Hashimotos

[jas1999]

At last the paediatrician has agreed to let jasmine see an endocrinologist. Hopefully appointment in October. She is still in pain with her goitre and they do not see this a problem it is constantly swelling and restricting her breathing.. I pray for some help from the endocrinologist...are there any questions I should be asking..I attach some picture of jasmines neck... The doctors say this is normal

[MidnightBlue]

Have they offered her an appointment with an ENT consultant, with a view to removing it if it is causing her pain and discomfort? when I had a goiter that made me feel like I was being strangled I saw an ENT consultant.

[emma1990]

Hi,

I was officially diagnosed with hypothyroidism in March this year and my goiter has not reduced in size since starting on thyroxine. I saw an endo in March and she was not bothered about it... results back today tested positive for antibody's and GP still not bothered about the goiter, not been referred for a scan once either. Hope all goes well in October x

[Winegum2]

That looks worse than my neck and I've been referred for an ultrasound (despite my TSH being 'normal' at 3.9) Has she been diagnosed with Hashimotos or Hypo?

[jas1999]

They keep telling me she has autoimmune thyroiditis/hashimotos. She is aso type 1 diabetic..her throat keeps swelling and at times appears to be bruised...her antibodies are above 600..like a lot of you I am fed up of being told her tsh is within normal range...she is on 125mg levithyroxine has to take painkillers every day for her aches and pains..they say this is normal...in all honesty I feel let down and more importantly she has no quality of life..xxx

[hjane]

Im surprised your daughter hasn't had an ultra scan on her neck . I had a scan within weeks after noticing my goitre . It would also clearly show if this was the cause of her breathlessness . I would go back to your GP and ask for a scan before the endo appointment .

[jas1999]

She has had a scan in June that shows enlarged thyroid with several nodules on the right hand side.. Have asked for another scan and they say it will show nothing more than the last one. We are no further forward than we were when jas was diagnosed..

[BexyLS in reply to jas1999]

and they haven't biopsied the nodules??

[jas1999]

No biopsy on the nodules am hoping the endocrinologist suggests this as the paediatrician is not keen on doing it at all......

[Sherry54 in reply to jas1999]

Wow, I have 3 nodules on my thyroid discovered in 2010, but can't see or feel them, but am suffering from trouble breathing, swallowing, and choking on food. I have an ultrasound done every year and one of them went from 1.4 cm to 2.0 cm so my doctor recommended surgery. The surgeon just told me no, its too small to create all these issues, and unless it's cancer he won't remove it, and if it's not cancer, he'll wait until its 5.0 cm. I said I'm 54 now, so lets wait for it to get larger, I get older, and the surgery becomes riskier and more invasive, what sort of sense does that make? Now I have to have another needle biopsy to see if it's cancer, which I would think Jasmine's doctors would want to do, a lung doctor and an ENT to make sure there's nothing wrong with my vocal cords since I'm hoarse, and again, he tells me this cannot be because of the nodule. I think he's wrong. Good luck it's a struggle getting these doctors to believe the thyroids the cause of anything you're suffering.

Sherry54

[jas1999]

Sherry 54. You sound just like jasmine her voice changes constantly 3 nodules which they say are not cancerous but no biopsy has been done.. Am at my wits end.x

[Fruitandnutcase in reply to jas1999]

I don't know much about it but how can they tell without doing a biopsy?

Have you contacted Louise for the list of sympathetic doctors? Wonder if your poor daughter's doctors or their families would be happy to be receiving the same sort of treatment they are offering if an untreated goitre was causing them such problems?

Have they checked out all her other things like ferritin, iron, B12 and vitamins D that you need to be high within their ranges to help your thyroid?

Make sure your daughter sees an endocrinologist who specialises in thyroid problems rather than one who specialises in diabetes only.

My heart goes out to you and your daughter and I do hope you can get someone to help you soon.