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

Levothyroxine...how Do You Take Yours?


VeggieGal

Recommended Posts

VeggieGal Contributor

My dosage is 150mg one day then 175mg the next (had a tt last year). My symptoms seem to swing from hypo to hyper. I know I shouldnt take the medication close to having calcium and iron and think I feel better if I take my Levothyroxine before bedtime after drinking lots of water. But was wondering if any of you split your medication throughout the day ? My thinking is (I maybe wrong), would it help with levelling the meds in my body so the symptoms don't swing so much and possibly not create so much rt3?

Thoughts anyone?


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

I've only been on Armour, but at one time, I was cutting the dosage in half and taking it twice a day. It was supposed to supply a steadier stream of meds into my system.  Unfortunately, I wasn't compliant!   :(   I have tried taking it at night and it works fine for me as well.  Others complain that it "wires" them, but I was able to sleep well.  I did it so that I could have my coffee first thing in the morning instead of waiting 30 minutes to an hour.  I also dissolve or chew my tablet for better absorption.  Now I'm taking a steady dosage during the week and increasing my dosage on the weekends. I started this method when I, like you, was having wild hyper and hypo swings.  Finally, I went really hypo (reduced meds dramatically) and even though I suffered hypo symptoms, we slowly increased my dosage back to my normal dosage for years!  I think my swings were tied to having celiac disease and that last year of perimenopause (come December it will be one year without a period and I'll officially be in menopause!)  I am back to taking it in the mornings and it's working out okay.

 

By the way, this was all under the direction and advice of my MDs.  I only stood up when I told my new doc that I need my TSH to be under a 3 but above a 1 to feel perfect!

 

My swings happened for about a year and then it took about five months for the Armour adjustments.  It was pretty crazy!  I was crazy!  

 

There is hope.  Hope you're feeling better soon!  

VeggieGal Contributor

Thanks cyclinglady its good to know someone else has been through it. Glad its all sorted for you now :) . Unfortunately, whenever I mentioned Armour to my doctor or chemist they look at me blankly so I'm not sure its readily available in the uk.

I don't get wired as such by taking it at night but drinking so much water before bedtime doesnt help and I seem to get lots of vivid dreams. I think I'll try splitting the doseage day/night, I guess it can't hurt for a couple of weeks or so.

I think its sometimes difficult to work out whats a thyroid symptom and whats a celiac symptom as I've probably had both issues for years but slowly but surely I seem to be improving :)

nvsmom Community Regular

I take my thyroid meds in the night. When I was on only levothyroxine, I would take all of it (similar dose as you) in the middle of the night when I got up to use the bathroom. T4 has a long "half life" and stays in the system for days (as I understand it). Taking it throughout the day shouldn't make much of a difference. It is the T3 that is used up within a day; being the active hormone it can affect some people more. I take my natural desiccated thyroid (150mg) in the night too. I do tend to split it up very slightly - 30mg as I fall asleep and then 120mg in the night.  I vary it a small bit based on bed times.

 

I've never had problems with how I take mine. When I took too much, I tended to get the shakes, but WHEN I took my meds hasn't been a problem.

 

I bet natural desiccated thyroid is available in the UK, but perhaps it is like in Canada where the doctors don't prescribe such an old fashioned mediaction often. I had to doctor shop and try naturopaths to find someone willing to try it.... Good luck!

VeggieGal Contributor

Ah thanks for replying nvsmom. I really doubt I'll get hold of Armour so trying to do the best i can converting t4 only. I also get the shakes sometimes and wondered if it was a build up of too much t4 or converting too much rt3. I don't know my levels at the moment but I need to get re-tested as I suppose things may have changed since been gluten-free.

nvsmom Community Regular

If you think you need T3 too, Cytomel  is a T3 med given in the States. Maybe that would help?

VeggieGal Contributor

Oh we are so behind in the uk sometimes lol...I've asked about it, but again been given 'blank' looks. I'm not doing too bad, so I'll try other approaches like taking selenium and zinc...think I've read a few places it can help?? or maybe once my gut has healed etc things may improve naturally ... I hope :)


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



Celiac.com Sponsor (A8-M):



cyclinglady Grand Master

Ah thanks for replying nvsmom. I really doubt I'll get hold of Armour so trying to do the best i can converting t4 only. I also get the shakes sometimes and wondered if it was a build up of too much t4 or converting too much rt3. I don't know my levels at the moment but I need to get re-tested as I suppose things may have changed since been gluten-free.

Do get re-tested!  Your ability to absorb your meds will more than likely change as you continue on the gluten-free diet and heal.  I'm assuming that getting the "shakes" means that you are running hyper (I always feel muscle weakness and eye muscle pain).  My mother has Graves Disease (hyper) and has permanent eye damage.  I think that running hyper at times also contributed to my osteopenia and osteoporosis resulting in a spontaneous compression fracture and having celiac disease didn't help either!

 

As far as a natural old-fashioned thyroid med replacement, I'd give it a try.  I pay for it cash (not through insurance) and it's close to $10.00 a month.  Cheap!  

 

Here's a UK.org link that tells you how and where you can purchase it.  My old doc would not prescribe anything else and my new doc was skeptical and told me that my insurance might not cover it, but it's so cheap that I didn't care.  So, my new doc is happy to write the prescription.  It pays to call around and get price quotes too.  I purchase mine now at the Costco Warehouse Pharmacy.  

 

Open Original Shared Link

 

Good luck!

VeggieGal Contributor

Do get re-tested! Your ability to absorb your meds will more than likely change as you continue on the gluten-free diet and heal. I'm assuming that getting the "shakes" means that you are running hyper (I always feel muscle weakness and eye muscle pain). My mother has Graves Disease (hyper) and has permanent eye damage. I think that running hyper at times also contributed to my osteopenia and osteoporosis resulting in a spontaneous compression fracture and having celiac disease didn't help either!

As far as a natural old-fashioned thyroid med replacement, I'd give it a try. I pay for it cash (not through insurance) and it's close to $10.00 a month. Cheap!

Here's a UK.org link that tells you how and where you can purchase it. My old doc would not prescribe anything else and my new doc was skeptical and told me that my insurance might not cover it, but it's so cheap that I didn't care. So, my new doc is happy to write the prescription. It pays to call around and get price quotes too. I purchase mine now at the Costco Warehouse Pharmacy.

Open Original Shared Link

Good luck!

Thank you for that link, think I saw it before but forgot about it (brainfog again!). I'll contact them i've nothing to lose and would imagine natural thyroid replacement has got to be better.

Hope you're feeling better and healing now. Sorry to hear about your mum and her eyesight. I had graves, it was an horrible experience so i had the tt and yeah my eye muscles ache too at times but has improved since been gluten-free.

Yeah $10.00 a month is cheap... so definitely worth a try if I can get it. But like you say, I'll get retested first though.

Archived

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


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      131,902
    • Most Online (within 30 mins)
      7,748

    Patty6133
    Newest Member
    Patty6133
    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

    • trents
      Welcome to the forum, @Judy M! Yes, he definitely needs to continue eating gluten until the day of the endoscopy. Not sure why the GI doc advised otherwise but it was a bum steer.  Celiac disease has a genetic component but also an "epigenetic" component. Let me explain. There are two main genes that have been identified as providing the "potential" to develop "active" celiac disease. We know them as HLA-DQ 2.5 (aka, HLA-DQ 2) and HLA-DQ8. Without one or both of these genes it is highly unlikely that a person will develop celiac disease at some point in their life. About 40% of the general population carry one or both of these two genes but only about 1% of the population develops active celiac disease. Thus, possessing the genetic potential for celiac disease is far less than deterministic. Most who have the potential never develop the disease. In order for the potential to develop celiac disease to turn into active celiac disease, some triggering stress event or events must "turn on" the latent genes. This triggering stress event can be a viral infection, some other medical event, or even prolonged psychological/emotional trauma. This part of the equation is difficult to quantify but this is the epigenetic dimension of the disease. Epigenetics has to do with the influence that environmental factors and things not coded into the DNA itself have to do in "turning on" susceptible genes. And this is why celiac disease can develop at any stage of life. Celiac disease is an autoimmune condition (not a food allergy) that causes inflammation in the lining of the small bowel. The ingestion of gluten causes the body to attack the cells of this lining which, over time, damages and destroys them, impairing the body's ability to absorb nutrients since this is the part of the intestinal track responsible for nutrient absorption and also causing numerous other food sensitivities such as dairy/lactose intolerance. There is another gluten-related disorder known as NCGS (Non Celiac Gluten Sensitivity or just, "gluten sensitivity") that is not autoimmune in nature and which does not damage the small bowel lining. However, NCGS shares many of the same symptoms with celiac disease such as gas, bloating, and diarrhea. It is also much more common than celiac disease. There is no test for NCGS so, because they share common symptoms, celiac disease must first be ruled out through formal testing for celiac disease. This is where your husband is right now. It should also be said that some experts believe NCGS can transition into celiac disease. I hope this helps.
    • Judy M
      My husband has had lactose intolerance for his entire life (he's 68 yo).  So, he's used to gastro issues. But for the past year he's been experiencing bouts of diarrhea that last for hours.  He finally went to his gastroenterologist ... several blood tests ruled out other maladies, but his celiac results are suspect.  He is scheduled for an endoscopy and colonoscopy in 2 weeks.  He was told to eat "gluten free" until the tests!!!  I, and he know nothing about this "diet" much less how to navigate his in daily life!! The more I read, the more my head is spinning.  So I guess I have 2 questions.  First, I read on this website that prior to testing, eat gluten so as not to compromise the testing!  Is that true? His primary care doctor told him to eat gluten free prior to testing!  I'm so confused.  Second, I read that celiac disease is genetic or caused by other ways such as surgery.  No family history but Gall bladder removal 7 years ago, maybe?  But how in God's name does something like this crop up and now is so awful he can't go a day without worrying.  He still works in Manhattan and considers himself lucky if he gets there without incident!  Advice from those who know would be appreciated!!!!!!!!!!!!
    • Scott Adams
      You've done an excellent job of meticulously tracking the rash's unpredictable behavior, from its symmetrical spread and stubborn scabbing to the potential triggers you've identified, like the asthma medication and dietary changes. It's particularly telling that the rash seems to flare with wheat consumption, even though your initial blood test was negative—as you've noted, being off wheat before a test can sometimes lead to a false negative, and your description of the other symptoms—joint pain, brain fog, stomach issues—is very compelling. The symmetry of the rash is a crucial detail that often points toward an internal cause, such as an autoimmune response or a systemic reaction, rather than just an external irritant like a plant or mites. I hope your doctor tomorrow takes the time to listen carefully to all of this evidence you've gathered and works with you to find some real answers and effective relief. Don't be discouraged if the rash fluctuates; your detailed history is the most valuable tool you have for getting an accurate diagnosis.
    • Scott Adams
      In this case the beer is excellent, but for those who are super sensitive it is likely better to go the full gluten-free beer route. Lakefront Brewery (another sponsor!) has good gluten-free beer made without any gluten ingredients.
    • 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. 
×
×
  • 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.