mum of 19 year old who has hyperactive thyroid since 2014. has developed goitre and now eye tissue change. Feel overwhelmed as he keeps having thyroid storms but local hospital doesn't have resources to monitor closely. Don't know if all relevant tests been done but they are now advising surgery. would like to know other journeys/help/tests that should have been done/ideas for well respected experts in my area - Southend Essex
HIS RESULTS SO FAR ARE
28.4.14 TSH 0.01 T4 >100 T3 41.4
28.4.14 TSH 0.01 T4 >100 T3 41.6
8.5.14 TSH 0.01 T4 42.8 T3 13.5
27.5.14 TSH 0.01 T4 46.3 T3 14.9
7.8.14 TSH 0.01 T4 9.8 T3 4.2
1.9.14 TSH 5.01 T4 8.8 T3 4.4
14.10.14 TSH 9.75 T4 10.6 T3 5.4
19.12.14 TSH 18.11 T4 7.8 T3 5.7
16.2.15 TSH 32.77 T4 5.6 T3 5.4
16.4.15 TSH 2.66 T4 15.3 T3 6.3
15.7.15 TSH 0.01 T4 70.8 T3 25.2
14.9.15 TSH 0.01 T4 >100 T3 38.4
16.9.15 TSH 0.01 T4 >100 T3 37.2
30.9.15 TSH 0.01 T4 38.6 T3 15.4
19.10.15 TSH 0.01 T4 20.8 T3 8.1
30.11.15 TSH 0.36 T4 9.2 T3 4.7
17.2.16 TSH 8.77 T4 10.3
T3 ?
15.4.16 TSH 19.82 T4 6.5 T3 5.9
9.5.16 TSH 42.2 T4 4.6 T3 5.2
11.8.16 TSH 20.24 T4 8.8 T3 6.6
17.11.16 TSH 0.54 T4 11.8 T3 6.1
04.1.17 TSH 0.1 T4 25.6 T3 10.5
24.01.17 TSH 0.1 T4 32.3 T3 12.2
13.2.17 TSH 0.1 T4 36.1 T3 19.6
15.3.17 TSH 0.1 T4 11.6 T3 8.5
22.3.17 TSH 0.1 T4 5.4 T3 5.8
12.7.17 TSH 0.85 T4 8.2 T3 6.7 96 PULSE PER MIN
22.9.17 TSH 7.04 T4 6.1 T3 ? WAS ADVISED TO REDUCE FROM 20 MG TO 10 MG
CARBIMAZOLE
30.01.18 TSH 0.01 T4 19.7 T3 15.9
22.2.18 TSH <0.01 T4 19.7 T3 15.9 WAS ADVISED TO INCREASE TO 30 MG
CARBIMAZOLE
22.3.18 TSH <0.01 T4 27.4 T3 21.9 WAS ADVISED TO INCREASE TO 40 MG
23.4.18 TSH 0.001 T4>100 T3 28.3 PULSE WAS 106 A MINUTE WAS ADVISED TO INCREASE TO 60 MG
27.4.18 TSH ? T4 23.5 T3 14.1 PULSE 84 A MINUTE
Written by
emmamarymills
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One thyroid storm is more than enough for anyone and all the stops are usually pulled out to make sure it never happens again. True thyroid storm is life threatening so for your hospital to say they don’t have the resources to monitor him closely is absolutely unforgivable. What happens when he goes into storm, does he go to A & E?
Does he have an Endocrinologist looking after him - I hope so and what is he saying about all this? What about anti thyroid drugs - what does he take and how much? Blood tests - let’s see recent results.
I don’t want to worry you anymore than you already are but this needs sorted. Poorly controlled or indeed uncontrolled hyperthyroidism can be so dangerous - probably why they are now suggesting surgery.
Sorry can’t help with experts in your area, I am in Scotland.
Please post test results so that we can see what’s going on here.
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