11yo latest results

[RachelP03]

Hello All,

Here are my daughters latest results, I’m still battling with GP plus NHS consultants to get anywhere. She has only been off any B12/folate for 5 weeks (she does eat B12 fortified foods) but has been taking iron. Her medical history is low platelets but she obviously also has hashimotos. Really low FT4 but high FT3 (body flogging itself or low iodine?), very bizarre. Symptoms: tiredness, lack of stamina, breathlessness at times, insomnia at times, brain fog etc.

I can see her folate and D are also very low.

Thoughts? I’m really battling hard for some B12 injections but no one wants to agree (paeds, haem paeds) and since she is a minor, it’s very hard! I have a follow up paed haem appointment next week.

Thank you.

[Jillymo]

Hi Rachel,

Your daughters thyroid levels need looking into, is she under the care of an endocrinologist ? It might be an idea if you havn't already done so to pop her results on Thyroid UK.

[JanD236]

I think it might be important to treat one thing at a time so that you know whether or not you’re on the right track.

Your daughter’s thyroid results definitely point towards there being a problem whereas her B12 and folate look fine.

If she were my daughter I’d be looking at her thyroid needing treatment. I wouldn’t at this stage consider B12 or folate.

[Corney23uk]

Hi Rachel,

I don’t know. My daughter has Hashimoto’s and was first diagnosed about 14 but was just monitored not treated - she never really lived her life to the full. In her mid 20’s her body basically gave up with B12 deficiency and there have been serious consequences. Her thyroid antibodies were exceptionally high and did reduce significantly on B12 injections. I don’t think anyone understands all the science yet.

My daughter’s B12 deficiency is functional, thank god for the Active B12 test. Knowing what I know now, if I had my time again I would be testing her Active B12 every three months and getting her to take no fortified foods for a week before.

The other thing I will say is that Active B12 is actually in the indeterminate range see NICE guidelines and you could request the consultants do a homocysteine and MMA test to check.

Hope that helps

[Sleepybunny]

Hi,

I think worth pushing her doctors to also test MMA and Homocysteine if not done recently.

This link suggests testing MMA if Active b12 is 70 or below.

synnovis.co.uk/our-tests/ac...

Link about MMA

labtestsonline.org.uk/tests...

Link about Homocysteine

labtestsonline.org.uk/tests...

Have you talked to PAS?

Parents can join on behalf of children and a PA diagnosis is not needed to join.

pernicious-anaemia-society....

PAS have info on PA in children (juvenile PA).

pernicious-anaemia-society....

Some forum members have been supported by the person who runs B12info.com.

Lots of useful info on website.

b12info.com/

Have doctors checked her iodine levels?

I read an article from 2011 that suggested low iodine levels were quite common in teenage girls.

bbc.co.uk/news/health-13034582

Search online for "low iodine uk girls" for more info.

I left links on one of your previous threads that might be of interest.

I'm not a health professional.

[Darwin196]

keep battling don’t give up you’ll get there in the end