My daughter was diagnosed 8 years ago with ME. My mother my aunt and myself have underactive thyroid. I’m not totally convinced my daughter dosent have the same . I had to fight for years to get myself treated as my results we’re always within ‘range’.
We’ve had a useless appointment with an Endo and GPS that haven’t done optimal and complete blood tests. So we’ve done our own in the conditions recommended on this forum. Please could you look at them and tell me what you think.
I can see that some levels on the results need improvement. Can you tell me how we go about this please? What she should take, and when she should take them.
I can fill you in with symptom details if you need them.
It would be useful to know her symptoms. Her thyroid hormone levels are very good but sometimes there can be peripheral resistance to thyroid hormone which causes hypothyroidism. It’s worth giving detailed list of her physical and mental signs and symptoms.
Do you really think a TSH of 6.98 is good ?
Hi there, what’s your thoughts?
TSH is not a thyroid hormone but this TSH is OK as it is successfully stimulating sufficient T4 and good T3. Of course it is possible this elevated TSH is indicating a thyroid that is beginning to fail but this would not explain her profound symptoms.
The danger is we see evidence of minor thyroid failure and seize on it to explain what is a substantial illness. It may well be hypothyroidism but it is not explained by a lack of normal hormone levels. I’m trying to find a clue to the underlying problem. If it is related to thyroid hormone she will probably need abnormally high serum hormone to get well. Doctors will need a good reason to do this, especially in a child.
She’s now 23
OP’s daughter is not a child - she is 22 years old.
Thank you for your reply. Here’s a list of symptoms:Brain fog,
Depression
Hair loss
Weight gain
Migraines
Chronic allergies
Depression
Chronic fatigue
Insomnia
Muscle pains
Temperature fluctuations
Kidney stones
Possible Elos Danos syndrome
This is difficult it could be hypothyroidism, only a trial of thyroid hormone would rule it out. I had in mind a form of resistance to thyroid hormone caused by a mutation of a receptor gene but this is usually spotted in childhood and tends to come with ADHD. The danger is by focusing too much on thyroid other diagnoses are missed.
I would try to get a trial of thyroid hormone including some liothyronine with careful monitoring to ensure there isn’t over activity. She will either get better or develop hyperthyroid signs. Sadly I can’t think of any doctor who would be prepared to do this even though it is perfectly reasonable. It may not be hypothyroidism and if it isn’t it’s important to move on and try to find what it is. I’m afraid this is beyond my knowledge and I don’t want to bring in too much guesswork.
Possible EDS?
We have many autoimmune thyroid patients who have EDS
Very many of them discover they have undiagnosed gluten intolerance
Has she had coeliac blood test done yet
Request or organise coeliac blood test BEFORE considering trial on strictly gluten free diet
Kidney stones
Has she had parathyroid levels tested
parathyroid.com/kidney-ston...
Important to test calcium and vitamin D at same time as parathyroid
Has to be done at hospital phlebotomy dept as needs immediate processing
hyperparathyroidmd.com/kidn...
parathyroid.com/parathyroid...
Calcium pro app
Add her test data and it will analyse results
calciumpro.com
Thank you
Another possible cause of hypothyroidism with normal blood tests is peripheral resistance to thyroid hormone caused by endocrine disrupting chemicals (EDCs). I suffered from this. There are household chemicals that imitate thyroid hormone and disrupt the binding of T3 to receptors. It's a detailed subject which I cover here ibshypo.com/index.php/acqui... .
I would suggest a three month trial of simeticone. Simeticone is an over the counter remedy for 'trapped wind', I doubt it works but it is cheap, safe and available at all chemists. Simeticone contains polydimethylsiloxane which by chance is the substance used to trap EDCs when measuring their levels in the environment. I would suggest you get her to try this before any thyroid hormone. Also, if she has furniture made before 2005 (when toxic flame retardants were used) she should remove it if possible.