Advice please: I was diagnosed with underactive... - Thyroid UK

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Advice please

maddiemoon profile image
8 Replies

I was diagnosed with underactive thyroid about eight months ago, being positive for Anti-TPO antibodies. I was prescribed 25mcg Levothyroxine which was upped to 50mcg Levothyroxine after a couple of months. I've just had another blood test and asked to be tested for vitamins/iron etc as suggested on here. My symptoms have been recurrent mouth ulcers, sore throat, thigh and shin pain and fatigue. My results show very low Vitamin D, and they've prescribed pills for this.

What I'm wondering is whether the Vitamin D supplements will sort these issues or whether I should be asking for an increase in Levothyroxine as well to get it down nearer the 1.0 optimum mark mentioned on here. Here are my results, no antibodies or T4/T3 figures given this time.

Serum Vitamin D <20 range 80.00 - 150.00

TSH 3.34 range 0.35 - 4.94

Comment - Euthyroid or adequate replacement. Rarely patients with pituitary/hypothalamic hypothyroidism can have a normal TSH.

Serum ferritin 191 range 20.00 - 204.00

Serum iron level 13.1 range 4.40 - 27.90

Serum folate 9.5 range 3.10 - 20.50

Vitamin B12 348 range 187.00 - 883.00

B12 comment - B12 result does not completely exclude deficiency if clinical picture strongly suggestive.

Any advice would me most welcome.

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8 Replies
Clutter profile image
Clutter

Maddiemoon,

You are undermedicated to have TSH 3.34 on 25mcg and should 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 0.2 - 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 peroxidase antibodies are positive for autoimmune thyroid disease (Hashimoto's). There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

VitD 20 is severely deficient. How much vitD3 have you been prescribed?

B12 348 is in a bit of a grey area. If you have many of the symptoms of deficiency in b12deficiency.info/signs-an... go to healthunlocked.com/pasoc for advice as they're the experts on B12 deficiency.

Ferritin, iron and folate are fine.

maddiemoon profile image
maddiemoon in reply to Clutter

Thanks Clutter for your response. I've been prescribed Aviticol 20,000 capsules for 7 days, 2 capsules a day, and then Theical-D3 1000mg/880 unit daily with a retest in May. Trouble is I've been to six pharmacists today and none of them have the Aviticol in that strength, seems to be a problem with the manufacturer. So I've had to phone the doctors to see if they can prescribe something else instead. Just want to get started on them to be honest.

Clutter profile image
Clutter in reply to maddiemoon

Maddiemoon,

Not sure your GP is prescribing a big enough loading dose. Your GP should refer to local guidelines or the cks.nice.org.uk/vitamin-d-d...

My GP prescribed 2 x ProD3 20,000iu daily x 14 followed by 1 x 2,000iu daily x 8 weeks to raise vitD from <10 to 107.

Make sure you take vitD 4 hours away from Levothyroxine.

maddiemoon profile image
maddiemoon in reply to Clutter

Thank you. That's really helpful. Did you notice a big difference after getting your Vitamin D level up?

Clutter profile image
Clutter in reply to maddiemoon

Maddiemoon,

Yes, I did, about 6 weeks in. I had difficulty sleeping because of pain in my hip and knee joints and that completely resolved.

maddiemoon profile image
maddiemoon in reply to Clutter

That's good to know it helped with your joint pains. Many thanks for your help.

SlowDragon profile image
SlowDragonAdministrator

Ask GP for full testing on low B12 for Pernicious Anaemia.

Especially if you have any low B12 symptoms

b12deficiency.info/signs-an...

Levels may improve with 25mcg increase in Levothyroxine dose. But definitely keep an eye on B12 and folate. They work together

Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

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

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

Your vitamin levels are low and need improving to help Thyroid hormone work well

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

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...

maddiemoon profile image
maddiemoon in reply to SlowDragon

Many thanks SlowDragon. That's really helpful. I will look at those links and investigate the connection with gut function. Just been diagnosed with diverticulitis so it might be relevant.

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