Aa
please help
I have a downs syndrome brother at 27years old. He has become poorly, having swallowing problems , choking on food, red rash on his neck, pain and sweats.
He had his thyroid bloods tested which the GP says were normal, so i pushed for a US scan as i noticed a swelling on the right side off his throat.
Well the scan as shown an enlarged lobe and a nodule at 8mm,
My brother is struggling with his throat, and i dont know to test for next? have you any recommendations? please.
I didnt know if he needed anti-body testing, as my brother has been in the Aand E two times this week with swallowing and breathing problems, and i dont think he understands what is happening to him.
PLEASE HELP.. I WOULD BE VERY GREATFUL.
He had his thyroid bloods tested which the GP says were normal, so i pushed for a US scan as i noticed a swelling on the right side off his throat.
Well the scan as shown an enlarged lobe and a nodule at 8mm,
My brother is struggling with his throat, and i dont know to test for next? have you any recommendations? please.
I didnt know if he needed anti-body testing, as my brother has been in the Aand E two times this week with swallowing and breathing problems, and i dont think he understands what is happening to him.
PLEASE HELP.. I WOULD BE VERY GREATFUL.
Hes been in the A&E twice in one week, they would only give him ibuprofen,and sent him home, im totall disgusted at what we pay our taxes for.The doctors are all text book and just come out off uni.with big look at me attitudes, they think thy are invincible.
I tried to say about our family history, but they dont seem bothered,we sat four hours,until 5am in the morning, to be given ibuprofen.
I have tried getting hold off a community nurse, who deals with special needs, to see if she has some clout to try to push for an earlier appointment.
As for the blood tests, i asked or gp for some anti-body tests but he said that was irrelevant, and wouldnt test for them.
Thanks for all your help, i do appreciate it.
I was even going to get in touch with the thyroid foundation to see if theyve any suggestions?
Thank you again
I tried to say about our family history, but they dont seem bothered,we sat four hours,until 5am in the morning, to be given ibuprofen.
I have tried getting hold off a community nurse, who deals with special needs, to see if she has some clout to try to push for an earlier appointment.
As for the blood tests, i asked or gp for some anti-body tests but he said that was irrelevant, and wouldnt test for them.
Thanks for all your help, i do appreciate it.
I was even going to get in touch with the thyroid foundation to see if theyve any suggestions?
Thank you again
Hi,
while he can't eat properly there are some things you can do to help him maintain weight. Eat foods that are soft - ice cream, custards, creamy soups (more calories than vegetable)....
If he is really unwell maybe take him to A&E. Can the A&E give him earlier referral to a specialist?
while he can't eat properly there are some things you can do to help him maintain weight. Eat foods that are soft - ice cream, custards, creamy soups (more calories than vegetable)....
If he is really unwell maybe take him to A&E. Can the A&E give him earlier referral to a specialist?
Hi,
I think you need to see another dr who will test, instead of your current doctor who sounds very unhelpful. Need to test antibodies, TSH, FT3 and FT4.
It would be best if these can be tested in advance of when you see the endo, as then there won't be any delay to get testing done.
Thyroid problems are very common in people with Downs Syndrome. (in addition to the family history). So the thyroid aspect needs to be looked into very thoroughly.
I think you need to see another dr who will test, instead of your current doctor who sounds very unhelpful. Need to test antibodies, TSH, FT3 and FT4.
It would be best if these can be tested in advance of when you see the endo, as then there won't be any delay to get testing done.
Thyroid problems are very common in people with Downs Syndrome. (in addition to the family history). So the thyroid aspect needs to be looked into very thoroughly.
I think he neesds someone that knows the thyroid!! can you call your local hospital or health center...ask them to give you an Endo that deals with thyroid issues.they are out there. doesn't mean he will be treated properly, but this does look like a thyroid problem to me.ENT is ear nose and throat, may be of help....but will probably not know how to treat the basic thyroid condition..i wish you and your brother the best and hope you find the help you need
Hes had a swallowing test, barium swallow and they said it was just gerd, i was not convinced thats why i pushed for the ultrasound,and low and behold his right thyroid lobe was greatly enlarged with the nodule.
I also asked the gp for some anti-body tests, but he said that was irrelevant.and wont do them.
I am only concerned because it his is swallowing thats effected greatly, and hes saying soup because hes scared off choking,like he has done in the past.
also he gets breathless, and whispers, as he cant get his breath proper,he keeps saying his throat is tight,
I will look into getting a ENT, and maybe push for the gp to try to get him seen earlier.
Thank you so much for your concern and your advice.
Much appreciated.x
I also asked the gp for some anti-body tests, but he said that was irrelevant.and wont do them.
I am only concerned because it his is swallowing thats effected greatly, and hes saying soup because hes scared off choking,like he has done in the past.
also he gets breathless, and whispers, as he cant get his breath proper,he keeps saying his throat is tight,
I will look into getting a ENT, and maybe push for the gp to try to get him seen earlier.
Thank you so much for your concern and your advice.
Much appreciated.x
I still say the ENT would be the best choice, but that is my opinion. They may need to do a swallowing test on him.
And you are correct, most Endo's specialize in diabetes and blow you off.
Does his PCP know he is losing weight, and more fatigued than usual? I don't know what your financial situation is, but if you can maybe contacting an ENT asking for their opinion if he should wait that long (3 weeks). I still say he should be seen quicker than the 3 weeks.
And you are correct, most Endo's specialize in diabetes and blow you off.
Does his PCP know he is losing weight, and more fatigued than usual? I don't know what your financial situation is, but if you can maybe contacting an ENT asking for their opinion if he should wait that long (3 weeks). I still say he should be seen quicker than the 3 weeks.
Thank you . I feel so concerned my brain just doesnt know were to turn, he has lost quite a bit off weight, and he used to love food but only asks for soup, which his not him.
The soonest time they could fit us into an endo is 12th november, which i think 3 weeks suffering is too long, also you can tell hes unwell with the problem, sometimes he cant talk proper his voice is all over. but the main problem is his swallowing.and he keeps putting his hand on his neck saying sore.
I feel totally helpless, i didnt know whether to find a private dr, but what do we need an endo or a surgeon?
Hes also saying hes tired and going to bed in the afternoon, and thats not him.
Do we wait for the nhs or do we try to find our own?
I know its killing me seeing him like this, as i once sat in his shoes, suffering like a dog.
All the endos ive seen have been diabetic specialists, and not interested in thyroid really.
Thanks for your help. and advice
The soonest time they could fit us into an endo is 12th november, which i think 3 weeks suffering is too long, also you can tell hes unwell with the problem, sometimes he cant talk proper his voice is all over. but the main problem is his swallowing.and he keeps putting his hand on his neck saying sore.
I feel totally helpless, i didnt know whether to find a private dr, but what do we need an endo or a surgeon?
Hes also saying hes tired and going to bed in the afternoon, and thats not him.
Do we wait for the nhs or do we try to find our own?
I know its killing me seeing him like this, as i once sat in his shoes, suffering like a dog.
All the endos ive seen have been diabetic specialists, and not interested in thyroid really.
Thanks for your help. and advice
How about getting in to see an ENT? Is he losing weight?
When I was having issues (submandibular gland), I was also on the jello, pudding, apple sauce and losing weight, they however got me in immediately to see an ENT & Endo.
Do they know he is actually choking on solid food? I am not trying to scare you, but my dad of all things passed away due to choking on food (no health problems-74yrs old), that is why I am flabbergasted on how non cholant they are.
When I was having issues (submandibular gland), I was also on the jello, pudding, apple sauce and losing weight, they however got me in immediately to see an ENT & Endo.
Do they know he is actually choking on solid food? I am not trying to scare you, but my dad of all things passed away due to choking on food (no health problems-74yrs old), that is why I am flabbergasted on how non cholant they are.
Thanks for you comments, but im greatly concerned, as they just give him ibuprofen,and sent him home, and we cant get in to see an endo till the 12th november, and all my brother is eating is soup,as he doesnt know what is happening to him. Our gp is totally rubbish, and all he says is his thyroid blood levels are normal, and i say my thyroid levels were normal but i had to have my throat cut due to graves and a nodule which was troublesome to me causing swallowing and constriction problems,
I feel for my brother as i know what hes going through,i just dont know what to do. as no-one seems to care these days.
I have just had to pay privately for my operation,as they were dilly dallying with me, and kept saying they were scared to cut my laryngeal nerve, etc, i was sick off suffering so i had to take a bank loan to rid me off my problems.
I dont want him to suffer like i did.
Many thanks for your replies,
I feel for my brother as i know what hes going through,i just dont know what to do. as no-one seems to care these days.
I have just had to pay privately for my operation,as they were dilly dallying with me, and kept saying they were scared to cut my laryngeal nerve, etc, i was sick off suffering so i had to take a bank loan to rid me off my problems.
I dont want him to suffer like i did.
Many thanks for your replies,
Weather it is thyroid related or not, he needs to be taken care of due to the fact that he is having difficulty swallowing.
I would take him to an ENT or Endo. What did the PCP recommend? Surely they are not just leaving it at that....Having difficulty swallowing should be a major issue that needs handling ASAP.
I would take him to an ENT or Endo. What did the PCP recommend? Surely they are not just leaving it at that....Having difficulty swallowing should be a major issue that needs handling ASAP.
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