ausi dream

Is it possible for me to request having my thyroid removed? would they do that, if asked? And would it stop my body coming down with disorders once removed?
As i still believe that is whats causing my body to come down with one health disorder after another, it has been on going since the day i was diagnosed with hereditary underactive thyroid.
I keep wondering weather it will come to that when i go for the scan and biopsy! But i suppose glands and lymph nodes are not in the same criteria!

TiddlyPom

Do you have Hashi's?

ausi dream

Yes i do Tiddlypom.
Went for my Ultrasound this morning and did not need to have a biopsy as it all looks like it is my thyroid, apart from mumbling something about my gland.
Will find out about it all when i go to see the consultant tomorrow afternoon.
Said my thyroid was very small and wanted to know if i have had my levels tested.
I have my thyroid levels checked once a year.

LittleKittyCat

Had my test results today. All normal so I have no idea what is wrong with me. I think I am going to go back to the GP again and ask to be retested again.

ausi dream

Went back today for all the results of Ultra Sound and biopsy.
Biopsy was not needed though!
Apparently it seems to be Salivary Gland Stones.
So have got to go back in two months. Which they say will give me time to think about having a procedure to try and drain it and some thing else which i could not quite understand.
Am in quite a bit of discomfort after coming back from my hospital appointment. They had to push around in and out of my mouth to feel the gland.
Was also told to put lemon juice in all my food as this helps to make saliva in the mouth and prevent the stones from coming. And to drinks lots.
Am feeling extremely tired after the last couple of days. Am going to have a now.

ausi dream

Just an update as i have since been to see my rheumatologist consultant since last posting.
Apparently the blood tests show my antibodies are not right and i have been diagnosed with Sjogren's syndrome.
So that will account for all the trouble i have been having with my glands in my neck and swallowing food.
lupus was mentioned for the antibodies. what is know as overlapping my scleroderma.
More blood tests later!

I must say although i have hashi Thyroid and all the other conditions i lead a busy life style and travel a lot too.
I do not let them stop me doing things, and push my self to the full.
As my husband always says " it could always be worse ". Which i must say cheers me up when i have a low thought about it all.

ausi dream

Hope all goes well for you!
It is well worth getting retested for your Thyroid again as it took two years for them to actually find mine under active.

It was going over to account for the under active, so it was not showing up in the blood tests properly.

All the best!

paulry

That's good that you have a diagnosis for your symptoms and things are under control for you. It's very true what your husband says. All the very best to you

TiddlyPom

Could always be worse that's for sure. Glad that you're getting to the bottom of all this. I seem to remember there was a Sjogren's syndrome sufferer on the UK about.com thyroid board if you're wanting more info.

Popsicals

Hi all

I have been trying to read through all of this thread - but it is soooo long - but very informative. I just wanted to post as there are alot of people on here who have a huge amount of knowledge about the thyroid - I have read 5 books since diagnosis, but still get a little confused. Sorry for gatecrashing your thread. My story:

I was diagnosed with Graves about 7 years ago and took meds for 3-4 months and then it all appeared to fix! Although I did have secondary infertility for 9 years so wonder if it has always been lurking in the background! I believe my thyroid problem followed the delivery of our son.

Anyway, I missed a period about 3 months ago and it appears the thyroid problem is back!!! My blood results are as follows:

TSH - 0.01
Free T4 - 26
Free T3 - 10.1
TSH Receptor Antibodies - 9.8
Ionised Calcium - 1.28 (normal range)
PTH - 3.2 (normal range)

I had a FNA (biopsy) as I have a lump 2.1x1.8 on my thyroid - they cannot palpate this and I do not have an enlarged thyroid or any eye problems - the FNA was inconclusive - I have had scans and a radioactive scan (which picked up the lump on my thyroid).

Anyway all of these tests have cost me in excess of $3000 after my medicare refund! I know its a small price to pay for your health, but eventually I have an appt that has come through to see a different thyroid specialist for initially a private consultation but they have said I can transfer to the public system once I have met with him and he will still be my contact. I have 2 choices now - do I go for another FNA or do I just go and have the thyroid out? There is a lump and Im wondering if it is really worth taking the chance. I know I will worry about whether it is something sinister, especially as I have 2 small children

I went to see a specialist yesterday regarding removal of thyroid, which is offered to patients with reoccurring graves. He was very good and made it sound so simple - but I would like some feedback from those that have had a complete thyroidectomy and how they feel now, whether they would (given the chance again) keep or remove the thyroid?

Thank you to anyone who can help me with their personal opinion.

Thank you in advance.

Popsicals xxx

TiddlyPom

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

Mrs Jackaroo

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

ausi dream

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.

Cheetah7

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

ausi dream

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