Advice on recent test results: Hi All, My mother... - Thyroid UK

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Advice on recent test results

Wired123 profile image
13 Replies

Hi All,

My mother's recent test results and some historical ones for reference.

She has not been feeling great and her Jan bloods show why. Increasing to 100mcg has dropped her TSH but not increased her T4 by as much as I would have liked.

She's still not feeling great so I am considering asking GP to up her thyroxine, but am also conscious that her TSH is already below 1 and any further thyroxine will drop her TSH too low. Any thoughts? Should she be trying to get her T4 levels into the upper quarter?

I note she had a trial of T3 many year ago, although had to stop due to side effects because the idiot Endo started her on 20mcg which is too high a dose! My own Endo started me on 5mcg - I'm taller and much heavier than my mother. Her recent results don't show any conversion issue but would there be grounds for a second trial starting at 5mcg and working up slowly given her age now of 65.

She has been referred to NHS Endo (from the Thyroid UK list) who may prescribe T3 - still waiting for a date for this appointment.

Her symptoms include fatigue and lethargy, struggles to wake up, needs a lot of sleep and has no motivation or energy to do anything. She doesn't work but can barely so basics like showering, cleaning and cooking. Really do need to get to the bottom of her issues.

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Wired123
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SlowDragon profile image
SlowDragonAdministrator

On levothyroxine dose should be high enough for Ft4 to be in top third of range. Typically at least 60-70% through range

Results show she was very under medicated

Jan 2021

Ft4 25% through range

Dose increased to 100mcg

Ft4 still only 51% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

Suggests room for further increase in levothyroxine

Perhaps 125mcg 3 days week retest in 6-8 weeks

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

What vitamin supplements is she currently taking

Does she have Hashimoto’s.

Is she on strictly gluten free diet

Suggest you get vitamin levels tested as next step

Plus coeliac blood test if not already strictly gluten free

Wired123 profile image
Wired123 in reply toSlowDragon

Yes to Hashimoto’s.

She’s getting B12 injections so it’s middle of the range and is also on Vit D supps so that should be ok.

Will try perhaps 125mcg at weekends and see how that goes for a few weeks and then increase to a third day.

Would you recommend spacing it out throughout the week or take on consecutive days?

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

Personally I would space it out. But in theory it shouldn’t matter

How much vitamin D is she taking

Vitamin D should be tested twice year when supplementing

Is she also taking vitamin K2 and magnesium

As she has 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 improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

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

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...

Has she had coeliac blood test done?

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

Wired123 profile image
Wired123 in reply toSlowDragon

Thanks will try the online kits as GP always goes to war over simple blood test requests!

What do you think Re the T3 conversion issue.

Right now the bloods aren’t showing any issue on conversion, will these become more apparent once her T4 rises?

She has had a trial on the NHS in 2009 so clearly an Endo felt it was warranted but right now I can’t see it in the ratio of T3 to T4.

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

If she was only on 75mcg levothyroxine in 2009 .....likely simply on too low a dose

But conversion issues sometimes only appear once levothyroxine dose is high enough

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

guidelines on dose levothyroxine by weight

Even if we frequently 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...

Wired123 profile image
Wired123 in reply toSlowDragon

Thanks, let’s try the increase in T4 then we can see Re conversion.

T3 has changed my life so I’m assuming, given genetics and hypothyroidism running throughout my mums family, it’s likely T3 will also help her... and perhaps her siblings who also are hypo.

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

Yes, I agree T3 changed my life, but couldn’t tolerate it at all until all four vitamins optimal and on strictly gluten free diet

Have you had Dio2 gene test?

Wired123 profile image
Wired123 in reply toSlowDragon

I’ve had the test and was surprisingly negative

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

So your Mum may be negative too

Wired123 profile image
Wired123 in reply toSlowDragon

Yep but my doctor still felt I should try T3 regardless and it’s been fantastic.

I figure the fact that we don’t have a thyroid gland anymore due to Hashimoto’s means the body is limited to how much T4 it can convert. After all most of the conversion is done in the thyroid gland itself and if you don’t have one I can’t see how the body can keep up on the conversion.

SlowDragon profile image
SlowDragonAdministrator in reply toWired123

20% of conversion happens in the gut ....so if gut is affect poor conversion is almost inevitable

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