BAFFLED BY TEST RESULTS!: Hi all, just got my... - Thyroid UK

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BAFFLED BY TEST RESULTS!

mysterio profile image
6 Replies

Hi all, just got my child's test results back today (24 hour urine test with Genova). Am baffled to say the least. It all appears "normal" despite her ongoing symptoms. Here's what they say:

T3 - Trilodothyronine (RIA) 1.78 (range 0.61 - 3.38)

T4 - Thyroxenne (RIA) 2.25 (range 1.03 -8.24)

T3:T4 Ratio 0.79 ratio

Any thoughts/comments gratefully received. I suppose I should really be relieved that it's come back as normal but there's still so many unanswered questions. I've obviously been barking up the wrong tree! Symptoms = extreme fatigue, thinning hair and eyebrows, constipation, heavy periods, pins and needles in hands and feet, very cold hands and feet, unexplained weight gain, extreme mood swings, etc. etc - all pointing to under active thyroid? Or not? Help! Many thanks everyone, Sheryl x

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SeasideSusie profile image
SeasideSusieRemembering

Can you add a picture of the test result graphic to your opening post (you click the downward arrow below your post V, click EDIT, scroll down to ADD A PHOTO, then click EDIT RESPONSE). I find it easier to try and interpret this test when I see the graphic.

Have you also had full thyroid blood tests done as suggested in previous posts?

Are you addressing the low Ferritin as mentioned in previous post?

Vit D needs testing.

Although B12 of 420 isn't dreadful, it's not really high enough. An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Sleepybunny profile image
Sleepybunny

Hi,

I normally post on PAS (Pernicious Anaemia Society) forum on HU. I am not medically trained.

Some of the symptoms you describe can also be found in B12 deficiency.

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

Lots more B12 info on PAS forum. May be worth starting a thread on PAS forum.

There is a paediatric version of "Could it be B12" book available

"Could It Be B12? Paediatric Edition: What Every Parent Needs to Know" by Sally M. Pacholok R.N. and Dr. Jeffrey J. Stuart

Two more B12 books I found useful

"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

Link about "Children and B12 deficiency"

b12deficiency.info/children...

Supplementing with B12 before diagnostic tests may make it very difficult to get a diagnosis.

Link about What to Do Next if B12 deficiency is suspected

b12deficiency.info/what-to-...

I hope you find answers soon.

diogenes profile image
diogenesRemembering

Perhaps this may throw some light on the problem - namely that T4 and T3 urine tests aren't reliable.

Ned Tijdschr Geneeskd. 2007 Dec 22;151(51):2813-5.

[Determining the thyroid hormones T3 and T4 in the urine: an unreliable test for hypothyroidism].

Wiersinga WM, Fliers E.

Abstract

A 24-year-old woman complained of tiredness, sensitivity to cold, and feelings of depression. A diagnosis of hypothyroidism based on decreased 24 h urinary T3 and T4 excretion was made, and she was treated with levothyroxin. No blood tests were done. She was referred with the question if she had other endocrine disorders. Her periods were regular, and on physical examination no abnormalities except slight acne were found. Similarly, hypothyroidism was diagnosed by decreased thyroid hormone excretion in 24 h urine, again without blood tests, in a 68-year-old woman whose mother had a goitre, and who had already been prescribed liothyronine. She had no complaints, and physical examination was unremarkable. The thyroid gland was not palpable. Thyroid peroxidase antibodies were absent in both patients. After discontinuation of medication with thyroid hormones they both remained euthyroid. It is concluded that thyroid disease did not exist in those 2 patients. Measurement of 24 h urinary T3 and T4 excretion is not an accurate diagnostic test for hypothyroidism.

SlowDragon profile image
SlowDragonAdministrator

This shows low FT4

No test for thyroid antibodies..

If antibodies are high, FT3 and FT4 can still be well within range, but you can still have many many symptoms

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies plus vitamins

Private tests are available

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

(don't take Levo in the 24 hours prior to test, and T3 12 hours prior to test, delay and take straight after.)

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's

jimh111 profile image
jimh111

Urinary tests are not much use, an approximate reflection of blood levels after the kidneys have done their bit. If a patient is taking T3 medication urinary T3 has the advantage of giving a 24 hour profile rather than having to carefully time a blood draw between two doses but it is still less accurate. This is reflected in the wide reference intervals the urine tests have.

Her Serum Ferritin normal no 23 ug/L 13.00 150.00 ug/L is a little low but I wouldn't have thought it would explain her symptoms (I have no expertise in iron metabolism).

I had severe hypothyroidism with perfect hormone levels which I put down to endocrine disruption causing peripheral resistance to thyroid hormone (far too much detail to go into). The pituitary has different receptors and handles thyroid hormones differently to other tissues, so there is the possibility of a disjoint between pituitary and peripheral response.

The only way to proceed is a trial of thyroid hormone, see if she starts to show signs of thyrotoxicity or whether she gets better. This is difficult with a child and would need to be initiated by a doctor. I would suggest she is referred to an endocrinologist who can carry out further tests such as measuing ankle reflexes and carry out a therapeutic trial of levothyroixine. If she does respond it is likely she will need high doses of thyroid hormone. It will be very difficult to persuade a doctor to adopt this approach but I don't see an alternative. Ultimately it is response to thyroid hormone treatment that is definitive, not blood or urine tests.

mysterio profile image
mysterio

A big thank you to everybody for their thoughts and comments - it's much appreciated. We now finally have an appointment with a paediatric endocrinologist at the end of June - a bit of a wait but c'est la vie. In the meantime, we went to a naturopath who, after taking a blood sample and analysing it under her microscope, suggested that there may be an adrenal crisis going on, of sorts. So now have started researching adrenal gland dysfunction - i.e. Addisons and Cushings - which appear to have very similar symptoms to under active thyroid. The plot thickens!! Maybe I'm being paranoid or a hypochondriac/over protective mother but we shall see what happens in June. I will keep you posted. Thank you very much again. x

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