Update: Hashimoto s new to taking meds helpless... - Thyroid UK

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Update: Hashimoto s new to taking meds helpless, jitters....

Allie323 profile image
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Update by Allie323: Hello, its been 27 days since my other post I'm Hashimotos with 1/2 working thyroid who first tried thyroid meds (Armour 15mg. for 2 weeks 11/19 then stopped ) and ironically just stopped being able to fall asleep a year ago Jan2020. ( felt breathing was shallow, weak like air hunger)

I started trying thyroid meds recently(Nov Dec ) and wrote here if U check my old post. I was told to keep trying meds.. Now I'm not good, out of hope which, is impossible for me. I stayed on (self)medication but stopped Jan 6. I did 7-8 weeks. Prior, 14 mo ago, I tried a little Armour, 15mg. I think it made me feel ok, not great, some jitters but only did 2 weeks. 2 months later I couldn't fall asleep. Here now I tried a compounded sustained release T3 4mcg with t4 20mcg capsule I requested. I'm still sensitive to it and thyroid meds. I tried a 5mcg t3 S slow realease capsule (only) for several days too. I went back to t3t4. Felt jittery after few hours or anxious at midday (hyper?) but also felt good at times. T3 release doing this? I had chills, jitter inside, on it, then. later started getting dry sore eyes, throat felt sore, but I kept going. Tried doubling with 40mcgt4 8mcg t3. Felt something good but was concerned with side effects . The last 8 days I switched to 37.5 Synthroid t4 to eliminate the t3, to see if I only needed t4. I thought it was going good but felt bad. Did 25mcg. Added 5mcg t3 SR.better but mouth started burning not good. - I am sensitive to all medications- never took any my adult life nor aspirin. This year I had to do sleep medication and Gabapentin, starting last May. I got all the side effects and have to take low doses now. I also can't use the CPAP very well, can't fall asleep, it's for breathing not falling asleep. Maybe my tongue falls back and wakes me, its enlarged, a hypo symptom too. Also got pins and needles 1 1/2 years ago suddenly, in my toes- now in calves. I believe because I was untreated with my thyroid, this came on.

Off thyroid meds now, 18 days since 1/6. Jan 12 dragged my body in to a new GP my friend said helped her with thyroid when no one could. But he thought I was describing hyper symptoms trying t3t4 or all the thyroid meds I tried. Before he saw my blood work he thought its not my thyroid, maybe another immune disease? Gave me an ANA test and I was negative. So no Sjogrines? maybe burning mouth syndrome from too much thyroid hormone?...sigh. Blood was taken Jan 13. I'm now miserable, stayed in bed last 9 days, went to grocery shop. Dizzy all the time, light headed, burning in mouth, throat lips. Thyrotoxicosis now? Or under medicated, not enough medication, that's my question. Yet something felt good, I was standing stronger when trying thyroid medication. But I got scared about my dry eyes and mouth burn.

My body isn't like others who can try a little dose and just stop and be ok? Stopping Self dosing for 7-8 weeks, I'm still cold, fatigue, loosing my hair very much very sad, can't stand, so dizzy, these are hypo symptoms. and newly aching ALL over and in shoulders, I am now weaker. Got desperate to try all these medications-then didn't know if it could cause TED disease, eyes bulging from being hyper(?) or burning dry mouth-that scared me too, if I don't need meds. Yet I have half a thyroid and 20 years of hypo symptoms, hair loss, skin dry, not sleeping, tingling nerves, constipation, sinus inflamed, fatigue, anxiety bloating, weight loss not gain, etc. Right now I feel some chest pain and tightness with or without meds? Or- it's nerves. Don't even care about eating but trying to.

1/13 blood:Tsh 2.80iU/ml T3free still 2.40pg/ml( 2.2-4.4)no change t4 1.29 up from 1.26ng/dl (.90-1.70) but D 32 (30-100ng/ml) yes always low. B12 up 1,103 (232-1245, was 633, because had 3 b12 shots this winter) Iron 92ug/dls foliate 14.7 tpo antibody 202 tg antibody 349 Cortisol 12.9ug/dl a.m. (6-18.4)

I've changed. I was ok but the last 2 years I became this ill person since I bought/sold this old house that brought on neuropathy, stressed on my feet 2019, then a year later I couldn't fall asleep in Jan 2020. A year later now I still can't fall asleep? I fractured a hip last March from sleep meds, I fell on some stairs. All ok now, but that accident made my neuropathy, not sleeping, hashimotos worse. Had to take Gabapentin for nerve tingling. And this doctor is saying all my blood tests including CBC comprehensive and my thyroid even with antibodies is fine -Jan 13. I was just on thyroid medication does he realize? He suggested CPAP or a Mirtazapine increase 30mg to help me get to sleep. I take 1/4 15mg instead and I slept some more but these 12 months if I sleep any at all I always wake at 2-3am - this drug for sleep its an antidepressant so its not good to get hooked on. I could guess my adrenal glands are messed up even without saliva test, but cortisol tests am or pm are still always in range. I've done several disciplined diets for years, and exercised to help my Hashi symptoms and no thyroid drugs. A private doctor had me do bio estrogen patch and progesterone to help me sleep get balanced, but I stopped that after 3 weeks to do the thyroid hormone. This month I got desperate to survive by myself during Covid, being weak, not sleeping is bad, and not eating a lot, being I'm sad. Not sure thyroid hormone is the answer but what's left? My gut and everything else did not seem to be the problem. I was low energy and hair loss, fatigue and anxiety and dry skin, constipation sinus. clenching teeth, 20 years ago too-and had antibodies tested in 2012. Finally. Enodocrinologist said I had only 1/2 a thyroid- and hashimotos. The surgeon took more than a small piece he told me, at age 15, to remove my little benign nodule.

If anyone can even estimate what is going on with my body at this moment., I was under medicated and jittery or over medicated and jittery. I'm not writing to this GP yet, while lying here, I'm here instead. Wishing I could see inside me if I need the meds or need to clear them out and then do -what? I am now Clueless...it was my last hope, medication. Diet did not fix me these years before. (No one knows so I have to tell them something. ) I can go back to the private functional doctors I pay who prescribed the T3 or T4T3 or Synthroid but don't want to because they didn't have a real plan for me. I'm sensing I'm too hard to diagnose now. Regular doctors don't know how to help me. I'm in St Louis -I should drag myself somewhere if I knew someone. Mayo clinics? How to get in fast...ha. After 12 months of not sleeping and no little improving- I am overwhelmed.

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Allie323
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JAmanda profile image
JAmanda

I'm a bit confused by what you're taking and for how long really but a few thoughts... I have peripheral neuropathy when my thyroid levels are low - but it improves when they're higher. I hear gabaorntin is a difficult drug to get used to and I think it's unnecessary if you just get your thyroid levels up. It could be the thing causing you bad symptoms.

If you go off your thyroid meds, you will get symptoms!

I take all my meds first thing in the morning (got there by slow increases) 100 t4 and 20 T3 and I like it that way, taking it I spread throughout the day just gave me head pains and tinnitus.

I'd really focus on getting your t4 and T3 levels high in the ranges. I'd consider thinking that your symptoms are caused by under medication not the Levo or other thyroid drug themselves. Once you're taking enough, you should start feeling better.

When you post, you need to say the date of the tests and the ranges for your results as labs and countries have different ranges.

If I were you I'd start from scratch with just t4. Take a decent starter dose - 50 - for a week then do 75 for six weeks then test. Then do 100 for six weeks and test. Good luck.

SlowDragon profile image
SlowDragonAdministrator

Would agree with JAmanda

Start at the beginning. Just 50mcg levothyroxine, everyday without fail for minimum 6-8 weeks

Meanwhile working on improving low vitamin D too

Daily vitamin C to help support adrenals

You might need beta blocker to lower adrenaline

Adrenals try to compensate for lack of thyroid hormones and you feel tired and wired

JAmanda profile image
JAmanda in reply to SlowDragon

Yes, sorry 50 for 6 weeks not a week!

Allie323 profile image
Allie323 in reply to JAmanda

Hi JA...my post got sent before I was done and was underlined? I was dictating? End part was Hashimotos til after 20years of symptoms. Also 50 for 6 wks to start was close to 37.5 synthroid. Or tried 2 capsules (40mcg.t48mcg t3)-- I didn't persist long at all on either. I stayed at 20t4 4t3 1capsule felt jitters even with t3 being slow release, got dry eyes sore burn throat, & being told now I don't need meds if feeling jitters or hyper? I've wondered if the compounded t4t3 was any good..they are a reputable pharmacy and I figured less fillers than Levo brands to help my odds absorbing. First day trying t4t3 I felt really calm and good. Not so good by third day. How do you know to increase? You were hypothyroid in blood work not subclinical like me, I assume so it works for you. I know I may not be converting well, but docs don't. My bad reactions hesitated me to increase-get worse. I'm shutting down my thyroid not supplementing it.

JAmanda profile image
JAmanda in reply to Allie323

No I was sub clinical. Just over 5.

mimi2212 profile image
mimi2212

If you have access to someone that does Bioresonance Therapy it might help you a lot sort through your issues. Bioresonance is a safe non-invasive way to address the pathological energy sources of disease. It does not diagnose any diseases, rather identifies each component of your body from head to toe that is working effectively using sound frequencies.

I have Hashi’s, xerostomia, Sjogren’s, Hypothyroidism, GERD, IBS...the list goes on. My Hashi’s is now in remission...I have had scanning done monthly...now switching to every 30 days. Identified on the 1st scan was H-pylori, my bowels were actually acidic and my stomach alkaline (symptoms to a regular doctor are the same as too much stomach acid)

Some of your symptoms may be side effects of Levothyroxine, a new liquid form comes from Switzerland, in the U.S. being distributed to two mail order pharmacies. The trick...finding a doctor to understand and able to prescribe.

Make sure you are eating gluten free, dairy increases phlegm and never consume...SOY it increases TPo antibodies...worsening Hashi’s. Look to food to be your medicine.

Xylitol, Erythritol will help with your oral issues (PUR gum), increases saliva protecting your teeth. Dried Chinese licorice root, also helps. My oral issues were identified (before scanning) checking my oral PH...you might do the same.

Just remember 2 things: Big Pharma...for every drug you take to treat a symptom...another part of your body absolutely has side effects. Look for causes...don’t treat symptoms and.....this too will pass.

If you are using Pinterest...look for a “Pinner” Mimi Wells. There are many Boards that have information on Hashi’s, including recipes, an autoimmune library. Join Hashimoto’s 411...a support group on Facebook with moderators trained to interpret Labs’s. Be safe

Allie323 profile image
Allie323 in reply to mimi2212

Thanks. Will look up bioresonance. Have tried several things. One MD did meridian,

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