Hello, I've posted before about my daughter's results from July 2017, with the GP telling us she was within range (TSH 3.38). Advice from people here prompted me to get some private bloodwork done via Blue Horizon, who have been great. The results are back, and as I expected. So back to the Gp with them to ask for steps to be taken to help her (better late than never I feel).
She was diagnosed as underactive in January and is currently on 50mg levythyroxine. July result of tsh 3.38 was said to be within range so no adjustments necessary. But we felt differently due to ongoing symptoms.
Big post ahead with lots of qs!
Total T4: 87 (nmol/L 59-154)
TSH: 7.24 (Miu/l 0.27 - 4.2)
Free Thyroxine: 15.3 (pmol/l 12.0 - 22.0)
Free T3: 5.1 (pmol/L 4.1 - 7.9)
Thyroid antibodies: 197.1 (IU/ml 0-115)
Thyroid Peroxidase Antibodies 388.6 (IU/mL 0-34)
She is borderline deficient in B12, Folic acid is low and has insufficient Vit D.
B12 256 (pg/ml 197-771)
Folate 2.2 (ug/L > 2.9)
Ferretin 34 (ug/L 13 - 150)
C Reactive protein 0.9 (mg/L <5.0)
25 OH vit D 38 (NMOL/l 50 - 200)
I just want her on the right levels of medication. I'm wary of cheap vitamin tablets being prescribed as an easy fix. We knew from initial hospital tests that her underactive thyroid was due to an autoimmune issue (runs in the family). I have fibromyalgia/ME and get 3 monthly B12 injections. I'd rather she didn't need to have them (and maybe betting ahead of myself) but am assuming the vitamin deficiencies are to do with problems with gut absorption?
Questions - anything I should be saying to the GP? I do want to know why her vitamin levels haven't been tested but I also just want to move forward and not play the blame game.
However, am I right that the children's hospital shouldn't be leaving her for 6 months without being tested/seen?
Could the GP question the validity of the private results from Blue Horizon since we did finger prick tests at home and posted samples off?
Given that her TSH was 3.38 in mid July and less than 3 months later is 7.24, I am assuming this is proof she is undermedicated and the problem is getting worse?
She hasn't had T3 measured until the Blue Horizon test. Is 5.1 acceptable? (The Blue Horizon range is 4.1-7.9
Thank you so much for your help/advice.
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suzeb0406
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We really need the reference ranges for the results, particularly since paediatric ranges are often different from adult ranges.
To add them to your post, click on the V in the little square beneath your post, click on Edit, make the changes, then click on Post or Submit or whatever the word is.
Could the GP question the validity of the private results from Blue Horizon since we did finger prick tests at home and posted samples off?
Yes he might, so have your answers ready before you speak to him.
Before you see the GP, email or phone Blue Horizon, quote your order number and ask which lab(s) were used to do the testing, then look them up online. Many of the labs that get used are also NHS labs. And even the ones that aren't NHS are still accredited as accurate by various bodies.
suzeb0406 As Humanbean says, please add the reference ranges. The FT3 range is different from all my tests with them in the past, so either they have changed or paediatric ranges are different.
Also, what are the vitamin and mineral test results?
Hi, I've updated the post with the reference ranges (new to all this!). Yes, Thyroid antibodies were tested and I've included them along with the vitamin results and ranges.
FT4 is low in range - 23% through it's range. It should be nearer the top end, at least in the upper third.
FT3 is low in range - 26% through it's range. It should also be nearer the top end, in the upper quarter.
The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo only. She needs an immediate increase in her Levo.
You could refer your GP to the article written in the doctors' magazine Pulse by Dr Anthony Toft, leading endocrinologist and past president of the British Thyroid Association, which states
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it off and highlight question 6.
Dr Toft also wrote a booklet "Understanding Thyroid Disorders", which states "many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above". The booklet is published by the British Medical Association for patients and is obtainable from pharmacies or Amazon for about £4.95. More evidence.
Well this confirms autoimmune thyroid disease aka Hashimoto's which is where antibodies attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in symptoms and test results. This is very likely the cause of the fluctuation in TSH that shows in her results. However, all tests should be done first thing in the morning after an overnight fast (water allowed) and leaving off Levo for 24 hours. If you do this every time it gives the highest possible TSH which is needed when looking for an increase in dose of Levo or to avoid a reduction. It also means that you can accurately compare results as conditions are the same.
You can help reduce the antibodies by adopting a strict gluten free diet which has helped many members here. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks. You don't need to be gluten sensitive or have Coeliac disease for a gluten free diet to help.
Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.
I think you should post on the Pernicious Anaemia Society forum for further advice, particularly as you also have a B12 problem requiring injections healthunlocked.com/pasoc Include Folate, B12 and Ferritin results along with any signs of B12 deficiency she may be experiencing.
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Ferretin 34 (ug/L 13 - 150)
This is low, it needs to be half way through it's range and a minimum of 70 for thyroid hormone to work. You should see her GP about iron supplements, or make sure she gets liver regularly in her diet. 200g a week maximum. Hide it in meat dishes such as cottage pie, casserole, curry, bolognese, etc., if she wont eat it as a meal on it's own.
If she's prescribed iron tablets they should be taken with 1000mg Vit C each time to aid absorption and help prevent constipation, and taken 4 hours away from thyroid meds and 2 hours away from any other medication and supplements as iron affects their absorption.
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C Reactive protein 0.9 (mg/L <5.0)
That's fine, it's an inflammation marker and it's nice and low.
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25 OH vit D 38 (NMOL/l 50 - 200)
This is very poor. She should be on D3 supplements. Maybe not low enough for loading doses but certainly she needs more than the 800iu D3 daily the GP will prescribe. Assuming it's the same for children as adults, I would suggest 5000iu daily and retest in 3 months.
The level recommended by the Vit D Council is 100-150nmol/L. When she's reached this level she'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Your doctor wont know about optimal levels and cofactors, they're not taught nutrition so if you discuss it with him be prepared for this information to be dismissed.
Is your daughter taking Levothyroxine or not yet diagnosed? She has thyroid antibodies showing that she has autoimmune thyroid disease otherwise known as Hashimotos thyroiditis. Her results may vary as a result depending on the activity of the antibodies. Levothyroxine is recommended for adults to help prevent activity of the antibodies and increase wellbeing but hopefully someone more knowledgeable will comment about what's recommended for children. FT3 looks a little low but taking levothyroxine should increase it.
All her vitamin levels are low or below range so you do need to address these. There should be paediatric guidelines on the NICE website or CCG local area guidelines. Make sure your GP follows these. Ferritin is a little on the low side, ideally it needs to be mid-range so you could ask your GP to do a full iron panel.
You could post the B12 and folate results on the Pernicious Anaemia Healthunlocked forum to seek advice for paediatric recommendations for B12 supplementation. New research seems to be suggesting that tablets can be effective but it probably depends what the cause of the deficiency is and they might be able to suggest what tests are advisable. Ensure your doctor investigates B12 deficiency prior to starting folate supplementation as it can mask B12 deficiency.
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