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So I have gained a fair amount of weight since my Graves went into remission (still have antibodies). My TSH is normal but I have Thyroid Peroxidase (TPO) Antibodies (TPOAb) / Antithyroid Peroxidase Antibodies  levels of 198.

I don’t know what this means exactly, except that it’s associated with Hashimotos and my doctor never told me this (even though I asked specifically). I found it on my medical records. It’s also associated with pernicious anemia, and even before I had Graves, my B12 level is 170 (doctor never thought it was an issue, never told before, I found it on my records).

For the last 3.5 years I have had HORRIBLE digestive symptoms and low levels of iron, b12, magnesium, calcium and D.  Not sure if there is a link, but something is off and my old doctor outright lied when I asked her about Hashimoto’s antibodies.  And as I just checked, my Graves Disease antibodies Thyroglobin AB was NEGATIVE!!! Never knew this.

  • Free T4 is 10.
  • Free T3 is 4.7.
  • TPO is 198.
  • TSH 0.98
  • Triglycerides 2.66!
  • Albumin 41
  • Thyroblobin AB – negative

I have come off gluten for 4 days and have a great improvement in my gut symptoms, and it makes sense now since Hashimoto’s is associated with gluten problems.  So confused, but this makes more sense with the symptoms I’ve been having: VERY dry hair and skin, eczema, digestive issues, numbness and tingling, low ferritn, calcium, b12, magnesium and vitamin D, not to mention weight gain.

 

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I recently switched doctors, which gave me access to my medical records. I found out some surprising things that my doctor never told me. Apparently, I have high triglycerides 2.66 MMOL/L (I’m mid 30s female). This happened as soon as my Graves disease started going into remission. I wonder if I’ve been having mild bouts of acute pancreatitis or papillary stenosis ( a disturbance of the sphincter of Oddi, a muscular valve, that prevents the opening and release of bile or pancreatic fluids into the duodenum in response to food entering the duodenum.)

I also had a colonoscopy and and upper GI scope, and she told me it was normal, but the report said that I had proximal small bowel mucosa with minimal focal intraepithelial lymphocytes, without specific pathology. “It may be nothing noteworthy, but it comes up with inflammatory bowel disease and says can be seen with early gluten sensitive enteropathy.”  So, am I gluten sensitive? Will going gluten free help? I tested negative for Celiacs, but..I have heard gut dysbiosis can make you sensitive to foods you normally can eat. Going to try it for a little while to see if it helps.

t-IgA = 5 KEU/L

 

Update July 27, 2014

So, I have given up gluten for only 4 days now and have noticed a big improvement in my gas and bloating, and believe me, I am/was the world’s biggest skeptic. Two things made me give this a try: a) my daughter has terrible, eczema on her hands and green, mucousy poops, and b) and upper GI scope that says small bowel inflammation, but not Celiacs.  So, I was desperate and gave it a try – half-hearted at first, but after seeing a difference, I’ve been getting stricter, until today…at a bridal shower. I had half a sandwich and BOOM!  My stomach is in agony.  Now, whether it’s gluten, or wheat, it’s the first time I’ve had it in days and boy did it react with me.  Doubled over with stomach pains and gas. It doesn’t last forever, but when I was eating Mini Wheats twice a day, breakfast and afternoon, I felt like every food was bothering my stomach.  I can NOT believe it could be gluten, but my daughter’s poop is already back to a brown colour and her hand eczema is 80% better (until today, when her father, a non-believer, fed her TimBits and a hamburger with a regular bun). Her hand is already more red and she’s been farting and burping. It sucks.

I really don’t want either of us to have this condition, but the gas pains are just too much for me, and I hate to see my daughter face similar symptoms.  Throughout my life my symptoms have waxed and waned and it seems my thyroid has been the breaking point for me – the second it started going into remission my problems with food/gas began.  As a baby I was always constipated (like my daughter), and have had horrible gas my whole life, which was worse during puberty and during University. It was not bad after my first daughter, in fact, I felt great! When my Graves was at it’s worst, my digestion was at it’s best, ironically.  Now, with Graves in remission (but with anti-bodies which haven’t changed from 198), my stomach is a disaster!

So, I will keep you updated on how the gluten-free thing works out. At the very least, my very picky-eater daughter is trying more foods. She actually has latched on quite positively to this gluten-free kick, which was a humongous surprise to me, since she really is a very picky eater.  Maybe it’s not the worst thing in the world, this gluten-intolerance thing.

Good bye, my beloved fresh buns. I will miss you!

 

Update July 31

1 week off gluten and I realize there is more going on than just a gluten sensitivity. I know milk is an issue for me, so I tried soy milk in my coffee and my nose instantly started running.  I had a reaction after dinner last night and I can’t figure out what caused it: I had chicken (I baked myself), potatoes, and a bowl of gluten-free Chex with coconut milk.  I also had a green tea and a iced-tea.  So, maybe tea doesn’t agree with me? Weird.

I used to swell up – go all red and puffy after eating and would sweat. That has stopped!  My thyroid is still not controlled (T4s are the the bottom of the normal range at 10 pmol/l or .777 ng) and I wonder if that was corrected if I’d be less sensitive.

My “allergies” or “sensitivities” started all of a sudden – basically in January 2011 I could no longer eat what I wanted. This is also when my t4 was at 9.7 pmol/l, the lowest it’s been.  So, I think there is a hypothyroid connection here.  In fact, six months later my t4 was at the same level and I was in really bad shape. I was 5 months pregnant at this point and was swollen like I was 9 months pregnant. I started taking lots of supplements for the remainder of my pregnancy, and not sure if that helped, but when I was 9 months pregnant I felt the best I had the whole pregnancy. After my daughter was born, things quickly spiraled back to where they were, although I didn’t realize the food connection because it wasn’t immediate and because I couldn’t figure out which foods bothered me.  But I finally realized that eating made me sweat, in between my shoulder blades and up the right side of my face. Weird, I know.

Just curious what other reactions to food people have had while being hypothyroid and what your free t4 levels are!

Read the comments in the link below. Some of these stories resonate so much with me!!

http://glutenfreegirl.com/2011/05/symptoms-of-celiac-and-gluten-sensitivity/

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I had Graves Disease that went into remission. However, ever since having Graves, I have had trouble with my b12 levels. For the past 3.5 years I’ve been battling many weird symptoms that at first were treated seriously: had an MRI to look for MS due to numbness in my cheek and thigh. I had an upper and lower GI (gastrointestinal) scope to look for digestive issues and causes of malabsorption (also low in vitamin D, calcium and magnesium as well as iron, which as 10).

Despite having had a blood test where my b12 levels were 115, and despite severe macrocytic anemia, my doctor didn’t think anything of these levels. I had b12 shots monthly and my symptoms seemed to get a little better, but very, very slowly and never completely went away.

I started looking at other causes of my pains and ended up with a fibromyalgia diagnosis by my doctor and a prescription for anti-depressants, which I weaned myself off after about a year on them. My pains never went away and my doctor started becoming really insulting by always asking, “Are you anxious?”  Well, yes, because a) my symptoms aren’t going away, and b) you treat me like a hypochondriac.

Last summer my friend told me how she started injecting herself, so I thought I’d give it a try. My injection schedule was irregular, but I did see steady improvements. However, when things started to go downhill at March break of 2014, I didn’t suspect my B12 levels at first.

My symptoms

The pain started to grow, especially in my neck and my back. There was a pain that wrapped around my rib cage, just above my bra line, especially on the right side of my body (I use my mouse with this hand), and I sit at a computer a lot.  One of my stranger symptoms was sweating in my right shoulder blade area, near the spine. I think this is an area that was just highly irritated due to using my mouse a lot. The sweating seemed to run up into my face – my jaw muscles were always very sore and irritated. I’d try to massage them and they would hurt for days.   Pain in my upper arms was constant and my arms would fall asleep as I lied in bed reading.  My feet would also hurt walking on them in the morning. My hips ached too, especially the right side.  I also had terrible swelling in my fingers and sometimes feet.  And weirdly, it affected my digestion. I would get diarrhea. Sometimes food seemed to irritate my stomach.  The slightest movements would hurt my spine and I’d get photo-sensitivity. Even, occasionally, mild urinary incontinence.  Finally, tinnitus and insomnia were two of my earliest symptoms.  Oh, and really bad hot flashes and cold shivers. Freezing cold butt and feet. And, I know my TSH level during this time remained “normal,” between 1-3.

Finally, I suspected B12 and started injecting daily for the past 4 days and again major relief in the pain, with still lots of naggling pains that I suspect will take some time to disappear.  I also feel almost worse after the first few shots. My tongue tingles, my face tingles. I feel tired and lethargic.  However, I remember from before, this does get better as your body starts to heal. I also remember how long it takes to return to normal energy levels, and even longer to feel “normal”, if you ever make it back there. However, I am very happy to be self-injecting. It’s super cheap, too. I pay $7 for 10,000 ml of B12 which lasted me almost a year last time, but now I know I need to inject much more frequently to be symptom and pain-free.

 

 

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After having pain and swelling in my back for 3+ years, I have read yet another article that makes me re-evaluate the cause of my troubles.  As my graves was going into remission, I had a sudden onset of pain in my back, shoulders, hips and neck.  I’ve just read an article about adhesive capsulitis & frozen shoulder with autoimmune diseases, specifically Graves disease.  Well, after seeing a massage therapist for the last nine months, and seen drastic improvements in my condition, I’m lead to believe that this might be the cause. During the first 6 months of my symptoms, Jan – Jul 2011, my ESR went up to 34!

During my massages, my skin indents because it’s so adhered to the muscle. The longer I go between massages, the greater the indents!  So weird. Anyway, my doctor thinks I’m crazy because she can’t find the cause of my back pain.  About a month ago, there were three big pops during my back massage and “water” would come out of my back for the next two days.  I’m wondering if it was just capsulitis now?   It kind of makes more sense than some of the other theories I’ve had, but I could say that about this theory in a couple of months. Oh, the joys of undiagnosed conditions!

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Gallbladder issues?

I wonder if all of my trouble is related to my gallbladder.  The fact that I had so many vitamin deficiencies (vit D, iron, magnesium, calcium, b12) and swelling of the abdomen, that perhaps I’m having gallbladder inflammation. I know I don’t have stones, but have constant, nagging pain (not intense pain, just gnawing pain) in my right shoulder blade area.  I have had a few bouts of more intense pain over the last 3 years, but they have been few and far between.

So, after stretching intensely (standing up, arms above head, leaning to left side), I felt ripping in my back, near the bra line and a return of blood flow to that area – it got all warm and “pulsey” after that, although it took a full three weeks to rip it completely.  I have had a CT scan, x-ray, and ultrasound of my kidneys, which was initially suspected after the x-ray showed a dilated right kidney.  I also sweat badly between my shoulder blades, which is a weird spot to have it.

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Okay, so I’m pregnant again. Quick recap: baby in 2008, miscarriage xmas 2009, lost a 22 w pregnancy in Oct 2010, and now I’m 11 weeks pregnant again. What a roller coaster. I got GD in Sept 2009 (hence the 1st miscarriage).

So, now I think I’m safe from a miscarriage standpoint. I’ve had an ultrasound at 9 weeks and the baby was alive and kicking. I go for IPS screening next week to hopefully rule out genetic issues, and then I’ll be able to announce to my family that the reason I’ve been so tired and crabby lately is due to 1st  trimester hormones.  Probably 2 weeks to go before I can let the cat out of the bag. I can’t wait.

I’ve been quite nauseous this pregnancy, but fortunately, in shorter bouts. Last pregnancy I was sick from 5pm to midnight.  This time I get intense pukey feelings, but they don’t generally last that long. Much better. I take about 6 Diclectins a day – 2 at night, 2 in the morning, 2 at noonish.

I also didn’t lose my hair during this pregnancy, which I did with the last one. Many nights I’ve gone to bed at 8pm though – pretty standard.

I also am still battling my fibromyalgia-like symptoms, although to a lesser degree. My veins still look blue and swollen, although there are no circulation problems that have been identified. I’m 33 and average weight and fairly fit. Neurologist appt is a month away.

Update: April 17, 2011

Had my second ultrasound (my first IPS ultrasound) and everything looks good so far. I am so relieved, but not relieved enough to tell people. I caved and told my parents this week but just came back from a birthday party, wearing a baggy shirt, and didn’t announce the news to anyone despite the fact that I’ll be 13 weeks on Tuesday!  I am feeling pretty good about this one – that ultrasound was very reasurring but I am still waiting for the blood work. I also contacted McMaster’s Prenatal clinic in Hamilton for additional testing. Wish me luck!

Jan 2012 – I now think I have adrenal insufficiency! Too much cortisol (from stress) causes vasoconstriction, which can lead to numbness. Too little cortisol (adrenal insufficiency) causes widespread vasodialtion!

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Graves disease,…what a wonderfully complicated disease. When I first got it, I noticed that I got bad eczema on both my knees.  Previously in my life, I have had, very rarely, mild eczema on my elbows.  I have noticed that since GD, I have had more patches and more frequently. Fortunately, my knees have cleared up, but I do get more frequent flare ups on my elbows. I even had a very small, but very itchy patch on my thigh.

Update: I’m not sure if it’s eczema or psoriasis.

Psoriasis is a chronic, autoimmune disease. It occurs when the immune system sends out faulty signals that speed up the growth cycle of skin cells. The most common form, plaque psoriasis, is commonly seen as red and white hues of scaly patches appearing on the top first layer of the epidermis (skin).

In contrast, eczema is broadly applied to a range of persistent skin conditions, including dryness and recurring skin rashes that are characterized by one or more of these symptoms: redness, skin edema (swelling), itching and dryness, crusting, flaking, blistering, cracking, oozing, or bleeding. Areas of temporary skin discoloration may appear and are sometimes due to healed injuries. Scratching open a healing lesion may result in scarring and may enlarge the rash. Eczema may be confused with urticaria. In contrast to psoriasis, eczema is often likely to be found on the flexor aspect of joints (which is where I have it).

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