Worried: Hi everyone, Firstly, I'm so sorry to... - Thyroid UK

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Vanessa09 profile image
Vanessa09
โ€ข25 Replies

Hi everyone,

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!! ๐Ÿ˜ฅ

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!! ๐Ÿ˜ญ

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! ๐Ÿ˜ฉ

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Vanessa09
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greygoose profile image
greygoose

OK, no point in beating yourself up. :)

A month ago you wrote this:

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. :)

Vanessa09 profile image
Vanessa09โ€ข in reply togreygoose

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 ๐Ÿ‘๐Ÿป๐Ÿ˜ƒ 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!!

Thank you again xx

greygoose profile image
greygooseโ€ข in reply toVanessa09

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. :)

Vanessa09 profile image
Vanessa09โ€ข in reply togreygoose

No, we've only noticed the extremity of these symptoms over the past few weeks.

Ah ok, I won't mention it then. I'm so confused as to why she's feeling like this then! ๐Ÿค”

greygoose profile image
greygooseโ€ข in reply toVanessa09

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.

โ€ข in reply togreygoose

"Fibro is very often used as a 'dustbin diagnosis'"

Like ME, which also seems to have a connection with hypothyroidism.

greygoose profile image
greygooseโ€ข in reply to

Yes, ME, CFS and fibro, all very convenient for doctors, not for patients!

cazmania7 profile image
cazmania7โ€ข in reply togreygoose

Too true. They reckon I have CFS. Iโ€™m not convinced though!

greygoose profile image
greygooseโ€ข in reply tocazmania7

I wouldn't be, either.

Vanessa09 profile image
Vanessa09โ€ข in reply to

I've read this too. My partner has been diagnosed with ME/CFS being advised "there is no treatment" so yes, I agree this is also a dustbin diagnosis

greygoose profile image
greygooseโ€ข in reply toVanessa09

Which is why it's far better to avoid all conversation about it with your doctor.

san_ray70 profile image
san_ray70โ€ข in reply to

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.

Lora7again profile image
Lora7againโ€ข in reply tosan_ray70

Here is a link about it

nhs.uk/conditions/chronic-f...

san_ray70 profile image
san_ray70โ€ข in reply toLora7again

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?

Lora7again profile image
Lora7againโ€ข in reply tosan_ray70

There could be because thyroid disease can run in families. Have they had a blood test for thyroid function?

san_ray70 profile image
san_ray70โ€ข in reply toLora7again

I will ask my brother, I do not know. Thanks for responding. Lora

LyraBelasqua profile image
LyraBelasqua

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.

Vanessa09 profile image
Vanessa09โ€ข in reply toLyraBelasqua

That's great, thank you!

Gcart profile image
Gcartโ€ข in reply toLyraBelasqua

I might be wrong but if a kit is requested through BH for oneself surely the blood sent is in material? Test result achieved!

I know itโ€™s not truthful but I would do it for mine if I was worried

Vanessa09 profile image
Vanessa09โ€ข in reply toGcart

Well I did think this! I'm going to give Blue Horizon a call later though

LyraBelasqua profile image
LyraBelasquaโ€ข in reply toGcart

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.

Gcart profile image
Gcartโ€ข in reply toLyraBelasqua

๐Ÿงyouโ€™re right . As you say could be a problem , it could do only be for you to know unfortunately.

humanbean profile image
humanbean

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.

Vanessa09 profile image
Vanessa09

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!

LyraBelasqua profile image
LyraBelasquaโ€ข in reply toVanessa09

Glad she's feeling a bit better!

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