New person, question about daughter

[Dentalmum]

Hi, a friend recommended I look and post on this site regarding my daughter. She is 9.5 and started to be ill in January 19. After 3 weeks she was diagnosed with a Strep throat and had 2 courses of antibiotics which didnt do anything to her general health. Her energy levels were really low and she was tired and cold. The local Children's hospital have seen her and she has had so many blood tests. The last one in July, showed her still having a raised ESR, although Im not sure what this is but previously had been 25, 19 and 18. Over the summer and last few months her energy has improved a bit but her main complaint now is that she is cold. Her ear temp is between 34.8 and 35.5 and she is usually in 4-5 layers (reduced to 2 layers when it was 35/36 degrees outside). She has started doing some of her sporting activities again but is finding this makes her legs very tired.

She has been referred to the Rheumatology dept at the Children's hosp but I wondered what your thoughts would be. She has had TSH blood test which I believe was normal, also EBV, crohns, diabetes, fasting bloods etc which have all been normal apart from ESR (and poss CRP? which is also high).

Many thanks

[Cooper27]

Are you able to get a hold of a copy of your daughters test results? You can share them here, and people may be able to give some advice (make sure any personal information such as name, address and D.O.B. are hidden).

Normal TSH doesn't always mean optimal TSH. The ranges used in the UK are very broad when compared to other countries, so many are left with a lot of symptoms that are related to the thyroid, but just aren't considered bad enough to warrant treatment.

[greygoose]

'Normal' just means 'in-range', it doesn't actually mean it's normal. The ranges are usually too wide. And, just a TSH test doesn't tell you much. You can still be hypo with a low TSH - something doctors just can get their heads around!

I don't know what the situations is with private blood tests for children, in the UK - is it legal? I don't know. But, if you can get a private test done you'd get so much more information. What you need are:

TSH

FT4

FT3

TPO antibodies

Tg antibodies

vit d

vit B12

folate

ferritin

Details of private testing here:

thyroiduk.org/tuk/testing/p...

I think it's really worth getting this done, if you can. Even if she's not hypo now, it will give you a base-line for the future.

[Cooper27 in reply to greygoose]

The likes of Medichecks require you to be over 18 I think, but it may be possible to get them done through a private GP. I don't know how they would know though, if someone just didn't ask for GP feedback...

[greygoose in reply to Cooper27]

I'm afraid I don't know. I've never used private testing by Medichecks, or anyone else. But, in any case, the list of necessary blood tests still stands.

[SeasideSusie Remembering in reply to Cooper27]

Blue Horizon apparently will test children.

[greygoose in reply to SeasideSusie]

That's good to know.

[SeasideSusie Remembering]

ESR is a test that shows acute and chronic inflammation. It is non-specific so doesn't give the cause of the inflammation which could be infection, autoimmune disease, etc.

CRP, again, is an inflammation marker and again is non-specific.

As has been mentioned, post what results (with reference ranges) you have and try and get all the tests listed done.

[jimh111]

She could have what is called 'non-thyroidal illness' (NTI). This used to be called 'Euthyroid Sick Syndrome' (ESS). Basically it means that another illness lowers the stimulation from her hypothalamus by 'thyrotopin stimulating hormone' (TRH) leads to lower TSH levels (and TSH which is less active) leading to lower fT3 levels. fT3 is the active thyroid hormone. In short, her illness affects her thyroid system producing less active hormone. The reduced active hormone should drive the TSH up but it doesn't in this case.

Sorry if I've overloaded you with technical stuff. You need to have her TSH, fT3, fT4 measured. If it shows the fT3 is low it will confirm NTI. In this case the ideal solution is to fix her original problem and let her thyroid system pick up in time. However, this seems unlikely, in which case she would need thyroid hormone treatment, ideally liothyronine (L-T3). It is very difficult to get liothyronine prescribed because it is expensive in the UK (not anywhere else). The first thing is to get a copy of all her results and insist that they carry out a blood test for TSH, fT3, fT4 to see if she has NTI.

[Dentalmum]

thank you for all your comments, I didnt realise until today that there were more tests for thyroid other than TSH. Unfortunately I havent got her results but will try and get a copy of them. The latest letter just said that ESR and ASOT remained raised and Rheumatological and endocrine bloods all normal. We are seeing the rheumatology dept regarding her temperature on 30/9 and after that on the 13/11 with the paediatrician. I will take the list of further tests you have recommended to the first appt and see whether they are willing to do them for her on the NHS. thank you

[janeroar]

Hello

Gosh what a difficult time it must be for her and your family. Has your daughter had a stressful time recently that might have triggered this illness?

[Dentalmum in reply to janeroar]

No, all started early January with a sore throat, early Feb finally got swab and antibiotics and not fully recovered 8 months later. Temp this morning of 35.3.

Was reading up more on this site last night and this year she has massively reacted to mozzie bites too, swelling up 8-10cm around the bite. Read that this could be extra histamine from poorly functioning thyroid.

Am ringing hosp today to try and get all tests and results as also have completely lost track of what she has been tested for.

[JMo1]

My daughter became bed bound after a bout of strep throat. Blood tests for glandular fever were negative. She still had a sore throat and all the symptoms you mention above. They eventually did a throat swab which showed she had glandular fever . I have read that it can affect thyroid function. It took her a long time to fully recover. Does your daughter still get sore throats? I hope you get to the bottom of this for her.

[Flynzer in reply to JMo1]

I am convinced my thyroid disease stems from glandular fever which I have had three times in my life. It's interesting to read your comment.

[JMo1 in reply to Flynzer]

Yes, it is very interesting! I think it was in a book by Dr Neil Nathan who specialises in complex chronic illnesses. If you are still affected by unresolved symptoms I can look for the title?

[Flynzer in reply to JMo1]

Thanks so much, yes please.

[JMo1 in reply to Flynzer]

thyroidpharmacist.com/artic...

It was Dr Isabella Wentz. If the above link works, it will take you to the article.

[Flynzer in reply to JMo1]

Wow, I can relate. Always feel the virus is lying in wait. Thanks for taking the time to find the article for me. My glandular fever put me in bed for nearly 6 weeks each time. I felt I was going to die! The last time, I spent the last 2 weeks in hospital. Will read again and decide on a course of action.

[Batty1]

Erythrocyte sedimentation rate (ESR or sed rate) is a test that indirectly measures the degree of inflammation present in the body.