NDT treatment

[Bofen22]

What does it mean if I had a great reaction to NDT the first 1-3 days. And now it's not helping much, even feel worse in some ways.

It's Thyroid-S, first day I felt amazing after the first pill. No it wasn't placebo, I had symptom relief in so many ways. I still get some benefits but more of a sick and tired feeling as well..

For reference I haven't tried synthetic T4 or T3. They refuse treating me despite all symptoms. TSH has been around 6 for the past year. I know NDT has both T4 and T3, is one of them causing issues?

[greygoose]

Hi Bofen22, welcome to the forum.

How much did you start on? And, how long have you been on that dose?

It probably just means that you're ready to increase your dose. What you have experienced is quite a normal reaction. At first, the body feels much better for an increase in thyroid hormone levels, but it quickly becomes obvious that it isn't enough and the symptoms come creeping back - and, yes, you can even develop new ones. And it just means it's time for an increase.

With NDT, we normally start on 1/4 grain and can increase by 1/4 grain every two weeks until we reach one whole grain. Then, hold for six weeks and retest.

[SlowDragon Administrator]

Are you in the U.K.

With 2 separate thyroid tests with TSH over 5, and symptoms you should be prescribed levothyroxine

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[pennyannie]

Hello Bofen and welcome to the forum :

Have you ever been prescribed T4 - Levothyroxine as this is the easiest of all the thyroid hormone replacement options to manage :

You could self source Levothyroxine but first off I would try and get T4 prescribed and get into the NHS system to initially get the help and support you require from the medical mainstream.

No thyroid hormone replacement works well until your core strength vitamins - especially those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

Having optimal vitamins and minerals I also ran a TSH, T3 and T4 blood test so I had some bench mark results to start from and I started NDT on 1/2 grain and worked up in 1/4 grain weekly increments, monitoring myself on blood pressure, pulse and temperature twice daily.

With NDT you must go low and slow and preparation is key, do you have any blood test results and ranges to share with forum members?

I'm with Graves Disease and post RAI thyroid ablation in 2005 and was immediately put on T4 - Levothyroxine which worked very well for me until around 10 years later which was when I started my research and finding this forum was a big turning point for me.

I started looking after myself in late 2018 as my surgery and hospital refused to prescribe anything other than Levothyroxine, I take Thyroid S, and am much improved.