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Thyroid UK
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recommended to come here from pernicious anaemia community

hi I am new, my first post is on the pernicious anaemia community page. I tested positive for intrinsic factor antibodies. I am being treated for hypothyroid diagnosed in 2012 and I take 25mcg levo. a list of my symptoms are below.

swelling in neck and in lymph glands

difficult swallowing

dry skin

feeling sick

dizziness

sluggish digestion

hair loss

tiredness

weight gain

pins and needles

dry and gritty eyes

ears ringing

feeling cold

burning in hands and feet

splitting nails

low energy

heavy periods

thanks for reading

DEC 2017

Serum TSH 6.8 (0.2 - 4.2)

Serum FT4 12.9 (12 - 22)

Serum FT3 3.4 (3.1 -6.8)

7 Replies
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Welcome to the forum, LVO51.

You are undermedicated to have TSH 6.8 and FT4 and FT3 low in range 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. The Thyroid UK office opens on 3rd January.

You should have a follow up thyroid test 6-8 weeks after increasing Levothyroxine. Arrange an early morning and fasting (water only) blood draw when TSH is highest, and take Levothyroxine after your blood draw.

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

Heavy periods can be due to low iron/ferritin. Ask your GP to check ferritin and vitamin D in addition to B12 and folate as hypothyroid patients are often deficient in minerals and vitamins.

Reply

Have you always only had 25mcg dose of Levothyroxine or has it been reduced?

The standard starter dose is 50mcg. Bloods retested 6-8 weeks after any dose change and increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range.

Your significantly under medicated. Your vitamin levels are dire and must be improved

Make an urgent appointment asap. You need 25mcg dose increase and blood testing for coeliac disease too

You MUST have B12 injections more frequently

Ask for vitamin D to be tested, extremely likely to be too low

What about ferritin? Have you had iron infusion and taking 3 x daily ferrous fumerate?

Folate, are you taking folic acid supplements

Presumably you have high thyroid antibodies? This is Hashimoto's also called 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

Low vitamin levels stop 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 is very poorly understood

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

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...

Vitamin advice from SeasideSusie on similar low vitamins due to under medication

healthunlocked.com/thyroidu...

2 likes
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thanks. I have always been on 25 mcg, I am prone to sweats.

tpo antibodies 778 (<34)

tg antibodies 375.3 (<115)

Reply

vitamin d was checked as deficient, taking 800iu. not taking folate and iron infusion done in 2016, not taking supplements

Reply

Get them all retested

800iu is highly unlikely to be anywhere near enough vitamin D

How low was level when you started supplementing? Were you prescribed loading dose (high dose) initially?

After iron infusion you should have been monitored and given ferrous fumerate 3x daily supplements to keep levels up if they were dropping

Folic acid supplements should not be started until after first B12 injections.

You must be tested for coeliac

Sweats etc are due to dire vitamins preventing thyroid hormones working

1 like
Reply

as far as I know all were retested a week ago. gp has called me since to discuss. vitamin d when first checked was 33.5 (25 - 50 vitamin d deficiency. supplementation is indicated) no loading dose, straight on 800iu

Reply

look up your local CCG guidelines

Eg

oxfordshireccg.nhs.uk/profe...

You can see you should have been told to take 2 x 800iu

But even that's unlikely enough with Hashimoto's

Most of us self treat with vitamin D mouth spray

3000iu or 5000iu daily and retest after 2-3 months.

Vitamindtest.org.uk £28 postal kit

Testing twice year until work out how much. You need to keep level up around 100nmol

1 like
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