Hypo and disability: Does anyone know why the... - Thyroid UK

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Hypo and disability

Suedan profile image
20 Replies

Does anyone know why the health authority (GP's, Nurses, Endo's etc) do not inform you of your disability status once diagnosed as Hypothyroid?

Just because it would have made life alot easier for me when I was at work if I had known that I would have this support.

Sue

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Suedan profile image
Suedan
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20 Replies

The Disability Discrimination Act 1995 (DDA) replaced the quota scheme, the designated employment scheme, and registration as a disabled person under the Disabled Persons (Employment) Act 1944.

Now you don't register as disabled in order to get rights under the DDA or Equality Act 2010; you just look at whether you meet the DDA/Equality Act definition of 'disability'.

The introduction of the employment quota scheme with the 'Disabled Persons Employment Act 1944 secured employment rights of disabled people. However, successive governments failure to enforce the scheme and the obvious preference for voluntary policies of persuasion have not only failed to provide disabled people with jobs, but have also emphasised the traditional divisions between them and non-disabled people. The quota scheme specifies that all employers employing more than 20 workers just employ three per cent of their workforce from the disabled person's employment register. The maximum fine for employer's who break the law was set in 1944 at £100 - it has never been updated! Although the overwhelming majority of employers ignore the quota scheme there have only ever been nine prosecutions and the last one was in 1975.

^copied that from elsewhere, but it reads to me as, as there is no longer any particular register (which was kept by the councils/social work and not medical peeps btw), there is no longer any "disability status" to inform you of. You are as able or as disabled as you are. If you tell your employers you have a debilitating illness then they have to treat you accordingly.. Just having a particular illness or disability, is kind of irrelevant these days its how that illness or disability affects you that matters. But it was never upto the medical establishment it was always in the hands of local government to keep any registered, the only input from doctors came when your social worker (usually) requested information from the GP when filling out any assessments required.

Not sure if this is helpful or not :)

Suedan profile image
Suedan in reply to

Thank you. I was totally aware of there not being a "register" that you spoke about (carer of 2 disabled children for far too many years to mention).

I can see that there is no obligation for any medical professional or otherwise to inform someone of thier "disability status" for want of a better expression, however, maybe out of common courtesy of a so called caring profession.

Just shows though how flimsy these Acts are and how they can be translated.

I think it is helpful for people to know about this and that there is this option if they so wish, all the same, there are as a matter of fact examples of employment law which upholds the case of a person with thyroid condition and unfair treatment under the DDA.

in reply to Suedan

I agree they should inform you, but they never have. It always was upto the likes of social work to do that.

Although the social work departments are all far too thinly stretched and have been for too many years that they just dont have the time or man power to help all the people that need it, for even something like giving out information.

I do remember years ago that when 2 of my children were diagnosed with their problems the first thing the doctors did was pass me on to social work who were supposed to tell me all the non medical things I should know, never even heard from them either time.

greenginger profile image
greenginger

In what way are you disabled if you have hypothyroidism? I am not being funny I am genuinely interested as to what you are referring.

LinDonaldson profile image
LinDonaldson in reply to greenginger

Hi there Greenginger,

It took me years to admit that hypothyroidism had caused me to be disabled. Physically, my joints and muscles were so painful that I found it difficult to walk. I became and still do experience extreme fatigue. Mentally, I was unable to 'police' my thinking and found it hard to retain new information or recall old information. I was unable to make coherent decisions at times. My thoughts would become recursive so that I could not come to a conclusion. Writing reports became very difficult and one which might have covered three sides of A4 became a thesis. I was a reearch psychologist and relied on statisical analysis. I lost the ability to count or to manipulate figures in the way I used to when in the early stages of full blown hypothyroidism.

Secondary infections are really annoying and potentially life threatening. I am anaemic quite often, had a very severe vitamin D3 deficiency and will always have to take supplements. I have digestive problemsqand congestive heart failure,. the list is positively endless.

I am 63 now and 'medically retired'. My GP has been very supportive in many ways. I have been taking thyroxine since 1994 but recently changed to T3 therapy.

Why ask the question and glad you are interested?

Regards

Lin

greenginger profile image
greenginger in reply to LinDonaldson

Lin

I am 43 and hyper not hypo yet I am interested because I am unaware of anyone on disability due to thyroid complaints.

I was a Police officer and because of many of the same issues you have spoken about I had to leave work. I thought I was going mad and could no longer deal with people or the large amounts of paperwork involved. I found it hard to do nights due to fatigue especially driving.

Nearly 2 years after leaving work I was diagnosed as hyper and put on meds. That was 22 months ago and I am better than I was in lots of ways but I still have brain fog, sore joints, tiredness, poor balance, poor digestion and yes I have been anaemic for years on and off and lacking B12 and D3 and yes I have tried supplements.

My point is that I need to work for financial reasons and yet not sure if I will be able to physically. I am a SAH mum to 3 young children and due to my husband working I can claim nothing from anywhere. Not even my prescriptions cost at £7.65 per month. Yet for all that I am guessing that I would never be described as disabled in any way never mind receive any help financial or otherwise.

I have no close friends anymore and no longer speak to a very unhelpful family.

LinDonaldson profile image
LinDonaldson in reply to greenginger

Hi greenginger,

Reading your post kind of reminds me of me and many others on this forum. I truly feel for you because there is little acknowledgement by the medical profession in this country about how disabling hypothyroidism is.

According to the Disability Discrimination Act if a person feels that they have a disability then they have one. The person no longer has to be registered disabled to prove that they are.

I understand about the benefits but is Employment and Support Allowance (sickness benefit) tied into your husband's earnings? I have a feeling it is not but check with the department of works and pensions.

You may also be entitled to Disability Living Allowance and the best thing to do is get a form and read through it to see if you think you qualify. Keep a copy of your medical records and seek advice and guidance from your GP. I wrote my GP a letter outlining all my symptoms and although she preferred to say I had Chronic Fatigue Syndrome (CFS) and depression, she did back up my application for DLA eventually. She also realised that it was highly unlikely that CFS would include symptoms of anemia and VD3 deficiency.

Anyway now I claim Employment and Support Allowance (support group) and Disability Living Allowance. This means that I have an income of about £220 per week. I cannot tell you what a difference this makes because I can pay for private medications and blood tests.

You should ask your doctor to sign you off as sick, even if you are not working and make a claim for Employment and Support Allowance. Also it would be good to seek advice from a benefits advisory agency and look at the department of works and pensions website for information about benefits. .

Incidentally DLA is not a means tested benefit.

I also understand about not having close friends - it is very hard to make friends and to keep the friendships going when we suffer from thyroid issues. Don't despair though because we are all here to help.

Have you had blood tests recently? If not then I recommend that you do and post the results on here so that we can help analyse them. Full profile for anemia, Vitamin D3, vitamin B12 and thyroid function would be a good start.

Take care

Lin x

greenginger profile image
greenginger in reply to LinDonaldson

Thanks Lin

Firstly as of April 8th here in the North DLA is changing to Personal Independent Payment. So no point applying for DLA.

Secondly my GP and endo simply dismiss my ailments and would never sign me off ill for anything. When I was working and started being ill they gave me no support and I dont expect any now.

Thirdly my husband works and although it is not a huge wage we get no financial help.

As I have Graves with hyperthyroidism, it is classed as temporary, unlike hypthyroidism, even if it eventually leads to surgery or RAI and then hypthyroidism. As a result I do not get free prescriptions unlike people with hypothyroidism.

I am supposed to see my endo (useless as she is) every 3 months but still waiting for my January appointment. I actually walked out of my last appointment after telling her she was useless. I am still awaiting my last blood results from October!!

Still it will not be long before they take me off carbimazole so we will see what happens then.

As for Employment and Support Allowance my understanding is that it is based upon my partners income and only lasts a certain amount of time for under 64 years so I am not sure it will be of any use.

Thanks for your reply

LinDonaldson profile image
LinDonaldson in reply to greenginger

Yes of course DLA is changing to PIP sorry but it is still worthwhile applying. Try and get your forms in by 8th April because then you can appeal if refused. You can get others to observe the way you are and submit reports in support along with your application for DLA/PIP.

If your GP or endo won't support you then change because you do deserve support. Surely if you become hypothyroid for any reason then you are entitled to be classed as hypothyroid. You are entitled to ask for blood results under the Data Protection Act.

I have been claiming ESA for three years now. I also have insulin dependent diabetes, osteomalacia (caused by Vitamin D3 deficiency, arthiritis and asthma. It took me two appeals before I was listened to but I got there in the end. There i no way I can work although I am a volunteer community activist and do some psychological research.

Did not know husband's income affected ESA so I would enquire about that.

Wish you luck for the future and hope you recover and are able to go back to work.

Regards

Lin.

LinDonaldson profile image
LinDonaldson in reply to LinDonaldson

Just been looking at ESA again. Are you still able to apply for contribution based ESA as you have been away from work for some time?

greenginger profile image
greenginger in reply to LinDonaldson

I dont know I need to look more closely at it all but thanks for your advice.

Helen_67 profile image
Helen_67 in reply to greenginger

HI, When you are diagnosed with Hypothyroidism you qualify for free prescriptions for the rest of your life ask your GP for a medical exemption form. The lady in the chemist in Asda told me. no one else did. Helen

Rugbyman_ profile image
Rugbyman_ in reply to LinDonaldson

Morning all, very interesting as I've just been diagnosed with Hypothyroidism. My thoughts are with am I disabled because I to have exactly the same issue you've mentioned but worst of all and the part thats " killing " me is my antibody count is 1123 when normal counts are between 0-65? I try to keep as fit as I can at 43 but somedays it's soo painful in every joint and as for fatigue..... It's depressing, for me. Great to be here and thanks for the advice.

AngelV profile image
AngelV in reply to greenginger

The Disease destroys your life! Althougho I am a Professionalf Solo

&

Decades Dancer

&

Try to be as Active as possible

Walking & Swimming !

I was diagnosed in 1990

&the Conditions it had given me are Cardiomyopathy, Angina,

Renal Disease,

Immune Dissfunction,

Odema

I've had Cancer too !

I'm a Veggie, I don't Drink or Smoke,

&I'm on 10 lots of different Meds a Day since 1990!!

Ican't drive, as the

Eye - Brain

Co-ordination is slightly out of Sync

&

I get horrendous muscle cramps, even in my toes & Heart!

I have to sleep sitting up as to lie down any flatte means I could drown in my sleep, due to a relapse in my stomach muscles, causing massive acid reflux!!!

Hypoparathyroidism

Is an extremely Terrible & Ruthless

&

Little know, incurable & Lifelong Severe Disease!!

Feckedoff profile image
Feckedoff in reply to AngelV

Hi you're comments have really helped me I was very fit, I have been ill for 10 years muscle aches kept getting blood tests for bones as disc in back and neck kept trapping nerves.

Was sent for MRI discs are bulging, every time back or neck went they also diagnosed with carpool tunnel , went for nerve function tests these came back clear, it was a calcium deficiency, I was frequently given iron tablets and folic acid was know two stone over weight.

Had an episode when every bone in my body ached for weeks,then my back went lasted 8 weeks off work,back at work could hardly walk due to pain in knees there was swelling at top of knees, GP sent me for X-ray still on and off pain in knees constant back and neck pain.

Also been treated for irritable bowl and pelvic inflamtion, my menstrual cycle is a nightmare I have three children and there labours where easier than my monthly period, also have mental confusion my confidence has gone iam over sensitive and catch the cold or a viral infection on a monthly Basis.

Was also sent for heart trace after I started suffering chest cramps, I would wake up in the early hours of the morning feeling as if my chest was cal lapsing in, I have episodes of burping that goes on for hours, my heart trace advised that I had a low heart rate.

Plucked up courage to go GP and challenge there Carpole tunnel and asked why it is only present when my back or neck is having an episode, GP advised he was going to carry out more blood tests when he asked my to explain symtoms in hand I told him it was like tingling all over.

Blood tests came back advising that I had under active thyroid I was prescribed 50mg of levothroxcyn , it has been recently increased to 75mg , I take supplements of calcium and magnisem, eveining primrose,omega 3,B12 these supplements.

I feel these suplplents have helped with bones and muscle aches,but suspect my levothroxyine will need increased, still constantly freezing tired, bouts of brain fog, aching wrist this really weird feeling in my legs that makes me feel as if I am going to pass out, oh and my monthly cold and throat infection.

I am so sad I am so happy that I got that off my chest and that I am not an insane hypercondriact, just a wee bit of a bummer about the levels of starvation you need to maintain healthy weight.

LinDonaldson profile image
LinDonaldson

Sorry I said infections in the last para because I constantly have skin infections. Of course things like anaemia are not infections.

penny profile image
penny

Hi Lin, I am not in any way advocating its use but...have you tried neat lavender oil for your skin? I find this absolutely brilliant, it stops a cut from bleeding almost immediately and speeds up its healing. I also mix it into my face cream, along with calendula oil. I mix lots of other things in too but then I have tough skin and hardly ever react. I find hemp oil good as well. (Aromatherapist.)

If you wish to do a patch test first then use the inside of your elbow - never behind the ear.

LinDonaldson profile image
LinDonaldson in reply to penny

Hi Penny,

I do use lavender oil for various things like burns and to reduce pain from cuts but the infections I have are things like ringworm and yeast infections. The GP provides effective cream but it is all so embarrassing.

Regards

Lin

penny profile image
penny

Hi Lin, as a farmer's daughter I used to get turned purple for those things - gentian violet. (Interspersed with yellow for iodine - did that sting!)

I will look in my aromatherapy 'bible' and see if there is anything for ringworm. How do you keep catching ringworm?

AngelaGreenlaw36 profile image
AngelaGreenlaw36

Hiya

Diagnosed with underactive thyroid since 2004 I was aged 24 year old started on 250 micro grams was diagnosed with this whilst in second trimester pregnancy, son Ali was born breech and fast as he was my second pregnancy, Ali cried more, he was less interested in me singing songs thinking now it, could have been his glue ear then, but he wasn't diagnosed with until nursery ask health visitor to check hearing again for 3rd time, cause at birth Ali failed his first hearing test, then was referred for a second hearing for my sons Health visitor JS to give him a pass on both sides when she should have failed him, but said that he was distracted by his big sister, and that's why she pass his hearing test, so now 2007 Ali has his referral to ENT this time, their they find he has a very significant amount of hearing loss due to glue ear they talked about grommets and removing his adenoids during the operation July 2009 after which he'd be 5 in August 2009, but was keeped back a year at nursery for speech and language therapy, then started school aged 6 in August 2010 was still far behind academically so he went for a Griffiths test at the beginning of 2011 then in July of 2011 gene test got results 7th of Dec 2011 at Edinburgh sick kids hospital to seen the genealogist who told us Ali has Global developmental delay duplication of chromosome 7p caused by me being undiagnosed during the first trimester of underactive thyroid, Ali is 12 and is in p7 have a meeting Tuesday about the support he will need at High school, he can play Xbox one games, he still asks me to read messages he receives online on the Xbox from school mates and I write down what he wants to reply back so he can type it back to them himself, if he's to get something from the shop that I need to remind him what it looks like and where it might be in the shop, now in April 2015 (after birth of my son Kayson), if your pregnant and have underactive thyroid after the birth they test you're baby for thyroid function levels, they didn't do this in 2006 after my other son Akmal's birth, was told kayson's thyroid function is working good they said, does underactive thyroid qualify for pip and would my son Ali qualify for dla.

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