help with gp changing dosage of thyroxine - Thyroid UK

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help with gp changing dosage of thyroxine

andepande profile image
7 Replies

my GP did regular yearly bloods last year and dropped my thryroxine ., since November they have dropped them twice . I went into see the gp to ask about dosage as I was feeling unwell , tiredness , brain fog stomachache issues . My last blood test

Serum TSH 0.56 normal range (0.38-5.33)

Serum T4 15.7 normal range (11.5-22.7)

My T4 in the past has always been 19/20

TSH has always been between 0.01-0.04

I didn’t have racing heart rate , didn’t feel jittery , panicky or any of the symptoms for overactive .

is it worth going to see a specialist in this field to sort out . Or is there another test I can ask the gp for to sort it out .

Thank you

andepande

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andepande
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7 Replies
tattybogle profile image
tattybogle

Hi . the evidence you need when argue-ing for GP to put dose back up despite low TSH is here :

healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

it's an easy argument to win if TSH is over 0.04 ... rather more tricky if it's lower than 0.04

so ....this post has links to research showing why TSH is relatively lower when on levothyroxine:

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

Hope that is some use.

andepande profile image
andepande in reply totattybogle

I’ve had a read and got totally lost and understanding it a little confusing at the best of times thing can go over my head 🫣 . Thank you I will re read until I grasp the information.

tattybogle profile image
tattybogle in reply toandepande

in that first one..... go down replies to near the end .... find one from me that starts " Do you need to worry about it ?.....is keeping your TSH a little bit higher and still feeling ok a realistic option for you ? ...."

this link should take you to somewhere near it : healthunlocked.com/thyroidu...

on that reply there is a list of posts where we are discussing the issues , these may be an easier place to start while you get your head round it all .

Buddy195 profile image
Buddy195Administrator

I’m not surprised you are feeling unwell, as your medication was lowered unnecessarily. Many practitioners still wrongly dose by TSH alone, when they should be looking at FT4/ FT3. I’m hoping the material tattybogle has provided will help you push for an increase with your GP.

SlowDragon profile image
SlowDragonAdministrator

welcome to the thyroid forum

Presumably, as you have Pernicious Anaemia which is autoimmune, your hypothyroidism is also autoimmune…..ie Hashimoto’s

Essential to test vitamin D, folate, ferritin and B12 as well

Never agree to dose reduction based on just TSH

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)

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

Many, many thyroid patients will have low TSH when adequately treated.

You may need to see thyroid specialist to get dose increased back up

But first get FULL thyroid and vitamin testing and get vitamin levels optimal

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations

thyroiduk.org/contact-us/ge...

andepande profile image
andepande in reply toSlowDragon

Thank you I’ll look into this and yes autoimmune I think as it’s not really be looked at they Just put me on meds and left me to it 🫣

Lottyplum profile image
Lottyplum in reply toandepande

Hello+welcome. After we moved was at a different surgery+it all went down hill. For me to function well+not be clogged with constipation I needed my T4 up in the 19-21 bracket. The GPs reducing my Levo big time resulted me ending up in Surgical unit in agony. Never again. I upped my levo, got in touch with private Endo+now on T4/T3 combo as I don't convert well at all! The ignorance of GPs re thyroid makes my blood boil! What I've learned from this forum has been life changing - even as a 75 yr old! Don't let your health be ruined by their ignorance!!😖

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