11 year old with underactive thyroid, supposed normal results?

[suzeb0406]

My almost-12 year old was diagnosed with an underactive thyroid in Jan of this year and her bloods since then seem to show 50mg have helped levels settle. However she isn't well in herself and I obtained the most recent set of bloods to start educating myself. Given how she is feeling, I no longer believe what the consultant said about ' just take this tablet every day and you will be absolutely fine'. She hasn't had T3 tested at all. Given I don't feel we are being taken seriously, I am thinking of a private test so we can check T3, b12 and vitamin d ourselves before returning to the gp. These haven't been checked before. Can anyone give us advice/ suggest anything? I'll attach the blood results from a fortnight ago. Many thanks. Susan

[humanbean]

Is your daughter 11 or 22 ? I suspect a typo somewhere, either in the title or the text...

[shaws Administrator]

Your heading states '11 year old' and then almost 22? I am assuming your daughter is almost 22

It is very disappointing when we've put all our faith in the doctor/endo only to find that 'No' the person isn't improving and in fact she/he may appear much worse. Family members know the person inside out and it comes as a surprise that we have to look outside for information about the 'condition'.

50mcg is a starting dose and a blood test should have been taken every six to eight weeks with a 25mcg increment of levothyroxine until the patient feels much better.

First, all blood tests have to be at the earliest possible, fasting (she can drink water) and allow a gap of 24 hours between the last dose and the test and take it afterwards. The reason is that doctors only appear to go by the TSH alone and not the patients clinical symptoms (don't know any of them) and that doesn't always improve the patients' symptom. The TSH drops throughout the day and if test is done 2 p.m. it will be different than at 9 a.m.

Others will respond to the rest of the blood test results but a TSH of nearly 4 is not normal. Doctors/Endocrinologists are very confused about this 'normal range'. It should mean that this is only for an initial diagnosis and when patient is prescribed levothyroxine the aim is a TSH of 1 or lower. Not somewhere in the range.

Your daughter needs an increase in levothyroxine. She also needs Free T4, Free T3 and thyroid antibodies, B12, V it D, iron, Ferritin and folate. (GP should do vitamins/minerals) and we have recommended labs which will do the TSH, T4, T3, Free T4 and Free T3 and antibodies. Sometimes even if GP asks for the TSH, T4, T3, Free T4 and Free T3 and antibodies the lab may not do so as the guidelines state that only TSH and T4 are necessary. Not so. You have had a FT4 result so you don't need that.

Medichecks and Blue Horizon are popular home pin-prick tests so if you decide to do this follow the above procedure, ie. early morning etc.

thyroiduk.org.uk/tuk/testin...

Get a print-out of the results with the ranges and post on a new question.

thyroiduk.org.uk/tuk/about_...

Your daughter will have to read and learn about her condition and how best she can recover her health so that she is symptom-free.

[suzeb0406 in reply to shaws]

Thanks for this info. We'll proceed with the Blue Horizon tests - it is more complicated doing private tests for a child without a Gp letter apparently. No one - children's hospital nor GP had explained about fasting or leaving a gap between last dose and testing. Her antibodies have been checked before in the tests and were raised but not checked this time with these bloods. As far at the medics are concerned, she's normal - quoted yesterday: 'Whatever is causing the feeling of coldness and fatigue, it isn't the thyroid'.

[shaws Administrator in reply to suzeb0406]

I am not sure whether children's blood tests are equivalent to adult ones and hopefully someone will be along with information. I am sure Blue Horizon will be able to confirm about children/adults results.

This is a list of clinical symptoms and you, the mother, knows your daughter outside in. Don't be fobbed off as I was when my daughter was about the same age (Not thyroid related) which led to my daughter now being a disabled adult.

Doctors and endocrinologists appear to be the last people to know anything about clinical symptoms. This is from TUK and I should suspect that children/adults have similar symptoms.

thyroiduk.org.uk/tuk/about_...

This link I hope will be helpful:-

endocrineweb.com/conditions...

urmc.rochester.edu/encyclop...

[suzeb0406 in reply to shaws]

Thanks for the links. She's about to start high school and I really want us to get a handle on this.

[Clutter]

Suzeb0406,

Your daughter is undermedicated to have TSH 3.38. The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 0.35 - 1.0 with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email [e-mail] if you would like a copy of the Pulse article to show your GP.

Elevated thyroid peroxidase antibodies means your daughter was positive for autoimmune thyroid disease (Hashimoto's). NHS doesn't retest thyroid antibodies once they have been found positive.

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Levothyroxine treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

thyroiduk.org.uk/tuk/about_...

[suzeb0406 in reply to Clutter]

Thanks, we've started to look at reducing gluten in her diet. I will email Louise re the article you mention. There's a strong history on the maternal side of thyroid issues (both over and underactive) and I've got different autoimmune things going on so the diagnosis wasn't completely unexpected. However, what I didn't expect was the lack of understanding about how she's feeling from the doctors and nurses she's seen.

[Clutter in reply to suzeb0406]

Suzeb0406,

There's no point in reducing gluten. Even a trace of gluten can cause autoimmune response. G-f really is an all or nothing diet.

We really might just as well have machines reading results to us for all the understanding and empathy some medics display. Assuming mid-range TSH or TSH anywhere in range is good is a common error.

[suzeb0406 in reply to Clutter]

Good advice, re gluten.

[shaws Administrator in reply to suzeb0406]

It does come as a surprise about lack of knowledge and I believe that's all down to the modern method of blood tests only being used as a diagnosis without any knowledge whatsoever of clinical symptoms.

[spongecat in reply to shaws]

Precisely. A typical Little Britain-style "Computer says no".

Quite frankly suzeb0406 unless the doctor suffers from a condition themselves or a close family member, there is very little empathy either through ignorance or being tied down by the various opinions of Important Doctors With Big Bow Ties and Half-Moon Glasses societies who seem to make the rules.

Sadly he have to grasp the nettle ourselves to make ourselves better or our dependent loved ones and read up many learned articles to educate ourselves.

I wish your daughter all the best, she deserves doctors to listen to her and treat her for she is just starting that road to womanhood and all the ups and downs that entails without being scoffed at that there is nothing wrong with her thyroid and everything will be hunky-dory when you take the little pill.

The blood test will give you guidance as to what to do next.