weird symptoms (or normal?) for underactive thy... - Thyroid UK

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weird symptoms (or normal?) for underactive thyroid

Padster60 profile image
9 Replies

I was diagnosed with UAT many years ago (around 12 years). I'm almost 60 now.

I've been on alternate 50mcg/75mcg for quite a few years but not been reviewed for around 5/6 years by an endo or even a GP.

I've recently had a nasty bout of labyrinthitis around August but this settled down a lot.

I'm currently experiencing jitters in my belly every day that makes me anxious and feel tired and fuzzy-headed.

My sleep isn't great either.

I am sent for routine blood tests but all they tell me at the blood clinic is 'its just routine' so I never know my scores.

Today I saw a paramedic who did some tests on me and will see a GP later.

I've also supposedly got osteoporosis and will have another dexa scan in a few weeks.

I'm not on any medication for the osteo but I feel this will be pushed into this.

I'm wondering whether the above may be related to under active thyroid or maybe I'm taking too much thyroxine now. It's so hard to work out and I am getting worried about this.

Any advice/insights would be welcomed.

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

First step is to get hold of existing blood test results

And then get FULL Thyroid and vitamin testing

Unless extremely petite likely you are not on high enough dose levothyroxine

Levothyroxine doesn’t “top up” failing thyroid, it replaces it so it’s essential to be on high enough dose

Being under medicated for thyroid, frequently results in low stomach acid, poor nutrient absorption and low vitamin levels as direct result

Osteoporosis can be result of being left on inadequate dose levothyroxine

Improving low vitamin levels is ESSENTIAL

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

Far too often only TSH is tested and is completely inadequate

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

 

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

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

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.

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

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am 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 and money off codes

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

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins 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

Only do private testing early Monday or Tuesday morning. 

Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

Padster60 profile image
Padster60 in reply toSlowDragon

Thank you, I used to be on this forum all the time & I guess I got complacent and forgot all the great advice. My endo discharged me when I told him I wouldn't reduce my dose to prevent osteoporosis as I was very poorly on less. He told me there was nothing he could do for me!! I am due to see GP in an hour so will endeavour to get some tests organised.

SlowDragon profile image
SlowDragonAdministrator in reply toPadster60

Come back with new post once you get old of recent test results from last few years

You might be astonished how little was actually tested

SlowDragon profile image
SlowDragonAdministrator

Anxiety is extremely common hypothyroid symptom

As is insomnia

Approx how much do you weigh in kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

Padster60 profile image
Padster60 in reply toSlowDragon

Hi I am 4ft 11" so am small, weigh around 8st 8. Not sure what that is in kilos.

SlowDragon profile image
SlowDragonAdministrator in reply toPadster60

54.4kg = 8st 8lb

Calculator on converting stones and pounds to kilo here

thecalculatorsite.com/conve...

54.4kg x 1.6mcg = 87mcg per day

That’s equivalent to 75mcg plus 1/2 a 25mcg tablet per day

87mcg per day = 609mcg per week

Currently you’re on 437mcg per week

Obviously guidelines are just that ….some need higher dose ….a few need lower dose

First step is FULL thyroid and vitamin testing

Book early morning test and last dose levothyroxine 24 hours before test

Essential to include Ft3 test alongside Ft4 and TSH

Padster60 profile image
Padster60 in reply toSlowDragon

Thanks for the info, appreciate it. Been to see GP, she said my thyroid bloods were all good in her records. She will give me some HRT for menopause symptoms.

SlowDragon profile image
SlowDragonAdministrator in reply toPadster60

You are Legally entitled to copies of your blood test results

Did you get printed copies of your test results from last 2-3 years?

Suggest you get hold of them BEFORE starting on HRT

Was last thyroid test done early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Just testing TSH is completely inadequate

Do you always get same brand levothyroxine at each prescription

EXACTLY what vitamin supplements are you currently taking

HRT frequently results in needing dose increase in levothyroxine

Is HRT a patch or pills

SlowDragon profile image
SlowDragonAdministrator

similar post by Poppycat999

and see replies to her as well in the 2nd post

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Come back with new post once you get previous results from receptionist

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