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Low Vit B12 and Hypothyroidism in teenage DS

11 replies

movingnorthsoon · 26/01/2024 22:02

Does anyone have any experience with this? My mum has Hashimoto's and I gather it is heritable. 13yo DS has just been found to have low B12 (he eats plenty of animal products so it isn't diet related) and it looks like (as yet) subclinical hypothyroidism. I know both the Vit B12 and the thyroid issues can be treated, but will it mean lifelong daily pills? From 13? It seems a bit daunting, especially when both these issues are more common at age 50+. I know from my mum that life can be fine on levothyroxine and 3-monthly B12 injections. But her issues began at about age 40.
At the moment DS is getting daily 1000microgram B12 tablets and the thyroid is being further investigated. TSH is high and free T4 is on the low side of normal. Though I'm not sure if 'normal' is the same for teenagers?
Has anyone got experience of their teen developing thyroid and b12 issues? Do they sometimes 'outgrow' it?

Right now we're focused on getting him to feel better in the short term, where the B12 tablets should help. At the same time it seems like a momentous situation. Did he have the last day of his life without a tablet last week? I know it could be far worse, it just feels like the carefree (privileged) days of just assumed good health are suddenly over.

OP posts:
Are your children’s vaccines up to date?
Wolfpa · 26/01/2024 22:04

I got diagnosed with both of these when I was 14, it’s not a big deal and Ion the bright side they will never have to spend a penny on prescriptions

movingnorthsoon · 26/01/2024 22:33

Thanks Wolfpa, somehow I just considered these to be 'adult' issues.
Do you take levothyroxine and if yes, do you have to frequently adjust dosage etc or is it just at a comfortable level and never needs changing? Did you find the right doses quickly or was it a long process of trial and error? Do you have to have regular blood tests to check levels or do you only go in if and when you don't feel well?
Obv. don't answer if not comfortable, it's just that we're at the beginning of this journey and wondering what to expect!

We're no longer in the UK and there is no such thing as free prescriptions here. But I'm curious, why would DS never have to pay for a prescription?

OP posts:
Octavia64 · 26/01/2024 22:47

My DD was diagnosed with it at 16. Through her I know several others diagnosed as teens.

Yes it means a daily pill. It took about 9 months to stabilize her with appts and blood tests each month.

Thingsthatgo · 26/01/2024 22:55

I take a tablet every morning as soon as I wake up -the only annoying things is I have to leave 30 minutes before I have tea or coffee. I often forget that I'm even on medication when I have to put it down on a form.
May I ask what symptoms your DS had before you saw the doctor? I only ask because I am wondering about my DS11.

movingnorthsoon · 27/01/2024 05:00

Thanks Octavia. None of those diagnosed as teens that you got to know outgrew it, I guess? I've been holding on to the idea that recent massive growth spurt has left his body 'unbalanced' and therefore it might yet balance out again... Probably clutching at straws though.
Did your DD see a paediatrician or an endocrinologist? Or just GP?

OP posts:
movingnorthsoon · 27/01/2024 05:53

Thingsthatgo, I've been wondering about best time to take the B12, as it should be on empty stomach. Mid-morning at school perhaps. He'd need school to be on board with him setting a reminder on his phone or he'd be always forgetting.

I wasn't expecting this at all when I took him to the doctor's. It was just a lasting set of things that each was not very remarkable but in conjunction meant he was having more and more days of feeling unwell and fewer and fewer days on which he was completely well.
-Recurring tummy aches which I suspected might be due to constipation.(now I know that low B12 can cause constipation)
-occasional 'racing heart' even when calm and at rest

  • increasing bouts of dizziness/feeling faint which I thought was just a low blood pressure issue, probably due to growth spurt
These were the things I told the GP who at first didn't seem too concerned but 'luckily' DS demonstrated the issue by nearly fainting while wearing the blood pressure measuring thing!

I had also noticed that he was often very pale, he got headaches, once he got tinnitus for a short while, once he got pins and needles in his feet, all things I never put together, but now I know they read like a symptom list of low Vit B12.
He also gets dry, itchy skin.

He was/is also frequently very tired. This I took as normal as he often couldn't fall asleep. So if he was still awake at 1am and then had to get up for school at 6:30, obviously he was tired.
For this reason I also didn't take him to be seen for a long time, I figured it could all be due to lack of sleep.
Turns out that lack of B12 can mess with your melatonin production, causing problems falling asleep!

So symptoms for now all about the B12, which makes sense as the thyroid is still subclinical.

Though actually the thyroid values are high for TSH, low normal for free T4, and high for free T3. This stumped me for a bit but it seems that in the early stages of Hashimoto's, T4 goes down, causing TSH to go up (feedback loop), causing a higher rate of T4 to T3 conversion, using up all reserves so to say. So for a short time you can be 'hypo' and yet have high T3, before it crashes out.
My mum was like that, all the symptoms of hyper, losing lots of weight. Then crashed with huge problems (brain damage probably from low B12) putting all the weight back on and more, all the worst symptoms of hypo, finally diagnosed with Hashimoto's. Took her years to get her life back and some of the brain damage is permanent (visible holes in her brain in scans) but she seems to have eventually built new pathways in her brain around the holes, and has gone from completely disabled to fully functioning and enjoying life.
I'd really like to avoid this for DS obviously! So will not be taking any chances with the B12 and keeping a close eye on those thyroid levels.

OP posts:
Remmy123 · 27/01/2024 16:29

My son thyroid is abnormal - he has blood test for another issue and this has been picked up although he had no symptoms we are aware of

he has thyroxine v low dose he feels the same but often doesnt take it on empty stomach as so hard to juggle before school etc

its for life if it's an autoimmune condition

has you're child had the test to see if any antiiodies?

Remmy123 · 27/01/2024 16:33

His results are:

TSH 0.09 range is (0.35-4.94)
T4 8.8 range is (10-14.3)

Wolfpa · 28/01/2024 15:07

movingnorthsoon · 26/01/2024 22:33

Thanks Wolfpa, somehow I just considered these to be 'adult' issues.
Do you take levothyroxine and if yes, do you have to frequently adjust dosage etc or is it just at a comfortable level and never needs changing? Did you find the right doses quickly or was it a long process of trial and error? Do you have to have regular blood tests to check levels or do you only go in if and when you don't feel well?
Obv. don't answer if not comfortable, it's just that we're at the beginning of this journey and wondering what to expect!

We're no longer in the UK and there is no such thing as free prescriptions here. But I'm curious, why would DS never have to pay for a prescription?

It took about a year for me to stabilise and now I have a blood test every year to check/ I request one when I am not feeling well (normally it is my hair coming out at an alarming rate)

Hypothyroidism is on a list of exempt conditions so in the UK you get life long free prescriptions.

You need to take levothyroxine on an empty stomach and wait 30 mins before eating so I find taking my thyroxine first thing in the morning works.

I get vitamin b12 injections so don’t have to worry about taking them daily.

MaloneMeadow · 30/01/2024 01:25

Have they tested him for pernicious anaemia?

mamacorn1 · 30/01/2024 01:29

My dd has hashimotos and she is 7. They won’t formally diagnose till her teens but she takes Levoxthyrine every day. It’s good to get into a routine, and my dd take a crushed pill with jam every morning before school.

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