I had a Thyroidectomy on March 29 of this year. Since taking levothyroxine (about 3 weeks after starting it) I've developed SEVERE Angina. I am going to my doctor on wed. Previously, I went to my cardiologist who found nothing wrong (not suspecting the medication). He prescribed a Calcium Channel blocker. I feel terrible. The pain is much duller, but still there, and I feel lethargic. Do all meds cause this? Can I switch to something else? Armour? Can someone please share if this happened to them? THANK YOU FOR LISTENING!!!
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DJ3271
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I developed chest pain and tachycardia (fast heart rate) but cardiologists never found a problem. I found and fixed the problem myself in the end, although the tachycardia can still cause problems intermittently. I haven't had chest pain for quite a long time. In my case the pain was caused by low iron and ferritin.
Note that people can suffer from iron deficiency with or without anemia. But iron deficiency needs treating, with or without the issue of anemia.
Hi ,I did develop that 2 weeks after having a thyroidectomy. However, I was not put on medication as I was told that once the thyroid was removed I was healed. What I have experienced three years later is worse that Graves disease. Mine was due to Levothyroxine. You could request for a change of brand. I believe it would be best to continue to be monitored by an endo following a thyroidectomy for at least a year. When I insisted on having an appointment with the endo he told me, he is not a psychologist and asked my doctor to put me on antidepressants. Also, he put on my records that I have a depressive disorder. I wish you the best. Please do your own home work as it is a long life journey ahead.
At the time I first developed chest pain (roughly 2011/2012) I wasn't on Levo, but was prescribed it during the time I had the chest pain. I discovered with experimentation that I couldn't tolerate Levo at all at that time, nor did I get on well with NDT at all.
Eventually I spent a few years on T3 only. I made occasional attempts to try Levo and NDT but nothing really changed. During that time I was trying to get as many nutrients at good levels as possible. It took a long time with iron and ferritin (iron stores) because I don't absorb iron very well. My iron/ferritin results are a lot better now than they used to be but still aren't optimal - I've never managed to get all of them optimal at the same time.
(I haven't had a return of the chest pain since about 2015/2016.)
It was 2020 when I last tried T4 and discovered that, for the first time, I actually tolerated it. I stayed on T4 (Levo) for quite a while but still felt unwell. I added some T3 to my dose which helped. I've been experimenting with my dose of both T4 and T3 ever since.
Another thing I did that helped a lot was reducing my cortisol, which was very high (over the range) when first tested nearly 10 years ago with a saliva cortisol test.
I was forced to stop taking iron last year when I developed Anemia of Chronic Disease for some unknown reason (which presents with low iron and high ferritin).
I only know your heart needs a regular supply of T3 so it's essential to know whether your levo (T4) is converting to FT3. Whether the T4 which does not convert turns entirely into Reverse T3 I don't know. Some people take liothyronine (T3) specifically to avoid the issue of conversion.
You are welcome, but there are so many complexities about the condition and most doctors are unwilling or not permitted to go beyond a certain point. This is disastrous for some. It's unfortunate YOU have to do the research. Some find a combination works best. This thread might give you an idea. healthunlocked.com/thyroidu... best wishes!
Thank you so much. I need to get this fine-tuned. This site is such an amazing wealth of resources. I welcome the day I am well and can give such sage advise to others!
Good! You will do it. I'm in the U.S. but find the same resistance to helping patients find the right road. I wonder why that is????? Keep learning! I'm in good shape even at an advanced age.
Thank you Heloise! I am in the US as well! I am just trying to get some normalcy back into my life. This chest pain is undoubtedly related to the levothyroxine. It is just daunting that there is minimal options. I need to stay out of this funk and be positive.
I've been here for almost a decade and became hypothyroid more than two decades ago and had plenty of setbacks but have listened to hundreds of interviews and reads at least a thousand articles. I already do not like what your doctor has done, not that I know that much about pharmaceuticals and my opinion isn't worth a lot, but I believe your dosage should have become optimized before you try a drug which sometime interfere with the body's natural abilities. I think John Bergman's videos on You Tube explain so much of what doctors attempt to manipulate rather than support what thyroid hormones can do. Functional doctors use supplements that tend to work with your body. I won't go into iron supplementation.
I don't know the reason for your surgery but since your body was used to having T4 and T3, etc. it had to do more converting when only on T4 and no T3 but still a very low dose should have been ramped up since March. Common dose for NDT is two grains. For T4 is 125 and 40 to 50 mcgs of T3 may be equal to both of them. If you have resistance, it could take larger doses.
I have to leave now but if you want to send a private message, feel free.
hi, sorry to hear this, it sounds like your dose is too high as a starter dose - it's best to start small and increase incrementally over months, what dose did they start you with? Also, what humanbean says below is important - was everything else checked?
OMG! I was hoping that was it! My endo increased it over the phone with me and I feel worse. I did not take it last night, and cut it in half and took it this morning. I did not get woken up with chest pain... But what is the alternative? Lower dosing? What about the Armour?
For everyone? It doesn't matter if that sends your TSH really high after a thyroidectomy? I am curious as I was started at 112 mcg and my TSH went to 29 with that dose. Again simply curious cazlooks . .
Hi DJ, since you are in the US I would strongly encourage you to pursue the possibility of Armour Thyroid - since it is more easily accessible in the US. I had my thyroidectomy in California and for the first 2 - 3 months I had T3 only and I felt great. I then was put on Levo and went through the Levo nightmare for about three years until I had to educate myself in things biological (not at all my subject!). If I hadn't done that I think I would have died. I finally settled on Armour after years of experimenting and being knocked down by the Endo whenever I made some progress - there was always a reason (usually, "Oh your TSH is far too low!" ) why I could continue on the dose of Levo which made me feel well.
So that would be my advice, go for Armour. Now, you will have to find a doctor who will prescribe it, I got through about 6 before I hit the jackpot. Just keep trying. As soon as they start giving you a reason as to why you can't do Armour, just close down and go get another doctor. If it takes you too long, call the manufacturer and ask where there is a doctor who prescribes Armour - you might have to travel a long way but do it, it's worth it. I have a 400 mile round trip for mine but I go to a nice restaurant at the far end, makes it fun.
Well, this is going back a bit but the main effect was complete lethargy, no energy to do anything - including thinking. The feeling that I would collapse if I spent another minute standing up. I just didn't want to get out of bed in the morning. I remember that I was doing landscape design at the time, I would pick up the crew, drop them off at the site and then leave to pick up materials. I would drive to a quiet spot, sleep for a few minutes then drive to the supplier. I would have to rest for another 5 minutes before I went into the supplier, I couldn't spend more that 10 minutes gathering supplies before I felt like I would collapse. I would then return to site reversing the routine. Working was terrible, the crew thought I was being lazy, I was not, I could just hardly move around and couldn't think straight. I was really desperate and my Endo said that I must have a different medical problem so to go work it out with my GP. NO, she was wrong, she wouldn't allow me to take a large enough dose of Levo that would generate enough T3 to enable me to function. And that's when I started reading for my life!You HAVE to get, take or generate T3. I am now perfectly normal and have been for about 15 years, I am even still riding my bike about every other day - full honesty, I did have a knee problem so that cramped my style a bit, I wore out my cartilage. But I am up at 7:00am, go to bed about 10:00pm and fully occupy my days with design work or my own, rather large garden. I attribute my energy to Armour completely since it runs out about 10:00pm when I really have to sleep. Well I guess the T4 is still hanging around but once that T3 is used up, I conk out.
OMG. This is AMAZING INFO! After I work out, I am done for the day. Plus the chest pains!! I am going to try to get the Armour. Does the Armour give you the T3? What about the T4? I am so sorry! I am so new to this, I know nothing!!!
No, my insurance does not cover it. I am covered for the doctor's visits but not this particular medication - because I am in an HMO. Armour costs me $50 per month and I gave up about 2 bottles of wine a month to cover the cost - I live in the wine country so that was quite a concession. But... if you can just get the prescription you can enrol in "Good Rx" or "Simple Care" or something like that and get it amazingly cheaper. That is my next move but I don't know if HMO's give you prescriptions that you can take elsewhere other than their pharmacy, but I will give it a try. Also take the advice that others here have given and get your T4, T3, TSH etc measured so that you know where you are with everything. After a while when you are stable and well you don't have to keep doing that because they are usually very similar. I use "True Health Labs" for that. The testing is a bit expensive to begin with, but, as I said, after a while you are stable and your readings are all similar.
I can't thank you enough! Please wish me luck trying to get the prescription. Jealous you are in wine country! I am in the NYC/NJ metro area, but I may have a good chance at getting a dr to prescribe to me. I'll see what my endo says wednesday.
Good question. I did not know very much about the thyroid at that point, I was trusting my endocrinologist. I did, in fact, reach a dose of levothyroxine which generated sufficient T3 that I felt normal but my Endo told me that my TSH was too low and that I must reduce my dose. She told me that a very low TSH could cause osteoporosis and heart problems so I was scared and followed her advice. My TSH has been almost imperceptible for 15 years now and I do not have osteoporosis nor heart problems. After reducing my Levo dose and plunging back into hypothyroidism again I began desperately reading and studying and concluded that Armour Thyroid would provide the T3 (as well as the T4) that I needed. Whether or not the old high dose of Levo (~150mcg) would have been sufficient I have often wondered but I just do not want to go back into that nightmare again not even for a brief experiment.
Thank you for explaining, it is very helpful for me. I am just newly out of a thyroidectomy, and the medication changes have been very difficult. So I appreciate it greatly.
If you are just newly out of a thyroidectomy you should be on T3 only for a couple of months (maybe 3). Then introduce T4 in whatever source keeps you well.
Thank you for your insight LAH. I appreciate it. My endocrinologist does not prescribe t3, in any circumstance. She has no one under her care on it - I have asked directly if she has any patients on it. I am approximately two and a half months out - it was a successful surgery but the medication has been quite difficult for me..
That's a shame. Look, I cannot remember all of the details but usually after removing the thyroid (via a TT) if the surrounding membranes only get T4 then it tries to regenerate thyroid cells in order to generate T3 (their job). These thyroid cells are now growing in an environment where they could encounter a few molecules of the cancer which may not have been removed and so present another problem. For this reason it is a good idea to starve the area of T4 and only give T3 for a while so that regeneration of thyroid cells is inhibited.Now, it has been sometime since my TT but that is how I remember it.
I told my doctor I need a tattoo in case I ever go into hospital to say ‘My TSH is ALWAYS LOW (and has been for 20+ years) but T4 and T3 just fine thanks!’ He said there should be enough on your notes ...hah!
it could be that you were started too high and your body is finding it difficult to adjust, normally there's an assessment every 3 months as this is how long it takes to settle. cx
The calculation for your weight is around 81 mcg. So even your first.dose.was too high. Palpitations are a sign of being over-medicated. And when my endo was putting my Synthroid way up, she wanted me to call in immediately if I experienced them.
I'm sorting myself out because GPs and NHS endocrinologists just aren't good at this. But I ended up in a position, using a small amount of Levo and quite a lot of T3 through a private endo. However I was just feeling worse and worse. Suddenly I had an epiphany. And rather than increase my T3 further, I reduced it and wow! The difference it made. I am now taking 50 Levo and 40 T3 a day, down from 55 T3 and feel very much better.
Too much is just as bad as not enough and for me the symptoms were identical. The endo had rushed me through T3 increases too fast and I had remained on too much Levo and so between us we had made me worse. I'm thinking I might need to reduce that T3 a bit further soon. But I'm letting things settle for a while first.
I would have been lost to all this if I hadn't read everything I could get my hands on about hypothyroidism, it's diagnosis and treatments. Books, papers and web sites. This forum and the thyroidpatients.ca are full of vital information. I credit thyroidpatients.ca for my finally getting an idea of what has been going on with me. But it's a technically written site and needs a basic understanding first. For a good primer I recommend Dr Barry Durrant-Peatfield's book, Your Thyroid and How to Keep it Healthy. smile.amazon.co.uk/Your-Thy...
Today can be the first day to learning all you need to know to live with a thyroid condition.
Ugh. My endo won't prescribe the Armour. This was her response. I also asked to have to dosage decreased:
I'll prescribe the synthroid but I can't decrease the dose. We need your TSH to be between 0.5-2 to prevent recurrence of the thyroid cancer. Your TSH was above 2 when you were on 100mcg daily, so 88mcg will not be enough. I believe you are due for repeat lab work shortly, if your TSH is less than 0.5 on this blood work then we will work to find a dose somewhere between 100-112.Best,
I had bouts of angina in my 30’s but they stopped as mysteriously as they appeared. They started up again in my 40s and this time I sought medical advice. Much to my consternation, my ecg was abnormal so I was sent for an exercise stress test. I was told one chamber in the heart was not working properly but it was just something “women of my age get” and of no consequence. The pains just kept on plaguing me but I thought it was not important because of what that idiot consultant at John Ratcliffe hospital said.
10 years later the angina was now persistent and frequently present. I felt dreadful in so many ways but had been told it was just the menopause but the menopause ended and I still feel terrible. I had mentioned many times about thyroid disorder in the family and could it be that? But I was repeatedly gaslighted and was too ill by then to be able to fight my corner just getting to the next second sapped all my energy. Eventually I decided it was now or never I went to the doctors and determined I was no moving out if that surgery until they did a thyroid function test. Thank goodness this doctor listened and did one - it came back hyperthyroid so they tested again and the TSH had shot up to over 100. I was started on Levothyroxine but a very low dose for far too long. It did save my life (ultrasound revealed the gland had completely atrophied and was highly unlikely to have any function). The angina persisted and became worse than ever even after the Levothyroxine dose was increased to something reasonable. No one seemed in the slightest bit bothered about it or that I still felt very unwell even with a TSH under 0.5. I suffered it for two years and eventually found out there were things other than Levothyroxine you could take. I was pretty annoyed I had not been told about other options.
In the end I tried self medicating with NDT. I had immediate improvements in every way. The angina lessened and eventually it went away. I think I was suffering from lack of T3 because I do not convert T4 to T3 very well and without any thyroid function I no longer make any and I couldn’t convert enough Levothyroxine into T3. I was diagnosed with atropic autoimmune thyroiditis (no goitre) it starts out like graves disease and ends up with hypothyroidism. But it comes in fits and starts. Adequate T3 is very important for correct cardiac function also any vacillation in levels can upset things. I was always very thin and had mixed hypo/hyper symptoms and I never never had a goitre. I have heterozygous for DIO2 for poor T4 to T3 conversion and genes for thyroid hormone resistance. I have a genetic predisposition for Graves disease but not Hashimotos. All my relatives taking Levothyroxine have been absolutely fine on it. I went gluten free and felt better for it
I hope my history may be of value in understanding your own situation. I would be suspicious of free T3 levels that are not optimal for you. They should be in the top third of the range. I would get them tested.
Getting T3 prescribed is a real battle but some here do manage it. The only other option is to take enough Levothyroxine to get the free t3 levels good but it never worked for me as the conversion can be affected by other things as T4 rises. I have stuck with NDT, it works, I would be denied T3 on the NHS because I am not homogenous for DIO2 just heterogenous. It’s ridiculous surely they ought to be aiming to get us well again by whatever means that works.
Hi,Thank you for sharing. Forgive my ignorance and confusion. The NDT does not contain T3? That would have to be prescribed seperately? I appreciate help. I am grasping as straws here.
It contains T4, T3, T2, T1 and calcitonin. It is basically what our thyroid produces in health, but it is usually obtained from pigs. Some claim it’s in the wrong proportions but the thyroid is dynamic and can greatly vary the proportion of T4 and T3 it produces and some human individuals do have similar proportions to what pigs produce. I believe the body is able to take what it needs and get rid of any excess but one needs to be on an optimal dose for that fine tuning to be working correctly.
It was thought the T2 did nothing and was just a breakdown product of T3 but recent research indicates it is important in mitochondrial activity and seems to help with maintaining a healthy weight. It’s not known if the amounts found in NDT have any effect but it could account for why those on NDT tend to have fewer problems with weight gain. The T1 has no known effect and is thought to be the breakdown product of T2 (the numbers refer to iodine molecules that are removed in the deiodination process T4 is inactive so kind of waiting in the wings ready to be called upon, but once an iodine is removed so it becomes T3 and is now active and useable by the body, and so it goes on down to T1. I think the iodine is then recycled in the liver but don’t quote me on that). The jury is out on whether the calcitonin in NDT can even be absorbed or if it has any effect. I take mine sublingually just in case. Stomach acid is supposed to destroy it. But some say the molecules are too big to pass through the bucal mucosa. I can’t find anything definitive about if it goes in or not.
So that’s NDT in a nutshell. I feel it’s as close as we can get to what our thyroid once made to keep us well, so is the most likely thyroid hormone therapy to restore health. It doesn’t suit everyone but I have found it highly restorative. I feel much better on NDT than I did for decades with undiagnosed thyroid disorder or ever felt on Levothyroxine.
Dosing NDT correctly is important I’ll post a good guide to getting the dose tweaked and optimised for your reference and should you decide to try it . Too much too soon is not a good idea although in theory a full replacement dose should he fine I had to build up gradually.
Hope that helps explain a bit about NDT and what’s in it.
Here’s the guide to dosing with it, as promised, there’s some very useful information given here:
I can't thank you enough! I think this is the route for me. I cut the levo in half 2 days ago and my heart already feels better. My endo won't prescribe it, so I may have to go the other route of obtaining on my own.
I started on 1/4 grain and removed 25mcg levo Then went up gradually (as described the the thyroid patients adocacy guide I posted above which advises on how long to wait between dose increases and how to assess when you are at the right dose) adding 1/4 grain and removing 25mcg Levothyroxine I had to take 1/4 grain am and 1/4 grain pm or I felt weird and kept on splitting the dose I carried on like this. Once I got to 1.25 grains and no Levothyroxine I felt completely well again with no symptoms and I stopped there. I was on 125mcg Levothyroxine before that. I’d advise reducing levo by 25mcg and increasing NDT by 1/4 grain to cushion the change and to go slowly, rather than just stopping levo completely, in theory it should be ok but I found the way I did it worked well for me. Sone just take stop levo and take a full dose of NDT and are fine but others feel weird probably because a big wallop of T3 is too much to cope with.
Now I need quite a bit more NDT but still only 2 grains & I can take it in one go. It’s been 8 years since I started taking it.
Everyone, I've been on the Armour for almost 3 weeks. I am still having the angina. I am on calcium channel blockers. I am going to the Cleveland Clinic on Aug 16. I am praying they get to the bottom of this. I think the high doses of Levo that I started with is not reversing.
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