Help with my teenage daughter's blood results

[Auntbessy]

My daughter has just had various bloods done and the doc is happy with them. However I'm concerned about her T4. She is 13 and the range is 12-22. Hers us 12.1. T3 wasn't tested and her TSH is 1.5 and range is 0.27-4.2. Her vitamin D is also low. My daughter has low energy and mental health issues. What are people's thoughts? I am in this group because I have hashimotos.

[FallingInReverse]

I’ve managed my daughter through similar from that age through now - she’s 18.

Your best first step is to get a full thyroid and vitamin panel for her, including antibodies.

Are you well versed for yourself and can you get same for her?

[Auntbessy in reply to FallingInReverse]

Yes I know what to do and what to look for but she has extreme needle phobia so I cannot do a finger testing kit with her.

[FallingInReverse in reply to Auntbessy]

My daughter did too!!!!!!!!!!!

Isn’t it something!!!

She has had many a meltdown and even a few doctor appointments that had to be stopped without getting what we needed… delaying care for her… and as you know then waiting weeks/ months for the next appointment slot to try again.

Some of the highest stress points I’ve had as a mom ever.

There were some doctors who refused to let her come back to them!l for how hysterical she got.

Good luck… I suggest you read up on phobia treatments on the internet. I do not believe it requires a trained professional… as I put little faith in most “trained professionals” but as a mom it helped me envision what path the professionals suggest. Many if the things on the internet I could weave into my conversations with her, and I did put a plan down on paper and stayed on it no matter how long it took and how unreceptive she was.

In my experience, it didn’t get better until I addressed it head on.l and it was a serious risk to getting any healthcare support for her.

My heart is with you - it is very trying.

[helvella Administrator]

On another thread I posted this:

Be sure they are using paediatric reference intervals (ranges). By age 13 (edited), the differences are smaller, it is nonetheless important to do so.

helvella - Paediatric Reference Intervals

Discussion of the importance of using paediatric reference intervals for interpreting laboratory test results.

Last updated 18/07/2024

helvella.blogspot.com/p/hel...

[Auntbessy in reply to helvella]

These are pediatric ranges through our local hospital.

[Auntbessy in reply to helvella]

I think I'm not clear from everyone's responses whether her T4 level warrants investigation tbh. She did have other things tested. B12 was on the low end of normal (225ng/l). Vitamin D was below range (25nmol). Folate was a bit low but not bad (11.8 ugl). Ferritin low but in range (26ugl).

[helvella Administrator in reply to Auntbessy]

Well, I'd be concerned about that low an FT4 result, and also the other results.

But I really don't know the best, the right, way of approaching the issues.

All that ferritin result being in range means is that the range is too low! Clearly too low. Some labs have fairly recently increased the lower end of their ferritin ranges because they have long been far too low.

B12 needs to rise. And that can only be obtained from food, supplements or - in extreme - injection.

Folate - while within range - should rise a bit. But whether to use folic acid, folinic acid or methylfolate, I do not know.

Vitamin D needs to be addressed.

My real problem is not knowing whether to start tackling all of them - and, if not, what order? This is way out of my experience and I do not feel comfortable making suggestions which could be precisely the wrong approach. For one, it is usual to advise to supplement B12 before folate but the rationale for that has recently been questioned more deeply!

The only thing I am sure about is that she needs these to rise.

[Auntbessy in reply to helvella]

Thank you 🙏

[humanbean]

There is a problem...

Your daughter is only 13 and most private testing companies that deal directly with the public will only do business with people aged 18+.

If you were to buy a test and fake the date of birth (which I know some people have done before) you would get tests done, but the reference ranges used in interpretation of results would be ranges for adults not paediatric ranges.

I don't know if this is accurate, and I would suggest checking before spending any money, but I have heard that Blue Horizon Medicals will test people under 18. Phone them up and check before ordering.

bluehorizonbloodtests.co.uk/

Some useful links - but I don't know how much help they will be.

thyroiduk.org/testing/priva...

Another possibility - but more expensive - is that you try to find a private doctor. There is a list available of doctors in the private sector that at least one patient has liked and found helpful. But you would have to ask the Thyroid UK office for the list via email.

thyroiduk.org/contact-us/ge...

I don't know if the above link also includes a list of NHS GPs who might be helpful. You could ask.

[FallingInReverse]

humanbean out of curiosity, are you saying there is no NHS pediatrician who will provide these blood tests to a patient under 18?

[humanbean in reply to FallingInReverse]

No, that isn't what I'm saying.

If you can't get a GP to test more than TSH and who won't test all the nutrient levels and other tests you are interested in via the NHS e.g. thyroid antibodies, cortisol, an iron panel, possibly some others, then the only other options I can think of are doing postal testing with finger-prick samples of blood - but then you have the age problem of getting a private testing company to do the testing for a 13-year-old. And the other option I can think of is to see a doctor privately who obviously could arrange testing for people of any age - but then you have the expense of paying for the doctor and paying for the private testing. And a doctor organising private testing will probably take a cut of the cost. So, in total it would all be very expensive.

[FallingInReverse in reply to humanbean]

Got it! Tx for the explanation!

[Hedgeree]

Hi Auntbessy,

Is your GP aware of how unwell your daughter is feeling? How helpful is your GP or is there another in the practice you could see?

From a young age I was diagnosed with mental health problems and I had a low and sometimes below range FT4 for many many years. You need to emphasise your daughters low energy and mental health issues and get a GP that will take her symptoms on board.

You really do need to get full thyroid testing done. Not many GP's will test FT3 so you may need to find a private blood test company that will do blood tests on a child. Is she ok with a blood draw from her arm? I know how traumatic finger prick blood tests are for me I can't do them at all!

Also having such a low vitamin D will also be making her feel very miserable and compounding any low moods. I will tag SlowDragon as she often gives comprehensive info regarding supplements. I'm only relating to my own experience (and am not a medic) but if you get your daughter's vitamin levels increased she will feel much stronger mentally and her mood will improve.

It was a battle for me as I was continually told a low FT4 was 'my normal'. Again you really need to see a helpful GP in your practice and really get across to them how unwell your daughter is feeling. Now I have a higher in range FT4 I feel much better than I ever have done and my mental health has hugely improved.

Other forum members will advise on where to get blood testing for a 13 year old.

Her below range vitamin D is something that really needs attention now so get back in touch with your surgery don't be fobbed off! It is difficult when you have to battle with the GP to be taken seriously but you have to do this for your daughter.

[Auntbessy in reply to Hedgeree]

Hi Hedgeree thank you for your kind and supportive reply. It was my daughter's psychiatrist who ordered the bloods due to her very low energy levels. My daughter has OCD, anxiety and is possibly autistic (that's being investigated). This psychiatrist is very helpful and supportive and so is our GP actually as well. However, I have found that the NHS is just not interested in helping patients to get optimal levels I guess because of the guidance they receive and the financial constraints as well. This is my experience with my own difficulties with my thyroid and ongoing deficiencies anyway. I will raise my concerns with the psychiatrist though. Getting blood out of my daughter is a whole other nightmare as she has needle phobia and tiny hidden veins. We have lots of failed attempts. I'm on it now with upping her vitamin and mineral levels.

[Hedgeree in reply to Auntbessy]

Good that you have a helpful GP and psychiatrist. I've always found any psych people that I've been seeing are more concerned with and understand the implications of low vitamin levels just wish gp's were the same.

I had a needle phobia for many years but due to having lots of blood drawn over time I can now tolerate a blood draw (from my arm) but it's taken a long time for me to be able to do this. I've had people hold my hand, stress balls, having to lie down while they do it etc had to have sedation to be able to have a small filling as couldn't tolerate the needle near my mouth.

I still panic and my heart races but I don't run like I used to (literally) I use a lot of breathing techniques to calm myself and I think it's been the repetition as I've had a few operations so had to have blood taken pre op.

Finger prick ones not at all; it just got harder and harder so unfortunately have abandoned them altogether.

Best to start supplements one at a time incase some don't suit her. From my experience I would start with vitamin D and see how she gets on.

Take care.

[Schilddruse in reply to Auntbessy]

It's interesting you mention that your daughter might be autistic as hypothyroidism is very common amongst autistics as are symptomatic hypermobility/hEDS, low vitamin D and low folate (and these conditions may all be linked).

Low FT3 levels are linked to low dopamine levels which may at least partly explain anxiety and OCD symptoms (and also ADHD, although I know you haven't mentioned this).

Hypermobility isn't just being "bendy", but has widespread effects on the body including being linked to anxiety and fatigue, so if you have any suspicion that your daughter might be hypermobile, as a majority of autistics are, I would recommend reading up about the condition. Dr Jessica Eccles' research is a good place to start.

Unfortunately, most doctors will probably put your daughter's symptoms down to "psychological issues" and will know next to nothing about hypermobility, but it sounds like your daughter's doctors are at least prepared to listen.

Let me know if you want any further information. You can DM me if you like.

Best of luck!

[Jaydee1507 Administrator in reply to Auntbessy]

Another thing to look into would be dysautonomia or Postural Othostatic Tachycardia syndrome. A misdiagnosis for this would be anxiety & depression.

[RachelP03]

Hello, a very similar profile to my daughter too and also on the vitamin front. I think you would need to get a proper thyroid test completed for further information. We have very low T4 and high T3 so unless you know the FT3 level, it’s hard to advise for thyroid. Blue horizon do allow the fingerprick test for minors but I do appreciate it may be hard to do. Another is to find a private GP near you who can do the full bloods. At the moment though, I’d say you have very low D, very low iron and also very low B12. All of these things will make her feel awful and explain how she presents. You need to join other groups too that can help with this eg B12 society/pernicious anaemia. Vit D can be started straight away and it’s Winter now so advisable. Assuming she’s not far off adult size, she can probably take 5k units of Vit D along with 100K2. Start with this for a few days, check no adverse reaction, then add in magnesium at dinner (a cofactor). Once both of these ok, can start iron supplements, 20mg per day (solgar gentle iron is well tolerated) with glass of orange juice away from significant amounts of calcium or dairy as that hinders absorption. Now the B12 is difficult but educate yourself at B12info.com. Your GP at that level according to NICE guidelines should be doing further testing eg MMA, homocysteine, intrinsic factor etc. before starting any supplements (or fortified foods eg cereals, marmite etc) for B12 as that will confuse testing. I do wonder if your daughter has absorption issues given such low levels. Has she ever had celiac test done? Any vegan/vegetarianism? Good luck. A good nutritionist as well should be able to help with this side of things too.

[Auntbessy in reply to RachelP03]

Thank you so much for your advice that's really kind and helpful of you to give me a bit of a protocol to follow : )

[bikebabe]

hello Auntbessy- you’ve had advice re thyroid. Mine is about the needle phobia. My daughter had that and couldn’t tolerate any medically invasive procedures from age 6 til she was 15 which was traumatising for us as well as her. We were very lucky in securing a CAMHS referral for a 6wk desensitisation programme and happy to say it was so effective that she can now tolerate all the procedures she needs ie blood tests, covid /flu injections, smears, dental anaesthetic injections. She still hates them and uses EMLA cream where possible even as an adult but at least the essential things get done. I vaguely remember it involving oranges and how to breathe through the stress. Suggest asking GP for a specific camhs referral to this specific desensitisation programme if it still exists so she’s not caught up in the general 2 yr waiting lists.

[Tina_Maria]

There are some thyroid changes occurring between the ages of 11 to 15 during puberty, which may influence her readings. Having said that, her T4 seems quite low and as the T3 was not tested, we cannot see if her T3 levels are equally low or a bit higher. If Hashimoto's runs in the family, there is sadly a high likelihood that she may develop it as well.

In the first instance, I would concentrate on her vitamin and mineral levels and try to increase them, as low Vit Bs, low iron and low Vit D is associated with low moods, so this would need to improve. Although the recommended Vit D intake for a 13 year old is the same as an adult (600mcg/d), this will be too low to raise the levels significantly and she would need to take a higher dose (maybe try 2000-3000IU + Vit K2 for a few months and then retest). Magnesium supplementation might be advisable as well for more energy and improved mood and it helps when you take it with Vitamin B's and Vit D for better absorption.

Not sure when the thyroid test was done for your daughter, but I would also try to get a full thyroid panel done (TSH, T4 and T3) plus antibodies, so you can see where the levels are (and if they are consistently low) and if there is an autoimmune reaction at work.

[SlowDragon Administrator]

You need to get her GP to test folate, B12, ferritin and thyroid antibodies

Ideally TSH, Ft4 and Ft3

Retest vitamin D, folate, ferritin and B12 at least once a year

How low was vitamin D

Is she vegetarian or vegan or a picky eater

Low vitamin levels common with low thyroid levels

Low thyroid levels often result in difficulty digesting meat….and many hypo patients end up avoiding meat …..resulting in lower Iron/ferritin

ESSENTIAL to maintain GOOD vitamin levels when hypo, otherwise TSH tends to reduce making it even harder to get diagnosed or ……on high enough dose levothyroxine once started on Levo

Please add most recent vitamin test results

Aim to maintain

Vitamin D at least over 75nmol

Serum B12 over 500

Active B12 over 70 (private test)

Folate at top of range

Ferritin at least over 70

If BOTH thyroid antibodies negative request ultrasound scan of thyroid

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

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Mental issues including Bi-polar and Hashimoto's

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