Hashimotos Encephalopathy? Disturbances of cons... - Thyroid UK

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Hashimotos Encephalopathy? Disturbances of consciousness with high antibodies

HealthySam profile image

I have hashimotos with high antibodies >1300 so off the scale. In the past 6 months I have been experiencing what I can only describe as ‘not here’ moments which last for about 30-60 seconds - disturbances of consciousness. I could be for example washing the dishes and can still continue with what I’m doing but am not totally conscious so fighting to bring myself back to full consciousness if that makes sense. I’ve read something about Hashimotos Encephalopathy (HE) and whether the disturbances of consciousness are related to this? If anyone has any experience of this would be grateful for advice.

16 Replies
RedApple profile image
RedAppleAdministrator

HealthySam, What you describe is not uncommon when thyroid hormone levels are not optimal.

What medications are you currently taking? Have you had a recent thyroid test? If yes, please post the results (i.e. actual numbers with ranges).

HealthySam profile image
HealthySam in reply to RedApple

Hi thanks for replying

I am on 25mg Levothyroxine - Doctor point blank refuses to up the dose but have an appointment with an endocrinologist in a few months. My results ( follow the rule of not taking a dose before blood test and on fasted stomach)

TSH 3.64 (0.35-5.5)

T4 14 (10.30-21)

Free T3 4.4 (3.50-6.50)

TPA >1300 (0-60)

TTG 0.5 (0-6.90)

SlowDragon profile image
SlowDragonAdministrator in reply to HealthySam

Ft4 is only 34% through range

Ft3 only 30% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

When adequately treated most people will have Ft4 at least 60-70% through range and Ft3 at least 50-60% through range

Print out guidelines in my previous reply and request 25mcg dose increase in levothyroxine

Ask them to justify why they are not following guidelines

Thank you I think I will write a letter with all this information in thanks

SlowDragon profile image
SlowDragonAdministrator in reply to HealthySam

Just add links to NHS or NICE guidelines

Highlight relevant sections

Levothyroxine doesn’t top up failing thyroid, it replaces it.

SlowDragon profile image
SlowDragonAdministrator in reply to HealthySam

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

NHS England Liothyronine guidelines July 2019 clearly state on page 13 that TSH should be between 0.4-1.5 when OPTIMALLY treated with just Levothyroxine

Note that it says test should be in morning BEFORE taking levothyroxine

Also to test vitamin D, folate, B12 and ferritin

sps.nhs.uk/wp-content/uploa...

Aim is to bring a TSH under 2.5

UK guidance suggests aiming for a TSH of 0.5–2.5

gp-update.co.uk/SM4/Mutable...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

(That’s Ft3 at 58% minimum through range)

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor



please email Dionne at

tukadmin@thyroiduk.org

Thank you I will compile a letter with all of the information in it so hopefully will make them take action as feeling really rough.

RedApple profile image
RedAppleAdministrator in reply to HealthySam

HealthySam ' I will compile a letter with all of the information in it '

You might consider mentioning that referral to an endo is a waste of NHS resources when, fo a few pence a day, your GP could trial you on an increased does of levo to see if it helps to resolve your symptoms. There is plenty of room for movement in your test results for this, and GP should not be using your age (i.e. menopause) as a reason not to trial an increased levo dose.

RedApple profile image
RedAppleAdministrator in reply to HealthySam

HealthySam, In my opinion your GP is keeping you under medicated unnecessarily. This will almost undoubtedly be the cause of your 'disturbances of consciousness'.

SlowDragon has offered suggestions about approaching your GP to request an increase in levo. Please don't wait months for an endo appointment as this is affecting your life right here and now, and when you finally get to see the endo s/he may or may not be helpful anyway.

SlowDragon profile image
SlowDragonAdministrator

Previous post test results from July shows were very under medicated

TSH 3.34 (0.35-5.5)

T4 12.4 (10.50-21)

Free T3 4.4

TPO >1300

Previous results below when first

prescribed 25mg Levo as Dr said only slightly hypo (end May)

TSH 5.87 (0.35-5.5)

T4 10.3 (10.50-21)

Vit D 43.2 ( 30-50 May be inadequate)

Folate 8.27 (>5.38)

I always take the tests now in a fasted state.

Did you get dose increase in levothyroxine up to 50mcg

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

What vitamin supplements are you currently taking

As soon as we start taking levothyroxine, the feedback mechanism is affected and almost without exception, patients will need to increase dose levothyroxine slowly upwards in 25mcg steps until on, or near full replacement dose

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on 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.

Also here

cks.nice.org.uk/topics/hypo...

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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

You Need B12 and ferritin levels tested

Folate and vitamin D retested

Essential that all four vitamins are optimal when on levothyroxine

Have you had coeliac blood test done yet. If not, request this tested too

Hi I mentioned the nice guidelines to the Doctor when asking to increase the dose who responded we don’t do it like that! Tried a different doctor in the surgery who also told me my levels were fine so I would have to wait to speak to the endocrinologist in a few months. I’m already gluten free so the coeliac test they did wasn’t valid (didn’t know they were doing it so couldn’t start taking gluten to test)

Starting to loose hair have scalloped tongue, puffy face put on 3 dress sizes in the last year despite intermittent fasting (not at the moment) and eating healthily, all signs of under-dosing but they refuse to budge. Say that as I’m menopausal age 55 and last period March 2021 could be something else.

My vitamin D was slightly low so I supplement with Vit D and sunbathe and also take Selenium, Zinc, Vit C, Evening Primrose oil, B complex.

Am also dairy and soy free.

SlowDragon profile image
SlowDragonAdministrator in reply to HealthySam

Is this just local NHS endocrinologist you are waiting to see. Most are diabetes specialists

Or is it recommended thyroid specialist endocrinologist?

Roughly where in U.K. are you

Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

tukadmin@thyroiduk.org

Private endocrinologist initial consultation typically £200-£250

They would instruct GP to follow guidelines and increase dose levothyroxine slowly upwards in 25mcg steps

Strongly recommend getting full thyroid and vitamin testing done via Medichecks or Blue horizon to check vitamin levels

Scalloped tongue often low B12

Try another GP

Print out guidelines on TSH being under 2 to take to consultation or email copy to them

I got the list from Thyroid U.K. thanks and asked to be referred to someone on that list NHS which is local. The doctor refused to refer to an actual name but has referred to the correct location so hoping I get good treatment there. I’m in Cambs near Peterborough.

SlowDragon profile image
SlowDragonAdministrator in reply to HealthySam

Sent you a private message

Yes I have had these symptoms over the years too. I have recently had a lot of this as well. although I’m feeling so confused about my levels and my gp doesn’t give me a full break down of my test results so I’m at a loss. I’ve not been myself for a long time.

Update thanks for all the advice. I wrote a letter and asked for a ‘trial’ of 50mg from 25mg until my appointment with the endocrinologist and they have finally agreed. It seems putting it in writing helps. Thanks to everyone for your help.

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