I was diagnosed with Hashimoto's Thyroditis about 6 years ago. My current doc. also says I have a generalized autoimmune disease, but I am on the very low end of it. I am now 24 yrs old and I am just at my wits end and don't know where to turn or what to do. I have seen many different docs and been to a couple different endo's. No med's that they have ever given to me have ever made me feel any better....at all. In fact even though I have been treated with Synthroid, Cytomel, Prednisone (for autoimmune) and currently Levoxyl I feel that I have only gone down hill over the past six years. I feel worse than I ever have. My last test results for my thyroid were done on 2/7 of this year and were: TSH 1.90, and Free T4 1.5. I am due for another test next month.
I have tons of symptoms that I could go on forever about, but here are some of my main concerns. I am so fatigued and week all the time I have a hard time just doing simple tasks around my house such as sweeping the floor or folding the laundry. If I do anything more then that I have a hard time recovering from it, such as I am even more tired and generally feel worse for anywhere from 1-4 days after. I have to take naps frequently sometimes taking 2 day that can last 2-6 hours.
I have body aches and pains and stiffness all the time.
I have very itchy dry skin and lotion does not help with the itchiness. Sometimes it makes me feel like I am going crazy it itches so badly. When it gets really bad the oatmeal baths relieve the itching for a while.
I do not deal with cold or hot very well. At times it has to be about 78 degrees in my house and I still have to bundle up in sweat pants, a jacket and socks to stay warm. My feet and hands are the worst. On the flip side if I get too hot I feel sick... lightheaded, nauseous. I don't ever really feel comfortable at any temp. and it tends to bounce between hot and cold all day.
My appetite is constantly fluctuating as well. One day I feel like I am starving no matter what I eat (can eat a steak and potato dinner and either still feel hungry or I become hungry within an hour of eating it) and other days I am not hungry at all.
I have Insomnia and take Ambien to sleep, but it only helps a little and sometimes it doesn't work at all. I have tried other med's for this and this one works the best.
My throat is always sore and just aches a lot of the time, even more so when I am more active. I have a hard time swallowing sometimes, as well. I do have a goiter and have had a biopsy and test results came back normal.
I have acne and it has only gotten worse. I have tried different meds and creams and they either make it worse or don't help at all. It has spread from just my face to my whole upper torso and I have recently started getting blisters on my arms that are painful. When I pop them clear liquid comes out and relieves the pain for the most part. The same blister will keep blistering up...even under the scab and it takes about 6 months to heal and leaves a nice little scar. I am wondering if this could be some kind of skin problem other than acne?
I have noticed that I feel quite thirsty all the time. My mouth and throat feel dry. I have tried dinking more water and it doesn't seem to help. I also have to urinate very frequently sometimes once every hour. I have also tried to drink more water which makes it worse and have tried to drink less which helps a little but I still have to go frequently and most of the time it seems to be a normal amount. This is a huge inconvenience when I want to go somewhere or even if I am just busy doing something.
I have gained about 80lbs over the last 4 years and for about 6 months I have been exersing (walking on treadmill) 4-6 times a week for about an hour a session and have made some diet changes as well. I have only lost about 10 lbs. Although I would like to loose more weight and will continue doing what I am doing now I would like to get feeling better overall.
When I was about 18 or 19 I got mono. I haven't felt well ever since and it has just gotten worse. Could it be related? Could I still have it?
Before all this started happening I was very healthy, at my recomended weight and very active. All of these and many more symptoms have developed over the last 4 years. They just keep appearing and/or getting worse. I have been tested for many differne thing such as diabetes, schograns, wilsons, and so on. My husband and I would like to start our family, but have decided that we won't do that until I feel better. My quality of life right now is horrible and some days I get very depressed about it. I can deal with most of these issue's, but I would really like to have more energy and not feel so fatigued and week all the time. I apologize for the long post but wanted to be thorough in hopes that someone might know what is causing me to feel this way. If you have any ideas on what could be causing me to feel this way or what could help I would be grateful for any advice .
Thanks a ton in advance
First things first -
insist that your doctor do the following tests for celiac disease: anti-endomysial antibody and anti-TTG (Tissue transglutaminase, I think).
Celiac disease is an autoimmune reaction to wheat gluten. Your doctor may laugh at you because most doctors think the only people with celiac disease lose weight and have chronic diarrhea but they are WRONG. Insist on it. It is possible that your rash could be dermatitis herpetiformis, a blistering rash associated with celiac disease.
Celiac disease is associated with (and may help to cause, because of effects on the bowel) other autoimmune diseases, especially thyroid disease and Type I diabetes. Also, people with celiac disease have malabsorption, and may not absorb their thyroid supplements adequately.
Another possibility is that you are one of those relatively rare people who do not convert the (inactive) T4 into active T3. Insist they check your Free T3 along with free T4 and TSH with your next blood draw. Talk to your doctor about trying you on some T3 in addition to your synthroid, or possibly Armour thyroid (made from pig glands, contains T4 and T3) which seems to help some people. Google Dr. John Lowe, he does some very interesting work with fibromyalgia patients and T3.
Don't sit back and settle for this. It will be hard, but you need to push to get better answers. You may need to see other doctors before you can find one willing to test what you want tested and try what you want to try - be persistent.
While you're getting those celiac disease tests, ask for an anti-gliadin antibody and a total IgA also. Been reading a little more - anti-gliadin is a pretty nonspecific test (false positives - not everybody with a positive test has celiac disease). But I was just doing some other research on psoriasis and celiac disease, and there's a group of psoriasis patients with positive anti-gliadin antibodies, but negative for the more specific confirmatory antibodies (anti-endomysial and anti-TG) - but most of them saw improvement in their psoriasis on a gluten-free diet. So - they don't qualify for a diagnosis of celiac disease but they still improve with a gluten-free diet. It's interesting enough that I'd say maybe any autoimmune patient with a positive anti-glidin antibody ought to try a gluten-free diet. (Don't cut back on wheat before your testing, though - you don't want the antibodies to disappear before they test you).
The reason to ask for the total IgA, some celiac disease patients also suffer from a deficiency in the IgA class of antibodies, so they won't test positive for anti-endomysial and anti-TG because those tests are for IgA antibodies, and they might be missed if you didn't know they were IgA deficient.
I'm just posting to second everything Ellie said. That was the first thing I thought of...celiac disease and possibly adrenal disease.
I can't believe how much your symptoms sound like mine!! The only thing I don't have is the rash you described (although I break out in hives on my arms and legs if I get hot).
I am so sorry you've had this continue on for so long (it's *only* been 2 1/2 years for me)!
Have you had your TSI antibodies checked as well? They're antibodies typically found in people with Grave's disease (autoimmune hyperthyroidism) but a small percentage of people with Hashi's will have them due to a condition called: "Hashitoxicosis". It might be a test worth requesting.
Many AI diseases seem to be triggered by viruses, emotional/physical trauma, childbirth etc...So it's very likely that your case of mono set off the Hashi's. I became ill after a bout with the flu; I just never got over it (or at least that's how I feel).
If you're able to get the testing suggested here, post the results and there are many here who may be able to help you (post the results with the ranges also).
I'll be thinking of you!
P.S. The sleep/eating thing alone is so frustrating! I take sleep meds too (Lunesta, Ambien made me feel groggy and it only helped me to stay asleep and not actually GO to sleep) but on the other hand there are days I sleep 12-14 hours straight.
I read up on celiac disease and it does sound a lot like the symptoms I am having.
I also read some stuff on some different adrenal diseases and when I read about Cushings syndrome I was amazed at how many of those symptoms matched mine. I am pretty sure I have been tested for that and it came back normal, so I may ask to have it done again too.
Anyways, I am making an appt. first thing Monday morning, and will definitly keep you updated.
Thanks again for the info on this stuff! I don't think I would have ever thought of these by myself...and even if I did I wouldn't know what tests to have done.
You sound so much like me. I had mono when I was 16 and it attacked my liver and spleen. It was so bad that I spent a month without being able to keep anything on my stomach except grape juice. I went from a hundred pounds to 85 pounds and the white area of my eyes was completely red. I also had a bad case of acne two years ago and is better but I still breakout on my chest and scalp. I can only use organic hair products and mineral makeup. I also have keratosis pillaris on the back of my arms. I read while researching about thyroid disease, that there is a relation between mononucleosis, or Epstein Barr and thyroid conditions. Mononucleosis is also related to depression and liver problems. I had depression and cannot digest red meat, pork, or gelatin products. I get cramps on the left side of my lower ribcage and get bloated if I eat those products. Mono alters the composition of your cells permanently. It is possible to infect others at any time during your lifetime without knowing. I hope that I never make my husband or my kids sick with mono.
I was diagnosed three weeks ago with hyperthyroidism, and will get my official diagnosis and course of treatment next week. I can't hardly wait for my appointment! I have gained 20 pounds in less than a year and need to take naps more than once a day. I can barely clean my house or exercise, and I am the kind of person who loves to lift weights and do step aerobics. I am praying that the meds will help me get my figure and energy back.
TESTOSTERONE, TOTAL 34 2-45 ng/dl
TESTOSTERONE, FREE 2.6 0.2-5.0 pg/mL
TESTOSTERONE, BIOAVAILABLE 5.4 0.5-8.5 ng/dL
ALBUMIN 4.5 3.7-5.1 g/dL
SEX HORMONE BINDING GLOBULIN 55 17-120 nmol/L
HEMOGLOBIN A1C 4.9 NON-DIABETIC <6.0
MEAN PLASMA GLUCOSE 97 MG/DL
THE MEAN PLASMA GLUCOSE IS CALC. FROM THE HEMOGLOBIN A1C RESULT
COMPREHENSIVE METABOLIC PANEL
GLUCOSE 89 SEE BELOW MG/DL
*REFERENCE RANGE FOR GLUCOSE
UREA NITROGEN, SERUM 13 7-25 MG/DL
CREATININE, SERUM 0.8 0.5-1.2 MG/DL
BUN/CREATININE RATIO 16.3 6-25 RATIO
SODIUM, SERUM 140 135-146 MMOL/L
POTASSIUM, SERUM 4.4 3.5-5.3 MMOL/L
CHLORIDE, SERUM 108 98-110 MMOL/L
CARBON DIOXIDE 21 8-31 MMOL/L
CALCIUM, SERUM 9.2 8.5-10.4 MMOL/L
PROTEIN, TOTAL SERUM 6.7 6.0-8.3 G/DL
ALBUMIN, SERUM 4.6 3.2-5.1 G/DL
GLOBULIN 2.1 2.2- 4.2 G/DL
A/G RATIO 2.2 0.8-2.0 RATIO
BILIRUBIN, TOTAL 0.9 0.2-1.3 MG/DL
ALKALINE PHOSPHATASE 110 20-125 U/L
AST (SGOT) 15 3-35 U/L
ALT (SGPT) 17 3-40 U/L
CELIAC DISEASE COMP PANEL
TRANSGLUTAMINASE IGA AB <3 SEE BELOW
*REFERENCE RANGE FOR TRANSGLUTAMINASE IGA AB
ENDOMYSEIAL AB (IGA) /// NEGATIVE
RELFEX TESTING NOT REQUIRED
ENDOMYSIAL AB TITER /// LESS THAN 1:5
REFLEX TESTING NOT REQUIRED
GLIADIN AB (IGA) 4 SEE BELOW U/mL
*REFERENCE RANGE FOR GLIADIN AB (IGA)
IGA, SERUM 120 81-463 mg/dL
TISSUE TRANSGLUTAMINASE (IGG) /// SEE BELOW U/ML
REFLEX TESTING NOT REQUIRED.
If anyone can explain what these are or what they mean, that would be great. All I got told by the Doctor is that I was negative for what he tested me for, even though the numbers in orange are out of range. Thanks!