Please post the reference ranges with all of your tests.
Also you say you don't feel well. What symptoms are you having?
it appears your Dr my be going off of ONLY the TSH. Dr's have a belife (FALSE belief but they have it none the less) that the perfect balance is a TSH between 1 and 2. And since your latest test puts your TSH at 1.6 lyour Dr is perfectly happy to keep you feeling like crap!
Thanks for you comments.
The ranges for my tests are as follows:
Synthroid 94 mcg
Free t4 (Range 0.7 - 1.8) - 1.0
Free t3 (Range 2.3 - 4.2) - 2.92
TSH (Range 0.32 - 5.5) - 3.3
60 mg Armour - 6 wks
Free t4 (Range 0.7 - 1.8) - 0.7
Free t3 (Range 2.3 - 4.2) - 3.26
TSH (Range 0.32 - 5.5) - 1.671
swollen face & tongue
Pain in ankle joints (this has always been my cue that the dosage is low)
Fatigue (better but still have energy drop after 2pm)
freezing cold feet & hands
I need clear, documented arguments to present to my Dr. in an effort to get my dosage increased (if that's really what I need).
I'm clearly fighting an uphill battle w/ my doctor - but also understand her limitations due to the corporate structure of Kaiser. For example, when I questioned why she was not following Armour directions, she referred me to the Kaiser clinical pharmacist. This is what she wrote me:
We follow the recommendations by the Endocrine Society which recommends that TSH levels should be drawn 4-6 weeks following medication adjustment as it takes T4 at least 4 weeks to reach a steady state (consistent level) in your body and cause TSH to remain more stable. T3, which is part of Armour thyroid, has 1) a very short half life (in and out of your body very quickly) and 2) is poorly absorbed by your your system. Therefore, we rely on the T4 or the active component of replacement to accurately convey the TSH level. T4 monitoring typically does not provide additional information that is helpful in managing the disease. Additionally, the Endocrine Society only recommends monitoring of TSH levels due to the issues I described above.
Any help on how to best approach my doctor would be helpful. I know what I really need is a new doctor, but I so far have not been able to find one within the local Kaiser system. I'm still looking though!
if you are stuck with your current doctor for now, then perhaps you should try to educate your doctor about hypothyroidism and see if you can persuade to do what you need. Following is a letter I wrote for another member with similar issues to give to her doctor. I have also listed attachments that I suggest that you copy and attach so the doctor can read them without having to go to the internet. See what you think about using all this with your own doctor. I had to split into two posts because it exceeded the allowable limit for a single post here.
Dear Dr. ___________
I am sending you this letter in hopes you will take time to read and prepare to discuss with me at next opportunity. I am writing because I still suffer with numerous hypothyroid symptoms, even though my TSH and Free T3 and T4 are within their reference ranges, and you have declined to increase my thyroid meds. I have spent considerable time searching and reading related information and discussing all of it with an experienced and knowledgeable friend. I have learned a great deal, which leads me here.
First, the "Immaculate TSH Belief' is a big problem for hypo patients. Until this test was invented about 40 years ago, hypo patients were routinely treated clinically. One of the many places this is discussed is in this interview with Dr. Derry, which you will find revealing.
Next is the assumption that TSH accurately reflects levels of the actual thyroid hormones. In actuality, TSH cannot be shown to correlate well with either Free T3 or Free T4, much less with symptoms, which should be most important. The following link is graphical presentation that shows the best correlation of TSH to Free T4 and Free T3 I have ever found, and it is very clear that the correlation of TSH to Free T4 is poor, and even worse with Free T3.
In fact, scientific studies such as the following, have shown that hypo symptoms correlated best with Free T3, while Free T4 and TSH did not correlate at all.
Next is that TSH is even less useful as a diagnostic by which to medicate a hypo patient when already taking thyroid meds. This link from the British Medical Journal and quote confirm that position.
"To establish their role in monitoring patients receiving thyroxine replacement biochemical tests of thyroid function were performed in 148 hypothyroid patients studied prospectively. Measurements of serum concentrations of total thyroxine, analogue free thyroxine, total triiodothyronine, analogue free triiodothyronine, and thyroid stimulating hormone, made with a sensitive immunoradiometric assay, did not, except in patients with gross abnormalities, distinguish euthyroid patients from those who were receiving inadequate or excessive replacement. These measurements are therefore of little, if any, value in monitoring patients receiving thyroxine replacement."
Further, from the full pdf of this study, further evidence that suppressed TSH is frequently experienced when taking adequate dosage of thyroid meds. "When FT4 levels were normal, however, TSH levels were normal in only 51.5% and abnormal in 48.5%. We also examined the possibility that FT4 levels may remain within normal range when TSH is suppressed during L-thyroxine treatment for goitre or cancer. FT4 and TSH were measured in 45 patients on L-thyroxine as TSH suppression treatment. TSH was suppressed in 23 patients (51.1%), normal in 20 (44.4%) and elevated in 2 (4.5%). When TSH was suppressed, FT4 was elevated in 30.4% but normal in 69.6% of patients."
The next big issue is reference ranges. Even though my test results fell within the bottom end of their ranges, from my personal experience, and what I have learned, that clearly does not mean those levels are adequate to relieve symptoms. The ranges are far too broad because the ranges were erroneously established. The ranges were established based on all patient data for which test results were available. Then assumptions were made that about 2.5% of patients were hypothyroid and about 2.5 % were hyper, and reference range limits were established at those points. About 10 years ago, the AACE finally acknowledged there are many, many more than 2.5 % hypo and hyper. After purging the data base and recalculating the range limits, they made a huge change to the TSH range from .5 - 5.0, down to 3 - 3.0. Unfortunately TSH is a poor diagnostic, as discussed above, so this change didn't help hypo patients very much. Plus most labs and doctors continue to use the old range, even after 10 years. The biggest impact from the acknowledgement that the TSH range was wrong, is that the ranges for Free T3 and Free T4 were established the same way as TSH. Thus, it is extremely unfortunate that the ranges for Free T3 and Free T4 have never been corrected like done for TSH.
If the data bases for Free T3 and Free T4 were purged of suspect patient test data, as done for TSH, the new ranges would be more like the upper half of the current ranges. This clarifies why so many hypo patients with Free T3 and Free T4 in the low end of their ranges are still symptomatic. There is some good info in this link. Note the statement, "The Free T3 optimal range being above the midpoint is corroborated by three different sources.", and the references to scientific studies.
Further important scientific evidence that reference ranges are flawed is shown in the following quote from the link provided.
"High individuality causes laboratory reference ranges to be insensitive to changes in test results that are significant for the individual.
The width of the individual 95% confidence intervals were approximately half that of the group for all variables.
Our data indicate that each individual had a unique thyroid function. The individual reference ranges for test results were narrow, compared with group reference ranges used to develop laboratory reference ranges. Accordingly, a test result within laboratory reference limits is not necessarily normal for an individual."
Andersen S, Pedersen KM, Bruun NH, Laurberg P. Narrow individual variations in serum T(4) and T(3) in normal subjects: a clue to the understanding of subclinical thyroid disease. J Clin Endocrinol Metab. 2002 Mar;87(3):1068-72.
So, if TSH and the existing reference ranges for Free T3 and Free T4 are inadequate to diagnose and treat hypo patients, what should be done. From my position, clearly I think the best approach is clinical treatment. During this search, I found a letter written by a thyroid doctor for patients that he sometimes consults with, after initial evaluation and testing. The letter is then sent to the participating PCP of the patient to help guide treatment. In the letter, please note this info. "the ultimate criterion for dose adjustment must always be the clinical response of the patient. I have prescribed natural dessicated thyroid for your patient (Armour, Nature-Throid) because it contains both T4 and T3 (40mcg and 9mcg respectively per 60mg). This assures sufficient T3 levels and thyroid effects in the body. Since NDT has more T3 than the human thyroid gland produces, the well-replaced patient’s FT4 will be below the middle of its range, and the FT3 will be high “normal” or slightly high before the next AM dose." This is a link to the doctors website.
I greatly appreciate your time and patience in taking up my concern. I hope that I have given you enough evidence to reconsider my treatment. I assure you that I have selectively chosen this info, just to support my request. I can provide references to more scientific extensive scientific evidence than you would ever want to read, along the same lines. I hope this will persuade you to increase my thyroid meds, and Free T3 and Free T4 levels, as necessary to relieve my hypo symptoms. I look forward to a full discussion when I return for my next appointment.
Wow! Thank you for the wealth of information. Will read through all the attachments & then send it to my Dr.
You are very welcome.
I just noticed that I left out the word not, in the following sentence in the last paragraph. Should read as follows.
I assure you that I have not selectively chosen this info, just to support my request.
Hope this works for you. At the very least it should lead to a lively discussion with your doctor. LOL
Thanks! I'm also wondering if I have a conversion issue going on. From what I've read - if the free t3 is mid range and the free t4 is low - it could be a conversion issue. Do you know anything about that?
60 mg Armour - 6 wks
Free t4 (Range 0.7 - 1.8) - 0.7
Free t3 (Range 2.3 - 4.2) - 3.26
TSH (Range 0.32 - 5.5) - 1.671
Inadequate conversion shows as a low in the range Free T3, with normal to high Free T4. Your latest results are in the other direction. That is due to taking the Armour thyroid, which has a higher proportion of T3 than natural human thyroid hormone.
Thanks for the update - but I'm still a bit confused. Hope I'm not being a pest, but I'm still pretty new at learning about Armour and lab tests in general.
I thought free t4 was optimally supposed to be in the mid range. Is it a problem to have it at the lowest point on the range? Does it just take some time to get the free t4 levels up when you start on Armour?
Also, is free t3 optimally supposed to be toward the top of the range? If so, would an increased dosage accomplish this?
This is what I read on the Stop the Thyroid Madness website and I just want to be sure I'm interpreting it correctly. Maybe I'm misusing terminology (i.e. "conversion")?
FREE T4 LAB TEST: T4 is the thyroid storage hormone. Free in front of the T4 means you are measuring what is available and unbound. Generally, those on an optimal amount of desiccated thyroid will have a free T4 mid-range or higher when their free T3 is at the top and in the presence of healthy adrenals. If you have low FT4 and a mid-range or slightly higher FT3, it usually means the T4 is converting like mad to give you the T3 you do have, which means hypo.
Free T3 needs to be increased enough to relieve hypo symptoms. Many hypo patients, myself included, say that symptom relief required Free T3 in the upper third of its range and Free T4 around the middle of its range.
Since Armour has a higher amount of T3 than human thyroid hormone, when you raise dosage enough to get Free T3 high enough to relieve symptoms, that usually results in the Free T4 being around the middle of its range. It doesn't have to be right at the middle. When taking an NDT type med like Armour, if for some reason the Free T3 is good, and Free T4 needs to be increased, then it has to be done independently by adding a T4 med.
I don't agree with STTM in that paragraph. A low FT4 usually means the person taking desiccated is not getting enough T4 from their dose. They simply need more T4 to reach optimal levels than the ratio of T4 to T3 in desiccated can provide. Their FT3 can be at the top of the range and FT4 low because the ratio of T4 to T3 in desiccated is 4:1 (38mcg T4 for every 9 mcg T3), which is a lot of direct T3, and it can cause the FT3 result to shoot up quickly but the FT4 to drag behind. These folks simply cannot absorb enough T4 from the dose, and benefit from supplementing with additional T4 meds. STTM will try to convince you adrenals have something to do with the low FT4 levels in such a case, but I don't buy it. If someone's body is "converting like mad" their T4 to T3 then they really would benefit more from a med like straight T4/levothyroxine rather than desiccated like Armour; but that is the kind of thing STTM does not promote. So they point fingers at adrenals anytime there is someone who does reach optimal levels on desiccated alone. There is some very useful information on the STTM website but I think their one size fits all approach of "everyone should be on desiccated" is just as short-sighted as the common doctor approach of "everyone should be on T4-only meds".
Anyways, not to turn this post into a rant, but I don't think STTM is a one-stop shop reference for thyroid problems, even if you are taking desiccated (as I myself do). One thing STTM does right in my opinion, is give good dosing information. It is a shame your doctor has not given you more control over the situation to raise your dose more quickly (I did 1/4 grain every 2 weeks or so based on how I was feeling)-- it is safe to raise quickly like this in my experience until you get to about the 1 1/2 to 2 grain range, then go slower thereafter. Yes, the T4 component of desiccated takes 4-6 weeks to fully kick in, but since the med is primarily direct T3 the T4 has a more subtle effect than when you are on T4-only meds, or T4 with a low dose of cytomel (T3). As far as I can tell it looks like you could use a higher dose yet and see if your FT4 raises along with the FT3. The rule of thumb to aim for is FT4 in upper half of range, FT3 in upper third. If raising desiccated alone does not do it, you could benefit from adding synthetic T4 in addition to your desiccated dose. As gimel mentioned, symptoms will help guide you along the way as you raise your dose, which is why it is best to have a doctor who will listen and take those symptoms into account, rather than relying on numbers alone.
Thanks to both of you for the additional info. So it sounds like my free t4 level might continue to rise to higher levels with time.
I'll see if my doctor is willing to increase the Armour dosage. She was fairly receptive about doing that when I was on synthroid - but I always got the feeling she was rolling her eyes when we talked on the phone. If she doesn't, I'll probably gradually increase it myself per the Armour instructions (I know it's not ideal but I need to feel better) and go based on how I feel. I'll also get more creative about looking for other doctors within Kaiser who might be more willing to help. Other than this issue, I really like my doctor - but I'm tired of fighting...