Child's new Thyroid Bloods.

[Coastwalker]

Some TUK members might have probably read my posting before, so I do apologise about re-posting it yet again.

Child's Mother has asked me to put her Child's blood results up for other TUK members to kindly read please.

Free thyroxine 13.2 (9 - 24)

TSH 1.13 (0.2 - 4.5)

Iron 12.6 (10.0 - 28.0)

UIBC 47umol/L (No range given)

Iron Saturation 21 % (15 - 40)

No other bloods were done even though Parents did ask.

Child's Free T4 bloods keep coming back in the bottom third/or quarter, since way back in 2009

Yet young persons up to the age of 25 should have higher thyroid hormone levels than those over 25.

Back in 2009/10 the child had low, within range FT4 bloods along with TSH's of both 4.4 and 2.5 and borderline calcium (which was highlighted) and also a below range calcium. Also another blood to do with the liver was also below range, yet these bloods have not been queried or rechecked this time by medics.

Child has, (we think, but medics do not,) an adrenal problem, on the go symptoms all day,

(hyperactive or ADHD) has palpitations, insomnia, is always chattering, is impulsive, excitable, heavy handed and has quick weight gain in certain months only. The child is of an unusual tall strong build for their age, large head, wide neck, strong shoulders, large hands and feet. Yet keeps going hyper actively all day and evening, despite being on a low diet.

Parents have been accused of over feeding their child by Medics and been told to keep their child on a strict diet, which child has been on for a couple of years, but we are worried the strict diet for an on the go hyperactive child, might not be correct way forward for ever, as something will eventually give if it is adrenal connected, but Medics do not take adrenals seriously.

'Hormone Restoration.com' website mentions people who have low end of the laboratory reference range FT4/FT3 and a normal TSH, has by definition Central Hypothyroidism. Another Member who has been kindly helping us has also told us this.

Many thanks

[Clutter]

Coastwalker, were pituitary function tests done to check for pituitary dysfunction which is the usual cause of secondary hypothyroidism? NHS cortisol testing doesn't see grey areas between Addison's and Cushings. You can order a saliva cortisol test from Blue Horizon and Genova via thyroiduk.org.uk/tuk/testin...

[Coastwalker in reply to Clutter]

No pituitary was not done Clutter, Pediatrician thinks it is all down to obesity and two years ago got Social Services involved which has been really hard on the Family on top of hospital visits, dietician and Doctors appointments and the pediatrician pushing SS into believing child's Mum needed a mental test, really took it's toll on the family. Only when Parents went to see a solicitor for advice did things change, instead of sitting back and taking it all, they were told to take control and demand. They were too scared to take control and demand before as they were terrified their child might be taken away from them.

Social Services have now said in a phone call, the family have not been abusing their child and it is clear that the child has a medical problem. (unfortunately they do not put it down in writing.)

We know other tests were done, like diabetes, but not all results were sent through to us, it took two phone calls and weeks before results were sent to parents, we got the feeling they did not want us to see the results.

It took 6 hours instead of two to get the child's bloods because they could not find a vein, the child refused the last needle.

Parents asked for other bloods to be done, but they did not consider them.

Thanks for your good advice about NHS cortisol and grey areas Clutter,

Question:- Do you know if children are actually allowed to be tested for cortisol and blood tests through these postal services or would they query the fact it was a child's bloods you were asking to be tested, I would worry they might alert Social services without you knowing.

Thank you Clutter

[Clutter in reply to Coastwalker]

Coastwalker, I don't know whether there are any restrictions on parents ordering private tests for their children. I don't even know whether age is requested on the paperwork. I doubt a private company will contact social services should a parent request tests.

[Coastwalker in reply to Clutter]

Thanks Clutter, just came across a medical forum with a woman with similar bloods as child saying she too was hyperactive, but showing hypo bloods, was going to print it out, but 14 pages long, so just wrote down the long website titles. Again suggesting adrenals,pituitary, etc., she too is looking for a clever doctor. I have written back to her, she too has nowhere to turn and getting frustrated.

[Clutter in reply to Coastwalker]

Coastwalker, I really feel for every patient concerned for their child and not getting the help they need. I do hope you find answers.

[Coastwalker in reply to Clutter]

Clutter,

An extract I am going to copy out to give to the Pediatrician from Hormone Restoration.com reads:-

(Firstly it talks about the normal Hypothyroidism symptoms, most people get, then reads :- )

In some persons, the body reacts to thyroid insufficiency by producing excessive adrenaline, causing a different picture with anxiety, palpitations, insomnia and hyperactivity. There are even more symptoms that can be seen in persons due to their unique constitutions and their bodies attempts to compensate for the low thyroid levels.

[Clutter in reply to Coastwalker]

Coastwalker, make sure there is a link to the research article the extract was taken from. I hope it helps the child get a diagnosis.

[Coastwalker in reply to Clutter]

Thanks for your tip clutter, I've had it printed out for a long time and have taken copies from it and highlighted phrases. it is so spot on to the child.

Quite an interesting easy read and it says to click onto a link to see:-

'Why Doctors don't get it'

The weight gain and unusual strong build and size of our Grandchild is a mystery, our Family and a Bone Doctor thought it might be something else going on and we too had been worried about a tumor causing the quick weight gain (we still are,) but that was before we saw any blood results, it is still in the back of our minds as often during the child's growth period the child has put on as much weight as a pound and a half a week and when child and father was ill for two weeks with flu like symptoms, Father lost half a stone and the child lost no weight at all, despite both hardly eating.

We will get to the truth one day.

Child's own Doctor said to me, maybe what I had shown to him on my well sourced, studied and printed out bits of paper might come about in science one day ????

I did not like to tell the Doctor that It is all 'here,' 'now,' in science, that's why I've been able to copy it all out, I certainly did not make it up out of thin air.

We'll get there I am sure.

[Marz]

Think I mentioned Pituitary Function to you in one of our PM's - sorry I cannot comment on results as I am not familiar with ranges for children....

Do hope you soon get some helpful answers....

[Coastwalker in reply to Marz]

I remember Marz

Thanks for your support.

[sorrel89]

Hi again coastwalker! I have had similar difficulties...it is a minefield...No sign of any FT3 testing so were these tests sanctioned by a GP or paediatric endo?

Are there any previous blood test we can look at too?

Many thanks wishing you well

[Coastwalker]

Just a Pediatrician this time sorrel89,, but child has seen an out of area Endo Pediatrician, same diagnosis of obesity only, no FT3 was done, how stupid, they must know about FT3.

I think they have done minimum bloods only as Pediatrician is trying to prove it is only obesity (when we know full well it is not 'normal' obesity, at times child gains one and a half pounds a week, diet makes no difference.)

The Pediatrician was only interested in doing a diabetes test and some tests (or test) to show how bad the child's body build, growth and organ's will look like when child is 15, almost to prove that it is down to obesity only. Yet by putting child on a strict diet (they choose not to call it a diet) they might be doing harm to the child themselves by making the child store more fat. Lack of T4/T3 alters fat metabolism.

No calcium blood was re checked this time, despite GOSH flagging up it was 'borderline low' (actually under range,) both times. Also no gut issues or allergy tests done, though the Pediatrician said one had already been done.

Thyroid bloods done in 2009 stating 'Borderline' had higher TSH, but always T4 is showing in bottom quarter or third of the range. Shame they did not consider giving thyroid medication back then as many patients get given a trial when 'borderline.'

T4 11 (10.8 - 19)

TSH 4.4 <6

T4 12.9 (10.8 - 19)

TSH 2.5 <6

[sorrel89]

Oh dear Coastwalker, she needs to be referred to someone who know what they are doing, how about GOSH again? You need to access her medical notes and start putting pressure on these people through pals. You need confirmation on what has been looked at and what has not. Sounds abysmal to me and underhand. She needs to be seen by specialist paediatric endo not just a paediatrician and this should be insisted on. Suggest that you daughter starts emailing the doctors, that they cannot ignore. If your granddaughter is on a strict diet she should be having regular contact with some health professional. Dreadful...

Wishing you well...

[Coastwalker in reply to sorrel89]

Have kept all Hospital letters and bloods done, we were able to get our hands on, some recent tests have not been sent through for some reason. Child was past down from Gt Ormond onto Child Endocrine who thinks it's just obesity, (then down to Peditrician who thinks the same and who told me 'children don't get that sort of thing', when I asked about it might be down to thyroid, hoping to fob me off, probably, even my Daughter could not believe the Pediatrician said that. Yet no mention back to us from Ped that Borderline Thyroid was written on Childs Gt O St. letter so there could be a connection to a thyroid type problem. (or had they over looked these results.)

Dietitian did not know what aspartame in food is????

Daughter was told by another Mum that Ormond St. missed her Boy's bloods, and he went on to have inoperable tumors.

I am so not surprised things like this are going on since joining TUK and listening to other member's horror stories.

What is Pals please sorrel89 ?

[sorrel89]

Hi again,

Pals is this

nhs.uk/chq/Pages/1082.aspx?...

Not sure if you remember but I mentioned in previous post about the troubles of being heard. All 4 of my children are in the 'system' but I suppose medics have semi listened to my concerns due to my previous thyroid cancer, hashimoto's and strong familial history of thyroid disease but I have had to make some serious noise and I am still very unhappy with the outcomes regarding my children. They have been seen by Dr P and that may be one of your options but he needs all blood test results etc. Have you taken any body temperatures and what about orthostatic blood pressures? Sorry I do not rate many dietitians, I think nutritionists are far better. Is there a history of thyroid disease in the family? Does she have neck swelling or a goiter? You must demand all copies of tests...sorry.

Best wishes

[Coastwalker in reply to sorrel89]

Thank you, I will look into PALS a bit more Sorrel89, Yes I did think I'd spoken to you before.

Not sure about complaining about NHS as people say waste of time, save your energy, it just goes round in a circle.

Did I hear a new NHS complaint service was going to start up sometime ? maybe that complaint service will be far better as I heard it was not connected to the NHS.

Daughter has just received a letter from 'The System' yesterday, saying the child was being taken off their books, but added cruelly 'for the time being' so they will be waiting in the wings, yet again as before.

Parents and myself have all thought we can't wait till the poor child is 18 yrs old, wishing their life away, so there'll be no more cruelty from 'big broither'

We should feel happy about the child being taken off SS books, but instead we all feel, very, very angry that the Medics have involved the Social Services in the first place. for two whole years we have been on a knife edge thinking our child would be taken into care.

Child today shouted down the phone at me 'Nanny I've won,' I thought he meant at football, 'no I've won, we've got the letter saying we've won.' Mummy said we would win.'

How did you get on with DR. P ? and did you go through the PALS route yourself Sorrel89 ?

[sorrel89]

It was my eldest that was our priority at the time due to his awful fatigue following on from vaccinations and glandular fever. Dr P diagnosed low functioning adrenal glands through saliva and urine testing. My second son has been diagnosed with partial adrenal insufficiency by GOSH and Alder Hey but I think he has an underlying thyroid problem as levels are all over the place. My third has very low thyroid levels but her results are consistent and my 4th is just in the system. Yes I absolutely did take the pals route, it may have been a waste of time to some degree but at least people did sit up and take notice and the positive thing was they sanctioned more blood tests and decided to consent to B12 injections. Great to hear that the family is off the SS books what a relief.

[Coastwalker in reply to sorrel89]

Thank you for your children's story's Sorrel89, you have had an awful fight yourself by what I have read, how did your children cope with it all ?

Our Grandchild has been greatly affected by it all.

I will tell Daughter about this PALS.

Thanks.

[sorrel89]

The children are ok about all the testing but taking advice is another thing!! 3 of them are teenagers!!! I try not to mention too much or show my angst. My eldest is more troublesome with all the advice he has been given, he wants to do stuff his own way and all refuse to go gluten free. I backed all my correspondence to PALs with evidence/ facts B12 protocols etc it makes them take note! Best Wishes again

[Coastwalker in reply to sorrel89]

Many thanks sorrel89, interesting what you told me earlier about the adrenal testing as I did not think Medics took much notice of adrenals, so I am filing that to show my Daughter.

[sorrel89]

Both my boys had the Short synacthen test, my second son went onto have 24 hour cortisol blood testing so a day curve could be analysed. Just remind me again please is there thyroid disease in the family?

[Coastwalker]

Yes there is sorrel89.