antibodies + slightly high TSH

[knicknack]

Hi everyone-

I know this isn't a diagnosis forum, but my doctor told me that I have the antibodies for hashimoto's thyroiditis and slightly high TSH but she didn't think I needed treatment. I wanted to run it past people who might know more than me.

Essentially, this is my story:

i've been tired ever since I was a kid, to the point where I've been tested for everything known to man for it. My thyroid levels were always fine (but this was the first time anyone looked for the antibody). In the last few years the tiredness has gotten out of control, I literally can hardly do anything. In addition, i've been plagued with sinus infections, asthma, depression, etc... I've also started gaining weight, and I was always SUPER thin growing up, no matter what I ate (I'm 33). In the last 2 years, I've gained weight for various reasons (diet, drugs for depression, etc..) and can't get it off without doing hardcore atkins. I haven't been able to concentrate, feel like I'm living in some kind of weird vaccum, etc... which has been a problem at work. My periods started getting irregular when I wasn't on the pill (ever 2-3 weeks or so). My hair is falling out in handfuls.

This summer, it got immeasurably worse. I never want to do anything, I'm always exhausted, my muscles feel like they can't function anymore. I was getting my period every 2 weeks with spotting in between. I have *no* sex drive. at all. I couldn't concentrate at work, and the only way to get anything done was to panic about it (literally) or to overdose on caffeine to get the adrenaline going. Finally, I freaked out enough about it (again, for like the tenth time in my life) to go to the doctor about it. So, I went in and she told me that thyroid problems would explain everything 'nicely' so I had bloodwork.

She's the first doctor that did the antibody test and whattya know? I have them. I also, for the first time ever, had a slightly elevated TSH. But, because it was only slight, she doesn't think treatment is needed. I've done some reading since then though, and it seems that a) i have every symptom practically for hypothyroidism and b) some doctors advocate treatment for people with the antibody's with normal to slightly elevated TSH.

So, does anyone here have any experience that they could share with me? i've only read a few medical articles about hypothyroidism but man, it sure seems like I have it, whether or not my levels are high enough. Has anyone been treated when their levels weren't out of control necessarily?

I really need some help. I can't work, my friends have all stopped calling me. My boyfriend is miraculously still around even though all I do is sit around and do nothing. but, he's frustrated too. I'm shocked I haven't been fired yet.

so help! anyone have any ideas of how i can convince her? An endocrinologist is my next step, but honestly the last one I went to (two years ago, the last time i freaked out enough to go to the doctor and it wasn't even nearly as bad as it is now) almost threw me out of her office because I 'wasn't fat enough.' So, I'm dubious there too.

[2big4mysize]

Re: antibodies + slightly high TSH

I have Hasimotos too. DId your doc do a complete thyroid panel and check your free T4 and T3 levels?

you can have normal TSH and be hypo if you have secondary Hypothyroidism like Sarah recently found out she has.

If you are symptomatic but near normal they call it subclinical hypothryroid. did you know in 2002 the Endocrine Society lowered the standards from 3-5 TSH to 3.0 TSH for the cut off for hypo?

also are you eating any foods listed in the goitrogen topic stickied in this forum? if you recently added any you can interfer with your conversion of the T4 to T3. cold meds like suedafed can effect it too as can all soy containing foods.

[knicknack]

Re: antibodies + slightly high TSH

Hi 2big-

Okay, I got my latest numbers, but I don't have the first set.

The first set was about 3 weeks ago (about 3 weeks into atkins), and my TSH was 'slightly high', with the scale they're using being .4 to 5.5. So, I'm not sure exactly what my number was, but they're definitely still using the old scale so I'm guessing it was something like 4 or 5.

The blood from friday, my TSH was 1. Yep, ONE. (My iron was normal too). So I have no idea. I don't feel any better, but who the heck knows. Can the levels go up and down like that? Is there anything that would affect it? I've been on atkins longer but as far as I know diet doesn't affect thyroid does it?

She did not do a T3 or T4 test, no. I'm thinking of going to an endo to see if I can get a little bit more help. I've found some articles (academic) that show that treatment can help subclinical hypothyroid people who have symptoms, as well as prevent the actual onset of hypothyroidism (which is inevitable if you have the antibodies, correct?).

I only talked to the nurse. I'm waiting the outcome of another test (a genetic test for hemochromatosis) and the nurse said she would have her call me. According to the nurse, it's hard to get a doc to prescribe meds if you've got 'normal' ranges, but at the same time my doctor is really good about finding out what is wrong with you. SO, here's hoping.

[2big4mysize]

Re: antibodies + slightly high TSH

when you are slightly high for that range that would mean you were over 5.5 a bit. now you are back to 1 without any medical treatment wow! you must have been consuming something that interferred with your T3 unless you were having an active bout of Hasimotos Thyroidistis then and not now. what did your doc say about the numbers? ask your doc about doing a complete thyroid panel before you go to the endo.

[DAWNIMMEL]

Re: antibodies + slightly high TSH

I have Hashimoto's also and I was diagnosed 13 years ago. My family doctor immediatley put me on synthriod and monitored my levels. It is from this forum I learned that with a hypothyroid your TSH levels should be between 1-2 and that is why I went to an endocrinologist. She is wonderful and from the Mayo Clinic. I was lucky she is at one of the hospitals that I consult for. She found I have a vitamin D deficiency that has caused me to have osteoporosis at the bright old age of 40. She is treating my vitamin D deficiency and I am not as tired anymore. I also am on Antidepressants. Depression can cause you to feel tired all the time too. My concern is you have the antibodies for Hashimotos, so make sure you get a full Thyroid panel done and keep monitoring your TSH. If your TSH goes above 2 you should see an endocrinologist and see about getting on replacement. Also, just so you know. Hashimotos can totally destroy your thyroid. I no longer have any healthy thyroid left. It has been totally destroyed and now is multinodular. An Endo can do an ultrasound of your thyroid and see if there is any damage. Best Wishes to you and let us know how you make out........Dawn

[knicknack]

Re: antibodies + slightly high TSH

That's my worry - because it was above 5.5 the first time and 1 the second time, it seems like I'm already seeing the effects of hashimoto's. I've also seen a lot of articles that say that treating people with the antibody but with normal/slightly high TSH levels helps to prevent further degradation of the thyroid.

I really hope my doctor will help me out. I don't think I could possibly have been eating anything the first time that would elevate my levels, as I was eating exactly the way I am now. I wish it were like blood sugar, where there was a home test so you could follow it more closely. *sigh*

[knicknack]

Re: antibodies + slightly high TSH

one more question: if you have the antibodies for hashimoto's - they don't go away, correct? It's not like you can have the disease one day and then not the next?

[2big4mysize]

Re: antibodies + slightly high TSH

nope you got it for life and need to be checked anually once your symptoms are controoled BUT it can cause an inflamation of your thyroid in a flare up and then drop back down again like all autoimmnune diseases.

[knicknack]

Re: antibodies + slightly high TSH

Aha! I bet that's what happened then.

So, how should I proceed with trying to be treated? If it can flare up and be a problem there's no real way to know, right? I wonder if that explains the hair loss I was experiencing back then that is now gone. Hmmmm.

I'm sorry for all these questions but I'm concerned that my doctor isn't going to do anything about the way I've been feeling, you know? *sigh*

[2big4mysize]

Re: antibodies + slightly high TSH

call your doc and ask point blank how she intends to treat your Hasimoto's and do you need to be seeing a specialist to preserve your thyroid function and other organs as many Hasimoto sufferers develope other autoimmune illnesses too. if your doc is unfamilar with it as many GPs are ask to be sent to see an endo

[DAWNIMMEL]

Re: antibodies + slightly high TSH

I just love my GP's but they really didn't know how to treat my Hashimoto's properly. When my GP found out I was seeing an Endo she was glad. She wants me to continue to see the endo. When I was first diagnosed with Hashimoto's I was also diagnosed with Cytomegalovirus no connection, but we didn't know which flare was causing my horrible joint pains and fatigue. I was tested for every autoimmune disease there is. I would ask my GP how he/she is planning on treating the hashimotos and if you are not satisfied then go to a good endo. That is what they specialize in..........Dawn

[knicknack]

Re: antibodies + slightly high TSH

Hi everyone, thanks for your help!

Yeah, I need to find a good doctor if this one is hesitant to treat me. *sigh*

So here's 2 questions that I can't find answers to:

1) can you have high antibodies for any other reason than hashimotos? Things like stress, diet, or whatever?

2) Is it possible to make the antibodies go away? I'm guessing no, but I keep hearing things like 'change your diet' etc.. and that just seems weird to me.

Thanks again for all your help! I really appreciate it.

[2big4mysize]

Re: antibodies + slightly high TSH

the type you have are only for thyroids and they are specfic to your thyroid tissue no other body parts

there is no currently availible treatment other then a life time of thyroid replacement hormones. the only diet changes you can make are to avoid any thyroid issue foods like low iodine levels soy and other goitrogens.

[knicknack]

Re: antibodies + slightly high TSH

Thanks 2big, that's what I thought myself. That is what my doctor told me as well, but other people in my life seem to think that I can just make it go away automagically. :P I appreciate the help!

[2big4mysize]

Re: antibodies + slightly high TSH

you are welcome.

seriously make a point of asking your doc about how she is going to be treating you for hasimoto's