thyroid

[Disey]

would anyone consider that the above readings going back to 2017 might be the reason I’ve not felt well for a long long time. I’m waiting on results for a thyroid test I had done yesterday morning

[FancyPants54]

What results are the 2 columns showing? I suspect the righthand column is FT4. But is the left column TSH or FT3?

[Disey in reply to FancyPants54]

Sorry forgot to title the columns 🤦‍♀️ left column tsh, right column Ft4, I’ve never had ft3 tested until yesterday but no results yet

[FancyPants54 in reply to Disey]

Thanks. This will help people to help you.

Your TSH has wandered close to top of range and through it once, but that's not enough for a GP to recognise a problem. Doesn't mean there isn't one though. Your FT4 is very low.

When you have future tests, always insist on a blood draw first thing in the morning. Our TSH is highest then. We want our TSH high to a) get a diagnosis or b) get a dose increase when medicated. Testing in the afternoon is pointless as TSH will be low then. I wonder how many of your previous tests have been drawn too late in the day.

You might be able to improve things for yourself by optimising the co-factors your thyroid needs to work well. That means top of range vitamin D3 (+K2), magnesium, vitamin B12 and ferritin (part of the iron panel). If you could get these tested and come back with results members can help guide you to improving the status of such and therefore maximising the change of helping your own thyroid to improve.

How do you feel?

[Disey in reply to FancyPants54]

Yesterdays test which I haven’t had results from was early morning, no levo for 24 hours and only water from waking. I will note down and send b12 and ferritin results over the yesrs too

[FancyPants54 in reply to Disey]

Ah, I didn't realise you were on medication for it. My mistake. You are looking rather under medicated to me.

[SlowDragon Administrator]

Yes pretty likely

Just testing TSH and Ft4 is completely inadequate

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also 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

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

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

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

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/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

[Disey in reply to SlowDragon]

I am awaiting results for ft3 and up to date vit d however these are all vit d results since 2017

Vit d

[SlowDragon Administrator in reply to Disey]

All too low

How much vitamin D are you taking

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 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 with Hashimoto’s, 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, very likely you will need on going maintenance dose to keep it there.

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

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, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease

newscientist.com/article/23...

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...

Interesting article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Have you had folate, B12 and ferritin levels tested?

Or BOTH TPO and TG antibodies

[Disey in reply to SlowDragon]

These are results for ferritin

Ferritin

[SlowDragon Administrator in reply to Disey]

How old are you

Post menopause higher ferritin levels are normal

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[Disey in reply to SlowDragon]

I’m 59

[SlowDragon Administrator in reply to Disey]

So highish ferritin is normal

[Disey in reply to SlowDragon]

these are results for b12

B12

[SlowDragon Administrator in reply to Disey]

Any folate result?

[Disey in reply to SlowDragon]

folate

Folate

[SlowDragon Administrator in reply to Disey]

so both folate and B12 could do with improving

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex 

Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.

If Vegetarian or vegan likely to need ongoing separate B12 few times a week

Highly effective B12 drops

natureprovides.com/products...

Or

B12 sublingual lozenges

uk.iherb.com/pr/jarrow-form...

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

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)

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

Difference between folate and folic acid

healthline.com/nutrition/fo...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)

Thorne currently difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay

Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose

Post discussing different B complex

healthunlocked.com/thyroidu...

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...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500

Post discussing how biotin can affect test results

healthunlocked.com/thyroidu...

helvella.blogspot.com/p/hel...

[Disey in reply to SlowDragon]

Do you think a b12 injection would benefit me?

[SlowDragon Administrator in reply to Disey]

Very unlikely

[Disey in reply to SlowDragon]

hi, I’ve received latest test results today..

Serum free thiodothyronine (3.1-6.8) 4.5

TSH (0.27-4.2) 2.12

FT4 (12-22) 13.1

Vitamin d 44.9

[SlowDragon Administrator in reply to Disey]

How much levothyroxine are you currently taking

Which brand

Was test as recommended, early morning, last dose levothyroxine 24 hours before test

Can you confirm your vitamin D is 44.9nmol?

How much vitamin D are you taking

[SlowDragon Administrator in reply to Disey]

FT4: 13.1 pmol/l (Range 12 - 22)

Ft4 only 11.00% through range

FT3: 4.5 pmol/l (Range 3.1 - 6.8)

Ft3 slightly better at 37.84% through range

Most people when adequately treated will have Ft4 (levothyroxine) on just levothyroxine at least over 70% through range

So clearly you need 25mcg dose increase in Levo

Retest again in 8-10 weeks

Meanwhile working on maintaining OPTIMAL vitamin levels

[SlowDragon Administrator]

There’s no thyroid info on your profile page

I think we all assumed you were trying to get diagnosed with these results

Not already on Levo

On Levo TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

What date did you start on Levo?

[Disey in reply to SlowDragon]

I didn’t realise there was such a thing as putting thyroxine on profile, I joined the site ages ago. I’ve been levo for years, been given it, had it taken away, given back and also t3 but got it taken away, it’s been a rollercoaster with docs and endos, one says this, one says that and that’s why I reached out to you as I’ve been feeling so so bad. I think personally my whole body has gone into low mode, I’ve been under incredible stress from agoraphobia some years back, which led to me not being able to even be on my own indoors, that’s improved but still don’t leave the house alone, had extra stress these last couple of years and I think finally my body is completely worn out, I feel nauseous, headache constantly, aches and pains etc and they say I’ve got fibromyalgia 🤷‍♀️ I’ve not a jot of energy at mo, no desire to do anything at all.

I have asked gp to increase to 75 after my tests results suggest I need it. I’ve got vit d, vitamin b12 and b complex ready to start.

That test was how you said, early with no levo for 24 hrs and only water from waking to having the test, I’m going to just be kind to myself, take the supplements, eat well and hope for the best 🤞 thank you for all your help, I really do appreciate it, it’s good to know that someone knows what they’re talking about cos the docs sure don’t, I’ve relied on them for too long and it’s got me nowhere, however, talking with you and your team has enlightened me on how this all works

[SlowDragon Administrator in reply to Disey]

Fibromyalgia is just a fancy word for inadequately treated hypothyroidism

Few links about fibromyalgia 






stopthethyroidmadness.com/f...


chriskresser.com/low-t3-syn...





holtorfmed.com/download/chr...

healthrising.org/blog/2019/...

Work out which brand of levothyroxine suits you best, then always get that brand

Retest thyroid levels 8-10 weeks after being on 100mcg levothyroxine

[Disey in reply to SlowDragon]

I’ve always felt like it was to fob me off to say I’d got fibro. I’ve just noticed that although I’d increased to 50 from 25 my tsh has gone down but so has my ft4, shouldn’t that have risen with an increase?

[SlowDragon Administrator in reply to Disey]

You’re only on 50mcg Levo?

TSH is totally unreliable once on replacement thyroid hormones. The most important results are ALWAYS Ft3 followed by Ft4

When adequately treated likely to have Ft3 at least 70% through range

If on just Levothyroxine, Ft4 likely a bit higher at 80%

[SlowDragon Administrator]

guidelines on dose levothyroxine by weight

Even if we frequently start on only 50mcg, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine:

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

You mentioned….at one point you were on T3 as well

Typically Levo dose is reduced by 25mcg a week before adding SMALL dose T3

Initially 5mcg …..slowly increasing to 3 x 5mcg per day

Retest in 8-10 weeks

Invariably TSH will then be extremely low or suppressed

[Disey in reply to SlowDragon]

I got t3 off my doctor many years ago, prob bout 15 years, he referred me to endo who took it away before I even had chance to see if it worked. My docs now won’t prescribe t3 so I’ll just ask for increase in t4

[Disey]

yes I’m currently on 50 so going to ask for 75

[SlowDragon Administrator in reply to Disey]

50mcg is only standard STARTER dose

No wonder your Ft4 results are too low

Which brand is 50mcg

Ideally don’t change brand as you increase dose

[Disey in reply to SlowDragon]

The brand I’m on is called teva

[SlowDragon Administrator in reply to Disey]

Have you always been on Teva

Teva is lactose free

Are you on dairy free or lactose free diet?

Many people find Levothyroxine brands are not interchangeable.

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

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

Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz

Accord only make 50mcg and 100mcg tablets. Accord is also boxed as Almus via Boots, 

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

Lactose free brands - currently Teva or Vencamil only

Teva makes 25mcg, 50mcg, 75mcg and 100mcg

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

Teva is lactose free.But Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome 

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)

Aristo (currently 100mcg only) is lactose free and mannitol free.

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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.

Government guidelines for GP in support of patients 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.

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).

And here

pharmacymagazine.co.uk/clin...

Discussed here too

healthunlocked.com/thyroidu...