Advice please before Endocrinologist apt, thank... - Thyroid UK

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Advice please before Endocrinologist apt, thank you

Lotsofkids5 profile image
7 Replies

I was diagnosed with an under active thyroid in October '17 and prescribed 25mg levothyroxine. I continued to feel exhausted, achy, tearful and rundown, my blood was tested and my dose put up to 50mg. I returned to my GP in February and was told my bloods were 'normal'. I explained to him that I was feeling worse (sore throat since January, joints hurting, exhausted, extreme cold, hair starting to fall out etc etc) and he reluctantly referred me to an endocrinologist.

I pushed for new bloods to be taken and have asked for a print out; they are as follows:

Anti-TPO Antibodies 317 iu/ml (<34)

TSH level 12.54 mIU/L (0.27 - 4.2)

Free T4 level 18 pmol/L (12 - 22)

My apt is next Tuesday - any advice prior to this would be greatly appreciated...what should I expect from the apt? What questions should I ask? Should I push for any different blood tests or follow ups?

Thank you all in advance x

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shaws profile image
shawsAdministrator

You are woefully undermedicated. You should be angry with the GP for permitting you to suffer even more due to such a low dose - and the Endo for suggesting 25mcg when 50mcg is a starting dose.

The aim is sufficient thyroid hormones to bring TSH to 1 or lower which means a blood test every six weeks with a 25mcg increment of levothyroxine.

I would ask for a Free T3 blood test. The reason being it is T3 only which is needed to enter our millions of T3 receptor cells. Levothyroxine (T4) is to convert to T3 but you may be a very poor converter and without enough T3 we have symptoms. Antibodies can be reduced by going gluten-free.

p.s. on re-reading I see it was GP who prescribed 25mcg and has referred you to Endo, so hope he is good.

Lotsofkids5 profile image
Lotsofkids5 in reply to shaws

Many thanks for you reply; yes I am pretty angry but also very relieved that its not all 'in my head'! Am hopeful that my medication will be upped tomorrow and I will finally start feeling better soon :)

shaws profile image
shawsAdministrator in reply to Lotsofkids5

It does for many people :)

shaws profile image
shawsAdministrator

Tick off the symptoms you have and give GP a copy.

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

SlowDragon profile image
SlowDragonAdministrator

Standard starter dose is 50mcgs, not 25mcg.

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

Then dose should be increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range. Typically most patients eventually need between 100mcg and 200mcg

Bloods should have been retested 6-8 weeks after your dose was increased to 50mcg. Then dose increased by 25mcgs and whole thing repeated until TSH is around one.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

You high TPO antibodies confirm you have Hashimoto's also called autoimmune thyroid disease.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Highly likely to have very low vitamin D, folate, ferritin and B12 as result of being extremely under medicated

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)

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

Ideally ask endo for coeliac blood test first

Don't be surprised if endo dismisses gluten link

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

Your GP obviously clueless

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased by endo. Avoid Teva brand unless you are lactose intolerant

Lotsofkids5 profile image
Lotsofkids5 in reply to SlowDragon

Many thanks for your reply with all the helpful links. I will definitely try going gluten free and see if that helps :)

SlowDragon profile image
SlowDragonAdministrator in reply to Lotsofkids5

Ask for coeliac blood test first, just to definitely rule it out. Otherwise they often want you to go back on gluten for 6 weeks to do gluten challenge

If coeliac test was positive you have to stay on gluten rich diet until endoscopy, max wait 6 weeks

Majority are gluten intolerant not coeliac. So test is negative and can then go strictly gluten straight away

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