Advice of people’s t3 experience : T3 Dear all... - Thyroid UK

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Advice of people’s t3 experience

Pittucoleal profile image
9 Replies

T3

Dear all , please can someone advise me

If they have had any experience in ordering t3 over the internet lthyronine . Generally I am so against taking any medication that has not been approved however I can say that I am now at me edge of reason with my body swollen and the weight is going up x approx 1

Kg per month despite being on levothyroxone. 150mcgs . My t3 levels are low end normal

As the t3 . My tsh 2.4 and my antibody counts are high . Thank you and happy new year to you all

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Pittucoleal profile image
Pittucoleal
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Britomartis29 profile image
Britomartis29

Dear Pittucoleal,

Yes, I have used T3 both when it was prescribed by my physician in the US, and now having moved to the UK, have obtained it (1) when traveling outside the UK. and (2) over the internet. Here's how it went in my experience of what worked and what didn't:

(1) When traveling to the US I just go to my old pharmacy and it's fine, they refill the prescription. (A very expensive botttle, for the price of the plane ticket! I'm going back in March and will try to get a 6-month supply then; that's the most in advance they will give without continued blood tests.) In Europe I don't have a pharmacy or a doctor, so that was no luck: in France three different pharmacies said I needed a prescription from a French doctor. Same when I traveled to Canada; tried and failed at two pharmacies there. Then my US pharmacy agreed to ship some to a friend of mine in the US, who then planned to ship it here, but it was against UK customs rules, so that didn't work, and wasted a prescription sheet. Maybe others know a better way when traveling.

(2) While here in the UK, it has been shall we say difficult to obtain: the NHS won't allow it, as my GP explained in late summer when I tried so hard to work within the system. I'm still waiting to see an endo. (It has been really incredible that a patient with a serious condition and with a documented need for lifesaving medicines, and a ten-year history of success using those medicines to preserve good health, has been denied those medicines; is that malpractice, or negligence? Is that in line with the Hippocratic Oath? Hmm.) But back to the question:

Generous forumites knew places to try on the internet; at that time, there was a shortage in Greece, and also in Turkey, the two main places I tried. I ordered some and paid and waited, waited, waited, inquired, waited more, and finally after more than two months wrote them to ask for a refund, whereupon they sent some fake-looking small white bottles, not in sealed packets or sealed bottles, and it had no actual pharamceutical markings like lot numbers, dates, etc, just a kind of printed-out label that looked as if any home computer could have issued it; that felt far too risky to me, and I did not take any of that. Meanwhile, worried about the delays, I had also ordered some from a pacific rim nation (keeping that nameless to make sure this supplier stays safe), and that batch arrived in a couple of weeks and seemed fine.

So, it's challenging, and you have to be alert, willing to waste some money and time on trial and error, and above all patient. Don't give up.

Also, when it arrives, be careful not only to make sure you are getting a sealed packet of actual, pharmaceutically certified medicine, but also, pay attention to the dosage: some kinds come in 25mcg tablets, others in 100mcg tablets, and that obviously makes a huge difference. Since I'm supposed to take 25 mcg most days and 50 mcg on two days per week, I just use a pill splitter on the 100s that came (also, the pills are small, so it makes one feel imprecise about dosing, never a good thing with thyroid; just be as careful as you can at every stage of this).

Of course make sure your vitamin levels and nutrition are good, or the medicine you've gone to so much trouble to obtain, won't work.

How much better it will be when we are able to get the prescriptions we need! I look forward to that day. Good luck to you!

Clutter profile image
Clutter in reply toBritomartis29

acoldiron,

You were misinformed. It is perfectly legal to import T3 to the UK from USA or anywhere else for your own use or that of your household. UK Customs only interest in T3 shipped from the USA or outside of the EU is to slap 20% VAT on it plus £8 handling charge to RMail for paying the VAT on your behalf.

Britomartis29 profile image
Britomartis29 in reply toClutter

Well thank you for this information; I wonder why they couldn't get it through? This was recent; are laws changing? This might help a great deal, and save much in plane fares! Thanks!

Clutter profile image
Clutter in reply toBritomartis29

acoldiron,

No, there's been no change to the law.

tpauk.com/main/article/mhra...

Britomartis29 profile image
Britomartis29 in reply toClutter

Wonderful info there, very helpful in planning a shipment as well. It explains why, perhaps: only a 3 month supply is allowed. Thanks again.

Clutter profile image
Clutter in reply toBritomartis29

acoldiron,

It doesn't say 'only a 3 month supply is allowed'. It suggests that is deemed to be a reasonable amount. Customs won't know the daily amount you take so won't know whether you have ordered 3 months worth or 6 months worth will they?

Britomartis29 profile image
Britomartis29 in reply toClutter

Hmm, good point. I do wonder why. But am encouraged to try again now!

SlowDragon profile image
SlowDragonAdministrator

Before adding T3 you must test your vitamin D, folate, ferritin and B12

With Hashimoto's they are highly likely to need supplementing first to improve before starting T3

Also gluten free diet likely to help or be essential too

Post your vitamin results and ranges for advice on what supplements

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ask GP for coeliac blood test first

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

T3 - French or German are prescription only. But easy to order online, or from UK online pharmacies.

Clutter profile image
Clutter

Pittucoleal,

You are undermedicated to have TSH 2.4 while taking 150mcg Levothyroxine. What are your FT3 and FT3 results and ranges?

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