Have just returned from visiting my gp without any good news. She has been in touch with the prescribing authority in Tayside who have never heard of Armour, but also told her they do not have any NDT on their list of approved drugs as thyroxine is the only one recommended by the NHS! Surprise!! She is trying to find out if there is anywhere that does supply NDT but does not believe she will be able to write even a private script as she will have to sign it and she may get into a lot of trouble. She did tell me that if there was a way to help me she was quite willing but was not happy to put her career in jeopardy, fair enough.
She has looked on this site and has said that I should be careful of taking all my research from untrained people as they do not understand the whole picture. I laughed and told her that the people who are suffering are often the ones who understand things far more than a gp or consultant who has not had the pleasure of the disease.
She told me there will not be an endo who will prescribe if the health authorities do not have the drugs on their list! I told her there were a few but as of yet I do not have their names or where they are located. She aske me to let her know if I find out and she is going to try to find a way to get NDT for me.
I asked about getting the whole list of blood tests when I go again in 4 weeks and she was very happy to agree and has put them on the form.
My last results taken AFTER I had taken my Thyroxine are:
Free Thyroxine : 21.6 (9.8 - 18.8)
TSH : 0.03 (0.4 - 4.0)
Free T3 : 4.2 (3.3 - 6.1)
She reduced my dose from 200mcg to 175mcg but I felt worse and went back to 200mcg. I feel better on this amount but not good.
The gp did warn me that doing too much research without having the medical training to interpret my research could be bad as I would not understand it! This was not what I expected to hear from her and shows she is judging my intelligence to be below hers. I actually find that rather offensive. (Especially since I passed the Mensa entrance).
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Barb1949
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Barb, the reason why we advise thyroid meds should be taken after the blood test is to avoid peak levels being measured after ingestion and GPs reducing dose accordingly or refuse to increase dose.
GPs can prescribe unlicensed medications using a named patient basis explained below. There is also a link to a couple of letters from MHRA re prescribing Armour, NatureThroid and Westhroid. Not sure you should be bothering your pretty untrained head with all this, your GP should know it already what with her superior medical training and all that.
Clutter, yes I do now know about having bloods done before taking meds. I have an apt for 15th Dec at 08:30. Was originally offered 11:00am but when pushed was given the first apt which "we like to keep vacant for emergencies". So I explained why we need an early appt. She was totally unaware that time would make a difference and thanked me for the info! Yea.. one up to this forum.
I did tell gp she could prescribe on a named patient basis or if she was worried she could refer me to an endo when I find one. She thought I should go to Dundee as it is our area but I told her I was quite happy to travel to see one who would be sympathetic. She looked a little sceptical but told me to see what I could find out. She id tell me, however that there was no guarantee an endo would see me as it is not usual practise to refer on unless there is a particular medical need. I personally think 23 years and little relief of symptoms could be a particular medical need!
But then I don't want to strain my untrained brain with all this extra information,
Barb, Helvella did a spreadsheet listing which GP practices in England prescribe T3 and NDT. In his reply to Galathea (2nd post down) he lists the NHS source of the data and outlines how it can be sourced for Scotland, Wales & NI.
You're not converting, Barb! Even taking into account that you took your T4 before the test, that T3 isn't even mid-range. You definately need some form of T3.
Congratulations on your restraint with your doctor!
I did wonder about that Greygoose, but since the free Thyroxine is so high I thought that might b having an effect. I will ask about getting that on script too. I was pleasantly surprised that she actually included the T3 test without being asked. I think I saw it on the computer for the next test in 4 weeks too. Plus I am getting the Vit D, B12, Iron, Ferretin an folate. This should be interesting.
Your GP is talking a load of C**P!!!! My endocrinologist has prescribed 50 days of Armour as a trial after being on Levothyroxine therapy for 12 months and then Levo and Liothyronine combined for 6 months and my symptoms are not improving. I was diagnosed with thyroid cancer and had the right thyroid lobe removed in February, 2013 and started on replacement thyroid medication in the hopes that I would only need a little bit of Levo. My endocrinologist has written to my GP and asked him to prescribe my Armour in future but made me aware that my GP might refuse because it is an unlicensed drug in this country and I might have to pay for a private prescription. If I was you I'd ask to referred to an endocrinologist and if you're GP refuses then, finances permitting, go private.
I did speak to her about going to an endo. She seems willing but I said I would like to research and choose one myself. Funnily enough, after asking on the forum I have been given a name of an endo in Dundee which is my nearest large teaching hospital. It appears he is very sympathetic to thyroid sufferers and has prescribed NDT before.
My gp did say from the start she doesn't know a lot about thyroid disease; she wasn't kidding! I got the distinct impression she is probably a locum or trying for a permanent post in the practise. She certainly doesn't want to upset the applecart.
Having to go private may be a bit too far for me as I only have my pension but I am willing to try.
Fingers crossed this endo in Dundee will be the right person for you. I'd insist that you are referred via your GP and go from there, or contact the endo you've been told about and ask for an initial appointment and then ask to go on his/her's NHS list. When my husband was involved in a serious car accident nearly 15 years ago we had to do this so that he got the care he needed to learn to walk again. The initial cost of the appointment might be a little high but it will be worth it in the long run when you get the treatment you deserve.
I was intending to ask my doc to refer me to the endo in Dundee. She was wanting me to go there anyway since we are in the Tayside area. She will be happy now! I just hope I will be, hehe.
I am sorry to hear about your husbands accident. I trust he is walking ok now? That must have been a very worrying time for you both.
I am down at the hospital tomorrow morning so will try and find out a bit more about him from his colleagues. I am working with endo students tomorrow. Who knows, the great man may even be teaching and I will get to see what he is like. Unfortunately, I am not working on thyroids tomorrow, I got 'diabetic feet' instead, lol.
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