Underactive Thyroid

[CanineGreens]

Hi, my levothyroxine was put up to 175mg daily in December & I’m starting to feel tired all the time again. I don’t feel like I’m getting anywhere with this medication & have put on weight. Don’t know what I should be doing next as I feel I’m on a high dose of Levothyroxine, any suggestions would be much appreciated. Been reading about Armour Thyroid but don’t know how I would go about changing onto this or if it’s the right thing to do. TIA

[SeasideSusie Remembering]

Hi CanineGreens and welcome to the forum.

The first thing to do is post your latest results so that we can see whether you are anywhere near optimally medicated. We need to see results, including reference ranges (these vary from lab to lab so it's essential to have the ranges to be able to interpret your results) for the following@

TSH

FT4

FT3

FT3 is not always carried out but it really is essential to have this test done because T4 is a storage hormone (Levo is T4) and it converts to T3 which is the active hormone that every cell in our bodies need. Even if FT4 is at a good level it doesn't mean that FT3 is, and it's low FT3 that causes symptoms.

It's also important to have optimal nutrient levels for thyroid hormone to work properly. Low levels or deficiencies can bring their own symptoms which can overlap with symptoms of hypothyroidism. So it's also necessary to test the key nutrients:

Vit D

B12

Folate

Ferritin

Post whatever results you have to start with. If you have online access to your results you should find all the information there. If your surgery doesn't offer online access then just ask the receptionist for a print out of your results, it's our legal right here in the UK to have them without charge or question.

If you haven't had all the essential tests done we have recommended private labs which do them.

[CanineGreens in reply to SeasideSusie]

My last labs done December only checked Vitamin D - 68.4TSH - 2.03

HBA1c - 35

I received these after a few calls to the GP

I sent away for a private test & results were

B12 - 44

TSH - 0.55

T4 free - 15.37

T3 free - 5.1

Hope these are understandable. Not sure if there’s anything else.

[SlowDragon Administrator in reply to CanineGreens]

Please add ranges (figures in brackets after each result)

Was test done early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Are you vegetarian or vegan

[CanineGreens in reply to SlowDragon]

Yes test done at 8am & before tablets. Not a vegetarian or vegan.

Results

[SlowDragon Administrator in reply to CanineGreens]

No ferritin result?

FT4: 17 pmol/l (Range 12 - 22)

Ft4 is only 50.00% through range

FT3: 5.1 pmol/l (Range 3.1 - 6.8)

Ft3 is 54.05% through range

So good conversion

You might possibly need small increase in levothyroxine

Eg

200mcg 3 days week and 175mcg 4 days week

Approx how much do you weigh in kilo

[CanineGreens in reply to SlowDragon]

No don’t think a ferritin test was done. I’ll phone doctors tomorrow. I’m currently about 13 st 4 & about 5ft 6 so definitely overweight but can’t seem to do anything to lose the weight.

[SlowDragon Administrator in reply to CanineGreens]

Who was private test company

They usually include ferritin test

[CanineGreens in reply to SlowDragon]

It was with Forth. Was unsure who to go with so it was just something I saw online.

[SlowDragon Administrator in reply to CanineGreens]

List of private testing options and money off codesthyroiduk.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...

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/

Retest vitamin D twice year when supplementing

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

[CanineGreens in reply to SlowDragon]

Fab, thanks

[Anon_77 in reply to SlowDragon]

wow I didn’t know if this amazing test with the discount thanks !!!!

[SeasideSusie Remembering in reply to CanineGreens]

CanineGreens

Your Active B12 is dire. Below 70 suggests testing for B12 deficiency according to Viapath at St Thomas' Hospital:

viapath.co.uk/our-tests/act...

Reference range:>70. *Between 25-70 referred for MMA

There is a link at the bottom of the page to print off the pdf to show your GP.

Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

[SeasideSusie Remembering in reply to CanineGreens]

CanineGreens

Can you please add the reference ranges so that your results can be interpeted, as ranges vary we can't interpret accurately without them.

When were the private tests carried out?

Were the tests done as we always advise:

* No later than 9am. This is because TSH is highest early morning and lowers throughout the day.

In fact, 9am is the perfect time, see first graph here, it shows TSH is highest around midnight - 4am (when we can't get a blood draw), then lowers, next high is at 9am then lowers before it starts it's climb again about 9pm:

healthunlocked.com/thyroidu...

* Nothing to eat or drink except water before the test - certain foods may lower TSH, caffeine containing drinks affect TSH.

* If taking thyroid hormone replacement, last dose of Levo should be 24 hours before blood draw, if taking NDT or T3 then last dose should be 8-12 hours before blood draw. Adjust timing the day before if necessary. This avoids measuring hormone levels at their peak after ingestion of hormone replacement. Take your thyroid meds after the blood draw. Taking your dose too close to the blood draw will give false high results, leaving any longer gap will give false low results.

* If you take Biotin or a B Complex containing Biotin (B7), was this left off for 3 - 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Vitamin D - 68.4

Presumably the unit of measurement is nmol/L and not ng/ml?

Are you taking a D3 supplement? If so what dose and brand?

Do you take any other medication or supplements?

[CanineGreens in reply to SeasideSusie]

Yes Vit D is nmol/L also take Sertraline for depression & a vit & magnesium supplement. I take my tablets in the morning but take antidepressant at same time as the doctor hasn’t told me not to take them together. Just receiving this from yourself now & someone else’s reply so I’ll start tomorrow taking them on their own. Private tests done last week.

Thanks so much for all this info, much appreciated

Vitamin

[SlowDragon Administrator in reply to CanineGreens]

So don’t increase dose levothyroxine

Start taking levothyroxine correctly….either first thing in morning…..or last thing at night…on its own at least 2 hours away from any other medications or supplements

Retest in 6-8 weeks

Meanwhile get GP involved re testing for Pernicious Anaemia and extremely low B12 plus folate

[CanineGreens in reply to SlowDragon]

Thanks so much.

[SlowDragon Administrator]

Which brand of levothyroxine are you currently taking

Do you always get same brand levothyroxine at each prescription

Many people find different brands are not interchangeable

Teva brand levothyroxine upsets many people

Teva is only brand that makes 75mcg tablets

Important to take levothyroxine on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours

Some, like calcium, HRT, iron, magnesium, vitamin D need to be four hours away

[CanineGreens in reply to SlowDragon]

Teva for the 75mg & Aristro for the 100mg I also take

Vitamin tablets bottle

[SeasideSusie Remembering in reply to CanineGreens]

CanineGreens

That supplement isn't a particularly good idea.

It contains 1,000iu D3 which is not enough to raise your level, it's just about a maintenance dose for someone with a good level already. With a Vit D level of 68.4nmol/L you're looking at needing 3,000-4,000iu daily for 3 months then retesting.

No point in taking B6 on it's own unless you have a particular need for it. B vitamins should be kept balanced so a B Complex is better, but you may also need B12 by the look of your result (ranges needed as explained).

The magnesium is OK.

The zinc is oxide form which is generally used in sun creams and nappy creams. Zinc and copper should be balanced, we hypos tend to have one high and the other low, so we don't know which to supplement (if at all) unless we test first.

[CanineGreens in reply to SlowDragon]

Different brand most of the time

[SlowDragon Administrator in reply to CanineGreens]

Are you lactose intolerant as currently both brands are lactose free

As already mentioned, Teva upsets thousands of people

Work out which brand suits you best and ALWAYS get same brand levothyroxine at each prescription

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)

Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very long

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...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

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

Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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

REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex

[SlowDragon Administrator]

So Active B12 is EXTREMELY low

Anything under 70 needs investigation

Request GP test folate and B12 and testing for Pernicious Anaemia before starting on replacement B12 and vitamin B complex

You may need B12 injections

[CanineGreens in reply to SlowDragon]

Thanks so much for all the info.

[SlowDragon Administrator in reply to CanineGreens]

Are you on dairy free or gluten free diet

If dairy free, you will need to stay on lactose free levothyroxine

[CanineGreens in reply to SlowDragon]

No none of those.

[SlowDragon Administrator in reply to CanineGreens]

Both antibodies are low in this test

Have you had high thyroid antibodies in the past?

Or did you previously have RAI or thyroidectomy?

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 (Hashimoto’s or Ord’s thyroiditis)

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

Ever had ultrasound scan of thyroid?

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[CanineGreens in reply to SlowDragon]

Not been diagnosed with anything other than Underactive thyroid. Phoned doc today & she’s getting new bloods done but she was almost arguing with me when I was saying some of the stuff I’ve learned on here so I’ll wait to see what results come back & take it from there. It wasn’t a very pleasant call though & feel like she just wasn’t interested in anything I had to say. We’ll wait & see though. Thanks for all the info, much appreciated.

[SlowDragon Administrator in reply to CanineGreens]

NHS only tests and treats vitamin deficiencies

They are completely disinterested in the complexities of autoimmune thyroid disease

Low B12 or Pernicious Anaemia (autoimmune) common with Hashimoto’s

NHS tests serum B12

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

GP won’t think there’s an issue unless B12 below 200 ….or even until below bottom of range

healthunlocked.com/thyroidu...

Difficult and expensive to test for PA privately

Low iron/ferritin extremely common too