Hello, I am new to Health Unlocked & my first post & need some urgent advice as expecting to speak to my daughters consultant tomorrow...
My daughter has been experiencing a number of symptoms over the last 3-4 years, extreme fatigue, very tearful, all over body aches, cold, periods of being unwell with no obvious causes. She has had a number of blood tests recently, the latest results below.
Latest Results:
TSH 6.31 (range 0.27-4.2)
Free T4 14 (range 12-22)
TPO 1300+ (range 0-60)
Also low in Vitamin D & abnormal gastric cell antibodies (I haven’t got a print out yet & not sure if the precise number of exact name, apologies).
My daughter’s paediatrician has been in contact with specialists at Great Ormond Street Hospital, who have advised me today no treatment necessary & re-test In 6 weeks. I am not sure the point of these repeated blood tests, she has had 3 since June.
She is very symptomatic - extreme fatigue to the point of tears, all over body aches, cold. Given her blood tests surely a trial of Levothyroxine should be given? They have said that she is at an increased risk of thyroid disease but her results do not ‘necessarily’ indicate thyroid disease at this moment in time. The doctors just seem to look at the blood tests & not listen to symptoms at all.
Any advice? I have argued my point & the paediatrician will go back to the specialists to discuss symptoms & if any further action needed. I am starting to feel desperation as my daughters symptoms does impact on her on a daily basis.
Thank you.
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ruthl12
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If that is her first raised TSH result then it's normal to repeat the test after a couple of months or so because TSH can be raised due to non-thyroidal illness so they will want to rule this out.
However, it would seem that her very high TPO antibodies do seriously suggest autoimmune thyroid disease (Hashimoto's) but I suppose they have to follow protocol.
If her next TSH test comes back raised then you can push for her to be treated with Levo, using the following information if necessary (bearing in mind that I only assume it's the same for children as it is for adults):
Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist, says in his article in Pulse magazine (the magazine for doctors):
Question 2 asks:
I often see patients who have an elevated TSH but normal T4. How should I be managing them?
Answer:
The combination of a normal serum T4 and raised serum TSH is known as subclinical hypothyroidism. If measured, serum T3 will also be normal. Repeat thyroid function tests in 2 or 3 months in case the abnormality represents a resolving thyroiditis.
But if it persists then antibodies to thyroid peroxidase should be measured. If these are positive - indicative of underlying autoimmune thyroid disease - the patient should be considered to have the mildest form of hypothyroidism.
In the absence of symptoms, some would simply recommend annual thyroid function tests until serum TSH is over 10mU/l or symptoms such as tiredness and weight gain develop. But a more pragmatic approach is to recognise that the thyroid failure is likely to become worse and try to nip things in the bud rather than risk loss to follow up.
Treatment should be started with levothyroxine in a dose sufficient to restored serum TSH to the lower part of it's reference range. Levothyroxine in a dose of 75-100mcg daily will usually be enough.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 2 to show your doctor.
In the meantime, here is some general information about Hashi's, again bear in mind that this is not specifically targetted at children but is general information given to members here who are, in the main, adults:
Hashi's is where the immune system attacks the thyroid and gradually destroys it, this can cause fluctuations in symptoms and test results.
Most doctors dismiss antibodies as being of no importance and know little or nothing about Hashi's and how it affects the patient, test results and symptoms. You need to read, learn, understand and help yourself where Hashi's is concerned.
Some members have found that adopting a strict gluten free diet can help, although there is no guarantee.
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.
Hashi's and gut absorption problems tend to go hand in hand and can very often result in low nutrient levels or deficiencies and it's important to test
Thank you so much for this information. Very very helpful.
My daughter has had 1 prior raised TSH (above 5), on retest it had gone down to just under 5, this was enough for the GP to dismiss any further thyroid issue. On the 3rd test it was 6.31, I feel that this demonstrates a thyroid issue, especially paired with symptoms.
I think the over range, under range, over range TSH is due to Hashi's fluctuations and she should now be prescribed Levo. Persuading a doctor to do this might be tricky.
Had there ever been a time when FT4 has been below range with a raised TSH?
My daughter takes multi-vitamins with the highest recommended dose of Vit D, however the consultant said she could prescribe extra but hasn’t done so far yet. The Boots pharmacist & my local pharmacy didn’t have any other Vit D for children.
I am feeling very confused with what to do. There doesn’t seem to be much joined up thinking. The GP hasn’t been much help &’has just advised to wait to see what the paediatrician says.
What does the multivitamin contain? Can you link to it? They're generally not a good idea and if I can see what it contains I'll be able to explain why.
OK, that's perfect as I can see exactly what's in it.
First of all, doctors aren't taught anything about nutrition/vitamins so we've come to expect them to be ignorant about them.
Generally, multivitamins contain too little of anything to help low levels, tend to contain the cheapest and least absorbant of active ingredients, and also often contain things that should be tested first and only supplemented if found to be deficient.
Going through the list of ingredients in that supplement:
Vit D3 - 10mcg which is 400iu
The amount of D3 we take depends on our Vit D level when tested. She may need more than that.
Vitamin K
They are using the K1 form of Vitamin K. This is the blood clotting form of Vit K, the sort they give new born babies. When taking Vit D3 we need the K2 form of Vitamin K. This is because taking D3 aids absorption of calcium from food and K2 directs calcium to bones and teeth where it is needed and away from arterties and soft tissues where it can be deposited and cause problems.
Folic Acid
If we need to supplement for low folate levels, methylfolate is the recommended form and a good quality supplement will contain methylfolate not folic acid. Folic acid is synthetic and cheap, our body has to convert folic acid into folate.
Vitamin B12
They don't say what form of B12 is included. It's most likely Cyanocobalamin which is cheap, the recommended form is Methylcobalamin which, again, a good quality supplement would contain.
Calcium - 120mg
Calcium should not be supplemented unless tested and found to be deficient.
Iodine - 100mcg
Iodine definitely shouldn't be supplemented unless tested and found to be deficient. Iodine deficiency is rare in the UK and iodine is easily available from food - dairy products such as milk and yogurt are good sources of iodine, as are haddock and cod.
This supplement contains 100mcg iodine and the RDA for adults is 150mcg so this is a worrying amount regardless of anything else.
Iodine is not recommended when Hypothyroidism is present, and definitely not when Hashi's is present.
Iron
And the inclusion of iron means that the absorption of everything else will be affected. Iron should be taken 2 hours away from any other supplements.
Sorry to say that there really is only one place you should be putting that supplement and that's the bin.
These are the core vitamins that should be tested and addressed individually:
Vit D
B12
Folate
Ferritin
If Ferritin comes back low in range then a full blood count and iron panel need doing to see if there is iron deficiency anaemia.
I have been reading & reading about the condition I haven’t come across most of what has been said in this forum...
What you get on the forum is years and years of patient experience. Unless a doctor has hypothyroidism/Hashi's then they have no idea how we feel. They just go by what they are taught in med school and it's been said that in the whole time they are in med school just one afternoon is spent on the thyroid.
They are taught that the only result that matters is TSH (which is not a thyroid hormone, it's a signal from the pituitary that tells the thyroid to make hormone if it detects there's not enough) and have no concept that it's the actual thyroid hormones - FT4 and FT3 - that are important to how a patient feels and the key to them getting well.
They also tend to mostly think that antibodies aren't important and frequently misdiagnose Hashi's as overactive thyroid (Graves disease) and give the wrong treatment.
They very rarely understand that optimal nutrient levels are important for thyroid hormone to work properly.
Also, even endocrinologists aren't always much help, most are diabetes specialists and know little about the thyroid.
The replies you will get on the forum come from patients who have been let down by their doctors and have to learn to help themselves.
If you want to read a good book then look at "Your Thyroid and How to Keep It Healthy" by Dr Barry Durrant Peatfield.
As for the Hashi's, maybe take a look at thyroidpharmacist.com - Dr Izabella Wentz, who seems to be popular amongst some Hashi's patients here. I don't have Hashi's so can't comment much about it.
I can't really comment on nutritionists. We do see some posts on here that don't show them in a very good light, but that doesn't mean there aren't some good ones around.
I am blown away by how much I have learnt. Health unlocked was recommended to me via a hypothyroid Facebook group, I am so glad I posted.
I will have a read of the books suggested.
I think I have a plan of what to do next, but I will probably be back with more questions! Thank you so much for giving up your time to reply to me. I am so glad I found this forum.
I'm glad you found it too...it's a life saving site. Your poor daughter must be feeling dreadful, and at such a young age, but please don't worry, as you're in the right place to get the correct advice.
I would avoid gluten (it often helps) unless they intend to test for coeliac disease, in which case she will have to eat lots before the test.
Try and persuade them to check for PA, and T3 should always be tested along with TSH and T4. Many NHS labs won't even test for T3, which is ridiculous as it's the active, and therefore the most important one. You really need to see all the results together to effectively see what's going on. You have to fight for everything unfortunately, as they seem to have little knowledge of thyroid issues.
Learn all you can from here, post all results and ask loads of questions, however trivial they may seem...this will help you argue your 'case'.
If she has gut absorption issues, Better You do mouth sprays that are easily absorbed, and avoid the gut...I know they do a child's Vit D, 400IU (my granddaughter takes it) so that may help. Low Vit D can cause gut changes that prevent absorption of other nutrients, B12, etc., as I found out the hard way, through mine going very low...the sprays were life savers for me. Good luck with it all, I hope she feels better soon.
I would normally say never take Multivitamins, never take Multiminerals
It's important to only treat deficiencies. Then monitor with follow up repeat blood tests.
Try and get all print puts of all results asap.
She's your daughter and doing your best for her - has the Consultant seen all her blood test results ? As, so far, I'm getting the impression that the doctors are not doing what they should be for her. Internal communication problems / hick ups ???
I also understand that Biotin can have an affect on blood test results particularly Thyroid tests. I understand that it's recommended to stop taking Vitamin B Complex tablets at least a week before blood tests.
Was she taking the multivitamins when Vitamin D, B12 and Folate prior to the tests for these being done?
She been taking these multi vitamins for a while now, as advised by GP.
I feel that something isn’t right with the treatment she is getting from the doctors. I feel like I am having to make a nuisance of myself to get anything done. To get this referral to the paediatrician from the GP was difficult & we have had to wait 3.5 months for.
The consultants should have copies of previous blood tests as it was in the original GP referral letter.
If you don’t mind once I have copies of blood tests I will post on here... I am very interested in what advice you all can give. Thank you.
Yes, get all blood tests results & post on here inclouding dates of tests, full ranges and any comments added by the lab / doctor.
Was the GP aware of the low Vitamin D and the abnormal gastric cell antibodies results when he told you to get multivitamins?
Everything your daughter needs should be on prescription - and only what she actually needs due to deficiency findings.
Write a list of all you want to ask the Consultant. It's so easy to forget something under pressure. (I always do) .
If you can , phone the surgery before speaking to the Consultant and ask them to read out the B12 and Folate results, ranges and comments over the phone.
You can apply to the hospital by email or letter for copies of all records (not sure if legislation any different when applying for your child's records - can't think why it should be). They cannot charge now under legislation of 25 May 2018.
The Gp was aware of Vit D & was the one who told me to get multivitamins.
They haven’t checked for gastric cell antibodies before now.
When I speak to the consultant I will ask for another appointment urgently as it’s not fair to be doing all this over the phone. My daughter isn’t well & it is seems unreasonable & unkind to keep telling us wait & retest.
Think about asking for an Ultrasound scan of her Thyroid.
You asked earlier about whether or not you should see a Nutritionalist. I'm not sure if I would worry about that just now. Come back with all results in a new post there are some knowledgeable people on here who will guide you on supplementation & nutrition.
Have you mentioned constant throat pain to the Consultant. I'd keep adding to your list of her symptoms as you remember them - and keep insisting that the doctors read the list.
As she has gastric parietal cell anti-bodies - then it suggests Pernicious Anaemia - another auto-immune condition causing B12 Deficiency. There is a Forum for PA here on HU where you can learn more. Has her B12 been tested along with Folate ? Symptoms of Hashi's and PA can be similar and not uncommon to have both.
Sorry your daughter is poorly. Hope you get the treatment she deserves.
Her B12 & folate has been tested but I haven’t been given the results. I have just had 2 conversations over the phone with the consultant. She is saying that there are a number of abnormalities, indicating some autoimmune response going on. I will ask for a print out of all results to be posted to me when she calls again.
I don't know what the guidelines are for testing in children but it would be worth finding out or asking the specialist to give you a print out on the UK guidelines for treatment if thyroid disease in children. You could search NICE website guidelines. The ATA which are the American Thyroid association are sometimes more comprehensive than UK guidelines.
She is so pale, the doctors even take note of that. She eats pretty well & drinks Plenty of water. I thought fortified cereals were supposed to be good if no sugar 🤦♀️
As your daughter has been taking a multi-vit it could skew the B12 result so do not let anyone tell you her result is fine when she has been supplementing.
Just wanted to let you know that the consultant has agreed to prescribe 50mcg of Levothyroxine & vitamin D after further consultation with endocrinology & looking back at last blood tests. Follow up blood tests for PA, coeliac amongst others in 4-6 weeks.
Thanks for all the advice & support, I have learnt a lot & lots of further info for me to be reading! 👍🏻
Make sure that your daughter eats food containing gluten for about 6 weeks before the coeliac tests. It might make her feel awful but it is the only way of ensuring that the coeliac test is as accurate as possible.
Even if the test comes back negative she might still feel better without gluten, but wait until after testing for coeliac disease before giving it up. I can imagine it might be difficult for a nine year old to stick to a gluten-free diet. It's bad enough for adults who fully understand the whys and the wherefores.
Oh, another thing...
If/when your daughter experiments with going gluten-free she may feel deprived of treats that other kids get e.g. cake, biscuits and puddings. There are loads of gluten-free cookbooks available. My sister-in-law is a dedicated and skilled baker of gluten-free treats and puddings and they are usually delicious.
One thing to be aware of is that gluten is, to some extent, actually addictive. So when people give it up they can suffer various symptoms suggestive of withdrawal, e.g. headaches, bad mood, depression, anger, insomnia, feeling jittery. But all these symptoms wear off quite quickly. I got my first benefits of giving up gluten after five days and this seems to be a fairly normal length of time for it to take. I don't have coeliac disease, but I wouldn't go back to eating gluten now.
You could try to give up gluten quite slowly, rather than in a "big bang" way. I don't know if that would make things worse or better.
Several people have recommended joining Coeliac UK if you decide to go gluten-free and also decide to stick with it :
Testing positive for Gastric Parietal Cells is pretty conclusive for PA. Please check with the PAS Forum. People often have a negative result but still have PA. So ... having a positive result raises my concerns Also ensure a FBC - Full Blood Count is done - also Folate and Ferritin. Raised Homocysteine and MMA ( Methylmalonic Acid ) can point to B12 Deficiency in the cells where it is needed. Last two tests are not routinely done in the NHS.
Make sure she eats lots of bread, cakes any wheat products she likes between now and next test for the (Coeliac test).
On day of test (for Thyroid bloods) make sure to omit Levothyroxine, (take after test). Get earliest appoinment possible and have her fast, drinking water only.
That's great news ruthl12 ~ I hope you see improvements soon, and don't stop reading as it really helps to stay on top of these things yourself. Good luck with the upcoming tests, and let us all know how it's going👍
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