Cannot tolerate Thyroid meds? : I have... - Thyroid UK

Thyroid UK

137,610 members161,357 posts

Cannot tolerate Thyroid meds?

jjyankee profile image
32 Replies

I have completely lost the ability to tolerate thyroid medications over the past year- the minute I try to increase dose- even in tiny increments I start to have terrible side effects that feel like hyperthyroid- anger, terrible irritability, hot flashes, restless, awful mood swings, depression , and chest pain! This makes me think that my meds are not being absorb into tissues and so are creating too much adrenaline/pooling? I've tried various meds/combos; levo, cytomel, NDT, and SR t3

I'm currently taking 37mcg levo/ 2.5 mcg t3 This is the most I can tolerate and still have to take a day off every several days- I'm now about to take a 24 hour saliva cortisol test as I truly feel like my cortisol is low all day and night.

All vitamins checked out fine except I need to have iron checked- I take lots of supplements that I have done a ton of research on (Myer's way multi vitamins, D, C, selenium, magnesium, holy basil, digestive enzymes, probiotic)

These are most recent blood tests which have gotten progressively worse over this past year. I did stop smoking on 1/18/18- relapsed for 2 months late summer and quit again on 10/1/18- I know quitting can also affect thyroid levels. I know I'm currently undermedicated; I well know where these ranges should be.

TSH 7.2 0.270 - 4.200 uIU/mL

Free (T3) 1.8 2.3 - 4.2 pg/mL

Free (t4) .83 0.90 - 1.70 ng/dL0.83 ng/dL

reverse t3 16.6 ng/dL 9.2 - 24.1 ng/dL

morning cortisol 8.0 6:00 - 10:00 AM: > 6.0 - 18.4 ug/dL

So just wondering what your thoughts are on this situation- I'm anxious to see iron and full cortisol levels- are there any other tests you would recommend?

Thank you so much for any thoughts/advice you may have.

P.S I've seen a cardiologist twice about chronic chest pain that occurs when meds are increased- had some tests, they said I was fine but I continue to have chest pain as soon as I try to increase dose even a smidgeon. : (

t3/rt3 ratio is 10.8 should not be less than 20

Written by
jjyankee profile image
jjyankee
To view profiles and participate in discussions please or .
Read more about...
32 Replies
humanbean profile image
humanbean

Chest pain could be caused by the low T3.

It can also be caused by low iron and/or ferritin. It is important to have a full iron panel before treating low iron/ferritin. If one is low and the other high it can be dangerous to supplement iron without fixing the underlying problem.

If you can't tolerate thyroid meds at all it might be caused by low cortisol or high cortisol.

The best way to test this is by doing a four-part adrenal saliva test which also includes a DHEA level as one of the tests. (There is no advantage in doing a five part or six part test - they just cost more.)

I'm guessing that you are from the US. If that is the case then you can find places that do adrenal saliva testing without involving doctors or insurance companies on this page :

stopthethyroidmadness.com/r...

When I first took thyroid meds I found it almost impossible to tolerate meds. It turned out that my cortisol was high. I found that I had to experiment endlessly with T3 to find a time of day when I could tolerate a tiny crumb. My cortisol was at its lowest (but still almost top of the range) at lunchtime(ish), and was way over the range in the morning. So I took my T3 about an hour before lunch or two hours after lunch. When I was ready to add a little more I would try an hour before my evening meal, or even at bedtime. Over time I was able to shift doses around, increase or decrease the number of doses I divided my T3 into, and eventually managed to tolerate some in the morning. But it was a long-winded and tiresome process.

jjyankee profile image
jjyankee in reply to humanbean

Thanks so much- your response is very helpful. I am currently waiting for a saliva test kit to arrive and will request a full iron panel as well. I didn't know that low t3 could cause chest pain- good to know but why do I only get chest pain from taking too much t3 I wonder?

Also- I'm a bit confused- did you have better luck taking your t3 when cortisol was higher or lower? I found this to be important-

Again- thanks so much for taking the time to respond

P.S I have read Stop the thyroid Madness along with several other books- determined to figure this all out!

humanbean profile image
humanbean in reply to jjyankee

I had better luck taking T3 when my cortisol was at its lowest. But every single result I had for cortisol was too high!

I've never tested cortisol and had a low result or even a low in range result. But other people have and they have struggled to tolerate thyroid meds as well.

So, ideally cortisol would be at the right level for the time of day to be able to tolerate meds.

When I found out my cortisol was high I started treating myself with supplements which lowered it. Eventually I was able to double my dose of T3.

jjyankee profile image
jjyankee in reply to humanbean

Yeah, from what I've read both high and low cortisol creates lots of problems- I think you and I have opposite problems! Mine starts off bottom of the range in the morning (had a blood test) and I'm pretty sure it stays low all day- I used to have the cortisol/adrenaline surges but not anymore. I went through many many years of very high chronic stress- I'm pretty sure my adrenals are fairly burnt out- will be interesting to see test results. Thanks again!

in reply to jjyankee

How can you tell if you have a surge?

jjyankee profile image
jjyankee in reply to

It's that fight or flight feeling but without cause- I'd frequently have a wired but tired feeling (like having way too much caffeine) and I'd get this feeling internally that felt like my insides were quivering (like in my stomach) - also a feeling of panic/anxiety. It was bad at night and caused insomnia- doc said my cortisol levels were flipped- low in AM but high at bedtime- now they seem to be just low all the time.

in reply to jjyankee

I just get hot flushes, but have had them for years! But since having Hashimoto's they seem slightly different and maybe more intense. Sometimes they help me feel less lethargic as well. I don't feel wired, just have a bit more energy

maymay28 profile image
maymay28 in reply to jjyankee

jjyankee, you stated that when you had the adrenal surges, they caused insomnia. how did you resolve this, most especially the insomnia? I think I'm going through the exact same thing. awaiting your response and thank you.

jjyankee profile image
jjyankee in reply to maymay28

I didn't solve it , I just think my adrenals crashed more and it was no longer so high at night. I was under a great deal of stress for years when this was at it's worst so my adrenals were pumping out tons of extra cortisol- finally everything just crashed; long term chronic stress really does a number on us- there are many adaptogens/supplements/vitamins that can help adrenals but as my doc said all the time- if you continue to live in a state of chronic high stress you really can't get better.

maymay28 profile image
maymay28 in reply to jjyankee

thanks for your response jjyankee. I just did the saliva test so waiting to see how I'm functioning cortisol wise. Just hoping to resolve this sleeping issue. Thanks once again.

jjyankee profile image
jjyankee in reply to maymay28

Good luck with that- I'll be doing that test this week too-

greygoose profile image
greygoose

Ignore the rT3 ratio, it is meaningless. Doesn't tell you anything.

jjyankee profile image
jjyankee in reply to greygoose

okay- that's good- I'd like to ignore it : )

Thank you

greygoose profile image
greygoose in reply to jjyankee

You're welcome. :)

JAmanda profile image
JAmanda

How old are you? I was concerned when increasing dose of levo as getting lots of hot flushes. Doc said that’s normal as at last your body is being allowed to have a normal menopause! Made sense to me. Now having lots of flushes but generally better. So next step HRT.

jjyankee profile image
jjyankee in reply to JAmanda

Hello JAmanda - I'm 61 and am way past menopause. I have been on HRT for many years- bio-identical progesterone cream and estradiol topical drops. These have worked very well- I do have occasional flushes but nothing compared to pre HRT-

Olsbird profile image
Olsbird

Hi. I always had trouble tolerating thyroid meds until I went gluten free. I’m non hashis. Still have some issues increasing my dose and bloods showing I was in need of more but, like you, the minute I start to increase I start to get symptoms mimicking hyper. I haven’t resolved yet but next step for me is a mix of t4 and t3. Not sure yet whether I will try t4 or stick with ndt for the t4 I need. Good luck and be interested to hear if and how you resolve your issue.

jjyankee profile image
jjyankee in reply to Olsbird

hello Olsbird - good luck with mixing -hope you find the right ratio. What I found was that the ratio of t4/t3 in NDT was much to high for me. I believe it's a 4:1 ratio. Now I'm taking like a 12:1 ratio! I seriously hope to gradually raise the t3 (my level is so low) but until I have more testing I'll just continue to take a smidgeon. Also, make sure you break your t3 dose up and not take all in one dose.

Olsbird profile image
Olsbird in reply to jjyankee

Thanks.

I had never heard of holy basil (Saint Basil? :-D ) so decided to look it up. Not sure if Myers Way is a good idea either, but so far don't have enough evidence one way or the other.

About Holy Basil, maybe it would be best to leave it off

webmd.com/vitamins/ai/ingre...

"Hypothyroidism: People with hypothyroidism have low levels of the thyroid hormone called thyroxine. Holy basil might lower thyroxine levels. In theory, holy basil might worsen hypothyroidism."

jjyankee profile image
jjyankee in reply to

Ahhhh- that's not good. I know that holy basil an adaptogen that is very good for stabilizing cortisol and lots of other things but will have to look into it lowering t4- thanks.

in reply to jjyankee

I never heard of it, but the name was intriguing. So many things are good for one thing and not for something else!

Annkapp profile image
Annkapp

Mineral status is another thing that can effect how well thyroid medicine is absorbed into the cells. I would recommend doing a HTMA hair testing mineral analysis. You WILL NEED an experienced practitioner to interpret the results. For instance I found out I was low in calcium and especially potassium. By taking these minerals over the course of a few months I am able to slowly tolerate more thyroid medicine. With minerals you must go slow (not too much at once) and can only do a few at a time (because each mineral has other minerals that are antagonistic so you can’t take them at the same time). The whole mineral balancing program takes about a year (depending on your mineral deficiencies). I am only two months in and have already felt a shift in how my body operates. I tried mineral testing because I have tried everything else including other hormone replacement, all kinds of vitamins, blood tests, saliva tests, changing diet, genetic testing, etc. I also took minerals like zinc, selenium and iodide specific for thyroid hormone conversion.

jjyankee profile image
jjyankee in reply to Annkapp

Thanks Annkapp this is good to know- I do take selenium and magnesium plus a multivitamin with minerals.

Hafa profile image
Hafa

Have you had a blood test for liver function? When I was going between hypo and hyper my liver enzymes were up (Gamma specifically). This could be interesting, if the doctor thinks you are not metabolizing the thyroid medicine

jjyankee profile image
jjyankee in reply to Hafa

Hmmmmm- something else to consider. I’ll wait to see results of iron and cortisol tests then take it from there- might need liver test too. Thanks so much for the info- trying to solve this puzzle is enough to make one crazy!

Jeppy profile image
Jeppy

Hi

Can relate

For me,iv improved slowley taking adrenavive, the important vits and gut healing, thrn i find i can tolerate levo at higher dose but to put in the other support iv had for sux werjs now, is accupuncture ny Chinese therapist, she insists its the balance or inbalance of chi and not all about western medicine? All i know is iv shifted and feeling the best iv been in years with energy so for me, its the whole thing, holistic, and now i can actually practise mindfulness

Lots of luck its a minefield at times, when my tinitus ceases il have hit jackpot status, jount pain quite bearable now and the vertigo no more 🤞

Jeppy profile image
Jeppy

Oh and she said to cleanse kidneys which sit above adrenals, was basically cherries berries coconut milk spirinila and a powder protein smoothy for two meals a day then healthy tea x 3 days???? I know, difficult when so much to think sbout but i did feel calmer

helvella profile image
helvellaAdministratorThyroid UK in reply to Jeppy

I hope she didn't actually say that! In the usual upright human, the adrenals are above / on top of the kidneys.

Simple picture:

en.wikipedia.org/wiki/Adren...

Jeppy profile image
Jeppy

Hi

😁. Yes take point think mainly it is another consideration possibly to balance body and get working optimally for your highest good, all takes a ‘hammering’ when system working so much harder sometimes for years

I give grattitude daily for this site and certain kind members that kept me afloat when i couldnt see wood for trees literally after many unucessary struggling years....

I guess il be ‘at it ‘ for the rest of my days but with grattitude 🙏🏾

jjyankee profile image
jjyankee

Yep- this site is amazing. I'll just keep learning and plugging away. I'm fortunate to have a very progressive doctor. Thanks so much for your response.

Msmustang1981 profile image
Msmustang1981

Hi jjyankee,

I know this post is a little old, but I was curious if you ever found an answer to your problem? Your post could have been written identically by me! I need thyroid medicine to live but can’t take any without getting horribly sick like you have described. I’m trying to manage even the tiniest crumb and often times cannot. Doctors here are baffled! I’d love to hear from you to see how you are. Thank you!

You may also like...

Can’t tolerate my thyroid meds

hopes for but still feel terrible if I increase past 1/4 grain. If I increase any of these...

Not tolerating thyroid meds...help please

I've been told that I also have adrenal fatigue but all of the things I'm trying to do to help it...

Cannot tolerate Levothyroxine

Been increasing Levo from 50micro grams to 125 since last March. Since taking Levo I have felt worse

Please help - Can't seem to tolerate thyroid meds anymore!

always 36.1 C. If I try to increase my dose I end up not being able to take anything for about a...

Tips for tolerating thyroid medication

able to tolerate thyroid hormones (that's T4, T3, T4+T3, NDT, any combination of those). I have...