ENT referral

[Sunny537]

Hi I have Hashimoto's Thyroiditis and I am on 50mcg Levothyroxine. I have had trouble swallowing amongst other symptoms and my doctor is thinking about referring me to an ENT because my weight is now way below the healthy range for my size and age.

Weight: 6.9 stone/43 kilograms/94lbs
Height: 5'3"
Age: 29
BMI: 16.9 (18-25 healthy range)

Symptoms when I eat dairy:

- Constipation within 5-30 minutes of eating dairy
- Flatulence
- Noisy stomach
- Stomach cramps

Symptoms when I eat gluten/wheat:

- Constipation within 5-30 minutes of eating gluten/wheat
- Flatulence
- Noisy stomach
- Stomach cramps

My doctor has said what I have is not dairy or gluten/wheat intolerance but has not recommended any tests for me to undergo.

Other symptoms:

- Weight loss
- Fatigue
- Dry skin
- Dry eyes
- Dry mouth
- Joint pain
- Early/heavy/painful periods
- Difficulty swallowing
- Sick taste in my mouth after eating cheese/milk - sometimes I belch and it's almost as if the belch has gone into my lungs because all I can smell is sick. Sticking my head out of the window helps as does Chamomile tea.

Anti-TPO Antibody results:

Jan 2013 - 84 (0-34)
November 2013 - 41 (0-34)
March 2014 - 33.5 (0-34) - I had already gone gluten-free on the advice of an endocrinologist and a nutritionist.
August 2014 - 141 (0-34)

If anyone can answer, why have my antibody levels risen (almost quadrupled) when I went completely gluten-free for 3 months? My endocrinologist and nutritionist had said it was a surefire way the antibody levels would reduce and be non-existent. So what went wrong?

Thanks! :)

[Sunny537]

Yes, I can schedule the appointment for 6-8 weeks. :)

She has not said for me to be sent to an ENT or GI specialist because the appointment time was used mainly for the unrelated thing - I had leg cramps that I have had all night and into today and when I developed numbness and tenderness in my legs I then sought medical advice. So the 10 minutes was just her asking me all these questions.

I am hoping that at the next appointment I can ask to be referred and see what happens.

[Londres70]

Is she sending you to a GI Specialist or the ENT Specialist?  Maybe the GI specialist will agree with the 12 weeks?  I would definitely get the GI Specialist's opinion on board ASAP.

[Londres70]

Well, I am not surprised the ferritin is low as a couple of your symptoms correlate with that.  That's the easiest and one of the basic things a physician should check when a patient is complaining of fatigue.  Plus, you have this thyroid condition which will make you prone to problems with your iron/ferritin levels.

Do what you have to do...........just make sure she repeats that screen.  

I just feel 4 weeks isn't enough time.  6-8 weeks would even be better and 12 weeks is ideal.

Can you schedule the appointment in 6-8 weeks?

[Sunny537]

Thanks, I will keep you posted.

Update - I went to my doctor today for something completely unrelated and she said I looked tired. She looked at my ferritin which is low (only just in her words but low enough to me!) and suggested that if I have trouble with the iron tablets to introduce iron rich foods into my diet. She then asked me if I eat a normal diet and I said that due to the appetite loss no I have not been eating well at all. I then said I think that whatever I eat just doesn't agree with me and she said she will repeat the coeliac screen again if, after a month, I present her with a list of symptoms I get whilst on gluten, wheat and dairy and dedicate the whole appointment to just that.

At the moment I am eating 1 or more slices of bread per day. This morning I ate toast and this afternoon I added a slice of bread to some soup. The doctor also thinks a month is long enough. I don't think so somehow.

[Londres70]

I absolutely agree; 4 weeks isn't enough time at all.

Chinese noodles can be considered as pasta.  Make sure they are the noodles made from wheat.

I agree with your approach.

Keep us posted.

[Sunny537]

Thanks for this. :)

I have started the gluten challenge again and since I read that half a slice of bread or 1 whole cracker a day for three months is what the gluten challenge consists of I have started this off by eating Chinese noodles (which I presume are pasta) and two slices of toast (normal bread).

I will continue this until early January.

I am due to see my doctor in two weeks because I was put on Omeprazole for what she assumed was acid reflux. This has not helped and she said she would refer me to a gastro or ENT once I have told her the Omeprazole is not working.

I think that when I see the doctor at the next follow-up in two weeks I will tell her I have restarted the gluten challenge because I feel I did not have enough time for any antibodies to show up.

[Londres70]

Sounds like you need a Gastro Specialist.  

I would have that Celiac/Coeliac screen repeated.

[Sunny537]

The celiac screen done in January, was done 4 weeks after the endocrinologist ordered it.

Is it possible I did not leave long enough time between the gluten challenge and the actual test? I'm looking online at the usual time window given for gluten challenge and most sites say to leave 12 weeks. I only left 4 weeks but the endocrinologist just said I have to introduce gluten into my diet every day. She didn't say when the test needed to take place.

[Sunny537]

The doctor was torn between an ENT and a gastroenterologist. I'm not sure which one is best to go to.

Celiac screen was done in January to test for IgA antibodies - they were below 1 so were negative. Endocrinologist said this was gold standard.

Are there more tests to check for celiac?

[Londres70]

You are being referred to an ENT Specialist and not a Gastroenterologist?

No test done for Coeliac disease?