I asked my nhs consultant if i could try T3 together with T4 as i have struggled with levo for six years since having my thyroid removed due to cancer growth. She said it may help to make me feel better in the short term but long term could cause health problems, heart was something she mentioned, she said under nhs it was very difficult to prescribe as its very expensive but said she would write to my doctor asking if they would be prepared to prescribe T3, she never got a reply back. How do people get prescribed T3 on nhs and if not how do you get it. My nhs consultant didnt paint a very good picture regarding T3. Was that because she knew i would struggle getting it on the nhs. Im about to have a nhs blood test including vitamins but that was before i had read all the comments, im now going to get a private one done. Ive got my routine yearly appointment with nhs consultant at the hosital in november and have a blood test taken in readiness of my appointment so the results are discussed at the appointment. i am going to take the results of my private blood test with me, will he acknowledge it or only want to go by the nhs one. It seems the only way forward is to go private but its expensive, if i get a private blood test done myself will a private endo accept the results or insist they carry out their own blood test. If they think i need T3 where does that leave me?
Getting T3 on nhs: I asked my nhs consultant if i... - Thyroid UK
Getting T3 on nhs
If an NHS consultant believes you have clinical need of T3 they can and should prescribe an initial 3-6 month trial with prescription dispensed by hospital pharmacy
The trouble is most seem more concerned not to affect their promotion prospects, rather than treating the patient
Initial prescription cost is picked up by hospital. Assuming that the trial goes well, endocrinologist then writes to your GP instructing them to take over the care and cost of prescribing
T3 is not an expensive medication in the rest of the world. NHS is being ripped off by cartel of suppliers
So if you find, despite jumping numerous hoops you still can’t get prescribed on NHS, going the private route may be necessary
Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists who will prescribe T3...NHS and Private
tukadmin@thyroiduk.org
A private prescription for T3 enables access to cheap T3 from the EU (at moment...though Brexit debacle may stop this)
Thybon Henning 20mcg x 100 tablets is only 31 euro
Details on Thyroid UK website how to order if you have prescription
UK T3 now around £175 for 28 tablets (down from £258 when only one supplier)
First step is to get FULL thyroid and vitamin testing done...usually that means privately..as NHS won’t test everything
Getting levothyroxine fine tuned and all vitamins OPTIMAL is often enough to improve symptoms
Certainly this must be done BEFORE Considering adding T3 alongside levothyroxine
Thank you for good advice, ive certainly found out more on this website then i have ever had from hospital consultants and doctors during the past six years, its been a real uphill battle. Is it still worth getting the nhs blood test done or just get private one, my hospital appointment is November should i get private one done nearer to the appointment? Forgot to mention i take 62.5 mg daily. Higher dose gave me palpitations, high blood pressure, water retention and generally feeling unwell.
Suggest you get FULL Thyroid and vitamin test now
That’s a tiny dose of levothyroxine
Have you tried different brands levothyroxine or liquid levothyroxine?
When under medicated Likely have low vitamins...essential to supplement to improve all four to optimal levels
It’s chicken and egg ...low vitamins means you can’t tolerate adequate dose levothyroxine...inadequate dose levothyroxine means low vitamins
Get full testing now...remember to get test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
If taking any supplements that contain biotin stop these a week before ALL Blood tests as biotin can falsely affect test results
Do you have this list by any chance SlowDragon? I’ve not got a reply from Dionne. Is the email address correct?
See you have had complete thyroidectomy
So will need Full replacement dose of levothyroxine
Guidelines on dose by weight is 1.6mcg per kilo of your weight
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
gp-update.co.uk/Latest-Upda...
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
BMJ also clear on dose required
bestpractice.bmj.com/topics...
Man6 people after complete thyroidectomy need the addition of small dose of T3 alongside levothyroxine
Important to stick to one brand of levothyroxine
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
Teva and Aristo are the only lactose free tablets
healthunlocked.com/thyroidu...
Teva poll
healthunlocked.com/thyroidu...
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
verywellhealth.com/best-tim...
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
What vitamin supplements are you currently taking?
Fish oil daily i was taking vitamin D orally, spray under tongue, it ran out and i havent replaced it, never been one to take vitamins as any tests ive had done in the past ive always been ok, or so they have said, i never realised that vitamins were so important to enable the thyroxine to work better. I dont want to start any vitamins right now so it shows up in the blood test exactly what i am lacking, it will give a clear picture of whats needed, do you agree?
Yes ..Test now while not taking any supplements
We need OPTIMAL vitamin levels
NHS only test for deficiencies
Eg vitamin D under 50nmol is deficient
Over 75nmol good....but around 100nmol may be better
Ferritin...within range is anything over 15 ....good is over 70
Serum B12 within range over 180 ...optimal over 500
Folate within range usual 2-3 ...optimal nearer 20
I was put on Activist and Wockhart after operation from the hospital, i have had many hospital appointments always telling me the importance of keeping my TSH surpressed so the cancer wont return, i have self medicated as far as dosage is concerned as the hosital put me on 225 mg daily after op, i thought my head was coming off i felt so ill, even my consultant said he advises the endo team not to put everyone on such a high dosage bearing in mind im only 5ft tall weighing 9st, he said they dont listen to him. I have been reducing my dosage gradually myself to stop all the horrible symptoms i was experiencing, the hospital was ok with it so i didnt think i was doing anything wrong, i couldnt carry on the way things were. So thats where im at 50mg Activist, now Accord, the pharmacist has confirmed that there have been no changes in the ingredients just the packaging and 25 mg Wockhardt.
This has been a very difficult 6 six years, spent mainly trying to get the right information, the truth, from hospital consultants, being made to feel im the only one who has ever complained and felt so unwell on thyroxine, why do they do this its so unfair, i now have a clearer idea what i need to do, so a small finger prick will provide enough blood sample for all those tests?
So you would recommend any one of those companies that are listed on here? No i have always kept to the same brand only because its what the hospital prescribed for me after my operation, a couple of times i was given something else at the chemist, i tried it and very quickly felt unwell.
I havent tried a liquid form. Do lots of people take it, are there good reviews to taking tablets?
You need to click on reply...otherwise the person you are replying to doesn’t get notification (Easy mistake to make)
Yes definitely getting FULL Thyroid and vitamin testing is first step ....have you ordered anything?
Make sure to get all thyroid tests as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
What vitamin supplements are you currently taking?
If taking any supplements that contain biotin you need to stop these a week before all blood tests as biotin can falsely affect test results
Medichecks Thyroid plus vitamins including folate (private blood draw required)
medichecks.com/products/thy...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
Come back with new post once you get results
9 stone in weight is 57kilo
57 x 1.6 = 91mcg levothyroxine per day
So you are likely under medicated....low vitamins too as result
Likely to need 75mcg/100mcg on alternate days.....or take 75mcg plus half a 25mcg tablets so that taking 87.5mcg everyday
Palpitations are often due to being under medicated....
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