Needing opinions on last lot of results of thyroid function test

[Polo22]

Have various results on My GP, GP has been trying to reduce thyroxine forever, even when I said I had been fine on dosage for years. Eventually agreed to reduction. My last lot of numbers was 0.81 mu/L serum TSH, 22.3 pmol/L serum free T4. Shameful I know but I have never really understood the numbers. Have a few deficiencies at moment iron, B12, folate , magnesium so just trying to cover all bases and be proactive, God knows GP's aren't. Thanks for reading, any input appreciated

[SlowDragon Administrator]

Just testing TSH and Ft4 is completely inadequate

How much levothyroxine are you currently taking

How much levothyroxine were you taking before dose reduction

Do you always get same brand levothyroxine at each prescription

What vitamin supplements are you currently taking

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

plus both TPO and TG thyroid antibodies tested at least once

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) 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.

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

Do you have autoimmune thyroid disease?

Recommended on here that all thyroid blood tests early morning, ideally before 9am 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 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/

Low vitamin levels usually directly linked to being under medicated

Low iron/ferritin and B12

Are you vegetarian or vegan

[Polo22 in reply to SlowDragon]

currently on 125mcg, had been on 150mcg for a long time. For years , a lot, was using Actavis . Years ago was given different brand 2 months on that brand destroyed me took 12/18 months to get back to normal. For the last 12 months maybe more been fighting with pharmacy, and seem to get random brands, rarely get whole dose in one brand. Seems to change constantly.

had thyroid removed 1995, goitre when investigated they thought it may be malignant so it all got removed.

Things started going wrong a few years ago, constantly tired, anxious, depressed, brain fog, generally buggered. Sore blistered tongue, nausea, weight gain, no concentration.

Had to demand bloods be done, FBC U& E, iron studies, B12 and folate, vit D, magnesium. Some done Dec 2020, repeated June 2021. Ferritin 2018 136.ug/L Dec 2020 107.0 ug/L.

Only ever had TSH and T4 checked never had others done.

Vit D def, total 10.0nmol/L, B12 is dropping Dec 20 372. ng/L June 21 354.0ng/L folate Dec 20 11.2ug/L , June 21 2.7ug/L. Ferritin April 18, 136.0 ug/L Dec 20 107.0 ug/L. Magnesium 0.82 mmol/L no date assume it was last June. have iron study numbers too but realise this is turning into War and Peace,

They recently told me I now have type 2 diabetes and my cholesterol has got higher, and have an increased BP , wanted to start my on statins, hypertensives and metformin. I have refused. Sorry its so long, tried to go through your reply and answer your questions.

Oh yes been taking Vit D, and SI B12. Not vegan or veggie, don't eat a lot of red meat,

[SlowDragon Administrator in reply to Polo22]

So exactly what vitamin supplements are you currently taking

When was this test result from?

Vit D def, total 10.0nmol/L

Vitamin D deficient

GP should have prescribed LOADING dose vitamin D

That’s 300,000iu in total over 6-8 weeks and then retest at end of the prescription

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

GP will often only prescribe to bring vitamin D levels to 50nmol. Some CCG areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

When was vitamin D last tested

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7. One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

Government recommends everyone supplement October to April. Did you supplement before diagnosed as deficient

gov.uk/government/news/phe-...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Polo22]

Low folate and low B12

B12 is dropping

Dec 20 372. ng/L

June 21 354.0ng/L

folate

Dec 20 11.2ug/L ,

June 21 2.7ug/L.

As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help maintain B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many thyroid patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

healthunlocked.com/thyroidu...

How another member saw how effective improving low B vitamins has been

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Polo22]

Important to maintain all four vitamins at optimal levels to get best conversion possible of Ft4 and Ft3

optimal vitamin levels are

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate and ferritin at least half way through range

Serum B12 at least over 500

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

Activis now renamed Accord

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

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

Thousands upon thousands of U.K. Thyroid patients forced to test privately to make progress

Testing thyroid and vitamin levels once year minimum

Testing TSH, Ft4 and Ft3 6-8 weeks after and dose change or brand change in levothyroxine

[Polo22]

So just checked on My GP, my memory is really awful at moment. July 2021 Colecalciferol 20,000 unit capsules take one twice weekly for 7 weeks, given 15 caps. then by otc 800 IU Vit D daily long term. June 21 given folic acid 5mg tabs one daily for 3 months. Have been self injecting B12 every other day, about 5 or 6 weeks. Have not had any further blood tests since last June, Have been taking some Bladder wrack for iodine and magnesium supplements, recently run out of stuff so need to re stock supplements. Not happy to start metformin or hypertensives as the antidepressants I had been prescribed apparently cause blood glucose problems and increase insulin resistance, so I stopped them. Weaned myself off, didn't go cold turkey. Thanks for all this info,, I have a lot of reading to do haven't had any repeat bloods following on from treatment, they don't seem keen to do them. will have to get assertive, currently using a vit D spray,

[SlowDragon Administrator in reply to Polo22]

Have been taking some Bladder wrack for iodine

Iodine is never recommended for anyone on levothyroxine

Levothyroxine contains all the iodine you need (apart from, possibly, very long term vegans)

Never supplement iodine unless tested and found deficient and even then must be under care of an iodine specialist

Iodine can make thyroid conditions much worse

nhs.uk/medicines/levothyrox...

Is there any food or drink I need to avoid?

There are some foods and drinks that do not mix well with levothyroxine:

drinks containing caffeine, like coffee, tea and some fizzy drinks, can reduce the amount of levothyroxine your body takes in. Leave at least 30 minutes after taking levothyroxine before you drink them.

calcium-rich foods, such as milk, cheese, yoghurt and broccoli, can reduce the amount of levothyroxine your body takes in. Leave at least 4 hours between taking levothyroxine and eating calcium-rich foods.

soya in food and supplements may stop levothyroxine working properly. If you regularly eat soya or take soya supplements your doctor might need to do extra blood tests to make sure you're getting enough levothyroxine.

kelp (a type of seaweed) can contain high levels of iodine, which sometimes makes an underactive thyroid worse. Do not take supplements containing kelp if you're taking levothyroxine.

[Polo22 in reply to SlowDragon]

Oh my, just as well I kept forgetting the bloody stuff. Thanks for info, you live and learn. Really appreciate your advice, an absolute Godsend

[SlowDragon Administrator in reply to Polo22]

Vitamin D

July 2021 Colecalciferol 20,000 unit capsules take one twice weekly for 7 weeks, given 15 caps. then by otc 800 IU Vit D daily long term.

Very unlikely 800iu is anywhere near high enough dose vitamin D with thyroid disease

Test twice year when supplementing vitamin D

vitamindtest.org.uk

Everyone is different as to how much they need

Aiming to maintain vitamin D at around 80nmol and around 100nmol maybe better

Many members find they need 2000-4000iu daily …..probably needing more in winter than summer

Test now and then at end of September

[SlowDragon Administrator in reply to Polo22]

High cholesterol levels are directly linked to being hypothyroid and suggest your dose levothyroxine needs fine tuning, or vitamins aren’t optimal, and/or low Ft3

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

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

If necessary get GP to specify brand on prescription

Come back with new post once you get TSH, Ft4 and Ft3 tested

Suggest you wait at least 6-8 weeks since stopping iodine.

[Polo22 in reply to SlowDragon]

Thank You, will get in touch with GP after I have made a list of my demands, 😆. So Actavis is what worked well for me in past, I will ask to go back to 150mcg and for Accord/Actavis. Should I get him to order bloods first do you think? Should I try and get him to order TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies and get vitamin D, folate, ferritin and B12 ? Anything else ? Just can't thank you enough,

[SlowDragon Administrator in reply to Polo22]

Request that GP add that you need Accord brand of levothyroxine at each prescription

Also boxed as Northstar or Almus…..50mcg and 100mcg tablets

Very unlikely GP can get full thyroid testing done….but you can ask.

My last lot of numbers was 0.81 mu/L serum TSH, 22.3 pmol/L serum free T4

How much levothyroxine are you currently taking?

Was test done early morning and last dose levothyroxine 24 hours before test?

What’s the range on Ft4 result…..looks like Ft4 is already over range

First step is test correctly, always get same brand levothyroxine at each prescription and improve vitamin levels ……

[Polo22 in reply to SlowDragon]

I currently take 125mcg, test was done about 10 am, I normally take meds about 06.30 maybe 7 am. I usually don't take meds before testing although GP never advised this. In fact I think I asked one time and was told to take meds as usual. Might see about proper testing through the links you posted and then ask for change , specified brand and check again once established.