So, I had I did have my appointment yesterday May 1st and yay for me my doctor had no problem prescribing Armour thyroid. I am starting with 15mg the lowest dose, so we'll see how that goes. I'm hoping/praying that this will be the one that works because as of April 1 until yesterday's weighing I've gained 8 POUNDS--sheesh. I will have bloodwork by May 16th for TSH/T4. My calcium as of yesterdays labs was normal--it had been off.
Hi!
I've recently had a complete thyroidectomy (February 11, 2019) prescribed Levothyroxine 125 horrible side effects ensued, then 100 again horrible side effects (to include coughing again). Prescribed Synthroid 25 was doing fine side effect symptom wise but hypo, due to lab results on 4.16.19 increased to 50 and I've started to cough (sometimes with phlegm). I know it's the meds because I have never had this problem prior. I don't smoke, never have and I'm not on any other prescriptions.
Any other's with any side effect issues? Any resolve?
My numbers as of 4.16.19
TSH 76.330 (H) * Free T 40.4 (L) * Free T 31.4 (L)* (I'd started taking syn 25 on 04.01.19 and was on them 2 weeks when these labs were completed).
My numbers as of 04.01.19
TSH 81.610 (H) * Free T4 0.4 (L) * Free T 31.1 (L)* (I'd been off of the levo 125/100 when a few weeks when these tests were completed).
By the way, I'm in the US and I posted here because when researching this was the only site that seemed to have someone reference to having this issue, however, it was someone's parent and they were on multiple meds, had Alzheimer, thyroid, etc.
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ilovecruises
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you could have low stomach acid, which can be caused by low thyroid hormones, maybe you are not converting enough T4 to T3. I get a cough with phlegm when my reflux is bad.
Not sure. Anytime I've mentioned it to the endo they never said it's connected and since I've never been through this I don't know what's going on. I just know for sure that I've never had any reflux, stomach/acid issues, coughing etc. prior to having to take the meds. And the issue is it gets really bad, makes me tired and then I go between stopping the meds or trying to hang on but the problem is it's so tiring to the point I've had to take off work due to the side effects.
Is there something that can be done? I know for a fact my doctor will say my numbers are still off and I'm super hypo. I was really hoping that starting on the name brand as opposed to the generic as well as the lowered dose would help and it did until I had to increase to 50mcg.
Hi there, when did you have your TT? It is possible that the anesthesia tube irritated your airway and this would cause inflammation there and would induce cough with phlegm. You may wish to consider asking your doctor about a steroid inhaler such as budesonide for a short term as this will reduce any inflammation in the area.
As others have suggested, you might have acid reflux even if you never had it before. This is very common after general anaesthesia and the acid dies terrible things to your windpipe area.
I had a TT 9 weeks ago and although I did not have your symptoms, I had terrible reflux for about a week for which I was prescribed lanoprazole . It helped a lot and it was gone in a week. You may wish to ask your doctor about it.
Are you drinking lots of water? It really helps if you can manage 2.5 liters a day - it will clear out any leftover meds from the surgery and helps with cough etc.
Also, if you had your surgery recently, try sleeping upright or at an incline. I did that for about 10 days and it helped a lot.
I wish you all the best and sending you good wishes for your recovery. Feel better soon. TT isn’t easy - just hang in there. I’m still grappling myself with various issues, but am making progress and hope you will too.
My surgery was on February 11th. Funny thing is I was using budesonide but for a nasal rinse--had sinus surgery last year. The thing is I'm only having these issues when taking the meds. For example I had horrible side effects and as soon as I stopped taking the meds and they were out of my system I was completely fine (twice). My endocrine doctor at the time reduced the meds to 100mcg and again the side effects were even worse and I had to call teladoc and get pain/headache prescription and was off for several days. I tried explaining how horrible this was to the doctor but she wasn't hearing me as she was just concerned with leaving me on the same generic med levothyroxine and just decreasing the dose. I asked her how many times am I supposed to go through what I was going through and having to take off work before she'd try something different? Unfortunately, I am apparently part of the 1 or 2 percent in which this drug affects.
I then decided to see another endocrine doctor (on my third one and may lead to a fourth), she prescribed the name brand Synthroid and started me at a much lower dose 25mcg and instead of taking it on an empty stomach in the morning, she said it was fine that I take it at night and I was actually fine for a few weeks and thought finally perhaps this would be okay and then last week after getting my bloodwork results she told me to increase to 50mcg and then the coughing started and has gotten progressively worse. I don't want to keep taking it and for the symptoms to continue and again get progressively worse. I have an appointment on May 1st and I'm due to get my prescription refilled however I may just forego until I meet with her instead of paying for another prescription and then she may decide to change it to something else.
Thank you for your reply. Any information I can get at this point is helpful.
You and I had our TTs in the same week - so now I am thinking about something else to check out with respect to your cough. Bear with me on this story - it may seem irrelevant but I want to give you the reason for what I will tell you about the possible reason for your cough.
I developed hives after surgery when I received Synthroid within 72 hours. They disappeared more or less within a week or so. My dose has been changed 3 times in 9 weeks for a variety of reasons. Every time my dose was upped or lowered, I developed hives that subsided within 4-5 days each time. Finally, I was alternated on two different doses (50 and 75). - and my hives came back with a vengeance. I took matters into my own hands and figured out that the hives were not caused by the Synthroid but by my body's reaction to the change in dose. I put myself on 62.5 to avoid the zig zag (scoring a 25 in half) and hives have disappeared, and I noticed that now that my dose is stable, I am feeling much better - I'm not there yet, though.
Initially, everyone thought I was allergic to Synthroid! Interestingly, it had nothing to do with an allergy to the Synthroid itself as I have subsequently discovered - but another cause that I have investigated and spoken to with both my endocrinologist and allergist. Let me explain.
Were you diagnosed with an autoimmune disease like Graves or Hashimotos? I have Graves and had a huge multi nodular toxic goiter (yes, you still have it even after surgery but it can't attack the thyroid any longer) - and your body can still produces antibodies and thus causes responses to thyroxine. If your body is perceiving that the dose you are getting is too much because you still have high levels of antibodies regardless of the dose, the cough you have may be an immune response ("allergy") to the perception of thyroxine in your bloodstream. Were your antibodies tested for in your bloodwork post-surgery?
The other possible explanation given by my endocrinologist is that despite the very best surgeon (and I had a top surgeon who did a great job) - you could have a nanoparticle of thyroid left in your body. If you had an autoimmune disease, this could be triggering an allergic response (e.g., cough with phlegm, hives, etc) even though the thyroid is out. The only way to know is to get bloodwork testing for the antibodies for Graves/Hashimotos IF that was your problem.
Another person who answered you suggested your vocal cords - were they checked with the lighted probe after surgery? Do you have damage? This could also cause your cough with phlegm.
Even if none of the above is the case, and you do not have an autoimmune disease, (e.g, you had cancer or a large goiter that you needed removed) then I don't understand why any of your endocrinologists are not prescribing something else for you. There are other drugs that can supplement your needs (Tirosint, Cytomel, and natural thyroid) that are available in US - I live in Canada and we have the same ones here. My endocrinologist was prepared to give me something else during my next visit in May until I finally figured out what was happening by myself - it is really trial and error with the medications as I have discovered. The surgery for me, thankfully, was the easiest part of this process. I am not sure I will end up with the dose I am on or if I will remain on Synthroid - I will need to see how I feel over the next 3-4 weeks and also, how my bloodwork turns out when I go back to the doctor on May 13.
I really feel for you - I have had allergies all my life (chronic sinusitis from allergens and just the way my body works) and asthma as a child) and I know what it is like to have a productive cough with phlegm. It is horrible and really affects your quality of life. But sleeping upright can help with a wedge as I mentioned in my last post to you - that keeps the phlegm down a bit and calms the coughing.
Sorry for this long answer - but maybe it will help. In the meantime, please don't give up on your meds - if you can, try to find one dose you can tolerate until you sort things out. It is not a good idea to go without any meds post-TT. Other problems will develop because of the hypothyroid symptoms and you will feel even worse than you do now. I went online for my own information to see if there were any clinical trial articles on cough and Synthroid - and there is nothing - not even in the listed side effects of the drug from the company that manufactures it in the package insert. You may just need a different medication that suits your body better.
Thinking of you and sending you positive thoughts - you will get through this - gem making is right - and I am. hoping I will too - you just need to have help getting the right medication and dose. All the best to you.
So, no graves/hashimoto's , autoimmune, just an enlarged thyroid and the only reason I decided to have it removed is that it was starting to impact just being able to comb my hair and cutting off my breathing. For example even if I raised my arms above my head my voice would cut out completely and it also started to push my treachea, other than that I was completey fine, no symptoms of hypo/hyper etc.
Having a nanoparticle left is something to consider and will make a note to ask about. Another responder mentioned having low stomach acid could be the issue and because of that my body isn't absorbing the meds as it should. It doesn't sound like it. So of course I started researching and found this article that goes in depth about low stomach acid chriskresser.com/what-every...
I continued to research and did find that there is a connection with hypo/hashimoto's, while dealing with that it appears taking the meds exacerbates the issue because of absorption drbrighten.com/heartburn-hy...
I know that I am now super hypo so perhaps that's the issue. I will continue to advocate and try different meds, however, I can't afford really to keep taking them because the side effects are so bad I'm calling off work. Right now it's just the cough but when I was on the levothyroxine 125mcg/100mcg, I was dizzy, in pain, headaches everyday all day, jittery along with the coughing so yeah not able to function in general and especially at work. With the Synthroid at 25mcg I was fine however, because of the bloodwork still super hypo (without hypo symptoms) my endocrine told me to up it to 50mcg and then the cough started, some dizziness and periodic headaches but the cough is consistent, starts dry, then sometimes a yellowish phelgm, mostly a frothy clear/white phelm with feelings of heaviness and wanted to belch so yeah all kinds of good stuff. The only consisitency is when I stop taking them all of the side effects that occure when on the meds always stop as well so I'm going to stop them since I'll see her on May 1st.
But believe me, I'm taking all the notes you mentioned that seem like it would be related and as well as others and have them in hand. If needed I will change doctors again (I belive in being comfortable and having a doctor that treats the whole person not just the numbers and in this case only the TSH) and have a consult to see how their treatmenat plan is carried out.
Hi! I had TT 7/31/18- I had a cough as well after surgery and damaged vocal nerve. It eventually went away & my nerve fixed itself after doing speech therapy for a new months. Also, I did sit up with a wedge when I slept ( someone else said that too)
It so tough but we are going to get through it everyone! Positive positive positive #fuckcancer
I had mine removed due to enlargement, started to affect my swallowing, moving my trachea and I wish now that I would have left the left side alone and perhaps I may not have had to get on these meds or perhaps they wouldn't be affecting me as bad since I would have had some hormones left.
I never had an issues with the tubing or anesthesia or anything. However, started taking the meds and it's been downhill from there. I hope your cancer is gone or in remission not sure how it works with the thyroid.
It doesn't sound like it. Another responder that answered said that it cold be due to low stomach acid so of course I started researching and found this article that goes in depth about low stomach acid chriskresser.com/what-every....
I continued to research and did find that there is a connection with hypo/hashimoto's, while dealing with that it appears taking the meds exacerbates the issue because of absorption drbrighten.com/heartburn-hy....
It would seem to me if doctors k ow taking these meds can wreck havoc they would automatically treat the low stomach acid so when taking the medication you're not so symptomatic. I just want a doctor that isn't a one size fit all, to look at my symptoms and work from there first. I will ask my endocrinologist about all of these things but in the meantime I will not take these meds until I see her again May 1st. I did mix some ACV w/mother and ginger powder to see if that would help but it may not be as easy to know if it works without taking the meds to see if I still have the same reaction. I just wanted some relief and wanted it last night. Also, why I get super hypo when off the meds based on my bloodwork the symptoms of that does or hasn't appeared and I feel like myself again so that's another reason I wouldn't be able to give a true indication of if using the ACV works.
I will continue to update. I hope these articles help along with other's comments to get all of us some resolve.
Thank you for responding.
You are under medicated with a TSH that high after a TT Perhaps you require an increase in meds.
You can always self medicate with NDT which is natural pig thyroid, that's what I do and now feel well.
It does take time for your body to adjust, but you must have an increase in meds. After my TT I did find it hard to swallow and I had a cough for a few weeks too.
Hi Bunnyjean! I was prescribed Levothyroxine 125, 100, horrible side effects (to include coughing). Prescribed Synthroid 25 was doing fine symptom wise but hypo, increased to 50 and I've started to cough (sometimes with phlegm) and I'm sure the other symptoms will start to manifest.
I've had all of the following side effects since being prescribed the meds rapid or abnormal heartbeat, chest pain, difficulty catching your breath, headache, nervousness, sleeplessness, shaking, weight gain (probably that or bloating from my cycle, I haven't weighed myself). The only time I haven't had these symptoms is when I stopped the meds completely (after several days I feel fine) and when on the 25mcg. Even with the 25mcg there's some symptoms but tolerable. So, while I can agree the meds likely needs to be increased, the question is which because I'm not tolerating the current ones I've been on to the point I've had to call off work for several days and I can't afford to keep doing that.
I have no thyroid either and feel well on NDT I self medicate because the Levo did exactly the same with me. Before I had my thyroid removed I was not on any medication and knew nothing about the thyroid, it was a very steep learning curve. For the first 8 months on Levo felt so ill, then I joined this site and started having my own blood tests etc. The answers on here were to take NDT. It has taken me nearly three years to recover mainly because I knew nothing about dosage. I am now taking two grains per day split twice in the day. I know that it was the Levo because after a day of not taking any I started to feel more like my old self.
I have never had Hasimotos, gut, or any other health issues. I am 72 years old and now feel 85% of my old self.
That's the same with me. I've never had any of the issues I'm having now when on the meds or before I had my thyroid issues or had it out. All of this has happened over the last two years, so I was unaware as well.
I just want to find a med/dosage that I'll feel like myself and continue to be productive, work etc. I'm glad you've found something that helps. Do you still see a endocrinologist?
I had a very similar experience to yours back in 2014 I was walking up a very steep hill and all of a sudden I couldn't breathe. I was not on any medication and my TSH when done was OK too. I had a large growth on my thyroid that was moving my trachea to one side. After several months and getting nowhere in the UK I moved to France. The surgeon wanted to removed my thyroid and repair my trachea which was done a few months later.
I was put onto Levo for 8 months and became very ill, I then joined this site. When I visited my friend in the UK had a private blood test and requested on this site I then bought my own NDT and started with that instead of Levo. I am well on two grains per day.
I have visited Endos a few times but they just kept me ill, I now take complete charge of my own body and health and am nearly back to normal, walking, Yoga, etc.etc. I like you have no other health issues, no Hashis, no gut problems, nothing and I am 72 years old.
I just think that your cough is related to the operation it does take time.
Why not have your B12, folate, ferritin and Vitamin D tested too. I take some supplements Vitamin C can help with your healing. Try Armour NDT you can get this in the US. Good Luck
I'd agree that the cough would be due to the surgery however, it doesn't present until I'm on the meds. I'm on Vitamin D but even before the thyroid issue that's been sporadically low. I've not had the B12, folate or ferritin checked (my first time hearing of those needing to be tested via your mention).
I have been hearing a lot about the NDT. How long did it take for you to figure out the dosage for you and how often do you get bloodwork and do you now only get private testing?
Hi, yes I never visit the GP but instead have a private blood test once a year, twice to start off with. I use Medichecks ultravit this one gives you everything you need.
I always order the nurse to come to the house and take the blood but you can do a finger prick test yourself. Take the test first thing, fasting and leave off Levo for 24 hours prior to the test. Post the results on here include the ranges.
I had mine TT in Oct 2015 and was on Levo for 8 months and although I have no other health issues the Levo made me very ill. I then joined this site in June 2016.
I knew nothing about the thyroid then. It has taken me a couple of years to sort out my correct dosage on NDT, but now I have there is no looking back and I feel good.
I'm super happy you're feeling better! Being super sick myself, it's my goal to do the same. I'm seeing my endo doctor today and I have information reagarding NDT and giving it a try so let's hope she's accomodating.
I've been off the Synthroid since April 25th. My cough is still lingering but it always takes several days or so after I stop taking the meds for it to clear completely up. But other than that I feel completely fine like I'm used to feeling as opposed to how I felt on Levo and feel on Synthoid.
Keep letting us know how you are feeling. Post your vitamins and minerals results when you have them for answers too.
By the way and on a lighter note ( I hate cruises) back in the seventies I worked for Cunard, so off all over the world now I love to stay closer to home and leave the cruising to my friends.
I will. As a matter of fact I'm going to update today and add the edit on the top portion of my original post. I may also start a new post same title adding update but I'm still figuring that out. But so you don't have to look at the original, I did have my appointment yesterday and yay for me my doctor had no problem prescribing Armour thyroid. I am starting with 15mg the lowest dose, so we'll see how that goes. I'm hoping/praying that this will be the one that works because as of April 1 until yesterday's weighing I've gained 8 POUNDS--sheesh.
Awe, not hate cruises-LOL. Yes, we quite enjoy them and planning our family vacation cruise for end of July!!!!!!
Good for you I hope that the Armour works well for you. Have a lovely time cruising too.
Hi, ilovecruises, I had TT 14 years ago for a benign multiodular goitre and never got well on levothyroxine. I know there is just ONE thing that matters more than anything else after you have had a total thyroidectomy and that is that you shoud NOT take levothyroxine at all. You MUST take NDT or you will remain ill for the rest of your life.
I was ill for 8 years on levothyroxine, I started taking NDT and much of my long lost health returned more or less straight away. Unfortunately the well being of my body has been compromised for so long that I will probably never return to the really good health I had prior to 2005.
I suggest you read the following VERY informative article which demonstrates that every athyreotic patient MUST take NDT after a TT in order to feel well, then look up this article:
May I ask since it took so long for you to find something that worked what are the remaining issues you're still having? Did your endo or PCP doctor prescribe NDT for you? I've researched and read that a great deal of doctors is resistent to giving anything other than their one size fits all levothyroine/synthroid meds. I am a self advocate so I'll keep consulting until I find a doctor that will work with and not against me.
Thank you for the article and I will definitely read it and have it in hand when I see my endo on May 1st. I'm appreciative all of the information I can get especially since I seem to be of the lower percentage of people who can't tolerate these meds generic or brand name. I have friends who can tolerate it but I can't and I have no intention of trying to just survive on it and being sick or feeling poorly.
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