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Old 12-16-2004, 02:54 PM   #1
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Hi! Im a newbie with questions.

Hi you all!

I dont really know how to express my feelings after reading the stories that I found here. Im lucky to have found this board I think... And finally I have found a place where I can ask the "experts".
I call you the experts since I feel that none of the doctors that I have tried out has any experience at all... Though, my last doctor has been pretty clear about my situation: He is doing anything he can to figure out my problem.

Allthough my problem officially started yesterday, I believe my problem has been going on for many years already.

I can remember when I was much younger that my doctors in Norway always pointed at my neck and sais, hey, you got Struma (dont really know the english expression, but I would think its the same as when the thyroid gland is enlargend). They sent me to take blood, but always came back with the results: nothing is wrong with you.

About 7 years ago, things changed quite much in my life.
I started to have extreme pain in my legs. I couldnt really walk much. If I walked 100 meters, it would take me 3 hours to recover enough to move anywhere. If I woke up at night, I had to crawl on my knees to get to the toilet. It took about 1,5 years before I had pain and I had to see another doctor than my normal doctor (who had given me something to smear on my legs, cos I had growing pain... he said). This other doctor was a "trainee" and she didnt know what to do, but she came up with a great idea to send me to a private clinic for sports problems. I went there, the doctor there had a look at me for 5 minutes and said: Hey, I know what your problem is. He had discovered that I had Tarsal Tunnel Syndrom (Carpal Tunnel Syndrom, only difference is that the problem is on the inside of your ancles). A few months later I had an operation, and I could walk again.
Just a few months after this I got quite large problems with my tummy. I had acute pain, had to run to toilet, if I ate out, I wasnt even sure that I would make it home... My doctor had me checked for chrons disease, coliaki, and other known things. He could only come to the conclusion that I had a permanent/cronical infection but didnt really have a treatment for it. I had to adjust my lifestyle.

Around this time I made a carreer move, and also moved location to the Netherlands. I had constant problems with my tummy. But my dutch doctor said that I had to eat more fibers.He also mentioned my "struma" or my enlarged neck, and got some bloodsamples. Nothing was wrong on those, so nothing to be done, right?
In November 2002, I was in the US for a business trip. After 3 days stay, I get so ill, that I have to go to the hospital. A few hours later, I was on the operating table to take out my gallbladder. My gallbladder had been so ill, that if it had broken, it could have cost me my life.
About 1 year ago, my doctor got sick (heartattack or so), and was replaced with another doctor. I had the same complaints to him about my stumack, he got me to a specialist, and I got the diagnoses Irritable Bowel Syndrome. Just some months before this, he gave me a prescription for Xenical, weight reduction pills.
A few months ago, I started to feel exhausted, I hated life, I hated my work, I started with moodswings, I had fights with people. My personality totally changed! I felt depressive. Im not really a cryer, but I really could not stop myself from doing it (nothing wrong with crying, but when you do it without any obvious reason... hey!). Besides this, I can say that I have had hairproblems... a bit more than normal. I have dry skin... my muscle ache. I sleep whenever I see a bed or a sofa to sleep on... life is all crap. Think most of the people who read here can relate
Oki, thinking that I was overworked, I just let it continue... what could a doctor tell me? That I was depressed and needed anti-depressants? Only that thought made me depressed
So, what happend next was that I went to a specialist for scubadiving approvement... (dont know how to really write that). He meassured my bloodpressure. One arm didnt even have any bloodstream... but he could messure 170/110... just imagine. The other arm was a bit better... 140/100. That was enough reason for me to see my doc again.
I went to my doc, and spilled my guts... they really came out... so he checked my thyroid gland again with his hands... and found out that I should do an echo, and do some bloodwork.
So... that echo was done yesterday, and the doctor who did the echo said that it was obvious my thyroid gland was damaged.
However, a few weeks ago, I got the bloodsample results, and they showed, as always, normal values...

Reading your stories here, makes me quite obvious that normal isnt always normal. These hormon production values have to be adjusted for every individual... and I guess that is something I have to fight for... I still have to go back to my doctor and discuss further progress. Cos we still dont know what causes the damaged thyroid.

But my question to you here: what do you think?`What can I expect of the further investigations? And do you think that with an obvious damaged thyroid gland, I might still be ok (despites the other symptoms I have?) Do you think my gallbladder, irritable bowel syndrom and tarsal tunnel syndrom might have something to do with this?

I would so much appreciate any answer I can get to this! Cos at this moment, I feel quite alone.
Telling my father about this wasnt so easy, cos he wouldnt know how I feel. Telling my colleagues will also not help me... friends... well... if they dont know how it is to be inside me... they also cannot relate... So Im desperately hoping that someone might be able to help me a bit with my questions!
Thanks a lot for the entries you already wrote! That makes a lot of comfort for me already

Last edited by sivcath; 12-16-2004 at 02:55 PM.

 
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Old 12-16-2004, 05:57 PM   #2
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Re: Hi! Im a newbie with questions.

Quote:
Originally Posted by sivcath
But my question to you here: what do you think?`What can I expect of the further investigations? And do you think that with an obvious damaged thyroid gland, I might still be ok (despites the other symptoms I have?) Do you think my gallbladder, irritable bowel syndrom and tarsal tunnel syndrom might have something to do with this?
Yes, those can be associated with a thyroid problem as well as many of the other problems you mentioned. The thyroid affects every cell and gland in your body. Most likely they were not running the correct thyroid tests either.
You should have your FREE T3 and FREE T4 checked and you should be checked for antibodies, chances are you may have them and this may be why the thyroid was enlarged and the tests were "normal". Thyroid tests can be in range for years with many symptoms present if you have antibodies.

Hang in there, it will get better. Learn all you can, its the best way to insure you get the treatment you need. If you haven't already read the "Informative Archives" at the top of the posting page, be sure to go through that.

Good luck and please keep us posted.

 
Old 01-03-2005, 02:54 PM   #3
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Re: Hi! Im a newbie with questions.

Hi dea4!
Thanks a lot for your input and the nice words! I got my doctors appointment tomorrow, I am curious for what he will do with me and for me
I will keep you all posted!

 
Old 01-08-2005, 03:24 PM   #4
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Re: Hi! Im a newbie with questions.

Since I got so great luck, my doc appointment is on tuesday this comming week instead of last week... my doc came down with a kidneystone...

I will get back here when I know what they want to do... I will get a replacement doctor, I hope he takes me as seriously as my other doc does!

SivCath

 
Old 01-08-2005, 03:36 PM   #5
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Re: Hi! Im a newbie with questions.

If I were you I would ask for a copy of your test results when you go to the next appointment and post them here-maybe someone can help you to interpret them and tell you what other tests need to be done. Best of Luck!

 
Old 01-11-2005, 03:40 AM   #6
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Re: Hi! Im a newbie with questions.

Hi all!

I went to my doc today.
The echo shows that I have a thyreoiditis. But to be 100% sure, and to know what kind of thyreoiditis it is they have to do more tests.
The bloodtests they did was only for TSH - which was normal.
There was no T4, FT4 or T3 taken. No anti-tpo.

They also forgot my B12, which 8 months ago was in boarderland.

What they did take was a test to see if I had infection in my body, which indeed indicated I did at the time they took the test. And they also had taken a test to check my liver function: that one also shows that something is going quite wrong with my liver.

I took more tests today: diagnosis of the thyroid: TSH and FT4, plus the doc wanted to see the FT3. I asked for anti-tpo, but she didnt do it.
But she also requested B12 and she also requested a test to see if my body still has an infection going on (which Im sure of, since I am feeling extremely bad at the moment).

Now I got a question for you, if I mention thyreoiditis, what do you think?
Can it be Hasimotos? Can it be something they can treat by short term medication? What else?

When the tests are back, I will go back to my doc, and then see if they send me to an internist doctor.

And in the meanwhile, I am put on Acetylsalicylacid three times a day... according to the specialist my doc called, that could be a help untill we got more answers.

Now, what do you guys think?

Siv
ps. I will ask for the results next time I go to my doc, then we can see what you think!

 
Old 01-17-2005, 02:37 AM   #7
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Im not really happy

Hi all!
I got some results on my blood samples today:

B12 - 108 (reference 130 - 700), this was in boarderland 8 months ago.
TSH - 1,9 (reference 0,25 - 5,6), this was 2,6 in mid november.
T3 - 2,18 (reference 1,3 - 2,7), it was supposed to be FT3 not T3!!
BSE (infection in body) - 39 (reference 1 - 20), this was 33 in mid november.
Gamma-gt - 49 (1 - 35)

Im pretty sad about this! My doc thinks everything is fine with my thyroid. Eventhough the ultrasound shows that it is infected! She will not do the FT4, FT3 or testing for any antibodies in my blood. She thinks that the infection is something else.
She agrees that B12 is bad... but she doesnt think that this is the cause of my symptoms (extreme tiredness, isolation, cold feet and fingers, tingeling in fingers, pain in muscles and joints, dry skin, nails falling apart, heavy heartbeats, high temperature, water in my legs, etc).

She will call a specialist today, and I have to call her office this afternoon to hear the result... but Im very very upset... why doesnt she want to test the FT* and the anti-tpo etc??

What would you guys here recommend me to do?

 
Old 01-17-2005, 07:30 AM   #8
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Re: Hi! Im a newbie with questions.

Some drs think that they know best even though they clearly do not.
If you cannot switch to a different dr then you need to push this one to do the testing you want, sort of like the squeaky wheel gets the oil, time to really squeak loudly.

 
Old 01-17-2005, 08:42 AM   #9
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Re: Hi! Im a newbie with questions.

Is she going to treat the B12 deficiency? She's wrong if she doesn't think at least some of your symptoms can't be from that... especially the tiredness, tingling, and possibly the muscle pain.
I think you have several things going on at the same time. Get that B12 treatment started and try to find the source of the infection. If the infection turns out to be an acute form of thyroiditis (as opposed to Hashi's, which is considered chronic), it's possible that when it clears up, your thyroid function will return to normal without permanent damage.

 
Old 01-18-2005, 01:13 AM   #10
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Re: Hi! Im a newbie with questions.

Hi and good morning!

The good news is that my doctor called a specialist yesterday cos she came into doubt when I sort of got a bit angry with her.
So I had to pick up a new form for new bloodtests.
These tests will be taken:
anti-tpo, anti-tpg, FT4 plus the normal thyroid diagnoses, and besides that also to see for continuous infection in the body.

I do believe that she should definately treat B12, cos I believe its very low.
If she doesnt do anything with it, I am sure my normal doc will, when he comes back from being sick (kidney stone, the poor old man).

I got a question to you! I was put on acetylsalicylacid (asperin) by my doctor. Had to take 500mg 3 times a day. I have heard that this can highen the FT4. Can it also affect the antibodies?

I have felt pretty ok the last 3 days. And I think it might have to do with the acetylsalicylacid. I stopped it on sunday so that new bloodtests doesnt get affected by these tablets. But for how long should I wait before I take the bloodtests after stopping with these?
Do you guys also experience to have some good days inbetween, and then it gets worse?

Thanks so far to all of you who has responded

Last edited by sivcath; 01-18-2005 at 01:15 AM.

 
Old 01-18-2005, 08:23 AM   #11
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Re: Hi! Im a newbie with questions.

I agree with Midwest regarding treatment for your low B12. My mom has pernicious anemia and has to get shots monthly. She gets so fatigued closer to the end of the month. Fatigue is very common in low B12. Hope your doctor treats you for that. For thyroid problems, sometimes it is difficult to get doctors to listen to you and your symptoms. Keep trying to read up on thyroid issues and you will be better informed to get doctors to listen. Good luck.

 
Old 01-18-2005, 11:48 AM   #12
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Re: Hi! Im a newbie with questions.

HI

Do you also have a problem with thinking properly (brainfog)?

And brittle nails and dry skin is a sign of a possible thyroid problem. TSH over 2 should be treated as suspect with symptoms. Maybe you can get to see Dr Skinner in England if you have no luck with your doctors. He has helped a lot of people with their thyroid problems.

martin

 
Old 02-04-2005, 02:29 AM   #13
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Re: Hi! Im a newbie with questions.

Quote:
Originally Posted by woozyguy
HI

Do you also have a problem with thinking properly (brainfog)?

And brittle nails and dry skin is a sign of a possible thyroid problem. TSH over 2 should be treated as suspect with symptoms. Maybe you can get to see Dr Skinner in England if you have no luck with your doctors. He has helped a lot of people with their thyroid problems.

martin
Hi Martin!
I got brainfog a lot. Not all the time, but very often. I might think of 10 things to do in one day, but in the end of the day those 10 things are still to be done... My nails and skin is also a big mess. My toenails falls apart when I see them...

But finally I got some test results. Will post them immediately

 
Old 02-04-2005, 02:37 AM   #14
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Finally some results that is going to take me somewhere

First some history:

Since summer 2004 felt tired (extreme jetlag), being a bit down, extremely grumphy, stressed out, high bloodpressure (going on for a while), always freezing toes and fingers, pain in muscles and joints.
I went to a scubadiving doctor to get approved for scubadiving, when he pointed out my high bloodpressure.

I then decided to go to my GP to check that out, plus the problem with being so tired.
He then ordered blood samples and echo of my thyroid.

In november he took these tests:
BSE (infection in blood) 33 < 1 - 20 >
Gamma-gt (liver function) 49 < 1 - 33 >
TSH it was about 2,6 < 0,25 - 5,6 >

Nothing else was taken of interesst...

In december the echo showed signs of a thyrioditis.

I went back to my doc in january, but my doc was sick. Anyways, they took more blood:
BSE 39 < 1 - 20 >
B12 108 < 150 - 800 >
TSH was within normal < 0,25 - 5,6 >

Because of the echo and me still not feeling assured of this, the doc took more blood (got the results this monday):
BSE 33 < 1 - 20 >
TSH 1,80 < 0,25 - 5,6 >
FT4 12,5 < 10 - 23 >
Anti-TG and Anti-TPO was not ready yet.

Today I called my doctor assistant, and she told me that the anti-tests were finished.
They wanted me to come back, because the Anti-TPO was high.

So, monday I go back to the doc to discuss this.

So, fighting now for 3 months to get the right blood taken. And it shows that both my B12 level and the Anti-TPO is working against my health.
Besides that I always shows sign on having an infection, even if I feel good that day. And the liver test doesnt make me all too happy either.

Anyways, a big thanks to everyone here who has kept my spirits and hopes up! And for all the information that took me as far as taking the right blood samples

I will let you all know how the doc appointment on monday goes!

Siv Cathrine

 
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