I got the results of some of my regular blood work. My TSH is up again but my free thyroxine is still normal. Neuro thought it might me Hashimotos thyroiditis. I had half my thyroid and 2 parathyroid removed 30 years ago for a benign follicular adenoma. i have never felt that I had the same stamina since that surgery. I have had fluctuating bouts of lethargy and weight going up and down, etc since then. My thyroid antibodies are negative.

I have an appointment next Wednesday with an endocrinologist at Jeff. Neuro asked if my parathyroid had been evaluated. My calcium has been low normal to low for a while even though I take supplement so the GP ordered a parathyroid panel too. My CBC hematocrit, hemaglobin rbc count has had a downward trend for a while but still in the normal range. My RDW has been above normal for years. Could this be pernicious anemia or more autoantibodies? I heard that MG, hypothyroid and pernicious anemia sometimes happens together. Does anyone else have fluctuating thyroid. Can it be hypothyroid when the free thyroxine is still normal. I hope they decide to treat the hypothyroid since that causes muscle weakness and fatigue too. Any feedback would be appreciated. More blood work and CT of thymus is scheduled for tomorrow. I just have a feeling that more abnormal results are coming.

I am on 40 mg of pregnisone for 2 weeks and not feeling any better but I am more stable. I have had one more fall, of course on the same injured knee. I wish they would up the pregnisone and start another course of alternative treatment. I really think my body could use a jump start with some IVIG. I have been so long waiting for treatment, I do not want to take a conservative approach and summer is coming soon and the heat will just make me worse. A couple weeks ago it hit 70 degrees for 2 days and I felt so ill.

thanks
kathie

I had a thyroidectomy and I have wide swings in TSH and free T4 levels, which makes me feel even worse. I hope they can get it all figured out for you. I just have to keep adjusting my meds up and down. I have found that I do much better on natural thyroid (Armour thyroid) than on the synthetic (synthroid).

I think I suffer from Hashimotos too

Kathie, Have they done an ultrasound of your thyroid recently?

Do you mind my asking how high your TSH is? I feel best when mine is between 1 and 2. That's the "new normal" endocrinologists shoot for. It used to be anything above 5 or more (depending upon the lab).

Hashimoto's can be a gradual thing. There can be destruction of the thyroid that can make you feel horrible - especially if you only have a half of one - but the T4 doesn't necessarily change until late in the progression.

Have you had a brain MRI?

I agree with Limpy. I feel better on NatureThroid (it's from Canada). I was on Armour Thyroid too but it was discontinued for too long so I had to switch. My cardiologist said that many of her patients felt much better on those "natural," desiccated thyroid drugs.

Pred will only add to that calcium deficit. They started you on a fairly high dose of Pred. Are they going to wean you down right away? Or go every other day with like 20/10 or whatever?

Doctors have this "protocol" in place where they reach for the Pred before other treatments. It mainly has to do with cost. If you can wean down to a place that still helps your MG but causes less destruction of your body, that would be smart. You don't want yet another gland (adrenals) to tank on you. Of course, you wouldn't want MG tanking you either.

On your CBC, what is your MCV? If it's below normal, that usually reflects iron deficiency anemia. If it's above normal, a B12 deficiency. The problem, however, is if you have both deficiencies present, it can be in the normal range! Yes, they should check your B12 because a deficiency of it can reduce both red and white blood cell counts, though not necessarily make them below normal.

Are you tired? Any numbness or tingling or nerve pain in any extremities? Headaches? Back pain? Any of those symptoms can indicated a B12 deficiency.

Have you been tested for celiac disease? People with CD can have no Gi symptoms but can have deficiencies that can cause all kinds of problems.

The important thing when having any deficiency is to determine the CAUSE of it. For example, I was tired from my B12 deficiency. The deficiency causes the sleepiness but my doctor did not try to figure out the cause of the deficiency! For me, it wasn't pernicious anemia but achlorhydria. They can do the intrinsic factor antibodies and the parietal cell antibodies to figure out if you have PA. If you have PA, it also means that you have achlorhydria. The antibodies attack the area that produces stomach acid. You need stomach acid to properly digest your food so that it and all of its nutrients can be absorbed in the small intestine. I had a low calcium, albumin and iron too, which are now normal.

Do you take calcium with vitamin D? Don't have anything citrus when you do. Vitamin C helps absorb iron, which you might need too. It's important to space those supplements apart during the day. And it might be a good idea to take vitamin D and calcium twice a day.

I can't do the 70's and up. It quickly tanks my MG. You need to be careful in the summer because the effects are not only immediate but cumulative. Try to find ways to stay cool.

This is rather silly but it works! When I do have to go outside around the house, I put either a cool, wet wrap around my neck or what's called a "Boo Boo Buddy" in each bra cup. Yup, you read that right. They are these gel packs used for kids - because they are not too cold - and are so useful for cooling down.

Those hand-held fans are great to keep in the car too. I used to go out with a thermos with both water and cool packs in it when I ran errands. My car's AC is fast now though. You have to set yourself up for success in the summer.

Okay, those are my thoughts. I hope you don't get worse. It sounds like you have great doctors and that's half the battle.


Annie

Thanks everyone. My TSH runs between 4.6 ans 3.5. I had the antibody test for celiac and it was negative and 3 endoscopic biopsys of the villa. But I have had rapid intestinal transit, to put it nicely, on and off all my life. In the past 2 years as the MG came on, it got worse. Food is passing undigested. It stopped the day they put me on mestinon. I only have it once in a while when the MG gets bad. I think I have Chrohns or an autonomic component of one of my autoimmune diseases.

I have not had a scan of my thyroid in years, but I have an endocrinologist appointment next week so I am sure one will be in the works.

I did have a brain MRI to rule out MS, but I m not sure if they looked at the pituitary. I had a cousin who had cancer of the pituitary. I was wondering if I had the autoimmune disease that attacked all the endocrine glands.

40 mg pregnisone is the starter dose. I think they are going to up it to 60mg. He said I would be on it at least 6 months including the weaning process, maybe longer depending on how fast they get a therapeutic dose.

RBC, hemaglobin and hematocrit are all on the low but normal range and have steadily decreased over several years. MCH, MCV and MCHC are dead center normal. My RDW has been consistently high 14.6 - 15.6 for 5 years. That is why I was thinking pernicious anemia with the thyroid. Yes I am easily tired and weak, hard to separate the symptoms from MG. I get the tingling in my feet. I have constant tinnitis. And I get tetany of the toes as well as muscle fascilations.

I do think I have several autoimmune diseases. I was hopping for more aggressive MG treatment before the summer heat. When the MG got bad last summer, I turn on the AC, fans and pack zip lock baggies with ice and put them on my big muscles and drinks tons of ice water. That did help a lot. But I do not want to spend my summer in the recliner again. I went back to work on Monday, two days on, 1 day off, 2 days on. I do not know for how long. I can not imagine managing through that again this summer working fulltime. I work in a "green" building and they have the AC set to 85 degrees.

Thanks for all the help
kathie

Kathie, You should know that some "brilliant" minds out there decided that the Reticulin antibody didn't need to be done anymore. Reasons? Cost, wanting a magic bullet test and lots of other stupid reasons.

So they probably ran the Endomysial and Tissue Transglutaminase only on you. Do you know if they checked your IgA level? If that is low, antibody tests will register a false negative.

If you have Reticulin antibodies, the biopsy might be negative. There are more variables to diagnosing CD than what is readily obvious. Have you ever tried going without gluten?

If food is undigested on the other end, that means a lack of stomach acid. What stopped after taking Mestinon? The undigested food or the rapid transit?

Did you know that you need acetylcholine to make stomach acid? That and histamine and gastrin. So that would make sense that taking Mestinon would stop the issue with undigested food.

I hope your appointment goes well. Don't leave unless they agree to test your B12!

Annie

They did the tissue trangluenin IgA which was only 5 - negative When I started mestinon 6 months ago, the diarrhea and passing undigested food stopped, it was like day and night. I have only had a handful of incidence in the last 2 months on days when my MG is very bad that the diarrhea and undigested food starts again.

My protein levels are low too. B12 was normal. I think I am just not absorbing the nutrients. After I straighten out my thyroid and parathyroid, I am going to pursue them researching intestinal autoimmune disease. Now that I have been diagnosed with several autoimmune diseases, I think they will take me more seriously.

I am going to ask the endo to test the pituitary too. If you think of anything else that would be helpful, just let me know.

As always, thanks for all your guidance.
kathie

What did they say was a "normal" B12? You know, the number and the range of normal.

My b12 was 1210 pg/ml where normal is 211-946. I take a multivitamin and 2 fish oil and 2 calcium with D3 every day, and no other vitamin supplements.

I should have more blood results on MOnday.

thanks,
kathie

The radiology department says they faxed the CT of the THymus results to the neuro. Neuro says they don't have it. Radiology says they will fax it again. I kind of have the feeling that since the sent the results so quickly, their must be something there. I hope I get results tomorrow. I left a message for the neuro that my chest is tight and I had some swallowing issue with the warmer temperature and I asked for IVIG. I will let you know what he says.

kathie