Need advice on dosage of thyroid : My wife has... - Thyroid UK

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Need advice on dosage of thyroid

Decaston profile image
11 Replies

My wife has hypothyroidism she is 70 years, have learnt the hard way that getting the correct dosage right is counterintuitive. We live in Somerset, she pays private for Earfa, her current dosage is 30 mg or half 60 mg pill. Just got the results TSH = 2.57. T3 = 4.0. T4 =8.1

Both the T3 ( 3.8 to 6) and T4 (7.9 to 14.4) are just in the so called Normal range, while The TSH at 2.57 is well within the TSH range (of 0.38 to 5.33).

We want to increase the T3 and T4 which are borderline acceptable and have scope to either increase or reduce the TSH level.

If l advice my wife ( Nina) to reduce her dose to 25 mg would that work?

My wife also has just been told she has a low sodium level of 131mml in the latest blood 🩸 test so we have to sort that as well.

My name’s Stephen we appreciate any help or advice. We are not newbies to hypothyroidism but realise the hard way you have to sort it yourself to a large degree.

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Decaston
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11 Replies
pennyannie profile image
pennyannie

Hello Stephen and welcome to the forum :

Once on any form of thyroid hormone replacement one needs to dose/monitor on the Free T3 and Free T4 ;

When taking Natural Desiccated Thyroid - of which Efra is a brand - we usually treat to the relief of symptoms and not to necessarily fit into the ranges which were introduced by Big Pharma to dose and monitor their own T3 and T4 thyroid hormone medications - though it probably makes a bit of sense to keep these ranges in mind :

What symptoms is Nina dealing with and how long has she be taking Efra at this dose ?

What was Nina diagnosed with and has Nina previously tried other treatment options -

such as T4 - Levothyroxine and T3 Liothyronine ?

We generally track NDT on the active hormone - Free T3 - and currently her result is just 11% through the range so if anything I would think she needs a dose increase in Efra.

I increase my NDT by 1/4 grain increments each week and there comes a week where I feel I've gone a bit backwards and so I drop back down to the previous weeks dose - stay on that 6-8 weeks - letting it settle in the body and then run a blood test to see that my T3 has moved from my bench mark reading.

i also monitored my blood pressure, pulse and temperature twice a daily while building up my dose and whilst these first 2 remained constant I tracked my temperature rise from 35.4 to 36 .6 where it tends to hoover today some 4/5 years later to when I started self medicating with NDT.

By increasing her dose the TSH will go down - but that is OK;

No thyroid hormone replacement works well until core strength vitamins and minerals - ferritin, folate, B12 and vitamin D are up and maintained at optimal :

I now aim for a ferritin of around 100 : folate around 20 : active B12 75++ ( serum B12 500++ ) and vitamin D at around 100.

Decaston profile image
Decaston in reply to pennyannie

thanks for your quick reply, Nina started on synthetic levothyroxine for hypothyroidism and after a few years was advised to try desiccated thyroid by a consultant ( Nuffield), she never tried the T3 lyothyronine ( l thought you could not get it anymore?) . I have to admit that one of the reasons l said dosage was counterintuitive was because l advised her to increase her dosage to 60mg of earfa desiccated thyroid and her TSH went to 0.44 and her blood pressure dropped and she was unwell 🤒. Nina does take vitamin supplements, do you get these measured by your doctors surgery?

pennyannie profile image
pennyannie in reply to Decaston

No, I'm afraid I have to run my own private blood tests for everything :

If you go into Thyroid UK - who are the charity who support this patient to patient forum there is page full of private companies who can run the necessary tests ad then forum members simply post the results and ranges and advised on their next steps forward, to better health.

There are companies offering just finger prick home blood testing kits and at the other end of the spectrum you have the likes of Medichecks and Blu Horizon who between them I think, cover the whole of the country and can offer a nurse home visit if you require a venous blood draw.

i now only run a yearly full thyroid function test, to include the vitamins and minerals, and that is around 10/11 blood analysis but a venous blood draw as I daily supplement some vitamins and minerals.

With NDT you should dose adjust by just 1/4 grains - and give the medication time to settle in the body - some people increase fortnightly -

The TSH will go down as the dose of any thyroid hormone replacement is increased - and we know that any medication containing T3 will tend to lower T4 and the TSH -

but I think staying on too low dose too long is just as debilitating :

Is Nina on any other medication - not that I know much about knock on effects :

Now reading of the link between low sodium and hypothyroidism have you asked your doctor about the low sodium ?

thyroiduk.org

Decaston profile image
Decaston in reply to pennyannie

it seems that if Nina ingests more salt and reduces water intake sodium levels will rise

pennyannie profile image
pennyannie in reply to Decaston

Yes - I read that too - but Steve, you shouldn't be on your own with all this responsibility, you also need peace of mind - and why I've suggested getting the appropriate medical help.

Whilst i understand you care and are concerned - you are not best placed to treat your wife's ill health.

Decaston profile image
Decaston in reply to pennyannie

l agree 😊 don’t fret

pennyannie profile image
pennyannie

Hey there -

It would seem from reading around on the internet that low thyroid can cause low sodium levels - Hyponatremia.

Decaston profile image
Decaston in reply to pennyannie

yes Nina has 131 mol, and anything below 135 is Hyponatremia, l believe, and there is a link to TSH level, but not sure 🤔 how it’s treated

pennyannie profile image
pennyannie in reply to Decaston

Well, yes - it looks like it could be a knock on issue from having low hormones, and being undermedicated for hypothyroidism which i believe is the case.

Some of symptoms read very similar to hypothyroidism as well.

A slowed metabolism, a hypothyroid symptom, causes so many knock on issues - another which is the inability of the body to break down and extract key nutrients through food, no matter how well and clean you eat, and why I wrote about testing key vitamins and minerals.

I think I read about rebalancing electrolytes - I guess it depends on the level / range but I think your doctor should be advising you on this anyway.

pennyannie profile image
pennyannie

pubmed.ncbi.nlm.nih.gov/283...

Just found the above and underneath this link there are several other publications that maybe of interest to you.

Considering your wife's low thyroid hormone levels I think her hypothyroidism also needs sorting and maybe the consultant at the Nuffield who suggested she take NDT might be the best person to advise on how to treat with NDT as most NHS doctors have little idea and likely not even know of this treatment option. as it is not taught in medical school nor readily prescribed on the NHS.

I was refused both T3 and NDT through the NHS when I became seriously unwell some years after having had RAI thyroid ablation for Graves Disease in 2005 - because I was dosed and monitored on a TSH and not my T3 and T4 readings.

Decaston profile image
Decaston

thanks for your help penny Annie, l will keep you updated.all best Steve

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