neck itching and burning with Hashimotos

[shellchuga]

Blood tests show that I have Hashimoto's as does my twin sister.  My sister's doctor chose to medicate her a couple of years ago.  My doctors keep telling me that because my other thyroid numbers are in normal range they do not want to medicate.  I have common symptoms but I guess they don't feel they are serious enough.  I asked one doctor what I needed to wait for and she said symptoms like weight gain or hair loss.  Back in Oct. I began dealing with this terrible itching and burning on the front of my neck over the thyroid area and outward.  The sensation was so deep and uncomfortable and that scratching gave no relief.  I saw my family doc who sent me to a dermatalogist.  The Derm. drew blood, ran tests, checked everything, had me try topical ointments and even treated me with med for shingles just in case it was an odd form of.  Nothing showed up on testing and the Derm. was convinced it was from the thyroid.  After 8 weeks the itching and pain went away BUT it started back up 3 days ago.  I will finally see the Endocrin. at the end of the week....had to wait this long to get in.  When I saw a resident in his office she told me they wouldn't medicate if other numbers in normal range.  So... what am I to do?  I feel like I could go crazy with this burning and itching.  I can't wear anything even close to my neck..shirts or necklace and the water in the shower even makes it burn more.  Any thoughts?  Is this from my thyroid?  Is there any documentation of this problem that I could show my doctor?  Are there any meds that may help?  Please help before I go crazy!!

[gimel]

Good general information.  I only wanted to point out that TSH is basically a useless test when already taking thyroid meds.  And if you adjust Free T3 and Free T4 as necessary to relieve symptoms, then your TSH will just be a result of that.  You really cannot target a TSH level independently of Free T3 and Free T4.  

[CinColo]

See any doctor you can that is open to treating you based on how you feel.  Endocrinologists are not necessarily the best doctors for treating Hashimoto's.  Many see internal medicine docs, PCPs, or even chiropractors.  Technically, functional MDs and holistic doctors are the optimum choice.  However, I know that's not possible for everyone since many have insurance that won't cover those doctors.  Look under sites such as Topmd.com and use filters to search for those that specialize in treating thyroid disease.  They need to test your antibodies, Free T3, Free T4, and TSH.  You can also test Reverse T3 to get a good starting level for it.  (I've had Hashimoto's for 17 years).  Just because your levels are "in range" does not mean you're optimal.  Most feel best with a TSH around 1.0.  Free T3 should be around 3.75 and Free T4 (1.5)-of course those are using certain lab ranges.  The upper 1/3 range is a good way to monitor that.  I get the itchy neck very rarely and only since I developed a hormone producing nodule.    

[gimel]

When you have the test results please post here so that we can see if testing was adequate and see if anything shows.  Any doctor can order those tests.  I think that with all that you have gone through, most doctors could be persuaded to run those tests.  If required you can also be aggressive and push for the tests.  

[jaybeecee47]

Thank you for your response. My daughter has thyroid disease and is being treated for it.  When I saw the neurologist, she did blood work and checked my thyroid values.  When I talked to her recently, she said that all of my thyroid values were fine.  She is sending me the results of all of my blood tests.  What kind of Dr. can order the tests that you mentioned.  Do you have to have other indicators before you can have those tests?

[gimel]

In case your curiosity does lead you to thyroid testing, I suggest that you get tested for the antibodies of Hashi's.  For that, two tests are required, Thyroid Peroxidase antibodies and Thyroglobulin antibodies.  The two tests are usually  listed as TPO ab and TG ab.  In addition it would be good to test for TSH, Free T3 and Free T4 (not the same as Total T3 and Total T4).

[jaybeecee47]

For a year and a half, I have had terrible itching and burning on my neck.  Sometimes to quiet it down, I have to put ice on it.  I have also bathed with baking soda and oatmeal.  Over a year ago about the time this started, I had started taking folic acid and B12 and stopped taking Gabapentin, 300 mg every night.  A Dr. had diagnosed me with fibromyalgia, but when I was found to be deficient in folic acid and B 12 and started taking supplements, the pain in my body stopped, so I was weaned off of the Gabapentin.  Then I started having this pain and itching in my neck.  So uncontrollable I thought I was going crazy.  I went to a dermatologist who thought that since I had stopped the Gabapentin, the nerves in my neck were firing and that this caused the itch and pain.  He put me back on the Gabapentin, 300 mg at night and also on Clobetasol Lotion for the itching.  Things seemed to improve but as time went by, I thought that more could be done as I had some sores on my arms where I had scratched when itching.  I went back to the dermatologist recently and told him that I didn't think the current treatment was working.  He said to stop taking the Gabapentin, take Seraquel (for a short duration) and continue with the clobetasol.  I don't know why, but I stopped the Gabapentin without tapering it and started the other at bedtime.  Within about 5 days, I was beyond myself with anxiety, my thoughts rushing, and not able to stop moving, tapping, etc.  I called the dermatologist and told him that I couldn't take the Seraquel.  His nurse said that I should since it was the only thing they had to treat me.  So, I tapered off the Seraquel and took neither drug but within a few days, the burning and itching were so terrible so I started taking the 300 mg Gabapentin at bedtime again.  I am finally getting better.  I really wish I had a diagnosis.  One use for Gabapentin is for neuropathic pain.

I was referred by my personal physician to a Neurologist and she did an MRI of my brain and blood work.  She found that I was anemic but nothing that indicated a reason for the itching and the mri was fine.

I have stopped taking the B12, folic acid, and seraquel.  I am taking the gabapentin and it is helping.  If anyone has the same symptoms or a diagnosis, I'd really like to hear from them.  I have scratched my arms open although they don't really itch much.  Luckily, I haven't opened my neck skin.  Seraquel is an anti psychotic for schizophrenia although I don't have that diagnosis, they have found that it helps with itching and neuropathies.(I believe).  I'll continue to take the gabapentin, use the clobetasol and bathe with oatmeal and baking soda until I have a diagnosis and/or a different medication that works.

I am curious about the thyroid thing as mentioned above by others in the forum.

[Barb135]

This is a very old thread and neither of the 2 previous poster have been active on the forum since this thread, so I doubt you will get a response; however, it's good to have information in case someone else has a similar issue.

[busybeess]

I had this crazy burning ,itching rash it was making me insane, felt like it was deep in my nerves,  I went from  doctor to doctor searching but no solutions....I had my  thryroid looked fine to them, I was put on plant based  hormones which did not help the issue,  Finally I found a MD with a ND  background he ran tests for heavy metal I had high lead, where I got it have no idea I did work in old brownstone building it was restored but were the pipes anyhow heavy metal can do this I was put on EDTA for chelation at alternative clinic to get this stuff out of my body and it worked. I also did an elimination diet apparently allergy tests are only 50% accuarate, which made sense to me because blood allergy test sbowed I had no allergies I knew for a fact I was allergic to citus, wheat and dairy  

Also I took high doses of vitamin C when I first started the crazy itching because it stopped the itching in its tracks. There are also parasites also mites that dermatolgologist overlook and they can be easily treated it feel like you are being itten ,.

[cz29]

It's been awhile since you posted, maybe you've gotten more help since then?
I too get a red itchy neck and have Hashimotos.  My neck only bothers me in the winter.  This is the 3rd winter with itchy red neck and when it started it was only months later that I started having thyroid pain and was eventually diagnosed with Hashimotos.
Last winter, the first time treating it, my dr. prescribed 2.5% hydrocortizone--2x a day for 2 weeks.  It went right away and never really bothered me again.  This year, the prescription doesnt seem to work as well--but keeps it at bay.  I avoid things around my neck, including my housecoat and blankets.
Cant seem to get Dr. to say it could be related to Hashimotos, but all over the blogs people seem to have this same problem---it must be related.
If you haven't found a Dr. to give you medication, you should do a bunch of online research.  There are conflicting views as to what levels Dr.s will medicate. Then look for a thyroid specialist--must be thyroid specialist.
I have an excellent Dr who goes around the country teaching--he seems to follow the more agressive figures to keep my levels low.  I feel much better, though, no weight loss.  This Dr found I was misdiagnosed by my 2nd opinion Dr who was ready to do surgery to remove what he thougt was a thyroglossal duct cyst.  Thankfully, the surgery was delayed and i started to feel uncomfortable with the whole thing.  My GYN referred me to this Dr. who only takes patients by referral...and he did his own ultrasound with his own machine right there and showed me everything.  The surgeon never even did a 2nd ultrasound--just took the one from the 1st opinion Dr's tech at the hospital who told me he'd never seen this cyst and didn't really know exactly where on my neck to get pictures.
So, though your neck might always give you  some itching  problems, it's important to get the right Thyroid Dr.
And, maybe 2.5% cortizone will work for you?  Good luck