Please help!! auto immune illness even w/ normal blood test results?

Posted by wonderwall12345 @wonderwall12345, Mar 10 1:29am

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.

Interested in more discussions like this? Go to the Autoimmune Diseases Support Group.

@johnbishop

Hi @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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I laughed out loud John. My grandmother convinced me I could not go to sleep unless and until I had learned something new that day. I never fail and I too am adding MR neurography today. I need that to image the nerves in my ribs which still scream when I take a deep breath. My first Rheumy was from Hospital for Special Surgery. Great place!!

Penn please keep us posted!! And
Best of luck that you learn something useful.

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@wonderwall12345

Hi 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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I’m a big enough person to congratulate your weight loss. Figuratively and literally big enough 🙄. I am testing out a strict low fat diet that is sorta kinda modeled on a Mediterranean diet. Except I don’t really cook. I’m down 8 but it has taken 3’weeks. 🙂

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@pb50

I’m a big enough person to congratulate your weight loss. Figuratively and literally big enough 🙄. I am testing out a strict low fat diet that is sorta kinda modeled on a Mediterranean diet. Except I don’t really cook. I’m down 8 but it has taken 3’weeks. 🙂

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Please post how that goes. I try to keep my eyes open for options. Low fat…..I’d consider, but I fear I’d stay ultra hungry. Healthy fats seems to satiate me. But, actually…..hmmmm….I may already be doing that! How much fat is allowed daily? I suspect mine is pretty low. Just avocado, egg, olive oil and lean poultry or fish.

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@celia16

Please post how that goes. I try to keep my eyes open for options. Low fat…..I’d consider, but I fear I’d stay ultra hungry. Healthy fats seems to satiate me. But, actually…..hmmmm….I may already be doing that! How much fat is allowed daily? I suspect mine is pretty low. Just avocado, egg, olive oil and lean poultry or fish.

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Here is my version tonight. Veggies only tonight, but other nights I might have a small turkey medallion or even a small pork tenderloin cooked sous vide.. the point is to use meat as an accent on the plate. Not a main event.

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@celia16

Please post how that goes. I try to keep my eyes open for options. Low fat…..I’d consider, but I fear I’d stay ultra hungry. Healthy fats seems to satiate me. But, actually…..hmmmm….I may already be doing that! How much fat is allowed daily? I suspect mine is pretty low. Just avocado, egg, olive oil and lean poultry or fish.

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The avocado is good fat
Egg is not. Shellfish is
Not. I don’t count. I just try to avoid total and saturated fats - or a minimal amount. I made some butter substitute that spreads and whips and sauces - made with refined coconut oil (refined so you don’t taste the coconut ). Once you get some ingredients you may not have in your pantry, it literally takes 10 mins to make. It does have fat, but it’s not animal fat - coconut is sort of like avocado fat. If you want the recipe let Me Know.

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@pb50

The avocado is good fat
Egg is not. Shellfish is
Not. I don’t count. I just try to avoid total and saturated fats - or a minimal amount. I made some butter substitute that spreads and whips and sauces - made with refined coconut oil (refined so you don’t taste the coconut ). Once you get some ingredients you may not have in your pantry, it literally takes 10 mins to make. It does have fat, but it’s not animal fat - coconut is sort of like avocado fat. If you want the recipe let Me Know.

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Ok. You can PM me a couple. I like plant based. I’d appreciate it!

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