Fighting back.

[hh46]

Looking for thyroid sufferers to fight back

Sick of being ignored? Treated like your mad? Given wrong and inadequate medication?

Let's fight them on the ignorance

[Hidden]

That's what I've been doing. Formal complaints have been made against 4 GPs who failed to treat me,

Everyone needs to do it but that's easier said than done. It's taken me nearly four years to feel well enough to compose something that isn't shouty or aggressive. You may of course insert your own words here!!

[rosetrees]

If I really do recover you'll hear the explosion across the country! So far I'm improved enough to be up all day and to go out occasionally. Off to see Dr P next week.

hh46 - what do you have in mind?

[shaws Administrator]

Thyroiduk.org has been at the forefront by informing patients that there are other medications which may help and that the TSH is not the 'golden' method of detecting. That clinical symptoms should be taken into consideration.

Lyn Mynott has been at the forefront by setting up Thyroiduk.org with the help of Louise Warvill (who doesn't have a thyroid problem) and it is a slow gradual process but we are progressing. Both these women and most probably their families have put in hours of unpaid time setting things up. using their own phones, computers etc etc.

The fact,too, that this has become such a successful forum for people to get things of their chests with more than 8,000 members and being informed about how best to try to get well. Also, you finally know you are not on your own - there is understanding and sympathy.

If methods of treatment have been in use since the 1960's, it wont be an overnight revolution to change the minds of the medical profession, although some are now treating patients with other than levothyroxine.

thyroiduk.healthunlocked.co...

Also the Scottish Parliament have listened to two thyroid suffers who put over their cases and it is now being investigated.

lhd.scottishparliament.c.bo...

[tavy in reply to shaws]

thank you for the info, I have learnt a lot from this site, it is very good to know you are not alone.

[Hidden in reply to shaws]

They have stopped me thi king I'm mad xxx

[Hidden]

Hello, We all feel your frustration and anger and I have certainly been there myself.

I can only second what Shaws has already said. These are some of the areas in which Thyroid UK has been involved.

thyroiduk.org.uk/tuk/index....

If you look at our main site thyroiduk.org you will see that we are not sitting still when it comes to educating both the public and medics. There are many projects in which we have been involved over the years, but the medical profession is VERY resistant to change and for the most part doesn't like to have their deficiencies pointed out to them. It is also VERY important to NOT be strident as some campaigns in the past (not ours!) have backed the establishment up against the wall and have done us all more harm than good.

Careful and considered approaches have, we have found, been the best way forward.

However, as with everything else our main stumbling block on our way forward is lack of money. As Shaws says Lyn and Lou work many and long hours for nothing.

We need more money to take our case forward in so many different ways, so if anybody has a sugar daddy or knows a lottery winner or has any other legitimate source of large sums of money please point them our way. YOU can be sure that we will NOT give up on you.

Meanwhile letter writing can do no harm, but my experience has been that our complaints disappear into a large black hole.

Jane x x

[Hidden in reply to Hidden]

LIKE

[Hidden in reply to Hidden]

Actually here's another thought. If you don't know the aforementioned sugar daddy or lottery winner you can help right now by donating just a very small amount here:

thyroiduk.org.uk/tuk/fundra...

or here

thyroiduk.org.uk/tuk/fundra...

Even just a very small amount from everyone who uses this site would help us to make some real strides forward.

Thank you. Jane x x

[rimington]

Hi, I have been thinking for sometime if there is a television documentery type story here. I have half heatedly tried to find a reporter to get in touch with. Maybe that is too much but when people are being admitted to psychiatric units etc. getting divorces loosing jobs feeling

They want to end it all not realising there is a medical problem coupled with inconsistent treatment.? This is just my feeling.

My G.P knows of Thyroid U.K and said it was a good site by the way.

[Hidden in reply to rimington]

Here's a link to Suzi and Dr Steele

thyroiduk.healthunlocked.co...

Also there's web of stories via the main TUK site too

thyroiduk.org.uk/tuk/get_in...

Lyn has been quoted in several newspaper articles too.

I'm glad your GP likes the site! We must be getting somewhere! Jane

~ sorry web of stories here......(not just ours) ~

webofstories.com/channels/5...

[blackqueen65 in reply to rimington]

I wonder if Michael Mosley would be interested, he's done quite a few medical documentaries. bbcaustralia.com/horizon/mi...

[erfathyroid]

i have been ill now for 12 years. doctor at london hospital decreased my dose of erfa thyroid to go with blood tests . t.s.h.1. this made me very ill, in wheelchair. increasing dose now up to 3. m.g. had 3 weeks feeling great. now back in hell. increased to 31/2m.g.when will this end. feel very alone. can anyone help.

[Hidden in reply to erfathyroid]

Erfa,

I'm so sorry to hear of your plight, and have every sympathy with you. You will get way more responses to your question if you post it as a question with a title. I fear it may get lost on this thread.

Jane x x

[Heloise in reply to erfathyroid]

erfa, that is terrible. I don't know exactly how this works but can you change your GP or the office you go to within the NHS? I think others have done that. Maybe the next one will try to help you. It is rare that anyone ever needs LESS Erfa after so many years.

[erfathyroid in reply to Heloise]

heloise. no i had increased up to 3 m.g. no improvement. went to hospital. they said i was t3 toxic. put me back to 90m.g. i have had to start again. now back to 3m.g. have this week, increased to 3.1/2m.g can you tell me how long you stay on over 3m.g. stayed on 3m.g for 6 weeks . hope this makes sence. 12 years on . still trying to get right.

[Heloise in reply to erfathyroid]

erfa, I can't make out your dosages. I took Erfa and was on one grain, 60 mcg. each day. I can hardly believe you were t3 toxic. T3 has a half life of twelve hours which means in a couple of days, it is out of your system. Do you realize only a tiny portion of your Erfa contains T3, the rest is T4. I guess we only need a tiny amount of T3 in order to supply our daily needs throughout the day. I'm generalizing.

So I can't make a lot of sense out of what has happened to you but would suggest you divide your dose and try some of it at bedtime.

In your first sentence, are you saying you were increased to 3 grains and later put back to 1 1/2 grain. That is a big increase and a big drop. I think two weeks' trial of any change in your dose should be

enough to tell. I don't think you should continue for 6 weeks if you don't feel well.

[erfathyroid in reply to Heloise]

it is good you only have to take small dose. i cannot go by blood tests, i was worried that because i was not getting any results, there was something else wrong. big mistake to go to hospital. they decrease my dose down to 90.mg. which put me in wheelchair. very weak and ill. t.s.h 1.0. all i can go by is temperature. now worked my way up to 3.1/2m.g. 4 days ago. temps went up for 2 days. now dropped. 10th morning temp36.2 pulse 82 . 11th 36.6. pulse71. waiting game. i have always taken erfa in 1 dose . 7 am. felt better last 2days. see how i go, . what do you think.

[erfathyroid in reply to Heloise]

sorry got temps wrong 10th 36.5. pulse84. 11th. 36.6 pulse. 71 this is morning resting temps.

[Heloise in reply to erfathyroid]

Lately it seems the adrenals are more indicative of body temperature but I don't think you could take such a high dose if your adrenals were low. I assume you are taking 3 1/2 grains of Erfa and others have done the same so not common but if necessary...

[erfathyroid]

thank you.

[vanessa2]

So what's the plan.

[hh46]

Looking into a few things will get back soon x