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?
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JenWeeble
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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.
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.
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.
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!
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?
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?
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!
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!
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
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
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.
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.
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.
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.
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.
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.
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.
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.
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
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