Test Results--Please Help

[smalltowngirlusa]

Hello~I am a 39 year old female who has been treated for hypothyroidism for 13 years.  I had been taking 100mcg of Levothyroxine until 2006.  At this time my doctor raised my dosage to 112mcg.  I noticed a great improvement for maybe 6 months and then I went back to feeling terrible.  I had my TSH tested in August of this year and the level was 5.688.  My doctor raised my Levothyroxine to 125mcg and left town. LOL  Seriously, he did.  He told me to follow up with another Dr. and get my level tested again.  I found a PA who ran T3 Free, T4 Free, TSH, and Anti TPO ab.  My T3 Free is 2.9 (range 2.4 - 4.5) T4 Free 1.30 (range 0.75 - 2.0) TSH 1.727 (range 0.350 - 5.500) anti TPO ab >1300 (range 0 - 50).  I feel terrible.  I have not noticed ANY difference on 125mcg.  My musles and joints hurt something awful, they twitch and spasm.  Brain fog, forgetfullness, TIREDNESS, weight gain--can't lose a pound if my life depended on it.  Moodiness.....I could go on and on and on.  The PA has ordered a Ultrasound of the Thyroid for next week.  I believe I was tested for the antibodies years ago but they were negative.  How come the antibodies are SO high and the TSH is lower??  Could the thyroid STILL be making me feel this bad??  Please give me some insight, information....anything.  I truly appreciate your time and consideration.  (NOTE-I was diagnosed with Fibroymalgia in 2003 by a Rheumotologist.....I BELIEVE my problems are MORE thyroid than that......the symptoms seem to be so close???)
NOTE:I posted this earlier but with a different title, I think I might have needed a different one.  SORRY

[smalltowngirlusa]

Boy you remind me of me! LOL  Every once in a while I will get a little spurt of energy and feel really awake and think, "WOW, this feels great!!"  I wish it would last longer but I guess even a little is better than nothing.  I DO think it makes one a better person.  I can't always feel good myself BUT I can make those around me feel good and the result of THEM being happy does help ME to feel better. :)

My ribs have hurt so bad that I can't lay on my sides at times.  My hips will do the same thing some times.  It's miserable.  Knock on wood they haven't bothered me lately.  I THINK the vitamins help that too......call me crazy but I think some of us have BAD deficiencies....maybe the thyroid problems depletes us.....of course I don't know for sure but its helping me.

Nope, no insurance still.  We are self employeed and can not afford it.  We do ok but we're not getting rich any time soon. :)  I'll have to check into the blood labs things you spoke about.  ANY help would be wonderful!  The cyst thing is funny.  I haven't been diagnosed with PCOS but I have cysts rupture at least every other month.  I've gotten accustomed to the pain.  Sometimes it's not bad other times it's miserable.  The one last January ruptured an vessel and I lost ALOT of blood, I went down 4 numbers in my count.  They thought they were going to have to do surgery but THANK GOD the blood count leveled off.  I was sent home and I was in BAD shape for about a month.  I PRAY I never have one like that again.  I think the thyroid problem messes with hormones too!!  

It is scary isn't it when you just KNOW "something" is wrong but it doesn't have a name.  Sometimes I fear that something HORRIBLE will pop up with all the suffering I have been through.  If it stay Hashimoto's I'll be thankful, there are SO many worse things.  I pray some answers and RELIEF come your way.  You're so young and trust me I KNOW how it feels..........You keep your chin up!!
Tracy

[borninquisitive]

Yes, me too...I no longer know what it's like to feel good. It's a very distant memory. What is odd, there is can be a split moment, I remember/sense it. Then it's gone. I now realize, that I took so much for granted when I was healthy. On account of this, in one way, it's made me a better person. Anyway.

The muscles in my shoulders and neck hurt the worse. Strangely, I get left rib pain. Like you my head can feel like it weighs a "ton" and my posture reveals it. I am constantly reminding myself to sit/stand straight. As for Fibro...I think the symptoms are REAL but I do think there are causes, outside this supposid singular diagnosis.

Oh, not having insurance! ;-[ Even having insurance and having to pay the remainder, can be "tough news." The bottom line is, though..."you gotta do what you gotta do." Never-the-less the cost of health care really bothers me.
As for your cyst, did they determine the cause? I know that there is a higher incidence of thyroid dysfunction amongst P.C.O.S. patients.

If you are still uninsured, have you looked into healthcheckusa for blood labs? I think they come cheaper than private labs.

As for antibodies (A.I.) Funny because in the begining, researching...everything I landed upon was an A.I. disorder. My very new doctor (Internist) after hearing me, said that what I describe smacks (not his word) of an A.I. disorder. We think it's the start of thyroid dysfunction. God forbid and I pray, it's nothing else.

I personally do not have hope that everything will resolve on it's own,  beings that it's been 2 years worth of feeling like ****. Something isn't right and it's a matter of watching the labs. Until I satisfy their criteria...I'm on my own with this.

~Kate

[smalltowngirlusa]

LOL  We do seem to settle with "feeling fine" don't we??  I hardly remember what GOOD feels like.  Shouldn't be that way for us but sadly enough it is. ;(    I'm going to keep up with my vitamins as best I can, it does help.  I also get the eye and lip twitches!!  The muscles in my upper back and neck are the worst.  Sometimes my head feels like it weighs 1000 pounds!!  They related this to Fibromyalgia but who knows??  I "THINK" even the muscles seem more relaxed when I stay up on my vitamins.  I'd LOVE to have all my levels checked for deficiencies but without insurance it's hard.  I had a large ovarian cyst rupture last January and less than 24 hours in the hospital cost me $12,000.00  :(   Being sick, feeling bad, needing HELP is even worse when you know you have to pay for it all yourself.  I've decided "I'M" more important than money though.  Sooner or later they will all get paid off.  As human beings we deserve to feel kinda sorta good at least! LOL

The antibody thing is weird.  Several Drs. suspected OTHER autoimmune diseases but didn't check for this one.  I pray nothing else creeps up.  I know so many others suffer with multiple things.  I feel fortunate to just be dealing with Hashi's.  

I hope you get in range and start feeling SUPER good.  I'm keeping EVERYONE here in my thoughts and prayers.  We all ride in the same boat.

Tracy

[borninquisitive]

I have certainly heard that those with Hashi have nutrional deficiencies: B-12, Ferritin (Iron) and Vitamin D.

I gave birth to my last son 3 1/2 years ago. Like usual (in preganancy) I had terrible calf/toe spasms (not to mention bad teeth). In previous pregnancies, they abated after delivery. With my last one, it did not. Finally, I turned to (I rotated the two) Cal/Mag/Po or Cal/Mag/Zinc supplements. The spasms/twitches continued but finally began to slow and finally stop. That said, I have run out of my supplements and hey, under my lip and eye have been twitching again. As well, getting some "tics" (knee suddenly jerking to the side)
I've felt my toes try to go into spasm but haven't gone full blown. I've also recently ran out of my MV with high B Complex. I haven't ordered yet as I want to order for a few family members as well. Anyway.

It's good to know about antibodies i.e. autoimmune disorder. Unfortunately, having one may lead to another. This doesn't mean a person will develope another but it's good to know, should other things crop up.

I'm not feeling so great-far from it. Currently my TSH is being watched. I have somewhat elevated TgAbs. As well as elevated Testosterone, Dheas and bad Cholesterol. No meds, save for Prilosec.

I'm glad that you have found that supplements have helped you some. I think they have helped me. Not enough to feel fine...but I will accept feeling better. lol

~Kate

[smalltowngirlusa]

Interesting again!!  I'm thinking it IS related.  For me personally, now that I KNOW I have the antibodies I think I've been having on and off spurts of too much too little hormone!!  It makes perfect sense to me at least. LOL  I "may" need just a little more medication, but then again I don't want to go hyper.**SIGH**  I can't wait to get this US done and get back to the office to talk to the PA.  It's like a lightbulb is finally being turned on.  NOW, I just have to get rid of this brain fog.  I don't know if it happens to others but my mind just seems to NOT work sometimes.  I will read things the wrong way, get words all turned around when I'm talking.  I really hate that. ;(

[kitty9309]

Just before I was diagnosed, both hands began falling asleep when I woke up to take my Synthroid. The numbness quickly goes away, it is just weird. That has improved since I began meds. It still happens sometimes, just not everyday. It is hard to think that it's not related!

[smalltowngirlusa]

That's interesting Kitty.  For "me" it "seems" to help.  Might be my wishful thinking.  Maybe it's when my Thyroid is raging I twitch.......I dunno??  I hope the higher dose helps you!  The twitches are AWFUL!  Have you ever had your fingers go tingly??  On my left side my last three fingers will occasionally gets tingly and a little numb feeling.  That is freaky!!  Don't know if it's thyroid related or not.  All kinds of WEIRD things happen to me. ;)

[kitty9309]

My muscle twitches did not stop with magnesium supplements.

The neuro I saw for the vertigo said that he tested my thyroid because of the muscle twitches.He said my thryroid wasn't the problem.

I have been on synthroid since Sept and I think they have diminished a bit. I have only been on the higher dose for 2 weeks, si I am waiting to see if it improves as the TSH drops to normal.

[smalltowngirlusa]

I'd say your personal opinion is right on track. ;)  I didn't know about the antibodies but I'm sure glad this new PA decided to test them.  Now I just have to get past the US next week.  Do you think any new course of action will be taken now that antibodies have been found?? The TSH is down so I didn't know if they'd mess with the meds or not.  

You know, I have been taking Cal/Mag/Zinc, Vit. E, Vit. B12, and a MultiVitamin.  I DO notice the twitches less when I take them.  My joints are less sore to the touch as well.  I posted a thread earlier today about this.  I wonder if it is a common connection in Hashimoto's/Hypo??  I do believe you are to wait at least 4 hours inbetween your thyroid medication and the supplements.  I take my Levo first thing in the morning and all my vitamins before bed.  It seems to work out okay for me.  

Thanks again for the input!!  I hope you are feeling good as well!!  ((HUGS))
Tracy

[borninquisitive]

Well glad I was of help afterall. lol My personal opinion is that if somebody comes in with complaints, that sound suspicious for thyroid, that both TSH and Antibodies should be tested.

As for twitches/spasms: I used to experience these and it was horrendous! July 4th was the last time (knock on wood!) I began taking a Magnesium combo. If you consider this, read up as I do not think you are supposed to take it within x time frame of thyroid medication.

I hope you begin to feel better, soon Tracy.

[smalltowngirlusa]

You were extremely helpful!!  Your info helped me confirm WHY my PA said I have "Hashimoto's" :)
Your information was great.  Please feel free to add input ANYTIME to me.  I truly appreciate it!! :)
Tracy

[borninquisitive]

On that note, I wanted to apologize. I didn't think I could add anything useful for you, personally. If I respond to a thread, most times-it's because I think I may be able to help the person personally. Sometimes not but add to what is being said/questioned by other posters.

[smalltowngirlusa]

WHEW, glad I didn't come in here and start things up. :)  Yes, different view points are great, most of the time you can get something out of every different opinion.  Shoot, no two Drs. seem to be able to agree on things so how can we?? :)  I've bounced in and out of SO many different Dr. offices I can't see straight.  Funny thing, not ONE of them checked for antibodies!!  They checked for different kinds of autoimmune diseases but NOT Hashimoto's all the time KNOWING I was being treated for hypothyroidism.  How silly is that??  I'm BELIEVING ALL the symptoms I've had are a result of the thyroid flaring and settling!!  The numbness and tingling was checked by a Neuro, had EMG'S.  Aches, pains, spasms checked by Rhemy who said "Fibroymalgia"  She checked for RA, Lupus.......Had all the gastro stuff worked up.  Had EGD.  Oh well, it was nice hearing there wasn't something DEADLY found.  What a roller coaster we all ride.  

[kitty9309]

Don't worry- the debate has been going on since long before I joined this forum in Sept. And I'm sure it will continue after I go... In the end, I guess different viewpoints are good to hear. Hooray for a free society!!
I like your attitude!

[smalltowngirlusa]

Yes, maybe I should have mentioned she did say, "Hashimoto's"  I suppose I was still trying to get a grip on the diagnosis myself.  The nurse was very clear to me, thus the reason for the ultrasound.  I didn't mean to start a debate. ;(  I guess we all learn different things from different doctors and different things work for different people.  One person sees black another white, I get that but ultimately we are here to help each other out.  Thanks for your input!!  

[kitty9309]

I'm glad you are taking charge of your health. WE have to trust our instincts about our bodies- we know how we feel, not anyone else.
I see that the PA DID say you have Hashi's- good, because you do.
Sorry about the debate raging on this forum. Just trying to get correct/up to date info out to all who question their diagnosis.

I love the "pay it forward" philosophy!!

You are welcome!!

[smalltowngirlusa]

Thanks everyone for your input.  I will stay on the 125mcg of Levothyroxine.  If this is the "best" I will ever feel then I guess it is.  The lower doses DID NOT make me feel any better.  I felt GREAT for maybe 6 months on 112mcg but then it was bad again.  At the end of a year on that amount my TSH went from 2.80 to 5.688.  After being on 125mcg for 90 days my levels dropped to 1.727.  Other than the level dropping I don't feel any different.  My PA DID say my thyroid felt "full" on examination.  The nurse who called me with the results DID say the PA called this "Hashimoto's".  As I mentioned she is having an ultrasound done on me next Friday because of the presence of antibodies.  SO, I'm assuming based on the 14 years I've been subclinical hypothyroid she is diagnosing "Hashimoto's" BECAUSE of the antibodies, the swelling of the gland itself I assume is another part of it.  My levels have fluculated for years, high 4 was MURDER for me.  I'm just trying to UNDERSTAND and take an ACTIVE part in my disorder.  I really appreciate you all taking the time to help me.  I will pass on what I learn from you to others in need.  Pay it forward so to say.  :)THANKS again.

[borninquisitive]

Table 2. Guideline for the diagnosis of Hashimoto's thyroiditis (Chronic thyroiditis)

1. Clinical findings Diffuse swelling of the thyroid gland without any other cause (such as Graves' disease)

2. Laboratory findings  

a. Positive for anti-thyroid microsomal antibody or anti-thyroid peroxidase(TPO) antibody  

b. Positive for anti-thyroglobulin antibody  

c. Lymphocytic infiltration in the thyroid gland confirmed with cytological examination

---

1. A patient shall be said to have Hashimoto's thyroiditis if he/she has satisfied clinical criterion and any one laboratory criterion.Notes

a. A patients shall be suspected to have Hashimoto's thyroiditis, if he/she has primary hypothyroidism without any other cause to induce hypothyroidism.

b. A patient shall be suspected to have Hashimoto's thyroiditis, if he/she has anti-thyroid microsomal antibody and/or anti-thyroglobulin antibody without thyroid dysfunction nor goiter formation.*

c. If a patient with thyroid neoplasm has anti-thyroid antibody by chance, he or she should be considered to have Hashimoto's thyroiditis.

d. A patient is possible to have Hashimoto's thyroiditis if hypoechroic and/or inhomogeneous pattern is observed in thyroid ultrasonography

* Some clinicians don't use the term Hashimoto's thyroiditis if patients have no goiter, although association of positive antibodies and lymphocytic infiltration in the thyroid gland was proved by histological examination.

In looking at the diagram:  Figure 7. Diagnosis of Hashimoto’s thyroiditis (chronic thyroiditis)

If a) goiter and/or b) signs of hypothyroidism--it points to testing TPO and TgAb. If possitive it points to Hashimotos thyroiditis.

When you add in the bigger picture...ee yeah.

Thyroid Manager, under Hashimoto's thyroiditis.

[GravesLady]

antibody presence or absence does not change the diagnosis of subclinical hypothyroidism (which is based on serum TSH measurements) or the expected efficacy of treatment. US Government Guidlines 2004

Thyroid antibodies may remain positive for years, and do not provide an indication of whether the person has normal or abnormal thyroid function. Furthermore, some patients with Hashimoto's disease may have negative levels of circulating antibodies, and conversely, patients with positive levels of thyroid antibodies may never develop thyroid disease during their lifetime. mythyroid

People with chronic thyroiditis,other thyroid diseases, other autoimmune disorders such as Sjögren syndrome, lupus, rheumatoid arthritis, and pernicious anemia  and people may have  no evidence of disease, are sometimes positive for antibodies. Therefore, thyroid levels are the prevailing diagnose. medicinenet


Currently, there is no treatment capable of stopping the autoimmune process leading to Hashimoto's thyroiditis.
Presence of these antibodies is not enough for a diagnosis of Hashimoto’s thyroiditis, since a certain percent of women in the population have these antibodies.
Johns Hopkins Autoimmune Disease Research Center

  

[kitty9309]

One extra thing I would recommend: Do not change your dose w/o  letting the doctor or PA know what you are doing. You need to let them know what lower dose you felt well on. They can't make you take a higher dose.

The high antibodies and high TSH confirm that you have Hashimoto's.

If you have antibodies actively attacking the thyroid, then eventually the thyroid may not make enough thyroid hormones for your body to function well. Once your pituitary realizes that you don't have enough hormone, it will send more TSH (thyroid stimulating hormone) in an attempt to get your thyroid to compensate by making more thyroid hormone.Eventually, this feedback loop may not work so well. That's when the TSH is high and T4/3 are low because the thyroid is not able to produce the amount of hormone your body needs.

So, thyroid antibodies can have an impact on the TSH level.

[GravesLady]

TSH and antibodies have no influence on each other, they are separate indemnities.

Your levels look good.  If levels are within your Labs reference range and plenty of time has been give for healing and that depends on how much damages was done, thyroid symptoms should just about be neil.
Thyroid treatment is not necessairly 100% cure-all for symptoms for they might be caused by other health conditions that mimic thyroid symptoms, to where each symptom needs to be treated separate from each other and from thyroid.  

The only thing I would suggest is out of the three doses you were on, pick the one that you felt your best on and go back to it. You might be one of many who feel better at a little higher TSH.

You might go to the Doctor Thyroid Forum and ask Dr. Lupo at http://www.medhelp.org/forums/show/120      OR
at left of page almost top, under "Thyroid Disorders" in red click on "thyroid" it will take you to the forum.
If you have posted more than one post per the sites rules for doctors forums, you probably won't get answered.  Or if the forum is full and not taking any more questions for the day, you can try another day.

Sorry I wasn't much help.  I wish you the best in finding solutions and inhealing.

[smalltowngirlusa]

Oh please don't feel like that.  I totally understand your ranting.  I've felt like that too.  I've just resolved to believing this is HOW life is for me, it's WHO I am I guess.  Maybe that is wrong but for "me" it seems to make it more easy to handle.  :)  One day, I HOPE too, I will wake up and not feel pain. It's a physical as well as emotional drain.  Not being able to do all I want to, especially with the kids hurts me more than anything.  They tell me I do more than I should but something always tells me I SHOULD be able to do more.  Shoot, I probably push myself too much and that makes me hurt more.  I've just found seeing people SMILE helps me. :)  I can come here and rant though, you guys UNDERSTAND.  I hope you feel better soon too, we just can't give up~~

[AR-10]

I don't know what to say.

Your last post makes me feel lucky, and foolish. I just posted a big whiney fit about how awful life is.

I hope you find the right doctor and the right treatment. I hope you wake up one morning and feel GREAT again. I really do.

[smalltowngirlusa]

You know what is kind of sad now that I think about it?? I don't remember what it feels like to feel GOOD.  I'm constantly in pain, tired, fogged, it's never ending.  Somewhere I guess I just decided to put up with it and make the best out of life I could.  No one should have to settle though should they?  It's not right to have to live miserable all the while you are doing your best to make those around you happy.  I think I focus on making others as happy as I can, I guess that makes me feel some better.  I just want to KNOW what it is like not to feel so yucky.  I'm praying something comes out of these new tests.  I've been giving the "fibromyalgia" diagnosis and NOW I'm quite positive it's been my thyroid the WHOLE time!!  That makes me feel sad.  Hang in there, you're not alone.  I certainly can relate to you! :)