thyroid and/or allergy?

[wreck51]

I have been sick for 5 years (immediately following a total hysterectomy and hypercritical year in '05).  Initially my symptoms started with itching of my upper arms (from shoulder to elbow), migraine and neck and upper back pain/spasms.  2 years ago a whole new set of symptoms emerged, in my mouth with burning, swelling of tongue and tissues of my cheeks/lips and sores on roof of mouth and under my tongue.  Included in the symptoms is sore throat and dry mouth.  Last year my lip was biopsied for autoimmune (mother died of sarcoidosis...other autoimmune disorders run in family).  The results showed "suggestive of sjogren's" but I've seen 3 rheumatologists and there is doubt in that diagnosis.  Allergies keep coming up in conversations, but I have over these many years experimented with eliminating gluten and dairy from my diet and watching for reactions with certain foods and there is no obvious correlation. There seems to be a lack of trust in the allergy blood work's reliability among the doctors I've discussed this with, as well as the  consensus that a food allergy would be more general than those centralized around my mouth, throat and face.  What seems vague but somewhat thematic is the worst reactions often seem to happen around the time I am taking my thyroid meds.  I have been on thyroid supplementation for almost 20 years, starting with synthroid and moving to armour thyroid for about 15 years of the time.  But since all of this has occurred I have tried various types of thyroid medications...often times in the switch, the itching returns but subsides (perhaps as levels balance?)...Currently I am taking a compounded form of synthetic thyroid (55mcg of T4/12.5 mcg T3 in a.m. and 55 mcg of T4 in afternoon) and the compounding pharmacist says there is nothing allergenic in the formula itself.  Is it possible that my thyroid gland itself is causing these symptoms?  There are 2 nodules that we have been "watching" for the past 2 1/2 years...and I wonder if the function or dysfunction of the gland itself would cause these symptoms.  I am pretty well spent after many, many appointments with specialists I am no closer to answers than I was 5 years ago.  Any feedback or input you might have would be greatly appreciated.

[laura1967]

So happy to hear you have a good primary Dr who is willing to treat the symptoms and not the numbers. Yes...please let me know your next panel of results! :)

[TamraW]

You're welcome. You might want to consider adding virgin coconut oil to your list. I have tried Diflucan to no avail. Here's where I bought my oil, but you can get it from any health food store. www.naturesflavors.com

I take one tablespoon daily. I have not had a yeast problem since starting the coconut oil and going gluten free. People with yeast issues and Hashi commonly have leaky gut syndrome. Read about it here: http://www.leakygut.co.uk/symptoms.htm

Also, this book goes into detail about leaky gut and its affect on the thyroid antibodies: www.thyroidbook.com

:) Tamra

[wreck51]

Thanks so much for your input.  My primary care doctor is all over treating me with the proper amount of thyroid med and will prescribe what works rather than stay tethered to the lab work only.  I will check my numbers with the next labs and see where they fall within your guidelines.  I have innumerable autoimmune blood work...I suspect that I have probably had the TGab and TPOab, but will definitely check through my records and ask for it if not. Thus far any/all autoimmune blood work has shown negative, including that for Sjogren's.  Again, my primary care doc is pretty awesome about partnering with me to discover what's happening.  As far as allergies I have been off many of the named allergens that Tamra suggested for months at a time, with no effect on my symptoms...adding to that list soy.  The last resort treatment from my rhuematologist is to try a round of diflucan for yeast...candida has absolutely been considered and Nystatin has had marginal impact.  I will most likely try to start the diflucan this month.  Your kindness in working through this with me is very much appreciated, I will look into your added points.  I trust God as my Healer, just learning to trust that more these days :)...Blessings to you.

[laura1967]

Personally I take my full dosage of T4 med in the morning. My T3 med is spit into 2 dosages. I have never heard of a Dr telling a patient to split their T4 med....It is a long acting med and takes a couple of weeks to even start to build up in the body.
IF you have Hashimoto's, then it puts your "optimal" lab ranges into a whole other area. So it is critical to know where your Free T4 and Free T3 results are at. Because you are on a T3 med, your TSH will be very supressed and make you look hyper, so your Dr has to go by your Free's. Optimal ranges for Free T4 is mid normal and Free T3 is high normal range, for Hashi patients. If you are kept in the low normal ranges, you will remain sick with hypo symptoms and your body will not have a chance to heal at all.
When I am very reactive with the antibodies acting up, I have had tiny mouth blister here and there.
Don't settle for halfway treatment.....learn and know what tests to ask for and how to read your results yourself. That way you can approach your Dr and have an opinion and take part in your treatment plan.  :)

[TamraW]

This website and book explains a lot: http://www.thyroidbook.com/

Yes, it is important to know if you have Hashimoto's. Hashi is an auto-immune disease that attacks the thyroid. It is not simply a thyroid condition. Doctors are so focused on treating thyroid levels, they ignore the underlying auto-immunity and factors that may be contributing to the antibody flareups.

Gluten is a large factor to many with Hashi. I wonder if you were gluten-free long enough. Yeast can also be to blame and can cause the mouth ulcers, etc. Many Hashis have an underlying yeast issue and are prone to yeast infections. I drink one tbsp virgin coconut oil per night from www.naturesflavors.com to combat my yeast. It has helped immensely. I no longer get mouth ulcers/thrush.

Caffeine, dairy, yeast, gluten, corn, green tea, iodine, can cause antibodies to attack, depending on the Hashi individual. It is important to get the TGab and TPOab and determine if Hashi is to blame. And, yes, Sjrogen's can accompany Hashi. Very commonly we have two or more auto-immunities.

:) Tamra

[wreck51]

Hashimoto's and hypothyroid seem to be so closely related to my drs. that it is given a nod and response that the treatments would be the same so there's no point in specifically "diagnosing" the Hashimoto's.  The filler is lite olive oil and it was on my endocrinologist's advise that I do the 55 mcg in the afternoon...but I'd been advised to do that originally by my primary care doc, so maybe the endo was just complying.  Would it make a difference if I took it all at one time?

[laura1967]

First question: Do you have Hashimoto's? This would explain a lot of the weird symptoms.
Second question: Why do you split your T4 dosage into 2 dosages? This is usually done only with T3 meds.
What filler is being used in your compounded thyroid meds?