Hi guys,
My daughters levels have gone through the roof again with her TSH at 85.5 (sorry, I haven't got the others to hand currently)
Does this mean that she's now hyper until they come back down again? (Which is taking forever btw)
Even after 15 years it still confuses me!!
Thanks
Vanessa xx
No it means she extremely hypothyroid, underactive. The pituitary is pushing out ever increasing amounts of thyroid stimulating hormone (TSH) to try and prod the thyroid to produce more hormones. The numbers for her actual thyroid hormones ft3 and ft4 will be low. I am surprised if she can function with those levels, she needs to be extremely careful not to over exert herself and most importantly not make any important decisions as she may well be cognitively impaired until her levels improve.
When you advise to not over exert, what might happen if she does and how much is too much exertion? Thank you.
She takes Levo?
She takes it regularly?
Does she have Hashimoto's (testing thyroid antibodies should show this, raised antibodies - TPO/Tg - suggest Hashi's. If she's never had them tested then she should - Thyroid Peroxidase (TPO) and Thyroglobulin (Tg).
I'm surprised too however she says she feels fine and functioning well.
Yup, as of today she's on 150mg of Levo and yes takes in the morning everyday. She has congenital hypothyroidism, assuming hashimoto's cant be present if there is no thyroid gland?
Yes this would normally indicate that she is extremely hypothyroid. However, this is a more unusual case so I think you need to get her FT4 and FT3 levels to take a better look - especially if she's feeling well 
Do you know for sure that she doesn't have a thyroid at all? Congenital doesn't always mean there is no gland at all.
I've just got home, so the letter reads "...TSH levels are 85.8 and free T4 is 12.9..."
No, I don't know for certain to be honest, this is what I was told from the heel prick, that her levels were so high that it indicates there isn't one there. Sorry, I'm so dim at all this!!
So if she does have a present but inactive thyroid gland, does this mean she can still get hashimoto's?
I wouldn't thinks so. I've, never heard of such a case. But, even if she did, it wouldn't make any difference. If the thyroid isn't making any hormone, the levels can't vary because of hormone leeching from the thyroid itself.
TSH is a pituitary hormone. When the pituitary senses that they're not enough thyroid hormone in the blood, it produces more and more TSH - Thyroid Stimulating Hormone - to stimulate the thyroid to make more hormone. So, in principle, the less thyroid hormone there is, the higher the TSH.
So, her TSH at present is 85.8. And you say her FT4 is 12. Do you have a range for that FT4, please? Ranges vary from lab to lab, so we always need the range that was used to analyse that blood. 12 could be right at the bottom of the range, or it could be somewhere in the middle - or even over the top of the range. So we do need that range to interpret it.
Now, assuming 12 is the bottom of the range, one would expect the TSH to be high. But, not quite that high. So, that leads one to wonder if there's been a mistake.
You say 'as of today she's taking 150 mcg', right? So, presumably, she was taking 125 mcg when these labs were done. Do you have her last TSH level on 125 mcg?
Sometimes, the TSH test becomes contaminated with antibodies - not Hashi's or Grave's antibodies, special antibodies that affect TSH. So, on seeing a TSH that high, and an FT4 not that low, the next step, before increasing the dose, should be a new test in a different lab, using a different method for analysis. I take it her doctor didn't suggest that? Might be a good idea to suggest it to him.
Does she take any supplements, like biotin or a B complex? If so, did she stop it a week before the blood draw? If she does and she didn't, that could have affected the TSH test, giving a false high result.
So, that's two questions that need answering before going any further.
Hi,
No I haven't been given the ranges. I'm going to call her pediatricians secretary on Friday to try and get some answers because something is clearly not right.
Yes, she was on 125mg 4 days and 150mg 3 days and no, I don't know her last results. I never do, they never tell me, they just tell me if her dosage needs to go up or down. I can only assume they were ok because she's been on that dosage for ages!
She takes vitamin D supplements. About 2 years a go we had a similar situation but the TSH was even higher! I had the doctor calling me on a sunday panicking and telling me she's on the verge of a coma but same thing again, she was functioning perfectly fine! Anyway, apparently from that result her vitamin D was also messed up so from then now has to take that supplement.
And no, never been told that she needs to stop taking it a week prior.
Thank you xx
Your daughter is 15, right? So, you are her legal guardian. Therefore, it is your legal right to have a print-out of her results, with the ranges. I would suggest you ask for this at reception. It is important that you know exactly what was tested and exactly what the results are. But, don't wait for a doctor to just give them to you. Because they won't. Most doctors would prefer you didn't know. Others will just assume that as you are a mere patient - or patient's mother - you're not capable of understanding them - probably why they didn't give you the range with that result. But you are capable of understanding them - we'll help with that - and you do need to learn about your daughter's disease.
she was on 125mg 4 days and 150mg 3 days I can only assume they were ok because she's been on that dosage for ages!
OK, so that indicates that there is something wrong with the test, not with your daughter! I made a suggestion what might have gone wrong, and the solution, above.
And no, never been told that she needs to stop taking it a week prior.
No, I wasn't talking about vit D, I was talking about biotin, one of the B vitamins, which can skew results. But, if she doesn't take it, then that's not the answer. There's no problem with vit D, so she doesn't need to stop that.
Has she had her other nutrients tested: vit B12, folate, ferritin? If not, it might be a good idea, they could also be low.
As she's taking vit D, did they also tell her she needs to take the co-factors vit K2-MK7 and magnesium? They should be taken with vit D.
Abit late but I'll start asking for these from now on!
Thank you. I thought I knew enough but I clearly do not know anything!
No of course I've never been told about K2-MK7 or magnesium. Blummin doctors!! Do they help with absorption or something?
Better late than never!
When you take vit D, it increases the absorption of calcium from food. So, you need the vit K2-MK7 to make sure the extra calcium goes into the teeth and bones, and doesn't build up in the soft tissues. And the magnesium is because vit D and magnesium work together.
Doctors don't know anything much about nutrients. They don't learn about them in med school. For a doctor to have prescribed vit D for your daughter, it must have been under-range. But, that's not surprising as she's been hypo all her life. The question is: is he now keeping a close eye on her levels?
So I’ve read through all the replies and your replies. I’m so glad you’re here getting advise, that’s the best way forward for your daughter - a mum who’s well informed. Please don’t let your Doc dictate how you’re daughters condition is managed. When on Levothyroxine TSH is pretty useless as an indicator of health. Like you said she isn’t on the floor unable to move or in a coma! So that gives you some indication at just how’s useless the TSH test is. Please insist on FT3 and FT4, Vit D, ferritin, folate and Active B12 tests from now on. And ALWAYS ask for the range for each test as the range differs from lab to lab.
Does your daughter take Vit K alongside the Vit D? This helps the calcium get to the bones.
I feel completely useless! She's 15 and as it turns out i know nothing about my own daughters condition 😔
Thank you for your advice, I'll get these requested.
Nope, never been advised to
She complains that her legs hurt, to the point of tears, a lot which has always been put down to vitamin D deficiency but now I'm not so sure!!
No, you're not useless, don't beat yourself up like that. It's just unfortunate that your daughter has a disease doctors know little about. If is were a heart condition or diabetes, you would be able to trust them, but they just don't have the education to sort out thyroid problems like this. Which is why forums like this exist - and there are a lot of thyroid forums, all over the world!
Now that you've found this forum, you are going to learn all about it, and how to be your daughter's advocate.
It could very well be the low vit d that is causing her leg pains. But, if she hasn't been taking magnesium with it, the vit D she's taking might not be working as well as it could. What is it that hurts? The bones, the muscles or the skin? Or the knee joints? When was her vit d last tested?
And, it's vit K2-MK7 she needs, not vit K1. That's something different.
Thank you. I've been on here for ages and should've used this a lot more before now!
She says it's the bone that hurts..possibly growing pains maybe? Would be a massive coincidence I suppose.
Vit D was done on the test before this one, again no results given.
Well, ask for them when you ask for all her other results.
I expect it is low vit D - and possibly low magnesium - that is causing the leg pain. But, she really should have the other nutrients tested.
Thank you all. You've all been so helpful!!! 😊 can I assume that if a patient requests to have these additional tests done they can't be refused? Ie will I end up having to go privately. Just so I'm forewarned really
No, I'm afraid you cannot assume that. The NHS is very mean it what test it considers necessary and will rarely test the FT3. The nutrient tests depend on how necessary the individual GPs considers them to be - and very often they consider them totally useless. But, basically, it all comes down to cost.
But, you don't have to see a private doctor to get private blood tests. You can get the blood tests without any doctor's say-so if you pay. You'll find details of private testing here:
thyroiduk.org/tuk/testing/p...
Also, if you have a look around this site, you will find a lot of information about thyroid disease and how to treat it.
Very well said greygoose! Vanessa09 you really can’t berate yourself for label of knowledge about your daughters condition. We are all raised to believe that those who’ve studied know best and we’ve all come from a place of ignorance. You sound like an awesome mum who is going to be the best advocate. There is so much progress to be made once one takes charge. The NHS and even the private Dr’s individually or even collectively don’t have as much knowledge or sense as the members of this forum!!
Thank you, that's very sweet of you to say. I said exactly the same thing to her that for all these years I've just accepted what I am being told because why wouldn't I trust the doctor, right?! However, this last result has really got me thinking and as all of you have confirmed something is not right at all with it. With her levels reportedly being as high as that she would be seriously unwell and she's not at all so no, I'm not going to accept it and I'm going to do my homework this weekend! Expect a lot of questions! 😉 lol
Just another thing to add, it's so difficult to truly understand how she is supposed to be feeling. She's a teenager going through lots of changes, she has her own personality, she has had this since birth so obviously changes frequently with growth spurts etc so it's hard to pin down is she acting/feeling a certain way because of the thyroid or because she's a teen or is it just her!
On the subject of biotin possibly making blood test results unreliable, see this thread :
Ok so just spoke to the secretary and asked for her ranges:
TSH 85.8, range 0.27-4.2
T4 12.9, range 12-22
These were the only 2 things tested. T3 won't be tested unless something abnormal comes back from results(???)
I told her I think the test is wrong so she said she'll get the peadatrican to call me when he's back in the mean time, can someone shed some light on what these current results mean please?
Sorry, I just can't get my head around it all!!
Thank you
Hypo/hyper? 
Hyper to hypo
hypo/hyper
