Hi there, I am a relatively new hypo thyroid sufferer, 10 months on Levo and most recently Levo/lio. Sick of being ill, it's never worked for me. Affected work, study and whole life with chronic fatigue, digestion, low mood and loss of get up go which I always had before. NHS doc not happy with. Levo doesn't work for everyone and for some it makes them worse. I am one of those unlucky ones it's not working for. Have ordered Armour thyroid from US to try after reading many reviews and going to try it. Have read BTF website and they say you can get it from GP on a "named patient basis". Has anyone had any luck with getting an NHS GP to give them a prescription for Natural Dessicated Thyroid here on a named patient basis? Just now I'm having to pay for it and happy with that if it makes me well again. Just wondered if anyone had any luck with that as many people I hear order it themselves and test their own blood using private blood tests rather than battle with NHS.
Hello: Hi there, I am a relatively new hypo... - Thyroid UK
Hello
It is rare for doctors to prescribe on a 'named patient basis' although I do know some doctors have done so. The BTA denounce any natural dessicated thyroid hormones as being inconsistent etc. On the Nature-throid website they state that:-
Nature-Throid was released in the 1930s, making it one of the first available medications for hypothyroidism. To date, Nature-Throid has never been FDA recalled for inconsistent T4 or T3 hormones. The hypoallergenic and affordable medication is still in high demand by doctors and patients alike.
I am not promoting Nature-throid but I do know Armour has had a few problems in the past. Just for your information this was an article sent to the BTA:
thyroidscience.com/Criticis...
Regarding your levo/T3 combination maybe if they raised your T3 a little more it might have worked.
I agree it is dispiriting if you are taking medication and are hopeful of feeling much better but instead feel worse.
Do you have a print-out of your latest blood test results with the ranges that you can post. If not to hand today put them on a new post.
When you get a blood test for your thyroid hormones, always make the earliest appointment and fast. Leave about 24 hours between your last dose of hormones and the test. Our TSH is higher earlier in the day and it can make the difference between getting an increase instead of a decrease. If you've not had your B12, Vit D,iron, ferritin and flate tested ask for these too as we are usually deficient and can give us problems as well.
"I am not medically qualified in any way. I am qualified through my own personal experience with undiagnosed hypothyroidism and , once diagnosed, the statutory treatment regime of the BTA and their guidelines which didn't make me well. - in fact I had even more symptoms and pain but finally recovering my health with the help/advice of Thyroiduk.org.uk. and alternative hormone to levothyroxine and comment is not given in my capacity as an Admin of Thyroid UK or endorsed by TUK. Information on the forum is not intended to be a substitute for medical guidance from your own doctor. - shaws"
Dear Shaws thanks for your reply this is really helpful. I take my Levo/lio at night before bed and haven't ever left 24 hours before blood tests. My T3 was at 0.05 and my doctor told me to reduce the T3 about 5 weeks ago and about 2 weeks ago I started to get symptomatic again, fatigue, emotional. I have Nature Throid on its way to me and look forward to trying it. I have currently upped my t3 and think my GP doesn't go with how I feel but just the stats which I see most people on here say happens to them too.
If I get any good results I will certainly share my experiences on here as I have never felt well on Levo, although mildly better with liothyronine but my GP told me she wasn't initially happy prescribing as "it costs £150 per prescription" to the NHS. I was not impressed as when she wasn't happy with last result it was the t3 she cut back on (the expensive pill). At what cost our health, I've paid tax for 30 years and never needed the NHS til now. Shocker.
Your TSH was fine. Some of us need a low and I've often had a TSH at 0.01. I wish you success with your NDT.
Because the guidelines state levo alone to be prescribed in their guidelines, it means thousands remain unwell. If you don't have access to the internet and life must be quite miserable for many. Doctors also adjust according to the TSH alone and rarely take account of our clinical symptom. Because they will not prescribe on a 'named patient basis' for other branded T3 because they aren't licenced in the UK, we have the NHS being charged an astronomical sum for the licenced UK T3. It's a ridiculous state of affairs.
Welcome to the forum, Island_hopper.
A few members have NDT prescribed on a named patient basis but most have to buy their own, although they may be monitored by their GP or endo. Some find it difficult to get FT4 &/or FT3 testing on the NHS and also order private thyroid tests.
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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.
Thanks Clutter. I saw that you can get private blood tests done and will likely go for that. Nature Throid on its way and going to see how I get on with that. Not even going to tell my GP I've gone for NDT and like many in here will have to rely on advice from those in the know on here, really glad to have this as otherwise you are on your own.
Good wishes
Just for info - read first two questions on this link:
Ombudsman letter
How long does it take for T3 (NDT) to be eliminated from the body?
Levo prescription rejected - low TSH
