Daughter's symptoms worse and still no answers from NHS

Originally posted on here about 8 months ago looking for advice as I was worried that my daughter was hypothyroid but Dr advised latest results are normal, no surprise there then! As in my previous post, we have family history of thyroid issues, Mum is underactive and I was overactive and got radioactive iodine treatment now on 150mcg for underactive, although never been stable on thyroxine and suggested T3 plus synthetic T4 might be better or armour instead but always told to stay on levo.

My daughter has all the symptoms of being hypothyroid still and I’m getting worried. Extremely fatigued, always had irregular periods, extremely heavy some months then none for months on end, multiple aches and pains, numerous skin complaints and infections, breathlessness is worse, eye problems worse plus the mental/emotional fog of being hypo seem to be getting worse, weight seems to be increasing still, could go on and on. She’s now so depressed at the whole health issues and battles and seems to accept that this is how it will be and just given up trying to feel normal!! I’m determined to get to the bottom of this for my daughters sake. From my last post on here she had a referral to an Endo at the local hospital, who were good and sympathetic to her symptoms, and have run a battery of thyroid tests, but no confirmation of any results or treatment. I'm taking her to the doctors again on Monday for results from the Hospital as we have never heard from the doctors or hospital. I'm expecting the same speech from the doctors though as I've had for the last 12 months that her results are all normal even though from when she was first tested her TSH is higher each time but not above 5.0 and this seems to be the cut off where they would try thyroxine. They don’t seem interested in testing T3/4. Seems I’m fighting a losing battle, but won’t give up. Hopefully Monday may shed some answers and if not, I have from Louise Warvill from thyroid UK a list of preferred endo's that I may have to explore or even private to get some answer but unsure of the cost of this.

Fingers crossed I get some answers or better still some treatment!

3 Replies

  • Hi Jeanee, I'll have a look on your site, its certainly another issue to consider at the moment, thanks for the information.

  • You are right! your daughter's symptoms are pointing towards an underactive thyroid. TSH of 5 is too high; however, doctors continue to use the old scale of measurements. Ideally the upper range value should be < 2.5.

    The TSH is not the full picture and T3/T4 tests could be measured in blood tests and in 24 hrs urine tests.

    Having said that, as you probably know, for the conversion of T4 to T3 there are many factors involved and lots of minerals and vitamins are required. I would check her ferritin levels, B12, Folate; Vitamin D, B6 and B1, A; Zinc, magnesium, selenium and iodine. Any deficiency in one, more, or in all will inhibit the thyroid to function properly and it will certainly have an impact on other hormones. I hope this helps as a start.

  • Hi Melanie, its seems frustrating that if her TSH was higher (5 or above) they would treat her for hypothyroidism simply based on 1 level and not the many other factors that they should be considering. I'm hoping that the last set of results will above this so at least something can be done. Your are right that TSH is only a very tiny part of the problem as we know. I'll take the list of tests you listed and see what has been and what hasnt been done. Thanks for the information.

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