Thyroid UK
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Hi first post

Hi, this is my first post.

I was put on 25mcg levothyroxine in December 2017, I am now on 50mcg as per current results. I have been told the antibodies go down with levothyroxine and so I don't need to be retested for 10 months.

I went to GP with symptoms of fatigue, bloating, constipation, breathlessness, neck swelling and never thought I would be hypothyroid or iron deficient or anaemic. I have noticed no change in my symptoms at all and I am currently on the waiting list to be seen by endocrinology. Is this what I should be doing? Thank you!

Diagnosis

TSH 44 (0.2 - 4.2)

FT4 10.2 (12 - 22)

On 25mcg levothyroxine

TSH 5.6 (0.2 - 4.2)

FT4 13.8 (12 - 22)

TPO antibodies 804.5 (<34)

Ferritin 22 (30 - 400)

Folate 4.1 (4.6 - 18.7)

Vitamin B12 293 (190 - 900)

Vitamin D 30.6 (25 - 50 deficient)

6 Replies
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Can you add your results from before starting on Levo and recent results from after 6-8 weeks on 50mcgs

Have you had vitamin D, folate, ferritin and B12 tested too? Can you add results and ranges on these

Also do you know if you have Hashimoto's also called autoimmune thyroid disease, diagnosed by high thyroid antibodies.

If not had thyroid antibodies tested ask GP to do so at next test

50mcg is only a starter dose. It should be retested after 6-8 weeks and increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Nice guidelines saying how to initiate and increase. Note most patients eventually need to be on somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

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Thanks! These are now added. Is this not Hashimotos?

Reply

Yes it's definitely autoimmune thyroid disease (Hashimoto's)

TPO antibodies are higher than 34 (by some way!)

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

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 and gluten 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

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...

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Ferritin 22 (30 - 400)

Folate 4.1 (4.6 - 18.7)

Vitamin B12 293 (190 - 900)

Vitamin D 30.6 (25 - 50 deficient)

Reply

So what has GP prescribed if anything?

Ferritin is below range. You need full iron panel and likely iron supplements, possibly an iron infusion

Post iron panel results if you have them

Folate is below range and B12 is low. You really need full testing on this for Pernicious Anaemia before starting B12 injections

Folic acid supplements should not be started until 48 hours after first B12 injection

Ask advice on getting GP to test and treat on

healthunlocked.com/pasoc

Vitamin D is much too low and needs improving to at least 80nmol, but many find around 100nmol is good

Better You vitamin D mouth spray works well as avoids poor gut function. Perhaps try 3000iu twice daily for 6 weeks and then once daily for another month. Retest via vitamindtest.org.uk £28

You will need ongoing maintenance dose too. Retesting twice yearly

Gp will most likely only prescribe 800iu (not enough)

Detailed supplements advice on Low vitamins due to under medication

healthunlocked.com/thyroidu...

Reply

Hi Mands1

I have Hashimoto's & if you are not going gluten free already, then I can highly recommend it. Best thing I ever did.

It was hard at first, went through the whole 'I can't do this! I'm missing out , poor me'. Would sulk over it, feeling hard done 😤However

I'm far less bloated, tummy feels flatter, I'm less lethargic.

I also take L-glutamine (with pre&probiotics & enzymes included in it) as this looks after your gut & helps with repair.

I also take Vits & mins that I'm deficient in & they've made an incredible difference.

Hopefully one of the fab experts here can post you with advice on amounts of Vits/mind to take as you've posted your results with ranges.

I don't feel confident yet to do so, sorry.

I do wish you good health.

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