Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • Welcome to Celiac.com!

    You have found your celiac tribe! Join us and ask questions in our forum, share your story, and connect with others.




  • Celiac.com Sponsor (A1):



    Celiac.com Sponsor (A1-M):


  • Get Celiac.com Updates:
    Support Our Content
    eNewsletter
    Donate

Thyroid Question!


Danijela

Recommended Posts

Danijela Contributor

HEY ALL!!!

I have been having problems with my throat/ neck for some time now... I've been waiting for an appt. with a specialist for just over 7 weeks now.... My GP said my throat is really red inside.... I find that in the evening and mornings I have difficulty swallowing it almost feels like what I swallowed (liquid or food) is stuck in my throat (more in my neck sort of if that makes any sence) my thyroid is swollen at times I can feel with my hands that one side is noticably bigger than the other... my voice goes hoarse and it hurts went I talk for extended periods of time....my hands and feet are always cold and its weird my even when I don't feel cold my skin is freezing to the touch (arms lower back and stomach ive noticed the most) I'm still having sugar problems as well...

I mentioned this before in another posting... I didn't get much of a respose

If anyone has any wisdom for me it would be greatly appreciated!!!:)


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



Jnkmnky Collaborator

Could reflux be causing some of the throat symptoms???? An ultra sound can be ordered by your primary care dr for your thyroid. You shouldn't have to wait to see a specialist to get that done. I just had it done... found two lumps... oh joy! <_< Also, blood tests can be ordered by your pcd. That will tell you quickly if your thyroid is functioning properly. Why havent these things been ordered while you wait for the specialist? If you get them prior to seeing the speicalist, then you have something to show him for him to evaluate and get things moving much more quickly. Call your regular dr and ask for those tests!

Rachel--24 Collaborator

I agree with the last post. You dont need to see a specialist to have your thyroid levels checked...its just a bloodtest. If you're having that much trouble and obvious swelling why havent they ran the bloodtests. Its pretty standard...your GP can order them. Sounds weird that you've been waiting this long....they should be able to tell fairly quickly whether its your thyroid or not. I've had a million thyroid tests over the last 5 years and it wasnt necessary for the specialist to order them...I was only sent to the specialist when I was officially dx'd with Graves Disease.

Danijela Contributor

hello

thank-you for your responses...

My gp wont order the tests he says there is no point that the specialist is just going to run his own tests anyways...

I think he has lost interest the last thyroid blood test i had was exactly a year ago and it was normal....

I heard that it can take up to a year for the blood test to be high or low....

I don't know but i'm fed up of waiting when i feel so terrible everyday...

my blood pressure is up today i'm cold and just feel off can't really put my finger on it...

I just pray that specialist can see me soon and actually help me...

jnkmnky what are the docs going to do about the lumps?

I am going to ask for an u/s because there is something there

i also wanted to ask does anyone know if shortness of breath is a symptom of this or does it happen to anyone else ... it seems that since my throat has become an issue i get winded very easily doing simple things like cleaning or walking up a flight of stairs....

the bottom of my feet are numb quite often aswell

thanks again!!

Danijela

Pegster Apprentice

When you say your hand and feet are numb, are they turning white with the blood taking a while to get back into them? Do they tingle painfully when the blood goes back into them? This could be Reynaud's phenomenon. If they are just numb and cold it could be that your thyroid is underactive. I think you need to find a GP who will take the time to listen to you. My thyroid tested normal, but then was off just a few months later. I have been on meds for two years, but they have to be adjsted constantly because my thyroid is all over the place. The symptoms for an underactive thyroid include : coldness, dry skin, hoarseness, hair drying out or falling out, tiredness, and weight gain. Good Luck to you!

elye Community Regular

I'd bet a million to one you've got hypothyroidism, and it is bizarre that your GP hasn't given you the standard blood test yet. I've got an underactive thyroid, and have been on the replacement hormone for a couple of months. I wasn't really symptomatic, just a general tiredness, but you have the CLASSIC symptoms: swollen neck where the thyroid gland is located, hoarse voice, freezing hands and feet, exhaustion...

Jnkmnky Collaborator

I'm being haunted by the dr right now to go get...an mri? I think he wants?? Or a cat scan? I forget. His office calls me three times a week to see if I've schedualed it. To rule out cancer. Fun. :blink: But I'm apparently in no hurry. Maybe it's pathological denial? Whatever. I've been busy with Easter and spring break with my kids. I'll make my drz day next week.


Celiac.com Sponsor (A8):
Celiac.com Sponsor (A8):



Celiac.com Sponsor (A8-M):



tiredofdoctors Enthusiast

I had hypothyroidism, including a goiter that grew inward vs outward. I had to have a barium swallow, then a video swallow. It showed that the muscles on the left side of my throat, up in the top, weren't working very well. It wasn't due to the thyroid, though, it was due to the neurological damage I had. I also had the red throat, hoarseness, etc. THAT was caused by Gastro Laryngeal Reflux -- I took Nexium for a month, stopped drinking soda, and I haven't been hoarse since. I would still look into the thyroid thing, though -- I had Hashimoto's thyroiditis, and a bunch of complications that are too boring to mention! Good luck to you, . . . . Lynne

Guest jhmom

Hi Danijela,

From someone with Hashimoto's (thyroid disease) I think you are doing the right thing by seeing the specialist (Endo) especially if you notice inflammation of your thyroid. In my experience GP's don't always read thyroid levels as a specialist does, after all that IS what they specialize in and your GP would most likely not know what to do about the inflammation. It was explained to me like this " you wouldn't see a dentist if your leg was broke, would you?" Makes sense.......

Hang in there, the appt time will be here before you know it. :)

Rachel--24 Collaborator
Hi Danijela,

From someone with Hashimoto's (thyroid disease) I think you are doing the right thing by seeing the specialist (Endo) especially if you notice inflammation of your thyroid. In my experience GP's don't always read thyroid levels as a specialist does, after all that IS what they specialize in and your GP would most likely not know what to do about the inflammation. It was explained to me like this " you wouldn't see a dentist if your leg was broke, would you?" Makes sense.......

I agree its good to be scheduled with the Endo. but it would be much BETTER if the bloodtests have been taken BEFORE she sees the Endo so that the appt. will be much more useful. Once I got diagnosed with Graves and had my CT scan and uptake test I was seeing my Endo. every 3 months for that first year and I always did bloodwork the week before my appts. so that there was something to look at and discuss. Without the bloodwork the Endo will have nothing to go by other than feeling the thyroid gland but he/she will still want to see the bloodwork before anything else. I still think the GP should be ordering the tests now since it seems obvious this could be thyroid related.

tammy Community Regular

As a person with hypothyroidism and with the need for two thyroid medications, I do agree with both of you. It is most wise to at least, at the very minimum, to have a blood test to give the endocrinologist something to work with for the first visit. Of course, it will take an additional 7 days once you get your blood tests taken to know the results. Once you are in the specialists office, the doctor will examine you and then order several blood tests. Be sure to tell him/her all of your symptoms. This will alter which blood tests to order. Especially IF you should need more than one medication to manage your health. I would also schedule a second visit with your specialist now. IF they allow it, because they usually have a waiting period for office appointments.

I would start charting your symptoms. Daily record keeping is best but unless you have a super memory then weekly record keeping is helpful too. Try to record little symptoms too. If you get headaches, when do they occur. How long have you had your symptoms etc.

P.S. Maybe its time to get a different primary care physician. I have found that an Internist is usually better at listening and assisting his thyroid patients in finding the proper care. Of course, it is also important to find one that is a good doctor and one that you feel comfortable with. :D

ms-sillyak-screwed Enthusiast

I agree with everything that is said here. I would just like to add something here.

I also developed a serious thyroid problem. And I found out the hard way the drugs they give us, either have corn, gluten, or dairy in many of them. So please check if you are put on the medication.

Another warning -- the dye used in the thyroid pills most times are cross-contaminated with GLUTEN. I have been on a mission calling drug companies to find out about a problem with the what is in the dyes they use. And I was alarmed to find the drug manufactures are buying the dyes from companies that run gluten on the same lines they are making their other drugs, and the reason for cross contamination. I was allerted by my doctor when she said some patients can't tolerate the dyes in the colored pills.

SO -- the solution is -- have your thyroid medication made by a COMPOUNDING RX. They will make it free of all the things that can be making us sick(er).

My last thought is -- If you are having a thyroid problem give up the SOY (it's bad for many of us and many docs give out the wrong info about it). Some here don't believe it -- just a thought to play it safe.

  • 1 month later...
Danijela Contributor

hey there!

well just as i had thought the thyroid test came back negative.... following the trend i guess

i still don't have an appoint with the endo guy i called them and he said hopefully in late august or september i don't want to go through another summer like this....

I am going to be making a seperate post about insulin levels if anyone has any advice for me please respond here or check out my new posting

thanks so much for all your support!!

  • 2 weeks later...
prinsessa Contributor

I just wanted to respond to your post about the blood test being normal. My mom thinks I have hypothyroidism (constantly tired, cold, dry skin, etc.). She gave me some info on hypothyroidism. It said that the blood tests are not 100% accurate (I guess like with gluten intolerance). There is a test you can do yourself where you take your temperature every morning before you get out of bed. I think if your temp is under 97.2 for 3 days you might have an underactive thyroid. I'm not totally sure about the specifics, but you could look for more info online or ask the doctor about it. Good luck!

momandgirls Enthusiast

You mention that your thyroid tests came back negative...which tests did they do exactly?

Danijela Contributor
You mention that your thyroid tests came back negative...which tests did they do exactly?

Hey Momandgirls

I am going to look further into the temp thing i'll have to look it up though especially because in canada we use celcius.

the tests that were run were tsh, t3 and t4

thanks for the great idea!

momandgirls Enthusiast

The reason I asked about what tests were run is that Hashimoto's thyroiditis is diagnosed by an elevation of thyroid antibodies with all other thyroid bloodwork being normal. I also have thyroiditis. Thyroiditis is an inflammation of the thyroid gland. It is fairly common (mostly in women) and there is no real treatment. It goes away on its own (I've had it for eight months now and it's not gone yet - I believe it can take up to a couple years). My main symptom is feeling like I'm choking. The only thing to do is try to avoid iodine - iodine won't hurt you if you have it but the thyroid absorbs it so, when you ingest it, your thyroid will get a bit larger. Iodine is found in soy, seafood (actually, it's in anything that comes from the ocean), iodized salt, etc. As a general rule, most people with thyroiditis will eventually get hypothyroidism. It may not happen for several years, though, and hypothyroidism is every easily treated with medication. I would urge you to have the blood test for thyroid antibodies and see an endocrinologist. Good luck!

CarlaB Enthusiast

Do a search for Broda Barnes on the internet. He is the doctor who did the research on the basal temperature for the thyroid test. It's how I keep tabs on mine, and I take a thyroid from the health food store. Whenever my doc has taken a thryoid test, it's come out normal because I'm taking care of it on my own.

It does matter what time of the month you take the test as your temp. goes up naturally after ovulation.

  • 1 month later...
Danijela Contributor
You mention that your thyroid tests came back negative...which tests did they do exactly?

wow i some how missed this response sorry!!!!

i had a tsh t4 and t3

Guest Robbin

Carla, I know it has been awhile since you posted this, but what thyroid med do you get at the health food store? I have all the symptoms -cold extremities, hair loss, tender sore throat/neck, low body temp. -my dr. did only the t3, I believe and said it was normal, but I am eating very little, and not much weight loss and the other symptoms-not to mention tiredness-are getting worse. I am disgusted with drs. and really really want to take my health back and not be patronized any longer. Can you all relate? :)

Danijela, I hope you are getting along better and have some answers. Take care.

loraleena Contributor

It definitely sounds like thyroid. Make sure you get your thyroid peroxidase antibodies checked. This checks to see if your body is making antibodies against your thyroid. All my tests were normal, except this. This is called Hashimotos Thyroid disease. It is autoimmune and common in celiacs. They should be under 20. The tsh is a completely useless and very inacurate test. Yet, it is the standard among all our brilliant doctors. (HA HA). I suggest you check out the web site of Dr. Lowe.com.

zip2play Apprentice
well just as i had thought the thyroid test came back negative.... following the trend i guess

Don't stop there girl. Have someone sonogram your thyroid. My levels have been checked for over a year. ALWAYS were they normal. But I am cold, tired and have weight creaping up. Just a couple weeks ago did they finally sono my thyroid. I have 8 nodules and a cyst on it. You can have Hypothyroid and have numbers that are normal. Thus far none of my nodules are large enough to do a needle aspiration. But one is getting close. I have to go back in January to have it evaulated again. They did start me on thyroid meds. New studies show multiple nodules can benefit from meds. They should help slow if not stop the growth of them thereby helping lesson the chances of full blown Hashi. Keep pushing them. Thyroid issues can mess up a lot of things.

Monica

Archived

This topic is now archived and is closed to further replies.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,187
    • Most Online (within 30 mins)
      7,748

    Kris46
    Newest Member
    Kris46
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • Ginger38
      So I recently had allergy testing for IGE antibodies in response to foods. My test results came back positive to corn, white potatoes, egg whites. Tomatoes, almonds and peanuts to name a few.  I have had obvious reactions to a few of these - particularly tomatoes and corn- both GI issues. I don’t really understand all this allergy versus celiac stuff. If the food allergies are mild do I have to avoid these foods entirely? I don’t know what I will eat if I can’t  have corn based gluten free products 
    • Kris2093u4
      Geography makes a difference.  I'm in the West and Trader Joe's gluten-free bread tastes great and is a better price than most gluten-free breads sold elsewhere in my area.  
    • JForman
      We have four children (7-14 yo), and our 7 year old was diagnosed with NCGS (though all Celiac labs were positive, her scope at 4 years old was negative so docs in the US won't call it celiac). We have started her on a Gluten Free diet after 3 years of major digestive issues and ruling out just about everything under the sun. Our home and kitchen and myself are all gluten-free. But I have not asked my husband/her dad or her other siblings to go completely gluten-free with us. They are at home, but not out of the home. This has led to situations when we are eating out where she has to consistently see others eating things she can't have and she has begun to say "Well, I can't have <fill in the blank>...stupid gluten."  How have you supported your gluten-free kiddos in the mental health space of this journey, especially young ones like her. I know it's hard for me as an adult sometimes to miss out, so I can't imagine being 7 and dealing with it! Any tips or ideas to help with this? 
    • Jane878
      By the time I was 5 I had my first auto0immune disorder, Migraine headaches, with auras to blind me, and vomiting, sensitivity to light and sound. I was 5 years old, and my stepfather would have pizza night, milling his own flour, making thick cheesy gluten pizza, that I would eat and the next day, I would have serious migraines, and my mother & stepfather did nothing about my medical problems. When I was 17 in my first year at college, I was diagnosed with my 2nd known auto-immune disorder, Meniere's disease. I was a elite athlete, a swimmer, and soccer player. And once again my parents didn't think anything of understanding why I had a disorder only older people get. Now after my mother passed from Alzheimer's disease she also suffered with living with gluten. She had a rash for 30 years that nobody could diagnose. She was itchy for 45 years total. My brother had a encapsulated virus explodes in his spleen and when this happened his entire intestines were covered with adhesions, scar tissue and he almost lost his life. He has 5 daughters, and when I finally was diagnosed after being pregnant and my body went into a cytokine storm, I lost my chance to have children, I ended up having Hashimoto's disease, Degenerative Disc disease, and my body started to shut down during my first trimester. I am 6ft tall and got down to 119lbs. My husband and I went to a special immunologist in Terrace, California. They took 17 vials of blood as we flew there for a day and returned home that evening. In 3 weeks, we had the answer, I have Celiac disease. Once this was known, only my father and husband made efforts to change their way of feeding me. At the family cabin, my stepfather & mother were more worried that I would ruin Thanksgiving Dinner. It wasn't until one of my cousins was diagnosed with Celiac disease. They finally looked into getting Gluten Free flour and taking measures to limit "gluten" in meals. He did nothing but ask for me to pay for my own food and wi-fi when I came to the cabin to stay after our house burned down. When he informed my mother, they proceeding to get into a physical fight and she ended up with a black eye. The is just more trauma for me. Sam had no interest in telling the truth about what he wanted. He lied to my mother that he had asked my husband if I could pay for "food" when he asked Geoffrey if I had money to pay for my wi-fi. My mother hates when he spends so much time on the computer so he lied and said I could pay for my own food. I will remind you I weighed 119lbs at this time. (At 6ft) that is a very sick looking person. Neither parent was worried about my weight, they just fought about how cheap my stepfather was. As my mother was diagnosed with Alzheimer's disease in 2014. He had her sign over the will to a trust and added his children. He had no testimonial capacity at the time, so she signed without proper papers. Making this Trust null and void. When I gave my brother my childhood home, my mother stated I would be getting an equal part of inheritance to the house on Race. It currently worth 2.0 million $. I got nothing, and my stepfather has since disowned me b/c of my claim and he knows that my mother would never have left it uneven between my biological brother and myself. She sat me and my husband down, as we lived at the Race Street house and treated and took care of it as our own. My brother took over b/c he was going through a horrific divorce and needed a home so he could get a better custody deal with his soon to be ex-wife who was a Assist DA for Denver. She used the girls against him, and he & I were the primary caregivers. We, Judd and I spent the most time with them pre the divorce. Once Judd moved into the house, he threw all of my mother, grandmother and my family heirlooms out to the Goodwill. Nobody told my mother about this as she was going through cancer treatment and had Alzheimer's disease in her mother and her sister. My stepfather and biological brother took advantage of this matter, as I called a "family council" that my brother just never could make it to at the last moment. All of the furnishing, kitchen ware, everything was in the house my brother just moved into. He had had 2 weddings, I chose to elope b/c my stepfather ruined my brother's first wedding by talking about his relationship with my brother in front of my dad and his entire family, insulting him and having my grandfather leave the ceremony. It was a disaster. My stepfather just plays dumb and blames my father for the slight. I was the only child not to have a wedding. So, my mother and stepfather never had to pay for a thing. My mother had had an agreement with my father he'd pay for college and all medical issues with their kids, myself and Judd. So truly my mother never had to pay for anything big for me in her entire life. I am looking for anyone that has had a similar story, where they grew up in a household that had a baker that regularly milled flour and ate gluten. What happened to you? DId you suffer from different auto-immune diseases b/c of living with a baker using "gluten" Please let me know. I have been looking into legal ways to get my stepfather to give me what my mother had promised, and he erased. Thank you for listening to my story. Jane Donnelly  
    • trents
      Possibly gluten withdrawal. Lot's of info on the internet about it. Somewhat controversial but apparently gluten plugs into the same neuro sensors as opiates do and some people get a similar type withdrawal as they do when quitting opiates. Another issue is that gluten-free facsimile flours are not fortified with vitamins and minerals as is wheat flour (in the U.S. at least) so when the switch is made to gluten-free facsimile foods, especially if a lot of processed gluten-free foods are being used as substitutes, vitamin and mineral deficiencies can result. There is also the possibility that she has picked up a virus or some but that is totally unrelated to going gluten-free.
×
×
  • Create New...