Hashimoto's advice please: Hi, this is my first... - Thyroid UK

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Hashimoto's advice please

julsb profile image
5 Replies

Hi, this is my first post and I would be so grateful for any help/advice you can give me.

The story so far..... diagnosed with Hashimotos 8 years ago and for most of that time I've been on 100mg Levothyroxine but always felt rubbish, the main symptoms have been Insomnia, Fatigue, Brain Fog and Constipation.

This year my GP agreed to raise the dosage to 125mg but I didn't notice any difference so it was upped again to 175mg. This brought on a whole different set of symptoms, dizzy,shaky,losing weight and feeling as if I was about to pass out. My GP also referred me on to an endo but they refused to see me as they said my TSH and T4 blood results were normal. TSH 0.04 (no range given) and T4 18.

I'm now looking to take matters into my own hands and am keen to try NDT, any advice on this and can someone PM me where you get this from. I've just got blood test results back from Blue Horizon

CRP 0.10 Range <3.0

Ferratin 114.1 Range 20 - 150

Free T4 17.40 Range 12 - 22

Free T3 3.50 Range 3.1 - 6.8

TSH 3.75 Range 0.27 - 4.20

T4 Total 96.1 Range 64.5 - 142.0

Anti- Thyroidperoxidase abs 338 <34

Anti-Thyroglobulin Abs 80.3 <115

Vitamin B12 276

Serum Folate 16.63

Thanks

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julsb
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5 Replies
Clutter profile image
Clutter

Welcome to the forum, JulsB.

Was dose reduced from 175mcg when TSH was 0.04? TSH 3.75 indicates undermedication. FT4 17.4 isn't bad but could be higher, and FT3 3.5 is low in range.

You'll need to titrate Levothyroxine and NDT until you are on the required NDT dose. it's usual to start at half a grain (30mg) NDT and increase in half grain increments every 2 weeks until on 3 grains which should be held for 6 weeks and a FT3 test done to check levels. Reduce Levothyroxine by 50mcg for every half grain (30mg) NDT you introduce/increase.

Many members find adopting a gluten-free diet to be helpful in reducing Hashimoto's flares and antibodies.

thyroiduk.org.uk/tuk/about_...

chriskresser.com/the-gluten...

B12 276 is low in range, optimal is around 1,000. Supplement 1,000mcg methylcobalamin sublingual lozenge, spray or patches and take a B Complex vitamin to keep the other B vitamins balanced. Folate is good.

__________________________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

Heloise profile image
Heloise

Hi julsb, it's too bad he didn't try 150 first. That was a big jump but you probably needed some increase. I switched from Synthroid to Armour so long ago I can't remember the dose but you could probably do as Clutter suggests or even start with one grain since you are probably going to end up on more than one grain, possibly one and a half grain. I really doubt you will end up on three grains. I believe NDT is more efficient than Levo. I guess there are some who feel the switch should be done gradually but I didn't.

I'm not in the UK so I hope you get some referrals. I heard of a pharmacy today in the U.S. but there are European ones closer.

Start taking B12 and how are your vitamin D levels? You probably would profit by taking D3/K2.

I wish you success and think you are going to do very well on natural desiccated thyroid hormone.

RustyMary profile image
RustyMary in reply to Heloise

I wondered about vit D levels too. I didn't start to feel really well until my vit D levels started to improve, even after proper medication (levo, which works well for me) and a gluten and dairy free diet. Now, I feel great.

greygoose profile image
greygoose

Julsb, it's so blindingly obvious why you aren't feeling well, pity the 'expert' couldn't see it.

You aren't converting - as the others have said. Therefore, I'm not sure that NDT would be a good idea because it contains T4, and if you can't convert it, you're still going to have problems with it. The T3 content isn't enough on its own to make you well.

Also, you have Hashi's. Hashi's people Don't always get on very well with NDT because it can cause an antibody flare-up. But also, Hashi's people often have problems with conversion. Adding some T3 to a substantially reduced Levo might be a better option.

However, whatever you take, you still need optimal nutrients for your body to be able to use the hormone you're giving it. Whether it's NDT, or synthetic T4/T3.

You have very low B12 - dangerously low - which not only will give you symptoms that resemble hypo symptoms but could possibly be one of the reasons for you not converting.

If I were you, I would supplement with sublingual methylcobalamin, 5000 daily for a few months, then lower the dose to 1000. With that, you should take a good B complex (containing methylfolate rather than folic acid) to keep the Bs balanced.

If your doctor won't prescribe T3, for one excuse or another, and most of them won't, you could buy it yourself on-line.

Take care. :)

Eddie83 profile image
Eddie83

Hashimoto's is essentially an environmental health problem. Your doc should be advising you as to possible ways to get rid of it. At this point in time, the only clear connections between Hashi's and diet are gluten and artificial sweeteners. A general dietary clean-up should be your first step.

Putting you on 175mcg T4 is significantly over the full-replacement dose, unless you weigh around 100kg. I question the competence of a doctor who does this.

It does look like you need more T3. NDT or supplementary T3 is something you should do now.

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