My thyroid/adrenal problems

OMG I can't imagine the trauma of having eye surgery while conscious. It's up there as one of big fears. You've been through a horrendous ordeal this week. My lord, the stress you're enduring. My heart goes out to you.

Thank heavens for your lovely neighbour driving you there! I hope it's not horribly painful, and that it heals up well.

The people at the thyroid forum have been wonderfully helpful. It's such a relief to feel supported with it. Thank you so much for directing me there!

Take good care of yourself. Take it easy, let your poor eye - and nerves! - heal up.

 

Thank you @Squeezy for your kind words. Yes, it was pretty horrible on the day, and I had to go back on Wed for a post op check which was OK as far as the op was concerned but they are still worried about the high pressure and increased the strength of the drops I have to put in.

I hope this issue will be temporary as I hate the thought of needing such things indefinitely. The side effects of the drops are a bit troubling too - BP higher by more than 10 points at times, but luckily my BP is on the low side. Also getting some spells of heart rate going up which is uncomfortable. I rather fear that taking the T3 makes that issue worse for me so I am dropping the dose back down a little for now to see then how it goes.

I am so glad that you got to the thyroid forum OK. I had a quick look in yesterday after you said that and saw your post and all the helpful replies. I also 'talk' to Christina who is Autoimmune on the forum and she has lots of useful info and is very supportive. Oddly, I thought that the Mexican site she used was the same as mine, but I see it isn't! However I have checked mine out a couple of times now and it is efficient and safe, and I got it through this thyroid forum originally.

 

Don't know if I missed this in this thread, but have you looked up the Broda Barnes Foundation: www.brodabarnes.org

Dr. Barnes was a physician who studied the thyroid and rest of the endocrine system for many years. This organization might have some info you haven't come across.

I hope you get some resolution to your questions!

 

Thank you @DokaGirl for your post.I have heard of Broda Barnes but never really looked further into the organisation, so I will take a look at their webiste. Unfortunately my energy has not been great this year since I had the last eye operation - seemed to take me further downhill, but at least my eye is stable and my sight is still good.

 

We have more than enough problems with ME, without comorbidities. Hope your eye heals soon, @Agapanthus!

About 25 years ago, (wow, how time flies when you're having fun!), I saw a GP who treated for a thyroid condition called Wilson's Syndrome - NOT Wilson's Disease, which has something to do with copper - can't recall what - it's been too long.

Eventually, this therapy did not seem to help me. It uses T3 only, at 12 hour intervals. At least that's how my treatment was done.

I've been hypothyroid for over 40 years. I use both Levo and desiccated thyroid, and have done for over 20 years.

When I was first diagnosed, I think they just did a T4 test, not a TSH. My T4 was significantly out of whack, and I had lots of hypothyroid symptoms. As you know, some of the hypothyroid symptoms are similar to ME, which is why one route I went when first diagnosed with cfs, was to try and find out if it was really hypothyroidism gone awry. I didn't come up with anything on this, despite lots of research and costs.

I also looked into low dose hydrocortisone about 25 years ago- took it for 2.5 years - no help, no harm.

Increasing it on GP's advice re a cold, did improve my overall pain, but the increase should only be very temporary, according to GP.

 

Interesting to hear your own journey @DokaGirl which is a lot longer than mine. I must say that when my own health declined, that I did not tie it in with the thyroid condition at all, as I had improved so much once I went onto Thyroxine, but this was only a few years later and was during the menopause, so I put it all onto the menopause at first. However the truth is that people's energy doesn't fail so badly during the menopause as normal. I was only in my early 50s when this began.

In my case, but the time I did look into the thyroid side of things, my T3 level was pretty low. I am on Liothyroinine only now - it's hard to know how much difference it has made for me, as I am 5 - 6 years on now and was not great on the T4 only. I think I would be worse on that. If I had tried NDT at the outset maybe that would have been better, but it's not easy to obtain in the UK other than buying it in from outside the country.

I have heard of Wilson's syndrome, but I gather that it is not an accepted diagnosis by mainstream medicine (not that they get it right by any means!).