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

[IrnBruTheNoo]

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.

Cross posts (I'm a slow typer!)

CAB can be very helpful in filling the forms in.

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.

We haven't missed that point, that's what we're saying too.
It's not being well managed by the GP, so you need to go back and demand a referral to someone who knows more. You shouldn't have to live the way you are, so if the GP doesn't know what to do next, he/she needs to refer you to someone who does.

I didn't put the stuff about work and job in to make you feel bad, and I'm really, really sorry if I did. It was more just to say that if Hashimoto's is well managed, then it shouldn't affect your life.

See, other people managing with Hashimoto's like yourself Iwish make me wonder if there is more going on than Hashimoto's because you seem to be doing okay, as do others like yourself. I cannot cope some days, physically exhausted raising two DC. I don't have the energy to go out in the evenings.

the dose of thyroxine doesn't change anything because I still feel the same regardless.

Sorry Duchess I didn't mean to come across as frustrated, I do appreciate what you're saying. I've been back and forth so many times to the GP, tried different ones (every partner in the practice now) and feel I'm not getting far...I think I will ask to be referred though, but what can they do???

you say you have had your dose adjusted. do you mean to normal dosages like 150?
i really do sympathise but honestly, a proper dose of thyroxine is your first port of call, then maybe t3, or maybe a natural thyroid med
keep pushing
get all your results and post them on here and we can help too

They won't put me on 150mcgs though san because apparently I'm within 'normal' range...yet I have all the symptoms. It's really soul destroying going through this.

Definitely ask on health unlocked. The people on there are amazing and can help you unravel your results.

As it's autoimmune, it is possible that there are other things going on. They've got experience of this too.

Don 't compare yourself to me. I'm lucky that levothyroxine works for me, but I know from that forum that not everybody is so easily sorted.

if your tsh is above normal ie 4.5 you will continue to feel like crap
there is a book you could take in, undrstanding thyroid disorders. you can buy it in boots
it says in there that you may need tsh below 1

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

Have you tried it though? Like I said, I had to really fight to stay on the higher dose because the numbers on the screen don't fit with what the GP wants to see but it's about do much more than numbers.

I'm frustrated on your behalf that you seem to be being completely let down by your GP.

i am really sorry for you

can you change practise?

i just increased my dose myself then insisted on bloods to show i was still in normal range
it is crap

I have hashimotos (diagnosed December 2012 after I got so poorly I was hospitalised and dreading were 128 at one point) went up to 200mg levothroxin but had chronic diarrhoea and sweating that eventually reduced to 150mg (reading never came lower than 21 so still very high as they wanted them under 4) eventually after just sobbing at the senior doctor at my surgery that I wanted to feel well again I got a referral to hospital (not local one as specialist was in th next big hospital) she scanned my throat (haver growth to the right and lots of fluid filled cysts, they did an aspiration test too to rule out any nasties) and now on 20mg liothrynonine and 150mg levothroxin and finally starting to feel human again. Levels are at 1.4 and all happy, back to hospital later this year for review (started slimming world too to lose all the weight I gained) only downside is I think nhs trust will want to stop my liothyonine as it costs £248 a month to prescribe and doctors will only renew it once a month after consultant confirms that I need it. I truly feel for you but I really would push for a referral to thyroid specialist she has transformed my life!

OP have you also had iron levels checked? Thyroid problems and anaemia go hand in hand so could be another cause of fatigue. Also, if vitamin D levels low worth investigating gluten intolerance, as can be linked to all three.

Excuse all the typos was trying to type and talk to my mother on phone hopefully it makes sense

IrnBruTheNoo, I think CAB would help with this kind of thing. I applied many years ago with no help but absolutely no harm in speaking to CAB. Yes, your gp too, no harm in asking them at all, I believe they will write to your doctors anyway so probably a good idea to mention it to gp.

I'm sure you're not a burden to everyone else. I agree with you that the issues about you bringing your son in early because you are exhausted by that time of night sound like the very things that you do need to mention.

Sorry, cross posted. I remember just how horrific it felt before I was stable and I really feel for you.

sanfairyanne, that's what I did too, in the end. They were happy with a dose of 150mg because the numbers fitted into the right boxes but I was still fit for nothing by tea time.

I started taking an extra 50mg tablet and asked for a blood test about 6 weeks later because I was feeling pretty much normal again by that point. The GP wasn't happy because my TSH was about 0.8 or something but I kicked up a bit of a stink and she eventually agreed.

i was put onto 150mg, but after six months just wasn't feeling better. My tsh was "normal" at that dosage, after minimal googling I upped my own dose to 200 within a couple of weeks i felt totally back to normal.

after about three or four months i went back and confessed, but the doc said to go with it.

I have moved and changed surgery since and the new ones are a little more antsy about my tsh which is settled now at under 1 but other than that I have not a single hint that I am over medicated, so we have called a truce!

Pretty much the same as duchess upthread. Also advised my fil to up his own meds, he also feels better for an extra 25mg.

before they had the tsh test they would dose you up till you felt better or showed "hyper" symptoms and would then reign it back a bit, lots of doctors will only read test results and not view you as a person.

Agree with get a referral to a specialist and also change GP. And claim DLA/PiP.

You need a GP you can trust. Mine will talk to me and if he doesn't know something he will say so and refer me on to someone who does.

He also listens. So although my thyroxine dose is higher than it needs to be on paper he knows I feel better with it at a higher dose so prescribes it.

Get the form and fill it in, theres no harm in trying. I have an auto immune disease and have had to apply to cut my hours. I was filling in the form for DLA yesterday.

You need to go back to your consultant and complain. Again and again if necessary.

I have it. I was apparently okay in my blood levels on 100mg. I was still symptomatic. I wrote and complained to the consultant and said that I understood the risk of over medicating but as it was I had no quality of life. They agreed to increase my thyroxine as long as I remain under a certain level (can't remember which result it was ) in my blood test. I am now at 175mg and feeling much better.

I also take cefalexin daily (an antibiotic) to deal with the autoimmune side as I have recurrent cystitis and infections because of the illness. I am prescribed 3 months supply in one go and I increase to a full treatment dose (go from 1 to 3 a day) as I feel I need it. This has been a lifesaver for me..

I think you need to push more and argue for better treatment. Also have your pituitary function checked. I also have a pituitary tumour which secrets prolactin (common in both diseases) and getting dostinex for this to reduce the levels also meant my thyroxine was being absorbed more. Please ask for your bloods to be checked for this - it is not routine but can make a massive difference. If you are on the contraceptive pill as well this can artificially raise prolactin levels too.

Re read and saw you haven't seen a consultant since 2005. You need to go to your gp and demand a referral to an endocrinologist. I see my consultant every 6 months at least (uk, nhs).

also when do you take your thyroxine....anecdotal evidence suggests taking at night before bed, as the digestive system slows down and your body gets a longer time to get at the drug.

Also.. I have experience of claiming dla in my family (my mother for chronic long term crohns) and you have practically zero chance of claiming unless you can show you are regularly seeing a consultant / specialist or are having regular gp appointments so if you are going to try to claim you need a referral ASAP.

I tried to claim money back on my water bill (for my chronic cystitis) and they said no as apparently my condition should be managed with medication - which I found ridiculous as you could say the same thing about mums for example but they awarded the discount to her. And that wasn't even dla- that was a water reduction rate for using the toilet so much.

Autoimmune thyroid condition, low vit D, iron, fatigue out of proportion to your "normal" thyroid levels...

I think you need to push for other tests, all of the above may be indicating other/bigger issues.

Ceoliac would be the first test I'd be wanting, though if blood testing is negative it may be worth a gluten free/grain free diet for a couple of months (I highly recommend reading Marks Daily Apple blog which has a searchable archive). The coeliac testing has a significant false negative testing rate so the grain free exclusion diet is a good next step. It can't do harm and may help you immensely Or not! But you won't know unless you try :)

I think you are getting fobbed off by the medics blaming everything on thyroid rather than getting further investigations to find the actual cause!

Sorry, that's not really answering your Q...

I think it's also significant to point out I was diagnosed at the age of 22, so I've not really had a life. Most other people who are diagnosed with Hashimoto's tend not to be diagnosed until their 40/50s. My health has been screwed since my late teens as I've had all the symptoms since then.

When were you all diagnosed with the condition?

I'm going back to the GP again. DH thinks I should be there every other week to complain about my symptoms and eventually they will do something. I will push to see a consultant as well.