Has anyone had a similar experience?
 

Hi

I'm new to the forum and it looks like its incredibly useful and a positive place to be.

I have Graves Disease, which started with a Thyroid Storm about 3 years ago. I have been using block and replace therapy for about 2 years.

Then in June I started to be clumsy... I tripped up several times and had to change my footwear (I am an English size 5 and now have to wear flat size 8 big comfy Ugg type boots).

My ankles became very swollen and my leg muscles became weaker in my right leg.

I went on holiday to a hot climate in early August and the symptoms became a lot worse. The ankles became extremely swollen, and then I started getting severe cramps in both calves as well as spasms.

I also started getting electric shocks, pins & needles, burning calves (which became ultra sensitive to draughts and cold - feeling like being cut with knives).

It became worse, with the weakness progressing so that I now have to use a walking stick to get upstairs/downstairs, and sometimes when walking on the flat as well.

I also notice that I have problems with my eyes (occasional double vision, but often sore/burning and swollen), my throat tends to swell up but not be painful and I get short of breath. I also have pains in both my arms (they are heavy and achy) as well as brain fog. I am far clumsier nowadays, dropping things, walking into things and missing my mouth (its a big enough target, as they say!). Sometimes when my throat swells up, and my Uvala swells up the only way I can breath is to lie on my back or to walk with my head held back.

I have recently been back to my Thyroid Specialist who has taken me off all meds to see what happens. He diagnosed neuropathy as being present, and was not sure what was causing it but is hoping time will show the cause. Since then the pains have come and gone in intensity, varying from being a consistent 2 on the scale up to attacks of 10.

I've been signed off from work at the moment and am not sure what is causing the peripheral neuropathy.

I went to see my Osteopath today, who I see on a regular basis to prevent back problems (I was born with a mild curvature of the spine, which is very much under control nowadays). He suggested it may be Myasthina Gravis.

I am afraid I will lose my job if I can't get back to work soon (they pay full money for 6 weeks, half for a further 6 weeks and then I don't know what happens - but definitely no pay). They've been very good, but obviously it can't last forever.

Anyone who's had anything similar and has found a way round it, or at least found a definite diagnosis to work with, would be great. Or any tips at all.
I've looked in the stickies and will be booking with a nutritionist so that I can get started on some high strength multi-vits, etc.

Many thanks

Sue

It might be thyroid, it might not...
 

Because for all thyroid issues can do to us, they can also mess up a clear diagnosis. Finding out WHY this is happening isn't as important as TREATING what is happening.

If it were me? I'd be on the phone to my GP and any other docs [likely tho not the Endo as his feelings mite be hurt?] you know and get names! Then see if your insurance includes those neurologists' names in their plan!
See a neuro ASAP, Please! Why? Because your throat is starting to have issues and your vision is being affected!
Most Neuros have waiting periods to get seen [maybe your GP has an 'in' with some neuros?] and when you make the appt get yourself on a cancellation list. That's how I played it when I made my first 'second opinion' appointments [the first neuro was a total loss]..and I got to see competent docs w/in ten days of calling rather than the 6-7 weeks. IF you have a teaching hospital nearby it could be even better...but pick a number two or three doc at the hospital [the #1's are too 'busy' to really pay attention] and get in start getting tested and go from there. Another roundabout way would be to try Rheumatologists. Lots of neuropathy issues overlap in these two fields and that's why it's hard/harder/hardest to diagnose specifics.

As for thyroid? I'm the opposite, I've Hashimotos' non-functiong thyroid. I believe, tho it's not proven, that it too became Hashi's [from hypo-t] shortly after the onset of my immune neuropathy...your swollen feet were key,in that, just like mine - going up 3 sizes with the swelling. Not a fun event at all!

I hope this all helps, and welcome to NT! Keep us all up to date on how things are sorting out, please. Good luck Sue!!!! - j

Thank you
 

Thank you so much... I keep on going into remission like states, and then each time it comes back more severe... each time the pain gets worse, and the Drs and Endocrine specialist will not give me any pain control other than mild/medium.

I'm doing my very best to keep positive - I know it can get better - but sometimes the pain just gets so much I don't know what to do with myself.

Thanks to your reply I feel more confident about pushing for a Neuro appointment - I've tried 3 times at my Drs surgery, and they all just say wait and see if its the thyroid. It gets very, very frustrating - especially as I can't even take matters into my own hands, get hold of some money and go to a specialist myself. In the UK you have to be referred by a Dr and they won't do that until the thyroid has been ruled out.

I'll try again on Monday when the surgery is open, and if I don't get anywhere I'll just go and sit up in A&E.

Thank you so much for your support and good luck yourself.

Very best

Sue

Where do you live?
 

If you are in a metropolitan area, finding another endo for a second opinion shouldn't be hard. Just check out your local hospitals' web sites and under the 'find a doctor' section [which is often hard to find itself] look up endocrinologists. Then 'Web' up their names and/or practices.....if you like what you see it's worth a shot?
If your are in Canada, Australia or the UK it is likely to be harder. Depending on your circumstances [finances] it just mite be worth it to find a private practice and get that new look at things. Otherwise you are going to have to find out how their game is played.
The two best web sites I've found on thyroid are:
http://www.endocrineweb.com/ and.....
http://thyroid.about.com/ This second site is useful in that it can and does go off on some tangents...and it pushes the sites' founder's books. But, it IS useful. I'm sure there are other sites or resources out there - I'd start with the NIH and see where they refer you to and check them out.
Between these two sites you mite be able to get a more solid handle on what's going on with you....and how it relates to neuropathy. It does, you know. Seems that that pesky thyroid starts a whole series of necessary chain reactions that are not just useful, but essential to our beings functioning well.
Unfortunately, it's not a body part that can be 'replaced'! :eek: YET....
At least [keep telling yourself this!], at least it's not Diabetes [Islets of Langerhorn & Pancreas]! One issue at a time PLEASE! Also, this kind of reading can turn your brain to mush if you try to read too much at once.. Take it in 30 minute to hour 'bits' so it sinks in better. Learning all the 'language' medically helps a bit too - in 'getting it'.
Sure hope this helps! Get copies of your tests [if you can, sometimes there's a charge] and then we all can refer you to web sites to help you interpret them. We're not docs here, just 'patients'! But, patients with a keen interest in self-preservation!
Get to work and :hug:'s! - j

I'm in the UK
 

Hi there

I'm in the UK... thanks so much for all your help. It sounds like you've become quite a knowledge in this area.

I will look at the websites over the next few days and take it half hour at a time, like you've suggested.

Thanks again, truly appreciate your help.

I will post an update - hopefully soon and hopefully a really positive one :wink:

Sue