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@socalgirlntx

Hello Group - I have recently had a positive ANA test with titer of 1:2560. I am a 55 year-old woman. I have been referred to a rheumatologist but can only get on a waiting list at this point with a delay of at least six months. Very frustrating. My symptoms have been getting progressively worse over the last three years which caused my GP to finally order an ANA test. My quality of life is decreasing so the idea of waiting at least half a year for a diagnosis is daunting to say the least. I'm hoping to get some direction from anyone that is experiencing similar issues and may have more information because they're farther along in the medical process. I'm including any information that is out of the norm for my usual good health in the past.

I have lived with Grave's Disease for about 20 years. I responded well to anti-thyroid meds and only recently was put on synthetic thyroid because my thyroid has "burned out" which apparently is expected after overproducing thyroid for so long.

Most severe symptoms are as follows:
Chronic Dry Eye (I have tried Restasis with no improvement) - I have to use artificial tears about every 10-15 minutes. My visual clarity is really suffering. I'm a full-time student so this makes studying very difficult. The only relief I get is by using warm/moist compresses, but the relief is very short-lived. I'm really scared I will eventually lose my eyesight altogether.

Chronic Inflammation in the upper colon (colonoscopy about 8 months ago). This causes pain EVERY time I eat. I have also lost about 30 pounds over the last 3 years. I think I have subconsciously decreased my eating in order to avoid the pain that comes after eating. Although I rarely have much of an appetite. I tend to eat only because I know I'm supposed to.

Dry Mouth and clogged saliva glands near the back of my jaw. Usually when this happens, I can apply warm compresses and massage the area and it gets better within a few days. I also have to drink whenever I do eat anything because I'm not producing enough saliva.

Fatigue - I am really tired almost all the time. I am normally an active and healthy person, so this is really frustrating. Some of this fatigue may be related to difficulty in sleeping. I take a prescription to help, but it only helps me to fall asleep but not to stay asleep.

Muscle weakness - I have a significant decrease in the strength in my hands, arms and legs. I've gotten to where I can't even open a lid on a gatorade or juice bottle. Thank goodness my husband or son are usually close by. I also have been diagnosed as having some significant arthritis in the joints in my fingers shown in an x-ray.

Headaches and "Brain Fog" - Kind of strange headaches that are less generalized as far as where I feel them. These headaches are kind of spread all over and sometimes felt more on the top of my head as opposed to stress headaches that I feel at my temples. I also have much more difficulty being able to maintain clear thought processing and find myself mildly confused much of the time. This makes studying for school exceedingly difficult.

High Blood Pressure that resolved itself once I began thyroid replacement therapy.

Although not as distressing, but still an issue is mild hair loss. My hair is about half as thick as it used to be on my scalp. However I have lost almost all of my body hair (saves me from having to shave my legs! Ha ha) I'm not sure if this is related to age or if it's related to my more current health issues.

These are some specifics on blood tests. I'm only including items that are outside of what's considered "normal". Some are more significantly out of norm than others. I have no clue as to the significance.

ANA SCREEN - Positive with 1:2560 titer. High results for SSA-52 (294 AU/ml) SSA-60 (182 AU/ml) SSB (114 AU/ml) I had negative results for Double-Stranded DNA antibody, Smith Antibody, Jo-1 Antibody and Scleroderma antibody.Antinuclear Antiboy with HEp-2 substrate, IgG by TFA was detected (Ref Interval 1:80)

CBC with Auto Diff (Only listing out of Norm): Hemoglobin 11.9, Lymphs 0.9, MCHC 31.8, Neut Abs 1.5, WBC 2.8

METABOLIC PANEL - All within normal range

LIPID PROFILE - Cholesteral, Total was (147) and HDL was (34)

THYROID SCREENING - Thyroglobulin Ab (8,807.7) and Thyroid Peroxidase Ab (633) - I'm sure this is related to the Grave's Disease, but not sure if it could be related so I'm including the information.

I am not sure what's relevant, but have tried to include as much information as possible. I'm just hoping someone else may have experienced similar issues and might help me to at least gain a better understanding of the "big picture". I am certainly not expecting to get any type of a diagnosis. I would also be interested in supplements or dietary information that may alleviate some of the more pressing symptoms I am experiencing.

Thank you in advance.

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Replies to "Hello Group - I have recently had a positive ANA test with titer of 1:2560. I..."

Hello @socalgirlntx, welcome to Connect. I'm tagging our Director @colleenyoung to see if we should move your post to the following similar discussion where you can meet other members with the same or similar symptoms and your post will have more visibility.

> Groups > Autoimmune Diseases > Undiagnosed and don’t know where to go next
-- https://connect.mayoclinic.org/discussion/undiagnosed-and-dont-know-where-to-go-next/

You might also be interested in reading through the following discussion:
> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Have you thought about getting a second opinion? I’m not sure if it is an option for you but if it is, the Mayo Clinic is very good at diagnosing health issues that are difficult to diagnose. If you would like to seek help from Mayo Clinic, you can contact one of their appointment offices. The contact information for Minnesota, Arizona and Florida can be found here:

Mayo Clinic Contact Information: https://www.mayoclinic.org/appointments

Welcome @socalgirlntx . I’m glad you have found MayoClinicConnect. We’re a varied group of people who share our health journeys, and information and support. We’re not doctors so can’t really diagnose or suggest medications, but people here are great at helping each other. I found MayoClinicConnect when I, too, had a bunch of strange symptoms. My problems were all GI but they eventually found the cause in my brain. 🥴. You’ve mentioned a wait of 6 months to see a rheumatologist. Do you live near any big cities with major medical centers or university hospitals? You might try contacting one and asking for help. Or ask your physician to summarize your problem in a letter to them. This is what I had to do. My husband allied the university medical center and was able to get an appointment and someone who would pay attention. I’m so glad he did! Is this something you might try?

@socalgirlntx I think several of your symptoms may be thyroid related, the hair loss, loss of appetite, fatigue and weakness. I have Hashimoto's and take a desiccated pig thyroid pill called Naturethroid. There is also Armour Thyroid. My doctor told me that some patients cannot convert between the different components in thyroid medication, and the synthetic does not have all the components, but the natural pig thyroid does. You might ask to try this and see if it helps instead of the manufactured thyroid medication.