T3 in the Highlands

[Pjgilroy]

If there is anyone who is on T3 25mcg and lives near Inverness, Scotland, would you please message me. I have a question about availability. Thanks

[Lalatoot]

I am about to start t3. Have been prescribed it by the endo. I am in moray

[littlemo76 in reply to Lalatoot]

Are getting it with levo or T3mono? They have refused me mono.

[Lalatoot in reply to littlemo76]

I am getting it with levo. They would not consider mono as t3 thought to be too volatile.

[littlemo76 in reply to Lalatoot]

Yes, i went to town on new endo spouting rubbish, with no actual evidence. Im self medicating on t3 mono. Been n tried combo. Had high rt3 n felt just as bad. The endos are waste of time up here. Im going to have a heart attack at 50 aparently! Except iv no heart palps shakes low bp etc on t3 mono. They wnt listen!

[shaws Administrator in reply to littlemo76]

p.s. in UK I believe T3 is in 20mcg and not 25mcg.

[shaws Administrator in reply to Lalatoot]

It wont be too volatile on its own as I take T3 only. I've read that research has shown that a combination should be on a 3:1 or 4:1 basis.

[Hidden in reply to shaws]

I am interested in your comment on the 3:1 or 4:1 basis .

On 100/75 mcgs Levo ( alternate days) would that indicate a need of 20 mcgs of T3.? Sometime ago,my T3 was raised to 20 mcgs for one month and then reverted back to 10mcgs. I haven't felt well since. Could this possibly be a reason why?

If so I will raise my dose to 20mcgs again to see what happens and then consult my GP and Endo about it.

At the time,I was left wondering what the purpose was of raising it and then taking it away.

I was in danger of blaming my decline on to any possible changes in the brands of meds,as there has been discussion on that here.

[shaws Administrator in reply to Hidden]

Keep in mind I'm not medically qualified. I state what I've found helpful to myself as well as reading researchers.

The basis of 3:1 or 4:1 is for a combination of T4/T3 as I know you realise.

As UK doesn't supply 25mcg of T3, the nearest is 20mcg. So I assume that would work for you on 100mcg of levothyroxine. In other countries their T3 is 25mcg. You can but have a trial. Some split doses but I follow Dr Lowe's (RIP) advice and he took 150mcg of T3 (in middle of night) and I'll give a link which will be helpful:-

naturalthyroidsolutions.com...

Unfortunately doctors or endocrinologists in UK seem to be worried if our TSH is very low or T3 shows high. TSH will be low or very low due to additional T3 and they will stop or adjust dose not realising that an addition of T3 will probably reduce numbers.. Blood tests are only for levothyroxine, not for T3/T4 or NDT.

The problem with the professionals is that they seem to have been 'trained' that if TSH is very low the patient has become hypERthyroid and are worried.

I am not medically qualified but would state a T3/T4 combination if on 100mcg of levo would be 25mcg of T3. If doctor would only prescribe 20mcg I'd accept that too.

naturalthyroidsolutions.com...

thyroiduk.org.uk/tuk/thyroi...

Also when introducing new methods, always take note of how 'you feel' and slowly increase until symptoms are relieved.

[Hidden in reply to shaws]

Thanks Shaws for taking so much time in giving an in depth reply.

My 100/75 brings me to 87.5 per day over two days so I think 20mcgs would be much better than the 10mcgs I'm prescribed.It makes me so mad that they keep us under medicated.They don't seem to realise how much it affects our lives.

I have some spare T3 because at my last Endo visit in May I was given some by my Endo ,which was on top of my GP prescription.I shall as said,up my dose to 20mcgs and discuss things further when I see him in November. I don't want to be adding lots of supplements if it is my T3 that needs increasing.

Best wishes and hope you are well.x

[shaws Administrator in reply to Lalatoot]

Believe me - T3 is definitely not volatile as the addition to T4 calmed all of my disabling clinical symptoms (during the night mainly but also in the day) so much so that Cardiologist was going to put an implant in my heart to try to find out why. I've never see him since and that was about 12 years ago.

[shaws Administrator]

You could contact the Scottish Parliament as they had a meeting regarding the supply of alternatives to levothyroxine. I will look for the link. If your doctor prescribes you should get what you need.

healthunlocked.com/thyroidu...

Elaine Smith MP cannot recover on levothyroxine.

[DippyDame]

Are you asking for (private) sources of T3 or about medics near Inverness who might prescribe T3?

GPs in Scotland are supposed to refer queries about T3 to an endo, if he/she agrees a clinical need then you should be offered a trial of T3.

Much work has been done in Holyrood regarding the diagnosis/need and prescribing of T3 and medics/Health Boards have been told by ministers that if a clinical need exists then the patient should get T3

All fine....EXCEPT that getting said endos to agree that clinical need remains a battle in most cases.

Have you been refused T3?

Have you been told that you might benefit from T3?

Do you currently take T3?

Do you have recent test results, including ranges, that you can post?

You ask specifically about people who are "on T3 25mcg", people's needs vary from tiny amounts of T3 to supraphysiological doses as in my case.

Low T3 can be the consequence of several things....finding medics who understand this is a challenge because most now treat by humanly constructed numbers (test results) not any longer by clinical symptoms. Also, many endos are diabetic rather than thyroid specialists.

You may already know all of this.

I was diagnosed as hypo about 20 years ago after my health had been slowly declining for many years . My then GP further diagnosed Fibromyalgia and Chronic Fatigue Syndrome....no help! I became very ill!

I started to research thyroid disease, found TUK and decided to self medicate......long story explained in my TUK profile

I saw an endo twice and explained my research....I suspect he thought I'd arrived on a broomstick. His conclusion - since what you are doing seems to work I suggest you maintain the status quo....with the caveat that my regime "wasn"t what he would recommend!"

Like many medics I suspect he was struggling....not so much his fault as that of a system that very badly educates med students (and onwards) about the complexities of thyroid disease. A few open their minds and expand their knowledge but very often the powers that be tie their (GPs) hands behind their backs withdrawing their ability to even carry out T3 tests.

Thyroid care is a scandal of monumental proportions, if it were otherwise this wonderful forum would not exist.

Result - I buy my T3 from abroad and self medicate like many here.

Hope that helps explain availability in Scotland... if you need more help just ask.

[Pjgilroy in reply to DippyDame]

Thank you

[shaws Administrator]

I understand that, in Scotland, whatever hormone replacement you require can be prescribed.This includes Natural Dessicated Thyroid Hormones or T3 (liothyronine). I'll give you a link:-

theyworkforyou.com/sp/?id=2...

There has to be a supply somewhere where your pharmacist can source T3.

[Pjgilroy in reply to shaws]

Thank you

[Carna in reply to shaws]

Sadly despite what we are told regarding what the Scottish Government say the NHS health board in Highland will not fund my T3 even with a private endo's recommendation.

I am now buying 20mcg from Germany on private prescription.

[DippyDame]

This will give you additional info...

parliament.scot/GettingInvo...

Reading from the bottom of the list of submissions in the above link note the copy of the letter from Health Minister on 28 May 2019 re T3 prescribing.

[Pjgilroy]

My dose has changed so I have too many boxes of the wrong strength

[DippyDame in reply to Pjgilroy]

Use a pill cutter!

[Hidden]

I'm in the Hebrides and have resorted to self treating with NDT bought from abroad. The astounding ignorance of the GPs in my local practice combined with their sheer pig headedness means I trust the advice from this group far more than anything they come out with...

[Brambles03]

I live in Inverness and I am prescribed T3 if you want to message me.