Autoimmune Thyroid Disease

An Unfortunate and Lengthy Adventure in Misdiagnosis

I am no longer sensitive to amines

with 17 comments

So, this blog was supposed to be about food chemical intolerance, and perhaps some readers have thought I’ve gone off-topic over the last few months by talking about my thyroid diagnosis.

Far from it.

Since I’ve started having high energy days recently, I’ve been indulging in all kinds of foods that used to be off-limits to me.

Christmas consisted of eating a lot of cheese, ham, chocolate, and other high glutamate and amine foods, over several days in a row, so I guess that counts as a food trial.

I am no longer sensitive to amines and glutamates. I used to get horrible symptoms – heart palpitations and heart block, nightmares, anger, tearfulness, and a lot of pain and muscle tension. I can’t even remember all of the symptoms I used to get, because there were so many.

I’ve eaten a lot of cheese over Christmas. By this, I mean, several ounces per day, and we’re not talking fresh cheese, we’re talking vintage Cheddar, Stilton, Wensleydale, Cheshire, stuff with apricots, chillies, herbs, you name it. I’ve also eaten a great deal of chocolate – and not just Cadbury’s, but the really strong 70% dark stuff too – dates, ham, slow cooked (12 hours) pork with crackling, chicken skin, tomatoes, you name it, I’ve eaten it.

I am no longer sensitive to amines. Not even a single skipped heart beat. No neck pain, no fuzzy brain. The worst I’ve had is to remember a couple of dreams in the morning, which is actually kind of nice.

I haven’t yet done a proper salicylate trial, but I have been eating cornflakes, some bits of fruit like dates and jam, nuts, herbs, pepper, and a few root vegetables and so on. I have wondered on and off whether they might be contributing to a bit of back pain and grogginess in the morning, but I’m having a terrible time getting my thyroid dose right, so I’m reserving the proper trial for a time when my body has stopped trying to kill me.

So here’s the big news: if you are food chemical sensitive, you MUST GET YOUR THYROID CHECKED. By getting your thyroid checked, I mean:

  • TSH
  • Free T4
  • Free T3

and ALL FIVE thyroid antibody tests (for both Hashimoto’s and Graves diseases). These are:

Hashimoto’s:

  • TPO (thyroid peroxidase antibodies)
  • TG (thyroglobulin antibodies)

Graves:

  • TBII (thyroid binding inhibiting immunoglobulins)
  • TGI (thyroid growth immunoglobulins)
  • TSI (thyroid stimulating immunoglobulins)

You need ALL of these tests, because often your TSH and T4 will appear normal. Even though I had an abnormal TSH, my T4 level was near the top of the normal range! Other people have a normal TSH and are low on T4, or have normal TSH and T4, but their T3 shows up too low. Many doctors don’t even test T3, which is crazy. Even if all of your hormone tests look normal, your antibodies may tell a different story.

Even though many doctors do not consider a TSH of below 5 to be abnormal, I would suggest a cut-off of 1.5. The average healthy person has a TSH of 0.8. The Bell curve is extremely steep.

If your thyroid hormone panel turns out to be “unequivocally normal”, what you need to do is find a doctor who will consider treating you based on your symptoms rather than your blood tests. Such doctors can be found on Mary Shomon’s site. If your thyroid is normal, you would become thyrotoxic straight away from taking thyroid hormone. You should trial increasing amounts of thyroid hormone over several months, until you are thyrotoxic. Then you should go back down a dose. Then wait. It takes time for your body to heal.

It’s taken me nine or ten months to get this far, but now I’m here, I can’t tell you how incredible it is to be able to eat food again. When my thyroid has settled down, I’ll do a full salicylate trial and let you know the results.

Advertisements

Written by alienrobotgirl

4 January, 2010 at 12:33 am

Posted in Thyroid

17 Responses

Subscribe to comments with RSS.

  1. It wouldn’t surprise me. I know a couple of people from my group have since confirmed and treated thyroid problems and have recovered. The people who haven’t recovered are the people who haven’t investigated this cause properly.

    alienrobotgirl

    17 May, 2010 at 8:58 pm

  2. The group is defunct now. Essential tremor can be associated with poor thyroid function.

    alienrobotgirl

    17 May, 2010 at 9:15 pm

  3. I wonder if we all have this same cause…

    iggabod

    17 May, 2010 at 8:54 pm

  4. I replied on another blog post here. Are you the author?

    I have a fb group called citric acid allergy and all these people have the same problem.

    I did have some thyroid stuff tested but i dont know if he did all.

    my most recent allergist just dropped me after almost 2 yrs of the runaround. he has no clue.

    Ive been fighting with docs for years.

    have you heard of anyone getting tremor from this? i got essential tremor 7 years, more or less when most foods become intolerable.

    where is your group?

    iggabod

    17 May, 2010 at 9:01 pm

  5. That’s too bad the group is gone. I looked at the list of thyroid docs listed from your link for canada. no too many. i wonder if I can find a local doc who will test for this.

    Someone else in my citric acid group also mentioned something like this. but for her it was enzyme levels.

    thanks for keeping your posts up. I might never have figured this out. (well at least i hope it works). Please keep your blog up even if you no longer post for others to find this.

    I have had a very long string of docs who basically said it didn’t exist. “you cant be allergic to that many things”. uh yes you can if that one additive is in almost everything.

    iggabod

    17 May, 2010 at 9:22 pm

  6. So do you continue to take meds for this? Didn’t you react to the meds? for me – and the citric acid thing, it’s in 99% of meds too.

    iggabod

    17 May, 2010 at 9:23 pm

  7. I went to our walk-in clinic and told the doc what you said, and she gave me the form to get the proper blood work done.

    iggabod

    22 May, 2010 at 8:10 pm

  8. Interesting post. So is it safe to assume because you were able to eat chocolate, that you’re also able to eat other high-oxalate containing foods?

    cfsrecoveryispossible

    1 July, 2010 at 3:48 am

  9. Yes, I take levothyroxine, I will need to take it for the rest of my life, my thyroid is mostly dead now. No, no problems with citric acid.

    alienrobotgirl

    1 July, 2010 at 9:42 am

  10. Yes, I haven’t spotted a problem with oxalates.

    alienrobotgirl

    1 July, 2010 at 9:42 am

  11. I got the proper blood tests. Mine turned out fine. I don’t have this.

    back to researching…. thanks for your input tho.

    iggabod

    1 July, 2010 at 9:09 pm

  12. Have you read my info on the so called “normal” range and how many people with overt thyroid problems go undiagnosed because their results are defined as “normal” when they are ill?

    alienrobotgirl

    2 July, 2010 at 9:28 am

  13. In other words… the doc didn’t have a clue, ordered a test that produced a false negative, you believed it, and now you’re going to go investigate something else….

    alienrobotgirl

    2 July, 2010 at 3:57 pm

  14. I printed off the information from your page before I saw the doc. It was a walk-in clinic. I told her what’s up and tho she didn’t know a thing about it, she ordered all the tests for me.

    iggabod

    2 July, 2010 at 3:50 pm

  15. Have you tried salicylates yet?

    I am getting blood drawn this week for a thyroid antibody test. I was reluctant to consider the possibility of a thyroid issue, but it does seem to neatly connect ALL the other issues I’ve been trying to piece together. Except the salicylate intolerance. You’re the only person I’ve found to even mention those two things in the same article. I’m pinning some hopes on that being a thyroid-related liver-function issue, that will clear up if I can get a thyroid problem dx’ed and treated correctly. Update!

    methylethyl

    9 August, 2010 at 7:43 pm

  16. I was wondering if you’ve had a chance to do a full salicylate trial yet, and if so, what the results were?

    JonS

    29 March, 2012 at 12:27 pm

  17. I am no longer sensitive to salicylates. If my metabolism starts to fall, I can develop sensitivities again.

    alienrobotgirl

    29 March, 2012 at 1:13 pm


Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s

%d bloggers like this: