Rejecting the thyroid meds: I feel like my body... - Thyroid UK

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Rejecting the thyroid meds

KD714 profile image
20 Replies

I feel like my body is rejecting the thyroid med. Does or has anyone felt this way? If so, what are you doing to correct this or what did you do to overcome this?

When I take it I have extreme pain in my joints. I am hypo and on a dose of 12.5 a day. I need about 90mcg but cant take it without getting in extreme pain.

Kim

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KD714 profile image
KD714
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20 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Sometimes this can be due to certain brands that don't suit some people, othertimes it can be due to low vitamins or length of time untreated. What brand of levo are you taking?

KD714 profile image
KD714 in reply toJaydee1507

Thank you for replying I take Synthroid. What do you mean low vitamins? What test measures low vitamin?

jgelliss profile image
jgelliss in reply toKD714

Synthroid did not work for me . I had palpitations from it. The fillers in Synthroid did not agree with me. Once I switched to another brand it made a tremendous difference.

PurpleNails profile image
PurpleNailsAdministrator

What do your results say?

You need results for TSH, FT4 & FT3.  With lab range.  

90mcg of ?levo? Is very low dose, Athletes tend to need higher than average. Are you sure you were adequately replaced on this dose, you may have been hypothyroid at this stage?

  Having a fraction of original dose means you will now be hypothyroid & likely have nutrient deficiency too, this can often make tolerating replacement hormone more difficult,  because it doesn’t absorb and convert how it would in those with optimal nutrient levels.   

Have you tried splitting the dose throughout day? 

Do you always have same brand? You may have been given a type which doesn’t suit? ie the fillers in the brand are causing an issue.  

Have you had any of the test recommended in last post?

Are you in UK? put country in profile. 

KD714 profile image
KD714 in reply toPurpleNails

My TSH is 8.5. Yes I do split my dose 3x a day right now. I switched from NP thyroid to Synthroid about a month ago due to the same reason. My TSH is 8.5 and that continues to decrease since i am taking less medicine. I am extremely worried. I live in the U.S. How do I test my nutrients level?

PurpleNails profile image
PurpleNailsAdministrator in reply toKD714

The TSH ( thyroid stimulating hormone) is a pituitary hormone which signals the thyroid to make hormone.  If thyroid levels are low is rises to signal thyroid to produce more.  So if your taking less thyroid your would be expecting it to rise.  If thyroid levels rise it can decrease, but the TSH is not reliable.  

Most feel well with TSH in lower part of range eg 1 and FT4 in top 3rd of range with FT3 at least half way.

Do you have a primary care physician who would arrange test some nutrient testing? The key ones being - folate,ferritin, vitamin D & B12.  

In UK the majority receive nationally funded care, but rules limit what can be tested so many use private blood testing companies to obtain complete testing.

You may have similar options where you can arrange blood tests directly without a doctor arranging?

How long were you taking NP thyroid? Did you always have an issues with NP.

  What were your levels like when you were taking it? NP thyroid is natural desiccated thyroid - containing T4 & T3. 

Synthroid is synthetic T4.  Your T3 levels might now be very low as your body needs to convert it from T4.  

Poppy_Ann profile image
Poppy_Ann

Hi there KD14, if I were you I would stop taking it or only take as much as you can withoutpain and tell your doctor as soon as you can if it is causing you that much pain something is wrong, every one is different where 99.9% of people can take it without any reaction there is always the odd .1% of people who will get a reaction from it, make sure your documents state that you are allergic to it so you don't get put on it again, for me I am allergic to Tramadol (pain killer) Gabapentin (painkiller) and pain I am on permanent pain killers which I have to change from one to another when my body gets use to them I take 5 different ones at a time if you include paracetamol which my doctor said most people ignore for high levels of pain but what they do is increase the effects of all the others, I take them when the pain is high which it can be for up to a month at a time when it is very high I cannot even get out of bed without ending up on the floor and have to crawl if I want to do anything like get food or drink or more tablet's.

Good luck finding something that works for you.

Regards Poppy Ann.

KD714 profile image
KD714 in reply toPoppy_Ann

Omg I hope you get relief. I have taken all the other types with the same results ie some type of reaction. I am so worried about my body shutting down from lack of medicine.

Hookie01 profile image
Hookie01

Hi, I too have been the same. Used to take 125/150 alternate days. If I try to take more than 100/125 a day my shoulders, elbows and feet hurt to the point i can barelywalk. I am currently trying to add some T3 and I changed brand, but going back to my old one as feeling very spaced out and depressed on different brand. Can I ask how old you are?

KD714 profile image
KD714 in reply toHookie01

I am 58.

Hookie01 profile image
Hookie01 in reply toKD714

i was wondering if mine was something to do with menopause. Wh brand do you take?

KD714 profile image
KD714 in reply toHookie01

I take Synthroid

Hookie01 profile image
Hookie01 in reply toKD714

I've never tried that, never been offered it.

SlowDragon profile image
SlowDragonAdministrator

previous post

healthunlocked.com/thyroidu...

Did you get full thyroid and vitamin testing results yet

Which brand of levothyroxine are you currently taking

Has this changed recently

Try taking split as two doses, half dose waking and half at bedtime

Might be more tolerable

Have you had coeliac blood test

Many thyroid patients develop gluten or in particular wheat intolerance, leading to joint pain

Lalatoot profile image
Lalatoot

How high a dose have you been on and how long were you on any higher dose?

Redditch profile image
Redditch

I think it's a coincidence and nothing to do with the meds. Joint pain is common you need to get your bloods done

See what your TSH is. It will be going up if you're not taking your meds and you will be in a whole lot of trouble,

Symptoms of rejecting the meds are

If the meds are T 4 only and you can't convert T4 to T3, you could get a high build up of T4 which could cause palpitations.

Joint pain is not related to your medication it could be a result of being hypo or Menopausal or an infection or another auto immune issue but it really isn't your medication, please get a test and take your meds.

HashimotoSandy profile image
HashimotoSandy

Yes I cant take Tevo Brand at all.. so ask you doctor to request a differing one, or if you repeat online, state that you are allergic to the brand youre currently on and that you need to try a different one. They will always choose to supply you with the cheapest brand possible, but some just dont work or I feel sick or headachy xxxxx

If that doesnt work then Id ask to see your endocrinologist.

jamesal0 profile image
jamesal0

You will get joint pain from extreme low thyroid as well as high thyroid. If your TSH bloods are saying you need thyroid. I would just take a 50 or a 75 and see how you go. Or change to NDT and see if that works better. Natural Desiccated Thyroid .

SilverAvocado profile image
SilverAvocado

Hi KD714,

You've don't seem to have had much solid advice, even though you've had quite a few replies. If you were hoping for more my suggestion would be to make a brand new post and include a bit more information.

Particulately any thyroid panel blood tests you've got, the history of different forms of thyroid hormone you've taken and how well you've felt on each of them, whether you've got Hashimotos autoimmune thyroid disease or had any antibody testing.

Also vitamin results, ferritin, folate, vitamin B12 and vitamin D. If you haven't had those vitamins tested before, a first step in looking into your situation could be to get those done. Usually the easiest way is to order mail order finger prick blood tests, but you may be able to get your usual doctor to do them.

This will give members a bit more to comment on. It sounds like your situation is quite unusual, and the thyroid treatment you've had so far has been quite unusual, too.

KD714 profile image
KD714 in reply toSilverAvocado

Ok thank you I will.

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