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Please help!! auto immune illness even w/ normal blood test results?
Hi everyone! I have joined this community in a desperate bid for answers or guidance that my doctors seem unwilling to give. I feel as though I am going crazy and am being made to feel like a drama queen for insisting things aren’t right.
For context: I am 32F. 5'8 / 173cm and 80-83 kg / 176-182 lbs. I am caucasian. All medication I take is included below. I drink 3-4 times per month. I do not smoke or use recreational drugs. I eat healthy but do not eliminate any particular food groups from my diet at present. I am British but live in Belgium currently.
Since I was a teenager I always had bad bloating and constipation which caused me discomfort but never impacted my health further. I grew up in an old house with black mould in some rooms, including my bedroom. I was told this could have impacted my health but was never given any further details on how to look into this.
**September 2022:** I had bad constipation (I didn’t go to the bathroom for nine days) and was hospitalised. They found I had mesenteric adenitis (which is apparently rare in adults) but no one ever explained what caused the constipation (or the mesenteric adenitis for that matter). They did take blood tests at the time and everything came back normal. This included tests for celiac, thyroid, lactose intolerance. (I have posted my four-page blood test results from September 2022 below - they were originally in French so I have run them through Google Translate in order to hopefully make them easier to understand).
**November 2022:** I had a colonoscopy - they said there was some inflammation in my bowel and I also had mesenteric panniculitis. The doctor said there was no treatment and I just had to wait for the pain in my stomach to stop, which it did in late December 2022. No one could tell me what was causing my bowel issues and constipation. I was advised to keep a food diary and try to assess if I was intolerant to anything, but the constipation seemed very random (I eat salads most days, but suddenly one day I would eat a salad and my stomach would bloat and I would become constipated).
**December 2022:** The stomach pain stopped, but then a few weeks later I developed a cough and chest infection that lasted over three months. Two rounds of antibiotics did nothing to resolve it. I had a chest x-ray which showed a little bit of irritation/inflammation but nothing more serious. I once again had standard blood tests, which came back normal. My doctor said it could have been the result of a weakened immune system due to the stomach illnesses mentioned above.
**Winter 2023:** On several occasions, I have caught a cold from my partner in recent months. He would be sick for a day or two, but it would knock me out for over a week and ALWAYS developed into a cough (even if my partner hadn’t had a cough). For the last 15 years, EVERY TIME I get a cold or normal seasonal sickness, my glands will swell up. Now, I have noticed that as well as my glands swelling up, I will ALWAYS develop a cough.
When I was with family over **Christmas 2023**, I was sick again with a bad cold and cough and also developed a rash around my eyes that felt like sun burn (photo below). This has happened several times since December 2023. There was no change in my skincare during this time.
**Other symptoms:**
-Always cold
-Digestive issues (constipated)
-Cannot lose weight - I am currently 80-82 kg and 173 cm (technically overweight). I aimed to lose weight, first eating 1600 calories per day, then 1400, now 1200 (balanced macros) and walked 10-15k steps per day. My weight DOES NOT shift.
-I have genital herpes, which flare up much more frequently than is normal. Because of this, my doctor put me on preventative treatment a few years ago which he said should get rid of it all together, but it resurfaced less than a month later. I am particularly susceptible around the time of my period. I currently take 800 mg of acyclovir whenever the herpes flares up (usually 1x per 1-2 months).
In the last few months I have noticed an increase in the following symptoms:
-fatigue
-body aches
-dizzy spells
-more painful period cramps and stomach pains
-puffy face
Note: many of these could be seasonal and linked to the colds I've had, but I thought they were worth mentioning just in case.
I am scheduled to see a doctor soon, but in the past, once my test results come back normal, they tend not to continue investigating, no matter what my symptoms continue to be.
Any guidance you can provide is greatly appreciated, I am completely lost and desperate for some advice that might help end this ordeal.
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I'm so sorry for all you are going through! I hope you find answers soon!
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2 ReactionsVery difficult finding any type of relief but!!
People who have a severe case of Small Fiber Neuropathy, I am going for a test called MR NEUROGRAM. The test shows the nerves in your body. Hopefully I can get an appt. soon. I'm to Columbia Presbyterian Hospital NYC. Has anyone heard of this test or had this test.?
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2 ReactionsHi @penn, I haven't had an MR Neurography and thank you for helping me with my lifetime bucket list of learning something new every day. While you wait for those with experience having an MR Neurogram, I thought I would share what I have learned.
"What is the difference between MRI and MR neurogram?
Conventional MRIs can sometimes show nerve abnormalities, but MR neurography imaging is more sensitive, since it is specially tailored to image nerves. MR neurography uses advanced techniques to depict small nerves that may not be visualized on standard MRI exams."
--- MR Neurography at Hospital for Special Surgery | HSS: https://www.hss.edu/conditions_magnetic-resonance-neurography.asp
There is also a webinar that explains it's use - https://www.youtube.com/watch?v=i72PIJhQLcs
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7 ReactionsWOW!!!!!!!!!!!!!! John! THANK YOU SO MUCH!!
WISH I COULD GIVE YOU A HUG IN PERSON!
I couldn't get an appt. Hospital Special Surgery because I need Anastasia I can't stay still. They refused. I think I'll try again. Ordering Dr. Is making me so upset. I saw her on Mach 11 and I still don't have a date! She said it takes longer for Anastasia??? I've had that so may times and it didn't take long at all? Something has changed with her?? Does not keep me informed at all, so I call Radiology and NO ORDER HAS BEEN SENT IN! She said I have to have patience!!!! They don't even have a order at Columbia!
I have another Neuro. but she in NJ. I'm going to call tomorrow. As I said the Hi Surgery did so much damage to my nerves! All the Best John!
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5 ReactionsI have SFN, too, but unknown (idiopathic) cause. This is as confirmed with punch biopsy of calf and upper thigh. I never heard of MS Neurogram. I am hoping to get to a new neurologist for testing of MS and CIDP. SFN can impact autonomic nervous system which can affect lungs, heart and digestion.
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2 ReactionsThank you for this information on MR Neurogram! I think I need this and will ask my new neurologist about this.
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2 Reactions@wonderwall12345, you are definitely not alone and are not going crazy! You know you best and doctors are human and make mistakes. They really need to listen to you and your symptoms, not just look at “normal” blood results.
I have had many of your symptoms and health issues in my life. I am now a 54 year old female single parent of a teen son. Women’s health issues aren’t taken as seriously as they should be. Many doctors will chalk everything up to emotions/anxiety/depression or menstrual cycles/menopause and just throw you on antidepressants and make you feel like a hypochondriac. Don’t let this stop you from advocating for your health and quality of life!
I had teen gastrointestinal problems after eating (pain, bloating, etc. and stress aggravated everything). I was tested then and told I had inflammation of the duodenum/small intestine and given medication. My periods were always very heavy and extremely painful and took way too much ibuprofen to be able to function. I had a really bad case of chicken pox, mononucleosis (EBV) and somewhere through life/relationships I also picked up HSV1 and HSV2 herpes. These viruses lay dormant in your nervous system and get reactivated with illness and stress. My symptoms would also worsen around my monthly cycle.
It took me way too long to get diagnosed with Hashimoto’s thyroiditis and hypothyroidism. My “normal” TSH is below 1.0 and ideally around 0.3-0.4. I felt terrible when my TSH approached 2.0 and after having lobectomy due to thyroid nodule, my TSH was 4.0+ which made me a zombie and I couldn’t get out of bed. You do sound like you have symptoms tied to your thyroid (cold, weight, painful periods, fatigue, puffy face and dizzy). If you have heavy menstrual flow and clots, you should get a more extensive iron blood panel plus updated expanded thyroid panel (not just the normal blood tests). They need to dig deeper to see what is causing your symptoms. They should also check your thyroid autoantibodies to see if your body is attacking your thyroid.
Since you were in significant antibiotics for illnesses, you should build back up your healthy bacteria in your gastrointestinal system by taking a high quality, probiotic and eat foods that can also help rebuild your natural stomach flora. Be careful taking too much pain relievers as they can cause constipation and abdominal pain. Make sure to really hydrate yourself, too, and get good exercise to help keep things moving.
I pray you find the right medical care team to help you get answers sooner than I was able to. You want to diagnose and treat your conditions as soon as possible to prevent worsening symptoms. Thyroid is so important and impacts your entire body systems/organs. Good luck!
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1 Reaction@wonderwall12345, I also meant to mention I currently take Omeprazole (20mg) for gastritis/esophagitis (diagnosed via endoscopy), Levothyroxine (100 mcg) for hypothyroidism (now down to 0.3-0.4 TSH), antidepressants (Fluoxetine 20mg and Bupropion 75 mg), and Valacyclovir 500 mg for HSV2 (take as needed when symptoms flare…stress aggravates and reactivates but much less frequently than in the beginning…down to 2-4 times per year now). If you notice hair loss or alopecia areata, that is also tied to thyroid. The guy who does my hair noticed my circular patches missing. I also had your sunburn type facial rashes. Mine were around my mouth/chin. The first time it happened was after I had my eye/lip swell and took prednisone and went off it. My body attacked itself and my face/chin erupted in painful blisters/nerve pain. Now, dental work or stress causes just the sunburn rash around my moth/chin (looks exactly like your rash around your eyes). I think HSV herpes lying dormant gets activated and attacked my trigeminal nerve in my face which can also affect your eye area and cause this nerve rash.
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3 ReactionsHi everyone!
Quick update - I have had some progress on a few fronts. Firstly, my blood test results (attached below) from the doctor came back normal except that I had high levels of anti-TPO. My GP didn't tell me what this meant, just told me that I should be retested in the next few months to keep an eye on it. I have had to do my own research and it seems to indicate Hashimoto's? I'm not sure if having a high level of this once is enough for me to be diagnosed with Hashimoto's or if they need it to be elevated for a certain period of time before they diagnose me with that? I can see my other levels (TSH etc.) are normal, and research indicates this mean I could have Hashimoto's but without hypothyroidism at the moment - can anyone clarify?
Secondly, on the weight front - I followed the advice of a few people on here and eliminated gluten from my diet and began the anti-inflammatory diet (mediterranean diet), and MY GOD - I lost 5 kg / 11 pounds in the first week! More importantly, my digestion has been working much better and the bloat in my body and puffiness in my face have drastically reduced!
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9 ReactionsThat’s great news about getting some answers and your weight loss! Omg. Did you count calories too?
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