Hi. I'm actually enquiring here on behalf of my daughter (22). She has freezing cold hands and feet pretty much all of the time, although she doesn't appear to notice that they're cold. They are often very white, but can be blue, purple or very red. She also suffers from extremely bad anxiety and cycles through depression regularly. She has also had drastic mood swings and even a personality change and has a diagnosis of Asperger's. She has trouble concentrating and thinking about things, but this could, of course, be due to medication.
She is currently being treated with an antidepressant and antipsychotic for the mental conditions, but other than showing some side effects neither she nor us are seeing much improvement.
Because of her cold hands her GP had suggested we got her Thyroid checked, which was done, but the results were considered "normal". We understand that the NHS generally don't do a full Thyroid test.
We would like to at least rule out the possibility of a Thyroid problem and wondered about the effectiveness of the home test kits that are available. Simply, are they good enough? If our daughter has low T3 will this be picked up? If she is unable to convert T4 to T3 effectively, will this show up?
We just want to rule out any and all possibilities before her psychiatrist increases her medication again if the cause of her symptoms is actually something physical.
Thank you for any advice and support.
Written by
Beefee
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Welcome to our forum and I am sorry your daughter is unwell at present. It is not unusual to have hypothyroidism and remain undiagnosed. I shall give you a list of clinical symptoms shortly.
We have private labs which will do all of the tests your daughter needs. You must realise that doctors are not trained adequately or endocrinologists either (I believe) because in these 'modern' times they take no account of clinical symptoms and before blood tests were introduced that is how we were diagnosed i.e. by clinical symptoms and given a trial of thyroid hormones. (this would have been 'natural dessicated thyroid hormones from animals' gland') Nowadays it is a synthetic T4. We can be diagnosed with many things we don't have and remain undiagnosed for the thing we do have.
We have 3 or 4 labs who will do home pin-prick blood tests. Your daughter has to be well-hydrated a few days before so that blood draw will be easier - they are pin-prick tests. Blood draw shlould be at the earliest possible, fasting (she can drink water). If she was taking thyroid hormone replacements she'd allow a gap of 24 hous between last dose and test and take afterwards. If daughter is squeamish maybe surgery will do the blood draw for you. (I'm not sure).
We have had members on this forum who have been diagnosed with mental health issues when they have actually been hypo.
In other countries if our TSH is 3+ we will be diagnose. Whoever made the rules in the UK that TSH has to reach 10 I think may have had hypo themselves as it is ridiculous to not diagnose by symptoms too. If TSH is anywhere up to 10, we will be told we are 'normal'.
She needs:-
TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.
GP should test 12, Vit D, iron ferritin and folate (all of these vits/minerals should be optimum).
The problem in the UK (and I am sure who made up these guidelines could well have been hypo themselves) is that doctors have been told not to diagnose us as hypothyroidism until the TSH (thyroid stimulating Hormone) is 10. If we lived in other parts of the world we'd be diagnosed when it reaches 3+ with symptoms.
If thyroid antibodies are present - regardless of the TSH result - your daughter should be given a prescription as the condition would be an Autoimmune Thyroid Disease and the antibodies attack the thyroid gland and wax and wane.
Thyroid hormones are required in our millions, if not billions of T3 receptor cells in order for us to function normally. Our brain and heart need the most. It is not unusual to be or remain undiagnosed. I was and know how unwell one can be whilst being told there's nothing wrong - that's because they never did the basic test, i.e. TSH but all of the others are very important especially FT3 and FT4. Many people are given psychiatric diagnosis when the root problem has not been diagnosed due to inefficient testing.
From now on always get a print-out of blood test results, with the ranges. Ranges are important as labs differ and it makes it easier to comment. The most informative tests are FT4 - FT3 and antibodies.
The symptoms could be thyroid related. The pin prick blood draw is more successful for some than others .I managed it once but the companies give an alternative of using a private hospital nurse to take the blood.
If my daughter was suffering as yours is, I too, would look at all avenues, before getting having her prescribed numerous medications.
Until the root cause of her symptoms are found (and, yes, they could be due to chemical imbalance affecting her mental status, requiring psychiatric meds), something else may be missed, or overlooked.
We only have to read the experience of some members here, to know that poor overall assessment can, and does cause untold misery and harm to patients and their families.
I urge you to take the advice from experienced members here, get your daughter thoroughly tested, (even for lymes disease which also has horrific symptoms if not treated). Only then can you be sure your daughter is getting the correct treatment.
I am also wondering, what does your daughter believe is wrong with her?
I wish your daughter and your family a brighter, clearer future.
Continue being the great advocate you are, despite some medics getting annoyed about being challenged. Any medic worthy of their role, will welcome patients and families getting involved in caring for the patient... they are after all, their loved ones!
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