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Thyroid & Misery Of Switching Meds


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8 replies to this topic

#1 idonteatwheat

 
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Posted 30 May 2011 - 03:09 PM

I've been on Armour since last September and was doing wonderfully on it (my other hormone levels had increased too just like my primary said). I stupidly decided because I was having all these hormone issues to go see an endocrinologist, which I did toward the end of last year.

The endo did more testing and decided in April that I needed to be on synthetic thyroid medicine, she didn't trust the dosage of the Armour. We went away on vacation and I put off taking the new meds (Synthroid and generic liothyronine)until we got home (thank God I did).

To say I got glutened is an understatement, by the third day I couldn't get out of bed, every bit of me hurt (but no fever, a sign). I took the first pill on a Friday and ended up with the usual complement of GI complaints by mid day. It went downhill from there, I totally was congested and my throat was swollen. Honestly I thought it was a cold at first until the neurological symptoms started and I got the mouth ulcers, that was the clincher that it was gluten. I didn't really put it all together until Sunday, I got up and took the Synthroid and liothronine and crawled back in bed and in minutes I was all wheezy and my throat got tight. That's was my ah-ha moment and when I googled the Synthroid. Now if I had told the endo once I said it two dozen times about celiac so I naively assumed she wouldn't give me something with gluten (I mean autoimmune diseases typically are not isolated things so she has to have other celiac patients I thought).

So I took Alpha Lipoic acid at that point (it is an antioxidant and I was having issues with blood sugars and the neurological symptoms so I was desperate to try and get the poison out of me). Typically I avoided ALA in the mornings when I took my Armour because it can cancel out the effects of it. I also took some glutathione and vitamin D (probably just to feel like I was doing something to help myself more than anything). I started to feel better on Monday and needless to say went back on the Armour.

Either Tuesday or Wednesday I called the endo and left a message with her nurse describing what happened. The nurse got back later in the week and basically told me she wasn't changing my medicine and they switched me to another endo in the practice who prescribes Armour. I got a letter a day later with an appointment to the new doctor. I'm beyond aggravated, 10 days later the ulcers are finally healing and I still cannot eat without having GI issues. I feel like I ate shards of glass, after eating I can tell when things are going through my GI tract. I just had an iron infusion this week for the anemia, now I am afraid I've triggered more damage and GI bleeding which will just compound things.

I just had to get this all off my chest, I swear it is beyond aggravating to deal with doctors. I think I am going to cancel the appointment with the other endo and just let my primary care doctor manage things.
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#2 ravenwoodglass

 
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Posted 30 May 2011 - 03:29 PM

So sorry this happened to you. Doctors really don't know what meds are gluten free and what aren't. Sometimes even pharmacists don't check. I think your plan to just have your gluten-free handle it and go back to the old med is a good one. I don't understand why since it was working so well for you the endo switched it in the first place. I hope you are feeling better soon. I have found name brand Pepto Bismal to help with the stomach pain, don't know if it will help you but if you can take it safely you might want to give it a try.
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Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying
"I will try again tommorrow" (Mary Anne Radmacher)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002
Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis
All bold resoved or went into remission with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity Gene Test Aug 2007
HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

#3 Jenniferxgfx

 
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Posted 30 May 2011 - 05:08 PM

Wow that's really shady thatthis endo tried to kill you (not on purpose I'm sure!) and then passes you off to a colleague when you say something about it. :(

What a rotten experience!
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glutenfree since 6/2011. sick for 30 years.

borderline blood test, negative biopsy.

SEVERELY sensitive celiac with DH. sensitive to contact and ingestion.

asthma (was severe; improved exponentially after 6/11)

spina bifida & childhood SCI at L4/L5 (possibly complicated by weak bones)

countless fractures and infections.

i once listed over 100 symptoms or conditions that improved or were eliminated after 6/11.

very vegan. and, of course, i've also discovered some other food allergies.


#4 burdee

 
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Posted 30 May 2011 - 05:10 PM

I've been on Armour since last September and was doing wonderfully on it (my other hormone levels had increased too just like my primary said). I stupidly decided because I was having all these hormone issues to go see an endocrinologist, which I did toward the end of last year.

To say I got glutened is an understatement, by the third day I couldn't get out of bed, every bit of me hurt (but no fever, a sign). I took the first pill on a Friday and ended up with the usual complement of GI complaints by mid day. It went downhill from there, I totally was congested and my throat was swollen. Honestly I thought it was a cold at first until the neurological symptoms started and I got the mouth ulcers, that was the clincher that it was gluten. I didn't really put it all together until Sunday, I got up and took the Synthroid and liothronine and crawled back in bed and in minutes I was all wheezy and my throat got tight. That's was my ah-ha moment and when I googled the Synthroid.


The inactive ingredients of Synthroid include acacia, confectioner's sugar (contains corn) and lactose monohydrate. Many celiacs react badly to lactose, either because they don't produce the lactase enzyme neceessary to digest lactose OR they really have a dairy allergy as well as gluten intolerance. If you react to corn, the sugar ingredient may bother you. You could even react to acacia (people can develop delayed reaction allergies to anything). So I'm not surprised you suffered symptoms after taking Synthroid. However generic liothyronine's inactive ingredients are "calcium sulfate, microcrystalline cellulose, hypromellose, talc, and colloidal silicon dioxide", which shouldn't bother you. If your doc insists on synthetic thyroid supplements, try Levoxyl with generic liothyronine. I've taken that combination for 6 months without problems.
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#5 Tigercat17

 
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Posted 07 June 2011 - 07:13 AM

I've been on Armour since last September and was doing wonderfully on it (my other hormone levels had increased too just like my primary said). I stupidly decided because I was having all these hormone issues to go see an endocrinologist, which I did toward the end of last year.

The endo did more testing and decided in April that I needed to be on synthetic thyroid medicine, she didn't trust the dosage of the Armour. We went away on vacation and I put off taking the new meds (Synthroid and generic liothyronine)until we got home (thank God I did).

To say I got glutened is an understatement, by the third day I couldn't get out of bed, every bit of me hurt (but no fever, a sign). I took the first pill on a Friday and ended up with the usual complement of GI complaints by mid day. It went downhill from there, I totally was congested and my throat was swollen. Honestly I thought it was a cold at first until the neurological symptoms started and I got the mouth ulcers, that was the clincher that it was gluten. I didn't really put it all together until Sunday, I got up and took the Synthroid and liothronine and crawled back in bed and in minutes I was all wheezy and my throat got tight. That's was my ah-ha moment and when I googled the Synthroid. Now if I had told the endo once I said it two dozen times about celiac so I naively assumed she wouldn't give me something with gluten (I mean autoimmune diseases typically are not isolated things so she has to have other celiac patients I thought).

So I took Alpha Lipoic acid at that point (it is an antioxidant and I was having issues with blood sugars and the neurological symptoms so I was desperate to try and get the poison out of me). Typically I avoided ALA in the mornings when I took my Armour because it can cancel out the effects of it. I also took some glutathione and vitamin D (probably just to feel like I was doing something to help myself more than anything). I started to feel better on Monday and needless to say went back on the Armour.

Either Tuesday or Wednesday I called the endo and left a message with her nurse describing what happened. The nurse got back later in the week and basically told me she wasn't changing my medicine and they switched me to another endo in the practice who prescribes Armour. I got a letter a day later with an appointment to the new doctor. I'm beyond aggravated, 10 days later the ulcers are finally healing and I still cannot eat without having GI issues. I feel like I ate shards of glass, after eating I can tell when things are going through my GI tract. I just had an iron infusion this week for the anemia, now I am afraid I've triggered more damage and GI bleeding which will just compound things.

I just had to get this all off my chest, I swear it is beyond aggravating to deal with doctors. I think I am going to cancel the appointment with the other endo and just let my primary care doctor manage things.



I'm so sorry you had to go through this. Some doctors are such idiots... :angry: I too got so sick from a new prescription of Synthroid and I'm not lactose intolerant. I know it was a gluten reaction. I was taking it for two years and then I was diagnosed with celiac disease and then I continued to take it for three more months after I was gluten free and I wasn't feeling much better. Then I got a new prescription and that same day I got so much sicker -I was practically bed ridden. After two weeks of this I was looking at all the foods I ate -eating only fresh foods when it finally occurred to me it was the Synthriod. I was getting to worse and always having a full stomach feeling after two bites of food. I was losing weight again. I even called Abbott myself and they continued to say they couldn't guarantee it was gluten free. So, I started to see the pattern with my food journal. I believe it was cross contamination from the manufacturer from the Synthriod. I can't eat anything that's made on shared lines with gluten. Luckily I figured it out and my endo switched me to Levoxly with out any problems. They even called the company themselves just to confirm that Synthyiod can't guarantee a gluten free status. Once I switched to Levoxly it took me a month to get better, but I did get better and I started gaining weight again. Hopefully your new endo doctor is a lot more helpful for you. They really should have listened to you when you told them you were having these reactions.

It's always best to call the any medicine company yourself. A lot of doctors and pharmacists don't understand that even medications can have gluten in them. And even a small amount can set you back. Hang in there!

I hope you are feeling better soon! :)
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Lisa

Infertility since 1995/Endometriosis
Hasimoto Thyroid disease 1998
Enlarged Abdominal Lymph nodes since 2003 - Stable
Thyroid Hurtle Cell Cancer 2008 Stage 1- Total Thyriodectomy 2008
Anxiety/Depression/Insomnia/Fatigue - Gone with gluten free diet
Acid reflux -LPR 7-2009 - Gone with a Strict gluten free diet
Celiac disease - positive upper endoscopy & Blood Test 9-2009
Undiagnosed celiac for 20 years - Gluten free since 9-13-09

#6 Skylark

 
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Posted 07 June 2011 - 08:00 AM

The inactive ingredients of Synthroid include acacia, confectioner's sugar (contains corn) and lactose monohydrate.

Abbott does not guarantee that Synthroid is gluten-free. They don't test any of the ingredients for gluten.
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#7 burdee

 
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Posted 07 June 2011 - 08:08 AM

Abbott does not guarantee that Synthroid is gluten-free. They don't test any of the ingredients for gluten.


Whether or not synthroid could be gluten free, the lactose ingredient will cause problems (symptoms) for most celiacs.
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Gluten, dairy, soy, egg, cane sugar, vanilla and nutmeg free. Enterolab diagnosed gluten/casein intolerant 7/04; soy intolerant 8/07. ELISA test diagnosed egg/cane sugar IgG allergies 8/06; vanilla/nutmeg 8/06. 2006-10 diagnosed by DNA Microbial stool tests and successfully treated: Klebsiella, Enterobacter Cloaecae, Cryptosporidia, Candida, C-diff, Achromobacter, H. Pylori and Dientamoeba Fragilis. 6/10 Heidelberg capsule test diagnosed hypochloridia. Vitamin D deficiency, hypothyroiditis, hypochloridia and low white blood cells caused vulnerability to infections. I now take Betaine HCl, probiotics, Vitamin D and T3 thyroid supplement to maintain immunity.


#8 beachbirdie

 
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Posted 09 July 2011 - 07:59 AM

I've been on Armour since last September and was doing wonderfully on it (my other hormone levels had increased too just like my primary said). I stupidly decided because I was having all these hormone issues to go see an endocrinologist, which I did toward the end of last year.

The endo did more testing and decided in April that I needed to be on synthetic thyroid medicine, she didn't trust the dosage of the Armour. We went away on vacation and I put off taking the new meds (Synthroid and generic liothyronine)until we got home (thank God I did).


I just had to get this all off my chest, I swear it is beyond aggravating to deal with doctors. I think I am going to cancel the appointment with the other endo and just let my primary care doctor manage things.


I am sorry this happened to you. It is very disconcerting.

I will NEVER trust my thyroid care to an endocrinologist. The worst care I ever had was from an endo, and many of my friends in a thyroid community agree. It is soooo easy to get the thyroid messed up! Even docs who use Armour aren't always "on the ball".

I am so happy with my doc, she worked with how I felt rather than rely completely on numbers. She helped me find the place "in range" that worked for me. (Well, except for TSH). Armour effectively suppresses the TSH, and endos get very disturbed when they see a patient on Armour; too many docs see the suppressed TSH and decide you are overmedicated, when you are definitely NOT. Most try to use the TSH-only approach to adjusting meds, big mistake.

I sure hope you get settled back in your "sweet spot" on the right med. If your primary doc had you in a good place, sounds like a good plan to continue with that one!

Best to you.
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#9 Gemini

 
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Posted 11 July 2011 - 10:30 AM

I am sorry this happened to you. It is very disconcerting.

I will NEVER trust my thyroid care to an endocrinologist. The worst care I ever had was from an endo, and many of my friends in a thyroid community agree. It is soooo easy to get the thyroid messed up! Even docs who use Armour aren't always "on the ball".

I am so happy with my doc, she worked with how I felt rather than rely completely on numbers. She helped me find the place "in range" that worked for me. (Well, except for TSH). Armour effectively suppresses the TSH, and endos get very disturbed when they see a patient on Armour; too many docs see the suppressed TSH and decide you are over-medicated, when you are definitely NOT. Most try to use the TSH-only approach to adjusting meds, big mistake.

I sure hope you get settled back in your "sweet spot" on the right med. If your primary doc had you in a good place, sounds like a good plan to continue with that one!

Best to you.


I could not agree with your post more, beachbirdie! While I know this is not true for everyone out there, I have had the worst luck with specialists and always refer back to my functional medicine doctor for thyroid care. Endo's just seem to be a bunch of dopes, they do not like to prescribe natural thyroid supplements and always claim we are over medicated when they see that suppressed TSH. I don't even bother with the TSH number because when I let it become unsuppressed, I end up going anemic. Thyroid hormone plays a part in red blood cell formation and it's another reason for anemia that most docs do not look for.

If you don't treat mainly by symptoms, then you will have trouble with stabilizing the thyroid and not feel well most of the time. Autoimmune thyroid disease is like celiac.....just because the panel says normal (by their standards), it doesn't mean your thyroid is functioning well. It can take a long time before it shows up in the blood work. What don't they get? :blink:
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