Fingers crossed

Thursday I get my results of first blood tests since stopping anti thyroid meds (graves disease). Really hoping they are ok , dont want to have to go back o n carbimazole

[gabkad]

Wishing you all the best, Pipps.

[Hidden in reply to gabkad]

Cheers, got a feeling though going hyper x

[gabkad in reply to Hidden]

S**t.

Hey, Pipps, how's the restless legs situation? Have you seen the new movement disorders neurologist and is there any improvement with change in meds?

[Hidden in reply to gabkad]

How good of you to remember! No not seen Neuro yet but researched a newish very expensive treatment myself and pleaded my case with GP.He agreed yahoo! I am doing soooo much better on it , still go to sleep very late but am getting 6-7 hours of good sleep which is amazing.Get some breakthrough but mild in comparison to before.Some people onntrials are getting good couple of years before augmentation sets in and you have ro change meds so hoping.Thanks for asking Gabs.How are you ? Not sure of your thyroid issues sorry ..pipps x

[gabkad in reply to Hidden]

I've just sent an email to Dr. V.S. Ramachandran (neurologist, scientist) if he has any suggestions for this condition. He's developed all sorts of simple treatments for things like phantom limb pain and things like this. If he replies I'll send it on. (Except in your case, it's both limbs so that's a complication.) He helps people to rewire the brain. And this thing is probably a brain thing. Right?

You wrote before that unlike others, heat helps.

[Hidden in reply to gabkad]

Thats very kind of you thankyou! Yes its a brain thing , its a fault with the dopamine receptors.Meds boost dopamine supplies.Dopamine receptors need ferratin but some reason with RLS we cant utilise thecferratin.After a while on the meds-which are Parkinson meds - they start to overstimulate the receptors and a condition called augmentation occurrs.This is hell and gives you RLS 24 /7 so then begins the weaning off, having a break then starting all over again !

[gabkad in reply to Hidden]

Well whatever you are taking if you can get 6 to 7 hours of sleep at night that is quite a miracle.

[Heloise in reply to Hidden]

This might interest both of you.

youtube.com/watch?v=_nA3TuW...(Not working as expected?)

[alangardner]

hi ya pips, just proves there is an end to that damn great tunnel .....yah girl you will get there .....alan xxx

[Hidden in reply to alangardner]

Ah thanks Alan just need the Graves to go in remission now and I will be a new woman,! Tall order I know lol x

[alangardner]

it will go there [ remish ] , your already a new woman -- when you discovered this site -- ....btw are you saying that your hightist or what ?...[ tall order indeed ] ....alan xxx

[Hidden in reply to alangardner]

Ha ha! I am the smallest in our family, but you never see a diamond as big as a brick lol x

[alangardner]

when you find one the size of a brick , a diamond that is , ....... just think what you have in yer hand ?????......

[Hidden in reply to alangardner]

Now who is being heightist he he x

[alangardner]

I hope your not insinuating that likal ol me is ???

[Hidden]

Me never! Meds are doing there job off to sleep , Goodnight ol boy (whoops ageist ) x

[KarenS2]

Fingers crossed for you - I came off in August and so far, so good.

[Hidden in reply to KarenS2]

Thanks Karen pleased you're doing well x

[madasahatter]

Fingers crossed for you some people are lucky I do hope you are one of them x. I am avoiding going for mine( post rai in August) cannot sleep and still cant stop vibrating so think mine is back.

[Hidden in reply to madasahatter]

Thankyou oh no hope yours isnt after going through RAI X

[Fruitandnutcase]

Fingers and toes all crossed for you p1pp1ns, good luck

[Silver_Fairy]

Good luck p1pp1ns!! Can I ask how long you have had RLS?

[Hidden in reply to Silver_Fairy]

Thanks, have had restless legs for over 30 years!

[Silver_Fairy in reply to Hidden]

Have you ever tried progesterone? Apparently, when progesterone is low, dopamine is too. Lots on the net about the link between the two and RLS.

[Hidden in reply to Silver_Fairy]

Hi yres thankyou I have looked into most rls related stuff, very active on HU rks forum, The problem is its not low levels of dopamine thats the problem -infact post mortems on RLS sufferers usually show higher than normal levels - its the inability of the receptors to utilise the dopamine, x

[glo42]

Everything crossed hoping that you will stay in remission and get your life back on track. I will come off the Carbimazole in November and hope that my overactive thyroid condition becomes stabilized for a very long time,...... no harm in "hoping" is there? Good luck p1pp1ns. I really hope it works out good for you.

xxxx

[Hidden in reply to glo42]

Thankyou Glo42, good luck to you too x

[Clutter]

Wishing you luck, P1pp1ns. My fingers are crossed.

[Hidden in reply to Clutter]

Thanks Clutter x

[snow31]

Wishing you all the luck and hoping it will always be in remission. I came off PTU (couldn't tolerate Carbimazole) in August and had by first results last week. Little bit out on some of my results but Endo says it's still in remission. Fingers crossed for you xx

[Hidden in reply to snow31]

Thanks snow31, glad you're doing ok x

[Hidden]

Thankyou all for your messages of support.As I continue to have some hyper symptoms its not looking too hopeful! I am ready to fight my corner to go back on carbimazole rather than RAI thanks to the info on this forum ! Will post results ..pipps x

[Joy333]

Fingers crossed for you pippins, really hope the symptoms you're experiencing settle down and your levels come back fine

[Hidden in reply to Joy333]

Thankyou very much x

[tilly83]

Hi Kim,

Do let me know how you get on..... my blood test came back (one month off carb) TSH dropped but only a little, T4 actually dropped from 16.1 to 15.9 and T3 more or less steady so fingers crossed...... see endos today..... have been reading about thyroid atrial embolization, has had some good results, far less intrusive, less likely to make you hypo and only one hour procedure...... might mention it today if needs must just want to avoid RI or major surgery both of which equal hypo... fingers crossed for you xx

[Hidden in reply to tilly83]

Good luck Tilly, How does your GP manage to get the labs to do t3 and t4? My GP has tried all sorts of wording on request form but it still comes back Tsh only is done? Pipps x

[tilly83]

Hi Pipps, well they did once do the TSH I rang and said because of that I wanted another test because the endos (I lied here, sorry but I guessed nobody would actually ask) and said they wanted T4 and T3 as I was on different regime - not block and replace. If they don't do it I just repeat the test and get the nurse to write on the form why I am having it again. This time the TSH only came back I said to find out about what happened to T4 and T3 or would have to re-book. The secretary chased results and surprise surprise they did have them..... it isn't nice to be pushy but these are people who aim to do minimum and keep costs down. I try and be very charming and do worry if they suddenly pull the plug but the way I see it is I am saving the money from long-term medication!!!!!!!! Just try saying on form that T4 and T3 must be done or you will repeat test. Best of British xx

[Hidden]

Thanks for reply Tilly.When you say you you rang/sooke to secretary etc do you mean at GP surgery or Endos secretary? X

[Hidden]

Hi mt blood result was TSH 1.4, nothing else done!

Discharged from Endo to GP for blood tests in future.Was a waste of time going today x