Hypothyroid Question

[Tricia B]

I was diagnosed hyopthyroid by my OBGYN in the 1980's.  He put me on 1 grain of synthroid and I did very well for over 15 years. About 5 years ago I started seeing an endochronologist and he did extensive testing and found that I was overmedicated. So, after a year of fluctuating meds he got my numbers straight. However, since that time I have steadily put on weight and continued with symptoms of hyopthyroidism. I was at 120 lbs, but now am at 180 lbs.  I diet and no I may lose 4-5 lbs. but they come back the next week.  I am bone-tired, horrible circles under my eyes, no good night's sleep in years, bruise easily. I was thinking that maybe I had Cushings, but my endo didn't even want to hear of it -- says that I am just getting older and must eat less and move around more.  I have been dieting for the past 2 months religiously and am still the same weight and still bone tired.  Help!!!  What could be wrong?

[Mark Lupo, M.D.]

Likely there are multiple issues at work here - focusing on thyroid, my guess is that you were on a higher dose than your body needed and that now it is "normal" but you became accustomed to being "hyperthyroid."

  A little background on how experts think about this -

The treatment of hypothyroidism means striking a careful balance between a patient's symptoms and the lab (usually TSH) value.  TSH is the most relied upon lab by thyroid experts world-wide to determine appropriate levels of thyroid hormone replacement.  It does not directly reflect tissue activity of thyroid hormone but there is no test available that does that and TSH is the best approximate we have now.

That being said, the target TSH is 0.5-2.0 for a patient on replacement.  In general, patients who are older or have heart disease do better with a TSH that is not <0.5 as shown in several studies that these patients have increased risk of premature death.

Younger patients who are otherwise health may feel better with a TSH that is slightly lower than 0.5.  There are definite risks associated with TSH <0.1 even in patients who "feel fine" -- studies show that a TSH this low over time can significantly alter heart function.

Now - in your case you may want to look at the TSH value and make sure it is appropriate for your situation -- if you feel it is too high, talk to your doctor about a dose increase to see what if symptoms improve.

Cushings is easy to screen for with a midnight salivary cortisol level (recent JCEM article confirmed this if your doc asks) -- it is THE ONLY salivary hormone that has been been proven to be clinically useful, although in the future others may be as well....

[ancientmariner]

Did you FEEL overmedicated? It sounds to me like your doctor only tests TSH. But TSH measures a hormone from the pituitary, not the thyroid, so it does NOT tell how the thyroid is functioning. When you throw a whole lot of thyroid hormone into your body at one time (Synthroid dose), your pitutiary senses that and puts out less Thyroid Stimulating Hormone, causing the TSH level to be low. And to many doctors a low TSH means that you are overmedicated. I think you are under-medicated! My GP did the same thing to me, and that prompted me to start doing some research. I found Armour thyroid, asked him to prescribe it, and am now beginning to feel like my old self after 3 long years on Synthroid.

[Tricia B]

What are the symptoms of being overmedicated?  My endo says that my thyroid is "fully supressed", meaning that it doesnt work at all.  Is 1 grain of Armour (what I used to take I do think) the same as 125 of Synthroid?  I am just beginning to think that I am just an old woman (52) that is fat and tired.  My fingernails are thin and break, hair falling out, dryyyyy skin, absolutely no sex drive for about 3 years, and headaches on left temporal side of head. However, I read something on the internet recently that said that if your body gets used to being overmedicated, your body doesn't feel good when the levels look to be ok when tested.  Have you heard of anything like this?

[ancientmariner]

One grain of Armour is equivalent to 74 mcg of Synthroid. I have never heard of getting used to being overmedicated. If you are taking too much thyroid medication, you will have hyper symptoms, rapid heartbeat, hand tremors, etc., and I don't think your body will get used to it - if it would, then why do they medicate people who have hyperthyroid? That makes no sense.

And it really ticks me off when doctors belittle our problems. I am 5'6" and when my thryoid was hyper, I weighed 103 lb. As soon as I had the RAI, I started to gain weight. In 3 months I put on 50 lb. - the endo and the GP both told me it had nothing to do with my thyroid, it was my age - I was 46 at the time, and postmenopausal. All my life, I was fighting to gain, yes GAIN, weight, and gained about 10 lbs with menopause. But after the RAI, suddenly I started gaining and couldn't stop and the only thing that had changed was my thyroid. But the docs said it wasn't that. I had joint pain, and they laughed and said it was because of the extra weight. The endo even talked to me about the relationship of diet and exercise - I had never exercised when I was thin and never watched what I ate, but at the time he said that, I was walking at least a mile a day and eating nutritionally balanced meals.

After I started Armour, the weight gain stopped. I haven't lost more than a couple of pounds yet, but I believe that I can, if I can take enough Armour to make me feel completely well. If I "overdose" on Armour, I will know it, because I will feel hyper, and I know what that feels like. And the solution to that is not to take Armour for a day, then start back on a slightly lower dose. If I were to take too much for a long period, yes, it could be dangerous, but I think I'm smart enough to know how I feel without someone telling me I must be hyper by some marks on a piece of paper.

Bottom line is that how you FEEL is much more important that a lab report!

[Tricia B]

I really do appreciate someone that can relate to what the endo is telling me.  Thank you so much.  I know my body more than anyone else -- my mother even came with me to the endo one time and told him that this wasn't her daughter -- that I was not usually overweight and tired.  He just told her "Oh now, don't talk about your daughter that way!" and dismissed her.  She was appauled (sp).  I hadn't thought about the Armour med since I was taking it those many years ago, but I do think you have something there.  Ever since I started with the Synthroid I have been gaining weight - and it hasn't stopped.  I do remember when I first began seeing the new endo years ago that I was having heart palps and the hands shaking -- that is why he said I was taking too much I suppose.  But not that I think about it, when he started the Synthroid is when I began the weight gain! It must upsets me that I have wasted a year and half feeling this bad with this doc because he hasn't listened to me.  Now I am on a quest to find a new doc that specializes in thyroid disorders here in the Baton Rouge, Louisiana area.  Any suggestions anyone? I just want to feel like the person I used to feel like 5 years ago!  I don't even want to leave the house at this point.

[ancientmariner]

You might be interested in joining the Natural Thyroid Hormones forum on yahoo to learn more about Armour vs. Synthroid. Also, many people have found that naturopaths or osteopaths tend to prescribe natural medications (Armour) insted of synthetics and tend to treat symptoms more than labs.

[Tricia B]

Thanks very much for the tip.  I am going to check it out this afternoon.  I am happy I have finally found people that actually understand what I have been going through and don't think I am either nuts or a hypocondriac (sp).  Thank you very much.

[Pirategold]

I have had a similar experience.  I was on Armour, then one day my doctor said that he wanted to change me to Synthroid because Armour was not consistent in dosage and Synthroid was better.  So, I changed.  Started gaining weight, eventually started experiencing heart palpatations, thin and cracking nails (which I began to peal and tear at because I was so shaky), hair falling out, and left temple pain, and a severe twitch in my left eyelid, shaky hands.  BTW another doc had me taking potassium iodide also for three months.  I couldn't sleep at night because my head was so hot, I began to grow hard skin on my scalp and on my calves of my legs.  I experienced anxiety attacks.  I thought I was going crazy, before I realized that it was related to the iodine and the thyroid meds.  I requested to be given Armour again and the pharmacy gave me a generic for Armour which I did not even notice until seven months later.  I had many jittery feelings.  Now that I am back on Armour, I'll never change.

Pirate

[Tricia B]

Thank you doc and everyone for the comments.  I did ask my endo to fax my last blood test results which were taken on May 24.  Here they are:  Free T4  1.13; TSH 2.27; Total T3  137; FSH 26.0 .  I am 52 years old and had a hysterectomy 15 years ago.  Do you think I need to be put back on Armour?  I am taking 125 Synthroid once per day right now.  Previously I was taking Armour 1 grain in am and 1 grain in pm.   I had forgotten all of these details until I wracked my poor feeble brain for these details.  My brain doesn't work well -- I don't remember simple things, like the name of a "dog" -- or what the thing that you waive in front of you face when you are hot "fan".  I really think I have lost my mind.  Hopefully it is the thyroid levels. I am changing doctors and just wanted to see if the above levels sounded like they needed to be adjusted.  Can someone please let me know?  Thank you so much.  I hope my life gets back to normal one day!

[Tricia B]

Pirategold:  I think it is really something that you had the same left temporal headaches that I have!  they even did a CT scan on my head to see if there was something going on in there.  I was beginning to think I had a tumor or something.  But no, things looked normal up there.  I still have the headaches and don't really know why -- do you think they are thyroid related?  Did yours stop when you got back on the Armour?

[croc]

   I have been on synthryoid for thirteen years and just recently began having bad headaches also. I went to have an MRI and brain wave this summer. Dr. said everything was fine. I still have the brittle nails, tired, twitching in the eye, dry skin and losing hair. The Dr. wanted to increase my level yesterday. My sister has been on Levoxyl for eight years and had none of these symptoms.  I would like to know why synthryoid is the major medication that everyone is usually started with.

[UndiagnosedHYPOthyroidallmyadultlife]

Here is what I've heard, straight from an intelligent and caring, thyroid disease educated, wise MD's mouth: $ynthroid is the med doctors prescribe because the pharmaceutical companies' have had a great influence on medical colleges ever since synthetic thyroid hormones were invented and the TSH test was invented (1973). Doctors were told in medical schools that Armour (natural thyroid hormone) is inconsistent, potent, dangerous, and old-outdated. They were told Synthroid is the "standard of care". And they were told that the TSH test (with it's ever shrinking ridiculous lab range-my words) is the "only" diagnostic test for thyroid disease.

100 years ago there may have been an inconsistency from batch to batch with Armour, but since it was regulated by the FDA, there have been no incidences of inconsistency with the natural thyroid hormones.

However, $ynthroid batches have been found to be inconsistent at least 3 times in the last 20 years and the FDA threatened to make them stop producing it each time.  

$ynthroid is T4 only. If your body doesn't convert T4 to the Free T3 and Free T4, you will overload on T4 very fast when you increase your dosage and you'll have bad symptoms. Armour has both T4 and T3.  Free T3 is the major biological hormone responsible for metabolism. IF you don't have enough Free T3, your hypO symptoms will take over.

My advice, from experience, is:  Don't risk your health and quality of life seeing a doctor who treats you by using the TSH test result as a guide, and who won't prescribe Armour/Naturethroid/Westhroid, and who won't order the Free T3 and Free T4 tests. Free T3 and Free T4 are the proper diagnostic tests for thyroid levels.

TSH is NOT a thyroid hormone. Recent clinical trials indicate that people (NOT taking thyroid hormone) have a TSH of 1.0. (Another recent trial proved Armour was much better than synthetics in overall health and brain function. Have most doctors heard or read about the results of these trials? No.)

That does NOT mean those of us taking thyroid hormone should have 1.0 TSH. The pituitary senses the hormone in your BLOOD and doesn't send that "thyroid stimulating hormone" to the thyroid - thus TSH is non-existent or suppressed when you are taking the correct amount of hormone for YOU. Makes good sense, doesn't it?
Everyone is different, but taking thyroid hormone by mouth renders the TSH test more than USELESS!  How you FEEL is what is important. Other hormones affect the TSH as well so TSH is NOT just thyroid related.  The TSH test has been flawed since its inception. In my opinion, the TSH test should be recalled like the dangerous medicines (Bextra, Vioxx, Zyprexa, etc.) have been. The TSH test is dangerous to our health and so are the doctors who rely on it as diagnostic.

$ynthroid nearly killed me. Isn't it more than stupid to give a person who has NO thyroid gland a T4 only medicine??? I know from how I felt that I had very little Free T3 for at least 6 years before my thyroid was removed. I had all the symptoms everyone mentioned here and more when I was taking $ynthroid. I never had any of those symptoms after I started taking Armour.

When my FT3 and FT4 levels finally got into the upper 1/3 of the lab range, I knew I was at the proper dose for ME (6 Grains-360mgs) because I felt great - symptoms gone! AND I increased my dosage MYSELF and I told my doctor I was going to do it that way! If I had waited for a doctor to tell me how I felt and to increase my dosage, I'd still be in HYPO (LALA SICK DEBILITATED PAINFUL) LAND.

$ynthroid will work for those who don't have the conversion problem (T4 to FT3 & FT4) and for those whose thyroid still produces T3. But when the conversion fails, if you're taking $ynthroid (T4 only), your body will be overloaded with Total T4 when you increase your dose, and you won't have enough Free T3 so you'll have hypO symptoms return on the same dose you've been taking.

(P.S. One of the docs I NEVER saw again (after we moved) nearly fainted when he saw my TSH of .01 (hehehe) and I don't even have a thyroid. Almost all my hypO symptoms were gone and I was starting to feel good. He told me to LOWER my Armour dosage or switch to Synthroid - HA!!!  Not a chance!)  

The Free T3 and Free T4 tests were invented several years ago.  You'll be lucky to find a doctor (or a lab) who knows these are the proper diagnostic tests.  The "new" lab range (.3-2.5 or 3.0---they can't make up their minds!) for TSH was reported in 2003 by the AACE but most doctors and labs haven't heard that YET.  There's no excuse for the poor and erroneous education doctors have gotten about thyroid disease - symptoms, testing, and treatment. Most doctors don't even recognize the symptoms of low thyroid because all they were taught was "TSH and $ynthroid".   The lack of proper endocrine education is harming millions of undiagnosed people.

I'd like to wish every doctor I've seen over the last 30 years (and the ones who think TSH is the only diagnostic test) a horrendous case of thyroid failure and the 130# weight gain that went along with mine, and the other debilitating illnesses it causes (too many to list here) and let them hear "Your TSH is "normal", for at least 15 years. Let them take those wonderful anti-depressants, pain pills, Zelnorm, Celebrex, etc.etc. and be talked down to about being overweight and "are you sure you're not a hypochondriac?", "eat less, exercise more" when all they really need is natural thyroid hormone!!! (Mental illness goes along with untreated thyroid disease, ya'll know that?)

It seems to me the only way they'll ever learn anything about thyroid disease, proper testing and treatment is if they have
it THEMSELVES!