I have Multiple AutoImmune Diseases, including fibromyalgia, T2 diabetes, severe hypothyroidism, IBS, and rheumetoid arthritis....and asthma, allergies, xerostomia, (may be sjogren's syndrome) , and a heart condition.....
Currently I have a deviated septum, and an enlarged turbinate, requiring surgery. But cannot get the surgery because my TSH level is at 16. I am taking Synthroid 0.075 mg along with Benadryl (due to allergic reactions to synthroid).
It has taken me 10 years to get my TSH level from 127. down to 16, all the while fighting to keep the hives at some sort of management. I have been struggling more to get it below 16 in the past 6 months, and it just stays at 16 - 17. Is there anyway I can lower this TSH with some kind of vitamin cocktail?
In addition to needing the sinus surgery, I also need to get some surgery done to the thyroid, as the thyroid is grossly enlarged. I have had an ultrasound done on the thyroid, and I was told it is multi-nodule.
Any help or advice would be greatly appreciated....
Once I get the TSH level down, I can get the surgery, and hopefully stop this awful burning post nasal drip, and maybe the seering pain in my neck will finally go away...
Thanks for listening, hope to hear back shortly...
From the multiple problems that you describe, it sounds like you have had a problem with one or more chronic infections that caused thyroiditis, pancreatitis, rheumatoid arthritis, asthma and more (my wife actually had this complex multi-symptom condition). In many cases chronic infections can be attributed to the FMS, thyroiditis, pancreatitis, rheumatoid arthritis, etc. For example, in my wife's case it was a combination of viruses and cell wall deficient bacteria that were causing the problem and long-term antimicrobial treatment allowed her to completely recover (and her thyroid and islet cells recovered their production of hormones as well), although she occasionally has relapses when she gets run-down physically.
I would reconsider the sinus surgery if I were you, because it may be due to an undiagnosed infection. In that case surgery would be of limited help, so I would be careful before making that decision to rule out other possibilities.
Thank you so much for replying to me.
I do know that there is something going totally wrong with my system, but for some reason I cannot get a doctor to do anything about it.
I strongly feel that I am speaking a foreign language, one that my doctors dont seem to understand....
I will definately talk to my doctor about testing for " cell wall deficient bacteria " and treating it with "long-term antimicrobial treatment" (I will try to, as she sometimes hears me, but doesnt listen to me....
But I also have another thing I would love your advice on :
I have been in agony in the past 7 months.....
-I have seen 19 doctors, 32 doctor appts, (trying to find a doctor who will listen!)
-8 sets of blood work, a CT scan, a chest x-ray, thyroid ultrasound, holter monitor, heart ultrasound, dental xrays,
-Tested for strep throat 4X, pernicious anemia (neg), cancers (neg), bells palsy (pos), thrush (pos), post nasal drip (pos), diabetes (dont know if its type 2, pre or just hypoglycemia), Xerostomia, and now testing for sjogren's syndrome.
-I have been prescribed Clarithromycin, nystatin, omnaris, cotridin, cloxacillin, tamiflu, betaderm cream, tylenol #3, synthroid from .025 to .050 to .075 and back down to .050.,
-Presciption drugs on: cyclobenzaprine (flexeril) 10 mg; ventolin; cymbalta 30mg; Levothyroxine 0.050
Okay so thats a summary of my health history in the past 7 months...
I think I may have uncovered something.... and I hope maybe I am onto something.
12 years ago I was first diagnosed with Hypothyroidism. My TSH at the time was 127, and the doctor was stunned that I was still able to function. I was always told by my doctor that the exhaustion I felt, the chills.....and so on, was blamed on everything else besides a thyroid condition. Anyhow, within days of being on Synthroid, I had started to get hives, big ones that itched horribly. So I had to stop the synthroid, and was put on P.D. thyroid (dessicated thyroid). Again another reaction. We have tried different medications, but always the same result. So the doctor said that I have to go on Synthroid, and stay on long enough for the hives to get a little troublesome, and then go off, that the synthroid was bringing down the dangerous levels of TSH, and bringing that down was more important, that we could deal with the hives by staying on Benadryl.
I did at one time get referred to an endocrinologist, but my family doctor talked to this specialist, and the specialist said I was most likely allergic to the dye in the meds. My specialist appt was then cancelled. I was so upset! I think my doctor did not give ALL the pertinant information...
So off and on for the next 10 or so years, Here I am
I am wondering if everything that has been happening in the past month is due to a drug allergy, to Synthroid.
For 7 months I have had an extremely sore mouth. My tongue always felt swollen, but didnt appear swollen, and the tongue ended up with deep painful grooves in it. I was getting canker sores, and cracks in the corner of my mouth. My neck was getting immensely painful, right under the chin, then the pain went down to the area around the adam's apple. My thyroid felt extremely sore and squishy. I ended up with insomnia, getting 0 - 4 hours of sleep per night for weeks. Then the depression hit, like I was on the verge of tears every waking moment.
While I was on the Synthroid .025 I felt somewhat okay. At .050 the symptoms above began to get worse. Then the synthroid was up to .075 the symptoms were full blown. Even though I was only taking the .075 every couple days (my memory is very poor).
So I decided to completely stop the Synthroid, and now a week or so later, Those symptoms are disappearing. My throat feels 100% better now, My mouth feels normal, and the depression is lifting. I could feel a weight being lifted off my shoulders, the anxiety and stress feel so much better!!!
So my questions are.....
Is the Synthroid to blame for all of these symptoms I have been having?
Can this allergic reaction cause me to be oversensitive to other allergies (shellfish), and to develop a new peanut allergy (literally overnight) ?
With this enlarged turbinate I was told that its caused by an allergy, and I have been going crazy trying to find the source of the allergy.
Gosh I hope this is the answer I have been looking for.
I want to thank you again, for taking your time to read my posts, and give me such valuable advice ! I appreciate it immensely!
It's not clear to me whether the Synthroid was causing the problem or whether your body was rejecting part of it and that is what was causing the problem. There are also some known affects of other drugs (for example, antidepressants), ions (for example, certain minerals), vitamins, herbs, etc. on Synthroid. In either case, it appears to not be giving you the thyroid help you need.
You were prescribed antibiotics, but the question that I have is whether this would have been sufficient to treat, for example, suspected thyroid bacterial chronic infections. Nystatin is useful for GI fungal problems, but it is not a systemic drug.
Thank you for replying to me again. I so greatly appreciate it !!!! I really wish I could see you in person... have you as a Primary Physician!!!
My throat felt great for two days, and was back again. I do find that the symptoms came back as soon as the stress level rises. Its unbelievable what stress does to a persons system.
I seen my cardiologist yesterday and now he's sending me for a nuclear heart stress test, a MIBI Stress/Rest Scan.... hmmm another test.
I also see a 3rd ENT tomorrow morning. I just hope and pray that he actually examines me, and gives me some answers of what is going on in the thoat/neck region.
The 1st ENT closed my file on me, because of the heart problem, and also he does the sinus surgery while the patient is awake!!! Only uses local anaesthesia, somehow freezing the area only???? Dont know, dont want to know what is going on during the surgery.
The 2nd ENT wasn't actually an ENT. He was a plastic surgeon. But listed as an ENT.
Yes, he can fix the sinuses, but I want to know about the throat. and the hearing loss.
I do know you advised me to reconsider the sinus surgery and I do not understand this. Since the accident, (I slammed a holiday trailer door on my nose) I find that I am more sensitive to co-existing allergies, and have developed a Peanut Allergy literally overnight.
Did this allergy happen because of the sinus problems, and wont surgery correct it? What will happen if I dont get the septum fixed? Will I develop more allergies because of it?
I will talk to my doctor about trying me on another thyroid medication, next time I see her. I just went for a new set of bloodwork about the thyroid.
How do I ask her to run tests for "a combination of viruses and cell wall deficient bacteria and long-term antimicrobial treatment? I dont want to sound like a know it all - and She isnt too receptive if I ask for certain tests or to send me to specialists that I think would be beneficial to me. I am trying to be very proactive in my health care, but find I either dont ask the proper question, or know how to get what I need.....
I am soooo confused!
Hello again Dr. Nicolson :)
I have seen a 3rd ENT today, and he was FABULOUS! He thoroughly examined my ears, nose and throat!! sounds kind of funny, but the first 2 didn't.
Anyhow, he is like you (Fabulous!) and also advised me NOT to get the septum fixed, to leave well enough alone. Hearing this from you, and then in person with another doctor, confirmed it for me. I actually felt HOPE for the first time in 7 months! NO SURGERY !!!
thank goodness for that one. Also everything came back normal, nothing to worry about in the throat. He thinks it could be from fibromyalgia. Guess I'll find out in 12 days!
I couldnt believe how my new doctor got me into see another ENT in such a short time, and to see an endocrinologist so quickly too. Usually I wait 4 months or more!
I also have another specialist appointment coming up, to an Endocrinologist, on Feb 1st.
I hope that one goes as well as this one, finding a medication besides Synthroid will be a blessing, and finally being taught what this pre-diabetes is all about. All I know is I'm to eat more protein, less carb, but how much is a loss for me.
But patience is a virtue.
Got to find where they sell this stuff called 'PATIENCE"
all I know...
lately I am not a Patient Patient HAHAHA
have a great night.
Let me correct your impression. I am a medical researcher and professor emeritus of internal medicine and laboratory pathology. I am not a practitioner making dx and treatment decisions, although physicians often come to me for advice on various subjects. I only make suggestions as to where you and your physician might look for answers.
As to your questions about sinus surgery, I did not suggest that you completely rule out surgery, especially if there was structural damage that can only be repaired by surgery, but many patients have sinus surgery that don't need surgery because they have severe sinus infections and the surgery in the end doesn't help them much with their infections. You have appeared to get some good advice on this from your recent physician visit.
As to the types of infections that cause systemic problems (not just sinus but also thyroiditis and other infections that could account for many of your symptoms), I can direct you to our website immed.org under Clinical Testing. There you will find tests for some of the most common chronic infections. You can also find some information on diet on our website--you are correct that a high sugar diet can make your condition worse.
Good day to you!
I received my blood test results, and I am so frustrated!!!
On Sept 10/09 my levothyroxine was upped to .050 TSH=16
On Oct 21/09 it was upped to .075 TSH= 13.44
On Jan 14/10 blood tests TSH = 14.07 T3=3.9 T4=9.7
no matter what we do, the TSH will not go down. Stronger meds made it go higher.
But the stronger the meds, the more difficulties I have. I get extreme mood swings, feelings of rage, major depression, feeling hopeless, feeling doomed. I get such awful insomnia that some nights Im lucky to get a few hours of sleep.
I've been having major pain, in my neck, back, all joints, chest and throat. I get nauseated, occasionally vomit, and get daily headaches, sometimes turning into migraines.
I've now been prescribed Cymbalta, Remeron, and the synthroid down to .050.
I am so frustrated, and find myself on the verge of tears all day, and night.
Why do you think the Synthroid is not lowering my TSH and causing such havoc on my body, both physically and emotionally????
I look forward to any and all advice...
As I mentioned previously, thyroiditis, pancreatitis and other glandular infections can cause major disruptions of the endrocrine hormone systems, resulting in over and/or under production of endrocrine hormones. You should be checked for this possibility.
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