New medication prescribed Liothyronine - Thyroid UK

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New medication prescribed Liothyronine

Frustratedmum profile image
14 Replies

Hi I have had hypothyroidism for the past 37 years and have taken Levothyroxine (varying doses) for most of that time. I had a period taking NDT bought online from Thailand and felt well for the first time in my life. I had to stop this and switch back to Levo however in order to be seen by an endocrinologist at Addenbrookes Hospital in Cambridge earlier this year. Have had a number of tests including a short acting Synacthen test. All ok apart from the continuously high ESR, and TSH too low. Have been told to reduce the Levo dose slightly and have been prescribed Liothyronine 5mcgs twice daily. My GP isn't able to prescribe these without approval from the prescribing committee, so today I have done a 3 hour round trip (with traffic) to collect a prescription written by another consultant (mine's on holiday).

My questions are:

Does anyone else struggle to get their GP to prescribe this medication?

Are there any special instructions for taking that I should be aware of, e.g. take on an empty stomach and avoid dairy products etc.?

Has anyone had good results with this?

Thanks

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Frustratedmum
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14 Replies
galathea profile image
galathea

Everyone struggles to get liothyronibe prescribed because if the cost. ( its currently being investigated)

I'm at a loss o understand why you went to see the endocrinologist, in order to get the synthetic t3 when you know you feel well on the ndt.

The synthetic stuff doesnt work quite the same as the ndt, its not an exact copy as if it was it wouldnt be patentable.,

Why dont you just stay on the ndt?

Xx

Frustratedmum profile image
Frustratedmum in reply togalathea

My reluctance to stay on the NDT was for a variety of reasons:

1. I wanted to understand the causes of my hypothyroidism - had never been investigated. As I am experiencing other health issues too I wanted to see all the relevant specialists and the endo refused to see me if I was taking NDT!

2. You can't be completely sure what you are taking when you buy online from abroad!!

Having said all of this, I haven't ruled out buying and taking NDT again.

SlowDragon profile image
SlowDragonAdministrator

I am in same position, just started T3 , waiting to see GP for NHS T3. My endocrinologist writing to say I have clinical need.

If an endocrinologist says you have clinical you should get it prescribed.

Frustratedmum profile image
Frustratedmum in reply toSlowDragon

Let me know if you manage to get it prescribed!

Francis1957 profile image
Francis1957

Hi I was put on T3 last year although I repeatedly asked for NDT but my specialist always replies with " I can't prescribe that " so he tried me on T3 as I was sick of just existing not living he wrote to my Dr giving him permission to repeat prescribe so there usually isn't a problem but all Thyroid drugs should be taken first thing in the morning except when your having your bloods done I don't take them till after as it will alter your thyroid test results, I take mine even if I am just popping out of bed to the toilet around 5.30am then I go back but because I freshly juice fruit and vegetables for breakfast anything with iron in you should have a gap of 5 hour either way I have had Hypothyroidism for 24 years and was fine on just T4 and then I kept having symptoms back and my levels were all over the place that's why my endocrinologist prescribed the T3 hope this helps

Dee

Clutter profile image
Clutter

Frustratedmum,

Same as Levothyroxine take T3 with water 1 hour before, or 2 hours after, food and drink, 2 hours away from other medication and supplements, and 4 hours away from calcium, iron, vitamin D supplements, magnesium and oestrogen.

I would expect an Addenbrookes endo to know that TSH is likely to remain suppressed if Levothyroxine dose is reduced and T3 added in.

I've been taking Levothyroxine + T3 combination for 3 years and have found it very beneficial. I suspect if I was trying to get it prescribed today the extortionate cost would make my GP practice very reluctant to agree to it.

SlowDragon profile image
SlowDragonAdministrator in reply toClutter

Extortionate price, but cheap to produce.

NHS needs to license French or German T3 as an alternative option.

Clutter profile image
Clutter in reply toSlowDragon

SlowDragon,

Any manufacturer can apply for a licence to manufacture or distribute T3 in the UK. Makes me wonder whether the licensing process is very onerous or very expensive as competitors to Mercury Pharma aren't evident.

SlowDragon profile image
SlowDragonAdministrator in reply toClutter

Current political situation probably not helping, as continuation of long-term tarrif free trade is unclear

Treepie profile image
Treepie in reply toClutter

I had read something about a medicine being licensed in one EU country meant it could be be prescribed in others but apparently not.

Clutter profile image
Clutter in reply toTreepie

Treepie,

It can if you have a prescription and if there is sufficient medicine available. Most European T3 is 25mcg so unless a UK prescription for Liothyronine 25mcg is written you will only be able to obtain German Thybon 20mcg.

shaws profile image
shawsAdministrator

If the Endocrinologist informs your GP to prescribe T3 for you I think he/she will prescribe.

New rules have been given by the British Thyroid Association that no T3 is to be prescribed from now on but it can be prescribed for clinical reasons.

Quite frankly, I've always taken my dose of hormones of whatever first thing when I get up i.e. levo only, then T3/T4, then T3. It's a bit of a bind to try to fit in separate doses throughout the day i.e. stomach has to be empty: food interferes with the uptake: when we eat etc and Endocrinologists somehow think that T3 has a short half-life which may be true but the fact is that it should saturate our T3 our receptor cells and its work then begins and lasts between one to three days for that one dose.

Frustratedmum profile image
Frustratedmum in reply toshaws

Hi

Thanks for your reply. I'm just pondering how to fit in all my different medications and supplements especially as the T3 has been prescribed twice daily!

On waking I take a cocktail of medication including Levothyroxine, an anti-depressant, an anti-histamine and Gabapentin for nerve pain for fibromyalgia. At bedtime I take Gabapentin again along with Vit D, folic acid, cranberry capsule and a sublingual B12.

I'm really not sure how I am also going to fit in the T3 whilst following the guidance to ensure it's effectiveness!

shaws profile image
shawsAdministrator in reply toFrustratedmum

Thyroid hormones have to be taken alone with interference from no other medications. Usually when we awake and wait about an hour before eating.

You can take all your thyroid hormones together, there's no need to split. If adding T3 you can add it to T4. On adding T3 I'd take half for about a week then add the other half. I'd take no other medications until lunchtime or later. Also take pulse/temp several times a day before adding T3.

No matter what someone takes, i.e. levo: T4/T3: T3 only they have to be taken alone. I'd take all other vitamins/minerals etc at lunchtime or bedtime as you're doing so that there's no interference with the uptake of thyroid hormones.

Seeing you have been given an anti-depressant but are hypo, the doctor should test your Free T4 and Free T3. T3 itself can be used as an anti-depressant. Fibro - I'll give you a link (I think you are on insufficient thyroid hormones).

The problem with doctors they don't understand hypo. Are unaware that everything is interconnected and they prescribe other medications for clinical symptom of hypo.

Some links for you.

web.archive.org/web/2010103...

Dr Low found that people with fibromyalgia are resistant to Thyroid Hormones so therefore need T3 only.

web.archive.org/web/2010081...

google.co.uk/search?q=T3+fo...

Has your doctor taken your Free T4 and free T3 and I'll give a link of why these are necessary but are thought by the BTA to be unnecessary.

thyroiduk.org.uk/tuk/testin...

(I am not medically qualified but have gone along the same sorry road as many on this forum. I am now well, thankfully).

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