help to understand : I think I’ve asked before... - Thyroid UK

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help to understand

Tina51 profile image
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I think I’ve asked before that I don’t understand some of the queries here in that I’ve not been informed by GP how or why thyroxine is measured.

I’ve just had blood tests then given levo to take. Last year I was out on statins also and I lost 2stone in about 6 weeks, only half stone was intentional.

I then had tests, found gallstones but surgeons don’t want to touch as might cause greater problems.

I was then advised from being underactive I was not overactive.

GP etc discussed that as I’d been taken 100 mg for many years weight loss wasn’t due to a too high dose of Levo but he was eventually persuaded to reduce 100 to 75.

I’m now putting on weight and lots of my underactive symptoms are returning. I still have some 100 mg so do I just take or, I know, try and talk to my GP again.

I don’t understand here how contributor know what they are talking about and who they are gaining their info from?

I just feel lost and ill-informed. I research but confused as to why information from GP’s are not flowing and I’ve only seen a consultant pp thyroid once about 15 yrs ago which wasn’t informative .

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Tina51
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22 Replies
greygoose profile image
greygoose

I don’t understand here how contributor know what they are talking about and who they are gaining their info from?

For the most part I'm afraid they don't know what they're talking about, which is why they can't give you any information. You give information you don't have, and you can't explain what you don't understand yourself.

If you mean where they get their info from about you, then it's blood tests - although they don't understand them, either. Or, they 'consult' an endo, who is supposed to be a specialist, but isn't. Or, they rely entirely on the little bit of info they got in med school, which isn't very much. The rest they tend to make up as they go along.

Thyroxine is the thyroid hormone T4 - that is what you're taking, levo-thyroxine. They don't seem to know why they measure it themselves, because they rarely take any notice of it, they only look at the TSH - Thyroid Stimulating Hormone, a pituitary hormone. When a thyroid is working correctly, the TSH tells them when to make more and when to make less. But, when you're hypo, the TSH level can be confusing and inaccurate at best. However, when they were in med school, doctors were taught, by some misguided soul, that the TSH 'told them all they need to know'. No, it tells the thyroid all it needs to know, but the thyroid isn't working anymore, so the feed-back link - as it's called - doesn't work well and tells them next to nothing. So, that's why so many hypos stay unwell.

Do you always get print-outs of you blood test results? If not, you really should - it's your legal right to have one in the UK. You need to know exactly what is being tested, exactly what the results were, and learn to interpret them - we can help you with that. Your doctor would prefer you didn't know all that, because then you'd know more than him, so don't ask him. Ask at reception.

Last year I was out on statins also

So, I imagine your cholesterol was high? If so, then your Free T3 was more than likely too low. But, doctors would prefer you take statins because they prefer pushing drugs than hormones. They are scared rigid of hormones, which are pretty much harmless, but think dangerous drugs are OK.

I then had tests, found gallstones

Most hypos get gallstones, and most hypos have their gallbladder out. I can't imagine why surgeons thought that would make things worse. I've had mine out. It was a piece of cake. I've never had occasion to regret it.

I was then advised from being underactive I was not overactive.

Sounds like you have Autoimmune Thyroiditis - aka Hashi's. And that's one reason you need to see your blood test results, to see if your antibodies have been tested, because high antibodies indicates Hashi's.

he was eventually persuaded to reduce 100 to 75.

Who persuaded him? And why? Those are questions you have to ask him.

I’m now putting on weight and lots of my underactive symptoms are returning.

Of course they would. If you reduce levo, which is T4, the T3 will also reduce. And, as T3 is needed by every single cell in your body, if there's not enough to go round, it will cause symptoms, like weight-gain.

I still have some 100 mg so do I just take or, I know, try and talk to my GP again.

That's fraught with hazard because how long would your 'some 100 mcg' last? And what will you do when it runs out? You most certainly should talk to your GP, but first of all you need to know what you're talking about. And the first step towards that is getting hold of your blood test results for as far back as possible.

When you get your results, post them and the ranges (in brackets after the results) here and we'll explain them to you and answer any questions you have so that you can go back to your GP and talk informatively about increasing your dose back to where it was. In the meantime, don't hesitate to ask more questions, there will always be someone here that will know. And if they don't know, they will find out! Unlike doctors. :)

Tina51 profile image
Tina51 in reply togreygoose

Will do

SlowDragon profile image
SlowDragonAdministrator

How long have you been on 75mcg levothyroxine now

Which brand of levothyroxine is it

If it’s a single tablet it will be Teva brand and Teva is only brand that makes 75mcg

Teva upsets many people as it contains mannitol instead of lactose

First step is to get FULL thyroid and vitamin testing see exactly what’s going on BEFORE you change dose or brand of levothyroxine

GP might test TSH and Ft4……unlikely to test Ft3 …..but ask

Also request vitamin levels tested - vitamin D, folate, ferritin and B12

you also need thyroid antibodies tested at least once to see if the cause of your hypothyroidism is autoimmune

Do you know if GP tested thyroid antibodies when you were originally diagnosed

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

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

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...

Only do private testing early Monday or Tuesday morning.

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...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

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

SlowDragon profile image
SlowDragonAdministrator

Read about thyroid disease here on Thyroid U.K. website

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

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

Thyroid U.K. run this forum

Tina51 profile image
Tina51 in reply toSlowDragon

Hi thank you for all the support. I’ve read & reread the links and comments.

I called GP today and gave blood test this afternoon. Didn’t sleep at all last night worrying but GP has recommended a fuller blood test will be done to ensure nothing is being missed. Knowledge is power but I really didn’t need it today except to confirm lots of recurred symptoms. Thank you all much appreciated :)

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

Can you rebook for early morning test

thyroid test should always be early morning, ideally before 9am, only drink water between waking up and test and last dose levothyroxine 24 hours before test

This is patient to patient tip……Not discussed with GP (who will frequently deny it’s relevant)

Though NHS guidelines do state…..test early morning BEFORE taking your morning dose levothyroxine

Tina51 profile image
Tina51 in reply toSlowDragon

It’s 24 hours since last tablet & still on empty stomach thx

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

TSH (all most GP’s look at) as a circadian rhythm…..TSH is highest early morning and lowest after lunch

Hopefully they will also test Ft4 and Ft3 and all four variants

Tina51 profile image
Tina51 in reply toTina51

This was my last one, now awaiting results of todays I’ve removed my GP identity etc

Clinician viewed 18 Nov 2022

Result type Pathology

Tests Thyroid function test

Filed by Dr 21 Nov 2022 07:30

Result Abnormal, but expected

What you need to do Need to speak to doctor

Specimen

Specimen Type: Serum

Specimen Reference#: 1

Collected: 18 Nov 2022

Received: 18 Nov 2022

Provider Sample ID:

Pathology Investigations

Thyroid function test

Serum free T4 level 16 pmol/L [9.0 - 25.0]

Serum TSH level 0.06 miu/L [0.3 - 5.0]; Outside reference range

Tina51 profile image
Tina51 in reply toTina51

August results as requested, trying to get GP appointment but none for a month and every morning day appts are taken before I can get through …… NB had 4 tests made but as may be interlinked sent all results . I’m at a loss…

31 Jul 2023

Result type Pathology

Tests Tissue transglutaminase IgA level

Filed 04 Aug 2023 12:22

Result Normal

What you need to do No Further Action

Specimen

Specimen Type: Serum

Specimen Reference#: 1

Collected: 31 Jul 2023

Received: 31 Jul 2023

Provider Sample ID:

Pathology Investigations

Tissue transglutaminase IgA level < 1 U/mL [< 6.0]; Anti-tTG antibodies equals Coeliac Disease serology

If on gluten free diet Coeliac Disease is not excluded

Reflex testing is performed on suspected IgA deficiency

**Please note new reference range 01/12/2021**

type Pathology

Tests Haemoglobin A1c level

Haemoglobin A1c level - IFCC standardised

Filed by

Result Normal

What you need to do No Further Action

Pathology Investigations

Haemoglobin A1c level 5.7 % [4.0 - 5.9]

Haemoglobin A1c level - IFCC standardised 39 mmol/mol [20.0 - 41.0]; Please note changes in HbA1c reporting from 27/09/21

viewed 31 Jul 2023

Result type Pathology

Tests Full blood count

Result Normal

What you need to do No Further Action

Pathology Investigations

Full blood count

Total white blood count 4.3 x10^9/L [4.0 - 11.0]

Red blood cell count 4.32 x10^12/L [3.9 - 5.6]

Haemoglobin concentration 134 g/L [115.0 - 165.0]

Haematocrit 0.395 L/L [0.37 - 0.47]

Mean cell volume 92 fL [80.0 - 99.0]

Mean cell haemoglobin level 30.9 pg [27.0 - 32.0]

Platelet count - observation 182 x10^9/L [140.0 - 400.0]

Neutrophil count 2.17 x10^9/L [1.5 - 7.5]

Monocyte count - observation 0.37 x10^9/L [0.2 - 0.8]

Eosinophil count - observation 0.05 x10^9/L [0.04 - 0.4]

Basophil count 0.03 x10^9/L [0.02 - 0.1]

Lymphocyte count 1.68 x10^9/L [1.0 - 4.0]

Nucleated red blood cell count < 0.20 x10^9/L [0.0 - 0.2]; For further investigation of abnormal Full Blood Count

please see Haematology Referral Guidelines:

leicestershospitals.nhs.uk/...

(click Departments & Services > Haematology >

Haematology Referral

Guidelines).

If clinically urgent contact the Haematologist On Call.

Tests Urea and electrolytes

Liver function tests

Plasma C-reactive protein level

Thyroid function test

Acute Kidney Injury Staging

Serum total protein level

Serum ferritin level

Filed by

Result Satisfactory

What you need to do No Further Action

Pathology Investigations

Urea and electrolytes

Serum sodium level 142 mmol/L [133.0 - 146.0]

Serum potassium level 4.6 mmol/L [3.5 - 5.3]

Serum urea level 7.9 mmol/L [2.5 - 7.8]; Outside reference range

Serum creatinine level 75 umol/L [60.0 - 120.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres 69 mL/min/1.73m2; Urine ACR should be checked on at least an annual basis

for all individuals with CKD. NICE recommends the

Kidney failure Risk Equation kfre.co.uk to

predict the risk of endstage kidney disease in CKD

stages 3a to 5. KFRE is not valid in the presence of acute kidney injury.

Liver function tests

Serum albumin level 44 g/L [35.0 - 50.0]

Serum alkaline phosphatase level 61 iu/L [30.0 - 130.0]

Serum alanine aminotransferase level 16 iu/L [2.0 - 53.0]

Serum bilirubin level 25 umol/L [< 21.0]; Outside reference range

Calculated Globulin 24 g/L [15.0 - 30.0]

Plasma C-reactive protein level < 5 mg/L [< 10.0]

Thyroid function test

Serum free T4 level 14.4 pmol/L [9.0 - 25.0]

Serum TSH level 0.73 miu/L [0.3 - 5.0]

Acute Kidney Injury Staging 0; No AKI

Serum total protein level 68 g/L [60.0 - 80.0]

Serum ferritin level 115 ug/L [10.0 - 420.0]

tattybogle profile image
tattybogle in reply toTina51

just tagging SlowDragon for you so she will be notified of your replies with the results ... ( you replied 'to yourself ' so she won't have known you posted them . last week .. hence no replies .

if you had replied using the box directly under one of her comments , she would have got an 'alert'

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

So test was afternoon, so TSH would have been higher testing in morning

Last dose levothyroxine 24 hours before test ……so Ft4 result is accurate

FT4: 14.4 pmol/l (Range 9 - 25)

Ft4 is now only 33.75% through range so yes you are not on high enough dose levothyroxine

Suggest you increase dose levothyroxine back to 100mcg daily

How much do you weight in kilo?

What vitamin supplements are you currently taking

There’s no B12, folate or vitamin D results

Retest thyroid levels 6-8 weeks after increasing levothyroxine to 100mcg daily

Suggest you get FULL thyroid and vitamin testing done privately including thyroid antibodies privately via Medichecks or Blue Horizon

Tina51 profile image
Tina51 in reply toSlowDragon

although tested in afternoon I had not eaten since evening before. I don’t weigh myself. I’m 5’6.5”. I was told by GP thyroid was perfect so why isn’t it. I don’t understand.

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

Ft4 is too low

You have return of hypothyroid symptoms

Weight at 55kilo suggests you might initially need SMALL dose increase in levothyroxine

55kg x 1.6mcg Levo = 88mcg per day

75mcg plus 1/2 a 25mcg tablet = 87.5mcg

So request increase in levothyroxine to 87.5mcg daily (or as 75mcg and 100mcg alternate days)

Retest Thyroid levels 6-8 weeks after any dose or brand change in levothyroxine

Meanwhile get GP to test folate, B12 and vitamin D

Or if GP won’t test vitamin levels test yourself including thyroid antibodies at private test in 6-8 weeks

Many (most?) people on levothyroxine need to take daily vitamin D and daily vitamin B complex……but test FIRST before you start any supplements

Tina51 profile image
Tina51 in reply toSlowDragon

But why aren’t the doctors picking this up and also telling me everything is okay then taking more bloods to check that they aren’t missing anything? When I asked to be referred etc they said that intimated tgey are not doing their jobs. I’m lost. Shall I just show them your concerns?

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

no they hate the internet and especially forums

Ask to trial small dose increase in levothyroxine

Many thyroid patients need to fine tune dose

You were on 100mcg for years

Say you feel less well on 75mcg and slightly hypo

100mcg daily was too high

75mcg daily is too low

Try 87.5mcg daily

(or 75mcg one day and 100mcg the next day)

Always get same brand levothyroxine at each prescription if possible

Retest in 6-8 weeks

SlowDragon profile image
SlowDragonAdministrator in reply toTina51

But why aren’t the doctors picking this up and also telling me everything is okay

current understanding and treatment of thyroid disease by medics is often poor

There’s often poor understanding by medics as to how fine tuned some people need their replacement thyroid hormones

This is by far the busiest forum on Healthunlocked with almost 133,000 members, vast majority are in U.K.

Important to maintain OPTIMAL Vitamin levels for levothyroxine to work well. Test at least annually

Lower vitamin levels more common as we get older and more common if hypothyroid and not on correct dose levothyroxine

Many thyroid patients find they need to supplement vitamin D, magnesium and vitamin B complex continuously……but ALWAYS test before starting any supplements

Examples of private test results via Medichecks

healthunlocked.com/search/p...

SlowDragon profile image
SlowDragonAdministrator

NHS England Liothyronine guidelines July 2019

sps.nhs.uk/wp-content/uploa...

Page 9

Test for Deficiency of any of the following: Vitamin B12, Folate, Vitamin D, Iron

See page 13

1. Where symptoms of hypothyroidism persist despite optimal dosage with levothyroxine. (TSH 0.4-1.5mU/L)

also see last box on page 13

Test morning BEFORE taking levothyroxine

Tina51 profile image
Tina51 in reply toSlowDragon

I don’t take any vitamins??? I was 55kilos but weight is increasing.

Filicatlasy profile image
Filicatlasy

I think that you should go back to your GP and ask to be referred to the endocrinologist at your hospital responsible for thyroid. It sound like you might be at that stage with Hashimotos (an autoimmune thyroid condition) where you can fluctuate between hypo and hyper. You really need to ask for a print out of your blood results, then you can post them on here and get more advice. Thyroid can cause all sorts of symptoms including gallbladder and heart etc. The amount of Levi thyroxine can depend on all sort of things and there is a great reluctance in the UK to prescribe T4 with T3. At present I am on 230 mcg of Thyroxine and still suffer symptoms

Tina51 profile image
Tina51 in reply toFilicatlasy

I have posted Novembers test & yet to gain this last one as it takes about a week.

Tina51 profile image
Tina51 in reply toFilicatlasy

had the tests, got the results, discussed with physician, no Hashimotos, thyroid ok, no endocrinologist as they will just tell you GP is doing their job.

Now being tested for fibromyalgia & polimyalgia Didn’t get any feedback from yourselves after I posted latest results so I’ll just plod on 😌🙁

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