Re: Thyroid Thread - Part Deux
 

Hi there...I'll contact the only one of us without a thyroid... she's doing great from what I can tell!

Re: Thyroid Thread - Part Deux
 

Hi Popsical :)

I've been 'thyroidless' for 5 years now, and I would probably say that I'd do it again... but it really is dependent upon your personal circumstances. I had a huge multi nodular goiter, and as much as it was MY decision to have it removed, when the surgeon spoke to me afterwards she said it was the only option as it was so large and entwined. The surgery does not come without its risks though. My vocal chord nerve was cut during the operation and for a while I didn't know if I would be able to speak again - that was extremely scarey and probably the worst part of the op. They also removed one of my parathyroids as that was swollen, which ultimately put me on huge doses of calcium for a while (I just take a regular dose now though).

Really I would say that the main issue isn't whether or not you're with or without a thyroid, its whether or not you're medicated correctly. Without a thyroid your levels don't flucuate, and so when you find that sweet spot you should be able to remain there! T4 only medication (Oroxine) wasn't the optimum medication for me and I am now taking 180mg Natural Thyroid (sometimes called Armour).

My main symptom both with and without the thyroid has been anxiety and it is definitely better now, but I think thats more due to being medicated properly. I have a friend who had graves and had hers removed and her anxiety has been far worse since - she did better being medicated for Graves, than she does being mediated for Hypothyroid (which obviously you are class as when you have no thyroid).

Recovering from the Op itself wasn't too bad... I had the operation late afternoon and left the hospital the following morning with a drip bag hanging out of my neck (nice look... it co-incided well with Halloween though!). I was driving probably within a week (the only restriction here is that your next is quite tight to move).

If you've got any more questions feel free to PM me - I don't come here very often but a friend of mine on here sent me a message to ask me to come and reply to you :)

Re: Thyroid Thread - Part Deux
 

Hi! All.
Thought it was time i updated.

Since my last visit it has been all down hill and a bit up hill on the health side.

Went back to the doctors three times with feeling tired - well extreme exhaustion and feeling very unwell- to the point i could not get out of bed.

I just thought my thyroid had kicked out and went to ask for a blood test to be done for the levels.

Was sent for blood test and a few extra as symptoms sent alarm bells ringing for the doctor.

After a week, results for blood tests came back - thyroid levels were the same and so had to do a special test on one that came back - which took three weeks.

Was called in and told that i now have B12 deficiency - which i shed a tear -
I now have to have injection in to the muscle every twelve weeks for life - which hurts like s--t.
After just two weeks from starting the injections last October, i have developed fibromyalgia - my bones and muscles hurt so much and am at the point that even lying in bed hurts if my body touches the bed.

I have to go so careful as not to hurt myself as the pain is so bad - well the pain is so bad i could not begin to explain.

The doctors say it is not to do with having the injections - but i disagree.

I know what my body feels like and the muscle pain is so severe after having the injection.

since starting the injections for B12 my salivary glands continue to swell and have been told they have got to be taken out - so i am now waiting for an operation to take the glands out.

The one thing i do not understand is - why do i feel worse for a week or two from having the b12 injection, and then a week or two before with extreme tiredness

I do feel quite frustrated with having these conditions, especially the fibromyalgia - I think it is the first time i have felt sorry for myself.

I go through stages where i feel extremely tired but keep going and can not go to bed.

I think i am trying to block out having these conditions by pushing myself to the full all the time - as in a way as not to be beat.

Re: Thyroid Thread - Part Deux
 

I have only just remembered you saying you were diagnosed with Sjogrens and doctors hadnt started you on treatment for it.

Sjogrens causes very painful and enlarged salivary glands - mine get huge and so painful. And the rheumatic pain from the illness is awful - I am on Plaquenil and steroids and it has made a huge difference to my quality of life. Sjogrens can dry your lungs out -I have terrible breathing issues if I lie flat and my lungs are so dry and painful.

I remember being quite shocked your doctor hadnt got you on any treatment and it sounds like the illness is kicking in. With regards to injections, I get really sick if I have them and can only just take the flu shot, so perhaps that is the reason about you being sick with the Vitamin injection.

Can you ask your immunologist to be considered for Plaquenil treatment - hard to start, takes 6 weeks minimum to work but a lifesaver. I didnt realise how sick I had become until I started it.

Big hugs to you :)

Re: Thyroid Thread - Part Deux
 

That's right! It wasn't long before the B12 that i was diagnosed by my rhumatologist as having Sjogrens.

they said they had suspicions that i had had Sjogrens for a long time - but still does not want to put me on any medication apart from the eye drops and mouth spray - which has a disgusting taste.

I go back in a couple of months , so will re aces my conditions with them and see what they are going to do.

They constantly keep a check for my lungs and all seems fine.

If as you say the muscular pain is cased by the Sjogrens and not the B12, then perhaps when i have the glands removed it might all stop - and i will be pain free:amen:

Re: Thyroid Thread - Part Deux
 

Dont think the muscle pains will go Im afraid, it might help the salivary glands but the general aches and rheumatic pains that come with Sjogrens are another part of this bloody horrible 'Gift that keeps on giving'

Be firm with them, so many of us get fobbed off, I had one nurse say to me 'Your dry eyes are menopause and Sjogrens is nothing but a mild inconvenience of dry eyes and mouth' :eek:

Keep a pain and symptom diary and see what he says about Plaquenil - I am so glad my specialist recommended it to me. I think I am on steroids for a few months but they have made such a difference to me.