Daughter's private bloods from Blue Horizon - Thyroid UK

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Daughter's private bloods from Blue Horizon

JulieLou66 profile image
17 Replies

Hello, I am here on behalf of my 31 year old daughter, I am very worried about her health. I am concerned about her mental symptoms too, I have made a list of them. She was diagnosed hypothyroid in 2013.

Mental symptoms

Short term memory loss

Inability to retain new information

Forgetfulness

Misplacing items

Confusion

Problems with sleep

Problems speaking

Anxiety

Paranoia

Irritability

Physical symptoms

She looks ill

She looks depressed

She looks pale, almost white

Yellow tinges to her skin

Tiredness

Slow movements

Goitre

Considerable weight gain - she went from 56.1KG to 56.9KG within a day and no change in her eating pattern.

Please, if anyone could help, I would appreciate it. Thank you

May 2018

TOTAL THYROXINE 71 nmol/L (53 - 154)

* THYROID STIMULATING HORMONE 4.21 mIU/L (0. 2 - 4.2)

FREE THYROXINE 17.2 pmol/L (12 - 22)

FREE T3 4.2 pmol/L (3.1 - 6.8)

* THYROGLOBULIN ANTIBODY 704 IU/mL (0 - 115 negative)

* THYROID PEROXIDASE ANTIBODY 610 IU/mL (0 - 34)

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JulieLou66 profile image
JulieLou66
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17 Replies
greygoose profile image
greygoose

Well, she has Hashi's and she's under-medicated. TSH should be 1 or under when on thyroid hormone replacement.

How much does she know about Hashi's?

How much levo is she taking?

That weight gain was water weight, nothing to do with her diet. :)

JulieLou66 profile image
JulieLou66 in reply togreygoose

Thank you. She takes 100mcg Levothyroxine from 150mcg back in December 2017.

greygoose profile image
greygoose in reply toJulieLou66

Typical! I imagine she had a Hashi's 'hyper' swing in December, and her clueless doctor reduced her levo because of high Frees and low TSH?

Well, 100 mcg is obviously not enough, is it. She needs an increase.

JulieLou66 profile image
JulieLou66 in reply togreygoose

Her TSH was below range but her FT4 and FT3 were normal.

TSH 0.03 (0.2 - 4.2)

FT4 21.2 (12 - 22)

FT3 4.1 (3.1 - 6.8)

Thanks again

greygoose profile image
greygoose in reply toJulieLou66

OK, so he was dosing by the TSH. That is to be firmly, but politely, discouraged. It's the best way to keep the patient sick! Her TSH may have been low, but her FT3 was also low, and that's the most important number.

Besides, he decreased by too much in one go. Decreases should be done exactly the same as increases - i.e. 25 mcg every six weeks.

How did she feel on 150 mcg? Did she feel well? If so, then she should insist that her dose is put back up to 150 mcg.

JulieLou66 profile image
JulieLou66 in reply togreygoose

Thank you, she felt no better at all.

greygoose profile image
greygoose in reply toJulieLou66

OK, well, there's a reason for that. She doesn't convert T4 to T3 very well. So, what she needs is some T3 added to her T4. Would her doctor be agreeable to that?

JulieLou66 profile image
JulieLou66 in reply togreygoose

Her GP says she would benefit from it but her endocrinologist...he's very anti T3

greygoose profile image
greygoose in reply toJulieLou66

OK, so if she bought her own T3, would her GP agree to monitor her? Then she could drop the useless endo, because he obviously doesn't know much about thyroid.

JulieLou66 profile image
JulieLou66 in reply togreygoose

I'm not entirely sure. She told me the GP agreed with the use of T3 in her treatment and I can only hope the GP will agree to monitor her. Her GP's view on T3 wasn't exactly clear.

greygoose profile image
greygoose in reply toJulieLou66

Then it would be a good idea to ask him, because that's what she needs. What she doesn't need is an endo that doses by the TSH!

Have she had her vit D, vit B12, folate and ferritin tested?

JulieLou66 profile image
JulieLou66 in reply togreygoose

Yes I will post what she has had done now for vitamins.

greygoose profile image
greygoose in reply toJulieLou66

OK :)

SlowDragon profile image
SlowDragonAdministrator

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 primary hypothyroidism in Uk is due to Hashimoto's

She is currently very under medicated. She needs immediate 25mcg dose increase and bloods retested in 6-8 weeks

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Essential to test vitamin D, folate, ferritin and B12. Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

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)

Many, many people on here with Hashimoto's find strictly gluten free diet essential

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

Ideally ask GP for coeliac blood test first, plus vitamins tested if not been done

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

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

thyroidpharmacist.com/artic...

Taking high enough dose of Levothyroxine to bring TSH down under one, FT4 towards top of range and FT3 should then be at least half way in range.

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)."

Getting vitamins optimal and trying strictly gluten free diet will help improve conversion of FT4 to FT3

Selenium supplements can help improve conversion too

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 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. Unless she is lactose intolerant best to avoid Teva brand of Levothyroxine, it upsets many patients

After dose is increased, vitamins optimal and gluten free, if FT3 remains low then, like many with Hashimoto's she may need addition of small dose of T3.

Email Thyroid UK for list of recommended thyroid specialists, some are T3 friendly

please email Dionne at

tukadmin@thyroiduk.org

Outrageous price charged by pharmaceutical companies to NHS for T3 is causing inappropriate restrictions on NHS prescribing of T3. Private prescription enables access to cheap EU T3

JulieLou66 profile image
JulieLou66 in reply toSlowDragon

I will post what she has had done for vitamins. Thanks

Slowfarmer profile image
Slowfarmer

Lyme disease?

Courtlea profile image
Courtlea

You can take natural thyroid hormones

That contain both t4 and t3

I know there are certain doctors who will prescribe that

Levo is synthetic and only contains t4

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