arms huring once again

[CATHYZOM]

I have been hypothroid since my RAI treatment oct. of 04 due to
graves. I have been on levoxyl 100mcg since nov. 0f 04.  I have been feeling ok despite the weight gain, hair loss and acnes on my back (been to tons of drs. and nothing has helped), but recently I have been getting the muscle and joint pain in my arms back.  I use to have this pain before and my dr. said that PTU med. for hyperthyroid causes these pains but now I should not be getting these pains any longer. I am not able to hold my arms up for longer then 10 seconds if I need to blow dry my hair and everytime i move my arms both my elbows and upper arm areas hurt.  I saw my dr. yesterday and she said its not thyroid related.  I am sure it has something to do with my thyroid cause my sleep has also been effected I have been waking up at 4.a.m. for no reason and have to force my self back to sleep for as long as this pain has come back and also the hairloss nightmare is moving in slowly.  My recent blood tests are:
Free T4 1.54, TSH 0.44. I would appreciate any ideas to help me with my arms and muscle aches.  Thank you all very much.

[Mark Lupo, M.D.]

This may not be directly related to thyroid.  It would be unusual for muscle problems (myopathy) from PTU to last this long.  Would go to a rheumatologist and be tested for myopathies -- these can be auto-immune just like the Graves and sometimes Graves pts have more than one auto-immune problem.  

Regarding the hair loss - take vitamins with lutein, biotin, b-complex and zinc.  Also check iron levels.  The thyroid labs look good but every once in a while a patient may do better on combo t4/t3 treatment such as adding cytomel or switching to armour (I prefer the former usually) --- however, with the muscle symptoms -- seek a rheumatolgy evaluation and if that is negative perhaps a neurologic evaluation.

Good luck.

[CATHYZOM]

I have one more symptom to add to the above and that if feeling sluggish all day long for the last month and getting back to sleep once i take my kids to school has not helped.

[gassy]

I don't know alot about this disease however from what I've read your Free T4 is way too low. If I'm wrong please someone correct me.

[Ussie]

Do you have the lab range for that Ft4? I have weakness in my arms and hairloss when hyper or hypo.

[LowMac]

Hi Shannon, How have you been doing lately? On a recent post of yours, I saw that you are having symptom improvement but still having some of the joint pain.
BTW, JimLow and I have a lot in common, in fact, we have 'everything' in common.
It's good to type at you again.
God Bless You.

[Mark Lupo, M.D.]

the fT4 range is usually 0.8-1.8 -- so 1.54 is fine.

[LowMac]

Hi Shannon, I thought I would add that I was formerly JimLow. I was afraid you might not respond to me, as LowMac, thinking I was playing a game with you.
What happened was, my wife got us on higher speed internet service SBC because we were formerly on dial-up. After recent tests I got, showing a second elevated liver count, I wanted to be able to ask Dr. mark about it but had to re-register under my new e-mail address, to get notified by Med-Help. Anyway, "JimLow" was a nickname already taken, so I changed to LowMac, the name of my little fishing tackle corporation.
I was just being a little playful on the above post, to see if you could figure me out!
Ar1281a, has been corresponding by e-mail and knows all about this, so hope she'll come on again and we can communicate under headings etc...
Shannon, you, Ar and Christine01 and TNT all three have been such a blessing to me (others too). At times in a person's life, things happen that really impact and I'll always remember the help and support you all have given.
Jim

[nicobella]

wouldn't a tsh level of .44 or anything that low be hyper thyroid not hypo??
just wondering.
what are the normal range for tsh and t4. NOt free 4 just plain t4 levels?

[Mark Lupo, M.D.]

the TSH of 0.44 is fine -- I worry about hyper if it is <.2 for most patients -- depends on the lab.

[doodlebug1]

Cathy, I had the EXACT same thing. I'd take a shower and try to wash my long hair, only to have to CONSTANTLY drop my arms to rest them. The problem is that you are on a T4-only med. Your hair loss ALSO indicates that. Also, an uninformed doc will look at your TSH and state that it couldn't possibly be your thyroid since your TSH is almost SUPPRESSED. But you are an example of how the TSH is NOT a good measure of how your treatment is going, and being on a T4-only med is also your problem. I was on Synthroid and Levoxyl for 17 LOUSY years with the arm weakness, pains, hair loss, poor stamina, chronic low-grade depression......and constantly told it wasn't my thyroid since my TSH was great and I was being "treated". They were ALL wrong. I switched to natural thyroid hormones, also called Armour, and ALL the above went away. Additionally, once a person gets on a med like Armour, the TSH is USELESS. It's the free T3 that has meaning, NOT the TSH. Once I got my free T3 at the top of the range, PLUS being allowed to dose by symptoms (i.e. get rid of them), I felt great, and had a very suppressed TSH. But again, the TSH is NOT a good measure. It's how you FEEL.

[LowMac]

Since part of the reason for this forum is for learning, I would like to express something about the TSH debate. First let me say I sometimes (for lack of a better term), play dumb when I inquire about a subject on here, so that I get unprompted opinions and so I'm not leading an answer I might get, in the direction I want it to go. When I tell someone I agree with them, I may be speaking about a specific, not a blanket agreement on everything.
Second, I want to admit, the suggestion about suppressing TSH to almost undetectable levels before some patients get symptomatic relief, led me to finally experiment in this area, with my own medication, which I strongly and emphatically DISCOURAGE anyone from doing. I did so because of desperation for symptom relief of joint pain flare ups and fatigue spells. I do contract work requiring a lot of physical stamina and need a certain amount of wellness, to keep going. AMNYWAY, I very slowly increased my med, above that recommended by my Dr., until my TSH was almost undetectable. I did not have hyper/toxicity symptoms but experienced a severe, bone numbing fatigue, which means I likely was at edge of danger. My symptoms did not improve. I am now at the dosage originally recommended by my Dr., with TSH between 0.5 to 5.0.
My opinion is that "certain" people have pituitary response that is sluggish but not actually hypopituitarism. Their Free T-3 and other levels can be upper, but not top-normal and their TSH will already be suppressed to near undetectable level. The problem is, how can a Dr. assume someone is in this catagory, when the majority of people are not? This is why a standard is set that covers the majority of people. Most Endos, even the AACE, recommends a TSH between 1.0 & 2.0, so the goal of 0.5 to 1.0, is even more optimal. To narrow it even further, is simply too risky for the majority of people. Hyper-toxicity from over-treatment can actually be life-threatening and no-one should want to see that risk taken on wide scales but only with those individuals who have the slight pituitary abnormality, who need a little more attention. These people need repeat testing of their other hormone levels besides TSH. I think what happens is that someone who does get optimal symptom relief by symptomatic adjustment, rather than range cautions, believes their experience proves this goes for everyone and they are understandably very excited about it but in reality, the majority of people need a TSH low-normal cut-off range or can be at very serious risk.
Hope no-one is offended but I completely agree with Dr. Mark on this subject.

[Mark Lupo, M.D.]

Thanks JimLow (LowMac) -- you explain it very well -- I am concerned that if people ignore the TSH they will get into trouble -- I have seen strokes and heart attacks in patients who titrate armour and t3 (and synthroid for that matter) based on symptoms rather than TSH.

[PNWBabe]

"Thanks JimLow (LowMac) -- you explain it very well -- I am concerned that if people ignore the TSH they will get into trouble -- I have seen strokes and heart attacks in patients who titrate armour and t3 (and synthroid for that matter) based on symptoms rather than TSH."

Were these people YOU actually saw have strokes or have heart attacks or were these studies you have read? If they are studies, would you mind posting the links where we can read them?

Thank you

[LowMac]

First, I appreciate you and Doodlebug1, for your sincere desire to see people helped and recieve optimal treatment. I know this is not put-on and that you are genuine about this.
Yes, I am on 120mg (2-grains) Armour (nearly three years). I was first placed on Synthroid three years ago and my Dr. switched me to Armour for concern I was one of those patients who have problems with T-4 to T-3 conversion. As far as my having been on that dose I described earlier that suppressed my TSH to 0.006, I was on that dose for SEVERAL MONTHS. My intermitant joint and fatigue symptoms did not improve but the fatigue worsened dramatically after I had been on the dose about three months. As far as heart problems at hyperthyroid levels (hyperthyroid is used innerchangably with hormone-toxicity) and many other serious problems it can cause, I'll give you a first hand example. My Uncle had Graves Disease and became hyperthyroid, it was not treated for too long of a period and in addition to dramatic weight loss, he developed a heart anurism (corrected by surgery) and also had a stroke. The reason Dr.s equate thyroid hormone toxicity (also called thyrotoxicosis), with hyperthyroidism, is because it has the IDENTICLE same effects.
As you said in your post that individuality of patients needs considered, I agree, which is why symptomatic treatment, without TSH testing cannot be safe for every patient. One reason is because with some people, the line between toxicosis and being asymptomatic can be a very fine/thin line.
Also, my remaining symptoms are almost certainly not thyroid related. Do you remember in Mary Shomon's book "Living Well With Autoimmune Disease", she states that with her thyroid med. optimized, she had lingering symptoms and was also diagnosed with CFS/Fibromyalgia. To this day, she takes low-dose antibiotics to relieve her joint pain and on her Thyroid-Info website she stated in an article, that at one time she went off the antibiotics and the joint pain/fatigue returned. My opinion is that a well treated thyroid condition can still have comorbid conditions existing with it (as you said 25% can get other AI diseases). My belief is that there are subtle viral infections, allergies etc... that can cause symptoms as a seperate entity-illness. I have low cortisol levels but not Addison's Disease. In fact Dr. Mark, I just had a result again of 1.7 with range being 3 to 8 ng/ml. Not only does thyroid hormone not treat low adrenal, it can lower cortisol even further, which means it is seperate issue. ALL THINGS cannot be linked to thyroid but I certainly believe thyroid patients need to be optimized to the best possible levels, that also do not put them at risk. Thyro-toxicosis from over-replacement is a genuine possibility. As far as "have I heard of people going HYPER from overreplacement"? I have seen people's testimonies of this many, many times on websites and other message boards.
Sorry so long but hope this added to the balance!

[ArmourGal]

One other clarification.  I did not recommend NOT testing.  I did recommend not to dose by the TSH..but rather the Free levels, once someone is on oral thyroid hormone replacement.

[Artylady]

How does one understand how TSH, T3, T4, free Twhatever, all work when the disease is making it almost impossible to read and comprehend?  It's frustrating.  I want to help myself either naturally or to find a doctor who will treat properly.  Can anyone put it ultra-simply so that I don't have to read a vast amount of information to cull the simple facts?
I've been hypothyroid (hashimotos) for probably 12 years.  I do not feel as good as I believe I should...taking Synthroid .88.  I am tired, achy, brain-fogged, spacey, and wonder if I am depressed.  I read things on the internet that indicate I don't have to feel this way, but how do I get there?

[doodlebug1]

Hi!! Just found your post here, too. I see you ARE on meds. It looks like you are due for a raise in your Synthroid! What you are describing sounds just like UNDERtreated hypothyroid. Also, you might want to ask your doc for a FERRITIN test. Many hypo folks have discovered that they have miserably low Ferritin, which is storage iron, and they need to bring it up. We don't yet know exactly what this is happening, but it is.

And one more thing--there are LOTS of us out here who used to be on Synthroid, and because docs feel like it's a wonderful med, and because they hold you in the TSH range, you will tend to never rid yourself of all hypo symptoms. I was on it for 17 MISERABLE years--never, ever totally released from hypo symptoms. It's only when I switched to Armour, which is natural dessicated pig thyroid, and was allowed to dose by symptoms and not the TSH, did ALL my symptoms of hypo cease. It was a major turnaround for me. Armour gives you exactly what your own thyroid gives you--T4, T3, T2, T1 and calcitonin. What a BETTER way to help a person than that!! Hang in there!

[doodlebug1]

Hi LowMac. I think there is a misunderstanding about the discussion concerning a suppressed TSH. I, for one, did not purposely try to suppress my TSH, nor would I recommend it to folks!! You are so right.

What happened to me is two-fold. First, switching to a prescription natural dessicated pig thyroid totally changed my life around. I've also noticed that LOTS of folks out there are making that switch and noticing the same life-changing results.

Second, I raised my meds slowly and decisively, according to SYMPTOMS (i.e. the removal of hypo symptoms). I also watched my free T3, because I had read that folks generally find it at the top of the range when they finally rid themselves of symptoms. Once I felt I had rid myself of ALL symptoms, the same ones I had on T4-only meds, I decided to do labs. THAT is when I discovered my TSH was .009. And I am not hyper in the least.

I also did some research on the TSH at this point, and learned what a POOR method it is to dose someone. There is growing articles out there about this. And, I have NOT seen it to be a great risk for folks, either. I am in a group of over 1300 folks, and I've not yet seen anyone get "hyper-toxicity" from trying to find their optimal dose--one that ended up making their TSH as low as mine, and LOWER. But again, they were NOT dosing by the TSH--in fact, some of the members are adamently against it. LOL. They were simply dosing to rid themselves of symptoms.

In your case, I don't doubt you have more going on. Like you said, you could have Hep C. to deal with.

In summary, from my experience, I have learned that T4-meds are not doing the job for MOST folks, and that going solely by the TSH, without giving credence to symptoms, temps, and the free T3 and free T4, is not a good way to help folks.

[LowMac]

Hi, If I may, let me add a little info about hormone levels, that I hope helps in your understanding.
"TSH" is actually a pituitary hormone (pituitary brain-gland, sends messenger-hormones), sent to the thyroid to regulate its hormone levels of T-4 & T-3. When these two are low/begin to drop, TSH becomes elevated (hypothyroidism). Adversly, when these two homones (T-4 & T-3) get too high, TSH decreases to below normal (hyperthyroidism). TSH fluctuates constantly but should only do so, within a fairly narrow range. The range for TSH is 0.3 to 3.0. This standard, eveloved from a slightly broader range, due to the fact that 95% of the healthy population has a TSH in that range (usually 2.5 and below).
Vast studies from many years, have shown that in MOST ("most", not all) people, TSH does reflect where a person's T-4 & T-3 (total & free) levels are.
Many Dr.s agree that the single best thyroid hormone to check, is the "Free T-3", along with TSH because it measures the free, unbound hormone available to enter receptors, in the blood for regulating our metabolism. T-3 is the more active hormone. T-4 is more of a reserve hormone, that converts into the more needed T-3. Some hypo patients, take T-4 only and works well for them. Others need both hormones, due to inadequate conversion. Both Synthetic and Natural brands of thyroid homone, come in T-4 only and T-4/T-3 combos. I take natural T-4/T-3 combo, "Armour", the synthetic equivelant being "Thyrolar". Some people take the T-4 & T-3 seperately for example Synthroid (T-4), plus Cytomel (T-3).
It will simplify things for you, by just looking at your lab result sheets, seeing what your result is, then comparing it to to the lab's normal range that will also be listed on the test.
Ask for copies of all your lab results each time, they are obliged by law to give them.
I hope this helped some,
Jim

[LowMac]

Hi, thanks for your above post, I do understand what you are saying and I know the goal is not actually to suppress TSH but I believe we have sometimes a problem with samantics/wording. One way of looking at this is to say; "TSH is not a thyroid hormone, it only stimulates the thyroid to produce/disburse it's own hormones when needed or backs off if the thyroid is stimulated enough and so it is not TSH itself that causes hypo or hyper thyroid conditions".
Here's another explanation that helps in this area; Once a hypo patient reaches close to optimal levels on their thyroid hormones, especially Free T-3 (upper half, even top of normal), as was in my case, and the TSH is at lower normal (mine was 0.45, with Free T-3 at near top-normal), a Dr. knows that he can then drop the other hormones off future blood tests and use the TSH only because it is highly sensitive and a mechanism of our own bodies, that monitors thyroid levels. If he sees a significant fluctuation in TSH, for example it goes up to 1.5 or 2.0, he would likely increase the thyroid med, to get the TSH back down to about 0.5. Over time, many Hashimoto's patients experience this very senario.
For a Dr. to keep increasing the hormones, even after seeing ranges at already optimal range, because a patient has lingering symptoms, would be too risky, instead, they would begin to test for other causes of symptoms.
It may very well be true that some people's TSH will over-react to thyroid hormone replacement medication at certain times of the day, after administering it but most people keep fairly steady levels. I once took two TSH tests, only one week apart. One at my Doc's office, the other was a Bio-Safe home test. The Doc's lab's reading was .45 (as mentioned above) the other test result was .49! This confirmed the accuracy of TSH testing for me. I do believe however, that Dr.s do need to test all hormones at first before going to TSH only for follow-ups.
I believe Dr.Mark's concern over people risking toxicity is wisdom and sincere and I believe he should be respected for that view.
Thanks again, all opinions are valuable and sometimes there is a degree of truth on both sides.
Jim

[doodlebug1]

Hi Jim. Great post. I have been reading and thinking about what you said, and I think I see where a problem lies. You wrote: "For a Dr. to keep increasing the hormones, even after seeing ranges at already optimal range, because a patient has lingering symptoms, would be too risky, instead, they would begin to test for other causes of symptoms." The problem revolves around your idea that there are great "risks". Granted, if a person already has underlying heart issues, increasing dessicated thyroid treatment, with it's direct T3, "can" be risk. But for the vast majority of folks on thyroid treatment, Jim, there is no underlying heart issue.

And the fact that docs "begin to test for other symptoms" is the reason that SO many folks are left hanging with UNDERtreated hypo symptoms. I don't think they "begin to test for other symptoms" because they are worried about a "risk" with increasing their meds. Instead, I note that docs believe hook, line and sinker what they are taught in medical school about the TSH!!! Namely, they see the TSH as an infallible, totally-reliable dosing tool, and they use it TO THE EXCLUSION of "clinical evidence, symptoms and medical observation"!! i.e. ABOVE and BEYOND the OBVIOUS symptoms that a patient screams with!!

In fact, Jim, the real risk is IN that cow-following-cow over-reliance in the TSH. Because SO many folks who are left in the "range" with continuing hypo symptoms are AT RISK for further disease and problems due to undertreatment!! I AM ONE! I had an ideal TSH, and I kept getting sicker...and sicker...and sicker....

Some docs will create fear in their patients by claiming that a suppressed TSH will cause osteoporosis, a fear also called "osteophobia" by one doc. BUT....there is also growing documentation out there that to the contrary, optimally treating a patient is REVERSING bone loss (Dommisse in Arizona). That optimal treatment is with natural thyroid hormones, also.

And by the way, over-reliance on a faulty, man-made TSH range can cause the doc to miss a pituitary disease! Sure, the TSH is "sensitive" but does that mean it's "reliable"??

Also Jim, there are many folks who go into a doc's office with obvious hypo symptoms, and their TSH is lagging behind in it's "sensitivity" to detect it (i.e. it's "normal"), so they are sent home with antidepressants...and they suffer longer "until" their TSH "shows" it. If the doc had tested the free T3, the hypo might have been discovered far sooner.

So......Jim...perhaps the TSH is NOT an infallible and reliable tool at all!! Just my two cents, but based on the body of articles that are appearing on the net with the same message, it appears to be the two cents of MANY OTHER FOLKS as well! :o)

[sicntired]

Hi
I have been hypothyroid for 20 years on Synthroid.Just recently tried Armour but felt too ill and went back to synthroid I have cfs/chronic fatigue and low ferritin. recently I have tried to add cytomel to the mix, and developed hair loss and muscle weakness. I notice I have particular difficulty when climbing stairs and as I reach the top step I feel the muscle burn and feel weak and tired. I also have a percewived weakness of my arms and my legs seem to have atrophied somewhat. MY doc has sent me for an MRI fearing MS or Lou Gehrigs disease. I await results. Even my chewing muscles seem to fatigue easily Has anyone else had these muscle problems? My tsh is very suppressed and t3 at the upper level of normal. I think I am hyper thyroid now so I have switched back to synthroid 125 mcg. I have pain in every muscle and knots galore. I just started taking iron supplements but I read you have to take them at least six hours after thyroid hormone or it wont be absorbed.
I am too sick to work.
HELP

[ArmourGal]

you're a smart fella..i think if you do some additional reading, you'll gain a better understanding of the opinion that dosing by the TSH might harm some folks.  Not all folks, but some folks.

You might want to start with Dr. Lowe's paper on this:
http://www.drlowe.com/frf/t4replacement/intro.htm

I would be one who would be hurt TSH dosing.  Because i was undiagnosed for such a long time, I evidently am thyroid resistant.  Doses that might cause someone else to be hyper cause no hyperthyroidism symptoms in me.  None. Some call this cellular resistance.  Remember, Free labs measure what is in the blood, not in the tissues.

You might also be interested in Dr. Peatfield's (great UK thyroid doctor)approach to thyroid defiency:
http://www.hypomaarniethappy.nl/Suggestions%20for%20an%20approach%20to%20the%20management%20of%20thyroid%20disease.htm

He describes what I have here:
Resistance to the passage of T3 via the receptors has been seen in a number of cases. Why this occurs is not clear, but long periods of thyroid dysfunction are associated. The replacement dose of the chosen thyroid hormone has to be much larger than usual, which may cause some heart searching. Deficiency results from a protracted low thyroid state; prolonged low levels de-sensitizes the receptors. This will improve with time, and treatment of any Adrenal insufficiency present.

That's why I think it important that folks know that sometimes dosing by the TSH may keep them hypothyroid.  And since the TSH apparently is missing many cases of hypothyroidism (I see dozens on my thyroid forum), more cases of "resistance" may occur as well as adrenal dysfunction because of long standing hypothyroidism.  

So it is my opinion that it is beneficial to all to know that there are other medical opinions on the treatment of hypothyroidism other than "dose until TSH is in range with a T4 medication).  This may work satisfactory for some for a period of time, but the evidence is indisputable that it does not work for all.  

Hope these references are helpful.

[LowMac]

Thanks for the compliment, you're smart gals too! I believe what has happened here, is a misunderstanding, just as you said in earlier posts. I decribed Dr.'s need to test with thyroid panels first, before going to TSH only, especially the Free T-3. If you look through archives of this forum (JimLow), I have been a "free T-3" advocate, from the beginning. As I said in above post, if a Doc sees the hormones themselves, are at upper to top normal, with a TSH also at optimal, that means the TSH/other hormone ratio with such patients, is reliable and is the case with MOST people. Others as you described with slightly abnormal pituitary function, would need T-3 tested every time, since TSH could not be relied on.
I mentioned TSH isn't what makes one hyper or hypo and here again, is a samantics problem. An overactive pituitary (tumor etc..), will send too much TSH, even when thyroid hormones are already borderline high, causeing hyperthyroidism. Even though it's the TSH doing this, Docs don't call it TSHism but hyperpituitarism, so it is the TSH but then again it's not!
I think this is kind of what we're looking at on this other subject "the TSH is reliable, but then again it's not". It depends on a person's individual situstion. Did you read the ppost above this one by "Sicntired"? Note that he went hyper on Armour and note the hyper symptoms he describes when suppressing his TSH to way below normal range.
Dr.s have a delimma, they have to assume TSH is a reliable indicator with most patients for the reason described above by Sicntired. Other people needing higher than normal dosing due to poor absorption/utilization, I suppose would have to somehow be discovered along the way. If a Doc assumes everyone, is has malabsorption problems, the liability possibilities of overtreatment become too risky. If a patient suspects they are a patient with these extra needs for hormone, they should discuss this with their Dr.s and ask him to include the other hormone levels on follow up tests each time, in addition to TSH. If the hormones are top-optimal and TSH is low-optimal, I can't imagine a Dr. saying "let's go ahead and get those levels way above normal and see what happens". Please understand, I'm not being sarcastic, I'm trying to put myself/ourselves in the Dr.s place, from his viewpoint. As far as Dr. Lowe, Shames, Mary Shomon, etc, etc..., I have read them all expensively and have referred others to their articles myself. I do know all I've read Mary Shomon state about TSH, is that most people feel better at between 0.5 to 1.0. She may include articles from time to time, including other opinions, to throw into the balance but generally, she agrees with the current TSH standard. I'll say it again, there is truth on both sides of this issue, I sincerely believe that but much of it has to do with individual issues with patients. I appreciate you ladies research and have gotten some good things out of it.
Jim

[ArmourGal]

Ah - yes, we are getting on the same page a bit.
Especially when you say TSH is reliable, but not.  
Yes, that is the dilemma.  And especially if you're the person for whom it is not reliable...and you spend 10-20 years of your life wondering what is wrong with you and why you have so many health problems before your TSH finally manages to rise high enough for the docs to believe you that you have a thyroid problem.

I have been active on a thyroid forum for over a year..very active...and I know how any times it is NOT reliable for a person - and I've seen the lives that test has destroyed, including my own for many years. So..is it Really reliable if it's not picking up every case of hypo?  I say NO. Because that is what the docs are relying on..and it's not working for a huge number of folks.  And that's just the folks I have heard about..how many are out there suffering that don't know to get to the Internet and check it out.  

I do say you have to do what you said - Free T3.  And especially antibodies.  But do you have any idea how hard it is for most folks to get their doc to run those tests if the TSH is NORMAL?  Near impossible.  And so, there is a problem with thyroid diagnosis in this country imo.

And because of the HUGE pharmaceutical influence in this country over doctors, it is the synthetics that get pushed.  And I would imagine with the usual perks.  That doesn't mean, however, that there isn't another alternative product out there that is just as good, if not better.  

I'm enjoyed our exchange of ideas.  I am always glad to see that a thyroid patient has researched their condition and is knowledgeable.

[LowMac]

Thanks ArmourGal,
I went through the problem of a Dr. saying my TSH of "8.3" (lab range was 0.5 to 4.82) and my T-3 Uptake being flagged low, only meant "sub-clinical" hypothyroidism. Just before going to this Doc for tests, my previous one said I had Generalized Anxiety Disorder and prescribed me Paxil, Xanax and Atenolol. I went to the new Doc because after asking that first one "Could this be my thyroid?", she would not request tests for me. When I did get tests, after persistance and changing Docs, the above results were revealed. I'm glad I demanded copies because they were not going to give me ones and actually lost them at one point. They also lost my DR.s reveiw of my labs, in which he responded; "Your test indicates you are low on thyroid hormone.", and he moved away to become a missionary Doctor. When I called the hospital to finally get the letter and tests tracked dowm they said "there's nothing of concern on the test other than your glucose was borderline high." I told them I wanted the documents anyway and saw that there was a problem on them. After this, I went to a third Doc and asked him if I should get tested for antibodies. He said it wasn't needed but I finally got them done, two years later, results; TG ABs "537" and TPO ABs "84".
All during this, each and every Doc, including two more I went to as time went by, wanted to prescribe antidepressants because I quit taking those originally prescribed after only a couple months. I totally agree their is an abuse of antidepressant prescribing! I know MANY people who've been prescribed them that did not need them! They had underlying conditions needing treatment, such as thyroid and diabetes. Some had severely adverse affects from the SSRI Antidepressants.
The point being, to put it straightforwardly, there are Dr.s out there, who are just plain LOUSY. I do believe however, that there are wonderful ones too. My mom has one of the great ones! I believe Dr. Mark is one of those too. He is volunteering his time for one thing but also comes across as very well studied (far more knowlegable than this layperson!). I can't say that about other ones I've had experience with.
This issue is like the other one we've been talking about. Patients need to evaluate not only their treatment, but their Dr. too! I get disappointed in Dr.s who defend other Dr.s, simply due to being in the same field, if they are not good ones, it's better to remain silent. Peoples lives and health are too important to be treated with half-baked care. I hope all of us will show appreciation for Dr. Mark from time to time. Just like all patients can't be lumped into same catagory, niether can Dr.s. Praise God!, for the good ones!!
Jim

[doodlebug1]

Hi Sicntired! Your nickname says it all. I've sure been there! In my opinion, if a person has problems with Armour, there are usually three reasons--one, their Ferritin is too low, which keeps the thyroid hormones in the blood and not distributed. Also, low Ferritin has symptoms which mimic hypothyroid!! I had low Ferritin. I got up to 2 grains and started having issues. I then corrected my Ferritin--my doc wanted to see it close to 70--mine was in the low teens!! It was AWFUL. I had to take high doses of iron to even begin to get mine up. I also added Vitamin E, since I was taking Ferrous Sulfate, and that depletes Vit. E

Second, a problem with Armour can occur when a person has sluggish adrenals. I never did, but SO many folks do. When you have sluggish adrenals, you don't produce enough cortisol, and cortisol is needed to distribute thyroid hormones to the cells. To find out, people do the 24 hour adrenal saliva test. Unfortunately, most docs are not familiar with this, and tend to do a one-time blood test, which can MISS it. When sluggish adrenals are verified, folks get on low-dose cortisol--usually no more than 20 mgs, and then the Armour can get into the cells.

Three, in my opinion a problem with Armour occurs when a doc leaves a patient on a low introductory dose of Armour TOO LONG. I've noticed that folks need to start raising from their introductory dose within 1-2 weeks, and slowly keep raising. Otherwise, the hypo can return with a vengeance! My first doc kept me on 3/4 grains for NINE WEEKS. I became absolutely miserable. It was later than I learned that I needed to raise MUCH sooner to prevent the hypo from returning.

You mentioned that you have CFS. Did you know there is literature out there which explains that most CFS is simply untreated, or UNDERTREATED hypo?? In fact, I read that when the TSH was created, which was in 1975, with it's range, only THEN did there start appearing this "new" disease called CFS. Only later did some intelligent docs figure out that CFS is what I mentioned above!

You mentioned adding Cytomel to the mix. I've known a few folks who were trying Cytomel, and when they switched to Armour, they thought the results were far superior--possibly the mix of T4, T3, T2, T1 and calcitonin......

When you said your doc fears MS or Lou Gehrigs disease, that sounded SO familiar. My docs one thought I had a strange Mitochondrial Disease, or they thought I had a form of Glycogen Storage Disease, or even MS. It was only later that I figured out ON MY OWN, that my problem was being on T4-only meds. When I switched to Armour, and was allowed to dose by SYMPTOMS and not the TSH, ALL THOSE CRAZY SYMPTOMS DISAPPEARED.

So, this is all opinion, but it is also my experience. And there appears to be thousands like me out there who are finding the same experience.  Hope that helps. There IS hope, dear sicntired. :o)

[Mark Lupo, M.D.]

Okay - unfortunately the non-MD's are missing the fact that you have sympotoms that are likely NOT related to an Armour Thyroid deficiency.  You are describing a myopathy (muscle disease) - I would check CPK (muscle enzyme) as well ESR (marker of inflamation (inflammation)) -- alternatively this could be a neurological illness and I am glad that the MRI was ordered.  Keep us posted and persevere in the efforts to find a diagnosis.

[sicntired]

Hi All BTW I am a she...I Didn't make it clear.. sorry.
Thanks so much for the advice. I will see about my adrenals. I need a good endocrinologist who TOTALLY understands about Hypothyroid/fibro/cfs/ pcos axis in the NY area. Has anyone had good experience?
To add to the mix I have just been told I have insulin resistance with an insulin level of 17. My blood sugars tested normal. As for the low ferritin mine was 12. I have started taking slow fe.. is one pill enough? Is this a life long replacement as is the thyroid hormone??
I am definitely going to ask about the cortisol saliva test. I really need a good doc who is plugged in.
Please send names/ numbers if possible.
MAny Thanks
sicntired.

[ArmourGal]

Well now for sure we're on the same page.  
I took anti-anxiety meds for 10 years...and all the time it was my thyroid.  Two weeks after I started desiccated thyroid extract, I realized I didn't need the psychotrophic meds anymore and just stopped them.  But I got curious, and so one of the big areas of thyroid research I have done is in regards to psychiatric symptoms of hypo.  I am shocked that this is being missed by so many physicians since it is well documented in the literature.  Yet all sorts of anti-depressants and other drugs given instead of correcting thyroid hormone levels in so many cases. I've been fortunate to be able to help some people get the correct diagnosis on this.  It sure can change lives.

Without telling the whole story, let's just say this I am passionate about this issue because my mother was a suicide who autopsy indicated undiagnosed Hashimoto's.  I didn't realize that until 10 years after her death even though I asked several doctors what those abnormal thyroid findings indicated.  They would just look at me with blank stares.  She also had adrenal hyperplasia. So I think one problem is that physicians just are unfamiliar with this Hashimoto's Disease.  

So - where was I?  Let's just say it is heartening to see others know about this.  Spread the word all you can.  Too many people are being given dangerous drugs when all they need is more thyroid hormone.  

Here are two great articles you may not have come across on this subject:
http://www.psychiatrist.com/pcc/pccpdf/v05n06/v05n0603.pdf
http://www.drrichardhall.com/Articles/hashimoto.pdf

i'm glad you finally got diagnosed.  If my TSH had actually made it to 8, I would have been too dead to know I think.  I have a long list of ailments that have all been cured by thyroid hormone.  So many wrong diagnoses like IBS, asthma, CFS, carpel tunnel...and so many painful other things like neck and shoulder pain and terrible muscle aches.  I could write a book.  But i'm grateful it's over. But I work diligently to make sure it doesn't happen to others.

[sicntired]

Hi and thanks for your note. Could my myopathy be related to the fact that my tsh is so supressed that I actually may be hyperthyroid now? I was once told that tongue fasiculations were a sign of dose related hyperthyroidism.I have this now!  When I was diagnosed many years ago,I was so hypo that my cpk was 1074 and I could barely walk so I know You can definitly have muscle problems if you are hyper or hypo in my expereince but I was concerned when my rheumatologist recommended the mri. I have no visual symptoms. not falling......Could this be early ALS? That is the scariest disease on the planet.
My cfs/ fibro started after pregnancy and a horrible flu like illness.
What vitimans do you recommend?
Thanks.

[Mark Lupo, M.D.]

The slo-iron should be temporary -- not uncommon for a menstruating woman to be iron deficient.  The thyroid is likely long-term.  The insulin is in the high-normal range - may be PCOS - especially in the setting of irregular periods and unwanted hair growth.

The adrenals can be tested - the only validated salivary cortisol is a midnight salivary cortisol ---  if this is elevated it MAY suggest over-production of cortisol.

[ArmourGal]

certainly she could have a muscle disease, but in my own hypo experience, I had the same symptoms.  My weakness was so great that my i couldn't even pull the trash bag out of the kitchen can to change it nor could I lift a a gallon of milk out of the refrigerator.  Muscle weakness is definitely a hypo symptom.  Twice, I received an erroneous diagnosis of costochrondritis which I now now was just a hypo problem in my rib cage from everything so being so abnormal from hypothyroidism.  Neck and shoulder and joint pain can be severe in hypo.  So I'm not disagreeing with your comment, but these things certainly can be related to a thyroid hormone deficiency.
Cindi

[doodlebug1]

Whoa! A ferritin of 12 was also like me, and I had terrible symptoms, too. That could explain a lot of your issues, perhaps. I don't know about Slow-Fe--I've heard it's good, though. But for me, I had to take 2-3 325 mg. Ferrous Sulfate daily with food for a few months to get my Ferritin up. I took Vit E with Ferrous Sulfate since Ferrous Sulfate depletes it, I've read. When I got up into the 50's, I felt a LOT better. I now try to keep it at least 70 by the recommendation of my great doc.

And again, I was told that I had muscle disease, too. Yes, you could and I hope you find out. But I also wanted you to hear that someone who was also definitively told they had a muscle disease, didn't. So whatever you find out, one way or the other, we are behind you all the way!! :o)

[Mark Lupo, M.D.]

Muscle symptoms could be thyroid - but the description is a little more severe -- unless the levels are significantly abnormal (which I would hope not to be the case in someone recognized to have a thyroid problem and is already on treatment).  The elevated CPK in the past is seen in hypothyroidism (not hyper) - it also may mean that you have an underlying muscle disease that was aggravate by the hypothyroid.  If your TSH is in a reasonable (even somewhat low) range now then I doubt the thyroid is the culprit.  

Does not necessarily sound like MS or ALS, more like a myopathy such as polymyalgia rheumatica (PMR).

Good luck.

[LowMac]

Hi, I hope you did not mind my using your post as a reference in my discussion with other posters, about toxicity and TSH. I did not mean to appear to be ignoring you but knew you would be getting a response from Dr. Mark. I'm trying to limit posting, to discussions with other forum members, also wanting to discuss. I feel patient questions should be answered by the Dr., then forum members can add-on afterward, if they feel they have something that might help.
Best Wishes.

[sicntired]

I really do appreciate all your comments. I am hopeful that once I get my ferritin level up, I can try Armour again. What exactly are the symptoms of low cortisol? I was told mine was low normal. This could be contributing to my muscle symptoms. My sed rate was normal so I doubt it is a myositis. My muscles fatigue easily and I particularly notice proximal muscle weakness especially when climbing stairs. Could this be related to cortisol or iron deficency?
I also get short of breath on very mild exertion. I am so hopeful I can get to the place many of you are... enjoying life again. I have been suffering way too long. I also have lymph node swelling and parotid gland hypertrophy. I should will my body to science someday so they can figure this puzzle out. I need a good doc who understands this dilema in NYC or PA  if anyone knows one.
THANKS
sicntired