Insisted on a 2nd Thyroid test - what do the results mean?!

[DadandDaughter]

Hi Everyone

My 21 year old daughter suffers with a long list of symptoms associated with hypothyroidism:

Freezing cold hands and feet.

Hair falling out (bald patches on outer eyebrow)

Achy bones

No energy - daily naps

Insomnia

Depression & anxiety (said she really wants to be happy, but is always sad)

And lots of others....................

I was diagnosed with it when I was in my early 20s (I am her dad, so male).

She was tested for it about a month ago - but they only tested her THS which was 1.8, and said no treatment needed. In the latest test it is 2.4, full results attached.

Luckily we managed to persuade the doctors to retest with T3 & T4 and other things - here are the results.

Everything has come back within range - except her B12:

B12: 177ng/L - they say range should between 197 - 771.

Serum Folate: 4.1 ug/L (range 3.89 - 26.8)

Serum C reactive protein level: 1mg/L (range 0 - 10)

Serum Ferritin 39 ug/L (range 13 - 200)

She is a strict vegetarian - so not sure if that is linked to B12 ?

I have attached the T3 & T4 results.

Advice needed - looking at the results, does it look like she hasn't got hypothyroidism? Or is it still possible?

Any advice great appreciated.

Concerned Dad!

[MiniMum97]

Her B12 is low - this could be her vegetarian diet or because she has pernicious anaemia which is another autoimmune disease. Please go to the pernicious anaemia forum on Heaith Unlocked for further advice but she probably needs further testing and she shouldn’t supplement b12 until this is done as I understand it can skew results. Low b12 can cause lots of symptoms similar to hypothyroidism. It can also cause neurological damage which can be permanent if left untreated so it’s important she gets correct treatment.

Her ferritin is also a bit low. Has she been tested for anaemia? The low ferritin can cause symptoms without anaemia (see link below) incl some of the symptoms you mention. It should be mid range. Low iron can also be caused by a vegetarian diet as it’s difficult to absorb iron from non meat sources. Menstruating women need a lot of iron. She should try taking ferrous fumerate with 1000mg vit c (to aid absorption and reduce constipation). I can’t remember the amount of iron but I am sure someone will be along shortly to confirm amounts.

I don’t think her results indicate hypothyroidism at the moment but TSH has gone up so probably needs keeping an eye on. She also needs her thyroglobulin antibodies tested as these may be raised (confirming Hashimoto’s) even if TPO are not.

[SeasideSusie Remembering]

DadandDaughter

FT4: 18.6 (12-22)

This is good - 86% through range

FT3: 5 (4-6.8)

This is low - 35% through range

Because we're not tested for a baseline when we're fit and well, no-one knows where our "normal" levels are. These results might be normal for your daughter, in a treated hypo patient one would generally feel best when F4 and FT3 are in balance in the upper part of the range. Her low FT3 might be a sign of poor conversion of T4 to T3 and causing symptoms.

THS which was 1.8. In the latest test it is 2.4 (0.3-4.2)

I'm assuming the range is the same for both tests.

Was the latest test done by 9am at the latest and fasting overnight (water only)? If so this could be the reason for the higher TSH. It's possible that her thyroid is starting to struggle but diagnosis isn't made in the UK until TSH reaches 10. Occasionally a TSH of between 4-10 with a low FT4 and hypo symptoms will be regarded as Subclinical Hypothyroidism and some doctors may agree to a trial of Levo.

B12: 177ng/L - they say range should between 197 - 771

This is obviously below range and requires further testing for B12 deficiency/Pernicious Anaemia so she should ask her GP to do this.

She should check for signs of B12 deficiency here b12deficiency.info/signs-an... and if she has any she should list them to show her GP when asking for further testing. Doctors should go by symptoms, not numbers.

I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And 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."

NG/L is the same as PG/ML.

Serum Folate: 4.1 ug/L (range 3.89 - 26.8)

Folate and B12 work together. This is very low. Not technically folate deficiency but folate should be at least half way through range. Another thing her GP should take into consideration when investigating her B12.

She should not supplement either B12 nor folic acid/folate before further testing for B12 deficiency/pernicious anaemia has been carried out and B12 injections or supplementation started. Supplementing folic acid/folate masks B12 deficiency.

Serum C reactive protein level: 1mg/L (range 0 - 10)

This is fine

Serum Ferritin 39 ug/L (range 13 - 200)

This is low and can cause symptoms restartmed.com/low-ferritin/

I wouldn't suggest supplementing with iron tablets at this stage. Iron is complicated and ideally a full iron panel and full blood count should be carried out before considering iron tablets. If her serum iron is high then she wouldn't need iron tablets.

Normally it's suggested that to raise ferritin then eat liver/liver pate/black pudding, as she's vegetarian she will have to make the decision whether her principles come before considering her health problems. There are other iron rich foods which she can include in her diet apjcn.nhri.org.tw/server/in...

If she is prescribed iron tablets then each one should be taken with 1000mg Vit C to aid absorption and avoid constipation.

Did you not arrange one of the tests through a private lab as suggested - that would have tested Thyroglobulin antibodies as well as Thyroid Peroxidase, that would have completed the picture for autoimmune thyroid disease. You can be negative for TPO but positive for TG. It would have also included Vit D which, considering her other nutrient levels, is essential to test as that could very well be low too. She can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/ and if you order that today it should arrive by Tuesday/Wednesday and the results take 3-4 working days to arrive after the sample is posted off.

[HughH]

The fact that you and your daughter both appear to have thyroid problems points to a genetic condition, thyroid hormone resistance also known as impaired sensitivity to thyroid hormone. With this you need higher levels of t3 to feel well.

[StitchFairy in reply to HughH]

Sorry, I don't understand. The daughter's results don't indicate a thyroid problem, at this stage at least. But even if it was the case, why does father and daughter both having thyroid problems indicate thyroid hormone resistance? As is common for many people, my mother had a thyroid problem and so do I, but that doesn't mean thyroid hormone resistance.

[HughH in reply to StitchFairy]

The post stated "a long list of symptoms associated with hypothyroidism". The symptoms seem to be severe but the blood tests do not indicate hypothyroidism.

The main cause of hypothyroidism is Hashimoto’s disease, which is much more common in women than men. Although the disease often occurs in adolescent or young women, it more commonly appears between 30 and 50 years of age.

A possible explanation of the development at a young age and symptoms of hypothyroidism when blood tests do not indicate it, is thyroid hormone resistance. With it the thyroid blood tests can be high, normal or low. The condition is genetic so when close family members have thyroid or autoimmune conditions it could be that they have a genetic condition.

There is little or no awareness of the condition among doctors but it is actually common, just not diagnosed. Many hypothyroid sufferers have family members with serious health conditions such as heart disease, cancer, autoimmune conditions, women’s health issues, strokes, fibromyalgia, chronic fatigue and mental health issues. Doctors do not associate them with thyroid problems, but it is possible that the underlying cause is thyroid hormone resistance.

Dr Eugene Hertoghe was a Belgian physician who practiced in the early 20th century. He became vice-president of the Belgian Medical Society and one the world’s foremost thyroid experts. He recommended that "one must inquire carefully into the family history".

Dr Hertoghe stated in 1914:

“I wish to draw your attention to these social forms because they are very common, and because the exact knowledge of them enables us to grasp the cause and decide the successful treatment of a large number of illnesses or mental conditions for the occurrence and treatment of which we are otherwise unprepared.”

Dr Eugene Hertoghe gave the following advice for physicians:

“The slighter forms of thyroid inadequacy are almost invariably missed; yet, owing to their extreme prevalence, the recognition of these is particularly important”.