What *Prescription Thyroid Medication* do you ... - Thyroid UK
What *Prescription Thyroid Medication* do you currently take?
If none of the below apply to you, please add a comment instead.
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Interesting survey, but surely it should also be asking about the most important factor of all ... AND DO YOU FEEL WELL/HOW WELL DO YOU THINK YOUR MEDICATION IS WORKING ON A SCALE OF 1 - 10?
(Not nit picking, so hope you will not view it as such, genuinely interested in people's responses?)
Also, then, if any of you are feeling well then, if you could say what dose of what medication regime you are on, including all doses and timings (if pos) and if you have an autoimmune thyroid condition or not (inc. recent levels of antibodies you have, if pos). So far, I've noticed Rosieposie2 Nachtjenevel birkie have said they feel better, it'd be great if you could all expand on your regimes. Thanks peeps! And so chuffed that you've found the way forward for you! 🥳 🙌 🍾 🎉 🥂😃
No lol
Armour thyroid
same. Since 2002 and it’s the only thing that works for me.
So pleased you've found something that works for you!!!! 🙌 Please could you expand on the exact details of timings and doses that you take? And whether you have antibodies. Thanks 😘
woofa27 Please don't have that discussion on this poll. Maybe start a new post or chat privately.
Armour thyroid is NDT / Desiccated thyroid 😊
not yet!
No never lol
The poll facility is very limited on HealthUnlocked. I think most fellow thyroid sufferers would understand that many people dont feel well on the treatment they are taking. 
Agreed and if they did feel well, they probably wouldn't be on this site!
Yes, it's a pity to waste the oppprtunity to get more useful feedback on the effects, usefulness, or not, of the medication.
woofa27 , You could start a new post of your own to ask those questions. That information will just get lost in these poll comments.
I've been asked by Red Apple to repost the question asking about the regimes of the few of us who are pleased with their medication and who actually feel well. CLEARLY WILL BE A VERY SHORT DISCUSSION 😬🙃😜, but here's a link to it healthunlocked.com/thyroidu...
and what brand…
Liquid Thyroxine, no - sadly I don't feel better. According to blood tests I'm under medicated but taking more just makes me feel worse, in that i still have my symptoms but I then get hyper symptoms too and end up needing beta blockers. I do have hashimotos
I agree no matter what my dose is I never feel any better the guidelines from, to in the nhs the gap is to wide
Hi woofa27. I agree with your suggestion for expanding the survey. I don't seem to have a choice of which brand of levo i take and don't feel 100% on it. Just knowing which is the most prescribed doesn't mean it's the best for those taking it. It would be good to have a survey to help sort out the good from the not so good from the patient's perspective.
Metavive.
Not technically a prescription medication 😊
I know but Metavive Pro can't be bought over the counter.
Are the above results good or bad? Or does it mean we have been put on the cheapest, “that’ll do” option? I have been on this medication for years..I am at sub- optimal levels as recently discussed with my G.P with my thyroid antibodies level off the scale.
Katydl
Suggest you write new post on forum with your most recent thyroid results and ranges. Plus what dose and brand levothyroxine you are taking. Plus vitamin test results and exactly what vitamin supplements taking
High thyroid antibodies confirms Hashimoto’s (autoimmune thyroid disease)
same suggestion for Georgie120
I am unsure how to upload results
Write a new post of your own with info on dose, brand etc
Press blue button marked “Write”
On top right of page
Add image in reply …..it’s more easily readable there
To add image….click on small rectangle of mountains and sun ….bottom right in reply box
Or type in results
I think I have done it. Thanks
Don't feel great
Metavive I and II
Not technically a prescription medication 😊
is metative [ i hadn't hear of it before googled it ] similar to grass fed cows thyroid?and can you buy it in the usa?
a nd are they kept away from the 'vaccines'? do you feel well taking it?
Please write a NEW post for such discussions. And I'll delete your typo reply - you can edit your own replies.
Yes I'm very well on NDT only. (Armour)
So pleased you're feeling not only well, but very well - yippee!!!! 🙌 Please could you expand on the exact details of timings and doses that you take? And whether you have antibodies. Thanks 😘
woofa27, Please don't have that discussion on this poll. Maybe start a new post or chat privately.
Hello I split my dose three times a day which suits me. I've been on NDT for nearly 30 years now. I haven't had my antibodies checked for a long time as I feel well. I'd rather not say what dose I take as think that's only relevant to me not a generalised amount for everyone according to how they feel and what their blood tests show.
Definitely not right! I'm on 125mg of Levo even though my antibodies are off the scale and my thyroid has atrophied. I've rarely had a good day in years pre and post Levo. Even at a recent 1st Endocrinologist appointment fulfilled by a Registrar when I asked about T3 replacing any reduction in T4 he mumbled "No" and looked shocked when I asked if I could have T3 on the NHS! Cheapest option, don't care about our health or the outcomes. Just told 'in range' from private bloods I'd paid for myself. When I asked why do the range figures change each time my blood is done on NHS he couldn't answer and just wanted to examine how small my thyroid is🤷🏻
Thyroid 'care' is diabolical and 'care' is 100% a misnomer. There's a lot of incredibly lazy conceited and, dare I say, negligent doctoring going on world wide and goodness only knows, more research needs to be done. My heart goes out to you, ontherun81 and all the rest of us mistreated and disregarded thyroidies on this site and throughout the world ❤️❤️❤️❤️❤️
Thank you woofa27, it disgusts me tbh. Whilst there are some hardworking NHS staff, there are a lot of Consultants who are very impressed with their selves....obviously as they believe they're closer to God playing with our lives😏
Please consider writing a NEW post if you need help. This is not a good place for an ongoing discussion.
Armour thyroid. I'm very well on it it works for me too.
although I would wish for more help on it.
NDT....through private prescription as nhs won't pescribe it, eventho I have no thyroid and it's working for me 👍 way better than the synthetic T4, T3 my endocrinologist as kept me on for 5 years , that never worked 😡Only downside is my son as to pay for it , as I'm disabled, it's a disgrace 😡
So pleased you're feeling way better - Nicely played!!!! 🙌 Please could you expand on the exact details of timings and doses that you take? And whether you have antibodies. Thanks 😘
Metavive II
Cynomel and NDT - I alternate depending on what I can privately source.
My preferred and better outcome medicine is T3/cynomel.
Cynomel/T3 is liothyronine
Thank you very much! I didn’t want to add a vote as I technically do not have a prescription.
What does NDT mean
Natural Desiccated Thyroid
Thank you
T4 50mcg T3 50mcg and feel great as long as the brand of T3 is Mercury Pharma/Accord. Anythiing other and I go straight into Reverse T3 and feel as though I am being poisoned.
I do find that I need the T4 as it seems to give me a steady base.
Do you mean on the NHS or private? be good to know if the questionnaire would include that that as well. 😊
Not enough option facilities to include that unfortunately. But it doesn't matter for this poll. We could perhaps do another poll about that later.
armour thyroid but I have to pay a freaking fortune because my gp won’t prescribe it even though it works 🙄
Armour Thyroid. Taken for 17yrs, 13yrs on NHS and then taken off my by a GP who refused shared care.....so left without despute being warned by their local endo department that it is dangerous to withdraw it and advisibg to continue....8 months now. ...even though it's a critical to life medication Now under a nhs Endo referred to by my local Endo dept who sends advice and a treatment plan to GP surgery who dont act on it. Having to "negotiate" a resolution.
It's a disgraceful situation.
Try raising a complaint via PALS. Suggest you raise a new post to discuss.
Already have on both fronts. 😊 And much more.....but thanks
I voted NDT but I buy direct so technically not via a prescription. Would be interesting to know how many people take NDT this way.
It is classified as prescription medication, which is what the poll is asking about i.e. not whether you actually obtain it with a prescription 😊
Ahhhh.....got it! 🤣😂
Please consider writing a NEW post if you need help. This is not a good place for an ongoing discussion.
Armour and Projestorone, if I don't take the projestorone my thyroid symptoms come back big time
About to become 80 years......in my experience there seems to limited knowledge among endocrinologists. Their main aim appears to keep reducing T3 regardless of how one feels.
nothing yet
LIOTHYRONINE 50mcg daily. Self funded ( past 6 years) because NHS will not sanction. My GP is happy to do blood tests but I had to sign a no blame disclosure as I am self funding. She is happy that T3 replacement is working for me and is in agreement that NHS is just wrong in denying Liothyronine to those in clear need but sadly it is all down to cost. I get mine from abroad.
It's not cost.....not now.....liothyronine does not cost the earth.....it's dogma. They will happily give you statins & fat busting drugs instead.....latter costs far more than liothyronine!!
I took matters into my own hands around 12 year's ago! But I am now officially on Liothyronine only now prescribed by my Endocrinologist for the past 7 year's!
If the liothyronine is self sourced and not supplied on prescription...does that count?
Yes it counts, because it is technically a prescription medication, which is what matters 😊
Thank you x
Having had a total thyroidectomy about 18 months ago I was on Calcitriol + Calcium Carbonate tablets for circa 9-12 months. Took a long time for my parathyroid glands (or what’s left) to kick in handling by Active Vit D and getting by Calcium level stabilised.
Levothyroxine on prescription, T3 not on prescription
It doesn't matter whether you have a prescription or buy your own. The poll is asking about the medication you take, not about whether or not you get it with a prescription 😊 .
Teva liquid levothyroxine 5mls Daily, not the 7.5mls that I have been told to take because it gives me loose stools, so not Good for me.
No prescription as my previous liothyronine was reduced, not due to clinical need, due to cost. The intention was to increase levothyroxine. This made me very ubwell. Therefore I self source. I take nothing from the NHS for treatment of thyroid disorder.
You can still answer the poll, even though you self source 😊
Levo 175mg in the morning. Have no thyroids cause of cancer. Right eye is limp loss of eyebrows on left. Bags under eyes. My food pipe is out so food goes down one side, so feels like I’ve got stuff on my chest. Feel crap
On liothyronine but not on prescription or funded by nhs.
Carbimazol
Thanks for setting this up, hope it of use.
levothyroxine only.. never been given option or even suggested anything else
Levothyroxine 25 mg only been on it for 4 weeks. Bloods in 2 weeks. Still feeling sore. Trialling modified AIP diet. Have discovered potato and tofu and probably soya tempeh is off the diet( but not dared to try the last one as the tofu was painful++++). But will try other tempeh and see how that goes. Hope to try tomato soon as I hope that is OK.
Never feel 100% GP is not very helpful. Refused to send me to an Endo. I used to take 150 mg per day but GP reduced me to 125mg. Since then I feel tired, have gained weight, have dry skin, weak nails and hair. Never have a good nights sleep and suffer with arthritis. I also suffer with slow gut transit and sluggish bowel. Trying lots of natural things to support my health and well being!
No medication. In the face of intransigent GPs who insist on prescribing to and giving advice against a restricted set of blood tests, I have been (slowly for the last six years) trying various combinations of vitamins & minerals and testing via Medichecks every six months. Fingers crossed, I might have hit my personal sweet spot. Time will tell.
Anyone replying in this poll who’s NOT happy with their current treatment
Please write new post of your own for specific advice on next steps
Include
1) recent thyroid test results and ranges
Exactly what dose and brand of levothyroxine/T3
How long on this dose
2) if autoimmune Hashimoto’s or Ord’s or post thyroidectomy or RAI
Please add antibodies results
3) exactly what vitamin supplements taking
Plus most recent vitamin D, folate, B12 and ferritin results
4) diet info
Eg are you vegetarian, vegan, gluten free or dairy free
5) gender, age and pre, peri or post menopause
6) any other autoimmune diseases or regular medications
Carbamazola
Hi I have been on Thyroxine all my life as I was born without a Thyroid gland in 1960 and the specialist at my local hospital did not find out that I was born without a Thyroid gland till I was 13 months old when all the damage was done. I had no Neck my Tongue was too big for my Mouth and I could not even Sit up on my own at a year old and my Bones was not growing and I did not sleep very well plus it left me with some Brain Damage because it was too late. And my late Specialist called Dr Kendall who found it out and he told my late mum I was a real miracle to be alive I should have been a Cabbage but I proof them wrong. And it is though me that they found a brand new special Test for new born babies by doing a Heel Prick when they are only a few days old and with the Test it will show if the new born baby as got Thyroid problems and catch it early and all they have to do is take the Thyroxine Tablets for the rest off that Child’s life and live a normal life. And they told my late mum that when I become a Adult that I might not be able to have any Babies but I proof them wrong I had 2 normal Babies and lost 2 unborn Babies and my Daughter is now 38 and my Son is 36 and they are both ok.
But I do not keep very good Health I have got a lot off Health Problems and I have had 4 Strokes one at 33 and 2 Silent Strokes in 2020 and another one in Feb 2021 and now I have found I have got 2 white Mast on the bottom off my Spine and I have got Osteoarthritis all over my Body and Asthma so I have been going though Hell at the moment. And when you get some really stupid people who tell you there is nothing wrong with you it,s all in your Mind because you cannot see from the outside off your Body they think they know everything. And they keep saying that I love being ill and that I love all the attention from the Doctors and Nurses and I love being in hospital they really have got no idea what so ever what I have had to put up with since I was a Baby. I did not ask to be born this way at all. I really wished I had Died when I was a Baby then I would not cost the NHS any money or waste their time.
Do start a new post if you would like some personalised recommendations.
My dosage is correct for me and I would give a score of 10.
Hi, I have graves but I'm in remission so, thankfully, not taking any thyroid medication currently. Previously I had been taking propranolol and carbimazole. My starting dose was 20mg but it was whittled down to 5mg over time.
I suggest anyone who wishes to try liothyronine has a look at the ITT (improve thyroid treatment) Facebook group. They have created a template letter to help people get liothyronine T3 prescribed on NHS. Sorry for reply being off topic, but there is so much dissatisfaction with current thyroid treatment being expressed on this thread, that I just wanted to help.
I am generally well maintained on 75mcgs Levo + 10 mcg Lio
Primary Hypoththyroidism diagnosed 2011 and Hashimoto’s in 2016 following severe cardiac condition. Confirmed with antibody tests and thyroid scan.
Previously on 20 mcg of Lio but reduced due to endocrinologist cardiac concerns .
At present TSH 0.04 T3 and T4 mid range values
Feeling very tired and sluggish but could be due to a host of other illnesses.
Trying this two levothyroxine and liothyronine. Still think is not the right for me. Would like to try NDT but I am not allowed on NHS
Endo @ out of london nhs hosp, put me on 5 mcg Lioth & 75 Levo combinatinon therapy, but stopped as GP would not do shared care agreement but advised i take combi therapy: since 100 Levo: but nxt week going too new endo hosp in london:: See what they say: so far 4 hosp::
I’d have liked to say that’s all I can get - no choice. Want to trialT3
Do you mean actually via Prescription, or are you including those of us that have to buy our own? G.
The poll is for anyone taking prescription medication, whether self sourced or not 😊
thank you, done.
Have joined in solidarity for my son
None, I am just monitored as my blood tests are borderline. Originally joined as my ex has been on Levothyroxine for decades.
Levothyroxine 75mg.
none