not crazy? I have Hashimoto's Thyroiditis What does this mean now?

[LovleyRobin]

SO I have a number 23 antibodies what does that mean? and a 7.7 tsh what do I do now? Im only 32 and was wrongfully diagnosed as a bi-polar 5 years ago. They were wrong. I have Hashimotos and everyone thought I was crazy. They made me take depakote and Temazepam and told me that if I didnt I was having an episode. I felt like a zombie and no one would listen, Finally now I have been diagnosed with hashimoto's Thyroiditis. I cryed when I saw the symptoms, this is it this is what I have I'm not crazy!!! You dont know how it feels to not be crazy but to be sick and now what!! Any advise?

[kitkat737]

diagnosed a month ago luckily it was found rite away.... on synthoid  25mg a day   had more test a mth later... showed  the 25 mgs   is enough  but hasimotos is still active still producing antibodies/   is that good or bad how does that affect me?

ultra was negitive   feel a lot better

[hashi53]

This is wonderful. I was diagnosed recently after a sonogram of my thyroid showed a nodule and I had 1/4 of my thyroid surgically removed. I am slowly trying to learn all I can about Hashimoto's. It is great to find you all.
I don't do gluten, try not to do dairy, no soy, no tea, no caffeine, no alcohol and try to avoid certain foods that are supposed to not be good for people with Hashimoto's. I am glad at age 57 I know what is wrong with me. I am thankful I know. I just got my Levoxyl upped to 125. I kind of wish the surgeon had just removed the thyroid, but he didn't so my doc said i might have to have surgery in the future...we shall see.
I look forward to posting and commenting here.
Thanks for being here!

[Barb135]

I want to clarify -- I am not seeking legal action against any doctor.  Unfortunately, there are all too many doctors who believe the same way and are quick to diagnose depression and pass out the antidepressants.

You do need to find a doctor who will treat according to symptoms and FT3/FT4 levels.  If you don't feel right and your doctor won't listen to you, you may need to go to the emergency room.  If you are being over medicated, this can be dangerous.  

There are websites you can go to and order your own tests if you want to.  You can check out healthcheckusa.com for one.  I purchased TSH, FT3 and FT4 from them a while back for $85, because it wasn't time for my regular blood work, but I felt that my levels were off.  I was right.  

[LovleyRobin]

It's only been 8 days and I'm feeling really weird, My whole body feels tight,like its gonna explode. I am very nervous anxiety attack, cramping. in my legs, restless feet. Today I woke up ok but I had to nap in the afternoon, I'm just so tired, I feel so terrible. I am so thankful for my wonderful family for putting up with me and everyone in this forum for listening to me.:)
Tomorrow I will find a new doctor who will do a FT3    and this time I wont take no for an answer!!! All of you have given me the confidence and knowledge to speak up for myself and receive the medical care and treatment I so desperatly need.  Thank you thank you thank you!!!!

[allyc27]

Wow she sounds horrible, but theres so many crappy docs just like her! I hope you find a good doctor soon. It makes a hell of a difference. You definantly need to get that FT3 test as thats the most powerful thyroid hormone. Doesnt matter if ur hypo or hyper...shes clueless!
How long have u been taking 150mgs? Its very high to start on but if its working for you then thats good.
Just for the recored I too was put on antidepressants for months before being properly diagnosed or tested, those days were the lowest of my life!

[LovleyRobin]

Thank you so much for sharing your story. I am in tears right now and feel so sorry that this happened to you too. It is wrong what happened to us. Now that I know I'm not the only one I am seeking legal advice and will pursue this with a passion!!!!

in other news:

Currently my endo says I dont need a free t3 because that is only done for hyper, not hypo.... hmm? I am awaiting an ultrasound as soon as my insurance approves it and will post my results. And she kept me on 150 dose she thinks that is good. I didnt get any new info from her in fact she was rushing thru things and diddnt seem interested in listening to me. My 12 year old daughter was with me she is a type 1 diabetic and she said mom I dont want her to be my doctor, she rushed us out the door. I want someone else. I think I need to take her advice.

[debbie0413]

So glad you found this forum!  The lovely folks on this board will help you ask the right questions of your doc.  As everyone here says, ALWAYS be sure to call your doc before you make any changes in med dosage or other treatment.  I believe hyper symptoms to watch out for would be major changes in your physical and emotional well being, such as heart palpatations, intense anxiety/panic attacks that you haven't had recently, sweating, trouble sleeping, new hand tremors, alternating bursts of energy and then exhaustion, etc.  Anything like this should be reported to your doctor.

[Barb135]

The labs look more reasonable now.  At 0.91, your FT4 is low in it's range; that could cause symptoms.  Most of us need our FT4 to be at least mid range and FT3 in the upper 1/3 of their range.  You really need to get an FT3 - that's the one that will affect you the most.  

I believe that 150 mcg is too high to start, but if you've already started and not having issues, you might be okay.  It's just that you may never really need that much; it's possible that you could reach your optimal level before you even get to 150 mcg.  You should talk to your doctor and see if you can go up more slowly.  

I'm not a proponent of "self medicating", but you could split your 150 mcg tablet in 1/2 to get 75 mcg or quarter it for 37.5 and go up more slowly.  I'm just afraid of your going hyper.  Talk to your doctor first.  

The high thyroid peroxidase antibodies (TPOab) indicates that you have Hashimoto's Thyroiditis, which is the main cause of hypothyroidism in the US.  Have you had an ultra sound to see if your thyroid is swollen/inflamed?  With Hashimoto's, the antibodies will attack and eventually destroy your thyroid, so that it no longer produces any hormone on it's own. You will need to supplement with the thyroid med for the rest of your life.  Once you get your thyroid hormone levels at a point that's good for you, you should do fine.  

Sometimes, getting things regulated can be a pretty rocky road, depending on whether or not, your own thyroid is still producing hormones, which your might still be.  The whole thing of getting regulated, takes a lot of patience and your med may need to be adjusted at different times, but you can get there.  

And do try to get that FT3.

It's very unfortunate that all too often doctors want to put us on antidepressants, etc when a simple blood test can give volumes of information.  I had a doctor put me on antidepressants also for fatigue; I now believe I was hyperthyroid, but ultimately ended up hypo, which is where I am now and will stay, without my thyroid med.  I only stayed on the antidepressants for about 2 weeks; felt horrible so quit taking them - also quit seeing that doctor!!  

[foreverlostmom]

Probably had it the whole time.  I did.  I was also put on antidepressent medication never did any good because obviously it was not the cause.

I wish it was standard practice to rule out thyroid before giving a depression diagnosis.

[LovleyRobin]

oh i forgot in addition to the depakote  they also put me on lexapro and clonazepam (Klonopin), 6 years ago when they told me i was bi-polar, Like I said I felt like a zombie when I took them so for 1 whole year I took them for my family but eventually I stopped after a suicide attempt.  Now Im thinking I had this the whole time. Why didnt they test my thyroid then? I feel like I slipped thru the cracks. I almost killed myself on those mind altering drugs. I need to get a T3free done I will asap. Thx for any thoughts in advance.:)

[LovleyRobin]

Thank you everyone for your comments. It has been extremely helpful....but now I'm scared. Am I taking too much @ 150 mcg of synthroid levothroxine sodium tablets, ups. What will that do to me? There was no FT3 test done. And now I see on the test it says TSH 7.7  Reference interval .450-4.500  But the doctor said these parameters are high and she wants me at 2. and T4 free 0.91 reference intervals .82-1.77. and Thyroid Antibodies Thyroid Peroxidase(tpo) Ab <600 Reference interval 0-34 and antithyroglobulin Ab 23 reference interval 0-40 - So now that I look my t4free looks fine right. its just my TSH is high @ 7.7 and my Antibodies are high at 600. What does that mean to have really high Thyroid Peroxidase (tpo) Ab? Is there anything else it could be other than hashi's? I do have all of the symptoms. Mostly muscle and joint pain forgetfullness I feel like I'm choking on something or like my throat is closing. I'm tired all the time. and  Im sorry if I sound dumb but I just found out this week and am not really sure what this means for my life. Its great to have all of this support from total strangers. I really appreciate everyone. I

[Barb135]

You posted: "TSH=Free T4 TSH Result 7.7 Flag: High Reference Intervals: .450 - 4-500"

TSH and Free T4 are two separate tests.  Did they test the Free T4? or just the TSH?  

If they tested the Free T4, please post that result, along with the reference range, as these are lab specific and must come from your own lab report.  If you don't have a copy of the report, ask your doctor for one, as they are required to provide it upon request.  It's always a good idea to keep copies of your lab reports for your files.  That way you can note on them what dosage of med you were on and how you felt.  When you reach the point at which you feel well, those will be the levels you aim for.  

If they did not test the Free T4, you will that, along with the Free T3 tested. As gimel said - FT3 and FT4 are the active thyroid hormones and you should adjust your med based on those labs and your symptoms.

I agree that 150 mcg levo is too much to start with. You should be starting at only 25-50 and raising it slowly; it's very possible that you will actually hit a good level, long before you get to 150 mcg.

I also agree that you should probably be looking for a better doctor; your current one doesn't seem to be real good with thyroid issues; you need the proper testing AND you need the proper dosage of med, based on the FT3 and FT4 testing, NOT the TSH.  

[foreverlostmom]

Sounds like my situation I was hyper before and during my pregnancy and after the birth of my son went hypo.  But I did not know I was hyper and the doctors did not tell me and did not do anything and my son was born with neonatal graves and craniosynostosis.  I recently found out from my medical records I was hyper when I requested them to try and prove I had a thyroid problem because they would not believe I had a thyroid problem.  well I proved it and finally had a antibodies tested and sure enough I have hashimotos.  It took 7 years...My highest TSH was only 4.xx so noone wanted to treat me but when you consider I went from 0.01 to 4.xx thats a big difference.  No back then I didn't have free testing.  How is your daughter did she suffer any negative effects?

[allyc27]

Yes I would definantly start on 50 or even lower. I was started on 50 and by the 3rd week I was having severe tachycardia and panic attacks. Felt like my heart would burst. Had my heart checked by specialist and its all fine, so it was the meds. So I dropped it to 25 every second day, but now feel so fatigued and getting major headaches. So Im going to increase to 25 every day. Wish it wasnt so complicated!
You dont want to add to ur probs.
All the best.

[gimel]

Based on your test results for thyroid antibodies (TPO ab and TG ab), you have been diagnosed as having the most prevalent cause of hypothyroidism, which is Hashimoto's Thyroiditis.  Many of the members on the Forum also have Hashi's.  I explained in my prior post about the gradual destruction of your thyroid glands that takes place with Hashi's.  

If you will please read it again you will notice how important it is to also get testing for the actual, biologically active thyroid hormones, which are free T3 and free T4.  Also notice my suggestion for proper treatment by testing and adjusting the levels of FT3 and FT4 as necessary to relieve symptoms.  

Personally I am not too hopeful for your doctor being a good thyroid doctor based on the minimal testing so far, plus starting you on 150 mcg of levothyroxine.  That is way too much to start with and sometimes leads to hyper type reactions.  A more conservative dose would be to start with 50 mcg per day for 6 weeks and then go back for testing.  It is far better to increase slowly (maybe 25 mcg per day) every 6 weeks than it is to risk a hyper reaction and have to go through that and start over again.  I think you should start looking around for a good thyroid doctor while waiting for your next appointment.

[LovleyRobin]

My test says Thyroid Antibodies
Thyroid Peroxidase (TPO) ab    Result: <600 Flag:High Reference Interval: 0-34
Antithyroglobulin ab Result:23 REference interval: 0-40
when I asked about this test they told me it should be negitive, I askede what it ment <600 and the reference intervals whats that she said not to look at those numbers that it ment i was positive for hashimoto's because antibodies are present in my blood.
And
TSH=Free T4 TSH Result 7.7 Flag: High Reference Intervals: .450 - 4-500 She said that it should be about 2 for someone my age 32. and to take 150 mcg of synthroid levothroxine sodium tablets, ups. One per day for 6 weeks then retest..

I have felt sick for about 12 years since the birth of my first daughter and now I finally know I'm not crazy I really have a reason for being so sick. I have every symptom on the list and then some!! Please if you have any advise on what that <600 and 23 antibodies mean please clue me in. Truly,-Robin

[gimel]

With Hashi's, the autoimmune system is triggered to produce antibodies which attack the thyroid glands over a protracted period of time and eventually destroy the glands' ability to produce thyroid hormone.  Increasing thyroid medication is required to offset the gradual decline in natural thyroid hormone.  In order to best monitor and treat  a patient it is recommended that the biologically active thyroid hormones (free T3 and free T4) should be tested and adjusted as necessary to relieve symptoms.

TSH is a pituitary hormone that is affected by so many variables that it is totally inadequate as a diagnostic by which to medicate a thyroid patient, so you should request that your doctor test for the actual, biologically active thyroid hormones, FT3 and FT4.  If your doctor resists, then you should just insist on it until you get agreement.  You should also find out if the doctor is going to be willing to treat your symptoms by testing and adjusting FT3 and FT4 without being constrained by resultant TSH levels.  If not, then you will best be served by finding a good thyroid doctor that will do so.  

When you are tested for FT3 and FT4, along with TSH, then always get a copy and keep for reference.  The doctor is required to provide a copy upon your request.  When you have the info, if you will post the test results and reference ranges shown on the lab report, then members will be glad to help interpret and advise further.

[giules90]

Hi there,

So pleased for you that you have finally been diagnosed correctly, it ***** when they palm you off. There are lots of very kind and helpful people on this forum who may be able to advise. First off tho you will need to post your exact blood results if you have them with the reference range (they differ from place to place)
I have hashi's too so sympathise with you and finally having a real answer as to why you feel the way you do is at least a start. Has your doctor started you on any thyroxine yet? Or referred you to an endocrinologist? If your doctor isn't at all helpful or seems uninterested in how you are feeling find another one fast, there are some good ones out there. I have been fortunate in that my doctor referred me straight away once my bloods came back and my TSH had almost doubled in 3 months and my antibodies were way over normal. I have now been given thyroxine (as of today) but will have to wait a few weeks to see if it helps..the waiting reeaallyyy ***** but unfortunately it seems is a necessary evil when it comes to trying to feel 'right' again.
It's probably gonna be a long road (as with us all I feel) but this forum is a great source of support and you realise you are not alone in how you feel.
I wish you all the best x