Swollen Painful Hands Congenital Hypothyroidism

[Newa]

Hi, I hope someone can help...I have been secondary hypothyroid (pituitary based) all my life with less than no TSH.  Because of this doctors repeatedly reduced my thyroid making me very ill.  But I needed an Rx and last Oct. my new endo again reduced my thyroid. Within 3 months I was extremely ill.  This time I really crashed badly, could be my age 60 yr female.  I developed severe pain in my right wrist then swelling with terrible pain running up my forearm. I was able to get my thyroid (Nature-Throid as I have several allergies) and I increased to the amount where I formerly always felt ok even though my Free T 3 runs slightly higher than norm.  Soon my left arm began to hurt and swell, though not as bad as my right its still painful. In the mornings I am nearly completely unable to use my hands.  It's been 5 months and my hands are still swollen and painful (its not in the joints no redness or joint pain rheumatoid factor neg, c-reactive neg, ESR slightly high).  Aspirin is the only thing that helps a little.  My thyroid labs are normal.  I wear splints and Isotoner gloves at night to help control the swelling but so far no help.  In Jan when my worst symptoms began I kept a basal temp chart during Jan & Feb. my temp dropped as low as 93.2 degrees but stayed around 95 degrees and avg of daytime temps was 96.4 degrees. I had a saliva test and a couple of hormones were a little low but so far no change since supplementing. I've done metal chelation, candida cleanse, and vitamin supplements with no change in my hands.  That brings me back to hypothyroidism.  Do I need a larger dose for awhile to jolt myself (then decrease to maintenance).  Any ideas or help with this would be so appreciated.  Thank you

[Newa]

Hi Jade,  I have a genetic congenital hypothyroidism diagnosed shortly after my birth. My twin and other siblings have it too.  lucky i had good pediatrician. My pituitary does not produce any TSH so the only way I can get thyroid is through exogenous treatment. For nearly all my life I was on Proloid (dessicated porcine thyroid) but after my pediatrician I had a hard time getting any doctors to understand my condition as it is fairly rare. I've suffered miscarriages, lost my hair and eyebrows, and other awful symptoms because doctors don't always know what they're doing. Nature-throid is the most chemically similar to Proloid and I have had many problems whne doctors switched me to other types of thyroid.  Finally went through testing when they found the parathyroid tumor and I have a letter to all other doctors about my condition so they will prescribe the correct dose for me...and still one wanted to lower it saying it was too high, but I went through hell this last time it was lowered and still not recovering like I used to (probably my age now doesn't let me snap back as easily). I suffer terrible carpal tunnel due to the hypothyroidism and now my hands are staying swollen and painful.  It's been 5 months of misery.
Keep in mind if you have obvious symptoms there can be occult symptoms going on of damage to your various systems: vascular, ortho, etc.  The goal I try to achieve, when not being overruled by an idiot doctor who lives in a med lab book, is to be "optimum" even if according to their lab ranges this is high. If you have symptoms you're not getting enough...and their ranges could be wrong.  hope this long diatribe helps.  Good luck

[jade8187]

Hi,

I'm hypopit too, 46yrs, old and wondering whats next???  Currently replacing (sp...:P)  Thyroid hormone, all my other tests are in range, Next?

LOL!!!

Lots of ???  When were you dx?  How old were you?  How do you do it?

Being in range does'nt mean anything if our quality of life *****.  Range is a setting. 20 yrs. for my dx. and they still don't know how to treat it.

Have you ever been to a pituitary center?

[Newa]

Hi Barb, thanks for your comments. Honestly I've never seen the T3 shown like this either but it's whats on the lab results page.  I cut and pasted from my answer to gimel above.

the T3 looks like it is part of a panel...the 171 is the number immediately following the several test acronyms I listed that's all on the results given.

From the responses it looks like I need more testing before any answer to my mystery can be forthcoming.  As soon as I get the labs done I'll hopefully know more and can come back with some info.

[Newa]

Thanks for your answer, you're right about the testing issue.  I've started with a new doctor, a naturopath, so will work toward the testing as you suggest.  My cortisol was tested in the saliva test and it was within the low norm range. I've been prescribed DHEA which will also help raise that some to mid range.  The T4 range as written on the lab results paper is (0.61 - 1.12 ng/dL) it does have an asterisk with "please note new reference ranges due to changes in test methodology."  It does look like the T3 is part of a panel...the 171 is the number immediately following the several test acronyms I listed that's all on the results given.

I don't have diabetes, in fact the opposite, very low blood sugar, low blood pressure (89/54 - 106/72 range), Regular bloodwork doesn't show any anemia.  Tho a year ago I had a parathyroid tumor removed after suffering from hyperparathyroidism for approx 10 yrs and I have severe osteoporosis as a result.

I will take your advice and ask for the testing you listed when I see my dr next week.  thanks lots

[Barb135]

I see T3, TOT listed as a test run, I don't see a result (or am I reading your post wrong?); can you post that, with reference range, please?  Also please post the TBG result, with reference range.

I assume the COR 171 is Cortisol?

[gimel]

First, please confirm the range for Free T4.  I've never seen one quite like it.  Second, you mentioned Free T3, yet your test appears to be for Total T3, which is not nearly as revealing as Free T3, so I suggest that you make sure they test for Free T3, along with Free T4 in future testing.    I would also suggest that you get tested for  Reverse T3.  

Since you are taking Nature-Throid, I would expect your Free T3 to be higher in its range than Free T4.  So without Free T3 test data, it is hard to assess whether your low body temperature and swollen hands are due to insufficient thyroid hormone or if there is another problem.  Other problems that can contribute to low body temperature includes diabetes, anemia, and adrenal insufficiency.  

So the best suggestion I can offer is to go back and request testing for Free T3, Free T4, and Reverse T3 to see if thyroid appears to be the problem causing your low body temp and swollen hands.  Also, ask your doctor about testing for diabetes, ferritin, and a full iron test panel, and a test for cortisol levels.  Also, would be good to test for Vitamin D, and B12.

I know that more testing is not what you wanted to hear, but I really think more is needed as your next step.  Hopefully other members may have additional suggestions.

[Newa]

Thanks for responding.  Results of my labs are: Free T4 1.11 (range 0.61-1.12); T3, TOT, TBG, COR 171 (range 80-200) TSH is not tested. I take Nature-Throid not Armour 3.5 gr.

[gimel]

Need more info.   Please post your thyroid test results and their reference ranges shown on the lab report so that members can assess the adequacy of your testing and treatment.  Also, what daily dosage of Armour Thyroid are you taking?