Jump to content
This site uses cookies. Continued use is acceptance of our Terms of Use and Privacy Policy. More Info... ×
  • 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

Starving After Starting Thyroid Meds


SleepyBunny

Recommended Posts

SleepyBunny Apprentice

Ok I've been gluten-free for almost a year and df almost that long also. Found out I'm also hypothyroid. Started levo didn't really feel much better. Went to a dr to talk about adding t3. She ran tests and even though my TSH had started creeping up just because it was in normal range she just called it a day. So I stooped taking the levo. (I know, I know) I finally ended up going to a wellness clinic. He had me fast, detox diet and take a bunch of supplements. I had low morning cortisol, tummy issues, and blood sugar issues.

After the detox diet he told me to start adding in food but around that time my body started going crazy and I started getting bad anxiety. I couldn't tell if my tummy was upset from adding something in or anxiety. So I've been waiting and trying to add stuff in slowly. The wellness dr finally told me to start armour, I got it filled at a compounding pharmacy cos the one I got at the regular pharmacy gave me a reaction. (I'm thinking corn) Well I've been on these Thyroid caps for about 2 weeks. I eat about 6 times a day but now when I get off work at night I just wanna stuff myself :( I really want to lose weight. I've been pretty much eating rabbit food and exercising and have only been losing like an ounce at a time. How am I supposed to lose weight if it seems like these pills are making me hungry? Also I'm kinda getting bored with my diet. Boredom and hunger are not a good combination! I still feel like I could use more energy. And I've been sleeping a lot again. I'm wondering if it's from eating carbs/sugar before bedtime?

Sorry for the long post. Any ideas, thoughts, suggestions or similar stories would be appreciated. :blink:

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

When my metabolism comes up from thyroid medicine I will lose weight even though I eat more. I think you can burn more food faster with your thyroid working correctly. Eating carbs/sugar before bedtime sure makes me tired!

Link to comment
Share on other sites
SleepyBunny Apprentice

How long does it take for the weight loss to show on the scale? I don't want to eat more but I get so hungry! Lol When do you take yours and how much are you on?

Link to comment
Share on other sites
Skylark Collaborator

I'm on 90 mg of Acella thyroid, and I take it in the morning. It's a generic for Armour. I gradually lost ten pounds in about three months after getting on the right dose.

Link to comment
Share on other sites
SleepyBunny Apprentice

Do you feel like you have more energy? How long would you say it took you to find the right dose? Sorry for all the questions! I'm just ready to feel normal already :) I've been sleeping later again and I don't want to slip back into that. I actually get stuff done now and when I sleep late I'm having to rush to get things done and I feel like my day is shot. Any other benefits you've experienced being on Armour? :)

Link to comment
Share on other sites
Skylark Collaborator

I have less trouble with depression and more energy on armour compared to levothyroxine. It also fixed the autoimmune inflammation I kept feeling at the base of my throat.

It usually takes me about 4-6 weeks to start to feel better on a new thyroid dose, and as long as three months for symptoms to fully resolve and TSH to fall. You can still have some ups and downs for six months or so. I do have a little more energy on the armour, though I'm perimenopausal so my hormones are still out-of-whack.

Also my Dr. never told me this but stay away from soy. It's really bad for your thyroid. Go easy on uncooked cruciferous veggies like broccoli, cauliflower, or cabbage. They're OK cooked.

Link to comment
Share on other sites
SleepyBunny Apprentice

Yeah after my detox diet I tried adding soy (gluten free soy sauce) and didn't feel too good so I think soy is gonna have to go anyway. Luckily I found a soy free and gluten free soy sauce :D I guess I'm going to have to learn to like nori for sushi. The soy wraps were so good but oh well :( I'm on 30mg. I just hope the dr works with me on the way I feel instead of just the numbers. I take mine at night just because empty stomach wise it's just easier. But I wonder if it's keeping me fom feeling if it's working since the t3 wears off quicker.

Link to comment
Share on other sites

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



Celiac.com Sponsor (A8-M):



Skylark Collaborator

I think you just need a little more time. :) If you can time taking it in the morning it might be good but it's more important to take it on an empty stomach.

Link to comment
Share on other sites
SleepyBunny Apprentice

I know I just need to be patient. I've only been on it for 2 weeks and it's a low dose. I've just felt like crap for so long I just want to be well already :) Thank you for always responding to my posts. You're a smart (gluten free) cookie :D

Link to comment
Share on other sites
GF Lover Rising Star

Hi Sleepy. You mentioned that your tsh was climbing when you last saw your Doc. Did the Wellness Clinic also test your levels? It may take up to a year to get the correct dosing. Also, people have different symptom reduction with trying different "brands" of thyroid meds.

And remember, thyroid disease is for life, just like Celiac. No starting and stopping. Thyroid issues can become very serious, very fast, if not addressed correctly. You should also have your levels checked at the very least, every four months until the level is stable. Then once a year should be sufficient, but always consult your Doctor on these matters.

One more note, there are alot of websites offering natural "concoctions" for thyroid disease. It is simply not the way to go. You need to get it under control. This is just my opinion on natural remedies.

Good luck getting better. :D

Link to comment
Share on other sites
Skylark Collaborator

Ack. I hit the minus when I meant to vote your post up, Colleen! Those buttons are too small. That's great advice about not stopping and starting thyroid meds. Very important!

Link to comment
Share on other sites
sa1937 Community Regular

I just plussed her...so when someone else also does, it'll all be good. smile.gif

Link to comment
Share on other sites
GF Lover Rising Star

I just plussed her...so when someone else also does, it'll all be good. smile.gif

Wood hoo I'm normal again. Actually I had no idea what those buttons did. :P

Link to comment
Share on other sites
sa1937 Community Regular

Wood hoo I'm normal again. Actually I had no idea what those buttons did. :P

You're better than normal!!! I just plussed you again. laugh.gif

Link to comment
Share on other sites
GF Lover Rising Star

What does that mean them. I'm up 1 green. Does that make me awesome? Seriously, what does it mean? :unsure:

Link to comment
Share on other sites
Skylark Collaborator

I just plussed her...so when someone else also does, it'll all be good. smile.gif

Thanks! B) Some people pay attention to the post ratings so I always feel bad when I goof.

Link to comment
Share on other sites
SleepyBunny Apprentice

I know I shouldn't have stopped my meds but I was so unbelievably frustrated :( I started compounded thyroid about 3 weeks ago. Some days I feel pretty good (not necessarily as good as I think I should feel) and others I feel like this is never going to end :( The wellness dr did not test my thyroid. I showed him results from past drs and actually got my gp to prescribe the thyroid med. My gp wants to test me soon to check my levels. I want to up my meds myself cos I'm starting to feel tired a lot again. :( It's to the point of we're it's almost impossible to wake up when I have to work in the morning. I keep looking for reasons to go home or call in. The wellness dr has me eating better but also wants me eating like 6 times a day. When all I want to do is sleep it makes it difficult to cram all that food in. I find myself craving sugar (fruit). I ate a rice cake with honey almond butter before bed last night and it put me in a sleep coma. :( It just seems like every time I start to feel better something screws it up and it's so hard keeping track of all of this.

Link to comment
Share on other sites
Skylark Collaborator

Carbs make me tired. I also am feeling a little better since I dumped dairy. Turns out I'm somewhat intolerant to it and the intolerance was making me tired.

Link to comment
Share on other sites
SleepyBunny Apprentice

I'm df also. It just sucks that my body seems to punish me for the smallest things :( I need to call my dr and have him increase my thyroid medication. The past 2 days I've been sleeping till 3-4 in the afternoon :( I just hope he does it without me having to go in cause I can't call in anymore for a while.

Link to comment
Share on other sites
beachbirdie Contributor

I'm df also. It just sucks that my body seems to punish me for the smallest things :( I need to call my dr and have him increase my thyroid medication. The past 2 days I've been sleeping till 3-4 in the afternoon :( I just hope he does it without me having to go in cause I can't call in anymore for a while.

With thyroid, you need to make all your changes slowly. It is very easy to "miss the mark" if you change doses too quickly because especially with the T4 part, it takes weeks for the levels to stabilize. The general recommendation is to NOT change meds sooner than 5 or 6 weeks after a previous dose change.

As for the T3, if you have the patience and the will, the absolute BEST way to regulate the T3 part is to take the T3 separately from the T4 and dose your T3 every few hours through the day. Helps overcome the problems with the short half-life, as well as the "surge" that happens a couple of hours after taking your dose. It's a pain in the neck though ;).

Whatever you choose to do as far as the timing of your dose, just make sure it's consistent. It doesn't hurt to take it with food, but you must ALWAYS take it with food if you decide to do it that way. The testing will catch up to your habits. If you take at bedtime, you must ALWAYS take it at bedtime.

The other thing is, make sure you do NOT take your T3-containing meds on the day of testing. The T3 surge can give you a very high reading that will make you look hyperthyroid when you really are not.

Link to comment
Share on other sites
SleepyBunny Apprentice

I've been taking 30mg of Thyroid which is lower than what I was taking with the levo. I believe it's equivalent to 50mcg of levo? I was taking 75mcg and even then with my last blood test my TSH had started creeping up again. I know I need to take this slowly but it's not easy :( I'm so tired of having no energy and sleeping a lot. Even my husband has noticed. He said you were doing better and now it's like you're in slow motion again. I called the drs office to see if he can bump it up. I have labs in 3 weeks so it should give it time. I actually bumped up my dose myself last night. I know I know!!! But I'm sure you guys know how desperate it can get when you feel this way. I'm on 30mg and split one. So I took 45mg. If he bumps me to 60mg I'll take 45mg till I finish what I have just to ease into it. I do just take it once and at bedtime and I seem to do well that way. I'll give it time like you said. Thank you guys for responding it really helps calm me down. :)

Link to comment
Share on other sites
Skylark Collaborator

I hate modern docs relying on TSH. My grandmother was on Armour thyroid all her life after having her thyroid knocked out for Graves' disease. Her doctor told her to take more thyroid if she was tired, less if she felt speedy. When she was in the nursing home and got put on levo instead of her Armour she hated it!

30 mg of Armour does seem low after 75 of levo. I went onto 90 from needing 137 mcg of levo.

Link to comment
Share on other sites
SleepyBunny Apprentice

I hate modern doctors that just don't listen :/ That sucks about your grandma. If she's been on this med this long and knows and understands it they should respect that and let her keep taking it.

Yeah 30mg is low but I've been off levo for about 2 months so it's probably a good thing that he started me there. I felt a little better today after taking 45mg. I'm going to call the dr in the morning and see if he's going to increase it or if I'm going to have to go to his office and have a breakdown to show him how crazy this is making me :blink: lol I thought going gluten free was hard but this is definitely worse. I know it's going to take time.

How are you doing on your dosage? If you don't mind me asking what kind of hypo symptoms did you have? Are they gone now? If I've asked you before I'm sorry. Memory problems is one of my symptoms :huh: lol

Link to comment
Share on other sites
Skylark Collaborator

I had all the hypo symptoms in the book. Dry skin, hair falling out, tired, depression, brain fog, weight gain, balance problems, shivering cold in 70 degree weather. TSH was over 5.0 and I had tons of Hashimoto's antibodies. My Dr. upped my T4 and I still felt bad. Tried some T3 and my TSH was down but I still felt foggy and memory problems. finally got an endo to put me on natural thyroid. I'm OK physically now but my mind is still all screwed up even on the natural thyroid. :(

Link to comment
Share on other sites
SleepyBunny Apprentice

Ugh I know what you mean about the mind part. You feel fine for a bit then you're forgetting everything and your emotions are all over the place. After this weekend with all the sleeping/insomnia I fell like my brain is dehydrated. Upping my dose seems to be helping. After my brain rehydrates I feel that I'll feel better. I can't wait to get some energy so I can get back to working out. My body has felt pretty weak these past few days so hopefully that will improve too.

I've had most of the symptoms you've had too. People sure look at you funny when you wear a sweater when it's 100* outside :ph34r: Lol The wellness dr I've been seeing said I have hashimoto's too. I didn't think my tests showed that I did but I guess they did.

Are you still having trouble thinking right and remembering things? Do you think your dose needs to be tweaked or do you just need to wait for it to level out? Man me and you have such similar situations! :)

Link to comment
Share on other sites

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. - glucel replied to Sarah Grace's topic in Related Issues & Disorders
      6

      Sarah Grace

    2. - glucel replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss

    3. - knitty kitty replied to glucel's topic in Post Diagnosis, Recovery & Treatment of Celiac Disease
      4

      abnormal weight loss

    4. - knitty kitty replied to Neat1's topic in Introduce Yourself / Share Stuff
      7

      Maybe celiac, maybe just ncgs?

    5. - knitty kitty replied to Sarah Grace's topic in Related Issues & Disorders
      6

      Sarah Grace


  • Celiac.com Sponsor (A19):



  • Member Statistics

    • Total Members
      125,077
    • Most Online (within 30 mins)
      7,748

    Graleymary24
    Newest Member
    Graleymary24
    Joined

  • Celiac.com Sponsor (A20):


  • Forum Statistics

    • Total Topics
      120.8k
    • Total Posts
      1m

  • Celiac.com Sponsor (A22):





  • Celiac.com Sponsor (A21):



  • Upcoming Events

  • Posts

    • glucel
      OK maybe I will look at future blood test just for historical changes. I am taking b vitamins as I mentioned in my other post to you. Definitely interested in Benfotiaminefor intestinal issues. However I already seem to be feeling some improvement in diverticulosis. Constipation gone but I think that resuming glucosamine may have something to do with that as well as general healing. Beans are antagonizing for me but I eat them anyway every few days in the form of pasta as well as baked beans. gluten-free for 4.5 months so still experimenting. Thanks for the info.
    • glucel
      Thanks @knitty kitty, I read your v b info with much interest for last few months. Here is my weight per event: sept 8, 2022- 181 lbs june 1, 2024 gluten free july 4- 143.5 lbs july31- changed from regular b to methyl folate and b12. oct 8- 150 lbs So weight hopefully coming back albeit very slowly. So probably my villi may be healing and methyl helping although also eating potato chips every few days so that is probably helping too.  Taking 100 mg of b1 along with complex. I took all thiamine maybe 100 or so tablets. Brain fog diminished some and it seems swallowing trouble also diminished. Stopped taking it couple months or so ago and did not notice any reversals. I think I will finally look into bentofothiamine. Also eat 1/2 ounce liver every morning for additional v b support.                                  
    • knitty kitty
      Hello, @glucel, Unintended weight loss is symptomatic of Thiamine deficiency.  Our bodies use more Thiamine when we are ill and stressed.  Switching to a gluten free diet can also result in a lower intake of Thiamine.   Interesting Reading: Coronary Artery Bypass Graft (CABG) surgery depletes plasma thiamine levels https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2874825/ Gluten-free diet intervention reduces thiamine intake in two weeks... https://pubmed.ncbi.nlm.nih.gov/34583628/ This study found normal people, without Celiac Disease and malabsorption concerns, had a drop in Thiamine after starting a gluten free diet.  They went back to eating a gluten containing diet.  We don't get that option.  Gluten free processed foods are not enriched with vitamins like gluten containing counterparts.  Supplementing helps boost your absorption of essential vitamins and minerals.
    • knitty kitty
      Hello, @Neat1, Yes, neck and shoulder pain can be symptoms of Gerd, which is fairly common in Celiac Disease. Ask for a DNA test, too.  Celiac Disease is genetic.  If you've got celiac disease genes, further testing is warranted.  Some people have Celiac genes, but don't have active Celiac Disease.  If you've got symptoms, your genes are probably activated.   Diabetes, anemia and Thiamine deficiency can cause false negatives on antibody tests.  Some people with Celiac Disease are seronegative.   Thiamine deficiency can cause constipation and gastrointestinal symptoms.  Magnesium supplementation can help with that, too.  Nutritional deficiencies like these are common in untreated Celiac Disease. Keep us posted on your progress!
    • knitty kitty
      Not really.  Blood tests for vitamin deficiencies are not accurate.  You can have "normal" blood levels and have vitamin deficiency symptoms before blood levels change.  The brain sends messages to the body to release into the bloodstream any extra vitamins stored within cells of tissues and organs so that important organs like the brain and heart can keep getting a supply.  Even what you've eaten in the previous twenty-four to forty-eight hours can affect blood tests.  Taking vitamin supplements eight to twelve weeks before testing, will give falsely elevated results.   Because tests for Thiamine can be so inaccurate, as well as time consuming and expensive, the World Health Organization recommends taking Thiamine and looking for health improvements.  Thiamine is nontoxic, even in high doses.  Thiamine is water soluble and any excess is easily excreted in urine.  WHO recommends giving 500 mg/day of Thiamine Hydrochloride for several days and looking for health improvements.  Some people with Thiamine deficiency need higher doses (1000 - 2000 mg/day).   Benfotiamine, a lipid soluble form of Thiamine, can get inside cells without using the thiamine transporters on the cell surface,  which shut down during thiamine deficiency.  Thiamine Hydrochloride has to get in by transporters, or by passive diffusion, which requires higher doses.  Benfotiamine has been shown to promote intestinal healing.  300 - 1200 mg/day of  Benfotiamine are required. Allithiamine (Tetrahydrofurfuryl Disulfide TTFD) can cross the blood brain barrier without a carrier cell, so Allithiamine is really helpful with neurological symptoms, brain fog, balance issues, problems swallowing, gastroparesis.  50 - 1000 mg/day of Allithiamine.  Find the best dose for you.   I understand the skepticism about Thiamine.  If I hadn't lived through it myself....read my blog...I was skeptical myself, but I could feel myself dying and was grasping at straws.  Within a few minutes of taking my first dose of Thiamine, I felt better and was astounded at how simple the solution was.   Is nutrition even taught in schools today?  I learned basic nutrition in Home Economics, but that's been cut.  Dieting programs distract from nutrition and mostly count calories.   P.S. Riboflavin Vitamin B2 deficiency has been linked to migraines.
×
×
  • Create New...