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. - cristiana replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      14

      Ibuprofen

    2. - Jmartes71 posted a topic in Coping with Celiac Disease
      0

      My only proof

    3. - Scott Adams replied to wellthatsfun's topic in Coping with Celiac Disease
      1

      still struggling with cravings

    4. - Scott Adams replied to Colleen H's topic in Gluten-Free Foods, Products, Shopping & Medications
      1

      Oh my goodness medication causing pain !!!!

    5. - Scott Adams replied to Me,Sue's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      1

      Knowing what to do when feeling unwell.


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,871
    • Most Online (within 30 mins)
      7,748

    GR82BNTX
    Newest Member
    GR82BNTX
    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

    • cristiana
      Hi Colleen Are you supplementing B12/having injections? I have learned recently that sometimes when you start addressing a B12 deficiency, it can temporarily make your symptoms worse.  But it is important not to stop the treatment.  Regarding your problems with anxiety, again that is another symptom of a B12 deficiency.   I didn't know what anxiety was until it hit me like a train several months before gastrointestinal issues began, so I can certainly relate.   Two books which helped me hugely were At Last A Life by Paul David (there is a website you can look up) and The Depression Cure: The Six-Step Programme to Beat Depression Without Drugs by Dr Steve Llardi.  Although his book is aimed at people who have depression, following the principals he sets out was so helpful in lessening my anxiety.  Llardi suggests we need to focus on getting enough: - physical exercise - omega-3 fatty acids - natural sunlight exposure - restorative sleep - social connectedness - meaningful, engaging activity   ... and we should feel a lot better. That is not to stay you must stop taking medication for depression or anxiety if you have been prescribed it, but adopting the changes Dr Llardi sets out in the book should really help. Can I just ask two more questions:  1) you say that you are B12 deficient, did they test your iron levels too?  If not, you really ought to be checked for deficiency and, 2) did they check your thyroid function, as an overactive thyroid can be cause rapid heartbeat and a lot of coeliacs have thyroid issues? Cristiana        
    • Jmartes71
      Hello still dancing around my celiac disease and not getting medically backed up considering Ive been glutenfree since 1994.All my ailments are the core issue of my ghost disease aka celiac disease. Im angery because the "celiac specialist " basically lightly dismissed me.Im extremely angery and fighting for a new primary care physician which is hard to do in Northern Cali.So currently without and looking.Im angery that its lightly taken when its extremely serious to the one who has it.My only evidence is a brochure back in the days when I got news letters when I lived at my parents.It was published in 1998.I was diagnosed before any foods eliminated from my diet. Angery doctors don't take seriously when Im clearly speaking.I did write to the medicine of congress and have case number.
    • Scott Adams
      I totally get this. It's absolutely a grieving process, and it's okay to feel gutted about the loss of those simple joys, especially at 18. Your feelings are completely valid—it's not about being ungrateful for your amazing boyfriend, it's about mourning the life you thought you'd have. That "tortured by the smell" feeling is so real. It does get easier, I promise, but it's okay to sit in the sadness and just vent about how much it stings right now. Thanks for sharing that. Celiac.com has published a book on our site by Jean Duane PhD called Gluten-Centric Culture, which covers many of the social aspects of having celiac disease: This chapter in particular covers issues around eating with family and others - Gluten-Centric Culture: Chapter 5 - Grabbing A Bite Together:    
    • Scott Adams
      Many of us with celiac find that the fillers in medications can cause a reaction, and sometimes our bodies just process things weirdly. That "rebound muscle pain" and "burning feet" you described sounds awful and is a huge red flag. It's frustrating enough managing the diet without medication causing setbacks. So sorry you're dealing with this, but you're definitely on the right track by connecting the dots. You can search this site for prescriptions medications, but will need to know the manufacturer/maker if there is more than one, especially if you use a generic version of the medication: To see the ingredients you will need to click on the correct version of the medication and maker in the results, then scroll down to "Ingredients and Appearance" and click it, and then look at "Inactive Ingredients," as any gluten ingredients would likely appear there, rather than in the Active Ingredients area. https://dailymed.nlm.nih.gov/dailymed/   
    • Scott Adams
      It's so tough when you're doing everything right and still get hit with it. I'm glad you're figuring out a system that works for you—the peppermint tea and rehydration powders are smart moves. It sounds like you've really learned to listen to your body, and that's half the battle. Sticking to simple, safe food at home is the best way to build yourself back up. It's great you can take the time to rest properly. Thanks for sharing what works; it's a big help to others figuring this out too. This article, and the comments below it, may be helpful:    
×
×
  • 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.