Missing Thyroid Tissue????

[tjburly]

Thank you all for the information that you posted about your thyroid problem.  My husband has had so many thyroid problems.  His medication is constantly adjusted up and down.  His last TSH was 0.670.  A US of his thyroid done on 04/29/2010 indicated that there was "no thyroid tissue identified."  He is being referred to an Endocrinologist in Memphis, but the earliest we can get in is July 6.  There have been numerous adjustments to his meds.  In the last month or so he has experienced panic attacks, insomnia, always so incredibly fatigued.  Additionally, he has other health problems (chronic pain from debilitating back problems, i.e. 3 surgeries with fusion, plus scar tissue from surgeries, severe osteoarthritis, diabetes, heart problems, etc.).  He has not yet been diagnosed with Hashimoto's.  The FNP at the clinic is astounded that there was no evidence of the existence of thyroid tissue.  If there's no thyroid tissue, where did it go, what happened to it, etc. Since the panic attacks, etc., his medication has been changed from the generic Levothyroxine to Synthroid (no generic) first 175 mcg, and now up to 200 mcg.  Any information that you can give me regarding this kind of problem would be very much appreciated.

[gimel]

You'd be amazed at how many so-called expert Endos we hear about that were unable or unwilling to adequately diagnose/treat some of our members enough to relieve symptoms.   Rather than wasting all that time waiting, I still suggest that you call and find out now if the doctor is willing to answer those three questions with a resounding yes.  If not, you will likely be wasting your time.

[tjburly]

Thanks so much for your help on this.  Both my hubby and I are hypo and your posts have been so very helpful.  The doc we are to see is supposedly an expert in his field of Endocrinology, so I am very helpful that he can help.  My husband and I had mono back in January/February and his thyroid symtoms have worsened considerably since then.  I don't know that there is any connection between the mono and the thyroid symptoms, though.  I have already ordered the thyroid book mentioned here.  It just helps us so much because he and I know that this is not just all in his head (i.e. psychological or mental issue).  This site is wonderful!

[gimel]

Wow, that is an amazing list of meds.  I suspect that if his thyroid levels were optimized to relieve related symptoms, that some of those meds would become superfluous.  But I'm not a doctor obviously, just a thyroid patient.  

Regarding your question, you really are not treating T3 and T4, you are treating symptoms, by adjusting the levels of free T3 and free T4 (FT3 and FT4).  The thyroid glands produce mostly T4 hormone and some T3.  Most of this is inactive because it is bound up with protein.  Only the small portion that is unbound (free) is active to regulate metabolism and most other body functions.   Think of T4 as a storage hormone that circulates through the body.  As necessary it is supposed to convert T4 to T3 hormone.  T3 is at least four times as active as T4, so it is very important to know the level.  Many doctors don't bother to test for FT3 because they just assume that if they test for FT4, then they know the approx. level of FT3 as well.  

This is not the case when a patient does not convert T4 to T3 very well.  Also,  when on significant doses of T4 meds, conversion is inadequate.  For example, when I was taking that very same dose of 200 mcg of Synthroid, my T4 level was at the very high end of the range, yet I later found out my T3 level was at the very low end of the range and I continued to suffer with lingering hypo symptoms.  FT3 also correlates best with hypo symptoms,  So, in view of its importance, why not just check and make sure.  

As far as medication, the most effective way for many patients is to use a T4 type med, such as Synthroid, a long as they can achieve an adequate level of FT3 that way.  When they need additional FT3, then they can adjust it individually by taking a T3 med such as Cytomel, along with the T4 med, or some prefer to use a combo T4/T3 med such as Armour Thyroid or NatureThroid.

In my opinion I think you really need to find a good thyroid doctor, by which I mean one that can answer yes to those three questions I listed in my first post.  It would be great if you can find an Endo that also is a good thyroid doctor, because there may well be other testing that should be done as well.  Once you get the testing done and his FT3 and FT4 levels adjusted to relieve symptoms,  the doctors can better assess the need for the other meds.

[tjburly]

Okay, I'm confused.  When treating the T3, T4, is there a different medication prescribed, or do they just adjust the Synthroid.  (Sorry if this is a stupid question, but the whole thyroid problem is a bit overwhelming, especially when he has anxiety attacks, etc., which is totally and completely out of character/symptom for him).  He is on many, many meds and would some of the meds interfere with thyroid function.  (He takes the following meds daily:  Synthroid 200 mcg [takes this by itself 2 hrs before he takes any other meds]; then he takes Avinza 90 mg(1 daily for chronic pain); Prozac 40 mg (1 daily); Lyrica 150 mg [for peripheral neuropathy]; Actos 30 mg [diabetes]; Triglide 160 mg [high triglycerides]; Glimepride 4 mg twice daily [diabetes]; Vytorin 10/40 [cholesterol]; Plavix [blood thinner - had a stroke in Feb, 2008]; Klor-Con 10 [potassium supplement]; Digoxin 0.25 mg (heart);  Indomethacin 25 mg daily (headaches - Rx by Neurologist); and Zonisimide 100 mg once daily); Flomax .4 mg (once daily); and Lasix 20 mg. (once daily).  Needless to day, despite our group insurance and his Medicare our pharmacy bill (copays) is more than the mortgage payment each month.  I would think that all these meds might also have a bearing on his symptoms, but have never seen anything addressing this.  It seems that whenever something changes, we never stop taking a med, we only add another to the list.

Thanks so much for your help.

[gimel]

I just saw the test results you posted on another thread.  Many of the tests are somewhat obsolete and not very useful.  One exception to that is the TPO ab test result, which was high.  That and the symptoms you mentioned would point to the most prevalent type of thyroid problem, which is Hashimoto's Thyroiditis.  If you are not familiar with this disease, it causes the autoimmune system to produce antibodies that attack the thyroid glands until they are ultimately destroyed.  While this is going on, especially at the beginning, the TSH levels can vary widely, due to the glands leaking thyroid hormone.   Many of our members have gone through this very thing.  One of our very experienced members (TamraW) highly recommends this book about Hashi's.          www.thyroidbook.com

Beyond that, I highly recommend what I suggested above.

[gimel]

Has your husband been tested for anything other than TSH, such as FT3, FT4, TPO ab, or TG ab?   If not, that would be a good idea to get done now.  From what you said about his meds being constantly adjusted up and down I expect that the doctor is using TSH as a diagnostic, which is totally inadequate.  TSH is a pituitary hormone that is affected by so many variables  that at best it is an indicator, to be considered along with more important indicators such as symptoms, along with levels of the actual, biologically active thyroid hormones free T3 and free T4 (not to be confused with total T3 and total T4).  

In my firm opinion the best way to treat a thyroid patient is to test and adjust the levels of the active thyroid hormones, FT3 and FT4, with whatever type medication is necessary to relieve symptoms, without being constrained by the resultant levels of TSH.   A good thyroid doctor would be willing to treat your husband this way.  It does not have to be an Endo, just a good thyroid doctor.  Many Endos specialize in diabetes, not thyroid, and many do not meet my definition of a good thyroid doctor because they have the "Immaculate TSH Belief".  

Rather than waiting for all that time until July 6, and maybe finding out that the doctor doesn't fit your need, I think I would call there now and ask to speak to a nurse and then ask her these questions.  1.  Is the doctor willing to test for free T3 and free T4, along with TSH?  2. Is the doctor willing to treat a patient for symptoms, by adjusting the levels of free T3 and free T4 as necessary to relieve symptoms, without being constrained by resultant TSH levels?  3.  Is the doctor willing to prescribe meds other than synthetic T4?  If the answer to a question is no, then you should keep looking for a good thyroid doctor that can answer yes to all three questions.