Help for Daughter who suffers with autoimmune hypothyroidism disease

kksweety

Hi,

I think it would depend on situation. I went for a medical where they asked me about day to day problems, and how far I could walk etc and as far as I know you have to 'score points'.

Despite being on medication for 5 years now, I still have times I feel terrible and if I do too much I'm bed ridden for days. I know a lot of people with the same problem even though blood tests come back within range.

I have a family member who is a civil servant so she is the one who put me onto that and told me what forms I needed etc. So I will ask her to write it out for me and will post when I get a reply

I'm a graduate now btw and am working full time (which kills me).

kksweety

In terms of uni disability money, again, prob depends on situation.

Specifically I was given it as all lectures were put online so if I couldn't get in I could at least have access to them at home. My one also included a sort of advisor person with so many contact hours a semester to help work out what I can do to help myself and to talk to lecturers if need be. I think I had to have a couple of coursework extensions and things when I had pneumonia.

mumps

I am another with hypothyroidism who is surprised at benefits being available. The big problem is before you are diagnosed, my doctor kept insisting I was depressed, honestly I could hardly get through the day by the time I was diagnosed. I am on med and been OK for four or five years. Sometimes, well alot of the time if I am honest, I think I need a higher dose but that might be because I am nearly 60 and still want to have the energy levels of an 18 year old.

Jami74

mumps wrote: »

I am another with hypothyroidism who is surprised at benefits being available. The big problem is before you are diagnosed, my doctor kept insisting I was depressed, honestly I could hardly get through the day by the time I was diagnosed. I am on med and been OK for four or five years. Sometimes, well alot of the time if I am honest, I think I need a higher dose but that might be because I am nearly 60 and still want to have the energy levels of an 18 year old.

Yes that was my experience too. First they told me I wasn't 18 anymore and couldn't expect to be full of energy, then because I had a child under two the doctor wanted me to have Post Natal Depression. Then they tried to give my Chronic Fatigue Syndrome but thankfully because of family history they let me try the meds. Luckily now they leave me get on with it. Last year she phoned to say my TSH was "in the danger area" and suggested I cut down which I did but six months later and I had all the symptoms of being underactive so I've increased again. It seems I really need my TSH to be <1 to function normally. I know if my levels were to drop then I would struggle with normal daily living so I'm hoping that things will stay consistant for me.

dmg24

kksweety wrote: »

Hi,

I also have Hashi's and found out midway through my absolutely terrible first year.

The only benefit that I was able to recieve was disability in youth which was £90 odd a week.

Also I got some disabled student allowance for anything I needed, like if i didn't already have a computer and printer (including insurance), printing paper and ink. They also paid for my internet. You have to pay for these then send a copy of your payment and they refund you in about a week.

I also got an access to learning fund from uni which was over £1000.

If you need any help/advice or anyone to chat to about studying with hashi's feel free to pm me!

You didn't really mean to include the word only did you?

WolfSong2000

kksweety wrote: »

Hi,

I think it would depend on situation. I went for a medical where they asked me about day to day problems, and how far I could walk etc and as far as I know you have to 'score points'.

Despite being on medication for 5 years now, I still have times I feel terrible and if I do too much I'm bed ridden for days. I know a lot of people with the same problem even though blood tests come back within range.

I have a family member who is a civil servant so she is the one who put me onto that and told me what forms I needed etc. So I will ask her to write it out for me and will post when I get a reply

I'm a graduate now btw and am working full time (which kills me).

I get you - I was the same when sitting my A-Levels, but I still don't get why you were entitled to grants, free laptop, etc?

I fully understand (and would expect) the university doing everything it can to help you, e.g. extending deadlines, making lectures available online, etc, but why do you need £90 a week? Why do you need a free laptop? How on earth is that related to being overly tired?

Please don't take this personally, but this kind of thing (and I mean in general, I'm not picking on you) really annoys me. I had two housemates when I was doing my undergrad - one was deaf (had hearing aids, so no real issues) and another was apparently dyslexic. I could understand them getting extra time in exams, etc, but both got free laptops, free printers, printer paper and ink as well as hundreds of pounds worth of software.

The software I can understand (though I think the students should pay a nominal amount towards this if they can afford it), but why on earth should they get a free printer, etc, when they were perfectly capable of affording one themselves? The fact they were perceived to have disabilities had no impact on whether or not they were able to buy all this for themselves, yet it was just handed to them.

I had the same when I went to see uni support about memory issues. They were trying to throw expensive digital recorders at me to use in lectures and I had to be very firm when saying it wasn't necessary and would be a waste of money.

mummyfie

my 13 year old daughter also has autoimmune hypothyroidism (i`m 43 and i have "reg" hypothyroidism), she ,although on medication and giving "normal" blood test results still suffers alot of aches and pains , after PE lessons she often has a slight sprain or strain injury, this week it`s her right knee cap`s turn ! so she does have a few days off school with either pain, feeling dizzy,sick etc. we don`t get any benefits or considerations because of our disease. i dont want anything i`m not entitled to but if anyone know`s of anything we could claim for i`d be grateful. a blue badge for the car would be nice , not just for when knee caps are displaced ,but because i always forget where i`ve parked the car .. no seriously i do ,its one of the symtoms of hypothyroidism ,brain fog i think is the kind way of explaining it! at least i`d know the car was at the front of the carpark.

Jami74

mummyfie wrote: »

my 13 year old daughter also has autoimmune hypothyroidism (i`m 43 and i have "reg" hypothyroidism), she ,although on medication and giving "normal" blood test results still suffers alot of aches and pains , after PE lessons she often has a slight sprain or strain injury, this week it`s her right knee cap`s turn ! so she does have a few days off school with either pain, feeling dizzy,sick etc. we don`t get any benefits or considerations because of our disease. i dont want anything i`m not entitled to but if anyone know`s of anything we could claim for i`d be grateful. a blue badge for the car would be nice , not just for when knee caps are displaced ,but because i always forget where i`ve parked the car .. no seriously i do ,its one of the symtoms of hypothyroidism ,brain fog i think is the kind way of explaining it! at least i`d know the car was at the front of the carpark.

What's "reg" hypothyroidism?

If you are experiencing symptoms of low thyroid, like forgetting where you left the car (yes, I've dragged my painful joints and heavy muscles round carparks trying to find my car before I was on the right dose) then maybe you need to see your gp or consultant to discuss this. If you are recieving the correct amount of thyroid medication then you shouldn't be having symptoms of being underactive. There's a large reference range of what's 'normal' but what works for each individual is different so just because you're within the 'normal' range doesn't mean you are at your normal. If you think you need a disability badge due to hypothyroidism then you need to see your doctor.

mountainofdebt

devildog wrote: »

tbh I am really surprised that the Navy are prepared to sponsor her especially as she would have to join the Navy and generally anyone requiring to take treatment/medication on a daily/regular basis(?) would not be considered suitable for the Services (speaking as a former member myself and having looked further into it for child of mine who has a disabling condition and off to Uni(hopefully September subject to grades) too.

I too am surprised that the RN will consider the OP's daughter...I've had to learn alot about medical standards for the RN in the last year !

Hopefully the person that she spoke to knew what they were talking about and that they haven't given her false hope.

mummyfie

by "reg" i mean straight forward hypothyroidism,in that my thyroid is just not working , my daughters case is that her thyroid was working until it was attacked by her immune system ,the doctors test her blood every 3 months to check that nothing else is under attack.i was only diagnosed a couple of months ago ,so yes my dosage will most likely change , and hopefully i`ll feel a bit more human then .