Advice please: Hi I have recently being... - Thyroid UK

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Advice please

Trantesros profile image
7 Replies

Hi

I have recently being diagnosed with Hypothyroidism and have been taking a daily dose of Thyroxine (100mg) for the last 6.5 weeks. I still feel awful!

Can any of you lovely people give me any advice about vitamin supplements?

I already take a daily dose dose of vitamin D.

I have read about B12 being useful. Views on this please and can anyone tell me what exactly it does?

Many Thanks

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Trantesros profile image
Trantesros
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7 Replies
Hedgeree profile image
Hedgeree

Hi Trantesros,

Welcome to the forum 🙂

Did you start off on 100mcg of Levothyroxine? From my reading of the forum that's quite a high dose to start with 50mcg is the usual amount that's prescribed. Or if a person has other conditions they may start on 25mcg. I struggled with 25mcg and had to split that into tiny pieces and titrate up slowly.

What symptoms do you have? Also if you have any blood test results (and their ranges) post them here and others can advise you regarding vitamin D and B12.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

what were your thyroid and vitamin results BEFORE starting on Levo

Are you in the U.K.

which brand of levothyroxine are you taking

Retest 3-4 months after starting on high dose levothyroxine

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

Trantesros profile image
Trantesros in reply toSlowDragon

Thank you so much🙂for your reply.

My ferritin B12 and cortisol levels were all within the normal range.

Every other test was abnormal (bone profile, liver function, differential white blood count, HbA1c, urea & electrolytes, lipid levels and full blood count)

T4 was below reference limit at 2.1pmol/L

TSH was above high reference limit at >100

I believe that was why I have been started on 100mcg.

I take my Levo thyroxine in the morning but have considered switching to last thing at night as I feel very ropey in the mornings and tend to improve as the day goes on.

My query about vitamin supplements is really just about maximising my health as I still feel so rough in the mornings, have had neck and shoulder pain since starting the thyroxine, and lower leg pain, headaches, sore throats and fatigue which predate the medication.

I eat healthily and prior to the onset of the hypothyroidism exercised every day.

I am planning to contact my GP tomorrow to ask for an earlier than planned blood test and review of my medication ( ie not waiting for the 8 week mark it will be closer to 6.5 weeks ) but don’t know if I am being unrealistic in expecting to see more of an improvement in my symptoms when my baseline levels were so low.

Thanks again for your time and sharing of expertise.

SlowDragon profile image
SlowDragonAdministrator in reply toTrantesros

I feel very ropey in the mornings and tend to improve as the day goes on.

This is likely because adrenals (cortisol) is struggling to cope with sudden , relatively large initial dose Levo

My ferritin B12 and cortisol levels were all within the normal range.

Can you add actual results and ranges

No folate or vitamin D results?

Cortisol - what time of day was test done

Having started on relatively high dose you don’t really want to retest for 3-4 months

Approx how much do you weigh in kilo

Which brand of levothyroxine are you taking

How much vitamin D are you taking

If it’s a tablet…..Are you taking this at least 4 hours away from levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply toTrantesros

Helpful if your gender and age on your profile

Have you had thyroid antibodies tested yet

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

NHS only tests TG antibodies if TPO are high

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

greygoose profile image
greygoose

B12 is the nerve vitamin. But it won't do anything for you if you don't need it, same as all the other nutrients. You need optimal levels but more is not better and can be dangerous.

Therefore, you need to get them tested and only take what you need. Did you get your vit d tested before starting it, And are you taking it with vit K2-MK7 and magnesium? It won't do anything much without it's co-factors.

SlowDragon profile image
SlowDragonAdministrator

Low vitamin D

NHS Guidelines on dose vitamin D required

panmerseyapc.nhs.uk/media/2...

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Test twice yearly when supplementing

Can test via NHS private testing service

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7.

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Recipe ideas

bbc.co.uk/food/articles/mag...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

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