Thyroid tests are normal?? Are you sure?

[td4neal]

Originally Posted by julieboolie

Hi guys,

I just wanted to post my own experience. I had every symptom of hypothyroid - no weight loss, hair loss, cold, low pulse and BP, very low body temp, sluggish, tired, foggy head etc. I too was tested and told "normal". I didn't believe them.

I went ahead and did the "basal temperature" test myself. You take your body temp using a glass thermometer first thing in the morning for a week. Mine was about 96 all week. It's supposed to be 98.0 at least if your thyroid is normal. Obviously mine isn't.

Since the Dr. did nothing to help me, I went online. I found and have been taking a thyroid supplement. There are several options, but I decided to take dessicated bovine thyroid. I have been taking it for over a month and feel fantastic. My hair stopped falling out, I'm not freezing all the time, my mind is clear and I finally started losing weight again (been following Atkins for 9 months). I have been working on my dosage based on my body temperature. I am up around 97.5 in the am which is great! I feel so much better.

The more research I did online themore I realized it would be up to me to help myself. I'm so glad I did. Many people who take synthroid or other prescribed throid medicines don't have an improvement in thier health. The natural supplement works well for me. I will post alink for those who are interested. Not making any medical claims, by the way.

HTH- http://www.nutri-meds.com/thyroid.htm

Has anyone tried nutri-meds dessicated thyroid? I'm thinking about trying it since I'm having difficulty finding a doctor that will treat me.
I read online that one 130mg tablet was equal to 15mg or a quarter grain of Armour.

[Transplant]

I had heard that the OTC "dessicated thyroid" had everything BUT what you need for hypoT.

I sure wish this product were as good as armour.....no one would believe what I pay for mine, considering that it is not dispensed where I live

[Transplant]

Lilgrnize or Pam: if you see this, would you mind giving me the name of the doc in San Antonio? I have a good friend there that is struggling with a doc there and having problems finding another.

TIA

[Lilgrnize]

Transplant, I pm'd you.

[nonstickpam107]

Well, seeing as how MOST patients are on a maintenance dosage of 3+ grains of Armour, and seeing how we need to have FT3 and FT4 levels tested to keep our bodies fully replaced with the necessary hormones (not just a 'kick start' type of supplement....that OTC is fine if you don't HAVE thyroid DISEASE....but if you have thyroid DISEASE...than eventually the thyroid will stop working and that impacts your steroid hormones and your autoimmunity levels...seeing how 98% of ALL thyroid DISEASE is autoimmune Hashimoto's..and how I have five AU diseases cuz the Hashi's was virtually ignored and I was told I should just kickstart it with supplements...um...um....).

Different treatment for individuals...when your antibodies attack the thyroid until it shows up like a tiny rock on a scan (what most look like in Hashi's) and you end up with even MORE AU diseases, you can say "I wish I knew then what I know NOW" or you can keep a watchful eye on your Free T's and treat accordingly.

Pam

[scsef13]

I first suspected something was wrong with my thyroid back in 2000. My sister was hypothyroid, and my mom had been diagnosed with Grave's disease and was given the radioactive treatment. I asked my doc to perform a TSH test, and everything came back "normal".

Jump ahead to about 18 months ago. I started packing on the pounds although I didn't change my eating habits, and upped my exercise habits. In December of last year it became too much and I asked my doctor to check my levels. Everything came back "normal".

A month ago I got a phone call from my sister saying that she had been diagnosed with Hashimoto's (the same endo also diagnosed my mom with Hashimoto's which caused her Graves disease). So I go to the doctor with a list of tests that had been performed on my sister and demand they do the same tests. They did, and I got a call from a doctor telling me "everything is in the normal range except for your antibodies and a couple other things so we will just watch you."

Needless to say, I made an appointment with an endo (he is a member of the AACE which believes in the lower TSH range---they have a physician search page http://www.aace.com/memsearch.php?action=doSrch). After meeting with him he diagnosed me as beginning stages of Hashimoto's and agreed that I needed medication because I was suffering from very serious symptoms of being hypothyroid: tiredness all the time, weight gain, brain fog, low body temperature, cold hands and feet, worsening allergies, swollen neck, dry sin, brittle nails, hair falling out and getting more course, joint and muscle pain, change of moods, and did I mention brain fog.

Moral of the story....everything is not what it seems when it comes to thyroid testing. Be polite but firm with the doctors. List out your symptoms. Record your basal body temperature. If you can feel something is not quite right, don't take no for an answer. Maybe its time for a change in doctors.

Here is a list of the tests that I had my doctor perform:
thyroglobulin antibodies
thyroid perxidase antibodies
anti-thyrogloblin assay
t-3 total
t-3 uptake
t-4 total
Free t4 index
TSH

[nonstickpam107]

Addition to the list you are giving: Free T3. A must have ESPECIALLY if you take birth control or other HRT (Free T4, Free T3 and TSH is what most should have). Hashimoto's doesn't 'cause' Graves. Graves and Hashimoto's are two distinct, different autoimmune diseases. You can have the antibodies for both...I do.....but Hashimoto's has hyPER and hyPO 'swings'. TPO usually rules in/out for Hashi's.

T3 Uptake is actually a T4 binding assay test (needed if you are hyPER, usually not necessary if you are hyPO and being treated for it).

scsef, you don't say what type of hormone you are taking. We need to know the doc's that will optimize (there are lots of lists, including one at armourthyroid dot com) and treat with both T4 AND T3.

Pam

[Abbott]

For the past 3 weeks I have had symptoms that I can't figured out what is doing it. (Very tired during midday..will sleep for an extra 2-6 hours even after a good night sleep, weak arms and legs and just feel very tired.) Could this be my thyroid acting up or a reaction to starting a double dose of Glucosamine Chondroitin MSM 4 weeks ago, or a reaction to Metformin which I started 6 weeks ago. I did stop taking the Metformin 3 days ago and no change in the symptoms.

I would appreciate it if you could look at my last Thyroid tests that were taken in early June and see if I should be treated differently than I am.

I am on 100mcg of Levoxyl (T4) and 60mcg twice a day of compounded Triiiodo-L-Thyron slow release (T3). Have been on this for 11 months. My tests results were: FT4 = .77 (.59-1.97) FT3 = 2.8 (2.3-4.2) TSH = .42

Thank you

[nonstickpam107]

Is that a 'supplement'? Or is it being 'compounded' out of Cytomel? ...your FT4 is miserably low...and your FT3 isn't much better IMHO (I need my FT's midway of range and my FT3 in the upper quartile). If it's a supplement (from a 'holistic' doc..??) than it has no measurable amount of T3 in it.

I take Armour Thyroid. 3 1/2 grains to be precise. I can take T4 synthetic till the cows come home and it won't do anything but bring my TSH down...it won't raise my FT's.

Pam

[Abbott]

Pam
I understand from the pharmacists that he compounds this from Cytomel. I am going to a Naturopathic which happens to be the only Dr. close to me that will treat the T3.
He has always said he would prescribe as much as I needed to feel good rather than what the numbers say.

When the test was taken in June I was feeling ok. At the end of June I started taking Metformin and also the double dose of Glucosamine Chondrotin MSM a couple of weeks later. By mid July I was feeling really bad. Now I am trying to figure out what happen.
I went off of the Metformin last week and feel a little better, but not that much.

Could the Metformin have reacted with the functioning of the thyroid and made the situation worse??

I have an appointment with the Naturopath on Monday. Anything I should ask him? I know he can prescribe the Levoxyl and the Cytomel. However he can not prescribe the Metformin. I'll have to ask him why some medications and not others as I do not understand this.

[nonstickpam107]

Yeah, a big question...ask him exactly how much T3 (Cytomel) is in your compound, cuz your FT3 (and FT4) are way low (I don't know many naturopaths who know much about the Free T's....they like to look at the TSH and consider only that....my TSH was lower than yours for a year before my Free T's came anywhere close to midway. I take Glucophage (Metformin has something in it that I'm allergic to). If you are going to a naturopath, why not have Armour Thyroid rx'd for you?????? Why use synthetics?

Pam

[Abbott]

Thanks Pam.

My Naturopath does not go by the TSH....it is always my old primary Dr. who ask for the TSH to be tested and could'nt care less what T4 and T3 look like. I always have to argue with my primary Dr. to do the tests (No insurance to cover the Naturopath) that the Naturopath wants done. I know my Naturopath does not usually do Armour, but we will have to have that discussion again.

When the Naturopath got the tests results in June I remember that he was surprised that both my T4 and T3 were on the low side. Even made a comment that because of the large amount of T3 he was giving me that he felt the T4 was not converting any or a very minimum amount to T3. Because I was feeling fine we did not up the dosage. It is surprising that 6 weeks later I am so tired and weak....increased sleeping to an extra 4-6 hours a day!

My old primary Dr. put me on the Meformin during my last visit in June with my Naturopath's recommendation when he could'nt get blood sugar and weight loss to go down. I have been assigned a new primary Dr. by our insurance carrier and as yet have not made an appointment. It is like going in for root canal surgery!

Linda

[nonstickpam107]

Goodness!! I don't suppose you'd believe how MANY go to a naturopath JUST to get Armour instead of synthetics, lol. Well, ask just HOW MUCH Cytomel is in the compound...you need to know that anyway just in case you get in a fender bender and they ask at the hospital (cuz it can interfere with other things)...along with the clean underwear your Mom told you to wear, lol.

I look forward to my visits with my endo (one of the only 'endo's' that are thyroidologists and bio identical hormone specialists). You also sound as if you need other hormones balanced to the thyroid (does the naturopath do bio identical?).

I JUST went through a lot of email that was from many who see naturopaths...one's naturopath thought that 10mcg. of Cytomel was 'a lot' and didn't realize that the person needed to split the dosage throughout the day....also didn't realize the fiber used (methylcellulose) in the compounding/time releasing ingredients was reducing (through binding) that dosage by about 40%.

Pam

[inatic]

if 10 is alot, he'd faint at me taking 25mcg that is split through out the day( and i probably need to go up from that.

[3kidsMom]

Wow... this is really a lot of information for me to absorb. (I'm not finished with this thread yet) Just from what I've read already, I'm calling this week to set up an appointment for an evaluation by an endocrinologist (sp??)

[nonstickpam107]

Ah, but if it's just any ol' endo....then you are running the risk of finding a great doctor...for your diabetes. Not necesarrily your thyroid. Here's a list: http://thyroid.about.com/cs/doctors/a/topdocs.htm and just because someone recommends a doc to this board as wonderful for THEM, doesn't necessarily mean it will be your 'dream doc'. Another one is at www.armourthyroid.com the docfinder. OR you can go to www.healthcheckusa.com and order the Thyroid Profile II (Use check out discount code: 12345, under 90 dollars) and they send you to a lab near YOU and report the results to YOU. That way you at least KNOW if something is going on instead of spending 200 for the endo visit, and then 1500 for the tests.

Pam

[buniphuphu]

I've been reading this thread, and it has great information. I've been tested, but like so many others, my dr said I'm normal. My test results are as follows:

TSH: 4.010 (0.465-4.68)
FT3: 2.9 (2.3-4.2)
FT4: 0.9 (0.81-1.61)

My dr wants to take a wait and see approach and do more testing in another 1-2 weeks (this test is 1.5 weeks old). Meanwhile, my symptoms seem to be escalating rapidly. I started out being tired, unable to sleep soundly, and brain fogged with puffy/itchy eyes, constipation, weight gain, and dry skin (I'm sure there were others, but I can't think right now), but now I'm freezing, feeling increasingly disorientated, and I'm so fatigued that the muscles in my arms are shaking.

Any thoughts you have would be appreciated.

[nonstickpam107]

Buni, feel free to pm me...I have lists of docs that treat thyroid...you'll need to tell me WHERE you are though (what state, and any state lines that are closer than two hours driving time....most of us travel about one to 1 1/2 hours one way for a GREAT doctor). I haven't seen that 'range' for TSH for awhile, but usually anything over a 3 is considered suspect for hypothyroidism...can you ask your doc to run a Hashimoto's antibody test on you (anti-TPO)? You need to know if you have autoimmune hypothyroidism. And your FT's are almost at bottom (if not AT bottom) of range.

Pam

[buniphuphu]

Pam-

Thanks for writing back. I tried to PM you, but it wouldn't let me, so I'll answer your questions here. I'm in north central OK a couple hours south of KS and about 4 hours north of the Dallas area.

I'm headed back to the dr's office (today if I can get an appt), and I'll see if she'll run the anti-TPO test. She told me to come back if I was having a particularly bad day to do more testing, and since I've fallen asleep 3 times so far, I think this qualifies. I think she'll be open to doing the test even though she said I was "normal" because she wanted me to read up on hypo.

-marki

[nonstickpam107]

Marki, here is the entire list for 'everywhere':

http://thyroid.about.com/cs/doctors/a/topdocs.htm

Another good place would be: www.armourthyroid.com look at the 'docfinder' there.

One of the best websites on the net would be: www.thyroid.about.com and join the forum there...the people there are just great, they will help, also read the site...and do searches for questions you have.

Some of us go through five or six doctors till we find one that is very savvy on thyroid...hence the lists. Now, if you call a Top Doc's and they can't get you in right away, ask to be put on their 'cancellation' list too...don't just give up! Most of us are travelling up to two hours ONE way to get a great doc...but then again, once you are stablized on the hormone, you are only going to have to see this doc about two to three times a year. Good luck!! Let me know if you need any more help.

Pam

[Lilgrnize]

Marki,

I just started seeing a doctor in Lewisville, north of Dallas, who treats based on symptoms more than labs. He does monitor labs, but doesn't necessarily believe in "normal range" and explains in great length on first visit why he doesn't. I could safely say he would consider you hypo based on your labs and symptoms. He and his entire family are also hypothyroid, so he completely relates to the symptoms, and never makes you feel like you're nuts.

He doesn't take insurance, but his rates are VERY cheap, and he draws labs in his office, and they're very inexpensive, as well (TSH, ft3 and ft4 is $45). I know that's a long haul for you, but I travel 6 hrs one way to see him, and I'm finally, after many years of being sick and told I was crazy, starting to feel somewhat human again, so he's well worth the drive. He's open on Saturdays for out of town patients, and can normally get you in quickly.

If you'd like his info, feel free to pm me.

[nonstickpam107]

Thank you Niki for the info and for helping!!!

Pam

[buniphuphu]

Niki & Pam-

Thanks for the info!

I saw my dr again today, and she turned on me. She jumped down my throat then told me I'm just depressed (which I argued with) and then she diagnosed me with insomnia and sent me away with an rx for sleeping pills.

Looks like I'll be shopping for a new dr.

[nonstickpam107]

Ah....but...did you tell her the number two symptom of hypothyroidism IS depression???? I hope you find a doctor who is really good!!! I have my fingers crossed for you!

OH, and I think it's very important to give reccommendations of GOOD thyroid doctors....but here's a place to put your comments about 'not so good' thyroid doctors (wait'll ya see the 'famous' docs on this list!! and there are some from the 'Top Doc' list on there, too...so read first before calling).

http://www.voy.com/171167/

Pam

[Lilgrnize]

I have an rx for valium that some dumba$$ doc prescribed for me about 5 yrs ago, telling me it wasn't my thyroid, I was just stressed...who wouldn't be in my situation? Single mom, 2 jobs, no child support, a son with a drug problem, a daughter who signed up for everything you could sign your name to...2 softball teams, band (she was one of the top drummers in the state, so we traveled alot to competitions), plus all the academic clubs she enrolled in...my daughter is a parents dream come true, but she almost killed her mom who was unknowingly suffering from Hashi's and sever hypothyroidism! I was a real ***** and filled that rx for valium and still (after 4 moves) have it sitting in my window over my kitchen sink...not one pill is missing...to remind me I'm not crazy and never needed it!

[nonstickpam107]

Well, some hypothyroid sufferers do well on an anti depressant UNTIL their thyroid levels come up (in some cases that can take well over a year...it did for me). I used Wellbutrin (lowest dose) for about six months until my endo could stabilize me (I see most women who are entering menopause AND go hypothyroid using this technique a lot). It had a wonderful side effect on me, lol. I quit smoking after over 30 years of addiction to nicotine. I can't see where Valium would be the 'anti d of choice' though for a hypothyroid patient...way too addictive. Good for you Niki for making sure you took care of YOU.

Pam

[buniphuphu]

Turns out the dr rx'd an anti-depressant after all, trazodone. I took a dose last night and woke up at 12:30 am with the right half of my face feeling like silly putty. Now, the upper half feels numb.

Normally when I take meds I read the patient info that the pharmacist gives me. I didn't yesterday because I felt so out of it. Grrrr....

[nonstickpam107]

WOW...Trazadone???? Holy Moly Cow...I know people who are severely depressed (seeing a couple of psych doc's) and they don't take anything THAT strong!!

Pam

[Lilgrnize]

Pam, interesting update...my DD (20) has complained with all these seemingly obscure symptoms off and on for years. Even I would get irritated with her, thinking, "toughen up!" at times! Now I'm feeling ever so guilty! She's felt like the walking dead this week, stayed home from work (which is unusual for her) and called me yesterday, asking what doc she can go to on her plan, she's sick of feeling sick all the time and needs help...she started listing all her ailments at once...normally I just get them one at a time, a day here and there. OMG, it hit me! This kid is suffering from all the "unrelated" symptoms that I began suffering from consistently right around her age!

She got an appointment, but was last minute, so I didn't have time to leave the office and get there to go with. She was so cute, when they took her in, she pulled out her cell, dialed my number, handed the doc her phone and said, "you need to talk to my mom!" I spoke with her, gave her my history and dx, told her what labs I wanted run, at a very minimum (TSH, ft4, ft3). She spoke w/DD briefly about her symptoms and immediately ordered "the labs her mom has requested" plus more. Instead of just calling her with results, they asked that she make an appointment for next week when I could come with her to review her labs so that I may ask questions and in case, based on her results, the doctor would like additional info on my dx and course of treatment.

Here I am traveling 6 hours one way to Dallas...wouldn't it be a hoot if we find a good doc right here in this little one-horse town!

[nonstickpam107]

Niki, I'm seeing a whole lot of 'doctor teaching doctor' around here lately. I told my endo that a friend of mine doesn't have insurance, and although she would like to stay with her PCP, that he doesn't do anything but TSH, won't discuss T3 therapy, etc. Well, guess what? My endo does speaking engagements several times a year and he also takes in a few interns and teaches and my friend got her doctor to call my endo.

So...now there's ONE doctor in my town who is learning about optimized treatment for thyroid patients (and he's also learning about bio identical hormone replacement). Why can't you have the doc your DD is seeing get in touch with YOUR doc in Dallas?? Call the doc in Dallas FIRST and request (since they have 'the way' down pat, lol).

Pam