Update, New Results. Still Need Your Help for exhausted Daughter with normal TSH but low T4 Free and low T3 Free

[1eskimo]

My 30-year-old daughter has been struggling for an extended period with excessive sweating, frequent tonsillitis and bronchitis difficult to treat, waking up puffy, water retention, anxiety attacks, low stress tolerance, light sensitivity, brain fog, exhaustion, and weight gain, despite a strict gluten free and nearly lactose free diet. She also supplements with L-Tyrosine 1000, and most of the time a complex with 22 vitamins, minerals & antioxydants at half daily dose.

Doctors have attributed her symptoms to depression, since recent tests, including TSH, came back normal.

However, her condition has deteriorated, with severe pain in her left lymph node resembling a stiff neck and severely swollen tonsils that hinder her ability to swallow, and I believe her underlying health is the root cause.

Because I share a similar medical history of years of misdiagnosis, I finally found a practitioner who identified anti-thyroid antibodies, a shrunken thyroid lobe, and numerous nodules. Despite a normal TSH, treatment with NDT, T3, and a gluten-free diet significantly improved my health. My thyroid nearly returned to normal size, and nodules reduced. Currently, I manage my condition with minimal T3 (0,0625 mg and 2 x Metavive II (Porcine). It is also worth noting that there is a history of low cholesterol in our family, yet doctors don't seem to find this information very interesting.

Given my experience and the similarities in our symptoms, I had my daughter privately tested for Free T3, Free T4, and Vitamin D. These tests revealed very low T4 and T3 levels. Unfortunately, my trusted doctor has retired, and we anticipate her regular doctor will dismiss these low hormone levels, focusing solely on the normal TSH and potentially misdiagnosing her with depression or a simple sore throat.

Would you have an idea of additional tests for a proper diagnosis and whether medication could help ? Thanks ! (and sorry for my frenglish)

Her results :

T 4 Free 0,88 (0,93 - 1,70)

T 3 Free 3,14 (3,1 - 6,8)

TSH 0,72 ( 0,27 - 4,20)

VITAMINE D (D2+D3) 66 (30 - 60)

GLYCEMIE 0,96 (0,74 - 1,09)

CREATININEMIE 8,4. (5,1 - 9,5)

GLOMERULAR FILTRATION RATE (GFR) 85 ( > 90)

PROTEINE C REACTIVE (CRP) 8,1 (< 5,00)

FERRITINE 89 (15 - 150)

VITAMINE B12 SERIQUE 567 ( 197 - 771 )

CHOLESTEROL TOTAL 1,56

CHOLESTEROL HDL 0,73

CHOLESTEROL LDL 0,71

RAPPORT TOTAL/HDL 2,14 (< 5,00)

[1eskimo]

And I believe that SlowDragon and humanbean may have valuable insights to contribute to this conversation. I would like to tag you in this post to get your thoughts on this. Very thanks.

[SlowDragon Ambassador]

I will tag greygoose as she has experience of French medical system

Can you get an ultrasound scan of her thyroid organised

Vitamin D is 66ng/ml

That’s the equivalent of 164nmol

So she can reduce vitamin D supplements a little

[1eskimo in reply to SlowDragon]

Thanks ! Yes she stopped the vit D. I guess we could at least ask for an ultrasound.

[SlowDragon Ambassador in reply to 1eskimo]

Reduce dose, rather than stop vitamin D completely

[greygoose]

OK, well, the first thing to do is ditch the supplements she's taking. A multi-vit won't do her any good - for multiple reasons that I don't have time to go into here - and could be doing her harm.

Doctors have attributed her symptoms to depression, since recent tests, including TSH, came back normal.

Next time a doctor tells you that, remind them that depression is a symptom, not a disease. And is a very well-known symptom of hypothyroidism.

Also remind them that TSH is a pituitary hormone, not a thyroid hormone, and that trying to diagnose a thyroid problem by just looking at the TSH is like trying to fill the oil sump by putting petrol in your car! There's no connection.

Agreed that TSH - Thyroid Stimulating Hormone - is secreted by the pituitary when it senses that there's not enough thyroid hormone in the blood, and when thyroid hormone levels rise, the pituitary makes less TSH. But trying to diagnose a thyroid problem by using the TSH assumes that everybody's pituitary always works perfectly. And it doesn't. Some apparent thyroid problems are actually caused by a pituitary problem - or a hypothalamus problem - and not enough TSH is secreted to stimulate the thyroid to make enough hormone. The thyroid cannot make that hormone without the stimulation of the TSH.

So, the TSH level should correspond to the levels of the thyroid hormones - T4 and T3. With your daughter, it doesn't. It should be much higher with those low levels. It would therefore appear that your daughter has a pituitary/hypothalamus problem, what we call Central Hypo, and very, very few doctors know anything about that!

That is not the same as the problem you had. With a shrunken thyroid and high antibodies it would appear that you have Ord's Thyroiditis - commonly called Hashi's. However, the symptoms of hypothyroidism are the same whatever the cause, as is the treatment.

But why didn't you test her antibodies along with the other tests? Just in case she could have both problems at the same time.

Would you have an idea of additional tests for a proper diagnosis and whether medication could help ?

Well, the other tests that need doing are the other pituitary hormones, like HGH and ATCH, etc. I don't know if a GP can order those in France or if it has to be an endo, as in the UK. But one thing is sure, you would need a pituitary-friendly endo to interpret them because a GP wouldn't have a clue!

That said, your GP could order an 8 am serum cortisol test. That would give a clue, because the adrenals are controlled by the pituitary the same as the thyroid.

It is also worth noting that there is a history of low cholesterol in our family, yet doctors don't seem to find this information very interesting.

Of course they don't! lol They can't prescribe statins for low cholesterol. I have the same problem, and the last time my cholesterol was tested, the lab wrote on the bottom that it was 'dangerously low'. But the heart specialist I was seeing at the time said 'rubbish! Cholesterol can't be too low!' So there you have their attitude in a nutshell. And it can be too low, but I haven't a clue what you can do about it - and nobody else seems to know, either. It has nothing to do with diet because I eat a lot of butter, cream, cheese and eggs, but it stays low. And it's more likely to be a liver problem than a thyroid problem.

[1eskimo in reply to greygoose]

Ok I did not know that supplements were bad. I will tell her to stop it. I did ask her to do at least T3 and T4 and Vit D, because she was reluctant to ask something else than the prescription, and I thought it would interesting to see at least if there was a problem with it that would point to the thyroid. I think now she can try to have 8 am cortisol, and maybe antibodies tested by the doctor, but I doubt that the doctor will accept to prescribe HGH and ATCH tests, even if it is legal for them to do it. What arguments could we use to persuade her to do this, given that she (doc) may already be upset about the self-prescription of T3 and T4? I'm so sorry to see my daughter going the same sh...t than me with a string of doctors who will dismiss her as a neurotic hypochondria. At me they said they would not give something until I have a TSH superior to 10, even if I had gain 10 kgs in 10 days, was swollen and exhausted. And I know, that is crazy about cholesterol. We need it so much to make hormones etc. Anyway thanks a lot for your answer and the share of knowledge.

[greygoose in reply to 1eskimo]

I doubt that the doctor will accept to prescribe HGH and ATCH tests

That doesn't matter. As I said, she wouldn't understand the results, anyway. I doubt she knows what HGH and ATCH are, even. You need an endo.

What arguments could we use to persuade her to do this, given that she (doc) may already be upset about the self-prescription of T3 and T4?

You mean for yourself? You haven't started self-treating your daughter, have you?

[1eskimo in reply to greygoose]

No i did not treated her! I was talking about self-prescription of T3 & T4 blood tests.

[greygoose in reply to 1eskimo]

OK, It just wasn't very clear from what you wrote.

[1eskimo in reply to greygoose]

Sorry I’m French and not the best to expressing myself! 🐸

[humanbean]

Like greygoose I would suspect Central Hypothyroidism with your daughter's results.

The most common form of hypothyroidism and the one that doctors are familiar with is Primary Hypothyroidism. But when it comes to Central or Secondary or Tertiary Hypothyroidism most doctors don't have a clue. In fact if these are mentioned doctors will often dismiss it and say "It's very rare", and often won't believe that it could even apply to the person sitting in front of them.

Primary - caused by problems with the thyroid being unable to produce sufficient T4 and/or T3.

Secondary - caused by problems with the pituitary being unable to produce sufficient TSH, so the thyroid gets insufficient stimulation. Long term this can cause thyroid atrophy.

Tertiary - caused by problems with the hypothalamus being unable to produce TRH (Thyrotropin Releasing Hormone - Thyrotropin is another name for TSH), so the pituitary gets insufficient stimulation and produces too little TSH.

Central Hypothyroidism is the name given to Secondary or Tertiary Hypothyroidism when doctors don't know which one of these applies.

When a patient has undiagnosed Central Hypothyroidism they have too little TSH for their needs. Doctors look at their TSH and assume that the patient is "normal" if TSH is well in range, or if TSH is low in range or below range they start warning about the possibility of hyperthyroidism, when in fact the patient has low levels of T4 and T3 and is hypothyroid.

If someone with Central Hypothyroidism is wrongly treated as being hyperthyroid, which would entail blocking their production of thyroid hormones, the patient could go into Myxedema Coma, which is badly named because the patient is rarely completely comatose.

en.wikipedia.org/wiki/Myxed...

Some links on the subject of Central Hypothyroidism :

bestpractice.bmj.com/topics...

thyroidpatients.ca/2021/05/...

ncbi.nlm.nih.gov/pmc/articl...

endocrinologyadvisor.com/dd...

academic.oup.com/jcem/artic...

[1eskimo in reply to humanbean]

Thank you so much

[1eskimo]

Update, New Results. Still Need Your Help! greygoose , humanbean SlowDragon

Following your advices my daughter has managed to get a referral for new tests. Thanks to a cancellation, she has an appointment with an endocrinologist tomorrow. If you could help us optimize this appointment, it would be wonderful, as she is afraid of being dismissed as "all in her head" without further investigation into the cause of her problems. She is still exhausted, sleeping 16 hours a day, with swollen limbs and face, and minimal stress resistance.

Here are the results:

* ACTH (7:46 am): 9.5 (1.6-13.9)

* Sexual hormones : Note that after years of continuous birth control pills, she stopped but her periods have not returned for several months.

Estradiol: 26 (should be between 30.9 and 533 depending on the phase).

FSH: 5.1

LH: 5.1

* Cortisol (7:45 AM): 662.16 (166.09-507.66)

* FT4: 0.97 (0.92-1.68)

* FT3: 2.27 (2-4.40)

* TSH: 1.080 (0.4-4)

* GH: 0.30 (<3.30)

* IGF1 - Somatomedine C: 286 (91-293)

* C-reactive protein: 0.7 (<5)

* Prolactin: 5.1 (4.9-30.5)

* Anti-TG: 17.10 (<115)

* Anti-TPO: 19 (<34)

MRI of the hypothalamus and pituitary shows nothing.