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

Starving After Starting Thyroid Meds

SleepyBunny

Recommended Posts

SleepyBunny Apprentice
SleepyBunny
Posted

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:

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

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!

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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?

Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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? :)

Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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.

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

Celiac.com Sponsor (A8-M):


Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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

GF Lover Rising Star
GF Lover
Posted

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

Skylark Collaborator
Skylark
Posted

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!

sa1937 Community Regular
sa1937
Posted

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

GF Lover Rising Star
GF Lover
Posted

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

sa1937 Community Regular
sa1937
Posted

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

GF Lover Rising Star
GF Lover
Posted

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

Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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.

Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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.

beachbirdie Contributor
beachbirdie
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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. :)

Skylark Collaborator
Skylark
Posted

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.

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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

Skylark Collaborator
Skylark
Posted

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. :(

SleepyBunny Apprentice
SleepyBunny
Posted
  • Author

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! :)

Archived

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

Go to topic listing

  • Get Celiac.com Updates:
    Support Celiac.com:
    Join eNewsletter
    Donate
  • Celiac.com Sponsor (A17):
    Celiac.com Sponsor (A17):



    Celiac.com Sponsors (A17-M):



  • Recent Activity

    1. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      @Jane02, I hear you about the kale and collard greens. I don't do dairy and must eat green leafies, too, to get sufficient calcium. I must be very careful because some calcium supplements are made from ground up crustacean shells. When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly. This is safe...
    2. Jane02
      - Jane02 replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency. I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently...
    3. knitty kitty
      - knitty kitty replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      Hello, @Jane02, I take Naturewise D 3. It contains olive oil. Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets. Fractionated coconut oil is not the same as coconut oil used for cooking. Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the...
    4. Scott Adams
      0

      Penobscot Bay, Maine: Nurturing Gluten-Free Wellness Retreat with expert celiac dietitian, Melinda Dennis

      until
      Hello! Join me and treat yourself to a four-day, three-night restorative gluten-free retreat in a peaceful, private coastal retreat setting near Penobscot Bay in Maine. Dates: April 10-13, 2026 Enjoy engaging classes...
    5. Scott Adams
      - Scott Adams replied to Jane02's topic in Gluten-Free Foods, Products, Shopping & Medications
      9

      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product.
  • Celiac.com Sponsor (A19):

  • Member Statistics

    • Total Members
      133,329
    • Most Online (within 30 mins)
      7,748
    klkarius
    Newest Member
    klkarius
    Joined
  • Celiac.com Sponsor (A20):
  • Celiac.com Sponsor (A22):

  • Forum Statistics

    • Total Topics
      121.6k
    • Total Posts
      1m
  • Celiac.com Sponsor (A21):

  • Upcoming Events

  • Posts

    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      @Jane02, I hear you about the kale and collard greens.  I don't do dairy and must eat green leafies, too, to get sufficient calcium.  I must be very careful because some calcium supplements are made from ground up crustacean shells.  When I was deficient in Vitamin D, I took high doses of Vitamin D to correct the deficiency quickly.  This is safe and nontoxic.  Vitamin D level should be above 70 nmol/L.  Lifeguards and indigenous Pacific Islanders typically have levels between 80-100 nmol/L.   Levels lower than this are based on amount needed to prevent disease like rickets and osteomalacia. We need more thiamine when we're physically ill, emotionally and mentally stressed, and if we exercise like an athlete or laborer.  We need more thiamine if we eat a diet high in simple carbohydrates.  For every 500 kcal of carbohydrates, we need 500-1000 mg more of thiamine to process the carbs into energy.  If there's insufficient thiamine the carbs get stored as fat.  Again, recommended levels set for thiamine are based on minimum amounts needed to prevent disease.  This is often not adequate for optimum health, nor sufficient for people with absorption problems such as Celiac disease.  Gluten free processed foods are not enriched with vitamins like their gluten containing counterparts.  Adding a B Complex and additional thiamine improves health for Celiacs.  Thiamine is safe and nontoxic even in high doses.  Thiamine helps the mitochondria in cells to function.  Thiamine interacts with each of the other B vitamins.  They are all water soluble and easily excreted if not needed. Interesting Reading: Clinical trial: B vitamins improve health in patients with coeliac disease living on a gluten-free diet https://pubmed.ncbi.nlm.nih.gov/19154566/ Safety and effectiveness of vitamin D mega-dose: A systematic review https://pubmed.ncbi.nlm.nih.gov/34857184/ High dose dietary vitamin D allocates surplus calories to muscle and growth instead of fat via modulation of myostatin and leptin signaling https://pubmed.ncbi.nlm.nih.gov/38766160/ Safety of High-Dose Vitamin D Supplementation: Secondary Analysis of a Randomized Controlled Trial https://pubmed.ncbi.nlm.nih.gov/31746327/ Vitamins and Celiac Disease: Beyond Vitamin D https://pmc.ncbi.nlm.nih.gov/articles/PMC11857425/ Investigating the therapeutic potential of tryptophan and vitamin A in modulating immune responses in celiac disease: an experimental study https://pubmed.ncbi.nlm.nih.gov/40178602/ Investigating the Impact of Vitamin A and Amino Acids on Immune Responses in Celiac Disease Patients https://pmc.ncbi.nlm.nih.gov/articles/PMC10814138/
    • Jane02
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Jane02 · Posted

      Thank you so much @knitty kitty for this insightful information! I would have never considered fractionated coconut oil to be a potential source of GI upset. I will consider all the info you shared. Very interesting about the Thiamine deficiency.  I've tracked daily averages of my intake in a nutrition software. The only nutrient I can't consistently meet from my diet is vitamin D. Calcium is a hit and miss as I rely on vegetables, dark leafy greens as a major source, for my calcium intake. I'm able to meet it when I either eat or juice a bundle of kale or collard greens daily haha. My thiamine intake is roughly 120% of my needs, although I do recognize that I may not be absorbing all of these nutrients consistently with intermittent unintentional exposures to gluten.  My vitamin A intake is roughly 900% (~6400 mcg/d) of my needs as I eat a lot of sweet potato, although since it's plant-derived vitamin A (beta-carotene) apparently it's not likely to cause toxicity.  Thanks again! 
    • knitty kitty
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By knitty kitty · Posted

      Hello, @Jane02,  I take Naturewise D 3.  It contains olive oil.   Some Vitamin D supplements, like D Drops, are made with fractionated coconut oil which can cause digestive upsets.  Fractionated coconut oil is not the same as coconut oil used for cooking.  Fractionated coconut oil has been treated for longer shelf life, so it won't go bad in the jar, and thus may be irritating to the digestive system. I avoid supplements made with soy because many people with Celiac Disease also react to soy.  Mixed tocopherols, an ingredient in Thornes Vitamin D, may be sourced from soy oil.  Kirkland's has soy on its ingredient list. I avoid things that might contain or be exposed to crustaceans, like Metagenics says on its label.  I have a crustacean/shellfish/fish allergy.  I like Life Extension Bioactive Complete B Complex.  I take additional Thiamine B 1 in the form Benfotiamine which helps the intestines heal, Life Extension MegaBenfotiamine. Thiamine is needed to activate Vitamin D.   Low thiamine can make one feel like they are getting glutened after a meal containing lots of simple carbohydrates like white rice, or processed gluten free foods like cookies and pasta.   It's rare to have a single vitamin deficiency.  The water soluble B Complex vitamins should be supplemented together with additional Thiamine in the form Benfotiamine and Thiamine TTFD (tetrahydrofurfuryl disulfide) to correct subclinical deficiencies that don't show up on blood tests.  These are subclinical deficiencies within organs and tissues.  Blood is a transportation system.  The body will deplete tissues and organs in order to keep a supply of thiamine in the bloodstream going to the brain and heart.   If you're low in Vitamin D, you may well be low in other fat soluble vitamins like Vitamin A and Vitamin K. Have you seen a dietician?
    • Scott Adams
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By Scott Adams · Posted

      I do not know this, but since they are labelled gluten-free, and are not really a product that could easily be contaminated when making them (there would be not flour in the air of such a facility, for example), I don't really see contamination as something to be concerned about for this type of product. 
    • trents
      Desperately need a vitamin D supplement. I've reacted to most brands I've tried.

      By trents · Posted

      Contact them.
×
×
  • 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.