Cannot find a cause

[itchyintenn]

As I am setting here typing this question this evening, I have just taken my second Benadryl .  This itching and hives have been going on for almost two years.  I am a nurse, I have done some research and I do not know myself what is causing all of this.  I am a 8 year cancer survivor of NHL having been treated with RCHOP and radiation. I found out that a year after my cancer, I developed Hoshimoto's disease. I was treated with Synthyroid. I was diagnosed by my PCP first with then a referral to Endo. After a year under Endo and remaining stable for a year, I was sent back to my PCP for regular treatment and med refills and lab checks. About two years ago, I developed this sensation as if someone put a red hot poker to my back, and within minutes I am covered in hives and I am violently itching. The pain subsides after the breakout, but the hives and itching are unbearable until Benadryl, 50 mg. to finally make it stop or subside.  Well, for a year, I tried to watch what I eat, watch lotions, laundry detergent, what I ate, where I went, etc. I told my PCP about it several times, so a referral to an allergist, I knew he would have the answer.  Well, a funny thing, I was told to stop any allergy meds a week prior to my visit.  I started breaking out, all over and by the time the allergist got in the room, I had just about climbed the walls, it was so bad I was starting to remove clothing.  He said as he looked at it:" this is not caused from allergies, this is auto-immune response to something that is going on."  I elaborated on my cancer and my thyroid and he ran some tests but it all came back insignificant.  He told me that he could not do anything and that maybe I should go back and see my oncologist. So my oncologist ran a PET scan and I am still cancer free and he thought the itching and hives maybe related to something different. I have since gone back to my PCP and she does not know what to do either.  I never know when these attacks are going to happen.  I am a nurse in a large doctor's office and one day I started breaking out there and my provider gave me an injection of dexamethasone.  These injections now, have come twice and she has been able to look at this rash and she does not know what to think.  I have been tested for lupus, for that's what all of them have come up with, but the test has come back neg. I feel like I have bought stock in Benadryl.  I take a daily antihistamine, I switch from Allegra to Claritin. I have not tried the Zantac, but this condition is miserable.  I started tonight again after I got home .  Nothing specific triggers it.  It starts the same every time, a burning sensation, then this horrible itching and rash.  I just don't know where to go from here. I did not know that my thyroid might cause this condition.  I have had several ultrasounds and I have thyroid nodules but the Endo thinks they are too small to biopsy.  I just want rid of whatever is causing this.  I would love some opinions,  My levels have been good, recently moved up to 100mcg because of my high intolerance to cold.  I am having labs drawn this week, any that anyone can give me an idea about what I might need drawn?   I am truly greatful  for anyone that might be able to help give me some answers.  I don't even know what kind of doctor to see that might be able to help.  Thank you,  I am, Itchy in Tennessee!

[gimel]

Not sure about the itching and Synthroid.  I would like to make sure you are aware that many hypothyroid patients find that their body does not adequately convert the T4 med to T3, causing them to remain hypo.  Free T3 is the biologically active thyroid hormone that largely regulates metabolism in all the cells in your body.  

TSH has only a weak correlation with either of the thyroid hormones, Free T3 or Free T4.  Also, TSH has a negligible correlation with hypo symptoms.   So TSH should never be used to adjust thyroid med dosage.  If you want to confirm all this, please read my paper in the following link.

https://thyroiduk.org/further-reading/managing-the-total-thyroid-process/

If you doctor does not medicate s you based on TSH level,  you will remain hypothyroid.   If that is the cae, I suggest giving the doctor a copy of the link and ask to be treated clinically, as described in the paper.  

You should make sure to be tested for Free T3, Free T4, Vitamin D, B12 and ferritin.  If the doctor resists, you should insist on all of those.   If you can get those done, please post results and we will be happy to assess further.  

[Red_Star]

Studies report that as many as 57.4% of patients with hives (urticaria) have the presence of thyroid antibodies.

"In conditions of chronic urticaria, thyroid antibodies are not only indicators of chronic inflammation, but they appear to play a role in the disease process. In most cases, improvement of urticaria with thyroxine replacement hormone suggests that chronic thyroid inflammation may initiate a hypersensitivity reaction and an underlying thyroid hormone deficiency.

However, rarely, patients with chronic urticaria have undiagnosed conditions of Graves' disease. Researchers in the UK have reported two instances in which patients with chronic urticaria and TPO antibodies responded well to the anti-thyroid drug carbimazole." - Thyroid Peroxidase Antibodies - TPO Autoantibodies and Their Significance by Elaine Moore.


"In about half of patients with chronic idiopathic hives, the explanation is that body's immune system is, in a sense, overactive. The urticaria is "autoimmune". The immune system is attacking the normal tissues of the body and causing hives as a result. We know certain urticaria sufferers have other signs of autoimmune problems. Some have autoimmune thyroid disease, vitiligo, swollen joints, or certain abnormalities in the blood (especially the ANA test).

A new treatment has recently emerged for autoimmune urticaria. This is the use of hydroxychloroquine, a drug originally used for malaria. In a clinical trial 83% improved or cleared completely when used for three months or more." - American Osteopathic College of Dermatology - Urticaria

[gimel]

Sorry, I have a type in this sentence.  It should read, "If the doctor medicates you based on TSH level, you will remain hypothyroid."

[susanmetzger]

I have been on Synthyroid 88 for 3 years after having my thyroid removed due to nodules. They were not cancerous. Last week, I started itching on my hands and feet. There are no bumps, or rash. This makes me think it is my Synthyroid. It usually stops in the late afternoon. My doctor tested my TSH and it was high at 5.7. I am to go back in a week and have blood work done again. I am thinking it is the Synthyroid as I have stopped all vitamins. Has anyone else found the Synthroid to cause itching and if so what did they do?

[Barb135]

I know you're due for new labs, but could you please post your last ones, so we can see what your actual thyroid hormone levels were? Be sure to include reference ranges, as those vary lab to lab and have to come from your own report.  

Have you tried any thyroid medication, other than Synthroid?  What dosage were you on when this pain/itching started?  Pill type medications have fillers and binders in them and occasionally we find members who have reactions to those.  If they change brands/manufacturers, the problem often goes away.  Additionally, thyroid hormone pills are color coded by dosage, and some members are allergic to the dyes.  Synthroid 50 mcg are white, so you might ask your doctor prescribe 2 of those instead of the 100 mcg and see if that helps. I would think, however, that if it were your thyroid med, you'd have the reaction every day, since you take the med every day.  Of course, it's always worth a try to change.

Have you noticed what clothing you're wearing when these attacks start?  Perhaps there's a fabric or even a label attached to the fabric or thread used to sew a garment that causes the issue.

There could be a number of causes, ranging from a vitamin/mineral supplement you take to something you eat occasionally.

What tests were done that ruled out Lupus?  Do you have the butterfly shaped rash on your cheeks that's common in lupus or any of the other symptoms?