Long overdue diagnosis(s)

I finally found out helpful information about what has been causing many problems I'd associated my thyroid with incorrectly. I'm so fortunate to have been referred to a Rheumatologist who noticed many things wrong at first glance that my other doctors either didn't notice, or more likely couldn't have cared less about, and I am so appreciative of his concern and care.

I have severe AIG deficiency which levels conclude I have no antibodies to fight against mucus stuff. It's new to me so I'm not too familiar with the proper terminology but it means I have an auto immune deficiency in my mucocous membranes and it explains my lung, digestive, sinus, ear, allergies to nearly everything at all times, and I also have Sjogren's Syndrome causing severe dryness of eyes, mouth and other tissue which doesn't e AIG deficiency any better and Osteoarthritis and severe muscle tension.

This specialist was literally shocked that none of the doctors I've seen ever did anything for me and he was asking me what my other doctors had done and when they done them and I kept saying never until he asked why they didn't refer me then and I was tearful (relief tears) and said they didn't believe me and said I was making it all up and or flat out lying for attention. He then asked me why my current Doctor who had taken my blood resulting in my referral to him didn't tell me about my vitamin D deficiency and low B12 levels (Which thankfully this was pointed out by members on here so I wasn't too shocked) because my Vit D was probably contributing to several of my symptoms especially my back muscle issues.

He has me set up with a new Endo Doctor because of Adrenal insufficiency, and a GI doctor for celiac disease which he was able to see my issues in my first initial visit and further blood tests confirmed his reason for concern.

I cannot express how grateful I am even though my diagnosis(s) are not exactly ideal by way of curing or being a positive result but I can now be assured that I'm first and foremost not making it up and unable to realize my fault, but my symptoms and my problems can be managed to a degree and my brain can now comprehend and understand.

I still have my GI and Endo appointments coming up which will give me only more of an understanding of my health and as I learn more and my specialists advise me on what can be done to manage my symptoms I know that I'll have the knowledge and tools to manage what I can and the diet part is going to no doubt be the hardest and most frustrating part but as all of us on here looking for answers I know the battle is well worth the aggravation because we already have suffered for so long because we had no definitive answers and that in itself is beyond any aggravation a possible relief could possibly bring forth.

I also have Renault's syndrome which I forgot to mention above and that explains so much as well and it's not surprising why I was convinced even though my thyroid levels were coming back as normal yet my many symptoms I still had were persistent and very bothersome. My reverse T3 came back high but as many others have explained even the Rheumatologist said that doctors don't use that test or the results but considering his multiple findings that explain away everything causing my problems I'm not concerned.

I hope my story has helped others by way of suggestions to their doctors to run certain tests or at least advise them of referral to specialists that could diagnose the symptoms because I know how hard it is to get answers and are assured of one thing only which is our thyroid is in fact "broken" so to speak and because it causes so many symptoms we cannot be convinced that it's not to blame irregardless of test results and that is quite possibly the cruelest thing a doctor can do because only they are able to give us access to proper medical care and due to pure ignorance prolong suffering.

We know our bodies and because of Dr. Hermitanio of Aurora Bay Health in Marinette, Wisconsin who went above and beyond his responsibility of being a Rheumatologist and treating my positive ANA result, and did what my previous doctors didn't, CARED about the fact he could see and feel my suffering yet had resigned myself to dealing with it that I didn't even bring up my many symptoms UNTIL he inquired about his visual and general observations.

My most recent and only 2nd visit with him he again kept mentioning the fact he couldn't understand WHY no other Doctor did anything for me and he's Asian so his English is somewhat broken and that makes his comments even more significant because it's phrased in a way that's like DUH.

He literally said " Why you doctor's no care" " Why you doctor's no send you to specialist" " Why they no do their job"

He was rather frustrated at the fact he was left to do the many referrals for me on my first visit to him ( GI, ENDO, HEART, plus lots of blood work and a lot more than a simple positive ANA; as I have several immune deficiencies/disease) he literally shut his computer screen HARDER than normal out of frustration and said "You call you general Doctor and tell him I told you to have HIM do something about you Vit D DEFICIENCY, not low but deficient, and B 12 because I see these from the records he sent ME and he can do HIS JOB, he can do something for you"

My second visit when he asked me what my doctor said about the vitamin D and I told him I was informed to take 1000 units he said " NO, NO, NO...you take 4000 units not 1000, you doctor tell you only 1000 when you so deficient"?

I felt so important after seeing him because it was obvious he was what a doctor should be A LICENSED PROFESSIONAL DEDICATED TO IMPROVING HIS PATIENTS WELL BEING and not causing further harm. He has also prescribed me Baclofen which is used in MS and other spinal cord diseases because my muscle tension and spasms are so severe and it's only been 4 days and although I've not really been able to appreciate the pain relief I know it's working because my twitches and Charlie horses are almost nonexistent and my body pops and cracks when I move and stretch indicating my muscles are indeed relaxing and I'm more than OK with waiting because it's fighting over 10 years of neglect.

I am sorry for my short novel here but I wanted to give all my details because in all honesty until he pointed out the many things he saw wrong with me I'd accepted as normal and I'm sure there are others who have as well and perhaps me mentioning my experience could help others realize what they have accepted or overlooked in spite of other overwhelming symptoms.

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9 Replies

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  • Thank you for sharing this.

    You have been long- suffering and very brave.

    Isn't diagnosis liberating.

    X

    🐥

  • There really isn't any treatment for AIG but diet restrictions can be very helpful for digestion issues. I also take a pro biotic for women and I will be using my Neti pot as frequent as possible.

  • Yes, very liberating! It was decades for me too with doctors saying it was in my head. I was so relieved but it's hard to not get angry with them as this is supposed to be what they get paid for and I was the one who worked it out and then had to prove it to them. I had many problems also - hashis, autoimmune sleep disorder, pompholyx, deficient in everything constantly and millions of others problems and my pancreas and adrenals were just packing in. I'm glad you've got to the bottom of it. It appeared gluten had always been my problem and was proved to be the cause behind my autoimmunity and systemic inflammation. So many things cleared up after going GF even my dry eyes and mouth etc so hopefully you may also have a lot of improvements after.

    Remember, you must continue eating gluten until you've had the tests and bear in mind that I felt worse at first when went GF and I became very hyper and have had to drop my thyroid meds by quite a bit since as no longer need such high amounts so keep an eye out for that as you might think it's something else :-)

  • Thank you for your advice about GF, I know this is going to be a struggle but knowing how common it actually is lets me know there are many others who like myself are better by eliminating this and it's not only possible but sustainable lol.

    I agree totally with you about doing the doctors job for them and it's funny because I've actually gotten so frustrated with mine that out of despair I literally told them that there seems to be something wrong with me having to tell them what is wrong and have to pay them for my knowledge. However that did NOT score me any brownie points.

  • Luckily, I've actually got a GP I like now and we have fallen into a relationship whereby I walk in and tell him what tests I want and he says fine and passes the form over lol. That is far more suitable for me lol :-)

    It's much easier than you think, just remember most of the worlds food is supposed to actually be GF in it's natural form - rice, potatoes, dairy, meat, veg, fruit, nuts etc and once you start feeling better, nothing tempts you to eat gluten again lol!

    Good luck :-)

  • I like the sound of that doctor too lol!

  • What a lovely post, so sorry you have had a miserable time but so good to read that you now have a doctor who cares. Thank-you for posting and I hope you get better and better.

  • Since you mention allergies and sinus problems and you'll be going to gastroenterology ask them to test for DAO deficiency (diamine Oxidase enzyme). It causes histamine intolerance and many symptoms of "allergy". Especially if you've had allergy tests come back negative. In fact it would be a good idea just to test for anything related to histamine intolerance. It's seldomly tested and people can go for many years not knowing what is causing their symptoms, it also does more damage to the gut and then you can end up with more problems down the line. May as well cross it off the list if you have the opportunity now :)

  • As another person on here who has suffered, from disgraceful attitudes, of some medics, I can empathise with your experience.

    However! I can also celebrate with you, that at last, you have a great doctor helping you to understand and improve your well-being. I think it's high time, we started offering gold stars on here for fabulous, caring, knowledgeable doctors!

    I am diagnosed hypothyroidism, connective tissue disease, sjogrens syndrome. I relate to so many of your awful symptoms too!

    Currently, I am being seen by a very good team. Recent ultrasound showed my thyroid now non existent, shrivelled up. My GP had shown no interest in my thyroid symptoms.

    Like you, I am very, very fortunate, and very grateful to have found a team who are searching for answers. It is refreshing, after being ignored and at times, treated as crazy. (Shame on such doctors).

    I'm sure you are feeling better already!

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