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Thyroid UK
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NDT THYROID S

I need advice on what I do next please.

Physical and mental fatigue particularly brain fog has gone a lot worse in last 12 months.

In last 4 weeks increased Levo from 75 to 125mcg and added 6.25mcg Unipharma T3 but felt worse .

2 days ago decided to stop Levo and T3 altogether and try NDT Thyroid S taking 1 60mg tablet at night but this morning brain fog is worse than at any time in 40 year history of this case.

Since Medichecks blood test Nov 2017 I have worked on B12 Folate Vit D and Iron but with no improvement.

Presently taking 3000mcg of B12 daily and 1000mcg of Folate.

Is it normal to feel so much worse after starting NDT or is it just because I am not suited to it.

I took up Blue Horizon special offer on genetic testing 2 months ago- particularly interested in D102- report states saliva test shows anxiety and depression in many cases with those taking T4, but this can be overcome with T4/T3 therapy. I have felt unwell for 41 years - received RAI in 1994 and only since then have I been on T4 so why was I unwell between 1977 and 1994 was it because of a malfunction of thyroid chemistry because I do not believe I had a blood test for the thyroid until 1992.

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60mcg of NDT simply cannot yet replace what you were taking in levo and t3

What you should have done was slowly swap 1/2tablet of NDT for 50 mcg of levo and then waited 3 weeks before swapping more

However if you post all your results it will help us fathom why your not well ...after RAI i very much doubt 75mcg or even 125mcg of levo would be an adequate dose

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Hello

Thank you for your reply.

I shall start taking 50mcg of T4 and 30 mcg of NDT as you suggest and decrease to 25mcg of T4 and increase to 60 of NDT in 3 weeks.

Do you have any idea what is the average dosage of NDT for someone who has had RAI or is everyone different.

If you would look at my profile you will see the results of all blood tests back to Jan 2015.

Thank you

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Everyone is different but RAI can really mess people up ..

Even with surgury after Graves my husband is on 5 grains of NDT but some people will be fine on 3grains ...it depends on so many things and everyone is different

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Hello

Thank you for your reply.

I will start again tonight with 50 mcg of T4 and 1/2 a tablet 30mg of NDT-stay on this for 6 weeks and then increase NDT to 60 mg. as recommended by Seaside Susie

I take it that 1 tablet is 1 grain which is 60mg.

If your husband is on 5 tablets then I have some way to go.

Thank you.

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Your correct 1 grain of NDT is 60mcg

And remember it does take time on NDT to feel really well because it seems NDT has to heal tissues before it makes you feel better ...much depends on how long ago the RAI was and how below par your body is plus what age you are

My husband has been on NDT for 12 yrs and is 75 and is fit and well ....all the years from age 28 were nothing short of hell especially after surgury and on levothyroxine

Reply

Your correct 1 grain of NDT is 60mcg

One grain of desiccated thyroid is either 60 or 65 milligrams (mg). Indeed, one grain of anything is 60 to 65 milligrams! :-)

(Many years ago, the exact conversion from grains to milligrams was an awkward number - some people/organisations/companies chose to round up to 65, others down to 60.)

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Thank you for your reply and advice.

I have been unwell since May 1977 from the age of 28 exactly the same as your husband I am now 68 years. The first time anyone thought about taking a blood test for the thyroid was in 1992 and when I read up on the symptoms I was convinced the NHS had cracked the case . At that time the internet was not that well developed and I do not think I had a computer then so I was not able to read up or communicate with other sufferers.

I started to faint in 1994 and decided to have RAI-This made me feel a lot worse -put on Thyroxine but because the blood test was showing within the range, I was discharged.

I have started to take 50mcg of T4 and 30mg of NDT in the last few days and will increase to 60 mcg in 3 weeks time . I shall persevere with NDT long term because it contains T1, 2, 3, and 4 - from what you say the remedial work to the tissues will take quite some time.

Thank you

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Some people are fine on one grain or a tiny bit more.

Requirements are, like everything else, individual.

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Are you really saying that someone with no thyroid is fine on 1 grain of NDT

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"I will start again tonight with 50 mcg of T4 and 1/2 a tablet 30mg of NDT-stay on this for 6 weeks and then increase NDT to 60 mg. as recommended by Seaside Susie"

I just want to clear up that I didn't recommend that. I didn't recommend what you should take at all, I said

"You need to decide what you want to do then stick to it for 6 weeks. But that's not going to help if you don't have enough Levo."

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For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 or NDT don't take in 12 hours prior to test, delay and take straight after

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

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Hello Slowdragon.

I have already had a Medichecks blood test in Nov 2017 and recent GP tests. All the results are showing in my profile.

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In last 4 weeks increased Levo from 75 to 125mcg and added 6.25mcg Unipharma T3 but felt worse .

2 days ago decided to stop Levo and T3 altogether and try NDT Thyroid S taking 1 60mg tablet at night but this morning brain fog is worse than at any time in 40 year history of this case.

I think you've made too many changes in too short a time, you're not giving enough time for things to stabilise.

Since Medichecks blood test Nov 2017 I have worked on B12 Folate Vit D and Iron but with no improvement.

Presently taking 3000mcg of B12 daily and 1000mcg of Folate.

Have you retested since then? Your November results were good, the only improvement needed was ferritin.

B12 1037 Range 181 to 910

Folate >24 range >5.40

Vit D 199 Range 75.00 to 150.00- received call from doctors whatever dose you are taking reduce - started on 10000iu reduced to 5000iu considering dropping to 1000iu per day

Ferritin 79 Range 22 to 322

Clutter advised that they were all good apart from ferritin would be better half way through range.

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Hello,

Thank you for your reply .

If I go back to 125 mcg of T 4 the present supply of levo from the NHS will run out very quickly . When I was discharged by the Endo in Nov 2017 I had been put on 75 mcg so the GP is continuing with that dosage- he is unlikely to increase without notification from an endo.

If I start taking 125 mcg of T4 and 6.25 of T3 should I continue with these dosages for 3 weeks and then decrease t4 and increase T3 to 13.

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Delboy

You need to decide what you want to do then stick to it for 6 weeks. But that's not going to help if you don't have enough Levo.

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Do you have enough Levo to stay on 100mcg for 6 weeks?

Or 75mcg/100mcg alternate days?

Always stick to same brand of Levo

plus 6.25 T3, which presumably you are self medicating

Have you reduced vitamin D dose, test result was very high

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I do not have enough T4 to last me 6 weeks only enough for 2 weeks.

I booked an appointment with my GP today but he cannot see me before the 22nd May.

I want him to refer me back to Endocrinology in Liverpool but to see a consultant recommended by Thyroid UKs local branch who is T3 friendly.

I shall put another electronic request through this evening for more T4 from my GP.

I am self medicating T3-

Thank you

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