Reputable source of T3?: Sorry for this to be my... - Thyroid UK

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Reputable source of T3?

JenWeeble
JenWeeble

Sorry for this to be my first post but I'm desperate!

I've got a background of hypothyroidism caused by Graves' disease, previously treated by Levothyroxine and Cytomel while working in the USA. Since I moved home to the U.K. I've only been in Levo and was feeling rubbish but my brother is in the forces and was posted to Cyprus so could get me T3 OTC over there so I went back to feeling fine. Supply has run out and brother is home so things are back to being pretty bad.

Just saw the GP because I feel like a walking talking corpse, managing to put on weight on a diet of 800 cals a day and I just want to give up. There's no way he's giving me T3, not even privately. I've asked to be referred to endocrinology but he said the waiting for endo is 12 months as I'm not urgent and they won't give me T3 anyway!

My levels are FT4 - 0.7, FT3 - 42!

Does anyone know where I can get T3? Preferably without travelling abroad?

31 Replies
SeasideSusie
SeasideSusieAdministrator

JenWeeble

Do you have the reference ranges for your results? Your FT3 result looks extremely high for the range we normally see on here (3.1-6.8)

My GP said it should be above 80, I'm not sure if he's converted it because all my old results are in the American format so never match up with the NHS print outs. I was diagnosed over there.

JenWeeble
JenWeeble in reply to JenWeeble

If it helps the units are ng/dl

helvella
helvellaAdministrator in reply to JenWeeble

Which makes it look far more like a Total T3 test than Free T3!

Total triiodothyronine

Lower limit to Upper limit Unit

60 to 175 ng/dL

0.9 to 2.5 nmol/L

Free T3 would be measured in pg/mL (USA) or pmol/L (most of the rest of the world) but, ironically, the numbers are only very slightly different despite the different units. Results in pmol/L being only about 3% higher than pg/mL.

en.wikipedia.org/wiki/Thyro...

JenWeeble
JenWeeble in reply to helvella

My GP does my box in! When I came home I was on 150mg/25mg. He dropped my Levo to 75 and removed the T3 because the nhs don't supply it so as far as he was concerned it wasn't effective. And Americans over treat (in fairness I do think they diagnose it earlier but still), THEN he took my bloods and said I obviously wasn't taking my meds because my levels were on the floor and I was like "could that be because you halfed my dose?".

Now every appointment is like a battle to go anywhere with him. He once referred me to slimming world because he thought i should be losing weight. The day my brother found T3 in Cyprus I almost had a party, ditched slimming world and felt great again.

It's lovely having him home but being back to fighting the GP every 3 months is frustrating. Every time I ask my levels he just mumbles them, I never get an actual print off just him writing down off the screen on a bit of paper. I feel like he thinks thyroid isn't that big a deal.

greygoose
greygoose in reply to JenWeeble

Don't ask him, ask the receptionist. In the UK, it is your legal right to have a copy. If they don't give you the results - including ranges - they are breaking the law. Perhaps you could remind them of that! :)

MissGrace
MissGrace in reply to JenWeeble

Can you change to another GP? He sounds dreadful. It’s unbearable to read about his treatment of you. It seems completely negligent. What on earth can he be thinking?

Emmuvva
Emmuvva in reply to JenWeeble

Yes, I think cchanging GP should be your first step. My GP is open to people taking T3 but isn't allowed to prescribe it without authorisation from a consultant - or at least that was how it stood some years back. But finding a private consultant who will prescribe it is no easy matter so I gave up - I feel pretty okay on T4 anyway. But My GP did say she has patients who buy in Armor dessicated thyroid from abroad - I assume you've checked out whether you can do the same for synthetic T3 from an online pharmacy?

Quasarlis
Quasarlis in reply to Emmuvva

Put in a formal complaint about the current GP first though. As said in my PM to this chap take a friend with him with a note book taking notes, tell him exactly what he thinks of his conduct, ask for reasons for the dosage drop, demand a referral, reasons for not supplying result copies and inform him that there will be a formal complaint made about him claiming medical mis-conduct .. The GP will soon change him mind then! I did this and the GP was like a quivering little boy by the time I left!

Emmuvva
Emmuvva in reply to Quasarlis

This image brought a smile to my face. Arrogant doctors don't know what to do when intelligent, informed patients stand up to them.

Quasarlis
Quasarlis in reply to Emmuvva

It was a picture I can tell you! The GP was given just enough rope! The missus was taking notes etc, I put the issue across about why the NHS doesn’t like to give T3, told him I have a BSc Hnrs (which I do), that I know how to research and the importance of non biased views on it, even if the conclusions are not what you want. Told him I have been doing my own research for 2 years, asked him some in-depth questions like how RT3 is made, Hashimoto anti-bodies etc and he couldn’t answer so I said something like ‘You can’t answer fundetmential questions related to our desease to the point of lieing about it and telling me you won’t refer me? I demand a referral as I want to speak to someone who knows what they are talking about (supposedly), not some GP who reads the basics out of an out of date A-Level study book. I will also be putting in a complaint about your medical incompetence .. His voice got all nervous, he THEN became very ‘helpful’ and compliant and gave me the referral ... The endo I saw was just as bad, made him look like a complete idiot too! He didn’t know what to do with himself!

SlowDragon
SlowDragonAdministrator

Roughly where in UK are you?

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne


tukadmin@thyroiduk.org

Before seeing any thyroid specialist you will need FULL Thyroid and vitamin tests

Low vitamins are very likely due to your GP reducing your dose unnecessarily

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Post results and ranges on here if you have them already

Private prescription for T3 will enable access to cheap T3 from Germany, though it's unclear if UK prescription will be recognised post Brexit

JenWeeble
JenWeeble in reply to SlowDragon

I'm in the highlands, not much choice of GP around so I can't change

SlowDragon
SlowDragonAdministrator in reply to JenWeeble

But you can do private blood tests

Edinburgh has good endo. Still not that close I guess

shaws
shawsAdministrator

We used to get T3 prescribed but Big Pharma increased the cost by hundreds of % that the Associations took the opportunity to have it banned in the UK and at present we have a Petition before the Lords because of the withdrawal, without notice, to people who need T3 to feel well.

Have been getting NDT from Thailand for 3 years: <redacted source>

Had a couple of appointments with an NHS endocrinologist but she would not consider NDT even though Levothyroxine was making me ill.

helvella
helvellaAdministrator in reply to tyronecvc

When you signed up to this forum, you were asked to agree to the guidelines. Your response here breaks guideline 25 so has been edited to make it compliant.

25. Do not post advertisements, links or information of any sort whatsoever, on where or how to obtain UK prescription only medications without prescription. This includes online pharmacies who issue 'prescriptions' on the basis of the completion of a simple health questionnaire.

healthunlocked.com/thyroidu...

Do not decrease calories to 800 a day, your body will just grind to a halt, unable to use the nutrients you are consuming and unable to convert the Levothyroxine to T3.

I am fortunate to have a sympathetic gp who wrote me a private prescription which I used to get T3 online from pharmacy in Germany, who mailed it to me. If you do change to a gp who will listen to you I can pm you the details. I hope you find a way forward to get back to restoring your health.

McPammy
McPammy in reply to R2d2c3po

Hi. I am reading your reply on here regarding T3. Could I please ask where I could get T3 in Germany from. Do you know the cost also please. I have been very ill the past 6 months. My private Endo has agreed to give me a private prescription for T3 to trial. But I don’t know where the best and most inexpensive place is to get it from.

I hope you don’t mind me just jumping in with this request.

You could PM me with details, I would be sooo appreciative.

Many thanks

Pam

<email address removed>

helvella
helvellaAdministrator in reply to McPammy

PLEASE don't post your personal email address! It reduces your safety and security.

Have a look here.

thyroiduk.org.uk/tuk/treatm...

R2d2c3po
R2d2c3po in reply to McPammy

I have sent you the details by private message.

smpk
smpk in reply to R2d2c3po

Hello, like McPammy, I would be very grateful if you could PM me too with details of your supplier, in Germany. I have a 15- year- old who needs T3, and we have to pay for it privately.

My email: <redacted email>

R2d2c3po
R2d2c3po in reply to smpk

Hi, don’t give your email address on this forum, there is a facility up private message you on this forum as explained above. I have sent the info on that.

helvella
helvellaAdministrator in reply to smpk

Please see this post: healthunlocked.com/thyroidu...

My GP (New York) offers phone consultations and believes in t3 only protocol. Once you have a RX you can fill it at any canadaparmacyonline. If you pm me I’ll give you his name and number. I’m on 250 t3 only.

cbeee
cbeee in reply to Nutripea1220

Can you msg me ur GP info - I'm in the Chicago area - tia!

rodin
rodin in reply to Nutripea1220

If you would please message me your GP's name I would be most appreciative.

Thanks

If the only thing wrong with you is low thyroid hormones and worried about T3, why not supplement with the following

A B Complex, Selenium, Lugols iodine/iodide 12% one drop equals 25mg and the amino acid Tyrosine after all the T in T4 T3 FT4 FT3 stands for Tyrosine

So thyroid hormones are Tyrosine and Iodine/Iodide the selenium is for conversion of FT4-FT3 and the B Complex is for Tyrosine to be used.

If the adrenals are involved then you have a metal problem ie zinc copper and iron imbalance. If autoimmune is involved you have a critter or two that's causing the problem like Candida EBV Lyme etc... hope that helps

No doctors here in the UK will give you T3 as the NHS has to pay £250 per box, T4 costs pence per tablet. The House of Lords will be discussing this again in a few weeks so everyone please write letters to as many Lords as possible: I've sent 6 letters this week, just go online and find the list of names and send or email as many letters as you can, this is are only chance of getting NICE to allow doctors to prescribe T3.

My own GP won't even give me a private prescription for T3.

Good luck

Helen

SlowDragon
SlowDragonAdministrator in reply to Helensusan

You can get T3 on NHS...

But it's a hard fight

Only an NHS endo can now diagnose a patient as having clinical need. Initial prescription is covered by endocrinologist hospital for first three month trial. Then, assuming doing well the care and COST is taken over by your GP

The hard bit is getting a referral to a T3 friendly NHS endocrinologist

Email Thyroid UK for list of recommended thyroid specialists, some prescribe T3

please email Dionne


tukadmin@thyroiduk.org

Obviously also need full Thyroid and vitamin testing

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

DIO2 gene test can help in your fight to get prescribed too, assuming you test positive

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

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