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Discussion Starter · #1 ·
Just a reminder of a common problem that often goes undiagnosed because docs don't run the right tests. If you strongly suspect you have symptoms of an underactive or even overactive thyroid and yet your TSH is fine then make sure your doc tests for anti-thyroid antibodies and also T3 & T4.

A very good friend of mine has had symptoms for a couple of years, but they became extremely troublesome the last few months. She had classic symptoms of hypothyroid and a strong family history. Her TSH came back fine and after we spoke she decided to go back and pressure her GP further. He (luckily) was open to the suggestion of doing further testing on this and a whole host of other things. Everything (and I mean everything) came back fine, TSH smack bang in the middle of range for a second time, but............. anti-thyroid antibodies were very high.

Needless to say she is off for a radioactive scan and then probably an Endocrinologist. He only did all this after repeated visits of her complaining of her symptoms and the fact that she ate like a bird and was still putting on weight and was also sleeping her life away. On the sleep part I looked good some days as opposed to her :lol: and we both thought that was alarming :wink2:She's had lots of muscle aches and pains and constipation too, mood swings.

There were other times when she had a lot of anxiety, and trouble sleeping, something which she is not prone to as a rule, so that would be her thyroid kicking back the other way for a little while.

Pays to persist.

love
Lily
 

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An excellent reminder Lily,

I was so shocked years ago when my Mum's thyroid condition was eventually found (she has hashimotos like me). By the time she found it the doc said she was actually pretty lucky not to be in a coma.

I was far luckier in that thyroid function tests including T3 and T4 are actually fairly routine here and my thryoid problem was picked up years ago and has been well managed since.

Katharine
 

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Just wanted to ask what sounds like a daft question.

Why dont they run the anti thyroid bodies test in the first place if the clinical results work in diagnosis>

I do not understand why?

Nx
 

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Hi,
I to have wondered that same question, Nicky.
My old GP ran the anti thyroid bodies and it came back on the low side of normal. He didn't do a thing about it though.:mad:

My new GP saw that my T4 came back low, so he ran some more blood tests. He upped my thyroid med until it was in the high side of normal. It did help with my fatigue. I felt like I could do more during the day. I still get fatigued, it didn't take all the lupus fatigue away.

If you want to read more about T4 here is a web page that explains it pretty good.

http://www.labtestsonline.org/understanding/analytes/t4/sample.html

Take care,
Lyn
 

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Discussion Starter · #5 ·
Hi Nicky,

I think it comes down to cost and ignorance probably who knows :rolleyes: It's such a common condition in middle aged women and it's often blamed on the dreaded MENopause ;) like so many other things. TSH (the first test they usually run and the gold standard for years) is cheap and easy so if that's ok then often won't look any further.

BTW Lyn
her T3 & T4 were ok too when tested a second time, but seeing as she is having significant symptoms they will probably medicate her, she will find out tomorrow.............pity them if they try to say they won't :rotfl:she's not easily fobbed off. But I do feel for all those out there who either don't know this or have difficulty convincing a doc to test, I suspect that there are many undiagnosed out there.

love
Lily
 

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It is very true and this is my story about it.

My T3 and T4 showed overactive thyroid. I went in for the radioactive scan and it showed overactive. The doctor there I distinctly remember saying "you cannot count on the blood work but this test is as realistic as it comes and your thyroid is overactive." So from there I went to the doctor for thyroid and this doctor said you need to go see radiologist and get chemo pill to kill off the thyroid. Horrified, I went to the radiologist. Radiologist looked at results, blood work, etc. and said he would not do it and that I should wait and see how it works out in the future. If it still comes back that way, etc. etc. So with that, I went to Boston, MA and was seen by another thyroid doc who did more blood work, etc. and it came back fine. She suggested "watch and wait" and said that it seems my thyroid is off and on and off and on.........why? no clue?

So when I brought it up later on after a year or so, they rechecked blood and it was fine. I asked my gp "what happens about the actual scans I had and he said blood work doesn't really count as much? My gp said if it was low or high, it would show in the blood work and dismisses it.

I still really wonder, can my thyroid still not be functioning properly where the test showed it was not? They don't seem to care and just look at my bloods for it now. Also say all Lupus my symptoms.

Hmmmm.......
 

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Hi All, i havnt posted on here for sometime as i began to think i was loosing the plot and maybe there was nothing wrong with me...........until today, when eventually after 12 years of complaining of This and That i had a phone call from my GP about my blood results.

About 6 weeks ago i was so down due to joint pain, fatigue and my eyes etc, they ran a thyroid test which came back as "underactive" they then decided to do the antibody test which today came back very high so tomorrow i have an appointment about starting medication.

What concerns me is last June (2007) i had a Cornea Transplant due another condition and my eye consultant has been scratching his head about why it's going wrong (so dry/not healing and no vision) until a few weeks back when he said he thought something else was attacking my new cornea (ie autoimmune disease).

My gp said i need to go back and see my rheumy before my next appointment's due for further tests as they think it's attacking my cornea to, i'm so worried about the damage that may have been caused over the years eventhough i've been complaining yet no tests were ever done.

I also had Necrotizing Fasciitis when i had my daughter by c-section and as a result ended up in intensive care and lost most of the flesh across my stomach, i'm now wondering if it was down to this Autoimmune Disease as my body couldnt fight the Bacterial Infections i'd picked up.

thanks for reading

Em x x x
 

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The last time I was in the hospital for my knee problems, the nurse was taking medical information for my admission. I had already seen the doctor in emerge and he was giving me my blood work results. So, I was surprised when the nurse asked me if I had any thyroid problems and I said no. She said well your (whatever the blood test is T something) was high, you should ask the doctor. So next thing I know he prescribed Thyroxin for me because it underactive. I don't know how bad it is but he prescribed .05 mg. Seems like a small dose. And I really haven't taken any time yet to research under active thyroid and whether this is common for Lupus patients (I'm still laid up in a wheel chair so I'm focusing my energies on this problem at the moment). My Mom and sister have the same problem, but they don't have Lupus.

Nutty
 

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Discussion Starter · #9 ·
Hi Paula,

My friend has had her scan and everything looked fine, no enlargement, no goitre etc. but the doc said she would probably be given a low dose of thyroxine in order to calm the antibodies down. He explained that by giving her this it will rest her own thyroid and the antibodies may even disappear.

In your case it will be different if there is still a problem. Here's an article which states they can give another kind of medication if your thyroid is overactive, but it can be tedious and sometimes an operation is needed. It also states that if your numbers are close to abnormal ranges that it's worth doing the antibody test.

http://www.thyroid.org.au/Information/disorders.html

Maybe it's more of a drama treating a kicking in kicking out hyperthyroid, I don't know? My Grandfather had autoimmune thyroid disease, Graves in fact (overactive). Goodness knows what treatment he received :( we used to secretly call him a bag of bones because he was so skinny and his eyes protruded a lot. Never said it to his face of course :hehe::lol:

love
Lily
 

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Can someone tell me...would thyroid problems cause a swelling to the side of the neckwell actuall teh swelling is between the centre of teh throat and the side of the neck...
think of a clock...well where its 5 o clock !
 

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Hi Christine.

I had similar to what you describe.......also at 5 o'clock as it happens.

I have thyroid antibodies, or had perhaps, I don't know if I do currently. The lump was called a thyroid nodule and was left alone since my thryoid function was normal.
Eventually I had to have it surgically removed as it began to increase in size to the point where it was displacing my trachea and becoming increasingly uncomfortable.
Still have TFT's regularly and have remained OK.
HTH
 

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Hi Christine,

I have attached a site that has a diagram that might help.

http://en.wikipedia.org/wiki/Thyroid

My thyroid problem was discovered when I went in looking like I had the mumps on one side. The swelling wasn't near the thyroid gland. Upon further investigation the doctor found I had a goiter.

You should be tested if you have any of the symptoms.

I hope you are feeling better since your treatments.

Take care,
Lazylegs
 

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Christine hi

I hope that you manage to get your thyroid gland sorted out. I have a sensation of a lump at 7 o`clock so I know exactly what you mean. Infact I came on here to see whether there was anything about thyroid glands and saw your post.

I am sure that you will get it sorted out - I think that I know who you are and you seem a strong lady who will not be messed around - and therefore you will get it sorted.

I have always thought that I had a thyroid problem....I was told once that I had an inflamed thyroid whilst being examined - I had a scan and it showed that it was very slightly swollen and that I had several cysts of no real significance.....my blood tests have always bordered hyper but because they fall within normal range they have always just left it...but I do find that I have periods of it feeling inflamed/whatever - usually when I am feeling unwell with other stuff......I simply cannot be bothered to ask for it to be looked at again....you get fed up with it all.....I find that when it feels swollen I tend to feel anxious, get hot (which could be confused with the menopause).....and over the past few years I have had pain in one of my eyes - but not sure whether this might just be sinus probs....It is a pain in the backside to be honest.

Hope you get things sorted out.

Best wishes to you.
 
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