Hypothyroidism problems

[Lo06]

Hi I’ve been diagnosed with hypothyroidism about 4 years ago started on 0.25mcg felt really ill felt ok for a while then felt low & achy pains etc so I’m now on 0.25mcg & 50mcg every other day. I’m trying to lose weight & it doesn’t seem to budge I’m feeling achy all over arms legs should I go bk to docs & explain this as I have also been deficient in vit D & B12 but this has been rectified any advice would be much appreciated 👍

[greygoose]

Sound like you're very under-medicated - and that wouldn't be surprising on such a low dose. Your doctor should have increased you to 50 every day. How long have you been on this rediculous dose?

Do you always get copies of your blood test results? It's your legal right to have a print-out. So, if you haven't got them ring reception and ask. Don't take no for an answer.

Are you sure your deficiencies in vit D and B12 have been rectified? When did you last have them tested?

[Lo06 in reply to greygoose]

Tbh I’m thinking about changing my doctors after all this covid .. I’ve been on this dose for over a year .. I haven’t had no bloods done this year bk in October was the last .. I will request my blood results as a print out & thanks for your advice 👍

[greygoose in reply to Lo06]

That sounds like a very good idea.

[SlowDragon Administrator]

Standard starter dose of levothyroxine is 50mcg unless over 60 years old

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

Dose of levothyroxine should be increased upwards in 25mcg steps after each blood test and as fast as tolerated

Guidelines on full dose replacement by weight is 1.6mcg per kilo of your weight

Most people need somewhere between 100mcg and 200mcg per day

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

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

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, best not mentioned to GP or phlebotomist)

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...

Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

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...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Add any results and ranges if you have them

Or come back with new post once you get results

[Lo06 in reply to SlowDragon]

Thank you so much 😊 x

[SlowDragon Administrator in reply to Lo06]

guidelines by weight might help push for dose increase

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

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 also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

How much vitamin D are you currently taking and what were most recent results?

[Lo06 in reply to SlowDragon]

I was on 2000 but now on 1000IU now 👍

[SlowDragon Administrator in reply to Lo06]

Suggest you retest vitamin D ...either alongside thyroid or can test separately here

vitamindtest.org.uk

[SlowDragon Administrator in reply to Lo06]

Did you get vitamin D tested?

[Lo06 in reply to SlowDragon]

No I did ask & told my symptoms but I think they assume because I’m on 1000iu that I’m ok

[SlowDragon Administrator in reply to Lo06]

So you will need to test yourself

[Lo06 in reply to SlowDragon]

How? I already told them all my symptoms

[SlowDragon Administrator in reply to Lo06]

Thousands upon thousands of U.K. patients forced to test vitamin D, thyroid and vitamins privately

Here’s the link to test vitamin D via nhs postal kit

vitamindtest.org.uk

Or alternatively NHS testing here

(currently temporary delay sending out kits )

monitormyhealth.org.uk