Advice starting NDT medication now: Hello there... - Thyroid UK

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Advice starting NDT medication now

Optimal profile image
4 Replies

Hello there!

I posted a month or so ago. My Acella NP Thyroid (2 grain) arrived in the post this morning and could really use advice re starting doses, times of day to take medicine, and basal temperature testing (is this necessary?). I'm feeling a bit nervous to begin taking it as I've been on Levothyroxine for 12 years!!

As I mentioned in my previous post, I was diagnosed with Hashimoto's Thyroiditis aged 30 and have been on levothyroxine (100mcg a day) for the past 12 years. My TSH has nevertheless fluctuated, especially post-partum, and even when I am 'euthryoid' I have still had the classic symptoms including insomnia, very cold hands and feet, brain fog, anxiety and very low energy etc, especially during winter. I have had other autoimmune issues: vitiligo and urticaria although these have come and gone, as well as eczema.

After a stressful event in the Summer, this winter been a disaster for my health: on 30th November my TSH was 8.9 (FT4: 17) and half my hair had fallen out, which is now diagnosed as Alopecia Areata. My dose was increased to 125mcg, which I am currently taking.

At the beginning of January I had a private blood test while I was abroad including FT3 (note slightly different reference levels):

TSH 0.62 [Ref: 0.4 - 4]

Free T3 4.5 [Ref: 3.5-6.5]

Free T4 19.2 [Ref: 10-20]

On 6th Feb back in the UK I was again 'euthyroid' (TSH 0.46; FT4 17.5). I talked to my GP about taking NDT but he had never heard of it although he's quite open minded but he wanted to give me Setraline (anti-anxiety medication) instead. I think NDT seems like a better way to go for now although I'll have to have that conversation with him next time!

Thanks so much for your help!

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Clutter profile image
Clutter

Optimal,

I would reduce Levothyroxine to 50mcg and introduce 1 grain NDT divided into 2 doses, 1 in the morning with Levothyroxine and the second at bedtime. If you feel okay with it after a couple of weeks you can drop the Levothyroxine and increase NDT to 2 grains divided into 2 doses, morning and bedtime.

Optimal profile image
Optimal in reply to Clutter

Ok, thanks. So I should basically get a pill cutter and divide the 2 grain pill into four at the beginning I.e 0.5 grain each. I have some 50 mcg Levothyroxine pills already. I'll see how that goes!

SlowDragon profile image
SlowDragonAdministrator

As you have Hashimoto's are you on strictly gluten free diet?

Have you had vitamin D, folate, ferritin and B12 tested recently?

If not get GP to test

Add results and ranges if you have them already

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first plus vitamin tests

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Optimal profile image
Optimal

Hi Slow Dragon!

Thanks for your advice and I totally agree that gut health is an important piece in this.

I've been working with an integrative doctor in Connecticut via skype (who used to live in Leicester) to improve on my gut health so I did the Whole 30 diet for a month and took probiotics (Sacchromyces Boulardi).

I have been fully gluten free since last October although to be honest, don't feel significantly better. I did the coeliac blood test although by that time I'd mostly given up gluten so unsurprisingly it came back negative. I also gave up dairy and legumes at that time since they both caused me gut pain when I tried to reintroduce them.

My last full blood tests showed (30th Nov):

Serum vitamin B12 level 619 ng/L [220.0 - 700.0]

Serum folate level 8.1 ug/L [2.6 - 17.3]

Serum ferritin level 38 ug/L [10.0 - 420.0]

My Vit D was in range in 2016 so my GP wouldn't test that again, although I'm now taking 100ug a day plus K2. I'm also taking a Vit B-complex and fish oil. And Chinese herbs twice a day to support the immune system. And Apple Cider Vinegar/ warm lemon water in the morning or before a big protein meal or iron supplementation to raise stomach acidity...I'm definitely considering buying Isabella Wentz's book...

The other aspect that she suggested to focus on was to try and identify the trigger for my thyroid and alopecia which we think was probably a combination of PTS and taking the contraceptive pill in my 20s. I'm now getting counseling support for the PTS. I'm really hoping that all this will help as I'm really so tired of living this half life.

xx

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