Not one professional has been able to explain to me how my daughter can have Hashimoto’s but when tested for antibodies she tested (70) which is near “normal”
I was under the impression that it was the antibodies that attacked the thyroid.
Is there anyone else in the same situation who could explain why this is the case?
Thank you😊
Perhaps she's reduced her antibodies by avoiding gluten, & taking zinc & selenium?
Sorry for the late reply. She is 16 now but when first diagnosed at the age of 13 both types of antibodies were low.
It's possible to have Hashimoto's and never have raised antibodies
It's not the antibodies that are attacking the thyroid as explained here
hashimotoshealing.com/under...
Hashimoto's is confirmed by presence of TPO or TG thyroid antibodies
Many people struggle to get diagnosed here in UK if only TG antibodies are high
Sorry for the late reply and thank you again for this information. I found it very interesting to read.
My daughter seems to be a bit of a rare case as both sets of antibodies are low.
My daughter tested negative for IgA (0.2) and IgG (<0.1). Positive result is >10.
Is it possible to have an auto immune disease testing negative for antibodies in both TPO/Abs AND TPO?
She doesn’t have any of the classic symptoms of Hashimoto apart from lethargy.
Sometimes I wonder if something else caused her thyroid to swell and gave her high TSH rather than an auto immune disease.
I read that Adrenal stress could be a factor.
My daughter developed a goitre when she was 13, 2 months after my Dad passed away. They were extremely close so there may be a connection there?
We have no history of auto immune disease in our family, who knows?
It's not the antibodies that attack the thyroid
What's the range on TPO antibodies test? Usually a result of 70 is over the top of range of 34
If her TPO antibodies were only 38-40 she would still be diagnosed as having Hashimoto's
TG antibodies, top of range is usually 115
Yes stress and thyroid are closely linked
Stress can affect the gut biome and low vitamin levels can affect Thyroid
Incidence of Thyroid disease increases rapidly in war time
Have you had her vitamin D, folate, ferritin and B12 tested?
Has she had ultrasound scan of thyroid? This can diagnose Hashimoto's. Thyroid looks granular and/or nodules
For full Thyroid evaluation you need 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, especially if Thyroid antibodies are raised
Is she on Levothyroxine? If so how much?
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Blue horizon allows testing of a minor, don't think Medichecks do
Best to pay the extra for private blood draw rather than DIY finger prick test
Thank you😊
Just had a look back at her first blood test taken 2 months after being diagnosed in May 2016
Her TSH was 24.4
T4 was 9
This was all they did initially. She was started on 75mg Levothyroxine and She was sent to a growth clinic which I found inadequate so I started to research more.
In June 2016 I asked for antibody test:
They also did a full blood count.
All 5 white blood cells were normal and in range.
“Thyroid Peroxid Ab” 70 iu/ml (60-100)
Will be filed as 43Gd000 serum thyroid peroxidase antibody concentration 70 iu/ml
negative <60,
equivocal 60-100,
positive >100
September 2016 I asked my doctor to test her B12 as I have B12 deficiency too.
TSH was 1.2
B12 was 177
Folate was 3.4
Was given cyanocobalamin (Vit B12) 50mcg one a day
In November 2016 I asked doctor to check B12 and test for vitamin D as I also had a vitamin D deficiency.
TSH was 1.8
B12 was 459
Folate was 9.7
Vit D3 level 47 nmol/L
30-70 borderline insufficiency.
It wasn’t until August 2018 that I asked for my daughter to have an iron test, again, because I had an iron deficiency.
Serum ferritin 17 ug/L (20 - 200)
She was given ferrous sulphate 200mg
They stopped giving her vitamin D and B12.
I carried on buying the B12 and have just started her back on the vitamin D spray and B complex.
The Endo has suggested taking Sytron 5mls or 10mls twice a day for iron instead of the tablets.
She has had two ultrasounds, one when she was diagnosed showing “heterogeneous echoes” and a nodule.
The other 3 months later showing the same but there was no nodule.
Her goitre was “smooth and diffuse.
We are waiting for a third ultrasound appointment.
She is currently taking 50mg in the week and 75mg at the weekend.
Her TSH is 0.13
As you can see my doctors have pretty much left us to it. All the tests were only done when I had a reason for asking for them.
She was only 13 at the time so I find this appalling.
I am so fortunate to have found this support group as it’s quite a lonely place having something like this fighting for every test to be done.
Sorry it’s so long winded!
After her GCSE’s have finished I will pay for the full thyroid and vitamin test.
Thank you for all your advice😊
So her antibodies were likely positive at 70 for Hashimoto's
Vitamin levels ALL low. Which is especially common with Hashimoto's
Terrible that these weren't tested as soon as Levothyroxine was started
Do you have Hashimoto's?
Sept 2016 - B12 terrible and her folate was low as well
B complex should help
Remember to stop taking vitamin B complex a week before testing as Biotin in vitamin B complex might falsely affect test results
Come back with new post once you get new results and ranges
Thank you😊
I have never had my thyroid tested but i am ringing the doctor today as I am not feeling very well.
Unlikely to get full testing
Impress upon them family history of autoimmune thyroid disease and request Thyroid antibodies tested
I will try but it’s like getting blood out of a stone 😞
If you have low vitamin D, B12 and low iron you clearly have gut malabsorption
Perhaps you both have Hashimoto's and/or gluten intolerance
Getting full Thyroid and vitamin testing for yourself and your daughter recommended
I have never thought of Hashimoto’s as I don’t have a swollen goitre.
Will look into it.
Thank you😊
Ord's Thyroiditis is equally common
Same result, but thyroid shrinks
Rest of the world calls both these Hashimoto's
Thank you very much😊
Which antibodies were tested? If it was the TPO Ab, generally the upper level for testing negative, is 34; so if your daughter's result was 70 it was a positive result. People can of course, have much higher levels than that, but nevertheless 70 is positive where the upper limit for negative is 34. If she was tested for Tg Ab, the upper level for negative is generally 115.
See from previous posts she had small dose increase in Levothyroxine
Bloods need retesting 6-8 weeks after each dose increase
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 or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients (Teva is only brand to make 75mcg)
To avoid Teva take 50mcg plus 25mcg
Or cut a 50mcg in half
Thank you for this information.
The Endo told us that eventually the thyroid will die and then she will probably have an increase from 50/70 to 125.
I didn’t know there were other types of thyroxine out there so now I will be aware of this😊
Some people notice no difference between most brands, though Teva upsets thousands
Teva is often/currently the cheapest, so is the only one pharmacy wants to supply unless you kick up a fuss
Teva, being lactose free, has mannitol in it. This seems to upset many people. Theory is mannitol changes gut flora.
Yes, Thyroud slowly dies off
Very important to regularly retest vitamin levels. Frequently we need to supplement so, or all of these to maintain optimal levels
Most endocrinologists are not aware of this. They only test for deficiencies, don't seem to understand that vitamins need to levels to be optimal. Not just somewhere within range
Vitamin D is frequently too low
B12 and folate work together, so important to test both together
Ferritin can be low, especially if she has heavy periods. Heavy periods are classic sign of being hypothyroid
Couple of questions about FT3 and antibodies
High antibodies 
Fluctuating Antibodies??? 
I don't understand antibodies.
Extremely high thyroglobulin antibodies
