3.

If that judgement is to refuse T3 then it's like putting the cart before the horse....there will be no way of accurately assessing either the patient's need for T3 or consequently an optimal dose of hormone replacement

We know that it can take a very very long time to find the optimal dose - it has taken me well over a year - so for the small percentage of patients in need of T3 a three month trial may or may not be long enough. Endos may be setting some patients up for a fall....possibly without realising it!

For some it might be enough but that still leaves the rest falling through the net and remaining ill.

My endo concluded that my self-medicating with high dose T3 would not be what he would advise but then said that since it seems to be working I should perhaps maintain the status quo.. I still buy my own T3...it leaves me in control. His preferred treatment would be a return to levothyroxine which made me ill in the first place!

Regarding Lorraine Cleaver, this is what she copied (wrote) to the Thyroid Petition Scotland FB page. She despairs....

"3rd June 2019

Dear Convenor and members of the Petitions Committee,

The Minister for Public Health and Sport references guidance on Thyroid Testing produced by the Scottish Clinical Biochemistry Network in March. To say these are a disappointment would be an understatement and a kindness. They merely parrot the same tired old ideas and quote only three references, two of which are twenty eight years old and one which is the old archived, poor quality 2006 UK guidelines which stated at that time the evidence was of a poor standard! Nothing has changed, these guidelines take no account of the wealth of new evidence and, frankly are an out and out disgrace as a piece of work. If that’s what the hard work of the petition committee and everyone involved yields then I see no point in the petition remaining open.

Sincerely..."

We must, however, continue to be positive but I doubt much will improve until the decision makers pull their heads out of the sand and open their eyes and ears.

Sorry.....ranting again I'm afraid but I share Lorraine's concerns.

shaws
shawsAdministrator in reply to DippyDame

We're entitled to rant when those of us who do not improve at all on levothyroxine and then told that's all there is, it comes as a shock to find out that, yes, there are options but now removed from being prescribed by those who we'd expect to know better.

By that I mean the BTA et all have removed NDT (through False Statements about it) especially when it was used since 1892 (in different forms) and from then on people didn't die a horrible death. Many have to source their own and some may not be able to afford to do so.

Some of us cannot improve on synthetic hormones and others can and may improve with the addition of T3 to T4. I was always unwell on T4 even though 'bloods' looked fine. but blood tests do not tell the whole story, i.e. replacement hormones are supposed to return us to good health.

Brilliant news!! Very pleased for you!! My daughter actually gets 5s prescribed on NHS in South Lanarkshire.

Hashi-hacker
Hashi-hacker in reply to JMo1

Do you know what the name of the 5s is? My GP said whatever she was looking at would only allow her to prescribe 20s. You'd think it would all be the same!

JMo1
JMo1 in reply to Hashi-hacker

They are 5mcg SignaPharm. We have a good pharmacist so not sure if that helped.

Hashi-hacker
Hashi-hacker in reply to JMo1

Thanks, I'll pass that onto my GP x

I too was prescribed T3 last year from endo (Im in Scotland too) i was given 20s to split twice a day, but after week or two of doing that and not very successfully I now take the 20 in one go in the afternoon, and 150 levo first thing in the morning. This seems to work for me.

Congratulations! I self source 25mcg pills but take 3/4 each day. I use s scalpel, which I bought from Amazon which works very well. Btw I was also feeling tired in the evenings at first but I decided to try single dosing instead of splitting it and it removed the evening fatigue. Keep a eye on the Levo too as the conversion used is not set in stone - I didn’t reduce at first but after months of tweaking I decided 12.5mcg Levo reduction for 18mcg liothyronine is what works for me.

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