Hello, any help welcome: Hi all,I've been told I... - Thyroid UK

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Hello, any help welcome

cheeseandonioncrisps profile image

Hi all,I've been told I have an underactive thyroid recently after feeling very tired and achy for a few months, and having a blood test.

No treatment as yet, seems more tests are to follow.

I've become much more tired, a bit weepy ( not like me at all😔).

And, horror of horrors, I'm gaining weight, when, prior to this, my attempt at weight loss, calorie and carb counting, exercise, healthy eating etc, was working.

I'm 69, 4ft 11in. Usually very energetic, dancing round the kitchen with a glass of red on a Saturday eve while hubby and I cook dinner, one of my gentle pleasures.

I'd really appreciate advice on managing this, and if there are any steps I can take to get my mojo back.

Thanks for reading my little tale of woe. 😄

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cheeseandonioncrisps
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13 Replies
SlowDragon profile image
SlowDragonAdministrator

welcome to the forum

You will usually need 2 separate sets of blood tests at least 6 weeks apart before diagnosis

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

First thing is, do you have any actual blood test results?

if not it’s a good idea 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

patients-association.org.uk...

healthunlocked.com/thyroidu...

In reality some GP surgeries still 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.

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 tested

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

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

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Common to need to improve low vitamin levels with supplements

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high TPO and/or high TG 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.

Significant minority of Hashimoto’s patients only have high TG antibodies (thyroglobulin)

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 that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test (and once you start on levothyroxine ….last dose levothyroxine 24 hours before test )

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

Find out what GP has tested this time

Request any missing tests done at next test

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

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/signs-and-sym...

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toSlowDragon

Hello and thank you for such an in depth reply.I've looked online for test results.

The only dates I can see are 27th June 24, and that test said normal, but a month ago I got a call from the nurse, telling me I had high cholesterol and low thyroid.

The later test was because I had asked for help, as I feel so tired.

How can I be told low thyroid one day, and then see a normal result a month later?

SlowDragon profile image
SlowDragonAdministrator in reply tocheeseandonioncrisps

Normal…..if Thyroid results are within range …..even if right at bottom of range …then results are classed as “normal “

Essential to test TSH, Ft4 and Ft3

ALWAYS test early morning, ideally before 9am and only water between waking and test

Autoimmune thyroid disease (hashimoto’s) thyroid results can change dramatically from day to day ….or even hour by hour

Frequently vitamin levels are low

High Cholesterol is linked to being hypothyroid

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.

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toSlowDragon

Thank you. I'll keep waiting for more results.

PurpleNails profile image
PurpleNailsAdministrator

Welcome to forum.

One of the best things you can start doing is obtain a copy of keep records of blood test results.

Ask practice receptionists for a printed copy of results with ranges or set up online access to results if possible.

Drs don’t always complete a full thyroid test & often will “tick off” anything result in range. There can however be a considerable difference between being in range and what optimal for an individual.

For full thyroid function you need TSH, FT4 & FT3. TPO & TG antibodies, also important to test folate,ferritin B12 & vitamin D.

Many use private companies to complete a full test as NHS rarely test FT3 & Nutrients. See what has been tested so far.

If FT4 & or FT3 under-range or TSH over range 2x 3 months apart or over 10 replacement T4 (levothyoxine) can be prescribed. Doctor may start on 25mcg & it will be slowly increased. 50mcg standard starter dose but doctors are more cautious if over 60.

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toPurpleNails

Thank you for your reply.As this is very new to me please forgive my ignorance.

I've just looked at my results online, but it's only showing 27th June. I did not fast as it didn't say I should.

This says thyroid normal, however, last month I got a call from the nurse saying I had high cholesterol and low thyroid.

I'm very confused, and feel so tired and achy, I'd really like to get a handle on why I'm feeling so low.

PurpleNails profile image
PurpleNailsAdministrator in reply tocheeseandonioncrisps

Do you have actual results & lab range? What items were tested?

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toPurpleNails

I'll bring up the online stuff again and write it down properly.I'll see if I can find the original result too.

Please bear with me. And thanks again.

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply tocheeseandonioncrisps

9th may 24. Fasting tests for tiredness included B12 ok, and ferritin ok. Cholesterol a bit high.TSH

5.60 mlu/l

(0.38-5.33)

27th June 24, non fasting test for tiredness ( to be repeated in 6 months).

TSH

2.52 mlu/ l

( 0.38-5.33)

Peroxidase was negative.

I have no idea what any of this means though.

Thank you.

SlowDragon profile image
SlowDragonAdministrator in reply tocheeseandonioncrisps

GP hasn’t given actual results of B12 or ferritin - you are legally entitled to results

No folate or vitamin D

NHS won’t test thyroglobulin antibodies as your TPO antibodies are negative

No Ft4 or Ft3

Just testing TSH is pointless

Suggest you test FULL thyroid and vitamins yourself privately

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toSlowDragon

Fantastic information,Thank you

I'll look at private testing now, unless you have any advice on where to go?

SlowDragon profile image
SlowDragonAdministrator in reply tocheeseandonioncrisps

I gave you full details of private testing options and why it’s important to test in morning in my first reply here

Medichecks is usually the cheapest

You must test Thyroglobulin antibodies. NHS won’t because TPO tested negative

cheeseandonioncrisps profile image
cheeseandonioncrisps in reply toSlowDragon

Oh yes, I remember, sorry, I'm still navigating round this forum, my first time using anything like this.I'll find that post and follow your advice.

Thank you.

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