Avatar universal

is Hashimoto's causing all of this

Okay so before I get into everything let me list some of my medical history to get that out of the way.
-I'm a girl, age 17
-I have been diagnosed with inactive Hashimoto's ever since I was around 14
-My mom and her mom both have active Hashimoto's
-I have several nodules on my thyroid that appeared kind of randomly around the end of last year
-Largest nodule was like 0.7 mm or 0.7 cm (I forgot, but all I know is that it's the one that's just under the required size for a biopsy or something like that) but I'm pretty sure they've all gotten much bigger because I can feel them without searching around my neck now
-I have a goiter and I personally think it's visible if you look closely at my neck. Some people agree with me, some people think I'm being paranoid again.
-I'm supposed to get a bunch of blood tests done since last month I had an endo appointment and told the dr I was experiencing severe fatigue and couldn't get out of bed to do my schoolwork at all (I'm homeschooled), but I haven't gone yet because I have a really bad phobia of needles.
-My lab sheet basically says that I'm being tested for:
      *if Hashimoto's is now active
      *Graves Disease antibodies
      *hyperthyroidism separate from Graves Disease
      *celiac disease
      *paraganglioma and adenoma
      *cholesterol levels
-I tested positive for some autoimmune disorder gene
-I'm positive for the Epstein-Barr virus (but I don't think it's EBV again and I'll explain below)

The reason I joined this lovely website 20 mins ago is because ever since a few days ago, I've had this really gnarly looking neck rash that ranges in color from a light pink to a very angry red and is flat, itchy, and splotchy. And for some reason, stays ONLY over my thyroid and a some of the space around it. It's 100% not hives and I'm not sick either. It's not an allergic reaction to anything either. I also noticed I had some petechiae on my left forearm near the crease of my arm and both of my legs and feet, and when I went to pluck a stray eyebrow hair, I noticed I had a strange bruise on my forehead. I'm not a crazy sleeper, so I couldn't have injured myself while sleeping, and I haven't hurt myself at all so the petechiae and bruise aren't from physical trauma. And to top it all off, yesterday the center of my forehead was so tender to the touch I almost cried while I was applying moisturizer. As I mentioned earlier, I'm positive for EBV. I've sadly had mono twice, once in first grade after my swimming instructor got me sick and once in 8th grade when it randomly reactivated. The second time I had EBV was pretty different from your average mono experience. I had hives for almost 2 months that wouldn't go down no matter what I was prescribed (I was given 7 different types of antihistamines/steroids and none worked) and other than that I was extremely sleepy 24/7 and slept almost 18 hours each night. I honestly do not think that it's EBV again though because I don't have hives and although I'm super tired, it's not on the same level as mono. I really have zero clue as to what the hell is going on, and when I went on symptoma.com it told me I might have like 5 different types of leukemia or a myeloproliferative disease and that I'm going to die in like 3 months, so I dismissed that. I know I should definitely go to the doctor, but seeing as my rash went down today, my mom thinks I'm fine. Does anybody have any possible idea what's going on? I'm kind of freaking out.
3 Responses
Avatar universal
I've never heard of inactive Hashimoto's.   How were you diagnosed?  If tested at that time, please post results and reference ranges shown on the lab report.  
basically i tested positive for hashimoto’s antibodies but my T3/T4/TSH levels were all well in the normal range. i don’t have the lab reports to give you my exact levels sorry ://
1756321 tn?1547095325
Glandular fever aka infectious mono (caused by the Epstein-Barr virus) lists symptoms you mention such as severe fatigue, petachaie, purpura (looks like a bruise), allodynia (feeling pain by something that does not usually cause pain), skin rashes.
Avatar universal
Red_Star brought up a good point about EB, but Hashi's can also cause a rash and other symptoms you mention.   So I will address the likelihood of you being hypothyroid, since you have already been diagnosed as having Hashi's.  Perhaps by "inactive Hashimoto's" your doctor meant that you were positive for the Hashi's antibodies, but your thyroid hormone levels were still within the so-called "normal' range, so he did not prescribe thyroid med, Which left you with hypothyroid symptoms.  

In deciding on treatment, the first consideration should be symptoms that occur more frequently with hypothyroidism, which you have.  Second is confirmation with tests for the biologically active thyroid hormones, Free T4 and Free T3.  You should make sure you are tested for both Free T4 and Free T3 every time you go in for tests.   And with hypo symptoms, and Free T4 and Free T3 in the lower half of their ranges, there would be no reason to hold off on starting you on thyroid medication.   I won't go into detail, but there are many reasons that the ranges cannot be used as pass/fail decisions about treatment.  

If you were tested previously for Free T4 and Free T3, along with TSH, then you need to get a copy of the lab report and post results and reference ranges shown on the lab report so that we can help interpret and advise further.  It is a good idea to always get copies of your lab reports and write on there what meds/supplements you were taking and how you were feeling at the time.  These become very valuable references later.  Doctors are required to give you a copy upon request.    

If not previously tested for both Free T4 and Free T3, then you need to get those done.  Along with that you need to be tested for cortisol, Vitamin D, B12 and ferritin.  All are important in diagnosing and treating possible hypothyroidism.  In view of you having already diagnosed with Hashi's,  I am not really sure why your doctor feels the need to do all those other tests right now.   In my opinion it is much more important to confirm what I said about Free T4 and Free T3 levels, and get you started on thyroid med.  Also, if Vitamin D B12 and ferritin are deficient then you will need to supplement for those to optimize.  D should be at least 50 ng/mL, B12 in the upper end of the range, and ferritin should be at least 100.

I expect that you need to start taking thyroid med and get your Free T4 up to mid-range, and your Free T3 in the upper third of the range, and adjusted from there as needed to relieve symptoms.  Studies have shown that adding thyroid medication can result in a reduction of thyroid antibodies and can also make a big difference in your symptoms.

So you are going to have to get over your needle phobia and get those tests done.  You are also going to have to get tests done regularly for a while.   You may also find that you need a good thyroid doctor that will treat clinically, by testing and adjusting Free T4 and Free T3 levels as needed to relieve symptoms, rather than just based on lab test results.  Based on your experience so far with your doctor, I think it is very likely that he will not agree to treat clinically, as described.  If so, we may be able to help you find a good thyroid doctor in your area.  So for now please try to get your old lab test results and post them here, along with reference ranges, and also try to get the tests done that are recommended above, so that we can better help you through this.
Have an Answer?

You are reading content posted in the Thyroid Disorders Community

Top Thyroid Answerers
649848 tn?1534633700
Avatar universal
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
We tapped the CDC for information on what you need to know about radiation exposure
Endocrinologist Mark Lupo, MD, answers 10 questions about thyroid disorders and how to treat them
For people with Obsessive-Compulsive Disorder (OCD), the COVID-19 pandemic can be particularly challenging.
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Here’s how your baby’s growing in your body each week.
These common ADD/ADHD myths could already be hurting your child