Help! Is this Hashimotos?!

[caetlin_h]

Ok, so first and foremost, thank you in advance for reading my post and giving your advice, it is so greatly appreciated!  To make a very long story short, I am 26 years old and have been trying to get a diagnoses for what I believe to be Hasimotos for over three years.  I experience Flares that last for 1-2 months, about twice a year, and each flare comes with SERIOUS fatigue, achy joints and muscles, exhaustion, waking from sleep unrested, difficulty staying asleep, itchy skin, mind fog, etc etc.

I had a series of blood work done back in 2009 several months apart, by various doctors, that showed the following:
March 2009:
TSH- 1.10
Thyroglobulin Antibody- 304
Thyroperoxidase Ab-  98

May 2009:
TSH: 2.64
T4 free: 0.89
T3 total: 102
Thyroglobulin Antibody -328
Thyroperoxidase Ab- 120

June 2009:
TSH 3.66
T4 free 0.77
T3 -129  
*antibodies weren't tested*

Now, at this point my husband and I had been trying to conceive for over two years, and nothing.  Finally in December of 2009 we got pregnant.  I had one flare during pregnancy with serious chest pains and I was tested for everything BUT thyroid function.  Now I'm having my first flare post partum (my baby is 10 months old) and these are my results

August 2011
TSH 0.01
T4 free 1.45
T3 total 223
Thyroglobulin Antibody 844
Thyroperoxidase Ab 1300

SO....of course since my TSH is finally out of normal range they want to put me on meds. But which ones?  And why would my TSH go up for so long, and then crash like this?  Does this sound like Hashimotos to you and if so, which meds should I be going on?  My doctors are completely useless and the only reason I have all of this lab work is because I insisted.  I also want more kids so I'm worried about how medication or lack there of will effect future fertility.  Have any of you ever seen a rheumatoligst for  your hashimotos or only endo's?

Once again, thanks so much! I appreciate all of your help!

[goolarra]

I wouldn't count on this condition being stable at this point, i.e. what only happens a couple of times a year and lasts for a couple of months may increase in both frequency and duration.  What if it happens while you're pregnant?

I think lots of us look back and see where we might have been hypo or hyper or swinging back and forth for part/most of our lives before being diagnosed.  I had the opposite problem from you...if I wasn't starving myself and making a career of exercise and losing weight (through sheer force of will), I was gaining weight.  My body had absolutely no interest in maintaining.  Once on thyroid meds, for the first time in my life, I actually spend months (years!) at the same weight.

It is hard to tell with infants/children.  Don't be too paranoid.  Although children are diagnosed with Hashi's , it's much more commonly diagnosed later in life.  If I were you, I think I'd ask my pediatrician to test your daughter's FT3, FT4 and TSH regularly given your history.  Aside from the symptoms we all have, children can fail to develop properly or to thrive.  Periodic blood work until she's a little older and it's easier to decipher what's going on would do a lot to allay your worries.   Nobody like a paranoid Mom!  LOL  

[caetlin_h]

ok that's great -thank you!

Yes, this will be the last time I see this GP -how crazy is that -no such thing as  FT3?! Gee Whiz!  Well, I'm hopeful that this endo will be helpful tomorrow.  I will bring ALL of my labs, and perhaps we can come up with a game plan for each diagnoses possibility if they want to wait for the TSI results.

The idea of iodine and surgery both completely freak me out -especially where future conceiving is concerned.  I guess the other thing I'm wondering is, seeing as how my flares (for right now anyway) only last a couple months and only come once or twice at the most per year, is it reasonable to think that I could wait on any invasive treatment until I'm finished having children?  I'm thinking that without medication though, that these flares will only get worse and last longer?

If I weren't so young (26) I wouldn't worry as much, but the more I think back, the more I realize that I think I must have had this during adolescence.  As a 16 year old I lost severe amounts of weight and everyone accused me of being anorexic although I never considered myself to be.  Around the same time I also got Mono and had several months worth of several fatigue and exhaustion -so I wonder now if that was my underlying problem.  

On that note, I'm wondering how "paranoid" to be about my daughters possibility of contracting this disease.  It's so hard to tell with infants -but when she's acting tired all of the time, and has appetite all over the show, dry skin, etc -it really makes me wonder.  Does anyone on this forum have experience with small children with this problem?  Are there certain warning signs that I should be looking out for that would appear different than my own?

Thanks so much, and I'll let you know tomorrow what the endo said!!!

[goolarra]

Believe me, the FT3 (free T3) does exist.  If your (have to agree) worthless doctor doesn't know of its existence, I guess it shows that you need a new doctor.  Never heard of TSI, either, huh?  Ooooh, bad news...

However, her skills at getting you a referral to an endo are phenomenal!  That's service!

You have a number of options, and, hopefully the endo will go over all of them with you.  The one your doctor referred to today is RAI (radioactive iodine).  The thyroid is the only organ in the body that takes up iodine.  So, you are given radioactive iodine, which eventually "kills" your thyroid off.  Once your thyroid is "dead" (this can take a while after the treatment), you will no longer swing from hypo to hyper, but will be permanently hypO, and that can be treated with repllacement hormones.

This can also be done with medication, especially if you want to feel more comfortable while you research your options.  It's called "block and replace".  You are given ATMs (anti-thyroid meds) which stop your thyroid from producing hormones.  At the same time, you are given replacement hormones.  The ATMs stop thyroid hormone production, so they stop the swings as well.

Your doctor might have other ideas as well.  I'll be interested to see if he makes a positive diagnosis of Hashi's without the TSI.  You're right, if you have Graves', you usually treat that with ATMs only unless or until you opt for a permanent solution like RAI or surgery, and at the moment, since you're hypER, that would be appropriate.  However, when I look back at your '09 labs, you definitely were hypO, not hypER.  It is possible to have both Graves' and Hashi's (even though it sounds like an oxymoron).  With the '09 hypo labs and the current hyper labs, I just thought it best to have the TSI and rule out Graves' as a possibility.  

I think one of the first things I'd ask the endo to do is pin down a definite diagnosis.    I'd think he might also want an ultrasound and perhaps other imaging.  I'd definitely bring all the lab results you have, including the ones you posted above.   Of course, you'll want to ask him about medication to control your symptoms.  I would think he'd run FT3 as well.  Many doctors don't think FT3 is important if you're hypO, but most realize its importance when you're hypER.  

Best of luck tomorrow...keep us updated on what the endo has to say...  

[caetlin_h]

Ok, so I wasn't sure if I should post a new thread or not, but anyway.  I saw my worthless GP today in order to go over my latest labs and discuss a referral to an Endo.  I also asked her to do the FT3 and the TSI test.  She told me that there is no such thing as a FT3 test, and she'd never heard of a TSI test.  She said, "your other antibody's are up, so what difference does it make about this other one?"  I finally argued with her enough that she gave up and did the TSI test, I only found out upon leaving that she did not do the FT3 (because apparently it doesn't exist)

She managed to get me an appointment with an endo tomorrow which is amazing and never happens, but I'm a little bummed because this TSI test results wont be in yet.  I want to make sure that I make good use of this appointment, so I'm wondering what questions I should be asking.  My GP said that I should consider Iodine treatment to kill the thyroid and then just treat it as Hypo -how would this help?  If I DO have Graves, then why I can't I just treat that? I do understand the possible need if I have the Hashimotos Toxicosis because it would be easier to treat one rather than both -but why with Graves?

Well, any suggestions for questions/comments to bring up with Endo tomorrow would be greatly appreciated.  Oh, and the GP DID say that my thyroid is enlarged, and that my heart rate is up. BP is 120/70 and she noticed the tremors in my hands.

[goolarra]

When you're not having a "flare", your FT3, FT4 and TSH will normalize.  TSI, howver, will yield the same results no matter what state you're in.  Like the other antibodies, once you have Graves' antibodies, you have them for life, even when symptoms go into remission.

I think you kind of answered your own question about waiting for another baby. If your daughter was born healthy and full-term, I would guess that she wasn't deprived of hormones in utero.  Hashi's and Graves' both "run in families", however, a term used when they think it's hereditary but it hasn't been proven.  So, it's something to keep an eye open for .

  

[Red_Star]

"Testing for these anti-TPO antibodies has become the gold standard for detecting Hashimoto's disease. More than 80 percent of people with Hashimoto's will test positive for anti TPO antibodies. Some doctors will test for anti-TPO antibodies even if other tests appear normal. If your anti-TPO antibodies are elevated, your hypothyroidism is probably caused by Hashimoto's Thyroiditis." >>> http://www.netplaces.com/thyroid-disease/hypothyroidism/blood-tests.htm

Excerpt from the book - Why do i still have thyroid symptoms? when my lab tests are normal by Dr Kharrazian >>> http://www.thyroidbook.com/

"Hashimoto's Disease and "Normal" Lab Results

Jan - TSH 4.5
Feb - TSH 0.08
Mar - TSH 2.3
April - TSH 3.8
May - TSH 8.7
June - TSH 7.4
July - TSH 1.6

One reason hypothyroidism goes misdiagnosed is because a person with Hashimoto's can present with normal TSH. This graph illustrates the monthy TSH levels of a person with Hashimoto's who is receiving no treatment. As the autoimmune condition fluctuates, TSH levels vary wildly. Using standard lab range of 0.45 - 4.5 this person would fail to be diagnosed. During the month of March the patient's TSH even falls within functional range 1.8 - 3.0. That's why also testing for immune antibodies and evaluating symptoms and history are so vital."  

Treatment options: T4 medication (eg: Synthyroid, Levothyroxine) - many people to not respond well to T4 alone.  Thyroxine does normalise blood tests, but it cannot relieve low thyroid symptoms until is has been converted it to T3, the active hormone.  Failure to make this conversion is common due to many factors from vitamin deficiencies to stress;  T3 (eg: cytomel) treatment; a combination of T4 and T3 medication; natural desiccated thyroid hormone (eg: Armour, Naturoid) - contains T4, T3, T2, T1 and calcitonin. This is a bit of trial and error on what works well for you.

"New research has shown that Hashimoto's patients with high thyroid antibodies report more symptoms than patients with low thyroid antibodies, even if their thyroid function test is normal. In other words, thyroid replacement is not enough to ameliorate symptoms of autoimmune thyroid disease."

Lowering antibodies: 200mcg of selenium daily lowers TPOAb levels but does not seem to have any effect of TgAb levels.  Keeping vitamin D levels above 125nmol/l (50ng/ml) and a gluten free diet is also shown to lower thyroid antibody levels.  Vitamin D deficiency is common in 98% of patients suffering with autoimmune thyroid disease due to defects in the receptor site for vitamin D. Typically, autoimmune patients need levels at 80 - 100ng/ml (200 - 250 nmol/L).  

Optimal Lab Values–how to interpret your results >>>
http://www.*************************/lab-values/

Thyroid disease >>>
http://www.sensible-alternative.com.au/metabolic-hormones/thyroid-article

Selenium for Hashimoto's Thyroiditis >>>
http://jdach1.typepad.com/natural_thyroid/2011/02/selenium-for-hashimotos-thyroiditis-by-jeffrey-dach-md.html

Autoimmunity and hypothyroidism >>>
http://www.ncbi.nlm.nih.gov/pubmed/3066320

The Celiac/Autoimmune Thyroid Connection >>>
http://thyroid.about.com/cs/latestresearch/a/celiac.htm

Vitamin D deficiency in Hashimoto's Thyroiditis >>>
http://www.youtube.com/watch?v=KX08cfVpRPM

What affects conversion from T4 to T3 >>>
http://www.aerobices.com/458.html

[tangerinelz3]

My pregnancy went great, very uneventful. Hospitalized once for dehydration (it was in July in Georgia). Didn't have any problems getting pregnant and no miscarriages. I am being treated with Synthroid. I am on a very low dose due to sensitivity.
I think if you find a doctor you like and trust and get the treatment you need you have a better shot at the whole pregnancy thing. I have a friend who is also hypo and has had two kids. If you are treated correctly to begin with it will probably make all the difference postpartum.
I understand being afraid to try again, I am terrified too!

[caetlin_h]

Hi Tangerine!  So out of curiosity, how did your pregnancy go?  Did you have any issues before with fertility or miscarriages?  Are you on medication now?  Looking back, there's no doubt in my mind that my postpartum was so rough due to this illness.  It makes me a little nervous about the next go around.

[tangerinelz3]

I just want to add that you aren't alone. I too am postpartum (almost a year) and recently diagnosed Hashimoto's. Hyper phase first that lasted about 2 months, now hypo. I also bled ALOT and have monster periods now. I haven't really felt back to normal yet. There are some great people on this site who have helped me more than my doctors have. You are in the right place. Hope you find some relief soon.

[caetlin_h]

No that's great -thank you!

One more thought, about lab work.  When you're not having a flare, will the blood work read normal?  I ask because I'm nearing the end of a flare, and really want a diagnoses soon.  I guess I'm just hoping that I'm not too late to find something that may or may not be there.

As far as pregnancy goes, I find it interesting because I just had my first baby 10 months ago.. I had no diagnoses at that point, and frankly no idea what was up -just that it was something.  I had a fairly uneventful pregnancy -although third trimester brought on serious chest pain that was definitely not heart burn, but otherwise my daughter was born perfectly healthy and full term.  It did however take us 2 yrs to conceive.  So now I'm paranoid that because I wasn't medicated during pregnancy that she'll end up with the same problem. OR, I'm paranoid to try and conceive again without getting on meds -which we're technically trying to do now.  Think we should wait?

Now that I think about it though, my rehab post partum was looong and intense.  I bled for two straight months, and passed out several times in the first few days.  It took me well over three months to get any sort of normal energy back, and I wonder now if this thyroid business had anything to do with that.

Anyway, hindsight is 20/20.  Thanks again for all the good info -I have an apt. with my worthless GP on Monday, and I'll insist on the FT3 and TSI test.  I'll keep you posted!

[goolarra]

Yes, you do have it backwards.  TSH is counterintuitive...when it's low, your thyroid function is too high (hypER), and when it's high, your thyroid function is low (hypO).

If TSI is positive, you have Graves'.  If it's negative, you have Hashi's (possibly with toxicosis).  It's possible to have both, but it is rare.

I'll try to explain medicating more clearly.  Especially in the early stages of Hashi's, people often swing from hypo to hyper, i.e. their FT3 and FT4 levels go down very low, then swing up very high.  This goes back and forth.  So, say, your FT3 and FT4 levels are high (TSH will be low).  Your doctor puts you on ATMs to lower your FT3 and FT4 levels.  All of a sudden, your thyroid decides to switch, and it starts putting out very little hormone instead of too much.  You now have the combined effect of your thyroid putting out very little and the ATMs causing it to put out even less, so the swing can be quite dramatic and quite fast.  The same thing can happen in the other direction.

That's exactly what I'm saying about antibodies...either you have 'em or you don't.  It doesn't matter how high they are.  People with no thyroid problems can still have antibodies, but that's because it can take years or decades for antibodies to cause symptoms.  If they live long enough, the antibodies will eventually cause thyroid dysfunction.  So, you could have antibodies for, say, 5 years (just an example) before they do enough damage to cause symptoms and/or for FT3 and FT4 levels to go out of range.

Wow, that last question about fertility and pregnancy is a loaded one!  I might have to write a book!  Pregnancy and childbirth can wreak havoc with even the healthiest of thyroids.  Improper thyroid levels can cause miscarriage and impair fetal development.  So, it's of utmost importance to have your thyroid condition under control before conceiving.  It's by no means a lost cause, many women with properly controlled thyroid conditions have normal pregnancies and healthy babies all the time...you just have to be carefully monitored during pregnancy so that the changing demands on your body are met with meds.  I wasn't trying to make light of your question with my first two sentences...it's a huge topic and could fill a book.  As with anything else, you want to be in the best health you can be so that your baby gets a good start.

I think that if I were you, I'd try to get the TSI done locally to rule out Graves'.  Once that's ruled out, do some interviewing over the phone to try to find a doctor with experience with treating toxicosis.

I hope that helped and didn't just further confuse.....  

[caetlin_h]

I admit that I'm confused, but I'm very anxious to understand.  I had assumed this whole time that if your TSH is low, then you're hyPO (being not enough) and if your TSH is high, then  your hyPER (being too much)  Do I have this backwards?

I'm wondering about toxicosis now as well.  Every Flare is different. the flares two years ago came with chronic hives and heart races and night sweats, now my current one comes with extreme fatigue and exhaustion.  It feels to me like I'm going from one spectrum to the next. I admit that what you said about medicating this type of problem is VERY confusing, and I guess i need to find a good endo -which is very hard to do in Vermont -we're kind of in the middle of nowhere. Perhaps I should try getting an apt at Dartmouth.  So if I have a positive TSI then I am definately Graves? And if I have a negative one then I am definitely Hashi's with toxicosis?

As far as the antibody's go, are you saying that the numbers don't really matter, that it's simply the presence of antibody's that makes the difference?  Someone with no thyroid problems with have no antibody's?  

What are the implications of medication versus non-medication on fertility and pregnancy?

thanks!

[goolarra]

Most, if not all, of us on this board have come to recognize the significance of FT3.   However, there are doctors out there who were taught in med school that "if FT4 is fine, FT3 is fine, too".  That's simply not true, but just try to disabuse some of them of that idea.  Just make sure to specify FREE and to verify that's what they're doing with the tech who draws your blood.  If they just order "T3", you will get total T3, and that's not what you want.

Unlike your previous labs, your current labs look hypER.  Your FT4 is quite high in the range, and TT3 (for what it's worth) is not "normal", but above range.  TSH is very low, also indicating hypER.  The first three labs seem to have been during a hypo or low normal phase, while the latest during a hyper or high normal phase (read on).

Assuming you don't have Graves' (but testing TSI will put the matter to rest, so it's worth doing), then it looks like your current labs were done in a period of Hashitoxicosis.  Some people with Hashi's swing from hypo to normal to hyper.  The hyper phase is considered "toxicosis".  Yes, usually levels look quite different when you are in toxicosis, and you feel quite different as well...intolerance to heat, weight loss, diarrhea, insomnia, racing heart, high BP, tremors to name a few of the symptoms.  Any difference in symptoms during this "flare" as opposed to the others?  

Actual numbers, as far as antibodies are concerned, are not of any particular significance...basically the test is positive or negative.  Antibody counts can vary wildly intraday, and once you have the antibodies, you have them for life.  So, continued testing is really unnecessary.

Hashi's with toxicosis can be difficult to treat, so you might want to seek out a doctor who has experience with it and who you are more confident with.  Considering your current labs, I would assume that they would want to put you on anti-thyroid meds (ATMs) to get your FT3 and FT4 down and your TSH up.  You can see how this might get tricky, because once on ATMs, when your thyroid swings back to hypo, you can become very hypo very quickly from the combined effect of what your thyroid is doing and the ATMs.  And, of course, if you become hypo and they start treating you with thyroid hormone replacement drugs, and you swing back to hyper, the combined effect once again will make you hyper very quickly.

One very important point...decisions on meds should be made based on FT3, FT4 and TSH (in order of importance) minimum.  TSH alone should never be used as the basis, but many doctors think TSH is the "gold standard" of testing.  Those are the kind of doctors you want to stay away from.

"I'm very confused as to how TSH and antibodies can be abnormal and T3 and T4 can be normal. hmmmm."  It happens all the time.  It's partly because TSH can be very volatile and can be affected by any number of factors other than thyroid hormone levels.  Also, it can take antibodies years, or even decades, to destroy enough of your thyroid function to cause FT3 and FT4 levels to go out of range and/or cause symptoms.  Add to that that we are all unique.  I am very comfortasble very low in the ranges and become hyper way before my FT3 and FT4 go above range.  Some of us are just the opposite and are extremely hypo if our frees aren't close to the top.

I think I'll stop now at the risk of confusing you.  If anything I said is unclear, please feel free to ask for clarification.    

[caetlin_h]

ok, reference ranges for T3total are 60-181 and freeT4 is 0.8-1.8 so they're both normal.  I'm very confused as to how TSH and antibodies can be abnormal and T3 and T4 can be normal. hmmmm.

[caetlin_h]

thank you, that's very helpful.  I've never been tested for T3 free, I wonder why not?!  I did have an ultrasound back in 2009, but it showed nothing, and yes, all of that blood work was done during a flare.  The antibodies continue to get more and more elevated, and coupled with the symptoms I feel like Hashi's makes the most sense...but I will definitely insist on the test for definitive Graves and the others you mentioned.  Do you know, will your levels look differently when you're not in a flare up?

As far as the meds go, I'm very confused about what the proper way is to handle my situation, and I'm not confident in my doctor at all.  I feel like I need something, considering how poorly I feel during a flare up, and my levels are really concerning to me.  but yes, the only reason they've decided to try meds is because of the TSH -when I brought up the possibility of Hashi's two years ago, they all blew me off.

thanks again
caetlin

[goolarra]

Both TPOab and TGab are elevated, indicating autoimmune thyroid disease, either Hashi's (hypo) or Graves' (hyper).  Unfortunately, your T3 test is a total T3, which is not nearly as useful as a FREE T3.  

Please provide reference ranges for TT3 and FT4.  Ranges vary lab to lab so have to come from your own lab report.

I think the first thing I'd do is have TSI tested (thyroid stimulating immunoglobulin).  TSI is the definitive test for Graves'.  At the same time, repeat FT4 and TSH and request the FREE T3 this time..  Have you had a thyroid ultrasound?  August, 2011 labs were during a "flare"?  What about the other three sets of labs?

Are you sure your doctor will want to put you on meds?  Is that based on TSH only?