Ideas: Hi Everyone 👋 This is my first post. I've... - Thyroid UK

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CarpieDiem profile image
CarpieDiem
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Hi Everyone 👋 This is my first post.

I've been on thyroxine for about 20 years and used to be on 175 but for the past 10 years approx 125!

I have been asking my GP to higher it - but to no avail.

I'm just so tired yet I don't sleep, my weight has gone up by 5 stone, depressed, to name just a few things!

Has anybody got any tips for me.

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CarpieDiem
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helvella profile image
helvellaAdministratorThyroid UK

How do you time your blood draws with respect to taking levothyroxine? And time of day?

helvella - Scheduling Blood Draws

Factors to consider when choosing time for blood draws. Includes links to several documents/webpages and previous HealthUnlocked posts.

Last updated 12/08/2024

helvella.blogspot.com/p/hel...

Do you have any blood test results you could share? If you have an NHS app, you might be able to access them there. Or ask a receptionist to print them out.

Make sure you include the reference intervals (ranges).

Do you always get the same make (formulation) or does that change as well?

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK.

I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.

helvella - Thyroid Hormone Medicines - UK

The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes injectables and descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, Dictionary of Medicines and Devices (dm+d), etc. PLUS how to write prescriptions in Appendix F.

dropbox.com/s/bo2jzxucgp9hl...

CarpieDiem profile image
CarpieDiem in reply to helvella

Thank you so much for the information I will read and digest

Jaydee1507 profile image
Jaydee1507Administrator

Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.

You are not alone with this happening. Often GPs only go by your TSH result which is far from the full picture. There are a few things that it helps to look at and sometimes it pays to get a private blood test if GP cant or wont test a full thyroid panel and key vitamins.

Do you have a copy of your latest blood results that you can share with us? You are legally entitled to a printed copy of your results, ask at GP reception. In England you can get the NHS app and ask for permission to see your blood results on that by asking at GP’s reception.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

Do you do tests as per the protocol recommended here?

Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw, last T3 dose 8-12 hours before blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process).

Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo/T3 just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

Do you know if you had positive thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

CarpieDiem profile image
CarpieDiem in reply to Jaydee1507

Wow thank you to all - certainly alot of information to see my GP over.The blood test was for Serum TSH level = 4.03miu/L although I wasn't aware to have not taken levo for 24hrs? Would that make a massive difference?

tattybogle profile image
tattybogle

GP should be willing to increase dose if TSh is over 2/ 2.5.... if they say no ask them to read these recommendations for optimal treatment of hypothyroidism and reconsider : healthunlocked.com/thyroidu.... my-list-of-references-recommending-gps-keep-tsh-lower-in-range-

healthunlocked.com/thyroidu... explanation-of-what-*high-tsh-is-telling-us-when-our-ft4-level-is-normal-on-levothyroxine-the-shoe-size-analogy.-*-over-2.5-3-ish

SlowDragon profile image
SlowDragonAdministrator

with TSH over 4 you are on inadequate dose levothyroxine

TSH should ALWAYS be below 2 on levothyroxine

Highly likely low vitamin levels too when on inadequate replacement dose levothyroxine

Do you always get same brand levothyroxine at each prescription

Is your hypothyroidism autoimmune

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

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

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)

Essential to test vitamin D, folate, ferritin and B12

Lower vitamin levels more common as we get older

Politely request/insist GP tests vitamin levels or test privately

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

What is reason for your hypothyroidism

Autoimmune?

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test 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

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

come back with new post once you get results

SlowDragon profile image
SlowDragonAdministrator

Guidelines of dose Levo by weight

approx how much do you weigh in kilo

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or somewhere near full replacement dose (typically 1.6mcg levothyroxine per kilo of your weight per day)

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

bnf.nice.org.uk/drugs/levot...

Some people need a bit less than guidelines, some a bit more

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

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

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