Last month I had to go in for day surgery for a minor procedure. I had a pre-op assessment because I had to go under general anaesthetic. I told them I am on liothyronine not levothyroxine. Was told no blood test needed as last TFT was normal. Then 2 days before procedure called in for blood test. Low and behold it included a thyroid test.
So, of course T4 came back very low and surgeon sent a letter to my GP.
They called me today about it. My goodness has it stirred up trouble. My fault to an extent for not informing my GP I suppose.
They insisted I do another TFT to which I said “well I can but you’ll need to make a note that T4 will still be low which is normal because I’m on T3 only and don’t take T4 right now.” They responded curtly with “who told you that?!” I said “the private GP I see.” So I got told I need a letter from the private GP detailing my treatment. I got the impression they didn’t know that T3 mono therapy would cause a low or next to nothing T4 level… and had to tell them twice I was taking Liothyronine.
Less than half an hour later I got a phone call from my GP surgery again telling me the Doctor had referred me for a thyroid review relating to the pharmacy. Which I don’t understand? I’m guessing they will pull my levothyroxine repeat prescription. Surely, the doctor knows I can’t get Liothyronine through my pharmacy so I don’t understand why I am having this review?
Has anyone else had a thyroid review with their pharmacy? I’ve never had one before. Would be good to have an idea of what might happen.
Looks like that pre-op assessment has opened a whole can of worms 🐛 😬
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MsWhistledown
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If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 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 if last test result serum B12 was below 500 or active B12 (private test) under 70:
If I'm understanding correctly, your GP still thinks you take Levo via NHS but you are on T3 only via private GP? Have you been collecting your Levo from the pharmacy or just not ordering it? Are you well and happy on T3 only and intend to continue with it for the forseeable future?
If so you are under no obligation to have a thyroid review. At worst the surgery pharmacy team will stop your Levo, but if you arent using it or ordering it then its no loss. You are certainly not beholden to the NHS for thyroid meds or monitoring. Nor do you have to justify or explain yourself or provide a letter from your private doctor, unless you want to.
If you are sure that you will receive your thyroid care via private GP then just politely tell your surgery that you no longer want them to oversee your meds or blood tests. It will get them off your back.
Yes, until today when I had to tell them. Still have a repeat prescription available for levothyroxine but haven’t collected any since April.
I feel a lot better on T3 but still optimising dose and slowly titrating up. So, not there yet. I suppose I was thinking I’d like to keep the door open to levothyroxine in case I want/need to introduce some back in alongside the T3 somewhere down the line. So, wanted to hold onto the repeat prescription for the time being.
Thank you. First time navigating this kind of situation with NHS GP and being private as well. I feel so gaslit long term by NHS doctors. I find it hard to make a decision in circumstances like this.
I had a thyroid review with a pharmacist at my practice. She was even more clueless than the GPs knew absolutley nothing about the thyroid and its replacement needs. I might have been unlucky.
Thanks Hectorsmum2. Going by my experience with every doctor in my GP surgery regarding my thyroid health, I have a feeling this thyroid review will be very similar to yours. What’s interesting is they haven’t asked me why I am seeing a private doctor for my thyroid treatment…
Yes I understand you wanting to keep options open, especially as getting diagnosed and treated on the NHS is so hard. Its bad luck you got rumbled due to your op. Its a common downfall of either going private or self sourcing any alternatives to Levo. The NHS simply doesnt accept or understand us wanting anything else. Very blinkered thinking.
I'm having similar problems with my gp, I was on synthetic T4 and T3 [ not mono] but after 5 years of trying to stomach it with absolutely no help from my gps I tried NDT started on July 18th and doing OK on it ..no nasty side effects like I had on the synthetic stuff.
I was informed by the clinic to notify my gp of my change in thyroid medication, I did this via the receptionist and were then asked to come for a face to face appointment with a gp, and to bring my new medication ..which I did.
My gp took my meds all £178 pounds worth and disappeared somewhere, she came back saying " well it appears you purchased this medication from a company in London"
"Yes I said"
Pretty sure she thought I'd gone to a shady seller on the Internet 😡
Anyway she told me she was not happy with me taking ndt..eventho my bloods showed a massive improvement in the levels, something the T4, T3 never did in 5 years of taking it, she urged me to go back on T4 or T3 therapy 😂 eventho it never worked.
Of course I refuse..saying " you want me to go back on a therapy that never worked? All blood work from my time on it proves it never worked
You want me to ditch a £178 pounds worth of medication my son purchased for me because you can't.. or won't monitor me on ndt😡
She is adamant I need to come off ndt as my health can be effected, totally ignoring my now in range blood tests, my latest phone appointment with her was very much the same...she admitted the ndt had rendered my thyroid bloods in range but again said " it would be better if you discontinued using a thyroid drug I can't control, it also means I can't do thyroid bloods on you.
"Quite frankly doctor I don't give a dam"
What the hell happened to your hippocratic oath?
I have primary hyperparathyroidism and at some point when the nhs get there elbows out there a###s I will need a parathyroidectemy it will be interesting to see how they react to me taking ndt in relation to the op🤷♀️
When I was trying the T3 only my T4 was 2.4 never really moved because as you say T3 therapy keeps the T4 low , but everytime I had bloods they always flagged up my low T4 ..saying (hypo needs intervention on increasing thyroid medication) 😂😂😂 I mean every flipping time..do they never read notes?
Anyway my conclusion is my gp doesn't seem to care about my thyroid health or my parathyroid health so why should I care what she thinks!!
And I've got a body MOT on Jan 20th which includes thyroid and parathyroid bloods...win for me..👍
Personally I'd prefer never to have a thyroid test via NHS ever again. I dont want their ill informed meddling, their lack of knowledge or finger pointing. If I was completely self sourcing I'd tell them to take a hike and tell them I'm managing my thyroid myself.
There's nothing to be gained from them. I have zero confidence left. A lot of it is just them arse covering.
I totally agree with you👍, unfortunately I'm suffering with primary hyperparathyroidism all bloods done by both nhs and a private parathyroid surgeon point to this condition. The private surgeon would do the 4 gland exploration at a cost of £6/7 grand I just don't have that money, so he sent me to a surgeon in Liverpool who is a nhs thoracic surgeon, but as always with the nhs ..and the Liverpool surgeon admitted her hands are tied by nhs guidelines concerning parathyroid conditions..that a calcium level of 2.85 is required and a positive scan to identify the rouge gland before surgery would be offered.
I know this to be total bullcrap..but when I present to my gp with what is undoubtedly symptoms of primary hyperparathyroidism they always jump on my thyroid medication, totally ignoring my over range pth/calcium 🤷♀️
So until I win the lottery I'm stuck with these incompetent specialist's 😡
Who quite frankly don't know there a###s from there elbows.
What's more infuriating is...I study both of my conditions read up on them and when I challenge the gp or specialist on the subjects I'm told I shouldn't believe everything I read on the Internet 😡 then I say..." even if I get my information from the nhs website", which I have 😂.
Then it's even more infuriating when YOU see a specialist look up your condition on a WEBSITE!!!....you can't make this 💩 up
Just to cover the review with GP pharmacist. Many patients have their meds reviewed by a clinical pharmacist at their GP practice. They have specialist knowledge about medicines and how they interact with other medicines, side effects etc
All that said your clinical pharmacist is likely to have similar or less knowledge about T3 monotherapy to any GP. Probably best to refer them to your prescriber for any reassurance they might need. I have done this myself with a low TSH and once they had a letter back from my Endo, I (and the GP) were covered.
Pretty sure its a bit of an excercise to cover themselves. You may well lose the Levo prescription but you don't need it anyway.
Yes, that’s exactly the case at my practice. We have a lovely Pharmacist but he has no clue about thyroid meds. I am under an NHS Endo and because he tests 4 times a year, and prescribes my T3 - the surgery staff leave me alone. But even then, iI have to remind them to read the info sent by the Endo.
The other day I went to a nurse appt to have 2 stitches out - and when I was called in, she was waiting with a pillow for my arm and a THS form🤷♂️. So I explained why I was there.
NHS systems are designed to make staff follow protocols so will keep demanding actions if no information is added - the hospital blood results are not shared with surgeries - and vice versa. In my case the Endo has to write to my GP - and I have to tell them to refer to that when they want to do a thyroid test. Once they see I am under another clinician they are ok,
Surely, the doctor knows I can’t get Liothyronine through my pharmacy
Increasing numbers of U.K. patients are getting T3 prescribed on NHS. Though often necessary to send prescription to specialist pharmacy to get it fulfilled
Over 67,000 prescriptions for T3 in England in last year
Thank you SlowDragon. This is useful. I guess I am unlikely to get T3 prescribed by my NHS GP if my private doctor writes a letter to them. But I guess it might be worth asking? Nothing to lose?
Thanks for this, I've just discovered that my surgery has prescribed T3 this year. Time to push to get my prescription reinstated. It's not my fault the original endo prescriber is dead, it doesn't mean I'm cured.
They are just doing their job properly. If you but they should have asked for your FT3 results like they do here in France. They actually do want you to wake up from any procedure.
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Should I be concerned? T4 is out of range FT3 near top of range.
GP prescribing Liothyronine!!! 
Totally confused and worried 
At a dead end with GP, where to go from here?
