Hi, I'm writing here about my 14yr old daughter. In November, I took her to see a GP, where her tiredness was discussed. GP said she would request thyroid blood tests. 2 weeks later, she had a nurse appointment for bloods. A couple of days later, I received a letter from the surgery, saying that some of her thyroid results were abnormal and that I had to make another appointment for bloods in 8 weeks, to re-check. I asked for a printout of the results - FT4 12.4 (12.6-21.0 range) and serum TSH 3.41 (0.51-4.3 range). FT4 was slightly below normal range. She had the second test last week and we got the result on Wednesday. I don't have the exact figure, but FT4 is at low end of normal range (I think 14). As my daughter is still experiencing fatigue, I made another appointment, to discuss this (2 months later we are no closer to finding out what might be wrong with her and the thyroid test was only part of the investigation). It was a different GP and I saw her yesterday. Whilst looking at the November results and insisting that there were no further blood results, she told me that the result was normal, which it clearly wasn't, otherwise I wouldn't have received a letter saying it was abnormal. She then found the recent results and said her thyroid was normal. So, we agreed on that and she seemed confused as to why we were there at all. I have a lot of issues with the way in which the appointment was conducted, which I will not go into here. But, I want to know what others' thoughts are on the results and whether I ought to pursue matters further, in relation to possible thyroid issues (maybe even due to iodine deficiency, as my daughter has a poor diet). Thank you.
14yr old - Don't think all the necessary blood ... - Thyroid UK
14yr old - Don't think all the necessary blood tests have been carried out
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if cause is autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
Is there autoimmune disease in the family?
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done in morning
This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies
thyroiduk.org.uk/tuk/testin...
For thyroid including antibodies and vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )
monitormyhealth.org.uk/thyr...
Blue Horizon do allow testing of a minor. But Medichecks probably not
Thank you. Her B12, folate and ferritin levels were tested too. They were all within the normal range, but folate is on the low side of normal and I do wonder if it might be worthwhile supplementing with natural folate. Her vitamin D was not tested and I should have asked for this to be done. But, the GP was really awful. I'm actually writing a letter of complaint, something which I have never done about an NHS employee before. I would rather get a private test than go back and argue with any of the doctors there, so I will look at the Blue Horizon. I've used Thriva for myself, but I don't think they test children.
There is some autoimmunity in the family, but not immediate - several of my cousins with IBD. I personally have issues which have never been diagnosed, eg an intolerance to corn which gives severe gut issues, but nothing has ever shown up in any tests. My autoimmune antibodies always come back as normal. I had solar urticaria, for many years, which caused blistering in very little sunshine, but only on my upper chest, which I have solved with the herbal supplement astaxanthin. The rash on my chest was identical to someone I know who has lupus, but hers is 100x worse. That said, I'm much more careful in the sun than she is.
You can order just vitamin D test here £29
NHS postal kit ....extremely easy to do
Can you add the actual results and ranges on Ferritin, folate and B12
Sorry for taking so long to respond. I've just not had time this weekend to give this thread the attention it needs.
B12 396 pg/ml
folate 4.55 ng/ml
ferritin 49.2 ng/ml.
Thanks again.
Sorry we need the ranges on these
The figures in brackets after each result
They all look on low side ....but need ranges to be certain
Also need vitamin D tested -£29 NHS postal kit if GP unhelpful
Heavy periods are common when hypothyroid and can lead to low ferritin/iron
Hi, I posted the ranges just after the post giving the figures. But, you responded really quickly, in between my 2 posts (thank you for being so fast).
She does have very heavy periods. They are not completely regular yet and are now coming about every 6 weeks. But, when she gets them, she uses night time towels, for about a week.
I meant to put in the ranges, sorry.
B12 396 (197-771)
folate 4.55 (3.9-26.8)
ferritin 49.2 (14-186)
B12 under 500 can be too low
Folate under 10 can be too low
Unlikely to get GP to agree to further testing ....but you could ask
Supplementing with a good quality daily vitamin B complex may help improve, one with folate in not folic acid may be beneficial.
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day or even start with just half a tablet daily after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
Low vitamin D and low B vitamins may be linked as explained here
drgominak.com/sleep/vitamin...
healthunlocked.com/thyroidu...
Iron and ferritin
Ferritin under70 is considered low....again GP may not agree.
Underline how heavy her periods are
GP should run full panel test for anaemia. Heavy periods are going to significantly reduce her iron levels
Iron is complex and always need GP to oversee
Vitamin D needs testing
We had some DNA tests a while back, as I had dangerously low B12, but tests for pernicious anaemia were negative, so docs put it down to diet. I wasn't convinced that my diet was so lacking in B12, so I got a DNA test from MTHFR Genetics UK, to look for relevant mutations. I was right, so I now take a methyl B12 supplement and also natural folate, rather than folic acid. My daughter's mutations aren't as significant as mine, but since blood results show that B12 and folate are on the low side, I think she would benefit from supplementation. Trying to get my daughter to take any supplements has been difficult, but now that we have these results, I think I will persuade her more easily. However, I don't want to interfere with results of a private blood test. Would you recommend holding off on the supplements until that's sorted out? I've no intentions of hanging about, so it should be just for a few days.
Yes always test first....especially with B vitamins
Once you start supplementing B12 you have to wait months without supplements to get true base test
Interesting about MTHFR testing.....I am fairly convinced I have this.
Low B12 may be a consideration with autism ....perhaps due to restrictive diet
autismspeaks.org/expert-opi...
ncbi.nlm.nih.gov/pmc/articl...
I'm not sure if you are aware of how to get the best results from blood tests. . Here is the method:-
The earliest possible appointment - fasting (she can drink water).
If taking thyroid hormones you'd allow a gap of 24 hours between last dose and test and take afterwards. This helps to keep the TSH at its highest as it drops throughout the day.
We usually take levothyroixine (a thyroid hormone replacement) first thing when we get up with one glass of water and wait an hour before eating. Always get a print-out of blood test results and ensure the ranges ae shown. Labs differ and so do ranges which enable members to respond.
Some prefer a bedtime dose, in that case if having a blood test next a.m., miss this dose and take after test and night dose as usual.
Also check B12, Vit D, iron, ferritin and folate.
Has doctor checked for thyroid antibodies. If antibodies are present, that means the patient has an Autoimmune Thyroid Disease but treatment is the same.
thyroiduk.org.uk/tuk/about_...
I note - TSH 3.41 (0.51-4.3 range) and if you're in the UK, doctors seem to have been directed not to prescribe until TSH is 10. In other countries we'd be directed if TSH goes above range along with symptoms.
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/diagno...
thyroiduk.org.uk/tuk/testin...
thyroiduk.org.uk/tuk/testin...
If antibodies are present, daughter should be prescribed as she'd have an Autoiimune Thyroid Disease.
Unfortunately for us, the patients, doctors seem poorly trained and only look at the TSH result which is from the pituitary gland and tries to flag up the thyroid gland to provide more hormones.
Thank you for all of this information. It is very useful.
p.s. There are private labs that do home finger- prick blood tests. If you decide to do this method, make sure daughter is well-hydrated a couple of days before.
This is just for information but many members do use this
I can't add to the excellent advice above, but just thought I'd lend my sympathy to your daughter. I remember being her age and struggling with fatigue, memory (hitherto I'd had an excellent memory) along with other odd, unexplained symptoms. I was also told thyroid tests were 'normal', but I discovered decades later that a full panel had never been done, let alone tests of essential nutrient levels. I wasn't fully diagnosed with hypothyroidism, PA and other problems until my thirties.
If, like me, you have any autoimmune disease in the family, insist on a full blood count, which should include products of cobalamin (B12) and folate metabolism: methylmalonic acid and homocysteine. B12 and folate levels alone are not a good indicator of deficiency. Vit D3 also essential. Deficiency in magnesium and selenium are very common, causing fatigue and other symptoms.
Your daughter has you on her side, which in many ways is the most important guarantee of her future wellbeing. I had no-one on my side at that age, which made life almost impossible at times.
Thank you. I am going to get a private blood test for her and will bear in mind what you've said about selenium and magnesium too.
It would really help to have a blood test for TSH, fT3 and fT4 with perhaps thyroid antibodies. When you say she has a poor diet does this mean very low calorie? A very restricted low calorie diet can reduce thyroid hormone levels. A 'bad' diet i.e. junk food isn't so bad from a thyroid point of view. Young girls are particularly vulnerable to low iodine levels but they should be measured before taking iodine supplements. Fish and milk are good sources of iodine if she is borderline. As she is experiencing tiredness I assume they have checked her iron levels, if not they should do.
I think TSH, fT3, fT4 (all three) are the most important results, the NHS is very reluctant to do fT3 so you may need to have a private test.
Thank you for your response. Her choice of foods is restricted and her diet is very sugar/carb heavy, but she gets enough calories and her weight is fine. She has autism, so this isn't unusual. She does get plenty of milk (will eat breakfast cereal, rather than any meal I cook for her) and she does eat fish (one of the few other things she eats regularly is tuna sandwiches). It's more lack of fruit and veg than anything else that I worry about and the sugar slums that she must be having, on a regular basis. She doesn't eat any veg, except for lettuce on her tuna sandwich and when she eats canned carrot and butter bean soup.
That should say 'sugar slumps'.
From a thyroid point of view her diet is fine, seh is not low calorie and is probably getting enough iodine. I think a TSH, fT3, fT4 blood test would be useful (must include fT3) but it might be easier to get the doctor to try her on levothyroxine. The low fT4 is not normal, but might be OK if her fT3 was good. Often GPs can't get an fT3 test run, it's nonesense as it is very cheap for hospitals to do, hence trying to get a prescription for levothyroxine might be easier. She would need to be on at least 50 mcg daily for it to be an effective trial.
DIY finger prick test can be tricky to do. Would recommend paying extra for private blood draw
Thank you. I have done a DIY finger prick test for myself and it was difficult, as my blood clots readily. I sent it off and it was all clotted and I had to do it all again. But, my daughter bleeds more freely. I'm going to let her decide, but might come to regret that!
any dr who is 'confused by why a patient is there' has failed to grasp the concept of their job, and is not worth seeing again.
Yes, I will definitely not be going to see her again. I have hardly slept all weekend, thinking about things she said and her manner. I did write a complaint, but I am unlikely to send it, although her manner warrants being addressed.
Hi,
Severe b12 deficiency symptoms can occur with an in range b12 result but some GPs may not know this.
I speak from personal experience of having typical B12 deficiency symptoms with most B12 results between 300 - 500 ng/L.
For more info about B12 deficiency, have a look at Pernicious Anaemia Society forum on HU. Many on the PAS forum also have thyroid issues.
B12 deficiency in children
b12deficiency.info/children...
UK B12 document
BSH Cobalamin and Folate Guidelines
b-s-h.org.uk/guidelines/gui...
Pernicious Anaemia is an auto immune condition and you mention a family history of auto immune conditions.
PAS (Pernicious Anaemia Society)
Based in Wales, UK.
pernicious-anaemia-society....
Has she been tested for Coeliac?
NICE guidelines Coeliac Disease
nice.org.uk/guidance/ng20/c...
B12 books I found useful
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors). Very comprehensive with lots of case studies.
Her ferritin results were within range but there are other iron tests they could do.
Iron Studies
labtestsonline.org.uk/tests...
I am not medically trained.
When we develop one autoimmune condition it is common to develop others.
I was diagnosed with pernicious anaemia and never developed symptoms but that was due to a good doctor doing thorough multiple checks and that was my first experience of an excellent doctor. At my second appointment with him he was very concerned that my 'blood looked different'. I told him my mother had pernicious anemia. I then had a 'nuclear test' and that confirmed P.A. and I've been having B12 injections since.
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