10yo daughters results HELP!

[RachelP03]

Hello, I have posted before regarding my daughter who is 10yo but we have just had some very unusual and worrying results which may explain her health issues. She has a long term history of low platelets and I’ve been trying to solve this for her as it has been unexplained. We have strong family history of thyroid disease (she also has DIO1 single/DIO2 double defects) plus a few family members on B12 injections (none have had pernicious anaemia or issues with intrinsic factor discovered though. I am currently going through the motions for B12 investigations as my active B12 is at the bottom of the range).

My daughter has had her low platelets diagnosis since 2016 when she was about 3/4 yo but it could have been from earlier in life. During birth which was very traumatic for her, I had probably been on gas and air (which depletes B12 stores) for near enough 24 hours. During her first year of life she was put on omeprazole (a strong dose) because she could never settle (constant crying) and appeared reflux/allergic.

Her results suggest she has an issue digesting/processing certain things as despite eating a very healthy and varied organic diet with lots of meat/fish/eggs, her active B12 is on the floor and her ferritin has been dropping off. She has always taken a multivitamin as well with both these things in. She was only off this for two weeks before this test. The NHS has tested her B12 in the past but this was always total B12 only and this number has always been high in range, I never thought to question it. It is only by chance I tested my thyroid recently with an active B12 test in it and discovered it to be low that I realised hers has never been tested and wondered if she had issues with this as well.

Anyway, it looks like she needs B12 injections to boost her but I’m wondering about whether there is a general digestion issue at play (given low ferritin too) and also what is going on with her thyroid…? The last thyroid test had mildly elevated antibodies but these are through the roof but her FT4/FT3 are ridiculously high also. Cortisol also too high, again! At the time of the test we tried to do a FBC but those bloods didn’t arrive at the lab stable so they couldn’t do them. We know our daughter was suffering from low platelets at the time as she had several large unexplained bruises on her leg (one like a hematoma) and a “cold”.

Anyone with any advice or similar experiences, it will be gratefully received! Thank you!

[Forestgarden]

Hi there, has your gp seen these results? There is a lot going on here. The results show she is hyperthyroid and needs medication. And there is a clear link between thyroid hormones, gut issues (ibs, ibd, coeliac), low stomach acid, and absorption. As well as dealing with thyroid hormone and B12 levels asap, my feeling would be to work on healing her gut. That means identifying and removing food intolerances, eating bone broth, prebiotics and probiotics to heal gut, plus fish oil and turmeric to reduce inflammation. The book I found really useful when sorting my own gut out was by Nour Zibdeh on Amazon "the complete acid reflux diet plan".

[greygoose]

She most definitely has Hashi's, and is going through a Hashi's 'hyper' swing. She does not need treatment for hyperthyroidism. These levels will go down by themselves.

What she does need it testing for Pernicious Anemia with that low B12.

her active B12 is on the floor and her ferritin has been dropping off. She has always taken a multivitamin as well with both these things in.

Yes, but, taking B12 with iron will block absorption of the B12. Iron blocks absorption of just about everything except vit C. Which is one - just one - of the reasons we never recommend multi-vits on here. They are just throwing money down the drain.

Her iron is low, yes, but her folate is good. So, I don't think it's all down to digestion issues, but hypos do tend to have low stomach acid, as Forestgarden says. How about vit D, has that been tested?

[greygoose in reply to greygoose]

If you take these results to your GP and he says it's Graves' - which he is very likely to do because they don't know the difference! - don't let him treat her for Graves' without first testing antibodies for Graves':

TRAB or TSI.

[RachelP03 in reply to greygoose]

Thank you very much, hashi storm was my gut instinct reaction too but I will also get her tested for graves but before any treatment ensues. I think B12 may be driving a lot of issues but will follow through with everything. Her Vit D is above and slightly low but not too horrendous! Thanks

[greygoose in reply to RachelP03]

Well, I wouldn't go as far as 'hashi's storm'. I think you're getting muddled with thyroid storm... But, Hashi's 'hyper' swing, yes. But doctors have a knee-jerk reaction when they see a very low TSH and immediately start talking about Graves', so beware!

[Buddy195 Administrator]

As greygoose has said please ensure thatyou push forthe correct antibody tests if medics suspect Graves. I was misdiagnosed as Graves/hyperthyroid but was encouraged by forum members to get correct antibodies checked & im actually hypo with Hashimotos. As GG explained, it’s possible to have a ‘hyper swing’ with Hashimotos…. I certainly did!

 Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

[RachelP03 in reply to Buddy195]

Thank you for this, I will ensure we get this tested first.

[RachelP03]

Thank you everyone for your replies. I will ensure she doesn’t get treated for Graves unless we have investigated the antibodies fully. My gut feel was that it was a hashis storm which was raging due to her “cold” affecting her autoimmune issues! I suspect we need B12 testing but also to get injections ASAP! Thank you for the inputs.

[J972 in reply to RachelP03]

And just to add that you need to get your daughter thoroughly tested for PA before supplementing with B12. I see you’ve posted on the PAS site too 👍

[janeroar]

Wondering if she is having more bloods done whether it’s worth also having her tested for coeliac?

[RachelP03 in reply to janeroar]

She has had coeliac tested previously with a negative result but I know this doesn’t always definitely means she doesn’t have it! She has inherited some coeliac genes as well from me so it could be a trigger. Need to look further into B12, see a gastro and an endo! Thank you.

[janeroar]

From Coeliac.org -

It’s possible to have a negative blood test and still have coeliac disease. If you weren't eating gluten at the time of your blood test, you may have received an inaccurate result.

If you have ongoing symptoms that suggest coeliac disease but have had a negative blood test, ask your GP to check to see if you have been tested for IgA deficiency.

IgA deficiency

Some people with coeliac disease do not make the usual coeliac disease antibodies. This is called IgA deficiency. When the laboratory is measuring your antibody level they should also check your total serum IgA to detect IgA deficiency. If you are IgA deficient the following tests should be considered:

Immunoglobulin G (IgG) EMA

IgG deamidated gliadin peptide (DGP)

IgG tTG

If you have tested negative for coeliac disease, particularly if you have Type 1 diabetes or you are a close relative of someone with coeliac disease, it is important to note that coeliac disease may present with a wide range of symptoms and you should consult with your GP if any symptoms arise or persist.