Jump to content
  • 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

Hypothyroidism - Reaction To Levothyroxin Pills


Pac

Recommended Posts

Pac Apprentice

I started taking levothyroxin and after three days I'm totally freaking out - the internal shaking got very bad and my hands visibly tremble, I'm again losing balance when I look up, I got very irritable and severely depressed. Fatigue, muscle weakness and neuropathy returned too. Could all this be a reaction to levothyroxin itself or should I look for other culprits? Especially the depression feels exactly like glutening. I have a mild allergy reaction to the pill - upset, swollen stomach and itching but I thought I'd give it a try anyway (stupid me).

I'm getting quite frustrated with again. I went to my dr because I felt sick for months and nothing seemed to help - blood test showed elevated TSH. Dr assures me I can't feel any symptoms yet as my T4 and T3 level are still within normal = problem solved, I don't have symptoms. I go to a specialist, I'm told I'm still too young to feel symptoms of hypothyroidism so the symptoms are probably something else like stress. She prescribes me levothyroxin anyway and tells me to come back in three months time for blood tests (antibodies and thyroid hormones) to see if it helped. Now the pills just make me sicker. It drives me nuts. I've got enough of being told I'm not sick and getting meds that don't work. Sorry for the ranting.


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



Celiac.com Sponsor (A8-M):



Emilushka Contributor

Did you check to see if the levothyroxine has gluten in it?

nora-n Rookie

I have been on the thyroid forums for years, and it is very common to have over-dosing symptoms in the first three-four days.

This is because your own thyroid still makes some t4 and t3 (as your thyroid hormone numbers are still within range) and now you take some of the same hormones on top of that.

What will happen is that the pituitary is sensing the added thyroid hormones, and the TSH goes down, and the output from the thyroid gland decreases, and your over-dosing symtoms go away.

the doctor should have scheduled a blood test after 6 weeks, this is one way to titrate the dose, or you should have started with half the dose and increased after two -three weeks, when customarily one needs an increase.

Now you could end up either over- dosed or under-dosed for three months.

What dose were you put on??

Another thing is, that people need their free t4 and free t3 at a specific level, and it is absolutely stuptid to say that because your levels are still within range, you cannot have symptoms. Lots and lots of paitents have severe hypo symptoms and the levels are still within range. But most need their ft4 and ft3 at least halv-way up in the range, and when taking thyroid meds they usually need to be about three quarter up (because exogenous hormones work less well) or even higher.

Some pateitns ahve even reportedly been very hypo with ft4 high, just that they needed it higher.

nora

Skylark Collaborator

"Too young to be hypo" is stupid too. I've been on thyroid medicine since I was 20. As Nora says, overdosing symptoms are really common at first. Call your doctor and ask if it's OK to break the pills in half for a little while before you go on the full dose.

Ahorsesoul Enthusiast

I have a bad reation to the stuff too. I take Armour Thyroid.

laura4669 Apprentice

I have a bad reation to the stuff too. I take Armour Thyroid.

Ditto. I take a compounded thyroid med equivalent to one grain of Armour.

cassP Contributor

hi Pac- ya, i am having AWFUL reactions to my pill as well. i am on a brand name Synthroid (T4 pill like u). it brought my TSH from 11.39 to 4 but did nothing to alleviate my Hypo symptoms AND gave more panic attacks and more hair falling out and a new symptom: an ACHE in my thyroid itself.

im beginning to HATE T4 MORE than i hate Gluten. no lie.

1st of all- what dose did they put u on? they started me on 50mcg, but i think they should have started with the 25... just because i ALREADY had ANXIETY, so maybe it should have been a slower adjustment.

2nd- make sure there's no gluten in your pill AND perhaps you're itching & swelling from the Lactose in it? or maybe a cornstarch filler?

3rd-> from everything ive been researching- pretty much ALL men with Hypo, and only very few women with Hypo feel great on the T4 oNLY. i am NOT one of those people. my Doc just started adding Cytomel (synthetic T3) to my morning dose at 5mcg. i already feel 50% better thruout the day untill 5 or 6pm-> when i start panicking again.

good luck- keep notes on your symptoms- what has gotten better and what may be getting worse- and keep up with your doctor.


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



Celiac.com Sponsor (A8-M):



Roda Rising Star

Just FYI I have read on here theat some people have problems with the brand name Synthroid. I can't give you exact posts, but it is here somewhere. I take a generic from mylan and I have never had a problem with it.

Pac Apprentice

Thanks for the replies.

I was expecting anxiety, trembling hands, but the suicidal depression and irritability was quite unexpected. All the previous times it was gluten triggering those two. I'm taking 50mcg levothyroxine and it should be certified gluten-free. I emailed the company again to make sure it is naturally gluten-free (I'm in Europe).

With the symptoms it's rather tricky. I stopped eating high-iodine food after the blood tests - I switched my main protein source to marine fishes before the hypothyroid symptoms started. Within the three weeks before seeing the endocrinology specialist most of hypo(?) symptoms got way better (weight issues, swollen ankles, fatigue), only my thyroid hurted at first (not any more) and the internal shaking got a bit worse. I told that to the dr but she didn't seem too interested. :(

Charlie's Girl Apprentice

I have been on the thyroid forums for years, and it is very common to have over-dosing symptoms in the first three-four days.

Can you recommend a "good" thyroid forum. I too am experiencing thyroid dosing problems and would love to know which forum/s you like.

Charlie's Girl Apprentice

I started taking levothyroxin and after three days I'm totally freaking out - the internal shaking got very bad and my hands visibly tremble, I'm again losing balance when I look up, I got very irritable and severely depressed. Fatigue, muscle weakness and neuropathy returned too. Could all this be a reaction to levothyroxin itself or should I look for other culprits? Especially the depression feels exactly like glutening. I have a mild allergy reaction to the pill - upset, swollen stomach and itching but I thought I'd give it a try anyway (stupid me).

I'm getting quite frustrated with again. I went to my dr because I felt sick for months and nothing seemed to help - blood test showed elevated TSH. Dr assures me I can't feel any symptoms yet as my T4 and T3 level are still within normal = problem solved, I don't have symptoms. I go to a specialist, I'm told I'm still too young to feel symptoms of hypothyroidism so the symptoms are probably something else like stress. She prescribes me levothyroxin anyway and tells me to come back in three months time for blood tests (antibodies and thyroid hormones) to see if it helped. Now the pills just make me sicker. It drives me nuts. I've got enough of being told I'm not sick and getting meds that don't work. Sorry for the ranting.

Hope you are finding some relief and the answers you need. I have been having problems getting my dose at the correct level. I have read many people's posts on how great they feel when they find the correct dosage. Stay strong. We're all pulling for you.

nora-n Rookie

About good thyroid forums, i recommend the one by Mary Shomon, at Open Original Shared Link . There is a tiny red link my forums there. It used to be in delphiforums but about.com changed formats for all its forums, but ther still are links from the delphi celaic forum to the about.com thyroid forum in related forums for example.

The people are mostly from the U.S, but the expertise there is the best.

Someone mentioned Eurpe, if you speak german, the ht-mb forum is very good.

Pac Apprentice

Thanks everyone for your support.

I called my dr and she thinks I shouldn't be reacting to the levothyroxine itself yet cause it's very low dosage (I'm lightweight though). I got Euthyrox instead of Letrox, same dosage but only 5 times a week. Took one after two days break and everything seems ok so far, no allergy reaction either.

The manufacturer (letrox) replied and althought all ingredients are naturally gluten-free, one suplier can't rule out cross-contamination. I don't really know if I could be reacting to such a small cc. But compared to my reaction to about 10ml of tripple-distilled whisky, it seems improbable but not impossible.

cassP Contributor

Thanks everyone for your support.

I called my dr and she thinks I shouldn't be reacting to the levothyroxine itself yet cause it's very low dosage (I'm lightweight though). I got Euthyrox instead of Letrox, same dosage but only 5 times a week. Took one after two days break and everything seems ok so far, no allergy reaction either.

The manufacturer (letrox) replied and althought all ingredients are naturally gluten-free, one suplier can't rule out cross-contamination. I don't really know if I could be reacting to such a small cc. But compared to my reaction to about 10ml of tripple-distilled whisky, it seems improbable but not impossible.

what was the dosage?

and- i had never heard of taking 2 days off, 5 days on... your doc suggested that??

i DID also have some palpitations in the 1st week- but those went away... however the anxiety stayed and the hair loss worsened.

good luck :)

Charlie's Girl Apprentice

About good thyroid forums, i recommend the one by Mary Shomon, at Open Original Shared Link . There is a tiny red link my forums there. It used to be in delphiforums but about.com changed formats for all its forums, but ther still are links from the delphi celaic forum to the about.com thyroid forum in related forums for example.

The people are mostly from the U.S, but the expertise there is the best.

Someone mentioned Eurpe, if you speak german, the ht-mb forum is very good.

Thank you so much! I'll check it out. I think getting my thyroid balanced out will be key to finding my optimal health- it's been lost for so long- I was wondering if I would ever find it again. ;)

Pac Apprentice

what was the dosage?

and- i had never heard of taking 2 days off, 5 days on... your doc suggested that??

i DID also have some palpitations in the 1st week- but those went away... however the anxiety stayed and the hair loss worsened.

good luck :)

The dosage is 50mcg. The 2 days off sound weird, but so far it's the only time I feel at least a little better. And yes, it was the doc suggesting that.

Otherwise I'm getting worse every day - terrible migraines, nausea, hot flashes, starting to lose hair again, tired and sleepy all the time (sleeping again 12hrs/day). No typical glutened symptoms like depression or muscle weakness after I switched the brand but I hate the meds anyway.

thanx for the support.

burdee Enthusiast

I started taking levothyroxin and after three days I'm totally freaking out - the internal shaking got very bad and my hands visibly tremble, I'm again losing balance when I look up, I got very irritable and severely depressed. Fatigue, muscle weakness and neuropathy returned too. Could all this be a reaction to levothyroxin itself or should I look for other culprits? Especially the depression feels exactly like glutening. I have a mild allergy reaction to the pill - upset, swollen stomach and itching but I thought I'd give it a try anyway (stupid me).

I'm getting quite frustrated with again. I went to my dr because I felt sick for months and nothing seemed to help - blood test showed elevated TSH. Dr assures me I can't feel any symptoms yet as my T4 and T3 level are still within normal = problem solved, I don't have symptoms. I go to a specialist, I'm told I'm still too young to feel symptoms of hypothyroidism so the symptoms are probably something else like stress. She prescribes me levothyroxin anyway and tells me to come back in three months time for blood tests (antibodies and thyroid hormones) to see if it helped. Now the pills just make me sicker. It drives me nuts. I've got enough of being told I'm not sick and getting meds that don't work. Sorry for the ranting.

What symptoms did you describe to your doc before he prescribed levothyroxine? Did he also give you a TPOab test for Hashimoto's autoimmune thyroiditis antibodies? People with celiac often get autoimmune Hashimoto's.

If your T3 and T4 levels are normal and your TSH is only slightly elevated, you may need a lower dose of levothyroxine (which is a T4 supplement). Your reaction symptoms of internal (and external hand) trembling, irritability, etc. sound like a HYPERthyroidism reaction or too much thyroid hormone from your levothyroxine, rather than a hypo reaction. Maybe that's why your doc lets you do 2 days off the levo. However, a better treatment might be to lower your dose to 25mcg, rather than 50. Levo has a long halflife (8 days before half the hormone has left your system). So skipping 2 days will give you slight relief, but taking a daily lower dose would be more effective in the long run IF you really need a T4 supplement.

SUE

Pac Apprentice

What symptoms did you describe to your doc before he prescribed levothyroxine? Did he also give you a TPOab test for Hashimoto's autoimmune thyroiditis antibodies? People with celiac often get autoimmune Hashimoto's.

If your T3 and T4 levels are normal and your TSH is only slightly elevated, you may need a lower dose of levothyroxine (which is a T4 supplement). Your reaction symptoms of internal (and external hand) trembling, irritability, etc. sound like a HYPERthyroidism reaction or too much thyroid hormone from your levothyroxine, rather than a hypo reaction. Maybe that's why your doc lets you do 2 days off the levo. However, a better treatment might be to lower your dose to 25mcg, rather than 50. Levo has a long halflife (8 days before half the hormone has left your system). So skipping 2 days will give you slight relief, but taking a daily lower dose would be more effective in the long run IF you really need a T4 supplement.

SUE

I went to my regular doc first - main complains were fatigue (sleeping over 10-12hrs a day and needing several naps during the day), hair loss, swollen fingers and feet, neuropathy. I had a history of elevated TSH (resolved on gluten-free diet) so she just tested for that and then sent me to the specialist.

The specialist just gave me the pills and plans to test for Hashimoto later, whem I'm on the levothyroxine already. She's the only endocrinology doc in town so I have no choice but to try to cooperate.

okieinalaska Apprentice

I go to a specialist, I'm told I'm still too young to feel symptoms of hypothyroidism so the symptoms are probably something else like stress.

Too young to feel symptoms? Just curious how old are you? That is something I hadn't read before is that true of most people?

I had my doc test my thyroid on Tuesday but don't have any results yet. I am not sure really what tests he is running except that they are thyroid and vitamin levels. I had specifically mentioned hashimotos though...

wheeleezdryver Community Regular

I was diagnosed w/ hypothyroidism in spring of 2004. When I was told i had this condition, i remember going to do research, and seeing a lot of info saying that some dr's wouldn't test anyone ounger than 30 because 'they were too young to have thyroid problems. *I* was almost 27 at the time, and had been having symptoms for a year before i went to the dr about it...

Archived

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

  • Get Celiac.com Updates:
    Support Celiac.com:
    Donate

  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):





    Celiac.com Sponsors (A17-M):




  • Recent Activity

    1. - trents replied to catsrlife's topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results

    2. - trents replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    3. - Gigi2025 replied to Leeloff's topic in Gluten-Free Foods, Products, Shopping & Medications
      75

      How Come Gluten Didnt Bother Me In Italy

    4. - Rejoicephd replied to JulieRe's topic in Related Issues & Disorders
      7

      Oral thrush question

    5. - catsrlife posted a topic in Celiac Disease Pre-Diagnosis, Testing & Symptoms
      1

      Patiently Waiting to See Results


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,897
    • Most Online (within 30 mins)
      7,748

    Sgp
    Newest Member
    Sgp
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      121.4k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):




  • Who's Online (See full list)


  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • trents
      Welcome to the forum, @catsrlife! Celiac disease can be diagnosed without committing to a full-blown "gluten challenge" if you get a skin biopsy done during an active outbreak of dermatitis herpetiformis, assuming that is what is causing the rash. There is no other known cause for dermatitis herpetiformis so it is definitive for celiac disease. You would need to find a dermatologist who is familiar with doing the biopsy correctly, however. The samples need to be taken next to the pustules, not on them . . . a mistake many dermatologists make when biopsying for dermatitis herpetiformis. 
    • trents
      You state in an earlier post that you don't have celiac disease. Here in this post you state you will "be doing another test". What will this test be looking for? What kind of celiac disease testing have you had done? If you have used a Entero Labs it sounds like you have had stool testing done for celiac disease which is not widely accepted as a valid celiac disease diagnostic testing method. Have you had blood antibody testing for celiac disease done and do you realize that for antibody testing to be valid you must have been eating generous amounts of gluten for a period of weeks/months? 
    • Gigi2025
      No, I've not been diagnosed as celiac.  Despite Entero Labs being relocated to Switzerland/Greece, I'll be doing another test. After eating wheat products in Greece for 4 weeks, there wasn't any reaction.  However, avoiding it here in the states.   Thanks everyone for your responses.  
    • Rejoicephd
      Thank you @JulieRe so much for sharing this extra information. I'm so glad to hear you're feeling better and I hope it keeps moving in that direction. I feel I'm having so many lightbulb moments on this forum just interacting with others who have this condition. I also was diagnosed with gastric reflux maybe about 10 years ago. I was prescribed ranitidine for it several years back, which was working to reduce my gastric reflux symptoms but then the FDA took ranitidine off the shelves so I stopped taking it. I had a lot of ups and downs healthwise in and around that time (I suddenly gained 20 pounds, blood pressure went up, depression got worse, and I was diagnosed with OSA). At the time I attributed my change in symptoms to me taking on a new stressful job and didn't think much else about it. They did give me a replacement gastric reflux drug since ranitidine was off the shelves, but when I went on the CPAP for my OSA, the CPAP seemed to correct the gastric reflux problem so I haven't been on any gastric reflux drug treatment for years although I still do have to use a CPAP for my OSA. Anyway that's a long story but just to say… I always feel like I've had a sensitive stomach and had migraines my whole life (which I'm now attributing to having celiac and not knowing it) but I feel my health took a turn for much worse around 2019-2020 (and this decline started before I caught covid for the first time). So I am now wondering based on what you said, if that ranitidine i took could have contributed to the yeast overgrowth, and that the problem has just been worsening ever since. I have distinctly felt that I am dealing with something more than just stress and battling a more fundamental disease process here. I've basically been in and out of different doctor specialties for the past 5 years trying to figure out what's wrong with me. Finally being diagnosed with celiac one year ago, I thought I finally had THE answer but now as I'm still sick, I think it's one of a few answers and that maybe yeast overgrowth is another answer. For me as well, my vitamin deficiencies have persisted even after I went gluten-free (and my TTG antibody levels came down to measurably below the detectable limit on my last blood test). So this issue of not absorbing vitamins well is also something our cases have in common. I'm now working with a nutritionist and taking lots of vitamins and supplements to try and remedy that issue. I hope that you continue to see improvements in working with your naturopath on this. Keep us posted!
    • catsrlife
      Back at the end of July I got this rash on both of my forearms. It started on my right and continued to the left. It was on the top and side. The rash has bumps that would pop with clear liquid if scratched. They would almost crystalize and scab up. They reminded me of chicken pox. They would scab for weeks and not heal much at all except for the blood clotting. If the scab was scratched off, it would bleed and bleed until it scabbed up again. The skin has lost its pigment where the scabs are. I figured it was probably either the plant I had trimmed around the 15th or some reaction to the magnesium complex I was taking or an allergic reaction to the asthma meds I was on. I stopped the asthma meds and the magnesium. The rash seemed to get better but when I took the asthma meds it flared up again so I went to the urgent care as my doctor was unavailable. The UC doctor said it probably wasn't the meds and asked about my diet. I said I was strict keto. I usually am, but there is a story around this. I feel amazing on keto. When I eat sugar, wheat, and starchy veggies I feel horrible. Blood sugar goes up, IBS type symptoms, brain fog, etc. But I have a horrible addiction to carbs so I blow it sometimes and after Mom died in 2023, I fell off the wagon. No rashes, just weight gain. I finally went back on keto and then around that time had a piece of pizza (or so, it's hard to stop the carb rush.) So I was strict keto, off and on. She ignored that and prescribed some allergy meds. It didn't go away.  What was happening by then was that the rash was now on my upper elbows, both of them, on the back of my arms. It starts with a very itchy bump, spreads around it and sometimes just burns like crazy and other times just itches. Then it started on the sides of my knees on the oustide, a little bit down the sides of the calves. It's not as bad there as it is on my arms even though it comes and goes (and so does wheat in my diet.) I then got three tiny blisters on each hand, 3 on the insdie of my index finger on the right hand and 3 on the inside of middle finger of my left hand. There is still a little scab there even though it was two weeks ago. No more have appeared on the fingers. But right now the back of the arms above my elbows are starting to itch. At some point I started to think mites from the possum that was sneaking into our house but it's been 3 months and they would be dead already. It wouldn't be from humans because I don't go near any humans although I did take an Uber to the doctor and the bus back. Plus, it's symmetrical. It starts on one side and is almost identical on the other.  I did my DNA with Ancestry and MyHeritage. I don't have the HLA-DQ2 or HLA-DQ8. I do have HLA-DQ2.2. I took the blood test but it was negative. Then again, I don't eat wheat every day. I rarely eat it except for lately when I've been preparing for the blood test if I have to take it again. I don't like to. It makes my joints hurt, gives me brain fog, stomach problems, I sleep in the middle of the day, etc. I have a doctor appointment tomorrow. I hope that she will be more serious about this than the UC doctor was.  So I have no idea. With my luck they'll magically disappear before the doctor appointment. That's what happens with everything.
×
×
  • Create New...

Important Information

NOTICE: This site places This site places cookies on your device (Cookie settings). on your device. Continued use is acceptance of our Terms of Use, and Privacy Policy.