I Think I Might Have Hashimoto's - What Test Should I Ask For?

[HavaneseMom]

Hi Everyone,

 

I haven't been on the forum in a while and have been moving right along with recovering from most of my symptoms since I was diagnosed in October 2013. I am still experiencing fatigue and am very sluggish, and have some other lingering issues, so I started to do some research and discovered the strong connection between Hashimoto's and Celiac. I was curious, so I looked it up on WebMD and Mayo's site and was surprised to see that I have every single symptom that they list for Hashimoto's.

 

I would like to schedule an appointment with my GP to be tested and am wondering if there are any specific test that I should ask him to run? I think my thyroid numbers looked alright when they last ran my basic blood work a year or so ago, but I don't know if those numbers would have indicated Hashimoto's. I remember when I was spending a lot of time reading on this forum a while back, that people had mentioned that thyroid issues can be overlooked when only the basic blood work test are ran. I really want to be prepared for my appointment and make sure that my doctor runs the proper test to diagnose Hashimoto's, since he isn't a specialist and I'm not sure how often he comes across it. I am also wondering if I need to see a specialist for a Hashimoto's diagnosis, or is this something a GP can handle?

 

Thanks in advance!

[nvsmom]

There's a fair number of us around here with Hashi's.  You're smart to look into it.

 

Thyroid testing can be tricky because subclinical hypothyroidism will often have "normal" lab results.  From what I've read, people who have thyroid problems need to have numbers within a certain range in the normal reference range - that reference range is often too wide for us.

 

These are the tests I would ask for:

• TSH - Should be near a 1 (like a 0.7 or 1.3) regardless of the normal reference range.  A TSH of 2 or 3 can be too high for some people.  If you have a TSH like that, and have symptoms of hypothyroidism, then you are probably one of those people.
• Free T4 and Free T3 - Should be in the 50-75% range of your lab's normal reference range.  Pay extra attention to the FT3 because that is the active hormone in the body.  My FT3 was in the bottom 10% of normal when my TSH was high; it was technically "normal" but I felt poorly.  Once I got it above the middle I felt quite an improvement.  Do not get the total T4, total T3, T4 or T3 because they won't give you as good of an idea of what is going on.  Make sure "free" is in the name.
• TPO Ab - Will tell you if you have auto-antibodies attacking your thyroid.  It can get quite high or be within normal. My TPO Ab has never been abnormal but my thyroid barely works.

The reverse T3 can help too but most people don't test for this unless there is a problem with TSH, FT3, FT4, or TPO Ab.

 

In Alberta, GP's handle thyroid problems unless it is Graves.

 

Good luck!

[cahill]

I am in the US Any doctor can order the test ,,, but chances are a GP is not going to ,nor will they know the correct test to order.

 

TG AB  & TPO AB  are the testing for thyroid autoantibodies that my endocrinologist  did when she diagnosed my hashmotos . Mine were so high it made my ANA come back with a moderate positive .

[Gemini]

Dr. Nicole beat me to the punch and her advice was excellent.  Tell the doctor that they MUST run a FULL thyroid panel because anything less is negligence....don't take no for an answer.  It only takes your thyroid being off by a small amount for you to feel sluggish and running in slow motion.  Running the whole panel will give a clear picture of what is going on.

 

Good luck!

[icelandgirl]

Ditto on what Dr. Nicole said. She knows more about the thyroid than anyone...for real!

Most Dr's will test just TSH or TSH plus free T4. Neither of those will indicate Hashimotos and also won't tell the full story of how your thyroid is doing. You need free T3 for that. Bring the list of tests to your Dr.

Best wishes and let us know how it goes. I always post my results for Nicole and Gemini to evaluate. Lol!

[HavaneseMom]

Thank you everyone!!!

I will definitely make a list of the test you mentioned and bring it with me to my appointment. I am going to print off the symptom list from WebMD and Mayo to bring with me too so he can see that I have all of the typical symptoms.

I'm a little nervous about asking him to run the test, since my last doctor would get very upset anytime I suggested I might know what was wrong with me. I think I have mentioned before that I had asked him to test me for Celiac a few times in the years leading up to my diagnosis and he would get upset and insist that I don't have it. Well, I did, and I stopped seeing that doctor after seeing him for 15 years the day I was diagnosed by the GI specialist. I am generally an assertive person when I need to be, but that whole experience has made it very hard for me to communicate with doctors. I always have to make a detailed list to bring to appointments and read from because I shut down and can't remember a thing.

My new doctor seems more open to suggestion, so I just have to work up the courage to insist he run these test. I will definitely get a copy of the results and come back to let you know what they say.

Thanks so much!

[nvsmom]

I hear you on that.  I diagnosed every single health problem I have had since my 20's.  I just went to the doctor for confirmation.  LOL  I too had one doctor who didn't appreciate my demands (when it came to trying other drugs).  He actually told me that I need to read less.  Apparently ignorance is good for my health.  

 

I don't really know all that much on thyroid stuff.  I just read a bunch of books and studies when my hypo thyroid treatment wasn't working for me in the first 9 months or so.  Plus I'm a statistics junkie. 

[icelandgirl]

I hear you on that.  I diagnosed every single health problem I have had since my 20's.  I just went to the doctor for confirmation.  LOL  I too had one doctor who didn't appreciate my demands (when it came to trying other drugs).  He actually told me that I need to read less.  Apparently ignorance is good for my health.  

 

I don't really know all that much on thyroid stuff.  I just read a bunch of books and studies when my hypo thyroid treatment wasn't working for me in the first 9 months or so.  Plus I'm a statistics junkie. 

You know more than most Dr's. Lol

My Dr told me that same thing...that I needed to read less. I walked out of his office, sat in my car and cried and switched Dr's.

[Gemini]

Honestly.....we must have gotten the same doctors out of the same bad medical school, Ladies!  Pretty sad that men who are so well educated would fear a female asking too many questions about their own health. 

 

Like Nicole, I diagnosed every single one of my AI diseases and then when I read up on how to actually test for them, I went to the doctor and made my demands .....nicely, which was more than they deserved.  I remember pissing doctors off so bad in the old days, that a few of them walked out of the room and never came back.  All I said was that I wasn't interested in meds but wanted to find out why my stomach hurt so bad after eating.  You know, find the actual root cause?  I said this as they were writing out a script for acid suppressors after listening to me for a whole 10 minutes. Why that instills so much anger in some is beyond me and it distresses me to hear that this is still being done today.  I put up with this BS over 25 years ago!

[nvsmom]

Gemini, you're a stronger person than I.  For the first 30 years of my life, if a doctor said there was no problem, or that was just the way it was for me, I accepted it completely.  In my 30's I stopped going to doctors unless I needed antibiotics.  I even used a midwife at home so I could avoid doctors for childbirth.  LOL  In hindsight, I wish I had skipped that stage and just started asserting myself.  Maybe by time I'm a senior citizen I'll be able to stand up for myself without stammering or turning red.  

[HavaneseMom]

Wow! I'm surprised to see so many doctors have graduated from The Bad Doctor School.

While it's comforting to know you all understand what I went through, it is very unfortunate that it is so common and has caused needless suffering. I'm going give that doctor heck until he agrees to run these test! Doctors are service professionals who should be working for us after all. It's just so hard for me to remember that when they walk through that door.

[nvsmom]

It sounds like you'll be walking through the door well prepared this time.  

[Gemini]

Gemini, you're a stronger person than I.  For the first 30 years of my life, if a doctor said there was no problem, or that was just the way it was for me, I accepted it completely.  In my 30's I stopped going to doctors unless I needed antibiotics.  I even used a midwife at home so I could avoid doctors for childbirth.  LOL  In hindsight, I wish I had skipped that stage and just started asserting myself.  Maybe by time I'm a senior citizen I'll be able to stand up for myself without stammering or turning red.  

OMG......the comment about the midwife made me chuckle because I would have done the same thing. If I had ever had kids, it would have been at home with a woman of knowledge! And I probably would not have gone running off to the docs through-out the pregnancy, either!

I was not stronger, just sick of coming home from work and crawling into bed, sick. I slept a lot. That was no life. The more docs I went to, the angrier I got at the lack of help and respect. I was thin but did not look officially sick. The basic testing they did back then came back GREAT....except for the anemia, which they blamed on everything else they do with women. So they did not take me seriously and thought it was all in my head. Celiac was not even on anyone's radar 25 years ago. When the last GI I saw started down the "go talk to a shrink" street, I never went to another doc for 8 years....for anything. That was one visit and then another hiatus from doc's for another 8 years...no kidding. I was still having many problems but there was no doctor stress. Ha, Ha!

I have a PCP I like now but am still kind of wary around any of them. The trust is not there completely but like you, maybe by the time I am a senior, I'll get used to them. Good thing I figured it all out and then went and had testing. All testing for everything I asked for came out very positive so in a way, I think she realizes I know what I am doing....at least with AI stuff. I go to a new practice with all MD's but they go the functional medicine route, on top of traditional medicine, when needed. They are a lot more laid back and open to conversation. I have never been brushed off there so maybe I have found the place for me. If I had to go to anyone that gives you 15 minutes to explain your problem, I would revert back to a doctor visit per decade. It just should not be this hard for anyone!

[Gemini]

Wow! I'm surprised to see so many doctors have graduated from The Bad Doctor School.

While it's comforting to know you all understand what I went through, it is very unfortunate that it is so common and has caused needless suffering. I'm going give that doctor heck until he agrees to run these test! Doctors are service professionals who should be working for us after all. It's just so hard for me to remember that when they walk through that door.

Go get 'em, Tiger! Look them straight in the eye, tell them what you need and ask them to make it happen........with a smile on your face! Let us know what happens!

[HavaneseMom]

Hi Everyone!

I was able to get an appointment with my doctor right away and saw him this afternoon. Well, I pretty much caved in and went along with what he wanted to do. I didn't even realized it had happened until I got in my car and was driving away.

At first he said he would run all of those test, then as we were taking he said that my insurance wouldn't cover them all at this time because he hadn't run the preliminary test first, which are TSH and Free T4. He wanted to run those two first to see if the came back out of range before running the more detailed test.

It made sense at the time, but now I am wondering if those two test are enough to indicate Hashimoto's or another thyroid issue, so that the more detailed test could be ordered if need be? He did pull up my last TSH results, which were 2.5 and said that looked ok, but he likes to see it around 1. That left me wondering if 2.5 is really ok, since it's not 1? I'm a little confused right so any input would be super helpful.

I did have my blood drawn after my appointment and should have the TSH and Free T4 results in a few days. The doc said he has a feeling they will come back fine, but that it would be good for me to know for sure...

Thanks in advance!

[icelandgirl]

Oh I'm sorry... ((hugs)). I've had a Dr talk me out of testing before and then regretted it as soon as I walked out.

Anyway...those tests will not tell you if you have Hashimotos, you need the antibody tests for that. You can even have those come back completely normal and still have Hashimotos. That happened to my mom. She finally insisted on the antibody testing and it came back at 1600...which is pretty high.

Is it possible to call your Dr's office and talk to the nurse to see if they could add to the testing before it gets sent to the lab? At least the free T3...that's the active thyroid hormone and tells a lot more about what's going on with your body than the other two. My free T3 is really low...below the normal range and I feel bad...my other numbers are fine. Because of the Hashimotos, my body doesn't convert from T4 to T3 efficiently so no matter how much levothyroxine they were giving me it didn't help. I'm now on a small amount of T3 medication in addition and I can tell a difference.

I've gone on too long. The tests he ordered will only tell part of the picture of your thyroid health. I'm sorry that the appointment didn't go as well as you had hoped. Been there...done that.

[Gemini]

If your insurance requires that the TSH and free T4 need testing before they can do the rest of the panel, then go with that for now and see what the results are.  If they come back OK, then insist that your doc run the rest of the panel and reiterate that you are having major hypothyroidism symptoms.  I never understand how an insurance company refuses to do a whole thyroid panel when one test may be off, and that one test may be the one you didn't do. 

 

The TSH is generally considered high when it goes over 2.5 and it can mean you are hypothyroid.  However, everyone is different and has their own level within that range where they feel good.  Maintaining it around 1 is optimal but having a higher number does not mean you have a problem.

[cyclinglady]

Did he even touch your neck? My doc caught my thyroid enlargement and nodules and ordered the complete panel. But that was 20 years ago, when insurance paid without question.

[HavaneseMom]

Thank so much for the replies!

Icelandgirl - That's a great idea to call them to see if they can add to the testing, but the lab closed at 4pm and it's almost 6pm here now. They move things through pretty fast, so I think it's too late for that now. I'm bummed that I gave in like that. It happened so fast that I wasn't even aware of it at the time. Thanks for sharing you experience and your mom's too. It's very helpful info and I alway like to learn from others experiences. I'm glad you are seeing improvement with your new meds. That is great news!

Gemini - Thanks for explaining the numbers to me. I will be back to let you guys know the results and see what you think of them. I am definitely more assertive over the phone, so I shouldn't have a problem calling and insisting on the additional test once the initial test results are in. I don't understand the insurance companies at all, but I told my husband what happened today and he said I should have just told the doc to order the test and I would pay for it out of pocket if need be. Ugh! I didn't even think about that option. Not that I want to pay out of pocket, but I would be willing to do it if I had too in order to make my body feel better. My digestive system has improved so much and I am beyond thankful for that, but my body feels so tired, sore and achey most days. I'm ready to see improvement in that area now and just looking for a possible answer.

[cyclinglady]

Gee, you already have one AI disorder. Think they would be more helpful in identifying another! But it is ALL about the money!

[HavaneseMom]

Did he even touch your neck? My doc caught my thyroid enlargement and nodules and ordered the complete panel. But that was 20 years ago, when insurance paid without question.

Hi cyclinglady,

He did put his fingers over the area of my thyroid and had me swallow twice. It just took a few seconds for him to do that and he said it felt fine. Is that the same type of thing your doctor did when he examined your neck?

[HavaneseMom]

Gee, you already have one AI disorder. Think they would be more helpful in identifying another! But it is ALL about the money!

Yes! That would be nice if they were more helpful. He did admit to me a few times that he doesn't know a whole lot about Celiac and a couple of things he said led me to believe this is very true.

[icelandgirl]

Yes! That would be nice if they were more helpful. He did admit to me a few times that he doesn't know a whole lot about Celiac and a couple of things he said led me to believe this is very true.

The Dr that told me I should stop reading so much had no clue that having one AI increases your chances of getting another. He also had no idea about the connection between celiac and Hashis. He refused to fest me for Hashis. That was the day I quit.

[cyclinglady]

Hi cyclinglady,

He did put his fingers over the area of my thyroid and had me swallow twice. It just took a few seconds for him to do that and he said it felt fine. Is that the same type of thing your doctor did when he examined your neck?

Yes, but both my GP and my GYN found an enlarged thyroid and some nodules.

[HavaneseMom]

Hi Everyone, I'm back with my test results already! I was very surprised to get a call so soon with the results.

My TSH came back at 1.98 and my Free T4 at 0.82 . She said both of those numbers looked good. I didn't ask for the detailed Thyroid test when I was talking to her, because I wanted to check with my gastro doctor for the results of the follow-up test I had drawn yesterday that he had requested first. I wanted to check back and see what you all thought about those numbers too.

Well, the test my gastro doctor had requested didn't come back so great. My Ferritin is back down to 10 (the highest it has been since my diagnosis was 12) and my Vitamin D is back down to 18 (21 is the highest it has been since diagnosis). I honestly haven't been supplementing like I apparently should be, mostly because my stomach feels so much better when I don't take supplements. I also thought since I was this far along, being diagnosed almost 17 months ago, that I would be able to absorb nutrients now and bring my numbers up naturally. I can't believe I caused my own set back by not supplementing!!!

My doc said both my Ferritin and Vitamin D need to be in the 50-60 range before my fatigue, sluggishness, pain, muscle aches, etc. will subside. Now I'm wondering if I am barking up the wrong tree by looking in to Hashi's, when most of my symptoms could be caused by my low Ferritin and Vitamin D levels. The symptoms for Hashi's vs. low Ferritin with Vitamin D deficiency seem to be very similar.

Thanks for letting me go on about this

I look forward to hearing your thoughts.