Considering self-treating with NDT. Advice and ... - Thyroid UK

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Considering self-treating with NDT. Advice and tips gratefully received

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7 years ago•8 Replies

I am 50 yrs old, a Brit living in The Netherlands.

I still have some hypo symptoms and I am thinking about self-treating with NDT, just not sure how much would be appropriate. Happy to hear from someone with experience.

Below are my 3 blood test results over the last 18months:

06/04/16 by GP in NL

TSH: 2.89 (0.27-4.2)

Free T4: 13.5 (12-22)

Vit D: 45.8 (75-100)

B12: 203 (145-569),

Folate: 21 (10.4-42.4)

26/09/17 by Bluehorizon in UK

TSH: 3.39 (0.27-4.2)

Free T4: 16.1 (12-22)

Free T3: 3.9 (3.1-6.8)

Total Thyroxine: 81 (59-154)

Thyroglobulin Antibody: 10.2 (0-115)

Thyroid Peroxidase Antibodies: 11.7 (0-34)

Saliva Cortisol test:

- waking 19 (6-21)

- 12pm 2.42 (1.5-7.6)

- 4pm 2.21 (0-5.5)

- bedtime - 2.35* (0-2)

26/01/18 by Bluehorizon in UK

TSH: 4.94* (0.27-4.2)

Free T4: 13.2 (12-22)

Free T3: 3.6 (3.1-6.8)

I have never had a ferritin test, but the Doctors (GP +2 haematologists who I saw for high platelets) assure me my iron levels are fine, going by Hb and Ht. All dismissed low B12 as a possible cause of my "very typical" B12 deficient symptoms, hence self-treating.

Since the first test, I supplemented daily with B12 5000mcg sublingual (and quickly felt loads better). I also daily take: magnesium, Vit D, B complex, fish oils, mulitvit for women 50+, Selenium (as 2-3 brazil nuts daily) and have tried to avoid wheat/gluten.

I am going through menopause, last period 6 months ago. Following Dr Peatfields book, I use progesterone cream which has helped with hot flashes.

For the past few months I have taken an adrenal supplement - Thorne adrenal cortex and ashwaganda, as had palpitations, body hair loss ++, feeling of inner shaking, to name a few. My body hair hasn't grown back, but the other 2 symptoms have gone.

Looking forward to hearing your advice.

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8 Replies

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SlowDragonAdministrator7 years ago

Your latest results show you need a dose increase.

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

Ask GP for 25mcg dose increase and retest in 6-8 weeks

There's no vitamin D test? Often very low despite supplements, unless on substantial dose. How much do you take?

Do you have Hashimoto's (high thyroid antibodies) if so you really need to try to be strictly gluten free.

Clutter7 years ago

DebraNL,

You are undermdicated to have TSH 4.94 with low FT4 and FT3 so ask your GP to increase dose. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.3 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email dionne.fulcher@thyroiduk.org if you would like a copy of the Pulse article to show your GP.

Thyroid antibody tests were negative for autoimmune thyroid disease (Hashimoto's).

There's no need to avoid wheat/gluten unless you are intolerant. If you are intolerant you should be 100% gluten-free as the smallest trace can upset you.

I grain (60-65mg) NDT is equivalent to 65mcg Levothyroxine. If you're not used to T3 it is usual to titrate Levothyroxine as you introduce NDT.

• in reply toClutter7 years ago

Thank you Clutter.

I have never had any treatment from my GP for Thyroid. I was kind of planning to treat myself with NDT. Or do you think its best to chat with GP first and see what they say? Is NDT preferable to levothyroxine or is there no difference between them?

Clutter• in reply to7 years ago

DebraNL,

There is a difference or else people wouldn't be expressing preferences for one or the other. It's a mistake to think one or the other is superior until you try them. NDT doesn't suit everyone.

I think you should see your GP for a prescription for thyroid replacement before you start selfmedicating. I don't know whether NDT is available in NL. In the UK you would be given Levothyroxine.

If you decide to self medicate start with half a grain (30-32.5mcg) NDT and hold for six weeks and have a thyroid function test including FT3 before increasing dose.

7 years ago

Clutter,

many thanks for the advice.

I have just checked on the Dutch equivalent to ThyroidUk and they say that the advise given to doctors is not to treat until TSH is > 6. Its the usual Dutch "wait and see how it goes" protocol. The medical advice states that with a TSH between 6 and 10, it frequently spontaneously normalises. The doctors also require you to have an elevated TSH in 3 consecutive blood tests before giving treatment, which would take another 6+ months (one test every 3 months).

I'll have a chat with my GP anyway and see what she says. Not very hopeful

Useful to know what starting dose for NDT and for how long. Thanks

helvella7 years ago

Your TSH results are similar to mine - before diagnosis. It was plotting them to show a near-straight line upwards that helped to make the diagnosis easy for me. If you have a spreadsheet program, it might be worth making a graph.

I agree with Clutter - better to have doctor on-side to start with. Also agree with no-one knowing which medication would be best until it is tried.

7 years ago

Thank you Helvella. I now have an appointment for Monday.

7 years ago

So quick update. I went to GP who said wait a bit then have another blood test which I have now had. I have been taking vit supplements for nearly 2 years so they are all good now.

TSH 3.42 (0.27-4.2)

Free T4 15.7 (12-22)

Ferritin 82 (13-150)

Folate >45.4 (8.83-60.8)

B12 1476 (145-569)

Vit D 140.3 (75-100)

LDL 2.75 (recommended <2.5)

So Gp won't treat Thyroid as I am normal, even though I have lots of symptoms.

Plan to start NDT tomorrow. I have some Thiroyd ready and waiting. Clutter recommended half a grain. What is the best time of day to take it and should I split it?