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Hypothyroid with a normal TSH
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Hypothyroid with a normal TSH

This is an extensive post but gives many details that I believe are necessary. I have had increasing hypothyroid symptoms for about 3 years with current levels becoming intolerable. After becoming insistant with my doctor he finally started me on levothyroxine 25mcg (TSH has always been normal). After four weeks on this therapy the muscle and joint pain became so bad that I could barely walk. At six weeks my labs showed low FT3, low normal FT4, normal TSH. He took me off the levothyroxine and started me on 5mcg of liothyronine. After two doses I had noticeable relief from the pain (could cut back on the large amounts of ibuprofen) but no other improvements noted. After six weeks of this therapy my labs showed low normal FT3, a drop in FT4 to the bottom of the range and an increase in TSH (still normal though). I visited my doctor and told him that my energy levels were at an all time low. At this point I don't think he new where to go so he put me back on the 25mcg levothyroxine as well as the 5mcg liothyronine and gave me a referral to an endocrinologist.

An interview with the endocrinologist resulted in him stating that I was "clearly hypothyroid" although he was a bit confused about my ultrasound that showed no thyroid abnormalities. A complete set of labs were ordered which came back with FT4 in the normal range, FT3 in the low normal range, TSH normal, TPO antibodies were ok. An ACTH stimulation test showed good adrenal response and no other endocrine problems were found. Please note that I was taking the low doses of thyroid hormone. His assistant called and stated that I was to be released back to the care of my primary doctor.

At this point I was extremely dissapointed and still suffering. My MD is at a loss to explain anything much less offer a solution. I requested a reverse T3 lab be done but this never happened??? Previously when I asked about this his reply was "we don't do that". My continued requests have resulted in a referral to another docter who does do RT3 testing (the only one in my area).

I have many questions about this but the one that comes to the front is why all the mystery about what seems to be a thyroid hormone problem. I seem to have resistance at every step of the way. I called the endocrinologists office inquiring about non-thyroidal illness syndrome and was told that my symptoms were not consistant with NTIS and I was not hypothyroid??? Getting FT3 and FT4 labs ordered by my primary docter was only accomplished because of my insistance???

As for the hypo symptoms. Does anyone have any idea of what is going on? The symptoms at this point have been very difficult to tolerate but I have no choice but to grit my teeth and hope that the next docter has some answers. Patience (and my wallet) have become very thin. Please advise.
26 Comments Post a Comment
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Avatar_f_tn
You don't give exact lab numbers, so let me give you kind of a "general" answer and if you want to post exact numbers (with reference ranges because they vary lab to lab), we can be more specific.

FT4 often has to be in the middle of the reference range before symptoms are relieved.  FT3 should be higher in its range and in the upper half to upper third of the range.  (These are rules of thumb, and don't work for everyone.  They're a "starting point" until you know where you feel best.)  Both FT3 and FT4 have to be in balance for us to feel our best.

Do you split your T3 meds into two half doses?
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1383383_tn?1279360481
Thank you for your interest. The following labs were taken without the thyroid supplements being taken for several weeks. I stopped taking them after the endocrinologists office called and said that I was not hypothyroid??

FT3      2.30   (2.57-4.43) pg/mL

FT4      0.64   (0.50-3.00) ng/dL

After my labs revealed that I did not have a problem with TPO antibodies I decided to try supplemental iodine (500 mcg/day). These labs were unchanged by that but it is interesting to note that the iodine did provide some much needed relief from symptoms.

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1383383_tn?1279360481
Forgot to mention (yes, my memory is shot). I took the 5 mcg liothyronine in the morning (single dose) and the 25 mcg levothyroxine at bedtime.

Since I did take these meds individually for an extended timeframe I can give some comparison. The levothyroxine did have some very subtle effects but when all is said and done I would say it was detrimental. The liothyronine did show some definite benefit though not nearly enough.
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Avatar_f_tn
Your FT3 and FT4 are clearly hypo.  That's a very unusual range for FT4, but if it's accurate, you are in at 6% of range, and as I said above, most of us find that FT4 has to be around 50% to feel well.  Your FT3 is below range, and that often has to be 50+% of range.  So, it appears you would benefit from taking thyroid hormones.

It's not unusual for symptoms to worsen somewhat after starting meds.  Your body has become used to not having thyroid hormones available, other organs are trying to make up for that, and a whole rebalancing act has to go on in your system.

Levothyroxine (T4) is very slow acting and takes weeks to build in your blood.  It should be taken on an empty stomach (which is why most people take if first thing in the morning and don't eat or drink anything for half to one hour after).  If you take it at night, you should be sure that it's at least 3-4 hours after any food or drink, and if you are very hypo and your digestion has slowed, it could be even longer.

Liothyroinine (T3), on the other hand, is very fast acting and quickly neutralized by your body if not used promptly.  For that reason, many people split the dose into two half doses, taking one first thing in the morning and the other sometime late morning or early afternoon.  Splitting helps minimize the peaks and valleys in T3 levels that you can get otherwise.

If I were you, I think I'd give meds another try.  Until you get both FT3 and FT4 to appropriate levels (or close) for you, you are probably not going to feel a lot better.  If you're not customarily sensitive to meds, you might try starting on a slightly higher dose of T4.  That might get you through that interim period faster.  Whether or not you want to combine that with some T3 is another decision.  Because it is so fast-acting, T3 will make you feel better in a shorter time than T4 will.  However, if you want to try T4-only therapy, which is argueably the easiest and relies on the body's natural conversion process to respond to demand, you can always add T3 in later if you find you convert slowly.

Have you tried taking the T4 in the morning?  I also think you'd do better splitting the T3.  



I'd suggest having iodine levels checked.  If you are deficient (rare in the developed world), your body cannot make thyroid hormone.  
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Avatar_f_tn
Have you tried avoiding fluoride? I've read fluoride can interfere with iodine absorption, so even if you take a supplement, it may not work. I've also read some things about NOT taking iodine supplements, so it's probably best to talk to a good doctor (which I know is not easy to find)!

I started avoiding water with fluoride and started using fluoride-free toothpaste, and my hypothyroid levels started "improving", although I now have symptoms of hyperthyroidism, so I am still trying to get it all figured out since my doctor keeps lowering my Synthroid dose. Someone also recently told me to avoid soy and that perhaps coconut oil can help! These are all just some things I have heard. I hope you start feeling better soon.
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1383383_tn?1279360481
Thanks for the comments.

I did notice changes when I was on the levothyroxine that seemed to indicate a "re-shuffling of the deck" so to speak. The liothyronine almost immediately went to work and showed definite improvements.

The thing that I find confusing is that I took both of these individually for a period of at least six weeks before having labs done with very different results. Here's the numbers.

Levothyroxine 25mcg only:

TSH   1.80   (0.30-3.00) uIU/mL

FT3   2.33   (2.57-4.43) pg/mL

FT4   0.79   (0.50-3.00) ng/dL

TT4   6.5     (4.5-10.5) ug/dL

No surprise that the FT4 is higher than labs not supplemented with levothyroxine. I did see some ups and downs with this therapy but in the end I thought things were worse. The pain got really bad at four weeks in. Perhaps this was just coincidence.  

Liothyronine 5mcg only:

TSH   2.38   (0.30-3.00) uIU/mL

FT3   2.65   (2.57-4.43) pg/m

FT4   0.59   (0.50-3.00) ng/dL

No surprise again, the FT3 increased marginally. As stated, I saw quick improvement with this therapy (some relief from the pain) but in the end it was unsatisfactory. The one thing interesting here is the change in the other numbers. FT4 down, TSH up.

Levothyroxine 25mcg and Liothyronine 5mcg (these were taken at a different lab):

TSH   1.60   (0.35-5.50) UIU/ML

FT3   2.25   (2.20-4.20) PG/ML

FT4   1.07   (0.70-1.70) NG/DL

TPO Abs   19.9   (0.0-35.0) IU/mL

Perhaps this is why the endocrinologist said I was not hypothyroid after stating that I was "clearly hypothyroid". Just for the record. The labs sent from my doctors office did not have reference ranges (inexcusable). I keep copies of all my own labs now.


I am aware of the fluoride problem (as well as other hallide exposure) and this is one reason I started the iodine. Iodine is supposed to drive out fluoride and bromide (why are these in things we consume anyway). Iodine defeciency does not seem to be a problem. I did an iodine patch test and I ended up washing it off. It did not want to absorb.

I did note a definite improvement with the iodine. Initially I had a lump in my throat but that subsided in a few days. It took about two weeks to really kick in. I had some ups and downs during that period but mostly ups.

Just for the record. My general health is very good. Two years ago I started doing cardio exercises at a local fitness club attempting to build endurance. After struggling along with this for a couple of months I gave up. The more I exercised the worse my endurance became??? The gym regulars were baffled by this. My doctor ordered a pulmonary function test and a cardiac stress test. Everything looked good there. BMI 21.2, no smoking, no alcohol, no "recreational" drugs, fasting glucose levels consistently under 90, blood pressure is typically in the 105 over 72 range but does vary. I have seen it as low as 90 over 50 (problems encountered at this level). I watch my diet carefully to avoid sugars and HFCS. Let me state that weight gain has not been a problem (as is often the case in hypothyroid patients). I do have a recurring problem with mild anemia and have been supplementing with iron. In the past the anemia did respond nicely to the addition of iron (I eat very little meat). Serum iron, ferritin, etc. respond well although CBC is slow to improve.

Don't know if this brings up any other thoughts (other than TMI) but that is why I am posting. Thanks again for the info. When you don't have answer's, it's good to know that others are listening.

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Avatar_f_tn
Well, yes, in that last set of labs, you are technically "not hypothyroid", i.e. you are in reference range on all tests.  In fact, your FT4 is at 37% of range, which is getting there.  However, FT3 is still abysmal.  Those labs, on 25/5 of T4/3, do show that you were moving in the right direction.  

Iron is necessary for our bodies to use thyroid hormones.  

I don't know if you were already hypo two years ago when you started your cardio program (did you have hypo symptoms back then?).  If so, be aware that being hypo slows your body's healing process significantly.  Little injuries (that we all incur in any exercise program) don't heal properly and can piggyback on each other.  I had a similar experience before I knew I was hypo.  I've always been a swimmer, and I still felt fine while in the pool, but when gravity hit me again, I was in pain.  

One other thing to check out might be selenium.  The enzymes that catalyze the conversion of T4 to T3 are selenium based enzymes.  In that last set of labs, your FT3 is very low relative to your FT4, especially considering you were taking T3 at the time.  Of course, it's still a bit hard to tell if you convert slowly until FT4 reaches a point where there is enough T4 available for conversion.  
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Avatar_m_tn
I'm not sure exactly how much you know about the basics of Thyroid.  So here is a quick Thyroid 101.

TSH is Thyroid stimulating hormone. This is a hormone produced by the pituitary gland in your brain.  WHEN EVERYTHING IS WORKING CORRECTLY, the pituitary is like a thermostat for Thyroid. It measures the amount of thyroid in your blood and if it senses more is needed.  It produces thyroid Stimulating Hormone (TSH).  This by its name indicates that it will alert the Thyroid to pump out more thyroid hormone.  If the pituitary senses plenty of Thyroid, it will produce less or stop producing TSH thus shutting production by the thyroid to produce hormone.

TSH is the holy grail according to training and the opinion of most Dr's and most Endocrinologists.  Unfortunately it is NOT TRUE.  TSH is affected by a myriad of things and the pituitary itself can be messed up.

The thyroid itself produces Primarily 2 different types of Hormones. T4 and T3.  The vase majority is T4.  T4 hormone is the "storage hormone". that is it is not used directly. Instead it remains in the blood in ready reserve.  When the body needs more thyroid at the cellular level, the T4 is converted into T3.  T3 is the ONLY thing that is used by the body at the cellular level.

Now then, both T4 and T3 can be in one of two different conditions or states.  One is where it attaches to a protein molecule.  When T4 or T3 are attached in this way, they become biologically useless. That means that bound T4 can not be converted into T3. And bound T3 can not be used by the cells in your body.  So the only thing that the body uses are hormone molecules that are NOT bound by a protein or "free" from the protein. Since the body only uses these "free" hormones it why it is so vitally important to have the "free" T4 and "free" T3 tested.

I believe from what you've stated. You're Hypo and have always been under-medicated sufficiently to make you feel well.  Unfortunately this is not all that uncommon.  Many if not most Dr's will not want to medicate a person who is in the normal ranges or will medicate just enough to BARELY get you into the very lower end of the normal ranges.  Then when you still don't feel well. They do not believe that it is Thyroid and start looking elsewhere.  

Notice your experience.  When your FT3 started to get up into the  range you noticed feeling better.  And this makes perfect sense as FT3 is the ONLY thing your body uses.  It also tells you that when feeling better that this was the CORRECT track for treatment. That is that IN FACT your body has told the Dr and you and everyone else that is what it needs!  that is more thyroid.  

It is possible that you can get to the proper place where you will be symptom free with T4 only medication.  But this will take longer as the levels need to get up first in FT4 and you will have to see what kind of response or rise in FT3 you get. Some people T4 only works fine.  Others who don't convert well may need to add T3 medication to finally tweak and optimize the dosage for them.

Hope this helps.
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1756321_tn?1377771734
Excerpt from Dr Mercola's article "Optimum Diagnosis and Treatment of Hypothyroidism With Free T3 and Free T4 Levels"...

"If the Free T3 level is significantly lower than the Free T4 level, it is next to useless to treat with Synthroid/ Levoxyl/Levothroid (T4) only replacements. If the patient could not muster sufficient T3 from their gland (which produces some T3 directly), then they are certainly not going to convert enough T3 from T4 only. Traditional medicine assumes that preparations like Synthroid which are T4 only converts peripherally in the body to T3 in fairly standard amounts and at fairly standard rates. Unfortunately, clinical experience shows this is not true for the majority of patients.

Consistent measuring of both free T3 and free T4 blood levels in hypothyroid patients who are on T4 only therapy will very rapidly dispel this myth. A certain percentage of hypothyroid patients do convert enough T4 to T3 at a sufficient rate for T4 treatment to be adequate as a source of T3; but a substantial proportion of patients require some combination of both exogenous T3 and T4."

"So one should use a combination of T4 and T3 which compensates for the inability to convert T4 to T3. This is most frequently done with Armour thyroid. However, Cytomel, which is T3 only, can be used in combination with one of the T4 only preparations. It is important to recognize that T3 should always be prescribed twice daily due to its shorter half life. This is typically after breakfast AND supper for compliance reasons.

Taking the dose at these times overcomes traditional medicine's major objection and resistance to using natural thyroid preparations - its variability in its blood levels. Armour thyroid is desiccated thyroid and has both T3 and T4. Most doctors using Armour thyroid are not aware that Armour thyroid should be used twice daily and NOT once a day. The major reason is that the T3 component has such a short half life and needs to be taken twice daily to achieve consistent blood levels.

Once or twice daily dosing one can then optimize both the T4 and T3 levels, with whatever thyroid preparation is required. This is not possible in most hypothyroid patients with T4 only preparations. It is important to use a preparation with T3 because T3 does 90% of the work of the thyroid in the body."
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649848_tn?1357751184
I agree that you have been hypothyroid for a while and should be on medication.  As goolarra stated, it's not unusual for symptoms to become worse, while the body readjusts to having the hormones again.  The adrenals, which try to compensate for the thyroid have to "back down" and let the thyroid medication take over.

Just because your levels were in the so called "normal" range, was no reason for you to be taken off meds.  The whole idea of being on medication is to get/keep levels in the normal ranges...... Just getting there is not enough; you have to keep going until your reach the point where you feel good.

One thing I noticed is that you were tested for TPOab, which was, for all practical purposes, negative; but I don't see a Thyroglobulin Antibodies (TGab).  Both are necessary to confirm/rule out Hashimoto's, because some of us only have TPOab, some only have TGab and still others have both, so without them both, the result is inconclusive.

It's true that most people on T3 medication should split the total daily dose into more than one; however, with only 5 mcg, that might not be advantageous.  I was on 5 mcg T3 med (with my T4 med) for over 3 years and I took it all at once, but I did that a bit later in the day...  I would take my T4 med when I got up at 3:30 am, but didn't take the T3 med until around 7:00 am... it kept me going for the day.  I'm now at 7.5 mcg T3, with my T4 med and I do take 5 mcg in the morning, with 2.5 around noon.  

I would never suggest that anyone take a T3 med after about 3:00 in the afternoon, because it might interfere with sleep.

There are a lot of people who do just fine on T4 only med, but you can't know what will work for you until you try it and give it enough time to stabilize.
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1383383_tn?1279360481
Many thanks to all!

In response to goolarra's post. Yes I was experiencing hypothyroid symptoms during this exercise program. This is in hindsight because I did not recognize these symptoms for what they really were. The problem was there but just not as severe. I find it a bit confusing about the different reference ranges. From what I see, the lab results cannot be directly compared from one laboratory to another. In the first lab FT4 is much lower in the range than the last. Taking the same dosage of levothyroxine with (what appears to be) a different result. Seems like comparing apples to oranges? I'm inclined to go with the first lab because the TSH range is (in my mind) more representative of the latest standard as compared to the last lab. In the lab from post 3 the FT4 with 25mcg levothyroxine shows only marginal improvement over baseline. I have been taking Selenium along with Zinc and a tiny amount of Copper. My primary focus is to get my ferritin levels up. Iron binding capacity is real good so I should be able to utilize added dietary iron. My hope is that improved RBC numbers will follow.

In response to flyingfool. Yes I am pretty much up on thyroid function and the basics of T4 and T3 (after getting bounced between doctors you look into it yourself). The liothyronine did show some immediate improvement but only in relieving pain. Unfortunately it did not continue? Didn't say anything to my doctor but I doubled the liothyronine dose for a week (morning and evening) to 10mcg but had no response. This is not what I expected. By the way, I did have a prolactin lab and it showed no problem. Luteinizing hormone was ok but this was a one time draw and does not give an average. All things considered, I do not suspect a pituitary problem. The one thing that keeps cropping up is reverse T3 overload. I'll give my reasons at the end of this post.

In response to Red_Star. Doc Mercola is wonderful. He's not afraid to "rock the boat". This seems very appropriate in so many instances. I did not see this information on his website so thanks for bringing this to my attention.


The one thing that nobody seems very familiar with is reverse T3. This is the one thing that I must look into more. My understanding is that under certain circumstances the enzymes that control the conversion process get messed up and start converting T4 into excess amounts of RT3. The overload blocks receptors and keeps T3 from being able to do it's job with the end result typically being low FT3, low normal FT4, normal TSH and hypothyroid symptoms. Sound familiar? This is why I was requesting this lab from my doctor. No sucess there but he did refer me to a doctor that does. He's not in my health care network (maybe a plus) so I get to dig into my pocket again. I do have an appointment and I am hopefull that he can help. I will keep everyone up to date on this.

Once again I can't thank everyone enough. It's great to have this kind of support. Every bit of information adds up to give a clearer picture.

Many thanks!
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1383383_tn?1279360481
Thanks Barb 135. I looked through my labs and could not find a Thyroglobulin Antibodies test. I'll ask about this at my next appointment. Don't know if it matters but I never had anything like a goiter and the ultrasound showed a uniform thyroid gland (no irregularities). As stated previously, my focus is to get ferritin levels up and look into this reverse T3 posibility. Thanks
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Avatar_m_tn
Just wanted to supplement the good info you have been getting  with this.  

"FERRITIN test: Measures your levels of storage iron, which can be chronically low in hypothyroid patients. If your Ferritin result is less than 50, your levels are too low and can be causing problems…as well as leading you into anemia as you fall lower, which will give you symptoms similar to hypo, such as depression, achiness, fatigue. If you are in the 50′s, you are scooting by. Optimally, females shoot for 70-90 at the minimum; men tend to be above 100. If your ferritin is much higher, you could have hemochromatosis, a genetic disease in which too much iron is absorbed. Or, higher levels of storage iron can be caused by an on-going inflammation (which thrusts iron into storage, and is COMMON with many thyroid patients), liver disease, alcoholism, diabetes, asthma, or some types of cancer. Or it may be normal for YOU. Men are generally higher than women without having the above problems.

You should be off all iron for at least 12 houes before testing to see what your body is hanging onto."  
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Avatar_f_tn
As I mentioned above, 0.5-3.0 is a very unusual reference range.  We occasionally see odd ranges, but by and large, the latest range of 0.7-1.7 is much closer to what we usually see.  What makes me further uncomfortable about that first range is that the lower limit is lower than we usually see and the upper limit is higher.  Most would agree that the bottom half of the 0.7-1.7 range should be considered hypo.  However, as long as units are the same, I do think they are directly comparable.  If your result is 1.0, it's going to be 1.0 at the next lab as well, regardless of their population range.  So, comparing yourself to yourself, the range becomes irrelevant.  An increase from 0.59 to 1.07 is an increase of 0.48.  We often use 50% as a rule of thumb, but I'd be very reluctant to use that on a range of 0.5-3.0 (that would be 1.75...higher than the upper limit of the last range).  

If you were hypo when you tried your cardio program, you probably have your answer as to why it lessened your endurance when it should have been improving it.  

RT3 is a very gray area in endocrinology.  Most mainstream doctors disregard it, but many alternative medicine doctors live by it.  Basically, there are only two ways for your body to get rid of T4...either convert it to T3 or convert it to RT3.  Conversion to RT3 is our body's natural way of keeping T3 levels down in times of starvation, illness, trauma and stress, etc.  It's an appropriate and proper response as long as it doesn't outlive the presence of the stressor.  

You presented one theory...that the body continues to produce too much RT3 after the stressor has been removed, the RT3 blocks receptors squeezing T3 out, and you are hypo.  I have recently read an article that debunks some of that theory.  Apparently, at least in a Petri dish, RT3 does not block receptors.  The author's conclusion was that if FT3 levels are good, it doesn't really matter what RT3 is doing.

As far as Mercola's theory is concerned...why would one think that conversion would be impacted once the thyroid stops working?  Conversion is not a thyroid process, it's a metabolic process, and very little of it happens in the thyroid, the vast majority happens at peripheral sites ubiquitous throughout the body.  Perhaps the theory of using T4 only is not what's at fault, but how it's typically applied in mainstream medicine.  Proper conversion depends on a certain critical level of FT4, and many doctors stop short of treating to that level.  My theory, anyway...          
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1383383_tn?1279360481
I did check my last hemotology lab and ferritin came in at 48.2. Need to get that much closer to 100. I hope the iron supplement I'm taking will do the job. The pharmacist that recommended it (Enzymatic Therapy Ultimate Iron) told me to take one gelcap rather than the suggested two. I hope to get hemotology labs done soon so that should give me an idea if I need to up the dose.
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1383383_tn?1279360481
I see your point about the reference range differences. Still confused as to why there is not a universal standard? The different measurements (IU/mL, pg/m, etc.) are also a source of confusion. Is this a manifestation of the controversy in medical circles concerning diagnosis and treatment of thyroid disorders? Maybe it's not as bad as I'm thinking. Wish I could just leave the interpretation up to my doctor but quite frankly, I've lost some faith there.

It appears that many hypothyroid patients are achieving good results by addressing RT3 issues (of course this is contingent upon lab results). I joined an RT3 help group (RT3_T3***@****) that advises people on how to deal with elevated RT3. The therapy consists of Cytomel only in a  gradually increasing dose up to 75mcg with the intention of supressing thyroid production of T4. It appears that by depriving the T4 shuts down the conversion to RT3 (no T4 = no RT3). I find it interesting to note that my own experience with levothyroxine resulted in a great increase in the muscle and joint pain. My understanding is that adding T4 is essentially throwing "fuel on the fire". The switch from levothyroxine to liothyronine resulted in a definite decrease in the pain. This doesn't necessarily prove anything but is an observation that I cannot ignore. It is also important to note that the moderator's on this group have overcome this condition sucessfully and are able to guide members through this process. This protocol is outlined at thyroid_rt3.com.

After all the disapointment I have had I really feel that this may be an answer for me. Nearly two years of my life have gone down the drain because of this (unresolved) issue.
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Avatar_f_tn
I think the units used for different tests depend on the amount of the substance we expect to find.  The effort is to get a result that is easily readable and understandable without having to count zeroes to the right of the decimal point or have too many commas to the left.  Something that is in very low concentration has to be expressed in different units from something with a high concentration.  Of course, add to that that different countries use different units as well.  No, don't leave it to your doctor to interpret...

75 mcg is a lot of T3, something equivalent to 300-375 mcg of levo.  I understand the theory and the protocol, which makes logical sense.  However, I also think it sounds a bit risky.  I'd want to be working with a doctor who has some experience with it.  Apparently, you want to be sure your adrenals are in really good shape before attempting it.
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1383383_tn?1279360481
I understand the concerns related to using 75mcg liothyronine and the importance of having a doctor on board with this protocol. It's unfortunate that the vast majority of practitioners will not even look into this, including my own doctor. I credit him for at least looking up a doctor that does do RT3 labs and directing me to him. I just wish this had happened a year ago.

I have an appointment next week and am hopefull for a positive result. I'll get back and post after that visit if you would like to no how it goes.
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Avatar_f_tn
I would really appreciate your keeping us informed.  I don't think we've ever had a member posting as they went through this protocol, and it would be really great to have a thread that others could read so they'd know what to expect.

Best of luck with your new doctor and your RT3 test...  
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1383383_tn?1279360481
Reporting the latest info.

My recent doctors visit went well. Many things were discussed and I expressed my concern with elevated reverse T3. The doctor was well informed on this matter and ordered the necessary labs.

The results were very revealing.

T3 Free    2.76    [2.57-4.43] pg/mL
T4 Free    0.99    [0.50-3.00] ng/dL
TSH          2.17    [ 0.30-3.00] uIU/mL

These numbers have all come up. Not sure why but the most important is the following.

T3 Reverse    207  f    [90-350] pg/mL

This statement was provided with the lab result.


INTERPRETIVE DATA:  Triiodothyronine, Reverse

This test was developed and its performance characteristics determined by ARUP Laboratories.The U.S. Food and Drug Administration has not approved or cleared this test; however, FDA clearance or approval is not currently required for clinical use. The results are not intended to be used as the sole means for clinical diagnosis or patient management.

Access complete set of age- and/or gender-specific reference intervals for this test in the ARUP Laboratory Test Directory (aruplab.com).


While the RT3 level is within the reference range the important figure is the ratio between FT3 and RT3. I used the calculator on "Stop the Thyroid Madness" and came up with a 13.3 to 1 ratio. This has to be over 20 to 1.

Another lab that provided useful information.

Testosterone    350  f    [280-800] ng/dL
Free Testo        3.3   Lf  [5.6-19.0] pg/mL

The doctors that I visited previously had only ordered Total Testosterone and used that result. This was clearly a mistake.

The low Free Testosterone explains many issues I have been dealing with. My hope is that by increasing this level will allow me to reduce or eliminate the antidepressant (Wellbutrin) and anxiolytic (Buspar).

Questions abound. Why were these labs not ordered by my previous doctors? Do they not know about these things? Should they go back to medical school?

I rely on medical professionals to manage my health care. Up to now this has not happened.
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Avatar_f_tn
First, thank you so much for the update.

Has your doctor determined, then, that your RT3 level is not an issue and you are not a candidate for T3-only therapy?  I've read different interpretations on the ratio from different sources.  Some say the ratio should be between 10 and 20, preferably closer to 20.  Others say that it should be above 20.  As with everything concerning RT3 (thyroid!), there isn't a lot of consensus.

Tough questions...  A good part of the practice of medicine is opinion.  Some (hopefully, most) of it is based in science, but doctors have their biases.  They repeat what they learned in med school.  How many years has it been since reliable FT3 and FT4 testing has been available?  Yet, TSH is still considered the "gold standard" in thyroid testing.  Why would anyone think an indirect measurement is more important that the direct measure of the actual thyroid hormones?  What they learned in med school, they don't let go of easily.  The supremacy of TSH is STILL being taught in med schools today, so going back probably wouldn't help a thing.

RT3 is a controversial subject with much of mainstream medicine not believing in it or believing it's important.  Unfortunately, Wilson, the first doctor to really talk about RT3 dominance (also called Wilson's Syntrome or Wilson's Temperature Syndrome) had a patient die under his protocol.  His critics say he killed her; his supporters say she didn't follow the protocol and killed herself.  Ths tainted anything to do with RT3.

I've come to the same conclusion you've come to.  Those of us who are capable have to manage our own health care...I don't know what people who aren't capable do (but I shudder to think).  I research every decision my doctor makes and question everything he says if it doesn't make sense to me.  

What's your doctor's treatment plan for you now (regarding thyroid)?    

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I have an appointment with my Doctor this week and I guarantee the RT3 issue will be the main topic. At my last visit I asked what criteria he used to determine an RT3 problem and he stated a ratio of over 20 to 1 was needed and perhaps as high as 30 to 1. This is probably a rare circumstance but we'll see. My research indicates the 20 to 1 figure to be the standard (if there is one).

Dr. Wilson's interpretation of this issue is basically correct. It is unfortunate that the AACE and the American Thyroid Association do not give his work any merit. I do not intend to follow his treatment protocol but the use of T3 only supplementation is correct. The information on thyroid-rt3.com is what I would like to follow. The steps are outlined in detail and give all the information necessary to avoid any pitfalls.

The low testosterone is another issue that must be addressed. It is my understanding that the symptoms of low T and Hypothyroidism are very similiar and my guess is they have an additive effect. Why this issue was not diagnosed by my primary care physician as well as the endocrinologist I visited is inexcusable. By the way, my sister was also found to have low testosterone so it's not just a guy issue.

I am fortunate in that I do not have any complicating issues such as Diabetes, Lupas, Lyme Desease, etc. My only concern is whether my iron levels are sufficient and that my adrenal function is good enough to support T3 only therapy. This will be discussed as well.

I'll keep you informed.
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1383383_tn?1279360481
It has been many months since posting so an update is in order. Much has happened and I am happy to say that things are looking good. I have had several Doctor visits that have been very productive as well as informative.

My Doctor was clearly hesitant to address the RT3 ratio problem but wanted me to start Testosterone replacement immediately. While not discounting the presence of an RT3 ratio issue I believe his rational was to correct the Testosterone level in the belief that this would allow the RT3 to correct itself. This approach has been very beneficial in making me feel better but the Hypothyroid symptoms persist. I made this known to him and requested that I be placed on T3 (Cytomel) only.

I have been on this therapy since May first and am currently taking 50mcg per day in 10mcg doses at five hour intervals. I have authorization to go up to 75mcg which is my goal.

So far I have only good things to say. Contrary to what I was told my blood pressure has been stable and if anything has improved. Heart palpitations do not seem to be a problem. My resting body temperature remains low at about 97.2 deg. but this should correct itself. I take a dose at bedtime and at 1:40 AM and this allows me to sleep very soundly (a blessing). Muscle and joint pain has seen tremendous reduction.  It seems that my digestion has improved also. The antidepressant medication (Wellbutrin) and Anxiolitic (Buspar) have been eliminated with no ill effects.

I had some reservations when starting this therapy but after the first week those reservations were gone. I was initially authorized to only use 20mcg of Cytomel per day but after a very favorable response I contacted my Doctor's office and requested an increase.

My information on clearing RT3 is that the process takes 10 to 12 weeks on average. At that time the Cytomel will probably need to be reduced to a maintenance level with dosing based upon how I feel. The only thing that must be avoided is over stimulation. This has not been a problem (at least in my case) and is the reason for very gradual dose increases.
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Avatar_m_tn
Thanks very much for the update.  It is very valuable for us to get that kind of feedback on a treatment that that is used so infrequently.  

Glad things are going well for you.  Please keep us tuned in to your further progress.
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You are very welcome. I will continue to write updates as my therapy progresses. While I still have some concerns I do believe my understanding of this condition has improved tremendously and I am confident that this knowledge will be of great benefit. I am so very thankful for the input from community members such as yourself. Please feel free to ask questions and offer suggestions. Sharing information is what this is all about.

I initially posted in order to obtain information on Thyroid Hormone issues as related to my situation. That purpose has changed to some extent. My hope is that this information will be beneficial to others that are not getting proper diagnosis and treatment.

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Avatar_f_tn
Yes, thank you for the update.  I'm happy to hear you're feeling better.  I look forward to hearing more.
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