hi, I know Thyroid UK are doing their best to get us treated fairly. I’ve just been given a private prescription for a 3 month trial of T3.
I know the price has reduced, but I’m still shocked by the unfairness involved: I’ve had to pay £300 for three months supply at our local pharmacy but 20 minutes up the road in Suffolk it’s included on the NHS. Where I live mid Essex won’t allow it on NHS. If I find I’m suited to it or I need an increase this expense can’t be sustained as my husband and I are pensioners.
I’ve read the parliamentary reports regarding this - how is it still allowed? Talk about rip off Britain - a box of T3 can be bought in Greece for under 3euros over the counter! I know the company in the UK charging extortionate prices for T3 were fined, but they still charge approx £65 a box for it and the rest is VAT 🤬and chemist charges. How is this allowed if it’s under 3 euros in Greece?
I don’t know how this unfairness is allowed to continue but there doesn’t seem a way around it - my consultant joked maybe move house - it’s just so wrong!
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Did you ask for your prescription to be made out for Thybon Henning 20mcg (mentioned frequently on the forum)? You could have sent that to one of about 3 pharmacies on TUK's list and the price is around £60ish for 100 tablets.
hi, no didn’t think! That’s a lot cheaper! I’ve got 10mcg £65 for 28 😩then VAT and pharmacy charges! Is Thybon Henning the make? Thank you I’ll make a note and save money next time!
oh I didn’t realise - ivebeen off levo completely for three months as he said my antibodies were very low and he didn’t think I needed it. Three months later I’d put on half a stone and had xanthelasmas forming on my eyelids. My three month later bloods proved I needed treatment so he’s put me straight back on levo with T3 added. I was on 100 mcg levo so now I’m on 50 mcg levo taken in the morning with 10 mcg T3. Only started T3 today and levo yesterday
My jaw hit the floor reading this. This is appalling.
Theres so much to unpack. First of all - withdrawing medication for 3 months?! Just to prove need. They'd never bloody do it to a diabetic. It's sadistic.
Second, dropping from 100 to 50 is way too big a drop in one go (and likely unnecessary) and adding in 10mcg T3 is going to be a rough ride.
When I first started taking NDT, which is thought to be 'gentler' on the system, I was taking 0.5 grain a day which translates to 4.5mcg T3. I was having huge anxiety, including waking up in the night and having to literally 'shake it off' like a dog. It was a very rough ride to start with.
Just be prepared for things to get tough if you're sticking with 10mcg all at once. I came through it but it was awful.
oh no this sounds bad. To be fair I was hoping he’d give me T3 when I said levo seemed to make me put on weight and I hadn’t before I took it. He seemed to think levo wasn’t helping me at all and so when he suggested stopping it I thought I’d give it a go - Wrong decision but he did say to c9me back if I felt unwell. I saw it through as I didn’t actually feel any worse, just fat and bloated, just to prove to myself that I needed medication or if not I’d be free of it as my bones have been affected and he said they’d be better without levo.
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and add a separate vitamin B Complex after a week
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until B12 is over 500
Post discussing how biotin can affect test results
oh I had no idea that ferritin changed after menopause - mine isn’t abnormal after all then! I taking B12 so the July tests were a bit better. I’ll start in Bcomplex + folate - thank you for all of your help! I really appreciate your advice and took it re Alendronic acid - started on D3 and magnesium instead of Alendronic acid and when I saw endo he agreed completely and said Alendronic acid would’ve done me no good at all but D3 and magnesium and daily walk were perfect!
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
hi that’s really interesting - I’m with mid Essex but have had to see endo privately and my GP told me he wasn’t allowed to prescribe T3 if she referred me on NHS 😡
Looking at the mid essex formulary that TaraJR gave link to below , your GP is correct in that 'they' can't prescribe T3 to new patients ..
it is coded RED which in this area means "Hospital Only Medication" ....but NHS Endo in that area can prescribe it and continue prescribing it , as long as they do an IFR (individual funding request)
" New Patients:
To initiate an IFR is required. New patient prescribing should remain with the hospital specialist. Primary care prescribers should not initiate for any new patient"
an IFR is probably a lot of paper work, so Endo probably won't want to be bothered with it if they can get away with fobbing you off . so you may have to be extremely persistent.
hi thank you both for this information - I understand now how it could be possible, however I don’t think he’ll be willing to do it as he must know about this but didn’t offer, agreeing how unfair my predicament is. He prescribe T3 for a family member who lives in Suffolk but she has no problem as they have provided it on NHS for her. Her GP sends her back to endo if things become unbalanced on her bloods - they won’t help with that apparently.
If you're on Facebook, do join us on ITT Improve Thyroid Treatment Group. We have template letters and details of all the parliamentary statements and national guidance that ICBs and drs should be following
Dorset formulary won't allow G.P's to prescribe it here. So have given up and no longer take levothyroxine. I gradually reduced it. I feel much better.
Hi Slow Dragon. GP's will only test for TSH. In April this year my TSH Level was 8.5 (Range 0.3-5.5) But they included Serum Free T4 this was 10.8 (10-22.0) This month July they only tested TSH which was 8.9 Range (0.3-5.5) and not Serum Free T4 I have forgotten the name of the companies that do the blood tests & vits etc. Many thanks.
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