Feel like standing outside Downing Street dress... - Thyroid UK

Thyroid UK

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Feel like standing outside Downing Street dressed as a zombie

VanessaB profile image
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Feel like standing outsideDowning Street dressed as a Zombie under the NHS this is what I feel like. Husband and I looked into going private but there is no way we an do it there s just never any money left over in the pot we can't even cut back any where as we're back to the knuckles as it is.

I feel so angry that there is treatment out there but we're unable to access it or even try it effectively keeping us neither living or dead.

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VanessaB profile image
VanessaB
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Throid profile image
Throid

Feel for you I really do, treatment for many with an endocrine problem (it isn't just thyroid!) is appalling.

The only way forward is to self treat in my opinion but to that safely and effectively you need money to get the tests done. Is you GP any help in that regard?

We simply don't live with a thyroid disorder, we exist

editfmrt profile image
editfmrt

What a horrible dilemma for you my heart goes out to you. I can empathise with your thought about petitioning outside Downing Street and have even wondered if we all turned up in huge numbers with placards what impact it would have!

Your anger is totally understandable and justified.

Perhaps there are other options?

Obviously, finances play a massive part so if you cannot under any circumstances fund private consultants, you might have to consider alternatives:

1. Change your doctor - only time will tell....move on

2. Try a different approach with current GP - may take drastic measures saying you will try number three and hold them responsible for forcing you.

3. Go it alone with careful self monitoring and support from fellow sufferers - last resort.

My sister's journey may help and there are a few people very recently who have posted on here about their remarkable improvements with a combination of strategies to change their treatment without paying for private consultants. Hopefully, they will post on your blog.

My sister doesn't have unlimited funds but she did have enough to visit Dr S and Dr P. They were both great but my sister has such a mistrust of everyone and is so confused and desperate that she could not see the wood for the trees even though I was helping her.

Simply, she could not bring herself to give their suggested regime adequate time to see improvements. In short, money was not the answer in her case. I had to continue fighting the NHS system to change hearts and minds.

I won't post too much on here about how we have worked through this because I think this is an open post - who knows if big brother is watching.

Nevertheless, although you seem to have been fighting the system for so long, I wanted to encourage you that it can be done.

My sister is now on T3 through the NHS and starting to show signs of improvement for the first time in seven years. The war is not won with one battle so I don't think all her troubles are over but I am determined not to let this go unchallenged.

If you have an advocate to support and believe you - all the better.

Don't give up - you can get there. I had patches where I didn't think I could keep fighting on her behalf because she has been just as challenging as the NHS lol but it has been worth it.

Take care xx

debjs profile image
debjs

It is a real fight and I was shocked at being on the receiving end - worked for NHS for 38 years! It is hard to fight when you feel so unwell. I found it helped to take somebody with me to appointments - they seem to be a little more cautious with what they say when you are not alone. I am lucky to have a good GP who has been very supportive and referred me to Dr S. and is happy to prescribe Armour but know others are not so lucky. Even if you can only afford a couple of visits it would be worth it. i have now lost my job due to ill health so visits will be dificult but I have had explanations, advice, a plan of action and hope which has been sadly lacking from NHS appointments. I have also found any changes take a long time to manifest and have had to learn patience!! I found printing off info from TUK and taking to GP appointment helped. Think she dreads my visits with a handful of paper! Keep fighting though I know its hard.

I'll join you, except I wouldn't have to dress like one, it's natural. hugs Jane :D

VanessaB profile image
VanessaB

I don't really have much choice about doctors my husband is in the Army so we moved from a lovely GP's in an affluent lovely area to one where you can only take the one within your boundary.Our married quarter falls into the boundary of one the most deprived areas.The surgery also doubles as an walk in centre there are all sorts of characters there my friend had her purse stolen whilst waiting for an appointment :-( So I think the docs are just stressed they have more time sick than anyone if I take any paper they never even look.

They even took the alcohol hand wash out because people kept drinking it...

Any other chronic illness where it is ongoing there are clinics and symptom management but as docs don't believe we have any symptoms there is nothing...

It just royally sucks it seems like I'm really negative but in truth I'm very positive I'm very positive I can become whole again,and positive it will be without my doctors help but the fact is it shouldn't have to be that way.

Reading the positive stories fills me with happiness and others despair I feel with my heart that is the good thing about this site together we are one.

Big hugs back to you all and thank you all for such kind words and advice

Xx

Jane :-) know how you feel here's hoping father Xmas brings me some super potions so I don't look such a haggard old bag :-)

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