Thyroid tests are normal?? Are you sure?

[nonstickpam107]

Heather that shaky, and quivering in the thigh muscles, heart over 160bpm, etc., ..yep, that's where I started...but...you need both TPO AND TSI (Graves autoimmune) run and you need to see a doc right AWAY. Are you doing anything different lately...eating hardly no carbs/cals, eating soy, etc.?? A TSH test doesn't mean much of anything. Did you SEE the endo?

My doc did a 'block and replace' on me. He gave me beta blockers for the heart (slow it down) AND a little bit of thyroid hormone at the same time. He said he's one of only about 20 doctors across the US who do that method, btw.

You may very well have autoimmune Graves (hyperthyroid) disease, but it takes testing to tell, and Graves or hyper can be really dangerous..you need to see a doctor NOW..but don't let them talk you into an ablation (they kill off the thyroid with radioactive iodine) BEFORE you get all the tests! Many docs don't do both antibodies and will call just a low TSH 'hyperthyroid'. BTW..my TSH started at .012 and now is kept at below .30. Just to show you TSH doesn't mean much without the other tests.

You need to get those tests right away and see a doctor for the heart rate right away.

ETA: if you can say what state you are in...or close to...I can maybe shoot you a list of good thyroid doctors.

Pam

[holladay]

Hi Pam,

No, i did not see the endo....I waited for two hours while he talked to pharmaceutical reps and I decided that this was not the place for me. Actually my heart rate has not been that high in the past few days, i have worn a heart monitor for 24 hours that my PCP ordered.

I am in TN, between Memphis and Nashville. I have not been changing my eating habits, because I wasn't exactly sure how to do that, without knowing exactly what I have.

My PCP is trying to get me in to another endo this morning I told her ASAP because I'm not feeling very good this morning.

Thanks for your help

[nonstickpam107]

Let's see what I can find for you....many of us drive up to two hours one way for great thyroid care....and you may not want an 'endo' either...endo's do great diabetes...not always great thyroid care though.

ETA: Ok, your state is one of the ones where there aren't very many GREAT thyroid docs...most of the patient recommended ones have that 'Oh, ooh...ahhh..HE listened to me!@!! YAY...' and then when I contact the patient and ask "Did he give you Armour thyroid and do the correct tests?" I'm told "OH, no...said I was 'normal'..but he LISTENED to me!!!"

I want a doc that treats me, I can get the dogs to listen to me half the time, and my DH the rest, sigh. So, here are the TWO in your area that are supposed to be great...and the first one comes HIGHLY recommended, if it's the one you waited for...I"m a tellin' ya....if I had to wait four hours for my thyroid doc, I wouldn't have minded at ALL:

Dr. Kevin Merigian, Wellness Arts, Old Dexter Road, TN 38016, 901-757-4646, The Stone Institute.

Dr. Elaine Bunick, Endocrinology, 200 New York Ave, Suite 340, Oak Ridge, TN, 865-483-5639

I want you also to go to ArmourThyroid and use the docfinder there...uses zipcodes, so put in zips up to an hour and a half driving time away. If you settle for just the endo's and docs 'in your area' than you might be missing a really good one. Also, do a search (google) for 'Anti aging clinics and doctors in _______ and see what pops up...read if they do thyroid care.

Pam

[holladay]

Hi Pam,

I tried calling the Stone Institute and the earliest they could see me was July. I cannot wait that long, and I am waiting for my doctor to call me back.

I have called several places within 2 hours drive and cannot get anything sooner than July. The other doctor you listed is a 5-6 hour drive, and I just can't do that right now.

Thanks for your suggestions, I appreciate you taking time to help.

[nonstickpam107]

Than have your doctor call the Stone Institute and see what they say about getting you on cancellation lists (if someone cancels) or sometimes a doc can get you in, in the meantime DO call your reg. physician and have the TSH, FT4, FT3, TPO antibodies done (if he/she won't, go through Online Lab Tests: blood work, blood testing and laboratory tests). Just because you can't get right in doesn't mean you can't get treatment started. Your own PCP can do those tests and give you beta blocker for the heart rate if needed. My PCP at the time started my therapy as I waited to get into my doctor.

Also, you need to know that going too low in carbs/calories can trigger thyroid disease and produce that type of heartbeat...and so can eating a lot of soy.

Pam

[Tea Cozy]

Question for you gurus: I am going to have my 3 month thyroid labs drawn to see how the medication is working. What should I do with regard to eating, medicating, etc, the day of the test?

Thanks!

[nonstickpam107]

Tea cozy, kind of up to your doctor's plan. And what med you're on. If you are on Armour, my doc wants you to take your split (1/2 your daily dosage) four hours before your test (EXACTLY 4 HOURS, lol). If you are taking T4 synthetic only..doesn't matter WHEN you test, cuz it has a half life of about 4 WEEKS (so it doesn't really 'catch up' for that long...it won't test what you just took). If you are on T4 AND Cytomel, most would want you to take like...5mg. Cytomel (cuz most docs dose it in 5 mg. increments four hours apart) 4 hours before test.

We ARE talking doing FT4, FT3 here...since T3 has a half life of four hours (and the normal human thyroid converts at the rate of about 6mg. per every four hours throughout the day) and most thyroid's make about 22 to 24mg of T3 throughout the 16 hour 'awake' hours (that's shocking when you think about docs ONLY giving 5 to 10mg. for the entire DAY, isn't it??).

Ask YOUR doc what he/she wants...but this is usually how most test. SOME do test 'naked' though..no meds morning of test..and that will work with just taking synthetic T4 cuz it's not active for weeks.

Pam

[olsufka2]

OK, i posted a few days ago with my lab results ~ long story short ~ my FT4 came back minimally low 0.71 and my TSH was on the low side also but within the normal range.
I just got back from my PCP. Talk about being out there in left field. I told him my FT4 was low and that I wanted a FT4, FT3 and an antibody test done and he said "Woe, Woe.... there is no need to do any of that if your TSH is normal. That is the only real test used to see how the thyroid is functioning. The FT4 doesn't even matter is the TSH is normal. So, refused to do a FT3 or antibody test but was stupid enough to repeat the same test
my neuro. had just done just to see.
Results Free T4 0.80 normal range is (.78 - 2.19)
TSH 0.797 normal range is (.465 - 4.68)

From what i am reading they are both still in the low range.
He sent me on my way and told me to come back in a year to have it rechecked. I even told him that my FT4 numbers are as follows 1.06 down to .82 down to .71 ~ It just keeps dropping but he says it's fine since my TSH is within normal range. MY GAWD!!!!!!! No wonder sooooo many people go undiagnosed until they 're half dead.

Pam, what do you think of this? How in the world do you convince someone to run an antibody test???????

I AM SOOOO FRUSTRATED!!!!!!!!!!!!!

HELP!!!!!!!!!!!!!!!!

[nonstickpam107]

I don't know why you are frustrated. You can get TSH, FT4, FT3 and TPO antibodies at: Online Lab Tests: blood work, blood testing and laboratory tests You order from there, they send you to a lab near you, and report the labs back to you. Use check out code: 12345 upon checkout and you'll get a discount.

Now, lets go down the 'list' of things that mimic hypothyroidism, OR cause a low FT4, FT3

1. Going too low in carbs and calories...under 30net grams carb/under 1200 cals
2. low iron
3. low progesterone, estradiol (perimeno/menopause)
4. EATING SOY

So, if you are anemic, or low iron, that can cause problems, and mimic hypo, people who do too strict a diet will also cause thyroid damage/trigger hypothyroidism. But you don't have to beg a doctor for tests. And there are good thyroid docs to treat...in most places in the US.

Pam

[holladay]

Hi Pam,

I do have an appointment at St. John's Hospital with an endocrinologist on Monday. It was the only place I could get in before July, so I'm going to give them a shot.

I did have a thyroid ultrasound which did not show any nodules, and I am taking a copy of that to the endo. I'm going to ask for the tests you recommend and take it from there.

Thanks for you help. BTW I don't have a problem with not enough calories or carbs, if anything i probably eat too many, and I don't eat anything with soy.

[nonstickpam107]

holladay, that's great you eat no soy though! It's hard to give up sometimes. I wish you the best of luck! Let me know how you are doing please.

Pam

[landis]

Maybe I missed this but you said extreme LC or low calories can LEAD to hypothyroid right? Would this be temporary and go back to normal after you resume eating normally again? I am asking this because I did a three week fairly extreme LC and low calorie diet. That is when all of my symptoms became really bad. I have been back to normal eating for about two weeks I guess but am still not feeling better.

[nonstickpam107]

No, I'm talking about extreme low cals/carbs for like a year or more...like those who are anorexic or bulemic. Many of us did the VLCD all through our teen years...and that can really lead to hypothyroidism. Once you damage your thyroid (also, many who've had mono--EBV virus end up with hypothyroidism), it doesn't work properly.

Pam

[landis]

Originally Posted by nonstickpam107

No, I'm talking about extreme low cals/carbs for like a year or more...like those who are anorexic or bulemic. Many of us did the VLCD all through our teen years...and that can really lead to hypothyroidism. Once you damage your thyroid (also, many who've had mono--EBV virus end up with hypothyroidism), it doesn't work properly.

Pam

Okay I see. Thanks! Sent you a PM about a doctor in Oak Ridge, Tennessee I was wondering about. Brentwood is at least 3 hours away It's close to Nashville. I'm in Knoxville by the way. Oak Ridge is just outside Knoxville.

[nonstickpam107]

Fort Wayne, IN is over two hours from me, yet I travel that far. (There are 15 docs close to me...all who would look at my TSH call me normal and send me home to die, sigh).

Pam

[landis]

Originally Posted by nonstickpam107

Fort Wayne, IN is over two hours from me, yet I travel that far. (There are 15 docs close to me...all who would look at my TSH call me normal and send me home to die, sigh).

Pam

[odalin]

My name is Carolina and I an new to this thread. I have Hashimotos and have been on medication for 5 years. On my last visit to my endocrinologist I was very disappointed. I have not been feeling well. Problems sleeping, mood swings, depression, very dry skin and awful hot flashes day and night. He performed my labs and this is what came out.
T-4 Free= 1.5 (0.8-1.8 range)
T-4 (Thyroxine) Total=11.0 (4.5-12.5 range)
TSH, 3rd generation= 3.75 (.40-4.50 range)
After he looked at these he basically said that all my problems especially my hot flases had nothing to do with my thyroid. He then went on to get me to take a lot of other tests for other conditions that all came within normal range. Now he wants me to go back in 3 months to get my TSH retested. When I told him my TSH seemed a bit high for me he said that it was very normal. I don't feel normal!!
I am really thinking I need to switch my doctor. I am only 29 so I know my hot flashes can't be realted to anything else. Any good Doctor's in the Atlanta area?
Thank you
Carolina

[nonstickpam107]

Yes, Carolina, there is a good doc in the Atlanta area. I'm gonna PM someone to come in here and tell you who they go to (this doc does T4 AND T3 synthetic, and maybe Armour..if needed). You really need to switch your doctor, I'm hoping you read this thread (I know it's very long) and know that not testing your Free T3 is WRONG and having a TSH much over a 1 isn't right either for a lot of us.

Hang in there...

Pam

[odalin]

Thanks Pam. I really appreciate it.

Carolina

[inatic]

Odalin Pam pm'd me about your struggle. I cant pm you, you dont have enough posts (web rules)

Try Dr Robert Goldman (alpharetta, Ga) or Dr Kunz of Lawrenceville, Ga.

and you might want to consider joining our Ga thyroid bb. Georgia_Thyroid_Groups : Georgia Thyroid Groups

[odalin]

Thank you. I also joined the GA group.

[Beth1121]

Originally Posted by inatic

Odalin Pam pm'd me about your struggle. I cant pm you, you dont have enough posts (web rules)

Try Dr Robert Goldman (alpharetta, Ga) or Dr Kunz of Lawrenceville, Ga.

and you might want to consider joining our Ga thyroid bb. Georgia_Thyroid_Groups : Georgia Thyroid Groups

I'll second Dr. Kunz. I use him. He has recently formed a thyroid research clinic. There is lots of info on the board that Ileen linked.

[Rhonda in Phx]

Hi Pam,

I went to a chiropratic doctor for some blood testing as I am hoping to get to a normal weight and change insurance companies (self employed). Anyway... my blood work came back and I was told that I was severly anemic, needed more protein in my diet and that my thyroid appeared to be fine. I went in primarily due to being tired, hair growth on face and neck/chin area, hair falling out in large amounts and being sluggish and tired. I have absolutely no energy at all. I know that my weight plays into this however, I cant help feeling that there is something else wrong. Additionally she ordered a saliva test for hormones. The saliva test showed that I was estrogen dominate and low in progesterone.

The saliva test was completed 4 months after the initial blood work and when I went in for the hormone results she stated that I was low in progesterone and recomended a cream supliment. When I asked her if progesterone could affect hair loss she said no not usually. She once again looked at my thyroid numbers and stated that maybe it would be a good idea to take some thyroid pills for a month to see if it helped. I probably would have done what she said except that I have seen your name on this board for years and read a little of what you were saying. Somehow I guess I am just not trusting what I was told.

My questions to you is about the thyroid test results and should I be taking these if she "just decided to give this a try"?

TSH - 2.05
T3 - 31.7
T4 - 6.3

Thanks Pam!

[WendyOH]

Please post the ranges for your thyroid levels. 31.7 doesn't look like they did a FREE T3, which is what you want.

[nonstickpam107]

First of all, I need the exact lab ranges used. SEcondly, NO that's NOT a T3 test. That's a T3 Uptake (which is a useless test for binding T4..waste of money there). What thyroid 'pills'? You really need to read this long thread...there are all sorts of different thyroid hormones, and some are synthetic. There are all sorts of doctors, and about 2 out of every 40 are good at thyroid (I can help you find a thyroid doctor, but you need to be more educated about your own thyroid and how it works, and what tests are correct.

You don't give your age. I dont' believe in 'estrogen dominance' sorry. And if you are given progesterone, that's good, but it will further bind your thyroid hormones in the bloodstream..so you need a doctor who's both great with thyroid AND with bioidentical hormones.

Here are some doctors in Arizona that do thyroid well (Armour Thyroid) and one that does thyroid and bioidentical hormones.

Gilberto Leon, Naturopathic Physician, 600 S Dobson Rd #D - 33, Chandler, Arizona 85224, 480-857-3484.
One of the best...believes in Armour Thyroid!

Judith Hunt, MD, General practice/internist/primary care, 708 Couer D'Alene, Payson, AZ, 85541, 928 474 1714.
Hypothyroid herself, treat with both Armour and Cytomel

Ralph J. Luciani, DO, MS, Integrative Medicine, 1530 W. Glendale Ave, Phoenix, AZ 85021 Phone: 602-242-4024 Southwest Aesthetic and Integrative Medicine, health@drluciani.com.
Works with Armour Thyroid and well versed in bio identical hormones!!

Pam

[laurawd]

Does anyone know a good thyroid specialist in Maine? (Boston is also a possibility, but Maine is preferred.)

Thanks!

[nonstickpam107]

laurawd, have you tried using the ArmourThyroid website docfinder? Have you joined either the MA or Maine thyroid support groups at yahoo? The website docfinder at the armour website uses zipcodes, so make sure you put in zips about an hour and a half drive one way radius to look. And then CALL and make sure that particular doctor REALLY does use Armour Thyroid for MOST of his patients (many have placed their names on the list to get patients..and then disappoint them...if that happens, email the website right away).

Give me some time to reach out to folks in that area too and see what I can find.

Pam