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    Old 02-25-2008, 02:58 AM   #1
    Audrey-B
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    Received my new results & unexpected news

    Well my doctors visit started off fantastic by being told that my ferretin is now 61. He still wants me over 100. I suppose it's possible as i was at 35 back in August 2007. He would like to see my zinc higher as well as my vitamin D as they are still straggling behind a bit.

    Then came the bad news. Finally the pathology people performed a thyroid antibodies test which apparently my doctor had been trying to get them to do nearly a year ago when i first saw him. They kept doing some other test and not the one he wanted, but the bottom line is that my test result points to Hashimoto's now that the correct test was finally performed. He has now referred me to another doctor to sort out treatment and further evaluation.

    I'm now scared of what any new thyroid meds can do to my iron levels, especially after reading what other posters who have iron/thyroid conditions have gone through. Also the possible side effects etc as i believe if i am put on meds then i think it's for life and not simply for a month or two.

    I was so happy thinking the main thing i had to correct was my iron and that alone was such a struggle and now to find out i have even bigger problems feels like such a blow. Oh well, guess this thyroid situation can explain away some more of the things which i thought were 'normal', but i now think possibly aren't. Might also explain why i stopped hair shedding for a month and then it started again.

    I also got my doctor to look at thyroid test results for a lady i work with. Her doctor had told her that the tests were "within range" and all ok. My doctor thinks differently and i'd be more likely to believe him as he works closely with one of the best thyroid researchers in Australia.

    So there you go, so many doctors love that phrase "within range" and so many times it's all wrong. I know we are supposed to have faith in our medical people, but they seem to get it wrong so many times. What if i had never found the doctor i found? where would i be today? what state would my health be in? I also feel for all those people out there who don't even know that their symptoms are related to a particular thing eg: low iron or thyroid and simply believe they are ok b/c their doctor tells them their results are ok and tells them to pop a few vitamin pills or take some antidepressants........

     
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    Old 02-25-2008, 04:15 AM   #2
    ChristineVA
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    Re: Received my new results & unexpected news

    Audrey,

    You won't have any challenges with the thyroid meds and iron. You just need to separate them, as you know.

    Your biggest challenge will be the thyroid "swings" associated with Hashimoto's. Hopefully, you will have a simple case where your thyroid is just gently failing. Many people with Hashi's have their thyroid glands fail for a bit, then pick back up steam, and then slack off. This will put you on a hormonal rollercoaster. Also, you will need to find just the right dose of T4 to make you feel better but not make you hyper. All very tough to do when your gland is still working partially.

    As for the iron though, of anything, fixing your thyroid should make it all even better.

     
    Old 02-25-2008, 05:55 AM   #3
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    Re: Received my new results & unexpected news

    Hi Audrey,

    I'm sorry you got bad news

    I've been wanting my thyroid antibodies tested for over a year now, and none of the doctors I've seen will run the tests. I'm seeing a new endocrinologist next month who I hope I can convince to test the entire thyroid.

    Did you have normal tsh? I'm sure you were tested for that many times...My tsh has always been within range that is why they don't test further with me.

    As Christine said, I think it is a matter of not taking iron with the thyroid meds. What kind of thyroid meds are they going to give you?

    I'm glad you got some answers, but sorry it isn't the best news.

    Last edited by littlebunnyfoo; 02-25-2008 at 05:56 AM.

     
    Old 02-25-2008, 03:01 PM   #4
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    Re: Received my new results & unexpected news

    Audrey--A 61 Ferritin with or without Hashi's is the MOST wonderful news!!!!! I can't wait until I get to those numbers. As for the Hashi's, yes, you do have to take t-4 meds for the rest of your life, but it's not anything to worry about. I was diagnosed with it in Jan 05 and it hasn't caused any problems for me that I know of????? I get extra tired when my TSH goes up but it doesn't last long, new blood test, more or less meds or the same every quarter. That may very well explain your hair issues. Perhaps with Synthroid or whatever it may help this even more, I hope so.

    I took iron as you know all year about 3 hours after Synthroid and had blood tests every month and never had a problem with it. I was absorbing the Synthriod just fine. I think it's a lot easier than you know. Now, this type of ~throid disease~ is different than a thyroid condition as it is in fact a disease process. It can also be hereditary. Do you have anyone else in your family with it or other AI diseases? My grandmother and aunt on both sides of the family had goiters, but I don't know if they had Hashi's or not. I had my mother get tested for Hashi's because I thought she was the culprit, but she tested Neg. Also, I have never gone hyper, I think that if you start on a low dose and are very careful in upping the dose that this won't happen. At least it hasn't for me. Good luck to you! FLFLOWERGIRL

     
    Old 02-25-2008, 11:58 PM   #5
    Audrey-B
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    Re: Received my new results & unexpected news

    Thanks for the advice and kind words ladies

    ChristineVA - I took the news so well when i got it, thinking 'thank God we now have answers'. I was really good until i got home from the doctors last night and hopped on the net to do some research. I found one site were they discuss how some people continue losing hair due to only being on a T4 type drug like the synthroid and they stop losing their hair when they take a drug which combines T4 and T3. I really don't want any more hair loss. I've now had 7 years of it and enough is enough. I suppose i should stop stressing until i've had my appointment and the doctor decides what he will do.

    It's more to do with going through so much in the last 12 years of my life and the hair loss was like the last straw and now to find out i'll be on some drug for the rest of my life b/c something else has gone down the toilet and perhaps never getting my hair back upset me even more. I guess i should be thankful that there are med's for this type of thing and once i'm on it i should start to feel better bit by bit.

    FLFLOWERGIRL - i'm not sure whether anybody else suffers from this in my family. My mother's side all seem healthy enough and live in Europe. My fathers side could perhaps be the side who has this if it's genetic, but my dad lost his mother at 9yrs of age and his sister died at 21 back in 1957. I don't know whether males carry this? i seem to only come across literature concerning females. An acupuncturist who my father was seeing at one time felt he had a thyroid issue and when my dad went to his doctor for blood tests he got the answer we've all gotten.....'all ok, all within range'. My dad isn't ill, but does have a few odd symptoms and doctors can't find anything. I'm wondering whether i should get him tested again, but force them to do the correct test.

    There are so many forms of thyroid conditions out there. When i used to read the list of symptoms i never seemed to belong totally to hypo or hyper. I seemed to be a little of each. Well this explains it now i guess.

    Littlebunnyfoo - yeah it's difficult when you know something isn't right and you know there is a certain other test they could do to rule out what you feel you might have. Are you still on iron med's and how is your hair? Is there a chance you could find a new doctor who would be willing to do the antibodies test so that you can have peace of mind?

     
    Old 02-26-2008, 04:38 AM   #6
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    Re: Received my new results & unexpected news

    Quote:
    Originally Posted by Audrey-B View Post
    ChristineVA - I took the news so well when i got it, thinking 'thank God we now have answers'. I was really good until i got home from the doctors last night and hopped on the net to do some research. I found one site were they discuss how some people continue losing hair due to only being on a T4 type drug like the synthroid and they stop losing their hair when they take a drug which combines T4 and T3. I really don't want any more hair loss. I've now had 7 years of it and enough is enough. I suppose i should stop stressing until i've had my appointment and the doctor decides what he will do.
    Audrey, don't sweat the T4 thing. I've been on T4 alone since 1995 and haven't lost any hair. I also convert T4 to T3 just fine, so it is my best interest not to take the T4/T3 combo meds.

    There is an "underground" of people who believe there is a conspiracy to use only T4 drugs. They think that the doctors are all in the pocket of Synthroid. I just don't believe that is true. There are two really well-respected doctors I listen to who truly care only about their patients and aren't taking kickbacks who really believe that, for most people, all that is needed is the T4 drugs. Yes, there is a very small percentage of people who cannot convert synthetic T4 to T3 and they have a problem. But that's easy enough to figure out.

    Many of these people who feel bad on T4 alone switch to the combo med and they still don't feel right. Then there are a few who do feel a lot better. I've taken the combo and, quite honestly, taking the T3 made me feel like I was going to jump out of my skin.

    But you'll figure it all out as you go along.

     
    Old 02-26-2008, 04:49 AM   #7
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    Re: Received my new results & unexpected news

    I asked my PCP about the Hashi's this morning. He said that if I had anything like that it would show up in tsh. He is running tsh again. I wanted to tell him, NO!! People on the internet say otherwise! I wasn't brave enough - I will have to wait for my thyroid specialist in March.

     
    Old 02-26-2008, 05:26 AM   #8
    ChristineVA
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    Re: Received my new results & unexpected news

    Quote:
    Originally Posted by littlebunnyfoo View Post
    I asked my PCP about the Hashi's this morning. He said that if I had anything like that it would show up in tsh. He is running tsh again. I wanted to tell him, NO!! People on the internet say otherwise! I wasn't brave enough - I will have to wait for my thyroid specialist in March.

    Your doctor is right and he is wrong.

    When the Hashi's gets to a certain point in destroying your gland, it will EVENTUALLY show up in your TSH. You can have Hashi's and, until it gets bad, your TSH will be fine. I'm not sure if Hashi's needs to be treated until the TSH gets wacky though, so he does have a point. Hashi's is treated with T4. If your TSH and T4 are not a problem, then they wouldn't treat.

     
    Old 02-26-2008, 05:38 AM   #9
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    Re: Received my new results & unexpected news

    Christine - do you know if it is free 4 or total 4? Is there a difference?

     
    Old 02-26-2008, 06:28 AM   #10
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    Re: Received my new results & unexpected news

    Quote:
    Originally Posted by littlebunnyfoo View Post
    Christine - do you know if it is free 4 or total 4? Is there a difference?
    There is a difference in the tests. First off, just to be clear, T4 is the hormone your body gets from Synthroid (or makes on it's own).

    There are two different blood tests: Free T4 and T4. There aer subtle differences in the tests but, basically Free T4 is the better test as it measures "unbound" T4 that is not tied to any proteins. It is supposed to be more accurate than a T4 test. That's about as technical as I can get on this.

     
    Old 02-27-2008, 12:54 AM   #11
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    Re: Received my new results & unexpected news

    Christine - thanks for your expertise. I think we'd be lost without you

    Littlebunnyfoo - i know where you are coming from in wanting to get the antibodies test. march isn't far off so hopefully that doctor will give the go ahead for the required test. How is your hair now? Still shedding? Mine stopped shedding badly for a whole month and i was ecstatic, thinking it was the iron. Then it begins shedding a lot again and i find out about the hashimoto.

    I am going to stop all research until i have seen this new doctor. I read how getting one autoimmune illness can lead to further immune cases in certain people. I think i'm scaring myself unnecessarily.

     
    Old 02-27-2008, 05:19 AM   #12
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    Re: Received my new results & unexpected news

    Audrey, My hair is still shedding, but not as badly as last year. It is still not at the normal shedding stage.

    I got my ferritin checked yesterday - it was 29. So it either went from 103 in December to 29 in February....or the 103 was incorrect. The only thing I changed was that I was taking iron with vitamin C and lysine before and since my ferritin was high, for the last 2 months, I've only been taking the iron. Hmmm.

    I think it is a good idea to stop researching until you figure this Hashi's thing out.

     
    Old 02-27-2008, 12:59 PM   #13
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    Re: Received my new results & unexpected news

    littlebunny--Sorry about your ferritin numbers. It does sound like it may be a lab error. Do you think that it is possible for your count to drop like that? What did your doc say about it?

    One time they completely screwed up my labs because they dropped the vial on the floor. I didn't know that it would skew the results until it came back with bad readings and they asked me if I was a closet alcoholic. But the results scared the heck out me in the meantime. FLFLOWERGIRL

     
    Old 02-27-2008, 02:06 PM   #14
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    Re: Received my new results & unexpected news

    Doctor did not say anything about the ferritin dropping so many points in 2 months. My opinion is that it was never 103. I've been hovering around the 20's for ferritin for months. For it to go to 103 was amazing...especially since serum iron levels came back lower than normal at that time.

     
    Old 02-27-2008, 06:22 PM   #15
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    Re: Received my new results & unexpected news

    AudreyB-I just wanted to say hi. I have hashi's and have been treated for about a year and a half. I take synthroid. I have also had low ferritin and used supplemental iron to increase my ferritin level. While taking iron, my dose of synthroid had to be increased because the iron affects thyroid meds and you will get a higher tsh (mine went from 1.5 to 4.0 while on a large dose of iron). When I stopped taking the big dose, my synthroid had to be decreased. I just wanted to let you know how iron affected the meds. Also there are other drugs that can affect your thyroid and your thyroid meds. A really good book on thyroid issues is Thyroid for Dummies,written by Dr. Rubin. I didn't previously think much of the dummies series of books, but this one has been a huge help in figuring out my hashi's. I highly recommend it. You may find it informative and a bit more calming than what you are finding on the net. The whole thing really scared me too. And, I had a hard time getting info from the previous endos I have seen. The book really helped alot to answer questions the docs were just too rushed to answer. If you aren't sure about buying the book , check it out from the library or look at it while at the book store. I think you will find it worthwhile.
    Let us know how it all goes. Try not to get too stressed, it is not good for your antibodies and thyroid. Do you know what level your antibodies were found to be at? You will find in all this that you should always get a copy of your lab results, it helps alot.
    If you have a cooperative doctor, it may help you to get your CRP-it measures inflammation in your body. Apparently when the autoantibodies are attacking the thyroid it is inflammed-thus hashimoto's thryoiditis (inflammation of thyroid). Because my antibodies are very high, I thought my crp level would be terrible. Well, my crp level was great and that helped me to feel better. Look up crp level- you should find some good info on that. Also you may want to add fish oil for omega 3 and perhaps selenium. The fish oil is believed to lower inflammation and selenium may have an effect of decreasing antibodies. Anyway, Dummies book should help you alot.
    Good Luck , it's not the end of the world. Sometimes it is hard, and discouraging but you are certainly not alone! There are alot of people with hashi's and thyroid issues. The thing to really focus on is various wellness aspects of your life- with an autoimmune disease you want to be the healthiest you can be. That means your diet, your exercise, your methods for dealing with stress, your supplements and whatever else you can think of to be healthy all over. Dr. Rubin does a good job on overall health issues and supplements as well.OK-I better quit , it seems I am going on and on.

    Last edited by osteoblast; 02-27-2008 at 06:24 PM.

     
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