Finally sorting this thyroid nightmare - Thyroid UK

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Finally sorting this thyroid nightmare

bluekitchen profile image
11 Replies

Its all starting to make sense now, I had thought i was a hypochondriac!

At the age of 17 I was diagnosed with rheumatoid arthritis and 20 years of spells of odd debilitating illnesses, with only 2 diagnosis of thyroid problems one hyper and one hypo. (the arthritis never materialised despite him telling me I would end up in a wheel chair)

The second diagnosis (hypo) was only 6 weeks ago and I have just sent for my own set of blood tests. They show deficient and low level vitamins, which I can now rectify.

What I don't understand is how to improve my free T4

results are

TSH 0.84

FreeT3 4.43

Free Thyrozine 11.50

I am on 50mg Levo

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bluekitchen profile image
bluekitchen
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11 Replies
greygoose profile image
greygoose

Levo is T4. So, the more you take, the higher your FT4 goes. Your doctor should retest you after six weeks and increase your dose by 25 mcg. :)

SlowDragon profile image
SlowDragonAdministrator

Your low Ft4 shows you are under medicated on just 50mcg levothyroxine

That’s hardly surprising as it’s only a starter dose

But (probably because of low vitamin levels) your TSH is currently low as well

You may struggle to get GP to agree to next dose increase in levothyroxine

Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?

This gives highest TSH result

What are your vitamin results and ranges

The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is under 2

When adequately treated, TSH will often be well under one.

Most important results are ALWAYS Ft3 followed by Ft4.

When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)

Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Presumably you have also had thyroid antibodies tested?

bluekitchen profile image
bluekitchen in reply toSlowDragon

Thanks for your responses.These are my full set of results:

SlowDragon profile image
SlowDragonAdministrator in reply tobluekitchen

So your antibodies are not raised

But that doesn’t exclude hashimoto’s

Ask for ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

Vitamin D, folate and B12 all too low

Clearly you need 25mcg dose increase in levothyroxine too. Ft4 is below range.

See GP and request dose increase in levothyroxine

SlowDragon profile image
SlowDragonAdministrator in reply tobluekitchen

Vitamin D needs improving to at least 80nmol and around 100nmol maybe better

Are you currently taking any vitamin D

GP should prescribe 1600iu everyday for 6 months

NHS Guidelines on dose vitamin D required

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

Vitamin D

GP will often only prescribe to bring 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...

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

Test twice yearly via 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

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

It’s trial and error what dose we need,

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

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

Taking too much vitamin D is not a good idea

chriskresser.com/vitamin-d-...

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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

2 good videos on magnesium

healthunlocked.com/thyroidu...

Vitamin D and Covid

vitamind4all.org/letter.pdf

SlowDragon profile image
SlowDragonAdministrator in reply tobluekitchen

Low B12 and low folate

supplementing 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 improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

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 B12 result below 500, 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...

healthline.com/nutrition/me...

Only add one supplement at a time and then wait at least 10 days to assess any changes before adding another

SlowDragon profile image
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after EACH dose increase

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

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 thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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/

Vitamin D NHS postal kit

vitamindtest.org.uk

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, 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

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Which brand of levothyroxine are you currently taking?

Just to add to all the wise advice above, I can’t see the ranges for your tests but a combination of low TSH and low T4 is not typical. If T4 is under range your TSH would normally be high in typical hypothyroidism. Sometimes problems with the pituitary gland lead to a combination of low TSH and low T4. Perhaps you could follow up with your doctor to get a good explanation and if necessary further investigation. Good luck.

Hi, you are right that the T3 looks ok (especially compared to T4) but it's just odd for T3 to be in range but TSH and T4 to be below range unless you are taking T3 or there is something else going on. Could be a faulty test result. , I've only ever had results like that when I'm taking T3. Maybe an expert on here can help out?

Bearo profile image
Bearo

I’ve been reading up on Central hypothyroidism as my blood results are very similar to OP. Regarding T3 being normal I found this:(skip to the last sentence)

“The hallmark of CH are low serum levels of circulating free thyroxine (FT4) into the hypothyroid range associated with low/normal serum TSH concentrations. Some patients with CH with a predominantly hypothalamic defect may have high serum TSH levels, a potentially misleading diagnosis which may be confused with subclinical primary hypothyroidism. Although serum TSH levels may be normal or high, the TSH is biologically inactive and cannot stimulate the thyroidal TSH receptor. The measurement of serum free triiodothyronine (FT3) levels is highly unreliable, as more than 30% of patients with CH have normal levels of this hormone.”

endocrinologyadvisor.com/ho...

Bearo profile image
Bearo

endocrinologyadvisor.com/ho...

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