Firstly, I'm so sorry to bore you all but I don't know who to turn to!
As some of you may be aware I received, about a month ago now, the results back from Lei's (my daughter) bloods stating her levels where yet again through the roof at 85.5 and to up her dosage to 150mg daily which I stupidly did. I didn't argue the point enough that I don't think she should be on that much and to be re-tested sooner instead I just asked for more items to be tested (because they only tested TSH and FT4 ) and so now nearly 6 weeks on her symptoms are coming at her full pelt and I really think I've let her down!! 😥
She's now experiencing dizziness to the point she can't stand up, headaches all day everyday, nausea, muscle twitching, fatigue but the worst is she said she can feel sharp stabbing pains all over, literally head to toe, through her muscles through her skin through her organs which are unbearable and she ends up tears! I've let her down so badly!! 😭
I'm taking her for her routine bloods on Monday and have her booked in the doctors with regards to these symptoms which to me sound like Fibromyalgia.
In my last post I said I would be getting a home testing kit for her but because shes under 18 it's not permitted so for now I have to rely on the resources available to her.
I'm so sorry for this stupid post but I don't know what to do to make this better! I know I've messed up! 😩
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Vanessa09
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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)
You then went on to say that her FT4 was 12.9 but you didn't have a range. Did you ever get hold of the range? Because that doesn't look very high, but depends on the range, of course.
The problem with the TSH is that there are things that can affect it. One of those things is biotin. Does she take any biotin in any form?
Of course, a doctor with any sense, seeing the TSH shoot up like that, would redo the test, because it's not normal. But, I long ago gave up expecting doctors to have any sense! But if your doctors didn't think about retesting, why should you? Not your fault.
I didn't argue the point enough that I don't think she should be on that much
Why don't you think she should be on that much levo? It's not an exceptionally high dose, so what makes you think it's too much for her?
She's now experiencing dizziness to the point she can't stand up, headaches all day everyday, nausea, muscle twitching, fatigue but the worst is she said she can feel sharp stabbing pains all over, literally head to toe, through her muscles through her skin through her organs which are unbearable and she ends up tears!
They do not sound like typical over-medication symptoms. If they were my symptoms, I'd want my B12 tested first off. And, the other nutrients: vit d, folate and ferritin. Has she had those tested? If she's been hypo all her life, she could very well have nutritional deficiencies, no matter how good her diet.
I'm taking her for her routine bloods on Monday and have her booked in the doctors with regards to these symptoms which to me sound like Fibromyalgia.
So, ask for an FT3 test. You probably won't get it, but you never know - he who asks for nothing often gets nothing! Doesn't hurt to ask. And, ask for the nutrient testing.
But, whatever you do, do not mention Fibromyalgia! They would probably jump at the chance to blame every thing on that, and there's no proof it even exists. Get a diagnosis of fibro on her records and she will never get any extra help, everything will be blamed on fibro. Insist on getting her thyroid treatment sorted before even considering anything else.
So, as I explained to you in your last post, as her legal guardian, you should get copies of her blood test results. But, don't ask the doctor - he'd probably prefer you didn't know! Ask the receptionist to print them out for you. That way, you'll get all the info, including ranges. Most important to know.
And, stop blaming yourself. It's hard enough to get proper treatment when it's us that's ill. Getting it for our kids is even harder - I've been labled an over-anxious mother many a time! Just keep it cool and insist calmly on the treatment you want for her. And, the first step is getting the testing, and copies of the results.
Hi Greygoose, how you put up with me I'll never know!! Lol
So her levels and ranges are:
TSH 85.8, range 0.27-4.2
T4 12.9, range 12-22
"Why don't you think she should be on that much levo? It's not an exceptionally high dose, so what makes you think it's too much for her?"
Hmm.. I think because the symptoms she's experiencing have suddenly become very full on which I don't think is a coincidence plus it seems a lot for a 15yr old.
I've requested FT3,B12 and there were a few other things on there too which apparently have been allowed 👍🏻😃 but we'll see on Monday!
"But, whatever you do, do not mention Fibromyalgia!"
Oh! I thought the 2 were linked!? Ok, I'll keep quiet then!!
Her FT4 is right at the bottom of the range, so she's very hypo. She really did need that increase in dose. And I really don't feel those symptoms are due to the increase. Did she have any of them before the increase?
Oh! I thought the 2 were linked!? Ok, I'll keep quiet then!!
We know about the link - that is to say that very often cases of fibro are due to under-treated hypo - but for the medical profession, they are very distinct and separate 'diseases'. Fibro is very often used as a 'dustbin diagnosis': dump the patient in it and forget them, because there's no cure or treatment for fibro - nor any tests to prove you have it! - so nothing more is expected of the doctor. His job is done. That would be really sad for a 15 year-old, so best not to mention it.
She's feeling like that because her thyroid hormone level has dropped. If her FT4, the storage hormone, is low, then the active hormone, T3, is also likely to be very low, and that will cause a lot of symptoms. She's a growing girl, and obviously her need for thyroid hormone is growing, too. She really does need that increase in dose.
My brother and niece have M.E. they have both been quite poorly for years. My sister says it is a made up disease and they feed off each other. Please tell me what is M.E. and are there different symptoms, my brother gets head aches and fatigue, My niece has trouble swallowing, so much so she would not go on honeymoon because of eating in hotels.
Thankyou, my brother is 67 and his daughter is 28 they have both been unwell for a long time. My brother seems ok at the moment, but he still gets bad head aches, his daughter has been unwell most of her life. It seems to be their lot. My sister and I have an under active throid, is there any connection to these illnesses?
Hi Vanessa, Blue Horizon allow you to order their test kits on behalf of someone else (I've done it). I think I read somewhere on here that they will test children. Would be worth giving them a ring to ask.
One drawback I can see would be that if you wanted to be able to show the results to a medical professional, you wouldn't be able to. Another is that you wouldn't know if the ranges varied according to age.
Blue Horizon will do testing for under-18s. You must order the test in your daughter's name and with her date of birth though, because for some blood tests there are different ranges for children and teenagers.
You should check what I've just said - BH may have a Chat option on their website which you could use as a quick way of getting the info you need during office hours.
If you haven't already done so you should register with any testing company you are interested in using. Then you will receive emails with info on special offers which are sometimes substantial. The BH offers tend to be quite random, so it isn't feasible to keep checking the website. It's a lot easier to check your email.
So I think we may have got to the bottom of these symptoms and I feel very silly but I think it may be flu/chest infection. I spoke with Lei today (she's been at her dads this week and off school for a couple of days) and she said she's not in as much pain, still feels dizzy though, headaches are coming and going now instead of being all day and when she coughs it's quite apparent she's simply unwell.
I'm so sorry I pestered you all with, in the grand scheme of things, nothing!
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