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.

"I think you are getting fobbed off by the medics blaming everything on thyroid"

Raw I've been saying this to DH for ages, tbh. I feel there's more going on in my body than just Hashimoto's...

yes but they havent actually treated your thyroid yet!

anyway, definitely, go in every week til something happens

what are all your levels including ferritin, b12, vit d? get printouts and keep a folder
also a celiac test would be a useful start

there are lots of related autoimmune conditions but start by getting your diagnosed condition under control

It is awful to suffer through what should be the most active and exciting years of your life. I can identify with that. I began suffering at about 17, was diagnosed with related kidney issues at 18 and finally everything else at about 21. I spent my 21st birthday in tears because I was so ill and felt so cheated that my 21st was so rotten.

It's only now aged nearly 34 with the right treatment that I am starting to take back some of those lost years. Keep pushing for better treatment.

I was on 50mcg and my endocrinologist said that it was barely treatment dose.

You need to get a print out of your blood results from your GP, you're entitled to them. Don't just take them saying your numbers are 'normal'. Find out what they are. Numbers are irrelevant if you are still feeling shit.

Do they test your T3? My brother was badly managed for years by the GP until he demanded an endocrine referral and got changed to T3 medication, it's totally changed him.

Get an endocrine referral.

I was diagnosed at 33 although looking through my notes the doctor thinks I started developing symptoms at 28 (when dd2 was born and I thought the extreme tiredness was 2 children under 2) x

godsake...rein, not reign in last post.

eandh.... i wasn't diagnosed until ds2 was 6 months old, they guess my thyroid packed up about 2 years earlier after dd ....I also assumed it was just small children, working mother tiredness. So diagnosed at 33.

I was diagnosed when ds2 was 9 months old.

Looking back I wonder if my thyroid had gone hyper after the birth of ds1 - the weight dropped off me and I was felt pretty on edge a lot.

My diagnosis was accidental. I was seeing a specialist for something unrelated and had a lot of blood tests done - the only one that was abnormal was TSH which was 89. I did have terribly dry skin, sluggish bowels and a general lack of energy but I was looking after a newborn and a just 2 year old and it was autumn and I was eating a lot of comfort food (didn't gain weight oddly) so could account for all of my symptoms through something straightforward.

The consultant was as surprised as me at the blood result and I was immediately referred to an endocrinologist. I was using DH's work provided private health insurance so I saw him within a week and he wrote the prescription for the medication at my first appt.

How are you getting on OP?

Hi sorry only just finding this thread again!!

Just had my blood results back from the surgery. TSH sitting at 4.92 and free T4 sitting at 13.1.

Apparently this is normal and the GP has signed it off as that the receptionist was telling me on the phone earlier this morning....strange though as I don't feel 'normal'.

I had the dose increased from 25mcg to 50mcg, it's been just over six weeks and I feel no different.

With encouragement from DH, I've now started a gluten free diet. I have read a lot online that this can help massively with people who have Hashimoto's.

Oh dear! I think we have the answer now.

As a person on treatment for Hashis, your TSH should be around 1 and your FT4 should be in the top 25% of the reference range. I think what your doctor is saying is that your results are both within the reference ranges and so are OK, which is really not right at all. They need to be optimal and yours are not. You probably also need vitamin D, vitamin B12 and folate, and iron all checking and optimising as well.

You do not quote the reference ranges (it’s always helpful if you can do this with lab results by the way), but I can already tell that your TSH is way too high and your FT4 is way too low, which will undoubtedly explain the fact that you still have symptoms.

Also, you need to be aware that in a person under 50 with no signs of ischaemic heart disease, the standard starting dose is 100mcg and published, peer reviewed research shows that starting at a lower dose simply prolongs the time it takes for people to be well. From what you say you have never been on a proper starting dose.

After six weeks on 50 and with those results, you should be going up to 75 now anyway. I can’t advise you to do that off your own bat, but if you do, you may feel better and you’d certainly know soon enough if it was too much.

I think now you’ve either got to read up and learn about this condition and re-train your doctor, or look for a doctor who understands that being within the reference range is not enough, someone who will work with you to increase your dose to a realistic level and help you to get to a point where you get your life back.

Also pop into your local branch of Boots and buy the BMA’s book Understanding Thyroid Disorders (or get it from Amazon for Kindle if you have one) That says clearly where your results should be – you could always show that to your doc and ask why there is one rule for everyone else and another rule for you.

Good luck. Keep posting and let us know how you’re getting on.

Thanks RockinD, was hoping you'd pop along and see this thread (or the other one I responded to today).

I feel really crap still, same as I've always been for years. I've arranged to see the GP for next week so will update again when I know more. I will explain that I would like the dose increased as I'm still not feeling well. Not expecting GP to wave a magic wand but I would like to try going higher and higher with the dose until I'm getting the optimal dose.

Will have a look in Boots for the book, thanks for that tip.

See how you go. Going up in 25mcg jumps until you get the right dose is the way to do it.

Keep us informed.

Irn I've just come across this thread now. I've got it too, diagnosed at 33 after nearly falling in a hypothyroid coma on holiday.

First off I'm in awe of the resilience you have to have coped with feeling so awful for so long! Before I was on the right level of medication, I can honestly say I've never felt so awful in my whole life and I'm very scared of ever going back to feeling like that - and you've done that for 10 YEARS!! Flipping heck woman!

The thing with levo, from what I understand, is that there are two issues with the dosage. 1. Is if your thyroid has completely packed up or is still producing something and 2. Your weight. In my case it's packed up, so there is a formula that my doctors (I moved country) have used and in both countries it has been the same. I think it's about 1.7 x my weight = dosage. So, if you're in a similar situation to me then you can see that 25 or 50mg is really not much use. Another point is that it takes a good few weeks to know if it's not the right level AND you're not supposed to bump it up too fast. My first dr was increasing it slowly and after 3 months there wasn't a big difference, so she did a bigger step and within a month I started to feel better - but it took longer to get it to where it is now.

Another thing is that my husband came with me to the dr at one point, in part because I was forgetting so much and I wanted him to hear directly from her that there wasn't an overnight solution. She found it very useful to speak to someone who could verify what I was saying - not because she didn't believe me, but because it was helpful to have his observations. Perhaps if your DH hasn't been to the GP with you, it might help if he came?

Also, my TSH levels need to be between 0.5 and 1.5 in order to feel ok. An endo explained to me at one point that the "normal" frame is essentially like growth charts for kids: they take thousands of people's' measurements into consideration and then take some form if average from it. That becomes "normal", but in order to have it, there must naturally be people for whom "normal" is not fitting exactly with the average (very tall families, very short families etc). So while your TSH is "normal", that doesn't mean it's where normal is for you.

I wish you a lot of luck and as much energy as I can spare in order to fight your corner.

The formula for figuring out the correct level of levothyroxine replacement in someone who has had a thyroidectomy is 1.6mcg per kilo of body weight. I’ve just done the math and that means that if you weigh between 10 and 14 stone, your daily dose of thyroxine is likely to be between 100 and 150mcg.

However, if you still have a thyroid, you have to allow for residual thyroid function, also the length of time you have been unwell and other things as well, so it’s not an exact science. At 10.5 stone (67 kilos ) I look a little over-replaced on the face of it on 125mcg, but it seems to work for me, so you can only ever use this equation to give you a rough idea.

OP 50mcg is barely treatment level. No wonder you still feel awful. Have they tested your T3 yet? You need to get that checked.

Update - returned to see the GP after being told my blood results were 'normal' as per last post....

I said I still feel rubbish, very tired etc etc etc...I asked if there is any possibility of increasing from 50mcg to 75mcg daily, he said there's a risk I may go the other way if I do this but he said if it's really what I want to do then fair enough he'll prescribe in 25's, and I can do it that way. To return in six weeks time for another blood test.

He says the symptoms of tiredness and lethargy are common presentations he sees regularly and that sometimes there's just no rhyme or reason for it...cheers for that That really gives me confidence.

I mentioned about possibly going gluten free and he didn't seem to have much knowledge on the link between Hashi's and gluten free.

RockinD the gist of it is the GP will not be willing to prescribe any higher than 75mcg because my results (TSH, and free T4) are within the normal ranges.

irnBru I am in exactly same situation as yourself diagnosed as hashimoto thyroiditis now on thyroxine still feel like death, I have some other odd goings on that are non specific. It's hard going some days.

Sorry to hear that hash you have my sympathies. Some days I feel really shit and struggle to cope.

Not had T3 checked yet. I did mention that I had checked out Thyroid UK who say that your TSH levels really should be around 1 to feel well, but the GP said that my levels are sitting within the normal range (he quoted the range to me) and so we continue to go around in big circles...I'm fed up, honestly.

The trouble I have found is different labs use different ranges of what is normal. In the uk alot of labs use > 10 to mean the thyroid is completely hypo. But as said by many up thread you still have symptoms. What is the normal range for yourself isn't necessarily normal range for myself.

When dealing with hashimoto thyroiditis you have the added trouble of our thyroid swinging between hypo and hyper. The endocrinologist I have seen seem to specialise in diabetes and not thyroid. So effectively arent any more use than the GP.

Have you thought about seeing a rheumatologist? As many with autoimmune thyroid disease will usually end up with another autoimmune disease. Thankfully I am now seeing rheumatology as I tested positive for ANA which as I understand isn't common in thyroid disease.

Maybe an idea?

Can't argue with anything kormachameleon has said.

That's it in a nutshell.

Thanks korma. Getting tested for coelic disease in six weeks, so will be interesting to see what the results turn out to be. I do feel down about all of this, but by following some advice as above I should get on track. It's better to help myself than wallow in misery, I suppose. Thanks again.

Korma hits the spot again.

Don't be me either. It's taken me ten years to get well and I have done all the work myself, up to and including researching in medical journals and printing off the relevant peer-reviewed academic articles and taking them to my GP. Fourteen endo appointments over a four year period achieved nothing except to make me more ill than I was in the first place!

Sad but true, in this situation you cannot rely on the NHS to get you well. It's down to you.

Try the 75, for at least four weeks, if at the end of that time you feel as if there is more to go, up it to 100 and see what happens. You'll soon know if you're taking too much.