Very Confused and in desperate need for an answer!

[ThyroidPrincess]

I really need your help and would greatly appreciate any light you can shed on this. I have had hypothyroidism for years and have been taking 1.50 mcg for the past 5 years daily. About 4 months ago I began to get this strange, itchy, sunburn like rash down the sides of my neck that has now spread to my entire neck area. It seems to grow stronger near my period and then it wanes only now it appears to be here to stay. I have not made any changes to what I eat, wear or exposures to anything new. The rash is nowhere else. I have also noticed that I have a goiter under that area which you can feel (like a pad of fat around my neck that seems to be directly under the main part of the rash-thankfully it does not show yet, but I can feel it growing and it's swollen). I went to an endo and unfortunately I got one who doesn't think much outside the box and doesn't seem interested in even attempting to give my some answers about the rash. I feel that it's absolutely systemic and not something a dermatologist is going to be able to help me with (it's not like it turns into bumps that can be cultured as it remains flat and looks and feels like a sunburn). My family doctor feels that I am on the right track in believing that this strange itchy rash is due to the goiter or the three nodules they recently found while doing an ultrasound. My endo says that the nodules or goiter would not cause a rash (I think this is too coincidental for there to not be a correlation).

My family doctor has ordered an MRI with contrast because they also saw a few lymph nodes in my neck and I am a young breast cancer survivor (got BC at age 35). My Cortisol level is 3.9 (they are sending me for an ACTH stimulation test next week) and my Vitamin D level is 8 so they were very concerned there as well and put me on a 50,000 regimen once a week for a month. This rash is making me miserable. It's only on my neck and it flushes and itches and nothing is raised. I just feel that it must be related to my goiter and my thyroid. I am at my wits end here. Even my GP is researching the rash to see what he can come up with because nobody seems to know but I think it would be one heck of a coincidence if it was conveniently around the growing goiter that I now have that has nodules in it and not be related to my thyroid. I have never had this rash before and I have had hypothyroidism for years.

Am I crazy in thinking this rash is related to the nodules or the goiter? I am scared now thinking I have cancer again and that the rash is trying to tell me something essentially. Like it's pointing to the spot saying notice me...somethings wrong. Has anyone ever had this type of rash around their neck that does not scale or turn into sores but just looks really red and very itchy? I wondered if it was not related to my low cortisol level but now I am really feeling this has to do with my goiter and that scares me into thinking I will have to have it removed to get rid of this rash. I've tried Benadryl, millions of ointments and Cortisone cream and nothing helps. :(

I would greatly appreciate any help anyone can give me particularly the doctor here. Thank you and my apologies for the lengthy question.

Sincerely,
Tara

[feathersrforever]

I am so glad to have found this thread...I too am suffering with a rash, it is like a short cape around the top of my shoulders across both the front and back of my neck, the nape of my neck and in a line down the spine as well as my scalp itches. It is hot itchy and almost unbearable at times. I have had hyperthyroidism since 2007 and have had my thyroid removed in March of 2013 almost a year after having my thyroid removed is when the rash started.
I was put on prednisone for a month, a high dose to state 50 mg and reduced by 5 mg every 3 days till I was off it...that was 4 days ago  and it is starting all over again.aAthough  the prednisone  helped with the itchiness and the feeling of sunburn the rash never went away...back to the doctor tomorrow I will be taking a copy of this thread with me...hopefully he has some answers...will keep you posted

[ThyroidPrincess]

Thank you for your input. My rash is down both sides as well only now it seems to be all over my neck with a little going down to my chest area though mainly around my neck. It almost looks like I got sun burned with a necklace on or something. It's been nightmarish. I keep thinking this has to be related to either my low cortisol level or my thyroid issues. I have never had anything like this before. The worst part is whats right over my goiter. There is no raised part of this rash. It's completely flush with the skin and looks like a sunburn. Horrible itching. Having a dermatologist culture it would do me no good. It's not like you can grab anything really. It's very systemic and flushes through my skin. I was very disappointed with my endo dismissing any possibility of this strange rash having anything to do with my low cortisol, sudden growing goiter or the nodules they found!

Has anyone else had this? Did it go away with Cortisol therapy or what can I do? I am a little scared reading a few things where one woman said she didn't stop getting the rashes until she had her goiter and thyroid taken out with nodules. I don't want that kind of extreme so I am scared that I will be stuck with this creepy out of nowhere rash forever. I'm so tired. They are sending me for a ACTH test Tuesday because my Cortisol was low. I had a TSH level of 217 if you can believe it (they ran it twice to make sure there was no mistake). I finally got it to 2.5 for a long time and now suddenly it's on the move again going up to 12 TSH. They just ran it again and it moved to 6 so I am getting closer but I cab barely get out of bed. My Vitamin D was 8 so I know that's part of it. The rash is what scares me most. It's miserable and I'm afraid I will die with it. Please tell me this thing goes away. Has anyone had this suddenly?

[redheadaussie]

In a word YES! I have the same kind of rash except mine is on both sides and looks rather odd. I had a goitre and partial thyroidectomy in May 07, the rash was not too visible then but  it did follow the shape almost of my goitre...then in Dec 07 I had the right side taken out and since then the rash looks weird..like I was out in the sun with my chin on my chest then got sun burnt and you can see it on the sides of my neck.
  My GP thought it might have been lupus but no one seems to know. I think it is part of the auto-immune Hashimoto's I have.
   I used to pride myself on having a long graceful swan like white neck.So, I am able to empathise but unfortunately I have no idea either!
Cheers