Advice following Neurology appointment in March - Thyroid UK

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Advice following Neurology appointment in March

Nemesis123 profile image
3 Replies

Trans-thoracic ECHO cardiogram revealed normal dimensions of TH LV with preserved LVEF (superior to 55%) preserved right heart dimensions

Is this good? only just told a 24 hour cardiac holter is to be sent from my neurologist appointment I had in March (obviously delayed due to pandemic). Had forgotten about the appointment follow up entirely.

Thankyou

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Nemesis123
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SlowDragon profile image
SlowDragonAdministrator

Are you currently prescribed any levothyroxine

Previous posts clearly show you have autoimmune thyroid disease also called Hashimoto’s and should have been started on levothyroxine over a year ago

healthunlocked.com/thyroidu...

See different GP and request new blood tests or test privately

What vitamin supplements are you currently taking...if any?

High TSH, high thyroid antibodies and below range Ft4 show you are clearly hypothyroid

See flow chart on top of page 2

gp-update.co.uk/Latest-Upda...

Pins and needles is extremely common hypothyroid symptom

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after each dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

High B12 can be caused by taking any multivitamins........or if not taking any supplements other B vitamins being too low (functional B12 deficiency)

Low B1 (thiamine) is very common with Hashimoto’s

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Nemesis123 profile image
Nemesis123 in reply to SlowDragon

Thank you for reply. I am being treated now for hypothyroid. Started on 25mg levo, and following blood test 50mg levothyroxine. Took a long time to convince GP. It was upon my neurologist insistence to treat it. I may have posted in wrong place as trying to work out why it was necessary for me to have this cardiac holter test if above stated normal. Very hard to get info at the moment from GP or neurologist department. Fun and games eh

SlowDragon profile image
SlowDragonAdministrator in reply to Nemesis123

When was dose increased to 50mcg (standard starter dose)?

Bloods should be retested 6-8 weeks after each dose increase

Also important to test vitamin levels regularly

our thyroid controls our metabolism

When on levothyroxine this doesn’t top up failing thyroid....levothyroxine replaces it, so it’s important to slowly increase dose

As an example....if, when perfectly healthy, your own thyroid made the equivalent of 125mcg levothyroxine....and this metabolism is controlled by pituitary sending messages - TSH (Thyroid stimulating hormone)

Then as your thyroid starts to fail (usually due to autoimmune thyroid disease) ....you might get diagnosed when your thyroid has reduced output to roughly equivalent of 75mcg levothyroxine

Pituitary has noticed there’s a drop in thyroid hormones in the blood....(that’s Ft4 and, most importantly, the active hormone Ft3) ....so to try to make more thyroid hormone ...pituitary sends out stronger message to thyroid - TSH rises up

When GP starts you on 50mcg ....initially you feel a bit better ....as you have 75mcg from your own thyroid and 50mcg levothyroxine

But (here’s the bit some GP’s don’t understand)....levothyroxine doesn’t “top up” your own thyroid output.....well it does very briefly....but the pituitary very soon “sees” the levothyroxine in the blood....and TSH starts to drop

So at the end of week 6 ....TSH has dropped a lot. Your thyroid takes a rest ....has a holiday

So at this point you are now only mainly using the 50mcg levothyroxine....which is actually a dose reduction down from managing on 75mcg from your own thyroid before you started on levothyroxine

So you start to feel worse .....and are ready for next 25mcg dose increase in levothyroxine

Modern thinking ....and New NICE guidelines suggests it might actually be better to start on higher dose .....but many medics just don’t read guidelines ....

and many patients can’t tolerate starting on more than 50mcg and need to increase slowly.

Starting on 50mcg and stepping dose up in 25mcg steps, retesting 6-8 weeks after each increase.

But we still very often need to increase up to full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Aim is to bring TSH down under 2.5 as absolute maximum.

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Come back with new post once you get next blood test results after 6-8 weeks on 50mcg levothyroxine

Also important to always get same brand of levothyroxine, once you work out which brand suits you best

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