NDT

[DaizeeFoo]

I am very disappointed with using Levothyroxine. I read somewhere I could buy it online. Do I need it prescribed to purchase it?

Will my Dr's be able to monitor it? Do I need an Endo? Is NDT expensive?

Sorry for so many questions.

[shaws Administrator]

You can purchase NDT yourself. You don't really need much monitoring. All you need is the usual blood tests. The blood tests were introduced at the same time as levothyroxine, therefore the blood tests for being on NDT wont correlate.with levo i.e. NDT contains T4, T3, T2 and T1 and calictonin and levothyroxine T4 only. I

You'd have to put up a new post or someone who reads this will send you a private message with details. You don't need an Endo. I shall also give you a link plus info about NDT as rumours have been spread by the pharmaceutical companies. NDT has been in use since 1892 successfully and is made from pigs or cows thyroid glands.

Dr Lowe wrote the following to the British Thyroid Association and, despite three yearly reminders, they never did respond before his early demise.

thyroidscience.com/Criticis...

web.archive.org/web/2010112...

[DaizeeFoo in reply to shaws]

Thank you Shaws. I have got to the point where I am just sick of constant illness. I had a tooth abscess 6 months ago. No reason as my teeth are perfectly healthy. 4 lots of anti b's and 6 months later I am still suffering pain in a tooth which had a root canal 20 years ago! I can't lose weight and because my weight is so high I could be dead within the next 10 years. And with the NHS crumbling away I am using every last bit of energy trying to get medical letters and treatment out of doctors refusing to do anything. Dunno yet if I can afford to do NDT but it's time I found out I think.

[shaws Administrator in reply to DaizeeFoo]

It is worth a trial at least. This person is now fit and well and on the rampage due to the anger that many of us who've been undiagnosed/misdiagnosed and left to get 'on with it as TSH is fine'.

healthunlocked.com/thyroidu...

healthunlocked.com/search/l...

I had to try a couple of NDTs and I now believe I cannot tolerate T4 due to being well on T3 only.

[DaizeeFoo in reply to shaws]

Well, my TSH levels the last 2 blood tests have been high end of range once and just over range once. I am fine apparently. Then the Endo sticks me on extra 100mg Levo per week which has made me very ill and has discharged me.

They could not care one jot if I am well or not.

[Clutter in reply to DaizeeFoo]

DaizeFoo,

Most people need TSH 1.0 or lower with FT4 in the upper range to feel well. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

[DaizeeFoo in reply to Clutter]

Thank you Clutter. That is very useful.

[shaws Administrator in reply to DaizeeFoo]

TSH has to be 1 or lower and most feel best with lower. If you are feeling much worse with the increase it could be that levothyroxine doesn't suit you. I was always unwell on levo (not everyone is) and it is trial and error. Some, with a little T3 added works for them.

Best is a TSH of 1 or lower and FT3 and FT4 towards the to of the range. It is all trial and error and we thought it would be easy once diagnosed but many feel much worse.

If you are worse, I'd drop your dose back somewhat.

[DaizeeFoo in reply to shaws]

Yes I dropped my dose back to 200mg daily instead of the alternate days 200/225mg. I did this last week and within a couple of days BP was reducing. I know there will be some residual Levo in my system for a bit, but I feel a whole lot better at this moment.

I am prepared to add in 25mg a week for a few weeks and see how it goes, then increase up to and extra 50mg per week.

Forgive me for not having my correct TSH reading to hand but I think the last one was 3.58 and the top of the range was 3.94. My Endo said 1 is too low and that it is not safe to bring it down to 1 long term. I have been below 1 before and did well but even though I was on a stable dose of Levo my TSH started rising as I had a brief bout of anemia.

The Dr will not test fT3 or fT4 only TSH. It was the Endo who used to ask for 3 and 4 and they would do it then.

To be honest, I have just about had it with my practice. Even today they are not even capable of organising my repeat electronic prescriptions to get to the chemist and I got shouted at my the pharmacy lady at the Dr's because the pharmacist at the chemist phoned her up to ask what was going on. A slight aside, but she got very nasty and said I could no longer get my script of Aveeno cream which I have for the terribly dry eczema I get. Aveeno is the only thing that works. She told me I wasn't allowed it because it is blacklisted by the NHS. The pharmacist at the chemists told me this wasn't true and she was advising people being told this to report it to the practice manager. I cannot wait to move at the beginning of next year. I have never had so much stress and problems accessing NHS treatment as I have at this current practice. Where I lived before was extremely good.

[shaws Administrator in reply to DaizeeFoo]

At times I think people who have a job dealing with people at the 'front' of the office/surgery need to be of a special type of person - one who can remain calm, supportive and if not knowledgeable is able to ask for information. Rudeness is not the way to go, particularly if dealing with sick people who are struggling as it is with their medications.

However, re your Endo, we have to read and learn and look after ourselves, it would seem. Re TSH email [e-mail] and ask for a copy of the Pulse Online article by Dr Toft (who was President of the BTA and is also physician to the Queen when she's in Scotland. It's no use showing this to the Endo I think as he's set in his ways but gives you info which will help make you well, i.e. TSH below 1.