Thanks Lara & MrsD for your concern.

I did get copper done, along with zinc, (but not zinc/copper ratio) - I asked my GP for the Zinc test but she refused to order it giving me the excuse that she thought it was a test she wasn't authorized to order. I think we both knew that wasn't the case but I didn't push it. She was probably somewhat embarrassed because she was the one who had prescribed the zinc, was supposed to be monitoring me and didn't know it could be toxic until I told her! We had actually twice reviewed my continuing the zinc during the 2.5 yrs and not once did she suggest stopping it. Her knowledge of Addison's is minimal and I'm guessing she thought my depleted immune system needed it.

I had the tests done privately (yet again!), but unfortunately not until 5 days after stopping the zinc as I was pretty unwell and not thinking too clearly. Both tests came back within the normal range. I don't know if the 5 day wait was too long and the levels had stabilized and therefore any excess or deficiency was corrected. So I really only have the symptoms (and subsequent improvements) to go by.

I spoke to the pharmacist about it and she only had even a vague knowledge of possible toxicity but did agree that the warnings on both the labeling and the data safety sheet on medsafe (NZ Govt. drug info website) were inadequate. That's the complaint route I'm going down to follow up. Unfortunately without supporting clinical evidence (ie: lab results) filing an Adverse Events report would be a wasted effort.

MrsD - I still intend to supplement with B12 to get my numbers back up to your recommended levels but I'm doing the "change 1 thing at a time and observe" routine. I also have another big change I need to make within the next few months - stopping HRT (tapering). What would you recommend the minimum time I would need between starting B12 and then reducing HRT? - I really need to do this over our winter - summer is too hot (ie next few months) Many thanks for any suggestions.

I'd do the B12 first... It is so critical if low. You can always go off HRT anytime.

Okay – so I finally got to see a neurologist yesterday - from others descriptions of problems they had with neuros I was somewhat apprehensive. I decided to take a 'sit back and see' approach rather than launch in with my own research and opinions. Fortunately the doc (resident neuro) was a young guy and one good thing I can say is that he did listen and didn't dismiss my concerns (or most of them) out of hand. However the referring Endocrinologist had only mentioned in her report that I was having problems with loss of function in my left hand – nothing else about PN, nerve pain, cognitive dysfunction, headaches, insomnia, etc. and very little history. I managed to include most of my symptoms in the conversation during examination (reflexes, trigger points etc.) and he did write them down but I suspect I overwhelmed him with the diversity and complexity. At one point he ran off to consult a more senior colleague.

One question I asked was if it was possible for Addison's Disease to cause autoimmune PN – similar to Sjogren's, RA and Guillan Barre. Although the neuro said he'd never seen it (AD is rare) it was probably feasible. So I still don't have a definitive PN diagnosis or cause but it seems autoimmune PN from Addison's Disease may be likely. He said because I had so much going on health wise it would be difficult to determine a specific cause. Hence no further testing (earlier EMG, nerve conduction studies and MRI were negative) but I'm now on the 'books' so to speak. Unfortunately the cognitive symptoms which affect me day to day weren't fully considered – I think he wasn't prepared for a patient with so much going on and because I presented as reasonably lucid he just said he couldn't give any explanation. While I didn't get too many answers I am pleased that at least most of my symptoms and concerns are now on record.

I was offered Gabapentin for pain during flares but turned it down for 2 reasons: 1. I have a history of adverse reactions to several medications and am reluctant to try new ones. 2. my pain is currently mostly bearable and as I'm very limited to what pain relievers I can take that don't interfere with Addison's meds thought it better to save until really needed. For now I'm going to keep monitoring, managing and learning.

To everyone on NT who has followed my journey and given advice, suggestions, support and encouragement a huge THANK YOU. There have been times when, although it may not have been obvious, I really thought I might “fall off the edge” and just having this welcoming place to come to has helped keep me sane and calm.

P.S. MrsD - starting B12 tomorrow

Hi bluesfan,
I had been wondering about your long awaited appointment, so thanks for your update.
Take care there!

Thanks Lara
Yeah - considering it was the public health system I didn't think it went too bad - will wait for the report to my GP to see how much he really listened.

Bluesfan,

A mostly positive day, I would say. But do wait for the report to your GP, which I hope tallies with your experience.

I believe you are following the right course for yourself regarding your meds. Keep a little tucked away in reserve, just in case.

Dave.