Can anyone on here advise about whether they have been able to successfully claim PIP for Hashimotos and Hypothyroidism? (I’m now actually severely hyperthyroid at T4 38 and TSH <0.01)
I genuinely feel like I am going mad with the process and feel completely misunderstood. My health has took a nosedive off a cliff and they just aren’t getting it despite doctors notes literally explaining and validating that my physical and mental health are in decline and the impact it’s having on my life. It was my GP who suggested I start a claim (!!!).
I got my letter today to say they are not awarding after mandatory reconsideration and I’m wondering whether it’s worth my while going to tribunal over it, but I’ve been awarded 0 out of both sides and I have no idea how or why. I’ve plenty of evidence and supplementary letters and notes as well as appointment letters etc. I really don’t get it.
Do I start again or keep going? I don’t know if I even have the energy for any of it anymore
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JoSmi
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I think you mean my TSH is low and T4 is high. In January I had to have emergency surgery for an ectopic pregnancy after finding out in December that I was expecting (was told it wouldn’t be able to happen without help so was really a big shock but we were delighted after years of trying) and it didn’t work out obviously. The surgery went well and everything but the whiplash of emotions at that stage and the stress really done a number on me. From March I’ve lost 3 and a half stone without trying purely out of stress with other life stuff going on. I believe because my thyroid profile wasn’t monitored when I was telling both consultant and gp this was all happening it just spiralled out of control. GP didn’t want to do my bloods because they don’t see me as their patient and my endocrinologist is meant to see me every 3 months and we’re going on 7 now currently. I’ve been referred to cardiology from last week and I don’t have a heart problem, I have an uncontrolled thyroid but there’s no telling them. I’m not set to be reviewed again by anyone for another 6 now weeks after reducing medication and it having zero impact. Sorry for the long reply!
Thank you for your reply and my apologies for having misread your post!!
It would seem that reducing your thyroid meds is making no difference. I wonder why they haven’t added inanother med such as a Beta Blocker?Propranolol is often used in these circumstances
Honestly I’m not sure myself. I do really like my consultant and his help has been genuinely life changing in the past but since moving from seeing him privately to NHS I’m not able to see him as often as I would like (or at this stage as much as I need to). I’m not sure, thank you for the suggestion though I’ll look into it and bring it up when I see someone next!
Ok JoSmi your story is terrible. I have experienced similar although at the time I was naive and accepted what I was told (on more than one occasion). Honestly there are so many tragic stories on this forum alone, many of them caused by doctor ignorance/lack of care. So many people who probably ought to sue but we don’t. We need to get some clarity first on what we are trying to achieve. Get as much help as you can. Talking therapies etc or private counselling if you can afford it. Create some space where you can look at what has been happening to you. Try not to deal with everything at once.
Totally agree with you on the should sue but won’t, I do think health care generally is very take it or leave it since covid (and possibly before) but the NHS is really really on its knees right now. Thank you for your suggestions- I’m really sorry to hear you’ve been dealing with similar issues, whilst it’s nice to have someone to chat to who has a frame of reference I'm genuinely sorry to hear. I’ve been to a few counsellors, and they were really helpful at the start about practicing gratitude and steering your mindset but since the thyroid stuff has flared up I’m really struggling to differentiate whether I’m sad / anxious / or other because I’m genuinely feeling it or because my hormones are so severely skeewiff. I was trying to explain this to a friend the other day and they couldn’t relate (glad for them obviously 🤣) but I’m sure a lot of people on here could
You have probably just answered the questions wrongly. Get in touch with Citizens Advice or a local Welfare Advocacy. There are charities to help people fill in the forms. There are an incredible amount of questions on these type of forms that are easy to misunderstand. You will find some online organisation who will help. Or get someone you trust to read the forms - you will likely find they have a completely different understanding of what is being asked. It’s incredible the difference we feel being subjected to this illness and the reality of what they are actually asking. Do all this before you think of an appeal!
Thank you for your reply! From your POV would it be more helpful to begin a new claim or continue with the old one through tribunal? Just I can see what you mean about potentially answering questions “wrong” after having a look at the CA section on answering the questions. If the foundational part of the claim is wrong is there much sense arguing forward about it?
So much depends on our frame of mind. I can’t quite quote the recently published guidelines for thyroid treatment but there is a scathing description of our mental state. It’s shockingly cavalierly written and as usual it’s written in such a way as if to brush us off. Like it’s our fault, poor things just can’t possibly understand. Our frame of mind (well my experience) is that we are not always on top of things and not always sharp. These forms are a nightmare when we are not ‘on top’. As to the foundational part of the form, one thing I do not know is are you allowed to put new evidence forward. I know in legal cases it’s different. I think on balance this might not be the case with PIP. There is probably a deadline for an appeal so you need to get your skates on OR think about a new application. Get proper advice. I let the b.gg..s ride rough shod across me and I was not able to work from age 48. You need real help - even a trustworthy friend/husband who can read the forms from (dare I say) a less emotional aspect.
They will send you guides which tell you question by question how to answer each question and what pitfuls to avoid.
Also never ever send in any paper work until you have all your evidence and can send it in along with the application. Even if it means delaying sending it in. Also get a copy as they have a tendency to “lose” applications. Send it by recorded delivery so you can prove who signed for it!
Sorry to hear you're struggling so much, it's awful isn't it? Some of us really struggle to get anywhere near well even with a full range of thyroid meds.
It is worth going to tribunal, apparently many decisions are overturned at that stage.
Pip is awarded based on how the illness is affecting your life or affecting how you manage everyday things. The condition itself is (supposedly😏) moot. Hence people with severe mental illness diagnosis for e.g. are often not awarded (but it seems to me it's applied only one way ifyswim) Therefore, in your application explain, explain, explain. I know that when you have the see-saw up and down moments you can start gaslighting yourself or develop temporary amnesia that you're not that bad when you are in the managing ok phase. Then when you come down for whatever reason be it extra stress or a change in meds, you are suddenly reminded of just how ill you are. It is worth remembering that once your hypothyroidism advances to a certain point it's not just a case of being effectively disabled, you can end up so sick you need hospital. So you should put down your experience of your worst days.
It is a (common) mistake to place emphasis on doctors notes etc type evidence. My understanding is that mattered more in the old system. They have the ability to contact your GP themselves (although still include letters) The sort of evidence that counts is the kind clearly demonstrating your difficulties - real world stuff like aids. Also if you haven't already, add testimonies from close observers of your illness employer, partner etc.
But why is your T4 so high? What meds are you taking?
In my case many years of not being treated has resulted in my baseline of health being very poor. I simply cannot function even on NDT or something if it doesn't work well. Bed bound or housebound is my baseline.
I'll add I didn't apply myself on the basis of hypothyroidism but I did add it. You are allowed in the supplementary notes to add something like: I believe I have had this illness for xyz amount of time, during which I was untreated and subsequently my illness advanced to such a stage that it has been extremely difficult to achieve a standard of health that allows me to perform everyday tasks in a consistent and safe manner even with medication. My mental acuity has also been affected...etc etc...Then elaborate on ways this is.
Thank you for taking the time to reply to me I really appreciate it! I completely relate to you saying about the see saw and oh I’m fine today I shouldn’t be laying it on thick. I think what I potentially did do wrong was answer with the thought in the back of my brain that I didn’t want to get PIP without truly being worthy of it so I did answer very “on good days I can” before talking about the reality of the bad days.. and maybe not talking enough about that. Stress is my biggest trigger for being unwell, and from November when I initially filled in the paper form and sent my evidence to now I couldn’t be more different symptoms wise (literally from a T4 of 3 to a T4 of 38.. so severely hypo to the complete opposite) and whilst I did my best to make sure they knew that and had doctors notes and letters saying I was in diffs I don’t think they actually care.. and a tribunal only looks at apparently if they were correct not to award “at the time”.
My own thoughts about my T4 being high are that because I wasn’t monitored closely whilst losing a lot of weight (about 3.5 stone from March to now) because of GP not seeing me as theirs to monitor and my consultant not seeing me on the NHS to potentially end of September it’s just been allowed to rocket out of control. I’m currently on Levothyroxine and liothyronine (T3). They have lowered my dose and looked at it but the t4 has moved marginally downwards (from 42 to 38 over 3 weeks I think) and because it’s going down they’re happy and aren’t going to review for another six weeks, so I’m not really getting anywhere quickly.
I really like how you’ve explained the condition progression in your last bit, I’m definitely going to borrow that because it describes exactly what I think has went on. Thank you so much.
It seems almost standard to turn people down on first application but yes you should definitely appeal. The people at the tribunal are very different from the DWP assessors, much more human and understanding.
Its always advisable to get assistance from a professional organisation to make your application and also appeal. Citizens advice are very good but there are also other organisations that can assist.
Yes JoSmi I would definitely go through the appeals process. Although they do ask about your illnesses the focus is on how your condition affects you on a daily basis and not the illness itself.
I've been to five DWP tribunals some of my own and also supporting others. Unfortunately only one experience was ok the rest were awful. So I think it's best to go with an open mind but be prepared and take someone with you for support.
yes . Go for appeal. You can do this by zoom now or even telephone appeals. Im going through this now. It’s taking an age! But it will be backdated to the day you applied.
You can have someone with you for support. DWP stretch this out in the hope that you will give up. Appeals panel is independent and reads all the applications from the beginning and evidence. Make sure you are writing about your WORST days!
DWP job is to save the government money and NOT pay out. Please appeal
Thank you for your reply! I’m really torn between just starting another claim or appealing because I don’t know which one is going to get me the right outcome; but what you’ve said about saving money really does make sense!!
Always go to tribunal. They have a tendency to say no initially and overturned on tribunal. Stick it out if you can handle it! Contact CAB for assistance. They are great with this stuff.
FYI it’s not about diagnosis but how you are functioning with everyday tasks. Eg joint pain and fatigue significantly stops me from even brushing my teeth most days.
Thank you for your reply- I think I’ll give CA a buzz tomorrow and see what they say and advise. Have you or anyone you know went through the tribunal process and had a win? I’m just very aware if it doesn’t go my way it’s more time wasted, I’ve also heard they really drag the process out (even more so from first form to health assessment).. at the moment I’ve been waiting 9 months from start to then the no letter the other day
Yes. Many people are awarded from the tribunal process. The statistics are very high. Around 70% +.
PIP is a very long drawn out process, with some areas suffering more than others. If it doesn’t go your way, yea more time wasted. But, equally, if you don’t challenge it you’ve missed out too. Starting a new claim after 28th ya won’t change anything unless something very significant changes about your health.
You’ve got to be in it to win it as the saying go. The tribunal process is about 12 weeks max generally at the moment, and don’t forget if awarded, it’s awarded from the start of your claim which is a substantial amount that would go a long way during this cost of living crisis.
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