I had a full thyroid removal Oct. My first dosage after the cancer biopsy came back as clear was 120mg Armour by my Endo. My surgeon also manages meds and on follow up visit with him the daily panic attack type symptoms were attributed by him to be from to high a dose of the Armour. Then took 30mg armour and 25mcg l-thyroxine. Felt great on that, if a little too good perhaps. Next labs showed low thyroid levels and we have cut the Armour to 15mg and gradually increased the L-thyroxine to 100mcg in 25mcg doses.
Gradually as we have increased the L-thyroxine I have had an increase in what for me are classic symptoms of an inflammatory gluten response. A severity which I have not experienced in about 3 yrs. After doing the research on the drug and the manufacturer. I guess we all 3(Dr., me and pharmacist) are not confident we are getting a gluten free product even though Mylan claims we are.
Heard from the Dr today(the surgeon who manages my meds, not the Endo who I do not like) and he wants me off all thyroid meds for one month. In theory I agree with this. Kinda of a lets clean the slate and see where we're at start fresh idea. Biggest problem being and this is where the question finally comes in. That scares me so much. What kind of peril can it cause my body to have no thyroids for a month.?
Is this somewhat normal protocol? I need some info or reassurance. I actually trust this doc a lot he has been doing this for a long time and is a whole health kind of guy as well as MD. I just don't want to be so freaked out and paranoid about the worst case scenarios if I do go off the meds that I make my self even more inflamed and sicker.
Any help would be appreciated. Grey have a great respect for the responses I have seen from you on this board which is why I joined and decided to post here.
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mmilli
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I can't answer your question, sorry. But if you ever actually do come off all your thyroid meds, please make sure you have a health alert bracelet made and wear it at all times.
Mmilli, All UK medicines are gluten-free so it's not a gluten attack from Levothyroxine. My sister has been on Levothyroxine 100mcg for over 3 years and is awaiting results of colonoscopy biopsy, coeliac screen, pancreatic cancer screen due to chronic diarrhoea and gut inflammation for over a year. One of the things her consultant suggested was that Levothyroxine could be causing her gastric problems. She's been very happy and stable on Levothyroxine so isn't happy at the prospect of changing it.
I think the suggestion to come off Levothyroine (T4) for 4 weeks may be to see whether your gut symptoms improve. It isn't dangerous, thyCa patients have to come off T4 4 weeks prior to RAI but they usually have T3 to help for the first two weeks. You may actually feel better the first 10/14 days but it will be unpleasant and difficult after the second week and downhill until you are back on some form of thyroid replacement.
I'm thyroidless (thyCa & TSH to be kept suppressed) and came off T4 and T3 for 4 weeks in 2013. I spent most of it freezing cold and dozing in bed,other than shoving a ready meal in the microwave, feeding my dogs and using the bathroom. TSH rose to 107.5 but dropped back to 1.16 within 4 weeks of resuming 100mcg T4. I gained weight off T4 but lost it as soon as I was back on it, unfortunately. I was feeling quite well 6/8 weeks later but skin shedding, nails breaking and hair shedding took 6 months from when I resumed T4 to resolve. Subsequent Tg and TgAb negative so no recurrence after my TSH rose.
TSH >20 has been shown to impair driving reactions more than being over the drink drive limit so please don't drive until your TSH is lower.
Thanks for your reply Clutter it is much appreciated. I am in the US. If I go off the Levo my Dr. wants to start me on something from a compounding pharmacy so we can insure the medicine I do get when I start again is definitely gluten free. Unfortunately since US medicines are not regulated but reporting of gluten free is voluntary there are other meds that I take that could contain gluten at any time depending on the manufacturer it comes from when the pharmacy gets it and that can change frequently.
To compound the confusion my gluten systems are not gastro related except for some nausea. They are more neurological and central nervous system related. It took me 9 months and what seemed like a million doctors and specialists running tests and then telling me to see a psychiatrist before we finally got an accurate diagnosis. And like I said except for the occasional small hiccup things have been greatly improved there for a number of years.
Reading various posts today on this wonderful site has helped me in a broader sense to feel more relaxed about what is happening in my body. It seems like Levo and thyroid adjustment itself can mimic gluten reactions in whichever form they take.
Thank you so much for the reassurance about going of the Levo. Still haven't decided what to do. I had read somewhere that coffee inhibits the effectiveness of thyroid medicine. I am so addicted to that dumb beverage but I know for sure it is making me feel lousy right now and it is definitely inflammatory. Thinking right now maybe I should give it a few more weeks without the coffee. Its only been 10 days on the 100mcgs and maybe my body is just not wholly adjusted yet.
Finding this sight has made me feel much less alone and that has been most helpful. For whatever reason I tend to feel guilty and ashamed when my body doesn't act like a "normal persons" should so is nice to know there is somewhere to come where others may be struggling a bit as well.
Did any of those million or so doctors think to test your vitamins and minerals?
I'm afraid I don't know anything about gluten, coeliac or any of that, so can't advise you on that. I just know that it doesn't affect me in any way.
As to coming off the thyroid hormone, I really don't think that's going to do you any harm, as the others have said. A couple of years ago, on T3 only, I stopped taking it for 6 months (for reasons I won't go into here). I felt better with out it for quite a while. But after six months, I realised I was putting on a bit of weight, so had my TSH etc tested. Can't remember the other numbers, but TSH was 35. I've known higher! So, I went back on the T3 and lost the weight.
You know there are some people who just can't tolerate synthetic T4 - actually, I couldn't tolerate it in any form! - and I Wonder why your doctor thought you needed to take it. You say 'Then took 30mg armour and 25mcg l-thyroxine. Felt great on that, if a little too good perhaps. Next labs showed low thyroid levels and we have cut the Armour to 15mg' What exactly do you mean by 'low thyroid levels'? TSH? In which case, your doctor was wrong to change your dose if you were feeling great! Why fix it if it ain't broke? In any case, I thought cancer patients were supposed to keep their TSH suppressed? Did no-one tell you that?
Oh, and by the way, there's no such thing as feeling 'too good'! Do they really enjoy seeing us suffer?!?
I guess I failed to mention ( in an effort to keep long stories shorter which I don't do anyway) that by the time my labs were retested I was not feeling good anymore. T3 and T4 were both well below normal range, sorry don't have the numbers here and I would agree with the idea I was definitely feeling Hypo systems at that time: joint pain, fatigue. foggy head, muscles pains etc.,.
My thyroids tested non cancerous so that was never an issue with me.
I told my Dr. that I did not like the Armour which is why we decreased that. I actually wanted to go off it altogether but he thinks that little kick start in the am is good.
The problem I am having just not is that the Dr and I are communicating through messages I give to his nurses and he responds back through them. I have an appointment with him next month and he and I really need to have this discussion face to face.
I'm sure we will find the correct mix at some point I just felt crappy when I had the Hypo symptoms but would be willing to endure that if I thought it was worth whatever the next step might be. Just have no confidence of that now.
How does one go from feeling so good on meds to feeling so crappy on the same meds -logical point for me is less meds are probably better for me. I am whimpy with meds in general and I think it takes my body much longer to adjust.
Yes, but they're not really 'meds' in the accepted sense of the word, are they. They are hormones that your body needs to survive and can't make for itself any longer. And you need what you need - no more and no less. If you were feeling hypo symptoms, i really don't think that reducing your dose was the way to go.
If you don't like Armour - and some people don't - why don't you ask to try levo plus some T3. That would give you the boost you need in the morning.
So why did you have your thyroid out? Were you Hashi's?
I really think you need your vits and mins tested. If some of them are low, that is also going to make you feel crappy, and you won't be able to convert the T4 you are taking.
Sorry Grey Goose left out this answer. As to why I had my thyroids out.
I had thyroid goiters with follicular cells that continued to grow. This has been attributed and I agree to an autoimmune response by my body to combat the gluten intolerance. But perhaps only in part. My TSH always tested as normal as did T3 and T4 levels but I was still, I think symptomatic never feeling well.
I had known about these goiters for 8years prior to having them removed. My thought being I'd rather just keep them if they seem to be functioning than go through the adjusting to life without them process. In addition I had a very different life at that time and finding the time to take care of myself was very difficult.
So they continued to grow. I continued to need to have them monitored, biopsied etc, The timing was finally right so I finally just did it. In my life now it was more important to have that one less thing to worry about.
So glad I finally had them out as they had begun to grow scar tissue that had twined around parts of my throat. My surgeon says it was one of the worst cases he has seen(but then again you know surgeons do like to go on about things . So I may be thyroidless but at least I don't have a permanent breathing tube or something of that sort.
Yes, I see. If only the idiots knew how to treat people after they've taken their thyroids out! Well, it's good it wasn't cancer, anyway. So, what you've got to do now is find the right dose of the right replacement FOR YOU. And that is all trial and error, I'm afraid. But you'll know when you're there because you'll feel good. It isn't about numbers on a screen, it's about how you feel.
Totally agree with you one hundred percent Goose. I have seen B12 mentioned here in a few other threads and I seem to have better days when I take it. I don't have a good B-vitamin at this time. I live in a small town in a very rural state, both Drs. that I speak of are 60 miles away. Need to get a good supplement and have more tested than just T3 and T4 for certain. And yes it seems to be becoming clearer to me with what you just said that the problem may be that we have cut the only source or T3 I had while adding much more T4 that could certainly explain a lot. Levo with T3 sounds like it may be the ticket.
This has all helped so much. Everyone on this site is awesome. Such a great find for me.
Awesome article Shaws. Thyroid and Endocrine system seem so complicated I always feel like I get the general idea of how it works but not the whole picture. This makes it so accessible and easy to understand. What I gem I thank you so much.
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. So I may be thyroidless but at least I don't have a permanent breathing tube or something of that sort.
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