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Hasimoto's Questions - I'm Sick, Need Help!
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This patient support community is for discussions relating to thyroid issues, goiter, Graves disease, Hashimoto's Thyroiditis, Human Growth Hormone (HGH), hyperthyroid, hypothyroid, metabolism, parathyroid, pituitary gland, thyroiditis, and thyroid Stimulating Hormone (TSH).

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Hasimoto's Questions - I'm Sick, Need Help!

Hello:

I'm a 44 year old male who was diagnosed originally with hypothyroid about 4 years ago.  At that time, local internist said it was nothing to worry about, but I needed .25 of Synthroid.  So I began to take it.  I don't have those original labs, and doctor has since had a stroke and no longer practicing.  No issues with the Synthroid and all of this was found on a routine physical.  I had no symptoms.  Over time, I started developing gastro problems, enough to send me down to Mayo.  Full physical workup.  GERD issue found via endoscope, Protonix prescribed.  That was October 2010.  They also had me see an endo, and he did the anti-body test for Hashi's and confirmed I have it.  Put me on .175 Synthorid.  Felt fine, no issues.  Then around April 2011, I started to just not feel good.  Dizzy spells, nausea, red eyes, confusion.  The symptoms seemed to come and go.  But as of Thanksgiving 2011, these same symptoms have come back with a vengence.  Below are my most recent lab results, which was last week.  I can tell you that I do feel better between 1.0 and 2.0 on the TSH, just based on past labs I've had.  

TSH - 4.24 (range is .40-4.5)
T3Free - 3.0 (range is 2.3 - 4.2)
T4 Free - 1.1 (0.8-1.8)

Overall, I just feel sick.  My ears ring all the time, mainly my left one.  I have a groggy headache ALL the time.  Low libido, depressed, anxiety, shaky.  I am currently on .88 dosage of Synthroid.  This is half the .175 I was taking up until June 2011 when I ran into similar symptoms and my TSH was at 0.03.  Apparently I was getting too much Synthorid so doctor told me to cut in half.  Been on that ever since.  At first it seemed to help, but now I'm worse than I ever was.  I need help.  I need some advice.  Am told by a user out on another site that my T3 might be too low?  I'm not converting well?  Other meds I take are Protonix (40mcg) and Lipator (10mcg).  My body feels great, I work out well, ride the bike hard for 10 miles 5 days a week, lift weights moderately.  6'1" and 207 pounds.  I have been gaining weight.  Two weeks ago, I was 201.  When these symptoms first hit me back around Thanskgiving, I actually dropped about 12 pounds and hovered around 190.  It has come back and then some.  But overall, my head feels sick.  This is not anxiety.  Something is wrong.  Any help or comments someone can provide would be very helpful to me.  I've got a career, wife, two kids.  I need help.  Never had a sonogram, even at Mayo.  Do I need one?  I have April 23 visit to Mayo scheduled.  

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13 Comments Post a Comment
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Avatar_f_tn
Get the book  The complete Thyroid Book by Kenneth Ain M.D
Director of the University of Kentucky Thyroid Clinic and learn about your immune system turning on itself, and attacking your thyroid as a foreign object; I was diagnosed with Hashimotos many years ago; my thyroid developed a goiter on it, which continued to enlarge over a period of years. You may never go through this, but get the book to educate yourself.
wawee919  
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Avatar_m_tn
Will do.  Is there anything I can do to alleviate these symptoms?  How do my labs look at this point?
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Avatar_m_tn
Of course with Hashi's, as your thyroid gland is being destroyed, your normal thyroid production decreases and has to be supplemented with increasing amounts of medication, adequate to bring your Free T3 to a level that relieves symptoms.  It appears that you reached that stage, even when taking the 175 mcg of T4.  The reason may have been that you  were not adequately converting the T4 into T3.  It's too bad that you don't have lab results for Free T3 and Free T4 from that time, to confirm your Free T3 level.

Since your doctor reduced your meds based on your suppressed TSH, you now feel worse than ever.  Suppressed TSH does not mean that you have become hyper.  You are hyper only if having hyper symptoms due to excessive thyroid hormone.  You are having symptoms now because both your Free T3 and Free T4 are too low in their ranges.   Many of our members, myself included, report that symptom relief for them required that Free T3 was adjusted into the upper third of its range and Free T4 adjusted to around the middle of its range.

Just for information I had a TSH of about .05 for well over 25 years without ever having hyper symptoms.  In fact I continued having lingering hypo symptoms until learning about the importance of Free T3 here on this Forum.  I got mine tested and confirmed as low in the range, even though I was taking 200 mcg of T4.  Convinced doctor to switch me to a T4/T3 combo med and after some tweaking my Free T3 is 3.9 (range of 2.3 - 4.2, and Free T4 is .84 (range of .60 - 1.50), and I feel best ever.

A good thyroid doctor will treat a hypo patient clinically by testing and adjusting Free T3 and Free T4 as necessary to relieve symptoms without being constrained by resultant TSH levels.  Symptom relief should be all important, not just test results.  You can get some insight into clinical treatment from this letter written by a good thyroid doctor for patients that he sometimes consults with from a distance.  The letter is then sent to the PCP of the patient to help guide treatment.

http://hormonerestoration.com/files/ThyroidPMD.pdf

So to me it is obvious that you need to increase meds.  Based on your prior experience, I suggest that you should ask about adding a NDT type med, so that you are getting both T4 and T3.  You should also find out if the doctor is going to be wiling to treat you clinically as described in the letter.  If not, then you will ultimately need to find a good thyroid doctor that will do so.

Another thing to consider is to get tested for Vitamin D and B12.  If female, I would have also suggested ferritin and a full iron test panel; however, low iron problems occur far less frequently with men.  Another useful test would be selenium, which, along with iron,  reportedly helps conversion of T4 to T3.

I'm not sure that you have explored your current alternative adequately to need to go to Mayo at this time.  It appears to me that you need to raise your Free T3 enough to relieve symptoms, and raise your Free T4 adequately to support the necessary Free T3 levels.  If the additional testing shows deficiencies, then you will also need to supplement for those.
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Avatar_m_tn
Date TSH Free T3 Free T4 Lab
4-7-2011 0.16 N/A N/A Quest Diagnostics
7-5-2011 3.78 2.3 0.9 Quest Diagnostics
10-2-2011 3.67 N/A N/A Quest Diagnostics
11-17-2011 1.55 N/A 1.2 Quest Diagnostics
1-14-2011 3.74 N/A N/A Quest Diagnostics
3-9-2011 4.24 3.0 1.1 Quest Diagnostics

These are the labs I have.  N/A means FreeT3 and T4 were chosen not to be tested.  Why I don't know.  This help at all?
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Avatar_m_tn
based on my current T3 value I initially provided, where do you "believe" it should be at?
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Avatar_m_tn
I assume that you meant for the last two labs to be from 2012, not 2011.  So, based on those test results, it appears to me that the problem is low Free T3.  Look at the test results from right after you started feeling bad in April, 2011.  Your Free T3 was at the bottom of the range.  That is definitely hypo country.  After that, they were mainly testing for TSH, which does not reveal anything much of interest, when already taking thyroid meds.  

Even your latest Free T3 test is too low in the range.  I say that because the range is far too broad.  The ranges for Free T3 and Free T4 have never been corrected like done by the AACE for TSH, over 8 years ago.  The functional ranges should be more like the upper half of the current ranges.   We hear from many members with hypo symptoms, yet their doctor tells them that their test results are in the so-called "normal' ranges so it can't be thyroid related.  But when we examine the results, their free T3 and Free T4 are in the low end of the range.

It would not matter so much about the ranges being incorrect if the doctors treated clinically as I described above.  So that is why I suggested that you request the additional testing, increased meds, and see if you can persuade your doctor to treat clinically.  If it were me, I would do all that before going to the Mayo clinic.  I know they have a great reputation, but when it comes to thyroid, I have no assurance they will be any different than most doctors who have been taught only the "Immaculate TSH Belief" and use "Reference Range Endocrinology".

I hope you had a chance to read through the link I gave you above.  Here is a preliminary copy of another section from the web site of the doctor that wrote that letter.  I have great respect for his knowledge and experience.

http://www.hormonerestoration.com/Thyroid.html
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Avatar_m_tn
Just to be clear, now that you are on thyroid meds, forget TSH.  It means nothing for you at this point.  The doctor will continue to test for it.  It is like a security blanket for them.  

As for levels of Free T3 and Free T4, recall the statement in the letter above.
"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."

So the correct target is whatever level at which your symptoms are relieved and you feel well.
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1139187_tn?1355710247
I spoke to cold thyroid briefly and he showed me a lab that looked something like this

tsh 0.16
ft3  2.3  (range 2.3 -4. something)
ft4  1.0

Is it correct to assume he may need to "lower" the synthroid a drop and then add in some ft3, or increase both?
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Avatar_m_tn
I don't think there is any need to lower the Synthroid.  In fact it could stand to be tweaked a bit higher.  To do that he can increase the Synthroid a bit and add add a T3 source, like Cytomel.  Or, alternatively he could just add some NDT type med, like Armour Thyroid or Nature-Throid. That would accomplish raising both Free T3 and Free T4 levels.  The most important part is to get that Free T3 level higher in the range as necessary to relieve symptoms.

One thing that I think would be good to rule in/out would be the possibility of adrenal issues.  This can best be done with 24 hour saliva cortisol tests.  Some doctors won't run that test so the next best is  24 hour urine cortisol tests.

Another thing that would be good to have done is an ultrasound test for nodules.

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Avatar_m_tn
So if my numbers are below, where do you believe the T3Free should be sitting at.  

TSH - 4.24 (range is .40-4.5)
T3Free - 3.0 (range is 2.3 - 4.2)
T4 Free - 1.1 (0.8-1.8)
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649848_tn?1357751184
Your TSH is too high (AACE set the range for TSH at 0.3-3.0, about 9 yrs ago, but very few labs/doctors use it).  I also believe that your FT3 and FT4 are a bit too low.  

I find it impossible to understand why doctors will double a med dose or, in your case, cut it in 1/2, all at once; that's too much of a change, all at once.  Medication dosages should be made in very small increments, each time.

You could stay with the 88 mcg and add a few mcg of cytomel or generic T3, to bring up your FT 3 levels.  I find that it doesn't really matter all that much what my TSH and FT4 are, as long as FT3 is adequate.  Symptoms tend to correlate best with FT3.

An alternative to adding T3 to your present dosage is to switch to a desiccated hormone; however, you are already on the T4, so at this point, it might just be easier to add T3 to it, then tweak as needed.
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Avatar_m_tn
First you mention that you have GERD and high cholesterol (assuming since you're taking Lipitor).  Both of these can be associated with Hypo.  My wife's acid reflux dramatically reduced when her thyroid meds were closer to optimum.  (also her asthma meds were able to be cut back as well).  Other people have reported their cholesterol levels were helped as well.

I'm just saying that it may be possible that if you get your thyroid under control and properly balanced, you may find your cholesterol and GERD issue be reduced or helped.

Secondly you I think were asking what levels you "should" be at.  This varies from person to person but it seems a better target to shoot for is the FT4 in the middle of the range AND the FT3 in the UPPER 1/3 of the range. Here is what that would look like for you with the ranges you provided.

T3Free - 3.0 (range is 2.3 - 4.2)  Upper 1/3 starts at 3.6 and you are testing at 3.0.  You are currently at 37% of the range not 66%

T4 Free - 1.1 (0.8-1.8) Middle of the range is 1.3 and you are currently testing at 1.1 You are currently testing at 30% of the range not 50%

Since you reported feeling pretty well on higher dose of synthoid (175 vs 88) AND your FT4 are still pretty low in the range,  I would tend to think that increasing your synthroid may be something to consider first since you are currently on it.  Keep monitoring your FT4 until mid range and see what happens to your FT3 levels AND how you feel.  You may need to increase the synthroid again or you may have to add a T3 med.

I have no problem with Natural Dissected thyroid but since you have some history of feeling OK at least for a while on synthoird you may want to try that first.

The bottom line I think everyone here so far agrees with is that you appear to need an increase in thyroid medication.  Exactly how much and of what is a decision you and your Dr need to make.  Like I said every person has an optimum level of FT4 and FT3 that allows them to feel good.  YOU need to find that out. And it is sometimes a long and frustrating road to travel making adjustments and retesting over and over.  Stepping up slowly is key.
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1139187_tn?1355710247
Agreed on the Gerd!,,,
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