Swallowing Difficulty

Support
1

Hello. My son is 33. Up to now, he has very good health but at the end of September last year, he collapsed during the night and has been diagnosed with hypotension. He takes 23mg of Levothyroxine each day. For the last 3 months, he seems to have problems swallowing. He cuts up his food into very small amounts and takes over an hour on average to eat. The Dr has diagnosed reflux and Prescribed Mezzopram but this doesn’t seem to have made any difference. He has also lost nearly 4kgs in weight. We are going back to the Dr this morning as he can’t go on like this. Just wondering if anyone in the group may have had a similar experience with their young person. Hope this is the right place to ask about this Regards

2

Hi Sora,
You don’t say what condition your son has which may be relevant but if you look up side effects of levothyroxine, swallowing difficulty is there along with various heart side effects, Hopefully your Dr will have thought about that today but if not maybe you should check. Hope your son gets better soon.
Sarah

3

Hello Freda, yes I forgot to say that he has Downs. No problems whatsoever, luckily until now. It seems to have followed on since his diagnosis of low BP. I didn’t know that Levothyroxine could have these side effects. I had read that Mezzopram which was prescribed for Reflux can sometimes hinder the absorption of Levothyroxine. He seems fine in himself, just this eating and swallowing problem. Tonight we are going to see Beauty and the Beast at the Elgiva which he has been looking forward to for ages. Just hope this swallowing problem turns out not to be cancerous. I have read that people with Downs are more likely to have swallowing problems, but this is just a recent happening which is why I’m so worried. Thank you for your reply. Regards.

4

Thank you for your comments. He has had a Gastroscopy at the JR which came back as normal and also the biopsy results were normal but he still has the eating/swallowing problem. Have done an econsult to our Doctor to ask if any other investigations could be suggested. When faced with food he just stares at it as if he doesn’t want to or can’t eat. Eventually, he will eat, cutting food into minute pieces and taking around an hour to eat. Such a worry, I’m really dreading meal times but don’t want to pressure him. If I ask what’s wrong he just says “nothing”. If I ask if he has pain he says no but he looks so uncomfortable when he does eat that there must be something else going on. Wondering if it could be nodules on his thyroid or even a large tonsil stone but surely Gastrosopy would have picked this up. Sorry if I have repeated myself.

5

Hi Sora

Is your son getting any support from a learning disability community team?

Perhaps a community learning disability nurse or a psychologist could help with the issues your son is experiencing.

Here is a link to the web page that tells you about the services they offer:

6

Thank you Neil. My Son has a GP appointment on the 14th after I sent an consult. She has suggested maybe a barium swallow, ent referral and also to maybe seen by a speech therapist. We live in Bucks but our GP is in Oxon. I am in contact with Bucks Carers regarding this problem, so will ask if they can give me contact details for a Special Needs Nurse in case it could be a Psychological problem. Thank you so much for your comments and suggestions.
Regards

7

That sounds like you’ve made a lot of progress. Please let us know how it goes.

Here are the links for the two Bucks Community Teams for People with Learning Disabilities in case they are of use:

https://www.hpft.nhs.uk/services/find-our-services/buckinghamshire/high-wycombe/

https://www.hpft.nhs.uk/services/find-our-services/buckinghamshire/aylesbury/

8

Thank you for that information.Will let you know how we get on.Regards

9

Hello again.Well things have’nt improved with my Son.After the Barium Swallow appeared to be normal I am wondering if there could be maybe more of an emotional reason.He now eats very little and still takes around an hour to an hour and a half to eat.Also drinking very little.I’m really very worried.GP is refering him back to Gastro at the JR then if they still can’t find a reason for this problem then refer to a Psychologist or maybe Speech Therapist.Did I mention before that he has lost 12kilos in weight since January.Just feel he is fading away and I am helpless to do anything.So sorry to talk about this again.Any comments would be much appreciated.Thanks so much.

10

Hi Sora, I’m so sorry to hear this news. I have reached out to a couple of people who I hope will have some knowledge they can share.

The community team for people with learning disabilities, which I mentioned earlier in this conversation, are likely to have psychologists and speech therapists. Would it be worth contacting them even before your son sees the people at the JR? I would think it’s likely your son is eligible to receive support from them without waiting for a GP referral.

11

Hi, I am sorry that your son hasn’t improved and you are still struggling. I am one of the learning disability nurses at the JR and you are very welcome to get in touch with us on 01865 743324 or learning.disability@ouh.nhs.uk We can then talk a bit more and see how we can help.

12

Thank you so much Neil.I will do that.