Confused

[pnroberts]

14 years ago I started gaining weight, loosing hair, had been diagnosed with Vitiligo, had chronic diarrhea, I was tired all the time, had trouble sleeping, had high cholesterol, kidney stones, had a goiter and had heat sensitivity. I was in the military at the time and after a ton of tests they found my thyroid numbers were off and diagnosed me with hypothyroid. I was started on synthroid right away. I am still having issues today except now I also have high blood pressure. I was seeing doctors at the VA but felt I wasn't receiving adequate monitoring as I was still feeling unwell. I hadn't been taking my synthroid for over a year so I recently went to a civilian endocrinologist to see what they thought. these were the results of my blood draw.

TSH was 3.54
Free T4 1.2
THYROPEROXIDASE ANTIBODY >1300

They called me with the results and said that I needed no treatment and did not need the synthroid.

How could I have been diagnosed with hypothyroid previously and responded to synthroid and now all of a sudden it's not longer an issue? A thyroid does not repair itself as far as I knew. I still have all of the symptoms above yet  my numbers say that I don't have a thyroid problem. The doctors want to put it on the back burner and not treat it. Why would my antibodies be so out of control if there were no auto immune disorder?

Any suggestions? What should i be getting tested for? Why such abnormally high antibodies but normal TSH and T4? Why do I still feel awful with new symptoms appearing almost weekly?

Thanks in advance for your help

[gimel]

Kidney stones can be a symptom of hyperparathyroidism.  I would make sure to get tested for calcium.  Repeat test results over about 10 are indicative that further action is needed.  Definitely worth checking out.

[pnroberts]

Oh yes. I'm sorry I forgot to respond. To my knowledge I haven't had my calcium tested.

[gimel]

Did you notice my question on calcium testing?

[pnroberts]

Thank you so much gimel. You have provided more help and information then any doctor has in the last 14 years.

I look forward to meeting with the recommended doctor and getting these things straightened out so I can start feeling better.

[gimel]

So your TPO ab test indicated Hashimoto's Thyroiditis.  Your TSH is higher than probably 95 % of the population that don't have thyroid problems.  TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones, Free T4 and Free T3.  Even though your Free T4 fell within the so-called "normal' range that does not mean it is adequate for you.  In addition, the doctor didn't even test for Free T3 which has been shown to correlate best with hypo symptoms, while Free T4 and TSH did not correlate at all.  Also, note these words from a good thyroid doctor.

"The free T3 is not as helpful in untreated persons as the free T4 because in the light of a rather low FT4 the body will convert more T4 to T3 to maintain thyroid effect as well as is possible. So the person with a rather low FT4 and high-in-range FT3 may still be hypothyroid. However, if the FT4 is below 1.3 and the FT3 is also rather low, say below 3.4 (range 2 to 4.4 at LabCorp) then its likely that hypothyroidism is the cause of a person's symptoms."

There is an extremely long list of hypothyroid symptoms compiled from many sources.  I can find each of the symptoms you listed on that list.  As I have often heard, "If it walks like a duck and squawks like a duck, most likely it is a duck". LOL   Your Endo just used the "Immaculate TSH Belief" and "Reference Range Endocrinolgy" and ignored your symptoms and the TPO ab test result, to deny it is most likely a duck and then he punted the ball to your PCP.  

I have no hope of anything different from that endo even if you tried to give him enough info to prove him wrong.  So I am sending you a PM with the info on the doctor in Randolph.  

[pnroberts]

I will take the name of the doctor in Randolph. The doctor sent me a message when I questioned him on all of this. This was his response:

Mr. Roberts.

It is very likely that you had hypothyroidism when you were in the Navy, but you do not have hypothyroidism now as we can see in your recent thyroid function tests. We diagnose hypothyroidism based on a high TSH, low free T4. Doing a reverse T3 will not be of any help. It has been suggested that this be checked in a thyroid disorder encountered in severely-ill patients (here we are talking about patients requiring hospitalization) but would not add anything to your diagnosis.

Secondly, your TPO antibodies are positive. This means that either you have family history of Hashimoto thyroiditis and therefore you are genetically predisposed to have it too or that in fact you have Hashimoto thyroiditis. This may in the future lead to overt hypothyroidism but your TSH is not elevated at this time and your free T4 is normal.

In summary, as I already mentioned, you do not have hypothyroidism but you are at risk of developing it in the future.

Regarding ferritin, vitamin B12, you can discuss with your primary care physician about it.


If you have further questions, I suggest you make an appointment to see us in the clinic again.

Lastly, please remember that symptoms typically described to be found in hypothyroidism are very non-specific. It is the role of your primary care physician to look for alternative diagnosis.

[Barb135]

I agree with gimel that the note from the endo's nurse is endo speak for "we know you feel like crap, but we aren't willing to do anything for you until your numbers are out of range..."

Have your cholesterol levels recently been tested?  High cholesterol is a symptom of hypothyroidism.  

Recommend you take gimel up on the offer for the new doctor is they are within reasonable traveling distance for you, as this doctor will keep you ill, even if he ever does decide you warrant treatment.

[gimel]

I meant to also mention that in view of your having kidney stones, have you been tested for calcium?

[gimel]

That is typical Endo speak.  They tend to be rigid about the "Immaculate TSH Belief' and the application of "Reference Range endocrinology", by which they will tell you that a test result that falls anywhere within its so-called "normal" range is adequate.  That is very wrong, due to the erroneous assumptions  used to establish the ranges.  Plus you haven't even been tested for the most important of the thyroid hormone tests, Free T3.  Free T3 has been shown to correlate best with hypo symptoms, while Free T4 and TSH did not correlate at all.

So the question for you is whether you want to present to your doctor information like the link I gave you above, and try to persuade him to treat you clinically as described.  If not, and you are willing to travel to Randolph, I have the name of a doctor that was recommended by a thyroid patient in that area.  

[pnroberts]

I forgot to mention I live in the Northeast Kingdom in VT. I also contacted the endo again asking what I needed to do and the nurse sent me this message:

Good morning .
As we discussed on the phone, you have a Normal TSH and free t4. You DO have positive antibodies.
Diagnosis = subclinical hypothyroidism, which means that there is a good chance that you may develop overt hypothyroidism in the future. However, the normal thyroid tests mean that it DOES NOT require treatment yet. The reccomended course of action would be to follow up in 6 months and repeat TSH, free T4.
If you wish, I can have Dr. ******** discuss it with you further by phone or my health online.


Funny thing is I was diagnosed 14 years ago so I am NOT looking at a NEW diagnosis. I've been on synthroid for years but no one will write a prescription for me now.

[pnroberts]

They also tested me for diabetes. My half brother is a type 1 diabetic, has Hashi's and also Addison's disease. My aunt and cousin are also hypothyroid.

My A1C was 5.3% my lab says under 5.7% is normal

Antibodies >1300 lab says <61 is normal

Free T4 was 1.2 lab range is 0.8-1.8

TSH was 3.56 lab range is 0.35-5.00

Honestly I stopped taking the synthroid because I travel alot for work. I was on a trip without it for a few months and when I came back to go to the doctor my numbers were normal so they said that I didn't need it. This is both from the VA and my primary care. That's when I went to this endo from where the results came from and they too are saying my numbers are normal and I don't need synthroid at this time. There's not a whole lot I can do if I can't get a doctor to give me a prescription for it. Good to know I'm not crazy though because they certainly are making me feel this way. This is the first time I have ever been tested for antibodies though in the 14 years I've been dealing with this.

[pnroberts]

They also tested me for diabetes. My half brother is a type 1 diabetic, has Hashi's and also Addison's disease. My aunt and cousin are also hypothyroid.

My A1C was 5.3% my lab says under 5.7% is normal

Antibodies >1300 lab says <61 is normal

Free T4 was 1.2 lab range is 0.8-1.8

TSH was 3.56 lab range is 0.35-5.00

Honestly I stopped taking the synthroid because I travel alot for work. I was on a trip without it for a few months and when I came back to go to the doctor my numbers were normal so they said that I didn't need it. This is both from the VA and my primary care. That's when I went to this endo from where the results came from and they too are saying my numbers are normal and I don't need synthroid at this time. There's not a whole lot I can do if I can't get a doctor to give me a prescription for it. Good to know I'm not crazy though because they certainly are making me feel this way. This is the first time I have ever been tested for antibodies though in the 14 years I've been dealing with this.

[gimel]

First thing to note is that TSH is a pituitary hormone that is affected by so many things that at best it is only an indicator, to be considered along with more important indicators such as symptoms and also levels of the biologically active thyroid hormones Free T4 and Free T3.  That said, your TSH is higher than typical for people without thyroid issues.  In addition, the TPO ab test result is positive for having Hashimoto's Thyroiditis.  With Hashi's the autoimmune system erroneously tags the thyroid gland as foreign to the body and produces antibodies to attack and eventually destroy the gland.  Even when the TPO ab result is high it frequently takes a while for the gland's output of thyroid hormone to drop below range; however, that doesn't preclude having hypo symptoms.  Symptoms actually correlate best with Free T3, and you were not even tested for that.  

Symptoms are actually due to inadequate levels of thyroid hormone in the tissues throughout your body.  Tissue thyroid levels can be different from serum thyroid levels.  Also there are other factors that affect tissue thyroid effects.  So just because your Free T4 is within range is obviously no guarantee of being symptom free.  

So what you need to do is to get some additional testing done.  Specifically I would suggest tests for Free T3, Free T4 (again), and Reverse T3.  Also, since hypo patients are so frequently low in the ranges for Vitamin D, B12 and ferritin those should be tested and supplemented as needed to optimize.  D should be about 55-60, B12 in the upper end of its range, and ferritin should be about 70 minimum.  Low levels of these can cause symptoms that mimic hypothyroidism.  Low D or low ferritin can adversely affect metabolism of thyroid hormone.  Also, low or high cortisol can adversely affect tissue thyroid effects.  So I suggest a diurnal saliva cortisol test, which consists of 4 samples taken during the day.  It may be difficult to get a doctor to do the saliva cortisol tests so you may have to use an on line source and pay for it yourself.  

The most important consideration for you is to find a good thyroid doctor.  By that I mean one that will treat clinically by testing and adjusting Free T4 and Free T3 as needed to relieve symptoms, without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  You can get some good insight from the following link written by a good thyroid doctor.  Also, if you will tell us your location, perhaps we can suggest a doctor that has been recommended by thyroid patients.  

http://www.hormonerestoration.com/Thyroid.html

[Barb135]

Sorry, but your numbers do NOT show that you don't have a thyroid problem... Your TPOab clearly shows that you have Hashimoto's Thyroiditis and your TSH is too high in the range, even though it's within most lab ranges of 0.4-4.5, which is outdated.  

Please provide the reference range for the FT4... ranges vary lab to lab and have to come from your own report.  Your FT4 looks to be well within most ranges we see, but it's best to compare with the range used by your own lab.  

Your doctor didn't even test Free T3, which is the hormone used by every cell in your body and has been shown to correlate best with symptoms.  You should insist on this test along with the Free T4 and TSH...

In the early stages of Hashimoto's, one can have periods of hyper, hypo or normal, before enough damage has been done by the antibodies to cause us to finally settle into a permanent state of hypo.  It's very possible that previously, you'd been hypo, then swung back into a normal state...

Just as it's possible to swing from various stages of hyper, hypo and normal, it's also possible for symptoms to be present for years before labs (TSH, FT4 and FT3) indicate that there's a problem, with Hashimoto's.  In your case, the high antibody is the clue your doctors should be looking at.

I have to ask why you stopped taking the Synthroid, as long as you have all the symptoms; perhaps, it would have helped alleviate them.  I strongly suggest you find a different doctor who will take the high antibody count seriously and will diagnose you with Hashimoto's as you should be and will be willing to treat symptoms, not just the TSH and FT4.