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  • Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

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    Old 04-14-2006, 01:23 PM   #1
    confused725
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    Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Hi all!

    Was wondering if anyone else has tpo & tg ab but all other labs in "normal" ranges.

    How are you being treated & what has the Dr dx'ed you with?

    Did you have U/S of the thyroid?

    THX in advance!
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    Old 04-14-2006, 08:32 PM   #2
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    That's me exactly. I have elevated TPO and Tg antibodies but my labs are normal. I have been diagnosed with Hashimoto's. Based on my symptoms and family history I requested a "trial run" of thyroid meds and my dr agreed to it. I am on 50mcg of Levoxyl (although I was on Synthroid first and then Armour at my request...my endo put me on Levoxyl even though I wanted to stay on the Armour).

    I did have an U/S of my thyroid and it was normal.

    Kelly

     
    Old 04-15-2006, 06:13 AM   #3
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Kelly,

    Does the T4 replacement help with symptoms?
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    Old 04-15-2006, 08:07 AM   #4
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Hi mama,

    Has the meds been helpful?

    I'm not sure yet but i was told I have Hashimotos thyroiditis. (I'm only skeptical because my main symptoms would go along with hyper.....loss of periods, loss of weight, a crazy nervouse feeling constant, heart palps, loss of hair, ect......My Dr says that I will have hyper phases when the ab attack and the release of the hormones take place, so I really should just go with that but my trust has been diminished)

    Do you go through both hypo n hyper phases?

    I'm assuming the "thyroiditis" is because my U/S showed inflamation. The Hashimotos would be the indicator from the tpo and tg ab.

    What seperates what you have and what I have is the question. Did the Dr explain to you that the antibodies will/are in process of attacking your thyroid? (Or perhaps thats just my situation, being that my thyroid is inflamed).

    What has he said about where you will go from here. Can you expect inflamation once the antibodies attack? I'm curious as to what he's explained to you.
    My Dr said and I had a few oppinions, says we'll wait till my lab changes and my thyroid will most likely get destroyed completely and then I'll be treated as hypo.

    What were your symptoms and how did you come to get antibody testing?

    THX! Talk soon!
    Rachel
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    Old 04-15-2006, 11:11 AM   #5
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    hyperkim, the T4 meds keep me at a functioning level but I have so many hyper flare-ups I don't feel well very often. I DO still get hypo symptoms (tunnel syndromes in my wrists, elbows and ankles, cold intolerance, hair fall out, very dry skin, hard stools etc...) but I can live with them; before they were unbearable. They have considerably improved my fogginess and lethargy.

    Confused, I do go through hyper and hypo phases. I even have days where I feel perfectly normal (they're few and far between but I do have them).

    My drs have never explained anything to me even when I asked direct questions. I've had to do most of my own research to find information.

    The disease is actually called Hashimoto's Thyroiditis so everyone with hashi's has thyroiditis. It is a chronic infiltration of lymphocytes (a type of white blood cell) into the thyroid gland's cells; meaning it's being attacked by antibodies. Whether inflammation is evident or not the thyroid will have evidence of having been infiltrated (which is why antibody negative people may still have Hashimoto's...they are diagnosed by doing a biopsy).

    Everyone who has TPO antibodies (which attacks the enzyme within the gland that helps the thyroid cells make hormone) and/or Tg antibodies (which attack the thyroid tissue itself) will have inflammation of their thyroid.

    My symptoms started out very mildly hyper following a miscarriage.I became pregnant again right away and had the symptoms throughout preg and after the birth.

    When my baby was 6 months old I got the flu and just never recovered. I was lethargic, achy, foggy, cold etc...I literally felt like I had the flu for 5 months. I went to my dr at that point and he ordered the typical battery of tests. Everything came back normal and he sent me to a rheumatologist (I ended up seeing another one for a second opinion). That didn't turn anything up either.

    By that time I was pregnant again and feeling "okay". I had a flare-up of hyperT though that lasted from week 6 of my preg to week 9. My hips and shoulders were so weak afterwards that I had to use a cane for 6 months so that I could get up my stairs, walk more than across the room or get out of a chair.

    I miscarried that baby and two others. A year after I had initially seen him I went back armed with studies showing links between miscarriages and FT4 levels not in the upper third of the lab range.

    My symptoms of hypo at that time were:

    Cold intolerance, miscarriages, menorrhagia (although I was bleeding constantly I still had an obvious cycle), achiness in my muscles/joints, tunnel syndromes, dry eyes/skin/hair, hair loss, constant sore throat/hoarseness, an overall flu-like feeling...I had others also but those were my primary symptoms when my dr agreed to the trial run of meds. I noticed improvement within the first week but had a lot of ups and downs while trying to get it regulated.

    I requested the antibody testing and my dr agreed to do it although he didn't expect abnormal results. When my labs came back they were very elevated and so he sent me to an endo. I regret ever going to her. I was pregnant and in a hyper flare up at the time (they were only about every two months at that point) and she reduced my meds by 66%.

    Since then I have miscarried twice, I still have constant bleeding if I'm not on birth control, I have hyper flare-ups about every three weeks (they last 2 weeks from start to finish...I have about 3 really bad days during that time). I've developed swollen lymph nodes around my thyroid, I'm still chronically hoarse with a sore throat and swollen tonsils. After the hyper flare-ups I sink back into hypoT and have a lot of aches, no motivation, cold etc...

    It's been almost 2 1/2 years since I got sick and I've been on meds for a year. I admit that I do feel better but I'm on thyroid meds, sleep meds, birth control and pain meds to feel this way. I get colds and the flu more often than I ever have in my life (I've had the flu three times in the last year!).

    I'm grateful though...two years ago I rarely got out of bed I felt so poorly, a year ago I was still using a cane and this year I've got a regular exercise routine, I'm able to eat well and I joined tae kwon do with my son. Some things are better, some things aren't. The miscarriages were difficult (two were second trimester losses, both boys). Yet I have 5 smart, beautiful, healthy children that I squeeze a little tighter every day .

    Sorry to be so long...I just wanted to be thorough.

    Kelly

    P.S. My drs feel I probably have another autoimmune disease too although they don't have a clue as to what it might be. So that needs to be factored into my situation I guess.

     
    Old 04-15-2006, 01:03 PM   #6
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Hi kelly,

    Wow, thx so much for typing all that.
    I'm sorry about your losses & its great to hear you have 5 beautiful, healthy children. I'm sure they keep you busy. I know mine do! (Which is not always easy when you're feeling like crap half the time and having to do research on why, the other half!

    Ok, so now I know, hashimotos and thyroiditis DO go together. You say you have both hypo & hyper symptoms.......like me. How can you tell when you go from hyper to hypo?

    This is all new to me & I'm starting to "THINK" I can tell a little when I go from one to the other.

    There will be days when my heart is continuously racing, non stop, I'll have loose stools and just feel really hyper inside & out. I cant sleep because that racing feeling doesnt stop. My hair is sooo thin, falling out p[lenty! I feel so irratible & shakey.....no patience.

    Then there will be days where I feel slow, tired, even my insides feel slower, heart rate & all.....I'll actually go to bed and get some sleep. I'll have fewer bowel movements. My hair seems thicker and my nails stronger (I dont notice "as" much hair falling out).

    Thats about the only changes I get......what do you think?
    Asside from that, my other symptoms are Always presant so this is why I'm not sure about hypo & hyper. My periods are "always" light. I have lost 20lbs in a year and I'm not gaining anything. ALL I do is eat, nothing seems to fill me. The fogginess in my head comes and goes on a daily basis (never fully going away).

    Do you think this is how hypo n hyper changes, as far as what I explained, altho my peroiods still very light and all?

    I must say, when the hyper feelings go away, except for the tiredness and the darn foggy brain feeling, I dont mind it as bad as the irritating hyper feelings!

    I really think having children bring all this out. I had my 2nd son 2 years ago, right after that, this all began. Like you, having children & pregnancy, do you feel it began there?

    Funny thin, before my son was born, my periods were alful. I used to stay home 2 days out of the month & just keep my feet up. Now for 2 years, altho it comes every month,its barely noticeable, I'd think if I had hashimotos, I'D hyave heavy periods & weight gain instead of lose? I was 136 a year and a half ago, now I'm 118.
    From reading the symptoms of HT, it says heavier periods, weight gain regardless of dieting, so why dont I fit that.

    Its a tough struggle, sometimes I think if only I found a doc who'd take the darn thing out.

    Hey, maybe you know one more thing? My TSI was 108 (<125) Is that a normal range being its under 125? Do i or do i not have TSI ab? The endo says its in normal range cause its below 125.

    THX for your replies!
    God Bless!
    PS: what is your plan from here? Are you waiting for your thyroid to lose all function & then just be treated for hypo sypmtoms? Just a thought.
    Talk soon,
    Rachel
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    Old 04-15-2006, 03:02 PM   #7
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    I can usually tell that I'm getting hyper because I get a "shaking on the inside" feeling, my pulse goes from it's usual 50 to 80 and my hips/shoulders get really weak. As for hypo, I start having a lot of joint/muscle pain and lose my appetite. Those are the first symptoms I get for each anyway...it progresses from there.

    I have never gained weight with Hashi's. When I get hyper I usually lose about 5 pounds but always gain it back after the flare-up ends.

    It very much sounds like you're having some fluctuation between hypo and hyper. The difference between us is that you are frequently hyper and become mildly hypo where I'm frequently hypo and become mildly hyper. I think that just as many people experience Hashi's the same way you do as the way I do. Kant is one that has Hashi's and spent more time hyper; she recently had TT and is doing great now.

    The 6 months after childbirth is a VERY common time for any autoimmune disease to become symptomatic. It seems the strong hormonal fluctuations are a trigger (as can be viruses, emotional/physical trauma etc...). Thyroid disease especially seems to occur for the first time after having a baby.

    Only around 50% of women with Hashi's will experience an increase in menstrual flow and only about 75% will gain weight. That leaves a lot of women that don't fall into the stereotypical model of hypothyroidism; which is why so many go undiagnosed.

    As for the TSI, from what I understand anything under 125 is negative; mine were 88 and considered negative. I haven't found anything that suggests otherwise. I think the confusion comes because the goal for people being treated for Graves is to have their TSI antibody levels below 2. However I have no idea if that's the same test or not. It seemed to me it was a different test with a different range. I'll have to research it more and let you know.

    At this point I'm taking the year off from drs. The last two years I have been practically obsessed with trying to figure everything out. I'm doing it for financial and emotional reasons. In the meantime I'm going to gather as much information as I can so that when I see my dr I'll be prepared and know which testing to request. We're planning on trying for a baby next August (2007) if my cycles are regular.

    I have really wanted my thyroid removed for a long time; I still feel that way. I'm considering requesting a referral to an ENT for all my throat problems (swollen tonsils, chronic sore throat and feeling like something is stuck in there). Maybe that will give me some answers.

    Love and Prayers, Kelly

     
    Old 04-15-2006, 03:58 PM   #8
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Well, I did some research. The test used to diagnose and monitor Graves IS the same test (not sure why I thought they were different). Anyway, the percentage given is expressed as the percentage of the "normal" control's baseline.

    In other words all those healthy people out there who participated in the studies had an average baseline 8% lower than your results. When a person reaches 125% of the baseline they are no longer considered within normal parameters. The baseline is an average so some people are much higher and some people are much lower. This is why they consider people 125% above the baseline as still being "normal".

    Obviously like all tests, it's just a range. Some people are going to feel poorly at much lower percentages. However, drs do not seem to be aware of this and take the lab ranges to be "gospel truth". If labs were pefectly accurate they wouldn't be constantly trying to improve their methods.

    TSI antibodies are frequently tested in Graves' patients on anti-thyroid medications to determine if the patient is in remission. Their level of meds is increased until the antibodies are less than 2% of the baseline (at least that's my understanding...not sure how it works out in "real life" since I don't have Grave's and don't know anyone who has gone on ATDs).

    Of course this is confusing since if that's the goal for Graves' patients then why isn't that the goal for people who fall into the lower percentages but are symptomatic?

    The more I research the more the medical profession doesn't make sense to me! I'm amazed that so many drs feel they actually have it all figured out.

    Anyway, I hope I haven't confused you more!

    Love and Prayers, Kelly

    Last edited by ASDGRMama; 04-15-2006 at 04:11 PM.

     
    Old 04-15-2006, 07:30 PM   #9
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Hi kelly,

    I cant thank you enough for all that. Its interesting how misinformed & what little knowledge the Dr's (most importantly the endo's) have on this. When i mentioned the new ranges from what is it? 2003? The TSH that is being .3-3.0 my dr laughed. Like i'm the crazy one!
    I'm currently seeing 2 endos but I'm not sure how long that can last. I have an HMO & I dont even know if thats permitted.
    One explains more in detail but takes very little time on questioning & so forth.
    The other (this one happens to be a woman) & she spent 3 hours on my 1st visit and a good hour and a half on the other 2. She didnt explain processes very well though, such as, "well here's what I think" type of thing. I think i'm going to stick w/ her though because she mentioned diabetes and adrenaline glands whereas the other Dr didnt. They both had the same plan so I guess if shes more thorough, in the long run that's a good thing.

    It's nice to hear that you're going to try for another baby. God bless you! You must have the patience of a saint. I wish you only the best. Babies are wonderful. Some days i feel sooo sick and as sick as I feel, the precious things my 2 year old does, kinda makes me forget my worries, even if it is just for awhile.

    I appreciate you researching the TSI.....I keep hearing something like, its supposed to be under 20% (Cant explain it though, because i never quite understood it). I was just hoping that at a TSI like mine, I'm not looking at hashitoxicosis! Who knows, right??

    Anyhow, I wish you more better days than bad. You say you're taking a break from the dr's but you will still be getting bloodwk done or not? Just take good care!
    Rachel
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    Old 04-15-2006, 07:42 PM   #10
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    Hi again kelly,

    Was just wondering if there is anything you do to help you while in the hyper or hypo stages? Such as, staying away from iodine or any supplimentation. Any advice on that?
    Is iodine (in salt and seaweed, etc...) is that a no no all together? I get confused!

    Thx again!
    Rachel
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    Old 04-15-2006, 09:09 PM   #11
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    Re: Any1 else w/ TPO & TG antibodies but "normal" bloodwk?

    I've found that I have to avoid supplements that contain kelp and natural progesterone. For some reason both of those make my body feel like it's on fire! I'm on birth control but the synthetic progesterone in it doesn't seem to bother me.

    I haven't used iodized salt in years so I don't know if that or other supplements with iodine in them would affect me (I use organic sea salt).

    Basically to get through the flare-ups I take Lunesta (a sleep med) and prescription strength Aleve or Ibuprofen. Honestly when I flare up I find myself wishing I could just take a sleep med and pain med everytime I wake up until it's all over with . Although I've never done it!!

    I really hate resorting to so many drugs but I don't know what else to do. My husband and I are going to try cutting gluten (celiac disease is not uncommon in people with Hashi's) and dairy out of our diets to see if it helps our respective issues (he has bowel problems, restless leg syndrome and is constantly fatigued). I've heard that it can help. I guess we'll see; it's going to take quite a bit of dedication!

    Even though I don't feel well after exercising it's been good for me mentally and emotionally to do it. I feel more stable if I can get regular exercise.

    It sounds like the woman endo you saw is at least aware that other AI diseases can occur with Hashi's/Grave's. That's a plus! I hope she'll be very helpful. I'm considering seeking out a new endo myself. When's your next appt?

    Yup, children are precious for sure ! They make getting out of bed worth it. My three year old will come into my room when I'm not feeling well and rub my feet (my husband always rubs my feet when I don't feel good...she must have picked it up from him) ; it's the sweetest thing!

    Quote:
    You say you're taking a break from the dr's but you will still be getting bloodwk done or not?
    I have an appt with the endo in Aug. but I'll probably cancel it and just have her do the bloodwork (I'll need my prescription refilled and she'll only refill it if I've had recent lab results in). I'll reschedule for next year. I had an appt last month that I cancelled; she sent a lab slip but I never went in for the blood draw...I was in a hyperT flare-up at the time and if it would have shown up in the labs she would have decreased my meds.

    I'm so sorry you're in this mess with all of us...it's a bummer for sure! I truly hope you're able to get some relief from your symptoms. If I come across anything I'll make sure to share it!

    Love and Prayers, Kelly

     
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