Thank you for doing that. I’ll have a look. I am glad you are still painting. How is the teaching course?

Hope you had a good day.

Best wishes
Sophie

its pretty intense, im probably the youngest one there but my brothers doing the course too so im not too left out

plus its only part time so im not too overworked lol.

what do you do?
Alice

Teaching courses do have a habit of being intense. How old is your brother? I have one who lives in Australia.

I teach at a Montessori Pre-school in Hampshire (I’m on the border).

I will check out face book. I’ll try an d remeber my password.

Have a great evening.

I am hoping more people will let us know if they are interested.
Take care and best wishes
Sophie

ah cool a teacher too

i have 3 older brothers but the one who’s on the course is 25.

well one person has already said they’d be interested, so thats a start!
i hope it kicks off too even if we dont get that many there’s no reason why a small group of us couldnt meet up?

hope u have a good one too

Alice x

That is a good start. Lets hope for lots more. But as you say, we can still meet with however many people are interested.
Take care
Best wishes
Sophie

Hi Sophie, Sorry I dont know any of the names from GOSH, my mum dosen’t talk about it much. I’m 5’4’’ and no I dont have a problem with calories - or lack of them. Since my thyroidectomy this year, I have put on loads of weight. I used to be very skinny though, but I did manage to start gaining weight for the first time when I turned 30years old. After spending most of my life trying to gain the pounds, now I am struggling to lose the pounds. I know that I may sound whinny but I am having a hard time dealing with being a size 12-14, as I was always a size 6-8. However after the dreadful time I’ve had with being hyperthyroid, then the tyroid surgery and now being hypothyroid I’m glad to be here. I had a very large toxic thyroid nodule removed in September 09, it played havoc with my oesophageal symptoms. Although it did reduce my reflux, as it was large enough to put pressure on my oesophagus and trachea. So much less reflux (which was great), but also much reduced breathing LOL. Take care Sam xx

Hi Sam, It’s good to hear from you. Sounds like your thyroid gland has been rather troublesome, to put it mildly. What dose of thyroxine are you on? I was born without a gland and have been on thyroxine since I was about 5 weeks old. Do you know that you get all your medicines free if you are on thyroxine? If you have not got a medicine exemption card talk to your dr about it.

That must have been pretty scary being so hyper and having the gland press on your oesophagus and trachea.

What part of the south do you live in? I am west sussex but work in hampshire at a pre-school. 

Now you no longer have the thyroid gland, or nodule, how is your swallowing and reflux?

Take care and best wishes
Sophie

Hi Sophie, I’m still having blood tests to determine the dose I need of thyroxine, yes I have a medical exemption card for prescriptions. I used to have the pre paid certificate, as I’m on a lot of respiratory drugs and the usual for oesophageal problems. Since the thyroid surgery, my swallowing is much improved, however the reflux is just the worst ever. I am a little wary of some foods, as I had a bad time pre operative with eating. I am supposed to be on a soft - purree diet, but I dont always comply. What sort of diet can you tolerate? I know that you said you need calorie drinks, some are better then others, where as some are plain revolting. I’m so pleased to of made contact with other tofs, as even people close to you, who wittness the troubles you have, dont understand how rotten it can be. Have a good day Sophie, Sam xx

Hi Sam,
Good to hear from you. Thyroxine doses take a while to get sorted. Are they gradually increasing yours? Diets are sooo difficult to follow all the time. I tolerate most things except fat, cows milk and cream and I am on a high protien, low carbohydrate (low GI) regime. The problem is IBS, I don’t absorb enough, hence the calorie drinks. I am having Fortisips which are okay and are not too much volume. I have tropical fruit flavour.

Do you have the head of your bed raised? It’s helped me a bit. I have 2 stacks of bricks, 3 in each pile, under the head end of the base of the bed. It’s good although I kept sliding down the bed to begin with! What reflux meds are you on?

Is it legal to make someone with legitimate health problems redundant?

It is good to be able to talk about things like this. My mum is very supportive, but she went through it (like all parents) and has her painful memories too.

If your GP is friendly and supportive you could ask to see your early notes. There should be a summary of your care at GOS in your notes. As you know, it is your right to see them.

Take care and best wishes
Sophie xx

Hi Sophie, I take 50mcg levothyroxine currently, I take pantoprazole 40mg am then 20mg at bedtime, 10mg domperidone three time a day, also gaviscon advance on top of that. When I have the diffuse oesophageal spasm I take nifedipine and GTN spray. I know that I should of raised my bed, but I have not got round to it as yet. I do use plenty of pillows though - to raise up my head. I was thinking of requesting my baby notes re GOSH, just to reflect upon. How often do you have your thyroid levels checked? I was wondering what the normal time span is to check levels. I dont have any problem with IBS, I’m ok there. Re my dismotility of the oesophagus, I have a large gap with no nerve supply, loss of elasticity and strictures and a pocket, so they cannot say how I manage to swallow. Other then that of gravity, looking at the results they say that I shouldn’t be able to swallow food bolus - but I do!! I think that what is your “norm” from birth you manage to deal with, as it is all that you know. When I’m having a bad time - I jokingly ask to borrow someone elses oesophagus, just to eat my meal! If only it could be done. Take care, speak soon Sam xx

Gosh, you must rattle! What happens when you get an oesophageal spasm? Like you I depend on gravity for getting food down. I swear that gravity is stronger in some areas than others! Luckily no strictures but I did develop a pocket when I was much younger that stuck to my lung and food perforated through. That took me back to GOS when I was 16. The surgeon only knew there was a pocket so was suprised at what he found. He did a great job.

I take ranitidine and gaviscon for reflux. At present I am 200mcg of thyroxine. Am also on norimin to prevent further endometriosis and Sertraline to make me less grumpy!

Spent this afternoon building the new hen house. I hope they will be very happy and warm. They have a little window which I think I might make a curtain for!

Have you been in touch with other TOFS/OA’s. Havn’t heard from Alice for a few days.

Have a good night.
Very best wishes
Sophiex

Hi Sophie, yes I guess I must rattle with all the med’s, I also take citalopram to stop me being grumpy, LOL.
With the diffuse oesophageal spasm the pain is termed “intractable pain”. which means that it is un treatable, no ammount of pain killers will stop the pain, not even morphine. It is likened in pain terms to that of a massive heart attack, but unlike heart attack victims we do not loose concsiousness but stay very much awake in aggonising pain. It can last for around 24 hours, my worst attack lasted for 71 hours. The usual is 24 hours though. Along with the pain, I loose my voice and swallowing (even saliva) is very difficult as the pain intensifies as you swallow. I take 2 cariac drugs that help to relax the smooth muscle of the oesophagus, however as I dont have a cardiac complaint, it drops my blood pressure, so I have to be monitored. It truely is absolutely horrid. A&E were so good to me last year, when my attack lasted for 71 hours, they remarked on how well behaved and was coping with the pain. I have had 20 years experience though, so I’ve had lots of episodes to practice with LOL.
How is the hen house coming along? I think its a great idea to have curtains, make the girls feel at home. Take care xx

Crumbs, that sounds truly awful. Do you just get on with things and keep your fingers crossed that the attacks stay away? Have you had valium at all? I know alot of drs don’t like it due to the fact that it is addictive, but in cases like yours it might be helpful.

I have been wondering how many of us are on antigrumpy meds. That is an issue (the reason for being on them) that would be useful to discuss at the conference. If anyone reads this and would like to comment on this issue please feel free. I will contact Diane by phone.

The hens house is getting there in between showers. The hens are fascinated.
Take care and best wishes
Sophie xo

As you say, fingers crossed that the next episode of diffuse oesophageal spasm is a long way off. Valium would not help, although a pain specialist jokingly suggested it, not that it would eleviate pain - but I would be too stoned to care LOL.
I hear what you say about antidepresants - are many of us on them? I did not consider myself as ill, till the last few years. I had assumed wrongly that I was “normal” fit and well. It took many many friends to make me face the fact that I had ongoing health problems and to apply for DLA benefits. I am proud of what I have achieved in my life and being ill didn’t stop me. I now realise that I’m stubborn and fiesty, over coming many obstacles in life and taking the world on, as I thought totally healthy.
will the hens take to their new home easily? Or will you need to encourage them. You will have to upload pics of the hens and the new home on facebook. Take care xx

It is a very difficult thing to acknowledge that one is not within the norm, whatever the situation. As I was born without a thyroid gland and not enough thyroxine passes through the umbilical cord the lack of thyroxine held up my cognitive development. Even now I find it difficult to totally accept. In a sense having something to fight against gave me huge motivation. Being determined and stubborn is brilliant. Keep digging your heels in!

Did you get the DLA? That is yet another aspect to be considered at the conference. The fact that TOF/OA is a hidden and in many cases a long term problem that beaurocrats have no experience of and therefore don’t know how to approach us when we are unable to work sufficient hours to earn a sustainable wage. I am lucky to have a very understanding manager. But as the last few years have shown to me, I don’t have the stamina to work full time.

Regarding the antidepressants, I only know about you, my friend Steve (long gap O/A born in the 60’s and myself.

I will ring Diane tomorrow (or is it today now?) Slight difficulties, my poor mum is trying to move but things have gone pear shaped and BT have cut the phone off till the 21st. Not mine, but have been in and out like a yo yo today.

Take care
Sophie xo