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Thyroid Problems/Anti-TPO ABS/THYROGLOBULN AB levels, incomplete diagnosis


QUESTION: Good day, Dr. I apologize in advance for the length and detail of this message, but my GP is telling me I am not ill and I know something is wrong.
BACKGROUND: I haven't been well and feel a have a chronic illness for over a year now and am quite often in bed. I am 54, female with a history of hypothyroidism and high blood pressure (both treated for the last 10-15 yrs, urinary incontinence for same length of time (history of severe bladder infections & had big babies) and difficulty swallowing (lump in throat feeling)), asthma and allergies/skin rashes all my life. About 3 yrs ago I started taking an anti-convulsant (abnormal EEG-unrelated issue) oxycarbazepine 300 mg/day. After some time I seemed to become much more sensitive to direct sun..easily burning my skin, and worsening the ever-present "eczema" rashes already on my arms/hands,etc, that were exposed to the sun. I wasn't too concerned because I knew one of my medications I was on at the time increased sun sensitivity, so I would cover up better before going out. Over the course of a year or so, the rash worsened on my arms, and was quite bad, but since throughout my life the condition was continually and constantly retreating and flaring in intensity it was not at all a cause for alarm even though very uncomfortable. Around this same time, (but unrelated event, I believe) I developed a small irritated bump on my thumb, and simultaneously, an abcessed tooth, both of which became very bad infections with the thumb requiring extended hospital stay, surgery and aggressive IV treatment.  ,after this, I discovered, by chance, that I  (I mention these infections only because they were so severe, unexpected, and mostly unexplained and I don't really know what is relevant at this point. I detail the sun/rash bit because it SEEMS, to me anyway, that it COULD be related to to my critical issues which follow next.) I should mention that sometime after this I discovered by accident that I was allergic to the anticonvulsant - since rash improved significantly when stopped taking it.)

However, the sun-sensitivity continued to get worse and expanded to include extreme heat sensitivity, whether caused by the sun, exertion alone or hot/ warm water, along w/ very extreme fatigue, joint pain, muscle spasms, visual light sensitivity, weakness-general and in arms/legs, tingling/numbness in my foot and occasionally twitching of toes. Also at this time incontinence began to include bowels. All in this last paragraph I think developed mostly over about a 3-or-so-yr period. The first striking event that occurred during light work outside on a warm day (76 degF) day the heat from the exertion made me so ill (I kept hydrated) I never lost consciousness, but became so weak I couldn't walk or even sit up or talk. I made it inside but barely before collapsing on the floor-i was panting, couldn't control my bowels or move a muscle and speech a little slurred when I tried to talk- I'm pretty sure I should have called the ambulance-but I was far to weak to make that happen. After about 3-4 hours I could stand and walk 10 feet to my bed where I slept for 2 straight days.

The second event felt like the initial stages of what I just described except it was "caught" before it became so severe. {In the interim, a couple more months had passed and weakness, joint pain/ muscle spasms increased, incontinecies got worse fatigue became exhaustion and could barely function at all. I had seen several drs.(skin biopsy showed psoriasis; dermatologist DX was psoriatic arthritis, but  rheumatologist disagreed but thought the new med I was on, methotrexate, was approp. She ran many blood tests which showed: no lupus, no hepatitis, no celiac, no Lyme's, TSH 3rd generate was 0.867 but ANTI-TPO ABS was 333 and THYROGLOBULIN AB was >3000(AA), ESR was 25, uric acid 7.2. I was referred to an endocrinologist.}

This second event, occurred after just leaving cool a environment and walking outside on a hot day to take a delayed break in building only about 50 ft away. Remembering that overall I am weak anyway, by the time I make inside I so weak I can't stand and I feel like I can't get enough air. When first aid arrived my blood pressure was 80/60; I slept for a couple hours at emergency there and drove home unable to return.

After being mostly in bed for 3-4 months and with increasing doses of methotrexate I began to get more strength back, joint pain significantly improved, incontinence is still a big problem. But heat and sun and exertion (though to a lesser extent now) are still major problems - I can't go outside anymore- it's not worth it. I come home feeling so weak sometimes I sleep for 2 days. I feel I will never be myself again and cannot function anywhere near what I did just 5 yes ago. I don't have insurance and I might be able to see an endocrinologist through charity service if I can find one. I haven't worked for over 6 mos. The GP Said I don't need to worry about the abnormal thyroid bloodwork because that was taken over six mos ago and my TSH is normal and that since I can still eat not to worry about the lump in my throat (she can't feel anything during exam of my throat area). I get so frustrated with feeling this way so long and her dismissive attitude I sometimes cry in her office. Now she says I need counseling.  Somebody opined that I might have MS. Do you have any thoughts on all this? I hope it makes sense.
Thank you very much.

ANSWER: Hello kathy,
Warm welcome to you! and thank u for your patience waiting these days for my reply!
As somebody had opined you, this could be Multiple Sclerosis. The intolerence to heat/sun is called Uhthoff's phenomenon. Here the patient feels extreme fatigue or worsening of neurological symptoms when exposed to sun/heat. This could even trigger urinary and bowel incontinence in such conditions. But for concluding the diagnosis of multiple sclerosis we may need to do certain lab investigations. Because there are other conditons which show Uhthoff's phenomenon, like Eaton-Lambert syndrome, Myasthenia gravis etc. So you have to undergo EEG, CT scan and MRI for investigating Multiple sclerosis.

Thanking You!

Take care. Have a great day. bye.

---------- FOLLOW-UP ----------

QUESTION: Thank you, Dr.  Your response was prompt especially considering the length and detail included. I am very appreciative and pleased with your response and will look into these conditions/tests. One last question, if I may:
Do you think the very high numbers of my Anti-TPO ABS and Thyroglobulin AB levels mentioned in the third paragraph are a concern even though my Dr. Said my TSH levels are normal (especially since I have difficulty swallowing)?

Once again, thank you SO much for your help with this.
Have a good day.

Hi kathy,
Nice to hear from you.
Since you have been already taking the thyroid supplements for your hypothyroid condition, these TPO antibody and thyroglobulin antibody levels are insignificant. Their increasing value shows ongoing inflammation inside your body which keeps destroying thyroid tissue. It can nevere be lowered by taking any medications. In all these kind of patients antibody levels go on increasing. But how fast they show an increase gives us the idea how aggressive is the inflammation inside your body. But dont worry I have seen patients with their TPO antibody level more than 1000.

But at this time its very important to know that these antibodies are capable of influencing other organs along with thyroid. So some studies have shown their role in many auto-immune conditions like multiple sclerosis.

Hope I have cleared your doubt.

Take care. Have agreat day. Bye.

Thyroid Problems

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Dr.Shrinidhi Kulkarni


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KIMS, Bangalore

MBBS, Intership in Internal Medicine

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