Thyroid tests are normal?? Are you sure?

[Rustyjack]

Pam,

Finally got copies of my last two labs.

4/10/04

TSH 0.67 uIU/mL 0.350 - 5.500 DA
T4 Free 0.8 ng/dL 0.61 - 1.76 DA
Triiodothyronine, Free, Serum 2.9 pg/mL 2.3 - 4.2 DA

This was on 1 1/2 grains of Armour. She took me off Armour and put me on the T-100. I took that for about 6 weeks than I switch back to Armour for a week. Had the discussion with you about the switch and you said stop Armour for 6 week then retest.

This was test after 5 weeks of no Armour.

TSH 3.799 uIU/mL 0.35-5.5
Free T4 1.06 ng/dL 0.61 -176
Triiodothyronine, Free 2.5 pg/mL 2.3 - 4.2

She put me back on the 1 1/2 grains of Armour and retest in 6 weeks.

Jackie

[emily1965]

I can't believe tehy moved this after over 300 posts.

It's too bad because those in the main low carb lobby need to be able to see it, since it's aimed at those who may not realize they have a thyroid problem.

[nonstickpam107]

Hmmm, maybe someone in administration should edit out all the "bumps" in this post and make it a sticky on the Health boards....hmmm, hint, hint?/

Oh, Rustyjack, your FT4 and FT3 should both be in the midway to upper in their lab ranges....and doctors who don't do much Armour don't know to about ignore the TSH once you are medicated and go by the FT's. One and a half grains is a good place to start tweaking with you though....now, your FT4 is going to be low when you are on Armour. BUT...you obviously aren't getting enough Armour for your FT3's to be as low as they were in April. Hope this makes sense to you. Many doc's put a little synthetic T4 (say, 50mcg's with 1 1/2 grains of Armour) with the Armour to bring that up, many others switch you to a T4 and Cytomel (synthetic T3) regimen.

Pam

[cenicienta]

I am so glad that I found this thread!!! I am still waiting for a call back for an appointment with an endo. For years I was told that I didn't have a thyroid problem. My TSH tests were all normal. I was stupid, I just trusted the doctors and didn't realize that there were more tests that could be done. No doctors even mentioned that there were other tests- they didn't even want to pursue further testing despite the fact that I have hypothyroid symptoms and an extensive family history of thyroid problems (mom is hypothyroid and aunt had her thyroid removed at 16)I had to demand that further testing be done (after I got the internet and did some research on my own) and low and behold, something came back abnormal. But I have no idea what that indicates. Here is what the lab results were. Maybe someone can interpret them for me better than I can since my family doctor's office was lax on even letting me know that I had a problem. In fact, they are the ones holding up my appointment to see the endo since they haven't sent out the necessary paperwork yet. i have called on three different occasions to ask that it be sent out. My hands are tied since the endo's office won't make an appointment for me until my family doctor sends the paperwork out. Ugh!!! Anyhow, here are my levels (according to the family doc's office) Here I am, still suffering with cold hands/feet, achy and tight muscles, depression (I am on Zoloft for this, but may not need it), weight gain and inability to lose despite running 2 miles every other day and six on weekends and diet control.

TSH : 3.54
T3 : 0.96
T4 1.01
Thyroglobulin AB (all they told me was that it was positive and a little high - they wouldn't give me numbers)

I also asked for a free and reverse T3 and T4. Whether they did that or not, I have no clue. On the sheet that was mailed out to me it said that the free T3 was normal. They had claimed that the time before that they had done a total T4. The way the sheet was worded, it sounded as if there were other antibodies tests done that turned out normal in their opinion. The last line in the report sent to me states "Your current thyroid function is normal" Bull!! Not if antibodies are attacking it!!!!

Which other tests should I be demanding to be done?

Any info you can send my way will be greatly appreciated in order to end my nightmare.

Thanks,
Jennifer

[inatic]

you sure look hypo to me..You didnt put the lab ranges eg.. TSH 3.54 (.4-5.5)

Your tsh is high.. not out of "normal" but high enough to make those of us medicated feel cruddy. Again you didnt put lab ranges.. but it looks like you are NOT producing any T3 and your T4 is low.. That would explain all your symptoms and the need for antidressant. and if your antibodies were above 2.. sounds like hashi's or you could have a combo of hashi's and graves.

I hope you get that call soon and I hope you have chosen a Dr. from that list at about.com or you maynot get the answers you are seeking either.

[cenicienta]

I'm not sure what the lab ranges were for my tests. I had to beg and plead in order to get the numbers that I did get. All my family doc told me is that I needed to see an endocrinologist to discuss the positive thryoglobulin antibody test. I looked at the site for top doctors in my state (Wisconsin), however none of them will be covered by my insurance. Ugh! Still haven't received my call yet.

Jennifer

[nonstickpam107]

Sounds like Hashimoto's. Are you (or better yet, the doctor) aware that the makers of Zoloft issued the same Rx. warning as Paxil and Prozac have? Zoloft will DECREASE thyroid function AND raise the need for hormones, so having Hashi's AND taking Zoloft would be totally counterproductive. Do NOT expect just "any" endo to help you out here...most endo's aren't very good at medicating subclinical hypothyroid...some don't "believe" in medicating Hashimoto's until it's killed the thryoid, some don't believe in using T3.

Sadly, most of us have to really dig for a good thyroid doc.

Glad the posts and this thread helped...Wellbutrin seems to be a good choice for an anti-d (after you take some time to wean off the Zoloft)....and if you get your T3 up to normal, you may not need the anti-d after all. Good luck....there are Top Doc's listed for your area.

Also, you might want to save a bit of money (don't we all!!) and call around to your local pharmacists, and ask them the names of the doctors who Rx. Armour, or Cytomel for their patients. Maybe you will be able to find a GP who knows thyroid well.

Pam

[cenicienta]

Thanks Pam!!! You are a sweetie!! I finally got the call I was waiting for yesterday afternoon. I think that I made the nurse's day when I told her "Your call has just made MY day!!!" After reading about Hashi's and what you have posted about it, I probably do have it. I have learned (by dealing with my daughter's doctors - she has a rare syndrome called Klippel Trenaunay Syndrome - The pro golfer Casey Martin has it too) to be pushier with doctors and not feel guilty about getting witchy with them. I think the same can be said about dealing with endo's too. I fully intend on coming into this appointment armed with all of my info and ready for battle. I will not accept the "wait and see what happens" response. If I do have Hashi's, my thryoid is dying more and more every day and my potential for developing other autoimmune disorders is rising as well. Anyhow, my appointment is for Oct 12. Do you think that I should contact my family doctor (the one that prescribed the Zoloft) about helping me to wean myself off of it before my appointment with the endo? You said Wellbutrin works better with thyroid patients. I wonder if you need to wean yourself completely off of the Zoloft before starting Wellbutrin. I am thinking that I need to keep my antidepressant at least until I get my thyroid regulated, that and I suffer from seasonal depression and migranes (the reason that I was put on Zoloft to begin with). Fall and winter in Wisconsin really get me down.

Sorry for the long post and my rambling on. You all have been so supportive!!!


Jennifer

[nonstickpam107]

Um, might as well write this down,too. Migraines are a symptom of un or undertreated hypothyroidism

I fully agree with using an anti -d until you are stabilized. Hashimoto's isn't called the "roller coaster" for nuthin'. I would, in all honesty, call the Doc that Rx'd the Zoloft and tell him that I want to wean off and start something else instead (there are so very many, I don't recommend Wellbutrin alone....I just KNOW so many with thyroid disease on it and it seemed to help them).

[cenicienta]

Thanks Pam!!!

[nobimbo]

Pam,

I just got back from my long-awaited appointment with a "top thyroid doc" (he was on the list at the about.com site, and had a glowing testimonial from a patient). This is the first endo I've seen in 22 years, btw. I'd like your opinion of what this doc said.

First of all, I told him about my health history (pcos, diabetes, high blood pressure, heart rhythm problems (SVT), fibroid/uae procedures) and about my symptoms (painfully slow weight loss, thinning hair, menstrual irregularities, low morning body temps, tinnitus, and more recently, arthritis in my feet, and paresthesias in my feet and hands (off and on). I also told him about (and brought with me) my blood work reports over the last year (my latest FT3 and FT4, in June at the gyn's, were over the midpoint of the range, and my TSH has ranged from 3.0 last Sept. to 1.4 a month ago at my GP's office). I also told him that while my thyroid tests are in normal range, my TPO antibodies test last Sept. came out 58 (range was >60), and I told him how my GP told me "you do not have Hashi's".

He told me that I do have Hashi's if there are any antibodies present, no matter what the level. Then he felt my neck and told me that my thyroid is firm, which also points to Hashi's. He had me raise my hands over my head and swallow, and I did have some trouble swallowing.

He said he does not go by blood tests, because the tests aren't sensitive enough to show hypothyroidism, he only goes by symptoms and body temps. He wants me to try a trial of 25 mg of Cytomel. He said Cytomel is the only thing he ever prescribes. He also said that trying a trial run of Cytomel is the best way to diagnose hypothyroidism, to see if symptoms improve. That is also the way he modifies dosages, by how the patient feels.

I told him that I understand that my symptoms can be caused by low ferritin (mine last month came out 15, although my iron, RBC's, hemocrit and hemoglobin are in range), as well as perimenopause and/or PCOS, and I would like a female hormone panel run as well as a FT3, FT4, and TPO test. He agreed to that, although he didn't think the thyroid tests are necessary. He said he only orders repeat TPO's on Graves/hyper patients.

I told him I want to wait and see what the tests show before starting on the Cytomel, and he was fine with that, and went ahead and wrote me a prescription so that I can start it whenever I want. He also gave me a prepared handout that he obviously gives to all his patients with the tittering schedule (i.e. take a half a pill a day for a week, then 1 pill a day, then 2 pills a day). I asked him why he only prescribes Cytomel and never Armour or Synthroid. He said that since T4 meds have to be converted to T3 and since T3 is the active hormone, it has always made more sense to him to just use the T3.

He is very open to bioidentical HRT and gave me a handout for a pharmacy very close to my house. He claims that since his signature is on the handout he gave me, that he does not need to prescribe it himself, that the pharmacist can just compound it and give it to me. That is not the way I understood it to work, I thought the compounding pharmacist looks over the bloodwork and makes his/her recommendations, then the doc has to prescribe it?

He was very nice and seems very flexible and open-minded. However, he is very old and scatter-brained. When the nurse came in to give me the lab requisition he had ordered, I noticed there were no thyroid tests listed at all (he was only interested in a fasting insulin test for me, since I've never had one, and he only checked that, FSH, LH, and estriadol). I had to wait 30 min., until he was finished with his next patient, for the nurse to get him to add the thyroid tests. I wrote down on a piece of paper for her to give him "FT3, FT4, and TPO antibodies". It was after I left that I realized he checked total 3 and TSH, although he did write down the antibodies. He also forgot to check progesterone so I checked that myself. FT3 is not even listed on the form to check!

So, he earns points for thinking outside the box, being willing to treat symptoms and not solely rely on blood tests, and for being open to bioidentical hormones. However, I am very concerned about his "one size fits all" approach to treatment. While I've heard wonderful things about Cytomel, I've also heard that some people just can't handle it well, especially when ferritin is low. I told him about my concerns, and he said he's been prescribing it for many years, and as long as it's started off slowly there usually isn't any problems. He said if I don't feel well on it, I can just call him and stop taking it. Hmmmm, but then what would he do, since he doesn't prescribe anything other thyroid med? (Didn't think to ask him that). I don't want to have to deal with heart complications (since I already take a med for a fast heart beat). I actually feel pretty good most of the time, and my temps are starting to go up (my afternoon temp today at the doc was 99.2!), although my morning temps are usually in the 96's before ovulation, and 97's after. I am taking 200 mcg of selenium, fish oil, black currant oil, and lots of other supplements, and I am wondering if it's possible to naturally lower the antibodies to keep them at bay, at least for a while, to be able to hold off on taking thyroid meds until replacement is necessary. I'll let you know what the TPO test is when I get it, but until then, what do you think of this doc and my situation? Do you think I should go ahead and try the Cytomel?

TIA,
Linda

[nonstickpam107]

First off...I know who you are talking about....a few people like his method, I know personally of two who were overmedicated and "chucked aside" when they couldn't "get with the program" (doesn't everyone wear a size 2?????). So...that's my take on it.

Second, 25 MG of Cytomel could kill someone....do you mean MCG ?? I hope so. Thirdly, I can barely function on a low T4...low T4 in ME (as well as probably 75% of all the hypothyroid/Hashi's women I know) presents as terribly joint pain, aches, bloating, feeling "wired". You do what works for YOU. I know one in particular who has written/corresponded with me over the past three months...so overmedicated as to require two ER visits, and Klonopin for two months. I don't know anyone, at any time, ever that has been able to just start taking that much Cytomel....most start with 5mcg. twice a day at most and go from there.

I would NOT want someone Rx'ing T3 for ME without having a FT3 test, a FT4 test, and I certainly wouldn't want a doctor who wouldn't Rx. me a combo, or at the very least, compounded, time released T3 (Cytomel).

I know of over 30 women (two from here just recently) who have had the WORSE luck with going with JUST a compounding pharmacy...terribly overmedicated (one of the ones went to this same doc, BTW), bloated up on progesterone (this compounder likes to believe that every woman in the world is estrogen dominant). Salivary tests (not blood tests) have not boded well for most of us...just in case this pharmacy sends you for salivary tests (they can't take blood...they aren't doctors!!).

Your question of what this doc would do if you can't tolerate these huge starting dosages of T3...is a good one, one that several others wished they had asked up front.

That thinking of "every hypothyroid patient needs ONLY T3, since the body converts" is un-scientific at best. You might want to go to www.thryoidmanager.org and look at the conversion percentages. MOST normal human beings (ones without thyroid disease, mind ya) convert roughly 5 to 7% of their T4 into T3. The rest of MY T4 incoming must be used to alleviate my bone achiness, cuz if my FT4 levels aren't midway of range, I suffer greatly.

That's about my full opinion (betcher glad you asked, lol). I like a doc who thinks outside the box, too, but when you start hearing patients on forums talking about what is working and what is NOT working for them, you tend to listen up. I don't care for a physician who decides everyone is alike, and that they only need one medication (out of a huge list) and then doesn't want to workwith the patients who don't conform to that.

Pam

[nobimbo]

Thanks, Pam. After all the reading I've done before my appointment yesterday, and last night and this morning, and now with your input, I am way too afraid to start any treatment with this doc. It's going to probably take me another couple of months to get into another endo, so I will take advantage of the tests he's ordered and have those labs run (I gave him my fax number and he agreed to fax me the reports). I am very interested in my TPO ab's. I realized last night that he (or the nurse) forgot to include the fasting insulin test on the lab rec (just fasting glucose), but I don't think I'm even going to bother with calling that office and getting that straightened out, since I will be seeing another endo.

I originally was going to pm you yesterday to ask my question, but decided it was best to post it here so that others can learn from my experience. Unfortunately, the "top thyroid docs list" is not always trustworthy, since it is usually based on one patient's opinion.

Thanks again,
Linda

[nonstickpam107]

Oh, and don't forget to run a few lines about this over at the voy forums. People ask me how I "knew" my thyroid doc was right for me. I knew the very minute he sat down with me and the lab results (which included EVERY hormone, EVERY adrenal test, and a fasting C peptide level and insulin...just four whole pages) and took two hours to go over it all with me. He told me he expected his insulin resistant and thyroid patients to 'tow the line' in the lowcarb department and that if I ever felt something was questionable, he would either have a good answer, OR we wouldn't do it. He knew that some of the compounding pharmacies that were 'hooked up' to a doctor to dispense hormones based on salivary tests (things such as estradiol, testosterone, progesterone don't fare well on these) weren't very good.

The Rx's he writes can be taken to the compounder of YOUR CHOICE (yes, he will recommend) and they are individually generated. If I don't feel well, he doesn't waste time trying to tell me that what I'm feeling isn't related to what he's treating, we discuss what might help. His staff (NP and two nurses) will come in on the discussion with any recommendations they can make, or will relate the outcome of another patient with similar results. I can come in anytime to get a blood lab (or slip), I can bring med in that I feel is subpotent and have it tested.

Now that you are packing to come to NE Indiana....... well, you might want to join one of the State groups for your State. As a matter of fact, I do believe I'm going to look up the State groups listing and post it soon.

Better luck soon....OH, and WAS that 25 MG's or 25mcg's? If it's 25mcg's, then cut it in five parts (creative med cutting 101) and take one part in the am, and one in the pm and see how ya feel. Just my opinion.........and if it WAS 25MG's I'd betcha the pharmacist would have something to say about it if you tell him/her this is a starting dosage, and what can you expect. LOL

Pam

[nobimbo]

Pam,

It was 25 mcgs, sorry I goofed. The starting dose according to this doc is 1/2 for a week, then a full one for a week, then one and a half for a week, then the final dose is 2 a day (one in the morning, one in the late afternoon/evening).

I did join the yahoo Missouri thyroid group, but that wasn't much help in terms of doc recs for St. Louis. There are a few more docs listed on the top doc list, and I have my eye on one of them.

I want to see what my TPO test shows (having that done tomorrow) as well as my female hormones, and I will go from there. I feel like my first TPO test results are questionable, and my symptoms can be female hormone-related (perimenopause), low ferritin (working on that), or even adrenal-related (would like to get evaluated for that). I just don't want to begin thyroid meds if I am uncertain that I have a thyroid disorder.

I wish you could clone your doc for the rest of us, Pam.

Thanks,

Linda

[nonstickpam107]

Bumping for newbies.

Pam

[NancyC]

Pam, I went to about.com and did a search for "goitrogenous foods", but it said there was nothing on that topic. Am I spelling it wrong?

[nonstickpam107]

You can try "foods that slow thyroid", or "list of goitrogens".

Pam

[Rustyjack]

Originally posted by Rustyjack
Pam,

Finally got copies of my last two labs.

4/10/04

TSH 0.67 uIU/mL 0.350 - 5.500 DA
T4 Free 0.8 ng/dL 0.61 - 1.76 DA
Triiodothyronine, Free, Serum 2.9 pg/mL 2.3 - 4.2 DA

This was on 1 1/2 grains of Armour. She took me off Armour and put me on the T-100. I took that for about 6 weeks than I switch back to Armour for a week. Had the discussion with you about the switch and you said stop Armour for 6 week then retest.

This was test after 5 weeks of no Armour.

TSH 3.799 uIU/mL 0.35-5.5
Free T4 1.06 ng/dL 0.61 -176
Triiodothyronine, Free 2.5 pg/mL 2.3 - 4.2

She put me back on the 1 1/2 grains of Armour and retest in 6 weeks.

Jackie

Pam,

This was my test after 8 weeks of 1 1/2 grains of Armour.

TSH 1.562 uIU/mL 0.350 - 5.500
T4, Free Direct 0.97 ng/dL 0.61 - 1.76
Triliodothyronine, Free 2.8 pg?mL 2.3 - 4.2

Now she has add another 1/2 grain to the 1 1/2 to be split. 1 grain in morning and the other one after lunch.

[nonstickpam107]

Well, I'm on two grains myself...all at once, but compounded. I don't know WHY a doc would be so cautious......do you see where your T3 is at? Your T4 is going to be low on Armour (many add back a teensy bit of T4 once their TSH is suppressed...about a .45 or so, and their FT3 is in the upper half of range).

So....on you go...you will be doing great if this doc keeps on top of things and doesn't stop titrating until you feel really well. Looks like you are making progress...how are your symptoms though?

Pam

[Rustyjack]

No improvement in symptoms. Still tired, no energy, and sleepy, memory still bad. I guess the memory could be old timers.

[nonstickpam107]

Have you asked her what she has in mind as a goal for you? Do you realize that the same dosage of thyroid med can actually show improvement in the patient for a good six months? I don't want you to have unrealistic expectations either...it took me about a year and a half to finally feel a lot better, and I'm still improving...I'd say once your TSH is down below a 1 (even way, way low), and your FT3 up to 3/4 of lab range that might be where you will feel normal, and continue to improve month to month.

Again, the difference in treatment by certain docs, too...my endo would have raised you an entire grain with those labs...not a half grain...and would have me splitting the dosage, too.

You also have to figure in where you cycle stands/age....as the estradiol goes down, or if you are low in progesterone (doesn't matter if you've had a hysterectomy...your thyroid needs a good level of progesterone to function)...both of these will also mimic hypothyroid symptoms and taking birth control pills, HRT of any sort, eating calcium/iron/fiber within six hours of your Armour, having a low ferritin level, or adrenals being off will bind the incoming hormones/have symptoms similar to hypothyroidism.

You are on the right track, all in all.....it takes quite awhile to achieve feeling well...it's not at all like taking other types of meds, like an antibiotic.

Pam

I know a woman on 10 grains of Armour and an additional 25mg. of Cytomel!!

Pam

[Rustyjack]

I'm 61 and have been on estradiol since hyst at age 33. On Climara 0.1 mg, ( estradiol is 76) prometrium 2x a day. I know that my progestrone isn't high enough yet as she change me from the cream to prometrium. Also, on testosterone cream. She tested my adrenals only the morning one. Says they are normal.

Cortisol Am 14.1ug/dl 4.3 - 22.4 DA
Progesterone 4.2 ng she wants it 10-25.
Testosterone 0.9 pg she wants it 1-2.5

[nonstickpam107]

Well, you know that estradiol and the prometrium will bind some of the thyroid hormones, that's why most of us on HRT need a higher dosage of thyroid to bring the FT's in the midway to upper ranges. I would think this doctor would want to raise your Armour to compensate...but a lot of docs are cautious....I don't blame her for going slowly with titration...my endo did too ..... he would only raise me about .25mcg. of T4 and then went by half grains until my TSH was suppressed and my FT3 was in the higher part of the range.

How is the addition of the testosterone going? Is it helping with muscles? With weightloss? I go to my endo tomorrow and he said he was going to start adding a bit into the 'mix' for me...mine was very, very low and I'm feeling the fatigue...I also think my Armour needs to go up though.

Pam

[Rustyjack]

I can't tell any difference with the progestrone or testostrone. I have fibromylgia, so that maybe why I can tell on the muscles.

Since I'm splitting my armour, when should I take my vitamin?