can I become intolerant to levothyroxine

[Prosecco1997]

hello took Levo yesterday felt shaky and unwell , then realy lightheaded at bedtime , kept jolting awake to passing out feeling , did not take my heart meds , today took no levothyroxine did not get no symptoms, this as been an ongoing problem trying to see which meds are making me feel so ill , can levothyroxine make you feel ill ?

[humanbean]

You could become intolerant to one of the other non-Levo ingredients in your tablets. For example, depending on brand, mannitol and acacia cause problems for a fair number of patients. It would be worth checking the ingredients of the brand you've been taking and then looking for one which has different ingredients.

The second most likely thing is that you are wrongly dosed.

The third thing I can think of is that your conversion from T4 to T3 is getting worse and you need to take Levo AND T3 to have a chance of feeling well.

[Anthea55 in reply to humanbean]

Here's the post with a spreadsheet showing the extra ingredients by brand for current UK brands last December.

healthunlocked.com/thyroidu...

Another suggestion which I read (sorry don't know where) is that some people may be sensitive to colours on the tablets.

What brand of levo have you been given?

Have you looked at the patient info leaflet which came with the levo. There should be a section saying what other meds disagree with it.

I suggest that you take it back to the pharmacy or your doctor and explain how unwell it has made you.

[humanbean in reply to Anthea55]

I think this reply might have been written for Prosecco1997 rather than me.

[Anthea55 in reply to humanbean]

Hi humanbean , my reply was for both of you. I've understood that the person who writes the post gets sent all the replies. That's why I placed my reply after yours as it expanded on your comments about excipients in levo.

[Prosecco1997 in reply to Anthea55]

Thankyou 🙂 I’ve been on accord since the beginning, but 25 mg has been wockhard , now mercury pharmacuticles So 75 accord 25 other brands, I didn’t take no thyroxine today and have felt better than when I took it yesterday ?

[Anthea55 in reply to Prosecco1997]

That's a real mish mash of different brands. We are usually advised not to mix brands!

Can you get a pill cutter and just stick to accord? Then you can get the right dose in one brand.

Might confuse your pharmacy!

I think you can get away with not taking thyroxine for a day or two, but not much longer, You do need to go back to your pharmacy and/or your doctor so that they can sort it out.

Good luck.

[inthedoldrums]

I became very unwell with Levothyroxine and one of many nasty side effects was the very frightening feeling of passing out in bed at night. I didn't have any knowledge back then but now know that I was not converting T4 toT3 very efficiently as I have a faulty gene that causes this. It is D102. So a lot of the T4 from the Levothyroxine gets converted to reverse T3 and this blocks active T3 from reaching the cells so you in fact become more and more hypothyroid and unwell even when you are taking your Levothyroxine.

There is a genetic test for this faulty gene which you might wish to take. I inherited it from both sides of my family so it was pretty conclusive. If this is the case then you would need a T3 prescription which can only be prescribed on the say so of an NHS endocronologist which is a challenge as you can see by many of the posts on this site.

Best wishes to you and I hope you get well.

[Prosecco1997 in reply to inthedoldrums]

Thankyou , yes I get this almost Everytime I start to dose off , I suddenly jolt and feel like I’m going to pass out , doctors said it’s very common , but I thought different, can I ask what other side effects did you get , did you stop you thyroid meds at any point and feel better

[BenLabrador in reply to Prosecco1997]

If you cannot get T3 prescribed you can buy it privately, PM me for sources, but you would need to get tested for your T3 level to make sure it is within a sensible range.

[inthedoldrums]

My ankles and hands started swelling, my joints became very stiff to the point that I couldn't get up and down from the floor without help. insomnia, weight gain without eating more than normal, irritability (my poor husband!), unable to walk very far without getting tired and bit dizzy, and later on it became worse - feeling toxic or poisoned and getting palpitations and shortness of breath and the strange feeling in my chest at night which preceeded the passing out feeling.

I am looking at my old notes to my doctor and it says that I missed a tablet for one day and felt better. I started cutting down on the Levothyroxine and would feel a little better for a while then have to cut back again. Then my GP got fed up and told me to stop taking them, So I did and started to feel much better over a period of about 2 weeks but then I spiralled into CFS which the doctor diagnosed.

So I wouldn't advise to stop completely without something else in place like NDT ot T3 as CFS robs your life and can take years to improve from. I am about to start a trial on T3 through a private prescription as I am still untreated at the moment.

I hope this is a help to you and best wishes for an improvement. Feel free to ask anything else.

[Wob58]

I get this funny feeling when I am lying either on my left or right side. I have to turn over because I feel as though I am cutting off the oxygen to my brain. I mentioned to the hospital when I was in A and E last October, but they said that's normal. I am on 75 mcg of the Teva brand. Perhaps I need to review my brand. I need to be on it for life as I have had a partial thyroidectomy.

[Daffers123]

this happened to me a few years back and it turned out the filler had been changed to acacia powder.i changed from mercury to Wockhardt25which (had) the least fillers

[Prosecco1997 in reply to Daffers123]

Thankyou , I rang chemist , but they trying to say it dosnt make a difference? Do you take another brand with it

[helvella Administrator Thyroid UK in reply to Daffers123]

Just to clarify so that no-one gets the wrong impression:

There have been no changes to the ingredients of ANY UK levothyroxine tablets in at least fourteen years. (One make was withdrawn and then re-launched a few years later as an entirely new formulation.)

Of course, companies might have changed suppliers of specific ingredients so it is always possible that there have been minor variations like getting microcrystalline cellulose from supplier A rather than supplier B. But no make has either added or removed, nor substituted, any ingredient that is listed in the product documentation.

Companies do not like making changes to ingredients because they have to go through full re-evaluation of the product.