Undiagnosed but experiencing "inflammatory" symptoms

[kristy1980]

Hi All,


I'm an otherwise fit, active 34 year old female who has been experiencing what I would describe as inflammatory symptoms for the past 7-8 years.  My main symptoms are a constant post-nasal drip, achy joints (particularly the neck and lower back), canker sores, & extreme tiredness.  My symptoms get significantly worse when I am stressed or have not slept well or enough however even when I am not stressed or am well rested, I still seem to have them, to a lesser degree, particularly the post nasal drip which is constant.  When my symptoms are really bad, my entire head feels full and inflamed, and I sneeze a lot.  Around this time I usually get a mouth full of sores, and am incredibly, debilitatingly tired.  I have been to countless doctors who cannot seem to figure out what is wrong.  Immune system issues run in my family, a grandma with type 1 diabetes, aunt with rheumatoid arthritis, uncle with lupus.  I myself had gestational diabetes during my pregnancy and take synthroid for hypothyroidism/hashimotos however I am not sure if these would be causing the issues. 


Anyway, I stumbled across this board as it seems that some of my symptoms fit into the PI bucket.  Being familiar with the disorder, I was hoping someone could weigh in with their thoughts based on my symptoms? 


Thanks in advance!

Kristy

[hlh]

Hi Kristy,

In general, it doesn't sound like you have a primary immunodeficiency to me. The most important thing you are lacking are recurrent infections, which is the main problem with folks with PI.

Most of your symptoms are quite common in the general population, and perhaps should be addressed one at a time. And most of your symptoms will get worse when you are tired/stressed. That is also pretty normal. So nothing is jumping out as a red flag for me.

Are you seeing an ENT to help with your sinus/sneezing issues? Drip is really really really common. Maybe an anti-inflammation nasal spray, allergy treatment, or just using a Netti pot would help you. Maybe you are sneezing because you have allergies (so treat), or like me, are sensitive to dust. Then an air cleaner in your home could be helpful. If your neck/lower back are achy, look at how you are standing/sitting/using the computer. Are you using good ergonomics? Are you doing enough core exercise? Most of us don't.

I would make sure you have regular follow-up with your primary care doctor especially because of the thyroid issues and your increased risk of diabetes and other inflammatory conditions, considering your family history. It is very easy to feel tired when your thyroid is not exactly right. Maybe you could check in with an endocrinologist to answer your questions, make sure you are doing the best thyroid replacement (this can be controversial) and to talk about your other risks.

Meanwhile, eat well, sleep well (almost none of us sleep enough.... chronic fatigue is common!) and get exercise. All of these will help your general fatigue. And if you mood is low or anxiety is high (which will exacerbate all of your symptoms), get some sunshine and exercise every day, and talk to your doctor about other approaches (meds, mindfulness/relaxation exercises, counseling etc...).

I think it can be better!

[glowing]

Hi Kristy,
Welcome to the forum. Have the doctors, who can't figure out what's wrong, given you a blood test to check for CVID?

Glo

[s162216]

Aug 28, 2015 6:14:44 GMT kristy1980 said:

Hi All,


I'm an otherwise fit, active 34 year old female who has been experiencing what I would describe as inflammatory symptoms for the past 7-8 years.  My main symptoms are a constant post-nasal drip, achy joints (particularly the neck and lower back), canker sores, & extreme tiredness.  My symptoms get significantly worse when I am stressed or have not slept well or enough however even when I am not stressed or am well rested, I still seem to have them, to a lesser degree, particularly the post nasal drip which is constant.  When my symptoms are really bad, my entire head feels full and inflamed, and I sneeze a lot.  Around this time I usually get a mouth full of sores, and am incredibly, debilitatingly tired.  I have been to countless doctors who cannot seem to figure out what is wrong.  Immune system issues run in my family, a grandma with type 1 diabetes, aunt with rheumatoid arthritis, uncle with lupus.  I myself had gestational diabetes during my pregnancy and take synthroid for hypothyroidism/hashimotos however I am not sure if these would be causing the issues. 


Anyway, I stumbled across this board as it seems that some of my symptoms fit into the PI bucket.  Being familiar with the disorder, I was hoping someone could weigh in with their thoughts based on my symptoms? 


Thanks in advance!

Kristy

Hi Kristy and welcome to the forum!

Looking at what you're describing I would actually agree with hlh in that it doesn't exactly sound like classical primary immunodeficiency. A lot of those symptoms are common in many different conditions, so if you're concerned that you might have an immunodeficiency then the first port of call should be to see if one can be ruled out; ask your doctor for a blood test to check your serum immunoglobulins, as in PID it's almost certain that at least one class of immunoglobulin will be low. Ask for a full blood count as well as this will check other aspects of the immune system, e.g white blood cells.

Having recurrent or deep seated infections is a classical red flag for PID, but even if you're not getting them it doesn't necessarily mean that you don't have it. When I was diagnosed with CVID for instance, I only had about 20% of the minimum recommended level of IgG, but surprisingly didn't get infections that much more than usual - it's not known why, but quite a lot of people with PID will be fine for years and then suddenly go downhill so I hope I'm well prepared for the future in case that every happens! With others though it appears to affect them from birth.

I also agree that you should check if your thyroid medication is working optimally, as tiredness, achy joints etc are classic symptoms of hypothyroidism.

I hope you manage to get to the bottom of your symptoms,

Sam.