Thyroid Problems

[Alexandra]

I found out last week that I have sub-clinical hypothyroidism after going to my GP witha complaint of fatigue. She took a few blood tests, iron, TSH and vitamin B12. My TSH is 5.28, but I've been so tired for about 5 months, so I think this is a greater imbalance for me and my t3 and t4 are normal apparently but those weren't noted onthe blood req so I'm not sure how she knows that (here they generally haveto be noted or they won't be tested but maybe that's changed ).

I've read a lot on the net that many specialists feel the normal range should be moved from 2 - 5 to 2 - 3, if this is true, I'm off mark for sure! My body temp has been 96.5 for about 3 years! But in truth it has always run lower than 97.5 my entire life. I'm upset because my family doc is reluctant to medicate me and thinks that a referal to an Endocronolgist won't help as I'm sub-clinical but I feel that dealing with these conditions on daily basis the specialist may have a differing opinion. Never mind the fact that when I was a child I was hyperthyroid (it corrected itself and my TSH is tested yearly now), my mother is hypo and has been for the last 20 years (which my GP is aware of). I don't really want to leave it as my mom was sub-clinical for about 6 -8 months and than had a such a severe drop in a 3 month period they thought her blood tests had been mixed up, her GP said it usually takes years and years to get as low as she was, not within a few months...

My skin is dry, I can't remember anything and I'm tired all time and kind of feeling 'detached' both of which are starting to depress me. Just give me the damn referal already!! She's wants to send me to an Internist, which I don't understand, Endocronologists are Interists who have sub-specialized...On top of all that my GP's office takes FOREVER to call in referals, it'll be July or August until I'm seen. I just don't want to be tired anymore. It's not as bad as the fatigue I experienced when I was diagnosed with celiac disease, but still trying.

Hi.

The American Association of Clinical Endocrinologists in 2003 issued new guidelines saying TSH should be between 0.5 and 3.0 -- not as high as 5.0 (which used to be believed to be OK). Many doctors are not aware of this. Here is a link to the AACE press release: Open Original Shared Link and to their clinical guidelines: Open Original Shared Link.

If you can, I'd skip the GP referral and just refer myself to an endocrinologist. This is what I did; of course, your insurance situation may make self-referral impossible. I found mine using this website (and I adore her): Open Original Shared Link. I'm not 100% sure you're in the US, but it does include information on doctors in some other countries as well.

If you used to be hyperthyroid and are now hypothyroid, chances are good you have anti-thyroid antibodies (ATAs); people with ATAs often become symptomatic with TSH at lower levels than do people without them. And respond well to treatment. Definitely worth pursuing.

-- Alexandra

[smack]

Hi.

If you can, I'd skip the GP referral and just refer myself to an endocrinologist. This is what I did; of course, your insurance situation may make self-referral impossible.

-- Alexandra

Thank you for that information! Unfortunately I cannot self refer (I would if I could), I'm in Toronto and as it's public healthcare here, everyone must be referred through their family Doctor or by another specialist they see. So perhaps I will approach the Internist about seeing an Endocrinologist. My GP wants to send me to the Interist because "there are many things that cause fatigue so he should test you for other things as well"...but it couldn't be the more obvious thyroid issue I seem to be having I was just surprised that she would be so dismissive of a thyroid condition considering I'm presenting many of the symptoms and have a history. But they called me and I see the Interist this Monday, so hopefully he will try medicating me!

[debbiewil]

I'm hypothyroid as well, and I hate to tell you, but most doctors are as ignorant of thyroid issues as they are of celiac/gluten issues. They can easily spend as many years or more missing thyroid problems as gluten problems. The problem is - doctors only look at blood tests. The latest research is showing that the blood tests only identify about 10% of people who have thyroid problems. So the rest sit in never never land and just get worse for years until they are bad enough that the tests can measure them (or they die - actually happens more frequently).

If you want to read some good books on thyroid, try Hypothyroidism Type 2 by Dr. Mark Starr or Thyroid: Guardian of Health by Dr. Young.

Both books point out that the "gold standard" blood test, TSH, actually doesn't have a thing to do with the thyroid - it measures a pituitary hormone. So if the pituitary isn't working correctly, your TSH will be off, and the doctors will never catch a thyroid problem. And there are a lot of other factors as well - adrenals work closely with the thyroid, so a problem there can mess up your thyroid tests, which doctors won't catch. Also, if the adrenals are messed up, people often get the sudden HYPER symptoms when they start thyroid meds for hypothyroid, or a flip/flop syndrome - drag part of the time/bursting with energy the rest. But if you go to a doctor with those symptoms, he'll cut the dose of thyroid med, instead of adding adrenal meds, which is what he should do.

Anyway, we all know how uninformed doctors are about celiac, well they are just as uninformed about thyroid. If you have or think you may have thyroid problems, you'll need to do the research yourself, because the doctor won't.

Debbie

[ms-sillyak-screwed]

Thank you DonnaD -- Open Original Shared Link I'm going to read this it looks really good!

[Alexandra]

Thank you for that information! Unfortunately I cannot self refer (I would if I could), I'm in Toronto and as it's public healthcare here, everyone must be referred through their family Doctor or by another specialist they see. So perhaps I will approach the Internist about seeing an Endocrinologist. My GP wants to send me to the Interist because "there are many things that cause fatigue so he should test you for other things as well"...but it couldn't be the more obvious thyroid issue I seem to be having I was just surprised that she would be so dismissive of a thyroid condition considering I'm presenting many of the symptoms and have a history. But they called me and I see the Interist this Monday, so hopefully he will try medicating me!

Ooh bummer (though Toronto is lovely!). Good luck...hope you can get the referral.

-- Alexandra

[sweetp]

When I found out I was gluten intolerant (blood test very positive and positive response to dietary changes) I also found out I was hypothyroid. All I have to say is being hypothyroid sucks badly. I play basketball for the University of Missouri-St. Louis, and our coach weighs us. I can't tell you how embarrassed and frustrated I am when I weigh more than I know I should even though I eat carrots and lean meats all day (I am on the Specific Carbohydrate Diet), and trying to explain any biology or biochemistry to him would be like trying to teach your dog how to fly an air plane.

I am just wondering who else has thyroid problems as well!

i feel your pain, i was diagnosed wiht hypothyroidism as well! Are you on medication? i am, and it has helped with the extreme tiredness and dry shkin.

[smack]

Well I saw the Internist, after I asked if it were possible, he started my .25 of synthroid. He didn't want to do it himself but agreed that it wouldn't hurt if I gave it a shot. LOL he asked me about my symptoms of celiacs, which were for me atypical. I had constipation, tingling and numbness in my extremities (I saw a neurologist about that as well, they then had to rule out MS, man that was scary), extreme fatigue, the feeling of being drugged AND pumped full of air after I ate. Then he excused himself and went and googled neuropathy symptoms and celiacs and came back and confirmed what I had said! Yes thank you, I've done a bit of research myself Doctor Then he asked me(!) how many people also note having alopecia areata and celiacs (I have alopecia) I said it was my experience (through these boards and through others I know) that it was less than the number of people who mentioned, depression/anxiety, other immune disorders, fatigue. He then said yes, many people with one immune disorder will often develop/have others.

He ruled out fibromyalgia, Chronic fatigue etc. He wants me to see a neurologist about the memory problems! And to possibly get an MRI - my god. He also wants me to have a scope for my celiacs, to see what's happening. I wasn't diagnosed by either a blood test or biopsy, my old family doctor basically said, if these things make you sick when you eat them then it's celiacs - and don't eat them! So I don't know what the internist wants to do, confirm it through a biopsy or something? It did a blood test but I'm not sure what that is going to prove since I've been gluten free for 4 years...I'm wondering if the GI Doc will make me start eating gluten again for the tests...oh boy. It may be ugly but really I'd like to know for sure, so I'll probably go a head and do it. The internist mentioned that many people who are celiac and gluten-free will still complain of fatigue so he wants to see if that is also part of the problem and if indeed I actually have it. It's going to be an interesting summer!

[ms-sillyak-screwed]

Well I saw the Internist, after I asked if it were possible, he started my .25 of synthroid. He didn't want to do it himself but agreed that it wouldn't hurt if I gave it a shot.

I just wanted to warn you about the ingredients in our thyroid medication. If you have a problem with gluten, dairy or corn you might have a problem with mainstream thyroid meds. I found out the hard way.

The drug companies don't tell us that they buy their dyes (in all colored pills) from companies that process gluten in their other pills factory lines. It causes cross contamination (CC) It has become a problem for us and most of us don't know why we aren't getting better. I have been forced to go to a compounding pharmacist. They will make your thyroid medication without the binders and dyes that make us Celiac sick. It had helped me a lot!

If you need one. I'll post a link to help you.

AS far as getting tested for celiac disease. Why bother make your sick body sicker by pumping yourself for several weeks to get a positive test result??? If you don't have ENOUGH gluten in your system you will get a false negative. A few days won't do it, a few weeks might. I'm a celiac that experiences seizures from it and all these secondary food allergies too. If you are reactive to these food groups there is your answer.

Have you looked into seconary food intolerance/allergies to legumes (soy family), nuts, corn, potatoes, opr dairy??? Many of us Celiacs develop seconary food problems, it's a matter of time. Kepp a food body journal. everything that goes in your moth and comes out of your body and how will give you an indication of what works and doesn't.

Oh, one last thing -- I don't know if I posted it here in this thread, or not. But do yourself a favor and REMOVE SOY from your diet. If you have thryoid problem SOY is poison. It is documented in many of the new books about thyroid and celiac disease that have come out in the past year or so. Mainstream isn't going tell you SOY is bad, just like they don't believe gluten can kill. It does. I know first hand. I wish someone told me about the SOY and thyroid problems 5 years ago when I went gluten & dairy free.

[smack]

AS far as getting tested for celiac disease. Why bother make your sick body sicker by pumping yourself for several weeks to get a positive test result??? If you don't have ENOUGH gluten in your system you will get a false negative. A few days won't do it, a few weeks might. I'm a celiac that experiences seizures from it and all these secondary food allergies too. If you are reactive to these food groups there is your answer.

Have you looked into seconary food intolerance/allergies to legumes (soy family), nuts, corn, potatoes, opr dairy??? Many of us Celiacs develop seconary food problems, it's a matter of time. Kepp a food body journal. everything that goes in your moth and comes out of your body and how will give you an indication of what works and doesn't.

Oh, one last thing -- I don't know if I posted it here in this thread, or not. But do yourself a favor and REMOVE SOY from your diet. If you have thryoid problem SOY is poison. It is documented in many of the new books about thyroid and celiac disease that have come out in the past year or so. Mainstream isn't going tell you SOY is bad, just like they don't believe gluten can kill. It does. I know first hand. I wish someone told me about the SOY and thyroid problems 5 years ago when I went gluten & dairy free.

Thanks for the reply Ms Sillyak Screwed. I don't have any other food allergies or intolerances (besides lactose intolerance that has pretty much gone away). I was tested for food allergies and have not experienced any discomfort or other issues from food, except that ketchup gives me heartburn! But I still eat it cuz I love it with home fries I never eat soy, I tried to incorporate into my diet at a mild level a few years back, But I just didn't like it unless it was deep fried and that's not healthy! As for the scope, I know what you're saying, but for own mind I must know for sure. I was annoyed at my docotor when I found out that there were tests that he had never sent me out for. If I go to the docotr with a valid complaint, I want the tests done so as an accurate diagnosis as possble can be made, as I'm sure others do too. But since the GP I had then sucked , I'm not surprised he didn't run any tests for me. It has bothered me these past 4 years, not truly knowing, it may make me sick but at least I will know.

[indyceliac]

hypothyroid here too..took going to the endocrinologist to get a correct diagnosis. GPs are useless.

I take synthroid.

[watchthestars]

alrighty, one more hyopthyroider checking in here. as with everything else, i've never been officially dx'd, meaning never had a medical test. i've just been diagnosed by daddy - a chiropractor who does so much more than adjust bones. since fourth grade i've been taking vitamins and natrual supplements to boost my thyroid and they SORTA worked. wasn't till i started getting stricter about my gluten diet that my thyroid really started to heal. i have more energy now then i ever thought possible, and my hair stopped falling out!!! if it had kept falling out at that rate, i probably would be bald in 5 years i've lost 15 unwanted lbs in the past several months without going hungry at all and i'm amazed!

DTRAVIS - do you think the hormone replacement theapy contributed to your thyroid condition? my mom has been trying hormone replacement therapy (which we've concluded is useless) and recently developed hypothyroidism. she's been unsuccessful with the thyroid meds i feel bad for her as i know how much it sucks. and also, tired, unhappy mom = unhappy household.

[sjc]

I have Hasimotto's Thyroid Disease since 1987. I also have Narcolepsy, cataplexy, arthritis, Restless Leg Syndrome and Celiac disease. It is awful. I can't seem to lose weight, my legs and feet hurt, so tired all the time, no energy, sensitive to heat and cold, always thirsty and just don't want to do anything.

[inquirer]

One more hypothyroid here. I also have psoriasis and used to have irritable bowel until I stopped eating bread. It wasn't until I started learning about celiac (for my husband) that I made the connection between removing bread and the irritable bowel. I haven't bothered to have myself tested for gluten sensitivity because I already know I feel better without it.

Hypothyroid can make you really miserable and if it isn't properly treated you're still miserable and thinking it must all be in your head because you still feel lousy. Make sure your TSH levels are corrected after treatment and try to get a thyroid medication that has T3. It'll make a big difference. Check out Mary Shomon's (sp?) book and or website.

[ms-sillyak-screwed]

Open Original Shared Link

[Kataza]

Hi, I was diagnosed a year ago with hypothyroidism [treatment: Eltroxin, alternating 0.1 and 0.05 on alternate days]. About two months ago I got very tired, suffered hairloss, loss of interest in anything other than napping, really.

I of course did my thyroid test - but that was fine. So, now have decided to try a gluten-free diet. My mother has celiac's disease. [Now, I had NO idea there was a link until I started prowling the internet.]

I have been gluten-free for a week [barring an unfortunate incident involving a taco] and I feel a huge difference. It's too soon to say about the hair loss but suddenly my spirits have lifted and the dazed, confused feeling has lifted. In short, I feel great.

alrighty, one more hyopthyroider checking in here. as with everything else, i've never been officially dx'd, meaning never had a medical test. i've just been diagnosed by daddy - a chiropractor who does so much more than adjust bones. since fourth grade i've been taking vitamins and natrual supplements to boost my thyroid and they SORTA worked. wasn't till i started getting stricter about my gluten diet that my thyroid really started to heal. i have more energy now then i ever thought possible, and my hair stopped falling out!!! if it had kept falling out at that rate, i probably would be bald in 5 years i've lost 15 unwanted lbs in the past several months without going hungry at all and i'm amazed!

COULD YOU SAY MORE ABOUT THE FIRST FEW MONTHS STRICTLY GLUTEN-FREE? I'M JUST STARTING [FOOL THAT I AM! WHY DID NOT THINK MY MOM'S WEIRD "ALLERGY" MIGHT BE SOMETHING THAT APPLIED TO ME?]. I'M A WEEK INTO IT AND FEELING GREAT! BUT I'D LIKE DETAILS (IF YOU DON'T MIND SHARING): WHAT WAS THE PROCESS? WHEN DID HAIR LOSS STOP? DID IT ALL GROW BACK? HOW FAST DID YOU LOSE THE WEIGHT? DEPRESSION AND ANXIETY GONE? NEW ENERGY? I'D LOVE A TIME-FRAME [OF COURSE, IT'LL BE DIFFERENT FOR EVERY PERSON). thanks very much!

[ms-sillyak-screwed]

I did some home work on the medication you are on, and might be the cause of some of your side effects. It has Corn, Dairy & Legumes (soy family). For many Celiac's we develop multiple secondary food allergies, and these three are the top three to avoid. Many of us have found if you take thyroid medication and have celiac disease we tend to want to avoid SOY. A compound RX can make fee of the allergens causing a problem.

Open Original Shared Link Open Original Shared Link

50µg tablets:

Thyroxine, Lactose monohydrate, Cornstarch, Acacia powder, Magnesium stearate

100µg tablets:

Thyroxine, Lactose monohydrate, Cornstarch, Acacia powder, Colorcon Yellow LB282, Magnesium stearate

-----------------------------------------------------------

My celiac disease story is blogged.

Hairloss is cause by my thyroid, for me. It took about 3 months before it stopped. And when it starts again, I know it SOY does it. And it also causes me to have a loose stool.

[Kataza]

Thank you! I will look into it. I will discuss with my GP the notion of a mixture of cytomel and eltroxin, perhaps.

Right now, I'm in a honeymoon phase with the gluten-free diet! I feel so energised and happy. Perhaps the gluten has been blocking serotonin uptake?

I will read your blog too. I hope I see better hair in three months! That would be wonderful.

Having roamed the bookstores while I'm here [visiting Boston from South Africa, where I live] it is surprising that so FEW hypothyroid books even mention celiac issues. And if they do they mention it simply in passing.

[utdan]

This is a revision of a post I did yesterday because I tend to think outside the box sometimes...please read the following with a grain of salt. I visited a competant NAET certified chiropractor and somehow using my energy field or subconscious brain he normalized my thyroid hormones and my symptoms disappeared. If that sounds like it came out of a comic strip no argument there. Previous to that I did not get medically diagnosed but had to take Armour because symptoms were getting stronger. After NAET, I got lab work to confirm I was at (trying to remember) 2.4 TSH. I can't seem to explain it away no matter how much I try. Unless I never had it in the first place and I was experiencing something wierd that I mistook for hypothyroidism and coincidentally got better at the right time or somehow the placebo effect kicked in?

[PreOptMegs]

How many people take Armour? Synthroid? Anyone switch from one to the other? Also, what is your opinion on what your TSH needs to be to feel your best. I was at a TSH of 2.3 or so and not losing a single pound.....

[ms-sillyak-screwed]

-

[jennifervan]

New here.

Last year I was losing my hair and gaining wieght I did not know I had Celiac. My thyroid was tested and it was borderline "HYPO" a couple of weeks later it was retested and it was "NORMALl" so they did not want to treat it.

Then, this past winter I discovered I was Celiac. I was so excited because my symptoms left me and my hair stopped falling out after a couple of weeks.

However, a couple of weeks ago I started exercising and I started gaining wieght...I thought it might be muscle but it was 6 pounds in 1 week and also my hair started falling out right away.

A week after that I got glutenized and I have been sick since then even though I have gone back to being gluten-free. It seems that all the muscles in my legs hurt constantly and I am getting leg cramps and foot cramps.

I got blood work done last week and my potassium, calcium is o.k. but I am anemic...BUT MY BLOOD WORK APPEARS I AM "HYPER" thyroid now??????

I am very confused on how I could fluctuate from last year??

Does anyone else fluctuate?

My symptoms are hair falling out, wieght gain 10#s in 2 1/2 weeks, anemia, tiredness, leg muscle pain and cramps, and foggy thinking. These all seem to be hypo to me.

I just got blood work today to check my T4 and T3 levels...next week I am scheduled for a thyroid scan.

Any thoughts??? I really need some help.

Jennifer

[jerseyangel]

Hi Jennifer--Interesting you should ask about this. I tested borderline low on a TSH right before I was diagnosed with Celiac last year. I had follow up bloodwork in Nov. at about 6 months gluten-free, and everything was normal. Recently, I've been having problems with muscle cramping, weight gain, dry eyes, heart palpations (being aware of the beating), dry skin and hair. I had blood drawn for testing this past Monday--she's testing for TSH, T3 and T4, as well as a metabolic panel and CBC. I expect the results soon.. At my doctor visit, she told me that sometimes people have fluctuating levels--sometimes high, and then low. I had not heard of that before. So, I guess it can happen.

[ms-sillyak-screwed]

My thyroid was tested and it was borderline "HYPO" a couple of weeks later it was retested and it was "NORMALl" so they did not want to treat it.

BUT MY BLOOD WORK APPEARS I AM "HYPER" thyroid now??????

...next week I am scheduled for a thyroid scan.

Any thoughts??? I really need some help.

Jennifer

In my case I grew a HOT NODUEL on my hyper-thyroid after being gluten-free & DF.

I had the scan they confirmed I had a noduel, then swallowed a radioactive pill -- RAI treatment. Oh - I've never been the same. -- If I had it to do it all over again? I don't know I had any [other] choice?! oR is there one?

In retrospect I believe SOY caused me to grow that thing, as time passed it caused me to develop the secondary food allergies to legumes and night shade veggies. I was gluten-free & DF about 5 years and thought this was easy. Then I discovered soy was a huge issue. Now, I find it interesting my thyroid medication (I'll end up taking for the rest of my life) the package inserts say do NOT comsume soy when taking this RX. I know why. Remember soy is one of the deadly 8 allergens.

How strick is your diet? Do you keep a food journal?

Have you developed secondary food intolerances yet?

[Rice Cakes]

My thyroid blood tests gave normal results. So that's a thousand "yes"es and one "no".

[jennifervan]

Jerseyangel...wow..that sounds familiar. Please keep me posted on what your results turn out to be. I will beinterested to see. You have some of the same symptoms. I thought they were Celiac related but the other Celiac symptoms went away or slowly got better with the diet...these do not. Right now I am fighting a cramp in my calf and one in my foot. I hope they figure this out soon.

mssillyakscrewed- I saw your earlier posts on this thread about soy. No, I do not have soy that I know of. I do not like it. Dairy does not seem to effect me. I noticed that I do not feel good after eating tinkyada rice pasta noodles...is this possible? I need to keep better track of what I am eating. I am pretty conservative because I am new to all of this and almost hyper-aware of what I am eating.

I have never had a bad stomach in relationship to getting glutened.I realized I had Celiac from my doctor doing some other tests...slow stomach. I did have a bad stomach reaction to gluten 2 weeks ago...for the first time...one I WILL NEVER FORGET...it was like I was slowly digesting glass for almost 2 days.

I am sorry that you have a hyper-nodule and the treatment you had. Would it have been better if you did not do RAI? What are the bad effects of the RAI that you experience that you regret it?

I have noticed that I got sick after eating sourcream and mayo dip. Could this be lactose? My Latte's do not seem to bother me...actually they help with constipation.

Jennifer