I have been taking my T4 for nearly 30 years and unfortunately have never been well. This seems a theme on this forum. Lab tests have always been within the tolerance range that Endocrinologists and GP's are happy with however my health has never been satisfactory. I felt as though I had exhausted other causes so made one last try and was referred to a new Endo who asked if I would like to try T4/T3 on a private basis.
The last month has been amazing where previous symptoms have reduced significantly and my energy levels have improved dramatically.
However I have a couple questions that I wonder if someone could answer for me ? Sorry if I have missed them from previous posts.
The cost per month is massive and for example 30 more years is getting into house buying values. Can someone PM me on how I could obtain T3 ?
The Endo is willing to issue private prescriptions (at a cost as well) however the medical profession is quite fluid and he could move on/retire. How do the T3 dependent ensure ongoing unbroken supply ?
Written by
Turrets
To view profiles and participate in discussions please or .
Getting DIO2 gene test may help get T3 prescribed on NHS....if you test positive for this genetic variation. Though some Ccg areas are still extremely reluctant to fund
Bloods should be retested 6-8 weeks after any dose changes
Do you have Hashimoto's? (Autoimmune Thyroid disease) or had thyroidectomy?
Essential to regularly test vitamin levels.
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels (and antibodies if never been done)
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative and rarely will test FT3
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
I was diagnosed HypoThyroid 30 years ago. Prior to that I had been very fit and active. Tests proved I had raised antibodies and a serious low level of vitamin D which has been an ongoing theme. The advice you have kindly provided is very welcome and I will pursue. I have not had the tests done as you point out and my GP/local hospital won't do more than a TSH which always has been around 1 to 1.5 for some time.
My trial is still underway for the T4/T3 combo and so far excellent results. I will get the Antibodies test done as that seems to make sense.
My biggest concern is that if my trial is a success I still have to deal with the vagaries of prescription availability, supply of T3 and sourcing and now it seems Brexit may throw yet another spanner in the works.
I am due to see the endo again next Monday so have far more to discuss with him - he does admit that his hands are tied which is mad. In the mean time I will book the extra tests.
I’m on holiday in Cyprus and. Any get the tests done before I meet with him. However he is willing to discuss matters via phone/email. I have just asked him for the 100 x 20 mcg T3 which he is writing up now.
I live in South Yorkshire
Thank you for the guidance on the type and timing for the tests which I will post
My previous doctor dropped my T4 from 112 to 75mcg and had the receptionist call me with a prescription and told her to tell me that I should come back in a year 'because we can only do thyroid tests once per year.' (I have switched clinics...)
You will need to get FULL Thyroid and vitamin testing 6-8 weeks after any dose change
Reducing dose by such a large amount is ridiculous
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Well I was shocked that the doctor told me I could only have one blood test a year (and not much on that, no vitamins etc.) I know how to do blood tests, was doing them in Poland for years (where the doctors actually tell you how to properly do a blood test and normally you see an endo, not an internist). I've just ordered a thyroid test privately (2nd here), am waiting to be a week w/o B12 as they said. I do have one more question - I'm doing a T3 trial and taking it at night b/c if I take in morning, it disturbs my sleep. (1/2 tablet) Should I refrain from taking it the night before?
Poland doesn't have everything either - I don't think you can get T3 at all (except I did find a pharmacy on the German border that works with a German pharmacy to fill T3 prescriptions but you have to find a doctor to write one.) I didn't know anything about T3 until I came here and started reading more and found this forum. I don't think they do NDT there either. Different fights but at least some endos have more of a clue.
The eno isn't at all cheap and my T3 is costing over £200 per month. I understand it can be sourced from Germany for less than £25 ! Good luck in your quest
Hi Turrets I hope you are well and the T4/T3 working for you. Could I ask how you have been in the thirty years of having this awful disease and what symptoms you had.,
I was diagnosed 9 years ago and have never been well, with such debilitating symptoms, I kept going to my GP and telling him how ill I was and all he said was its the menopause.
I was rushed into Hospital not long after seeing my GP, with a suspected heart attack and shortness of breath with palpitations. The hospital did various tests to confirm that I was Hypothyroid and needed urgent treatment, also my body didn't have any vitamin D, so my GP messed up big time, as I could have died. I was then sent to see an Endocrinologist who was worse than my GP, all he was interested in was my ranges and not my endless symptoms, he gave me Levothyroxine which I was unable to tolerate it, but he was adamant that it was not the Levo.. So for five years I was so desperately ill and made another app to see another endo, my symptoms were from head to toe, physically and mentally and wanted to die, I was then put onto T4/T3 combination which I have been taking for a year now, and yes still very ill.
My endo has told me that I am a very complex patient and don't seem to be tolerating the medication. She keeps changing the dosage in an attempt to make me well, but its not working . HELP!!!! I am sorry for the long post, but i'm completely at a loss at what to do.
It was quite a shock when the HypoThyroid kicked in. My health changed from very fit and active however I still kept on fighting it and pursuing my career and business interests. I have no idea what can be done and it is only by chance that my latest endo (private) asked if I wanted to try the T3/T4 combo. I'm still in the trial period and so far so good. My concern is how do I source the T3 ongoing as I hope I need it unbroken for many years ahead. I am sorry to hear you are struggling and I wish you well. There seems no magic bullet for a very small percentage of thyroid related patients and the medical profession don't seem to acknowledge any issues as significant enough to do anything. Perhaps there is not enough money in it.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
T3+T4 combo
Sourcing 5mcg Liothyronine (T3)
T4/T3 advice for ongoing symptoms?
T3 research? (i.e. T3 only not T3/T4)
Advice and “moral support” needed with T3/T4 combo
