mum of 19 year old who has hyperactive thyroid since 2014.

[emmamarymills]

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

[Greybeard]

If you are in the UK they are entitled to a print out of all their test results. If you post them someone willbe able to comment further.

[emmamarymills in reply to Greybeard]

Thanks Greybeard63 I have them at home- will do it later- so nice to know there are people out there to help

[SlowDragon Administrator]

Is he on strictly gluten free diet?

It helps a lot of patients with Hashimoto's or Graves

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

Important to test vitamin D, folate, ferritin and B12 too

[emmamarymills in reply to SlowDragon]

He refuses to use a gluten free diet - he thinks i am a mad hippy- but am perservering here are his levels

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

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 PULSE 96

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

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 106 WAS ADVISED TO INCREASE TO 60

27.4.18 TSH ? T4 23.5 T3 14.1 PULSE 84

I would be grateful if you see anything in these results

[SlowDragon Administrator in reply to emmamarymills]

Sorry I have Hashimoto's and no knowledge of Graves

His results clearly show over active

Are you in UK

Contact Thyroid UK for list of recommended thyroid specialists

What does current endocrinologist advise?

[emmamarymills]

Thanks SlowDragon

will look these up - appreciate the help

[MrsGraves]

I am so angry and terrified to read this.

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.

[emmamarymills in reply to MrsGraves]

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

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

15.3.170.111.68.5

22.3.170.15.45.8

12.7.170.858.26.796

22.9.177.046.1?WAS ADVISED TO REDUCE FROM 20 MG TO 10 MG

30.01.180.0119.715.9

22.2.18<0.0119.715.9WAS ADVISED TO INCREASE TO 30 MG

22.3.18<0.0127.421.9WAS ADVISED TO INCREASE TO 40 MG

23.4.180.001>10028.3106WAS ADVISED TO INCREASE TO 60 MGINDEPENDENT TEST

24.4.1823.514.184

[emmamarymills in reply to MrsGraves]

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