Completely Confused !!!with hypothyroidism - Thyroid UK

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Completely Confused !!!with hypothyroidism

Spoticus profile image
6 Replies

My doctors put me on 50 mg levothyroxine around 14 years ago as they said my blood tests had been hovering for quite sometime & then obviously popped into the zone . I have been reading a few posts & realised I am woefully ignorant . The last couple of years I have been on & off iron tablets but because of the Covid situation no one seems to know why . Around the same time of the hypothyroid diagnosis I was told I had angina & was put on statins & aspirin . I’m also on blood pressure medication which has heightened in the last 4 years & Copd which has also nosedived since the start of the covid situation. I have asked the nurse plus the pharmacy how I should take all this medication & they have all said in the morning at the Same time ? I had decided to check out Vitamins because of tiredness, restless legs , cramp, joint pains etc but each time they mention don’t take if you have heart problems or medication for hypertension or hypothyroidism. I suppose My Question is , is it all down to the hypothyroidism as my dosage for all these years has remained at 50 mg . Talk about Brain fog , any advice would be much appreciated.

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes, highly likely you are woefully under medicated

50mcg levothyroxine is only a STARTER dose

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.

Link re access

healthunlocked.com/thyroidu...

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

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

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

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 and last dose levothyroxine 24 hours before test

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

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

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Spoticus profile image
Spoticus in reply toSlowDragon

Thanks for the reply I will get the information on my blood tests from the Surgery & come back to you for advice .

SlowDragon profile image
SlowDragonAdministrator

High cholesterol is linked to being under medicated for thyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Restless legs frequently low magnesium and/or low iron

Joint pain low vitamin D

First step is to get copies of your most recent blood test results and ranges

2nd step get FULL thyroid and vitamin testing done

Add any results you have or come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator

The aim of levothyroxine is to increase the dose slowly upwards in 25mcg steps until TSH is ALWAYS under 2

Most people when adequately treated will have TSH around or under one

Essential to regularly retest vitamin levels and supplement to maintain optimal vitamin levels

Low vitamin levels are CAUSED by being hypothyroid

When hypothyroid we frequently have low stomach acid, this leads to poor nutrient absorption and low vitamin levels as direct result

Low vitamin levels tend to lower TSH…..so important to maintain optimal vitamin levels

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

Having been left under medicated a long time it can be difficult to tolerate increasing dose

First step often to improve low vitamin levels

Hylda2 profile image
Hylda2

Can I ask why you are on aspirin? If you need an anticoagulant then Warfarin or one of the newer tablets a much safer option.

Spoticus profile image
Spoticus in reply toHylda2

Hi Hylda at the time my Angiogram showed plaque on a bend in my artery, just in one place but the Doctor I saw said if I had a problem with it in the future a stent would not be possible & that statins & aspirin was the way to go . Did freak me out a bit , although I was feeling unwell 5years or so later and I had another angiogram & more heart tests which all came back normal and the angiogram was exactly the same so told to carry on as I had been.

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