The other day I had to visit the doctor because of another (unrelated to my hypo) problem, and we got to talking about medication. I told him that because my recent blood test didn't test for T3 I was thinking of buying a private test.
He told me not to do that he'd do another one for me and he added another couple of tests to it too.
Then I asked him if the cost of T3 was why the NHS didn't prescribe it. He said they don't really like doctors to prescribe but that if I needed it, there wouldn't be a problem because he has a few patients who are on T3.
That made me wonder why so many here are asking about where they can buy it privately from.
Written by
Ellie-Louise
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The Guidelines state that if the patient has a clinical need for T3 it should still be prescribed.
Unfortunately, many doctors have taken the stance that they wont prescribe T3 because they may really believe we are being devious and pretending we feel worse on levo. Plus the recent exorbitant cost of MP T3, whereas there a couple of other T3s available, unlicenced in the UK and much less expensive than the Licenced T3 and which can be prescribed on a named-patient basis. Many doctors refuse to do a named-patient basis as they would then be completely responsible should the patient have a bad reaction.
As far as I understand T3 has had far fewer problems/withdrawals than levo.
This is an excerpt from the following link:-
"Now, to address your rheumatologist�s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:
"NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data � 1997.)
This statement makes a fact perfectly clear: When used sensibly, T3 is extraordinarily safe among prescribed drugs. When I say extraordinarily safe, I�m comparing T3 with drugs such as the amitriptyline which your rheumatologist prescribes for you. Below is a list of potential harmful effects of amitriptyline. This list comes from the Physician�s Desk Reference, 53rd edition, Medical Economics Company, Inc., Montvale, 1999, page 3418.
my dr said if endo advised t3 he had no problem prescribing it for me, until endo wrote to him saying i needed t3, then he had to ask the practice mngr who said NO they were not prepared to fund t3 when levo soooo much cheaper. My endo told him that on levo i become ill with RT3 and my dr said he had no idea what that was but the practice wont fund t3. I got CCG involved thro my MP who said he can prescribe it as long as he is insured to do so, he didnt want to increase his insurance costs to cover a drug he knew nothing about. The CCG are also not keen to fund it...this went round and round pushed by my MP who is shadow health secretary and he is gob smacked that this is going on but admits to having no experience in the health industry. I gave up in the end its just easier to buy it xx
I would buy T3 but I unfortunately can't afford it at present. My Gp won't consider T3 therapy, won't refer me to an endo and refuses to allow any further thyroxine increases even though my tsh is at 3.36 and I remain very unwell with no quality of life and unable to function, in chronic pain and exhausted with a myriad of symptoms. Labs refuse to test anything other than tsh. I have changed surgeries and seen many gps all are the same and refuse to listen to me. I had less symptoms when my tsh was 0.36 but they won't listen to that either. They will give me the maximum doses of codiene, amitryptaline, nortryptiline, betahistine for balance and dizziness, steroid spray for postnatal drip, creams for rosacea etc. I believe all my issues stem from my thyroid but they won't listen. I give up for now!
Unfortunately many are in the same position as me with doctors who just won't listen leaving little choice but to buy their own medication.
I was told my thyroid was "borderline underactive" in about 1990/1991. I don't have autoimmune hypothyroidism so my thyroid didn't really deteriorate, but my thyroid hormone levels stayed low, and my TSH stayed high. I was told I had sub-clinical hypothyroidism in 2013. After doing some begging my GP very reluctantly gave me a prescription for Levo.
When I didn't do well on Levo, I decided that waiting 23 years for thyroid treatment was long enough. I'd had symptoms since childhood, and I'm now in my 50s. So I started treating and testing myself. I've improved a huge amount since then. If it took 23 years to get Levo, I imagine it would have taken me another 100 years to get T3. I wasn't prepared to wait any longer!
Unfortunately in many areas the CCGs (Clinical Commissioning Groups made up of GP practices) have decided to restrict or ban prescription of costly items / procedures. In my area T3 is blacklisted to GPs, which means the are not permitted to prescribe under any circumstances, and redlisted to consultants, so they are only permitted to prescribe as an acute case (such as awaiting surgery or myxedema coma)
This situation is so unbelievable 🤔 when an illness such as this is classed as life threatening, but then everything is done to stop it being treated properly and fairly worldwide.
I'm sorry that a lot of you don't have sympathetic medics, but thank you all for responding to my question. x
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