Under active thyroid

[Lhasa14]

Hi could anyone help , my arms and legs feel heavy and weak , I’m on levothyroxine of 100 per day , have asked my doctor to check it again after changing my dosage but they say they don’t need to now for another 12months , not feeling good and not sure if can have these feelings if dosage is wrong

[fuchsia-pink]

Do you have your last blood results? You are legally entitled to them without giving a reason, although it's usually easiest to say "for m records" or register for on-line access. Then you can see exactly how you are doing - and how much (or more likely how little) has been tested.

Your GP is sort-of correct in that the usual MINIMUM amount of blood testing is every 12 months - but it's pretty lazy not to re-test more often, and in fact it SHOULD be re-tested 6 - 8 weeks after a dose change, so he's actually wrong about that if you've only recently moved to 100 mcg a day.

Or it may be easiest to get FULL testing done privately - and test TSH, free T4 , free T3 and key nutrients - ferritin, folate, vit D and B12, as if these haven't been tested before it's quite likely that you may need supplements. There's 20% off Medichecks tests today - and other discounts on the main Thyroid UK website.

SeasideSusie does great tips on how (and when) to do a private test x

[Lhasa14 in reply to fuchsia-pink]

Thankyou , I’ll try and find out my results

[SlowDragon Administrator]

How long have you been on 100mcg

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

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

This retesting continues until you feel well and levels are stable

What are your most recent results

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

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

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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

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 by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies 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

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

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

[Lhasa14 in reply to SlowDragon]

Thanks for your reply , changed my dosage in august as said they had over medicated me as was on 125 and that’s when they reduced to 100 . Don’t always have the same brand of levothyrixine , at the moment they are called aristo but never the same ones

[SlowDragon Administrator in reply to Lhasa14]

First step

Get the actual results and ranges on all your previous test results

If you have them already add them here

If not, come back with new post once you get copies

Just testing TSH is completely inadequate

Do you always get thyroid test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Work out which brand levothyroxine suits you best and make sure you ALWAYS get same brand

Are you lactose intolerant?

Aristo and Teva are the only lactose free tablets in U.K.

Obviously absolutely ESSENTIAL to get FULL thyroid and vitamin testing done 6-8 weeks after ANY Dose change or brand change in levothyroxine

[SlowDragon Administrator in reply to Lhasa14]

Request/insist that your thyroid levels and vitamin levels are tested as it’s more than 8 weeks since dose was changed

Or if GP remains difficult/obtuse test privately

ESSENTIAL To test TSH, Ft4 And Ft3 together and test vitamin levels

If not already had thyroid antibodies tested request they are tested too

[SlowDragon Administrator]

Many people find Levothyroxine brands are not interchangeable.

Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems.

Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets

Accord only make 50mcg and 100mcg tablets

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

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

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

New guidelines for GP if you find it difficult/impossible to change brands

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Lhasa14]

Thanks for your reply , I have had accord brand before but it’s never the same it’s what the pharmacy give me when I pick up my prescription . I’ll contact my doctor and ask them to recheck my levels again but don’t think they will so I’ll probably have to pay