Autoimmune Disorders Community
4.12k Members
Avatar universal

Losing hope for a diagnosis. Can someone help me find answers?

If I'm honest it's I've likely had acute symptoms for the last 7 years gradually getting worse. A little background, I'm a 27yr old female with diagnosised pcos, hypothyroidism, pcos induced insulin resistance, vitamin d deficiency, high testosterone/low estrogen, and acanthosis nigerians. Im on massive amounts of meds for everything and currently have the nexplanon implant for extreme ovarian cysts. My grandmother had grovers disease when she was younger and scleroderma,as well as a near death battle with bilious pemphigoid along with some other autoimmune issues.
It all began to drastically increase a year ago when my hair started to noticeably fall out a lot more and I was starting to be get rashes and strange scaly patches on my forearms, chest and face(mainly my nose, ears, cheeks) and couldn't function due to fatigue.  I visited my pcp and began a battery of blood work. Time after time everything was coming back normal except my vitamin d levels were extremely low and a slightly under active pituitary gland.
2 endocrinologists, 3 dermatologists and a specialty gynecologist later and I'm honestly no closer to figuring out the issue. We've tested for lupus, Cushing disease, and a number of other autoimmune and other disorders. We've done 2 punch biopsies of my scalp, the first showing most likely androgenic alopecia and sebhorric dermatitis, the second showing telogen effluvium(massive hair loss due to traumatic event, which I have not had). Every specialist I've seen has treated me like I'm a crazy person but I know My body and there is something WRONG.
I work in the medical field and I've been doing research nonstop for the last year it feels like and every time I feel like I found the answer the tests come back negative. My pcp is the only one who believes me, but we're at a bit if a dead end. When they took the last biopsy i had developed small lumps on scalp that would eventually develop a head and be filled with white pus once they were popped. They're extremely painful. They do not show developed features of connective tissue disease and no sign of bacterial infection or fungus.
I'm so lost and feeling beyond hopeless. I'm hoping someone can at least point me in the direction. I just need an answer to what's going on with my body.
2 Responses
1756321 tn?1547095325
I'll post my info over two answers as I have a lot to say lol.

Insulin resistance is the most common cause of PCOS.

A great article to check out...

Treatment for 4 Types of PCOS. Treat the Cause by Lara Briden: http://www.acubalance.ca/blog/which-pcos-type-are-you

I have had severe insulin resistance but no PCOS because of my poor appetite causing low calorie intake.

To quote Dr Lustig: "the one thing we know, categorically, that can mitigate chronic metabolic diseases is reduction in calories"

Those metabolic diseases - heart disease, lipid problems, hypertension, type 2 diabetes, dementia, cancer, polycystic ovarian syndrome, non-alcoholic fatty liver disease.  

I have none of these diseases.  I do however have acanthosis nigerians (from insulin resistance of course), hypothyroidism (both cellular hypothyroidism from insulin resistance and inflammation) and hashimoto's thyroiditis - the most common cause of hypothyroidism in developed countries), and had severe vitamin D deficiency (at the moment levels have dropped again due to stress lowering stomach acid and affecting absorption). Hypothyroidism is another cause of low stomach acid actually.

My insulin resistance has caused a hump on the back of my neck (looks like Cushing's but it's due to chronically high levels of insulin) and I did have a very high waist to hip ratio of 0.96. I got rid of all the sugar in my diet and that was the main factor to get the insulin down for me. Also exercise is another excellent way to help with insulin resistance. I also love intermittent fasting - leangains style.
1756321 tn?1547095325
Besides sorting out your insulin resistance, also check to see if you are treating your hypothyroidism optimally. So many people are suffering symptoms with "normal" labs.

TSH is not a thyroid hormone so adjusting dosage based on that lab is pretty much doomed to fail for many. And if you have pitutary issues this is also going to affect TSH. Look at your free T4 and free T3 levels. They are the actual thyroid hormones. I have my sweet spot for free T4 at 16 pmol/L (10 - 20 pmol/L). I don't have issues with T4 to T3 conversion but some people do and need to take T3 as well (either synthetic T3 or natural desiccated thyroid extract).

If you sort out your insulin resistance and optimally treat your thyroid issues you might find that explains all your symptoms. If not then keep looking. I have Hashimoto's thyroiditis, autoimmune pernicious anaemia, alopecia areta and vitiligo. My Hashi's showed up last though. Check out the other conditions that can show up with Hashimoto's thyroiditis...

List of diseases associated with Hashimoto's thyroiditis:

Have an Answer?
Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
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
This article will tell you more about strength training at home, giving you some options that require little to no equipment.
In You Can Prevent a Stroke, Dr. Joshua Yamamoto and Dr. Kristin Thomas help us understand what we can do to prevent a stroke.