Antibodies: Hi I’m quite worried about my 27 year... - Thyroid UK

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Tinacros profile image
17 Replies

Hi I’m quite worried about my 27 year old daughter. About 11 years ago she had antibodies tested that came back positive but her GP at the time told her she had to wait to “crash and burn” before she could get help. Over the years she has periods where she is so low it upsets me, and her partner. She has had thyroid tests in the past but and her tsh is in the high 3’s. I made her ring GP and have telephone consultation and she’s having bloods this Wednesday, but not till 1pm. Believe it or not she is a mental health nurse and pushes all the boundaries for her patients but not when it comes to looking after herself. Would I be right in thinking it’s hashimotos and should she be getting treated. It’s hard for me to intervene because of her age x

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Tinacros
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SeasideSusie profile image
SeasideSusieRemembering

Tinacros

Postive TPO/Tg antibodies will confirm Hashi's and if she gets an over range TSH (but not necessarily as high as 10) at the same time as a positive antibody result, an enlightened doctor should start her on Levo.

However, a 1pm blood draw will do her no favours. She needs the highest possible TSH for a diagnosis, at least over range, and because TSH is highest early morning and lowers throughout the day, then she really needs the test no later than 9am. And because eating can lower TSH and coffee (presumably also other caffeine containing drinks) can affect TSH, then the test should be done fasting and drinking water only. I would encourage her to rearrange the appointment.

The first graph in this post shows the different levels of TSH throughout the day. 1pm is about as low as it goes so definitely avoid this time, you will see 9am is the best time:

healthunlocked.com/thyroidu...

Tinacros profile image
Tinacros in reply toSeasideSusie

Thankyou so much. I’ve just texted her and she will change it. It’s hard talking to her at the moment as she’s so low and defensive. X

SeasideSusie profile image
SeasideSusieRemembering in reply toTinacros

Tinacros

Is she getting antibodies retested? Just thinking that even though she's had positive antibodies in the past, her GP may not join the dots and tell her that unless her TSH is 10+ she can't be treated.

Tinacros profile image
Tinacros in reply toSeasideSusie

I’m not sure. My younger daughter jade type 1 diabetes and last time I was there I mentioned to him and he said she should be getting treated I’m going to tell her to ask to be referred to endo. She also has coeliac (diagnosed at 11). Both my kids have got autoimmune issues x

shaws profile image
shawsAdministrator

I'm sorry your daughter is struggling but take the advice given by SeasideSusie in order to get the best results from a blood test. GPs seem to only look at a TSH result and they seem to be very ignorant of any clinical symptoms the patient has as we used to get diagnosed by clinical symptoms alone. TSH is highest early a.m. but drops throughout the day.

SlowDragon profile image
SlowDragonAdministrator

For full Thyroid evaluation she needs 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 with Hashimoto’s

She should have been tested annually once high antibodies confirmed

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

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 ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, if order on Thursdays

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/signs-symptom...

Tinacros profile image
Tinacros in reply toSlowDragon

She used to have B12 injections but they stopped them and said her folate is low and just take folic acid tablets x

SlowDragon profile image
SlowDragonAdministrator in reply toTinacros

New policy is to say patients need to self supplement with sublingual B12 lozenges daily. This might be enough alongside daily vitamin B complex

But if B12 is low due to PA, lozenges wouldn't be adequate. Would have to have injections

Is she vegitarian or vegan

Tinacros profile image
Tinacros in reply toSlowDragon

No she’s not. Just coeliac x

SlowDragon profile image
SlowDragonAdministrator in reply toTinacros

Anyone whose coeliac is highly likely low in vitamin D and magnesium

She presumably has all vitamins tested annually by GP. If not, she should do

Gluten free diet is extremely low in magnesium

Vitamin D highly likely low

Jarrow B12 lozenges widely available online

Suggest she tests FIRST as not been supplementing to see EXACTLY how low her levels are

Hashimoto’s is much more likely when coeliac too

Tinacros profile image
Tinacros in reply toSlowDragon

Where do you get b12 lozenges?

SlowDragon profile image
SlowDragonAdministrator in reply toTinacros

Once she has been tested ...likely to need daily vitamin B complex Indefinitely

And if B12 is very low...B12 sublingual lozenges as well as vitamin B complex ...for few months

Might need 2-4 per day initially....can then slowly decrease. May manage on just vitamin B complex eventually

Low B12 symptoms

b12deficiency.info/signs-an...

Low vitamin D and low B vitamins may be linked as explained here

drgominak.com/sleep/vitamin...

In YouTube video when Dr Gominak talks about vitamin D levels ...vitamin D at 40ng/ml (USA units) is equal to 100nmol (UK units)

youtu.be/74F22bjBmqE

Mamapea1 profile image
Mamapea1

I can sympathise...I've had a similar problem with my youngest daughter [22] for the last four years. She was open to suggestions 4 years ago, and went straight to the GP for tests. Unfortunately, the Dr said it was exam stress [which she didn't have] and gave her antidepressants, despite the fact she had a noticeable goitre. I carried on encouraging her, but after she saw another 3 GPs in different parts of the country, and they ALL diagnosed depression, anxiety and rheumatism [?] she came to the conclusion I was thyroid obsessed, and all these Drs couldn't be wrong😕

None of them gave her any thyroid or vitamin tests at all, despite knowing the family history of thyroid issues. Fortunately, her sisters persuaded her to do a comprehensive Medichecks at home, which revealed Hashimotos and dire vitamin levels, even though she'd been supplementing as advised on here, for 2 years. I myself gave up with NHS tests/GPs long ago...they usually only test TSH and it doesn't tell you anything. Perhaps someone could persuade her to do a test. If not, it will only get worse...we read terrible stories on here where people have deteriorated over time through lack of simple treatment...it's appalling.

Tinacros profile image
Tinacros in reply toMamapea1

Yes If we get no joy I will buy the medichecks myself x

Mamapea1 profile image
Mamapea1 in reply toTinacros

Yes, good idea, then you'll have given them a chance. I would do the Medichecks thyroid ultra vit, as it has an active B12 test in it. I see it's gone up recently, but check for Thursday offers...they come up quite often. Folate and B12 work together, so if folate is low, her B12 won't be used/absorbed properly. I'm appalled to see she's had her B12 injections stopped. I never even got as far as getting offered them, despite severe folate/B12 deficiency...I take Jarrows sublingual 5,000mcg most days and use Better You B12 spray, which halted my horrible neurological symptoms. I thought I'd got Parkinson's or MS!

It took a while though, especially to get the all the other B vits in line. After 2 years on a B complex, I found I was still deficient in B1 and B5 as there hadn't been enough of them in the complex for me...although we're all different. I followed the Dr Gominack protocol as I had awful sleep issues, and I found some useful info re B1 on hormonesmatter.com, and I was fixed!

Previously, I had an undiagnosed vit D deficiency, with a level of 4, despite being a sun worshipper, I was too ill to get out much. GP had refused to test, but one of my daughters came with me and 'insisted'...then they panicked when they saw all the results. Even then, no one told me you needed magnesium and K2 when taking D, so that caused further problems for a while. The whole thing went on for decades, with thyroid and vitamins...I had terrible absorption issues, and just got worse. Thank goodness I found this forum and now self treat and do my own testing...I honestly don't think I'd be here otherwise.

I hope you get some answers for your daughter and she will soon be back to good health...it really is a terrible worry when GPs behave like pharmaceutical reps and don't seem to recognise obvious deficiency symptoms. Good luck 🍀 x

Tinacros profile image
Tinacros in reply toMamapea1

Thankyou x

Tinacros profile image
Tinacros

No they never test her for anything 🤷🏽‍♀️

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