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Has anyone who suffers Hashimoto's thyroiditis been awarded DLA or PIP?

(88 Posts)
IrnBruTheNoo Wed 25-Jun-14 16:08:50

I was just wondering about this a while ago now and thought it may be a good idea to ask if others online may have claimed DLA or PIP for this condition. I know it varies with each individual, but some days I am really fatigued to the point DH has to help with every day tasks that others take for granted.

IrnBruTheNoo Wed 25-Jun-14 18:14:41

no one?

sanfairyanne Wed 25-Jun-14 18:26:25

better to try and get it fixed tbh. i really dont mean that flippantly. i mean that you are being let down if you still feel that unwell.
what are all your levels like atm?

IrnBruTheNoo Wed 25-Jun-14 18:42:58

I was diagnosed almost ten years ago now. My thyroid levels are sitting at 'normal' but I still have all the same symptoms I had back then. It's a chronic illness and it's never getting any better. I have always hovered around the borderline.

I struggle often on daily living tasks where DH has to get involved on the days he is not working. It's difficult for him too because his life is ruined. I feel like a burden to him because I cannot cope some days.

Sadly it's not a case of getting it 'fixed'. I'd have had the answer by now if it was that easy!!

Floralnomad Wed 25-Jun-14 18:45:04

Perhaps its not that that's making you ill ,have you been investigated for other things?

IrnBruTheNoo Wed 25-Jun-14 18:45:14

Initially I was on 75mcgs daily after diagnosis, then it dropped to 50mcgs and for five or so years I was on 25mcgs daily and I'm just recently back up to 50mcgs daily. It's a constant cycle of being exhausted every day, it's not a normal tiredness where you wake up refreshed in the morning like other people who are 'well', IYSWIM.

IrnBruTheNoo Wed 25-Jun-14 18:45:54

Nope, I've been back and forward over the years and I get the same answer. All my symptoms are more than likely related to Hashimoto's.

sanfairyanne Wed 25-Jun-14 18:59:25

that is an appallingly low dose you know
have you posted here about it before?
is your tsh under 1?
t4 and t3 high in range?
ferritin level? vit d level? b12 level?

TheDuchessOfSalford Wed 25-Jun-14 19:10:51

What are you exact levels though? 25mg and 50mg seems like a really small dose. I have the same thing and I'm on 200mg a day which keeps my level between 0 and 1.5. I know 'normal' is between 0 and 5 but I can't function properly above about 2. I had to argue a lot to keep the higher dose but it has made a big difference.

On my current dose I teach nearly full time, have 3dcs under 10 and parented single-handedly when DH worked away for a year but usually feel pretty okay. I don't think it's normal to be as incapacitated by it as you are.

When was the last time you had a full blood screen, as in TSH, T4 and T3 at a minimum? Are you under an endocrinologist or just GP? IME, thyroid issues are seen as pretty run of the mill by GPs and not always taken that seriously but if yours is affecting your day to day life that badly, you need to be referred to an expert.

sanfairyanne Wed 25-Jun-14 19:14:25

my gp tried to fob me off with 'normal' at tsh 4.5. i felt like crap. you need to keep increasing meds til you feel better really, or nowadays they often just go straight to 150mcg daily apparently

SideOfFoot Wed 25-Jun-14 19:18:08

I don't have hashimotos so can't comment on that. I have another long term chronic condition though.

Why don't you put in a claim for dla (or pip), it sounds like a sensible idea and the right thing to do. The worse that can happen is that they say no and then you are no worse off than you are now. I'd say define apply.

TheDuchessOfSalford Wed 25-Jun-14 19:41:27

There's also something to do with calcium levels and low thyroid that can make you worse but I can't remember what. Will check in a bit.

I've just registered the part where you said you've been like this for 10 years. Have you been referred to an endocrinologist at all in that time?

And what does 'always borderline' mean? What's your normal TSH level like?

I just can't get past how low a dose of medication you're on.

IrnBruTheNoo Wed 25-Jun-14 20:02:21

Thank you SideOfFoot, you're understanding where I'm coming from.
The point that seems to be getting missed is that it's a chronic condition and that it's not being managed well hence the difficulties I'm having on a daily basis. I don't have a social life either because I'm too exhausted to go out in the evenings. Not wanting pity, but being matter-of-fact to get across what symptoms I have and how it's affecting my life and whether applying for PIP may be worthwhile.

I did work full time before having DC but struggled with it, was tearful a lot. Very anxious. Just before having DC I dropped my hours to part time and found it was slightly better, but still found it hard to cope. The exhaustion can be terrible some days. I'm now SAHM and couldn't even imagine what I'd be like holding down a full or part time job, so good on you TheDuchess, no idea how you manage it.

I see a GP every so often to go through the usual cycle of why I am at the appointment, but get the same answers...not getting anywhere fast.

IrnBruTheNoo Wed 25-Jun-14 20:05:25

I was found to be low on vit D before Christmas last year, and that's when I had blood tests done. TFTs were done too. I'm on vit D and calcium supplements, have been since December last year when I found out.

No idea what the levels were sitting at but get told it's 'normal'. I explain to the GP that it may be normal on a reference range but it's not normal to me, I cannot function some days.

One GP did wonder if I may have chronic fatigue type symptoms but it has not be investigated any further.

IrnBruTheNoo Wed 25-Jun-14 20:07:20

Sadly thyroxine is the not the magic bullet though sanfairyanne. I have had my dose adjusted and it makes no odds what level I'm sitting at. I just feel crap all the time. It's more than just the thyroid part that needs to be looked at, but the autoimmune part of the illness just gets forgotten about.

IrnBruTheNoo Wed 25-Jun-14 20:09:01

Duchess I was referred to an endocrinologist in 2005 when I received the diagnosis of Hashimoto's. I had to see a GP at least two or three times before they entertained the idea of a referral's like jumping through hoops.

IrnBruTheNoo Wed 25-Jun-14 20:09:12

Diagnosed aged 22.

IrnBruTheNoo Wed 25-Jun-14 20:10:46

'borderline' meaning that they cannot justify a higher dose because my TSH levels are sitting a smidgen over the normal range....but only just.

liz5029 Wed 25-Jun-14 20:11:35

Have a look on the Thyroid Patient Advocacy forum, you do have to join, I believe they have a specific section for this. You can also find out more on alternatives to Thyroxine as it doesnt suit everyone, and there are other medications even if your GP hasnt bothered to mention them.

But try the TPA website I think people on there should be able to answer your question

IrnBruTheNoo Wed 25-Jun-14 20:18:28

Thanks will have a look liz

SideOfFoot Wed 25-Jun-14 20:19:37

IrnBruTheNoo, my problem is walking (caused by ms). I believe dla or pip has two component parts, one for mobility, the other for (dont know the proper name) but everyday life, cooking, caring for yourself. It sounds like this is the bit that you would be interested in (whereas I'm interested in the mobility bit).

It seems to be quite a complicated process and I don't know if you will be successful or not but it can't do any harm to apply. Keep a copy of your form when you send it away, if you are refused we'll worry about that later, you can appeal, but for now just apply.

IrnBruTheNoo Wed 25-Jun-14 20:22:58

Thanks SideOfFoot and I'm sorry about your MS diagnosis. I agree with you though, the second component is really what I'd be looking at. Would CAB be any good at this sort of thing? DH thinks I need to speak to a GP about it.

winterst4r Wed 25-Jun-14 20:23:04

There's a book on Amazon by Barry Durrant Peatfield that deals with Thyroid disease. He also does clinics in the UK.

IrnBruTheNoo Wed 25-Jun-14 20:25:02

The truth is if I knew I'd still feel as shit as this in my thirties I'd never have had a family at all, or got married. It's crap feeling like you're a burden to everyone else. My eldest doesn't always understand why he needs to come in early to get a bath when others get to play outdoors because by that time of the evening I'm too exhausted to look after him. That's the kind of issues I'd have to bring up if applying for PIP. I don't have family support locally.

IrnBruTheNoo Wed 25-Jun-14 20:26:28

I'm currently reading 'Why do I still have thyroid symptoms? When my lab results are normal'.

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