I was very fortunate to get my NDT on an NHS prescription. My lovely GP saw what a difference it made as I got better and decided to prescribe it himself rather than me get a private prescription from my endo.
Unfortunately my GP retired last year but I still managed to request a couple of repeat prescriptions.
In the meantime, my Fitbit had indicated my pulse being a bit fast. As a result I reduced my dose from 2.25 grains a day to 2 grains on 5 days and 2.25 grains on 3 days. This was after being on 2.25 grains for 4 of 5 years feeling pretty well.
I became a bit careless and forgot to take any NDT for a couple of days, seemingly with no ill effect.
However, at the beginning of May I had a headache which carried on for 3 weeks. I eventually went to see the GP who wasn't interested. I requested a thyroid blood test, nog really thinking this would show anything. I had to wait a week for the test and during this time my symptoms worsened with dizziness, vertigo and aching wrists reappearing. I suddenly realised that it was likely to be my thyroid, and when I got my blood test results they were:
TSH 0.04
FT4 12.1 (12-22)
FT3 3.9 (3.1-6.8)
Interestingly my FT3 and FT4 were bottom of the range and similar to when I first felt ill and wax diagnosed with a thyroid problem 5 years ago.
I decided to see my endo who I hadn't seen for 2 years. He suggested splitting my dose but annoyingly wants to get my TSH higher - usually it's suppressed so I don't think I can feel well if its detectable. He did reluctantly agree for me to go back up to 2.25 grains though.
The following week I tried to get my repeat prescription but have been told it's a "red" drug and can only be prescribed by a consultant. I'm sure this is as a result of my endo writing to the GP and mentioning my heart rate
I have made an appointment to see my new GP on Wednesday, just in case I can do anything to persuade him - very unlikely but worth a try.
The good news is that I'm feeling so much better. I have been back on 2.25 grains for about a month. I'm relieved that I know what was causing my issues but disappointed that I will no longer get the treatment I need from the NHS. I knew my luck was likely to run out st some point though.
P.s - hello to all of my old friends on here x
Written by
Clarebear
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I have ordered some from over the Internet but am also getting a private prescription from my private endo. If the Internet stuff comes quickly I will not use the prescription for now. It is such a relief to be feeling better thanks.
Good to hear you've managed to feel better by getting back on track with your meds.
I too now have to get my meds via an Endo and have to pay for a private prescription and get my meds privately
I take 3 grains of Armour and after 12 yrs of taking Levo and Citamol feel a great difference. Though taking Levo took its toll and left me with a dried out thyroid and now don't have one.
How does that happen ???????
Still I am feeling much better though a costly experiment in getting here and now get my meds privately
HI Clarebear I was only thinking a couple of weeks ago that you must have cracked it as we hadn't heard from you for a while. Glad you have now got over your blip and know what it was that caused it. Hope you manage to get NDT easily enough,one way or another.
Thanks. Just got back from my GP and he won't prescribe it for me He kept calling it a red drug that needed to be prescribed by a consultant. I think I will try writing to the surgery as I'm really cross.
I got back from my GP yesterday morning when I implored him to at least let me try NDT and to perhaps prescribe it on a "named patient' basis. He stalled me by saying that he would talk to the pharmacist about my current concerns over side effects taking Levo. (in other words...he wasn't going to help). on returning home, I immediately emailed Louise roberts TUK and requested the recommended Endo list. Then booked my appointment with a private consultant. No hesitation. If NDT will sort my illness out...then I am prepared to pay for it... we are only in this world once! The only reason I haven't done anything until now is because I have kept waiting for the Levo to help me...GP said it takes 12 -18 months for things to settle down - they never have and its 2 years now. rather than getting better - I am worse. I am 58 years old and want to be in this world for the reminder of my life, as a healthy woman (where possible)...not the sick one I am presently and have been for the past 2 years!
re my private end.....Its just a blinking long wait till 27th July!! but counting.......
PLEASE PLEASE do put a complaint in to your surgery...and send a copy to the BMA (British Medical Association) Change will only happen when the BMA realise the strength of the people. Thats what I am doing.
Thank you - I will do. NDT had been an absolute life changer for me. I had a huge amount of help from the knowledgeable people on here. If you are interested in reading my rather long story documenting my struggle to get sorted,it's all on here. Starting NDT was very difficult as was raising the dose but I got there in the end. Good luck to you too - hope it helps you as much as it has me xx
thank you clarebear. I can't believe so many people are in this dreadful predicament. When I was first diagnosed as Hypo...I was given Levo and was told this would sort me out in reality, over 2 years, my dose has steadily increased to 200mcg now back down to 125mcg (just this week) with no improvement to my life. Actually....instead of improving my life...it's left me feeling as though I am a blinking hypochondriac that the GP is now truly fed up with. I have now had enough. the worst though is the chronic - and I mean excruciating lower back pain that has crept on the past 9 months or so... (last night - well, about 3.30am, I woke up with such pain I wanted to cry.) I believe this is a side effect from Levo. The bloating and inability to shift weight has only been since I've been on Levo...plus terrible loose bowel movements first thing in the morning. (never a problem before). I never associated these symptoms with the drug that was supposed to help me...I just naturally assumed it was my condition that was causing these problems. GP over time, said of symptoms...you must have IBS. I did not and would not accept this. It is only reading the many posts on this wonderful site that it has suddenly dawned on me it the blinking Levo drug! I can't wait to try something else like NDT. The endo I will see on 27th Juy is, apparently happy to prescribe NDT. I know I have a few more weeks of misery but if NDT puts me right in the end, it will be well worth the wait. Best wishes. Shona
My endo was very sceptical as I was the first patient he ever agreed to prescribe NDT for. That was about 5 years ago. However, he now has a group of us all doing really well on NDT or T3. He isn't perfect by any means - he would like to see my TSH higher - but he is becoming more enlightened. He will support me if I write to my GP and the BMA - which I will certainly do. X
As soon as I have composed my letter of complaint to my GP (with copy to BMA) I will let you know. It won't be until my present GP has come back to me with the outcome from his 'chat' with the pharmicist about the side effects of Levo. (because obviously my description as a hypothyroid sufferer is worth diddly squat!). Grrr just the thought of what he said makes my blood boil. Can I ask you again though, did you suffer with chronic back pain when on Levo?
No - I did get pain in my wrists and ankles but not back - although I do suffer with lower back pain I don't think mine is thyroid related as I've had it when I've been well-medicated. Good luck with GP/pharmacist! X
Hi Clarebear, I have just moved to Bath and doubt very much a NHS GP will prescribe Nature Throid which has worked well for me for the past few years. Please could you PM to let me know where you ordered your meds online. Thanks.
Hi Clare You are certainly experienced in this battle! Can you let me know who your endo is and where you Order from online? I am really struggling. I just can’t believe how difficult this is in the UK! I’ve moved to London from Canada, run out of NDT and like many, my
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Switched to NDT a month ago - no change, am I too impatient?
GP reduced my levothyroxine dose
Armour and sleeping
What should I tell my new GP?
