In the past few months my 13 year-old daughter has been low in energy. Falling asleep in the afternoons, etc. Very unlike her.
I can see from the printout she needs iron supplements, but I’m wondering why this could be the case since my daughter’s a real meat eater, and we get fresh organic veg delivered from the local farm. Our diet is excellent.
Could the iron deficiency be as a result of coeliac disease? I see she has a negative result, but since I‘m ceoliac and I know they can be negative despite symptoms, I’m not entirely convinced!
Historically my daughter’s been allergic to milk protein, and in February dairy was reintroduced to her diet under the NHS paediatric gastroenterologist (she was cheating on her diet at school anyway, which is partly why we started down this route). It’s very difficult to measure milk allergies, but could this be having a negative effect on her vitamin absorption?
So far my daughter has only ever had one period - in March.
What supplements would be good for a growing girl in this situation? I’m guessing sublingual in terms of absorption?
Additionally, I know there are no T3 or FT3 levels here, but I wonder if you could help decipher the information provided.
Of course, the GP’s had the results for a few weeks and since they didn’t contact me about them, I went in for a printout myself this morning!
I’m coeliac, hypothyroid and supplement with T3. My daughter has lovely strong nails - the exact opposite of me! - and doesn’t seem to have symptoms of hypothyroidism. However, she has hypermobility, and is ADHD (like her sister and both parents - ie: me!) so her system is pretty sensitive.
Any input gratefully received. Thank you!
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I can't comment about coeliac but can tell you that her full blood count doesn't suggest anaemia but with her ferritin that low there could be iron deficiency so I'd ask the GP for an iron panel to include serum iron, transferrin saturation, total iron binding capacity as well as ferritin.
I would also ask for the following to be tested:
Vit D
B12
Folate
What supplements would be good for a growing girl in this situation?
Nothing until results of those vitamin tests have been received,
I would also be concerned about:
TSH: 0.79 (0.7-4.17)
FT4: 11.6 (11.4-17.6)
Her FT4 has barely scraped into range and with TSH very low one would expect to see it much higher.
I am not medically trained, and I am not diagnosing, but what could possibly be indicated here is Central Hypothyroidism. This is where the problem lies with the hypothalamus or the pituitary rather than a problem with the thyroid gland. With Central Hypothyroidism the TSH can be low, normal or slightly raised, and the FT4 will be low.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In Primary Hypothyroidism the TSH will be high. If there is enough hormone then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
However, with Central Hypothyroidism the signal isn't getting through for whatever reason. It could be due to a problem with the pituitary (Secondary Hypothyroidism) or the hypothalamus (Tertiary Hypothyroidism).
Your GP can look at BMJ Best Practice for information - here is something you can read without needing to be subscribed (you can only read the Summary but make sure you click "Read More" as well:
You could do some more research, print out anything that may help and show your GP.
As Central Hypothyroidism isn't as common as Primary Hypothyroidism it's likely that your GP hasn't come across it before. You may need to be referred to an endocrinologist. If so then please make absolutely sure that it is a thyroid specialist that you see. Most endos are diabetes specialists and know little about the thyroid gland (they like to think they do and very often end up making us much more unwell that we were before seeing them). You can email Dionne at
tukadmin@thyroiduk.org
for the list of thyroid friendly endos. Then ask on the forum for feedback on any that you can get to. Then if your GP refers you, make sure it is to one recommended here. It's no guarantee that they will understand Central Hypothyroidism but it's better than seeing a diabetes specialist. You could also ask on the forum if anyone has been successful in getting a diagnosis of Central Hypothyroidism, possibly in your area which you'll have to mention of course.
Thank you SeasideSusie for your thoughtful and thorough response. I'm used to going through all this for myself - with the help of your collective navigating! - but for my child it's a whole different worry.
I really appreciate the time you took to respond to my query: I had noted the TSH and FT4 levels looked extreme, but lacked the understanding to know why.
As always the GPs have overlooked it all, so thanks again for your input: we'd be lost without you!
Argh, I'm so upset! I've just spoken to the GP and he won't refer my daughter to see a specialist, even privately. Plus, in any case I'd need him to write her a medical report which I'm sure he'll disagree with, too.
GP's arguments were:
1) Daughter's iron was 'within range' so there are no extra blood tests needed.
Use an iron supplement if I want.
When I asked how it was her iron levels were so low considering her excellent diet, he said again it was 'within range', so he didn't consider it low.
2) There was nothing wrong with daughter's thyroid because her haemoglobin health said she was fine.
He said symptom-wise it sounded like she was depressed, and he wanted to put her on anti-depressants!
Ironically, she's already prescribed fluoxetine by CAMHS ( which has hugely helped her cope with the anxiety around her ASD). I refused to increase the dose unless her thyroid was discounted and her iron increased.
He did agree to do the blood tests again to see if they were an anomaly, but he wouldn't add any further tests to the group.
I'm hugely frustrated because I can't even get her levels checked on Medichecks as she's a child, and like all the other online phlebotomists they won't test anyone under 18! I feel totally caught in a Catch 22.
I just feel like yet another female being fobbed off with anti-depressants. How dare they, when the symptoms of depression also apply to hypothyroidism and low iron levels?!
My daughter's only 13 and I don't want her going through what I went through under various GPs for so many years, being discounted because 'levels were normal' on blood tests, when it's obvious there's more going on.
I am hugely disappointed on your/your daughter's behalf. I cannot understand, but not surprised, why the GP can't see that a ferritin level of 20 with a range of 10-204 (5.15% thrugh the range) is anything but low.
To say just buy an over the counter supplement is sheer laziness and negligence, what if your daughter has a decent serum iron level and the supplement takes that level too high! Stupid, just stupid.
I can't understand why he has refused a referral to a private specialist. This is on the NHS website:
No. You can get private treatment from a consultant or specialist without being referred by your GP.
So if you can find a private specialist you could ask if he will see you without a referral.
2) There was nothing wrong with daughter's thyroid because her haemoglobin health said she was fine.
As far as I understand it, haemoglobin is to do with blood, can suggest if there is anaemia, it is not a marker of thyroid health. If that's what this GP thinks then it really puts him in the "ignorant/stupid" category.
He said symptom-wise it sounded like she was depressed, and he wanted to put her on anti-depressants!
Ironically, she's already prescribed fluoxetine by CAMHS ( which has hugely helped her cope with the anxiety around her ASD). I refused to increase the dose unless her thyroid was discounted and her iron increased.
I'm with you there, it's too easy for them to blame everything on depression, it's lazy doctoring, they can't be bothered to investigate any further because it might show up how ignorant they are.
I'm hugely frustrated because I can't even get her levels checked on Medichecks as she's a child, and like all the other online phlebotomists they won't test anyone under 18!
Blue Horizon will do tests for under-18s. They also do an iron status profile which says
This blood test provides four measurements of iron storage - if there is anything out of range, our doctors can look at how the levels compare and suggest a course of action. This test is available as a finger prick...
It has to reach the lab the next day so you'd need to send by Royal Mail's Special Delivery, and you need to fast for 12 hours before this test, sips of water are allowed.
Thank you so much SeasideSusie for your prompt reply, which I read as it came in that day and really needed to hear – in more ways than one!
I actually ended up seeing the GP (the guy I'd spoken to on the phone that morning) with my daughter later that same afternoon - after your response, which as I said came perfectly timed. My daughter had come down with cellulitis, had a fever and needed strong antibiotics. She’s much better now, thankfully.
I took the opportunity of a face-to-face with the GP and reiterated everything you said in both your replies - this time in person - adding that my husband and I were still pushing for additional blood tests and a private referral to the Paediatric Enterologist. I was brushed off again.
As a result, I came home from the surgery so upset and angry I had to take a step back from it all. It's like seeing my own experience rehashed in front of my eyes, but with my thirteen-year-old daughter who frankly deserves far better treatment – especially when she is unwell and has the dodgy blood tests to prove it. Plus, what difference does it make to him if he writes a referral for our daughter?!
I had such a strong emotional reaction to the experience, and was so livid, I had to take a step back and not think about the whole thing for nearly a week. So, it's taken me 'til today - 6 days later - to address the whole issue once more.
Again, I can't thank you enough for your input. I can't imagine having to deal with all this without the knowledge of you guys on here.
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Thank you for telling me about Blue Horizons. I rang them today and they're only conducting kids' blood tests in central London (I'm in the Brighton area). From experience, our NHS Doctors' surgery won't take blood for a private test.
So, today's question to you is as follows:
1)For my daughter, which tests should I buy? Do I need to stretch to the Premium Gold or Premium Platinum, which use vacutainers and would necessitate a trip to the London clinic? *
3)Also, is there a discount if blood tests are bought through Thyroid UK/ British Thyroid Foundation, etc, like there is with Medichecks?
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*Obviously I’d do anything for my daughter, so that’s doable although we likely wouldn’t be able to get there until 11.30am + as the train tickets could be £prohibitive otherwise. Usually, I’d stay overnight at friends’ the night before, but obviously with social distancing that’s not an option at the moment. I need to look into early morning train fares.
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Just to clarify, AXA – which is my husband’s health insurance company through work – requires GP referrals for the private fee to be covered by insurance (other than seeing a physio, osteopath, etc, where you can self-refer). That’s why we need a referral from our GP.
The paediatric endocrinologist will also need my daughter’s Medical Records, which the GP will have to write up for us (we pay our NHS Doctors’ surgery for this ourselves). So, either way, our GP will have to be involved.
Similarly, we have restricted family insurance cover per person so would be paying daughter’s blood tests etc, ourselves to better use the insurance allowance we have (about 3 private appointments’ worth, I reckon).
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Currently, my plan is to get more thorough blood tests done for my daughter before going back to the GP with more evidence for her to see a Paediatric Enterologist (or not).
Plus, what difference does it make to him if he writes a referral for our daughter?!
It seems like your GP is being deliberately obtuse.
I think the problem here is that if you are referred to a specialist, and that specialist confirms that she has central hypthyroidism or iron deficiency or anything else that he has failed to recognise or even investigate, it makes him look bad/negligent and heaven forbid that we dent a doctor's ego.
1)For my daughter, which tests should I buy? Do I need to stretch to the Premium Gold or Premium Platinum, which use vacutainers and would necessitate a trip to the London clinic? *
The Premium Gold test covers all essential thyroid and vitamin tests and can be done by fingerprick.
"This test is available as a finger prick or vacutainer sample collection option." from
You don't need the reverse T3 test which is included in the Platinum test and has to be by venous blood draw.
2)And the iron status test, which is £79 and can be prick test or vacutainer:
If you are going to order that as well, make two separate orders. This is because if you order them both at the same time you may only get one return envelope and I certainly wouldn't want to be doing two fingerprick tests on the same day and I'm used to them! By ordering them separately you will have a return envelope for each kit and can do them on different days.
3)Also, is there a discount if blood tests are bought through Thyroid UK/ British Thyroid Foundation, etc, like there is with Medichecks?
According to that page on ThyroidUK's website if you use TUK30 you get 30% discount of "Premium" tests.
If your GP still wont do a referral for your daughter after more private tests then all I can suggest is that you find another, more sympathetic, GP.
If you decide to go for the fingerprick test, I have a list of tips which work well for me and I'll post them for you if you give me a shout. It might be difficult with a 13 year old, but you know your daughter and whether she would be up for it. It doesn't hurt, the lancet blade is very tiny and it's in and out of your finger in the blink of an eye. Not everyone can manage fingerprick tests so it's something you'll need to discuss and decide if it's for you/her.
This is how they're done (ignore the fact that it's Medichecks, the principle is the same).
Thank you SeasideSusie for your support, and for ThyroidUK's discount code for blood tests via Blue Horizons. Happily, it gave me 30% off the total amount, covering the Iron Status profile test as well.
Frustratingly, we won't have the money for the tests 'til payday at the end of the month. I'll be sure to buy them through separately - great idea. So, we'll get there eventually! And then we'll see what our daughter's results say.
In the meantime, if you wouldn't mind messaging me your tip list for the fingerprick test I'd appreciate it.
Thanks again for your input which has proved invaluable, as always.
and my tips I'll put on the forum as they'll be useful for anyone else considering one for the first time:
* Be well hydrated, drink plenty of water the day before, and before you do the test.
* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.
* Have a bowl full of hot water (as hot as hand can stand it), dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.
* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.
* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.
* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable
I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did
* Prick my finger as usual, at the same time try and make a very slight twist with the lancet (the blade retracts very quickly). I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.
If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.
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