Girlfriend's results including TPO elevated at ... - Thyroid UK

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Girlfriend's results including TPO elevated at 773.4 (<34)

Jai7 profile image
Jai7
7 Replies

TSH 9.31 (0.2 - 4.2)

Free T4 13.7 (12 - 22)

Free T3 3.2 (3.1 - 6.8)

TPO antibody 773.4 (<34)

GP comments - ??? thyroid disease ???

Endo has said he wants to wait until girlfriend gains weight before increasing her levothyroxine dose of 50mcg.

Thoughts welcome.

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Jai7
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SlowDragon profile image
SlowDragonAdministrator

She is very under medicated. Has she been on higher dose and/or T3 (Liothyronine)

Presumably she's thin. If so then it seems even harder to get correct treatment.

Medics tend to think we must be fat to be hypo. Many hypos are very thin and struggle to gain weight

Her antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's

With Hashimoto's, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins.

Low vitamin levels stop thyroid hormones working.

Essential to test vitamin D, folate, ferritin and B12. Very likely to be too low. Always get actual results and ranges.

Post results when you have them, members can advise

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

You could ask for testing for coeliac, to get them thinking about reason for low vitamins

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

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once find a brand that suits, best to make sure to only get that one at each prescription.

All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

Jai7 profile image
Jai7 in reply to SlowDragon

Thanks yes, she has been on 200mcg Levothyroxine and 20mcg T3, she felt best on this. She is thin, she's gained a bit of weight but still petite.

SlowDragon profile image
SlowDragonAdministrator in reply to Jai7

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

See if you can get full thyroid and vitamin testing from GP.

Private tests are available

thyroiduk.org.uk/tuk/testin...

Link about antibodies

thyroiduk.org.uk/tuk/about_...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Print this list of symptoms off, tick all that apply and take to GP

thyroiduk.org/tuk/about_the...

You need a new endo. (One that isn't a sadist)

Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org

Or like many may have to self medicate. But with all the national news around T3 we may finally get more recognition of need and serious price reduction

humanbean profile image
humanbean in reply to Jai7

Why has your girlfriend's dose been reduced from 200mcg Levo and 10mcg T3 down to 50mcg levo? What excuse was given for such a drastic, sadistic and massive dose reduction?

I am guessing that her TSH was under the range, she was told she would have a heart attack and develop osteoporosis, and she had to cut her dose dramatically to save her life! But this is nonsense. The dangers of being a little bit overdosed have been massively over-hyped, and doctors have just scared themselves stupid. And I will only believe your girlfriend was massively overdosed if I saw the test results and checked for myself!

What I've just described is common behaviour in endocrinologists.

Any reduction in thyroid meds should be done carefully, not in one massive jump. And the results of dropping dose in massive jumps can be seen in your girlfriend's test results (and no doubt in her symptoms too), with her being severely under-medicated.

humanbean profile image
humanbean

The Endo is a sadist. Your girlfriend is very hypothyroid and needs treatment. A lot of people gain weight on Levothyroxine, but doctors are convinced it is the best weight loss drug ever invented.

I think your girlfriend needs to get a second opinion and she should insist on being treated like any other treated hypothyroid patient with a TSH of nearly 10 - she needs a dose increase of 25mcg and then re-testing in 6 weeks time. Then if her TSH is still too high and her Free T4 and Free T3 are still low or low in range then she needs another increase of 25mcg Levo and more testing 6 weeks after that.

It wouldn't surprise me if she needed a dose anywhere between 100mcg and 150mcg per day, but I would think 125mcg might be a reasonable best guess of how much she needs. But she needs her dose increasing a few times and testing before she'll know.

I hope she starts feeling better soon. And get her nutrients levels tested. Once she has results, post them here and we can tell her what to supplement.

greygoose profile image
greygoose in reply to humanbean

These damned doctors want their cake and eat it! They won't believe you're hypo unless you put on weight, but when you do put on weight, they tell you it's nothing to do with your thyroid! If i were a conspiracy theorist, I'd think it's all a huge plot to avoid diagnosing/treating hypos! Wait a minute... I AM a conspiracy theorist!

SlowDragon profile image
SlowDragonAdministrator

Insist on full testing for coeliac if you can’t get anywhere

She can’t gain weight because gut is so badly affected

But is most likely gluten intolerant

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