So, not really a clickbait title. I am at the point where I actually feel like I'm going to die. My heart palpitations are so bad, I can't walk more than 50 yards, I sit all day, morning to night on the couch, I am utterly exhausted, with flu-like fatigue, eye stiffness and swelling, etc.
I started Eltroxin about 3 years ago, did a short stint on Armor, and now I'm back on Eltroxin.
Before I started medication I was functioning - I could do stuff - exercise, walk, cycle even, socialise, etc. but would need lots of rest afterwards. It was bad, but since starting medication I have only gotten worse - much worse.
I am on 25mcg of Eltroxin, and up until 2 weeks ago I was on 20mcg of Liothyronine (Thybon), but as of 2 weeks ago I'm on 30, so not sure if that will have any effect.
The main problem between me and my doctors is the Eltroxin - The conversation goes something like this (G.P. and Endocrinologist):
Me: "I feel far worse since starting Eltroxin, and have heart palpitations that I never had before starting it".
Doc: "Take more Eltroxin"
Me: "But when I take more I get awful heart palpitations, fatigue, brain fog, diarrhoea, goitre, eye swelling..."
Doc: "Symptoms might be unrelated to the medication and just a result of your low thyroid or you need an adjustment period"
Me: "But I have been on higher doses for several months and negative symptoms never went away"
Doc: "Take more Eltroxin"
Me: *Doesn't take Eltroxin because it makes me feel absolutely horrendous*
Doc: *Writes something about patient being resistant to treatment or something*
So... now I don't know what to do. I want to come off the Eltroxin, but I am fully aware of how hypothyroid I am and that I need hormone. Could just be a brand thing but GP and Endo have no solutions whatsoever and haven't seen me in nigh on a year.
I have found a decent Functional Medicine practitioner, and he is very helpful and listens, and has me on the increased dose of T3, LDN, supplements, and is seeing how I feel over time and is open to discussing other brands of T4, but it's slow progress.
My stats (I'm diagnosed Hashimoto's btw):
T4: 43 Range: 59-154
Free T3: 5 Range: 3.1-6.8
TSH: 44.4 Range: 0.27 - 4.2 (this is down, it has been in the hundreds previously - 200, 300, etc.)
Thy. Perox. Antibodies: 299 Range: 0-34
Help?
Thanks.
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ronzo888
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From your previous post you require lactose free T3. Might it be an idea to make your Levo lactose free too? There are few lactose free tablets available, many of us take liquid Levo but it's in very short supply at the moment. Your GP might also be resistant to prescribing the liquid as it's very expensive in comparison to the tablets.
Other than the fact you're clearly on too low a dose, the reason some people struggle getting onto thyroid replacement is due to low vitamin levels. Raising those levels makes you feel better and helps tolerate the Levo.
Has your GP checked your levels of ferritin, folate, B12 and D3 at all? If they have post the results here with their ranges. If not ask them to.
I'm sorry you're in such a bad way but keep asking questions, keep learning and you will get there.
Thanks for your reply, let me reply to your questions:
1. Would lactose have a major impact on symptoms? I was getting some sinus issues from the previous t3 before I switched, but I didn't imagine it would really impact thyroid symptoms? I'll mention it to my functional doctor anyway.
2. Yeah I'm definitely on too low a dose, objectively, but I can't tolerate it so that's why I'm between a rock and a hard place...
3. I've had my B12, D3, and everything else checked - everything is fine, totally in range. I take vit-d3, B12, C, selenium, zinc and others.
1. If you're intolerant to lactose then it can make you feel ill and strange symptoms. Some people do better on different brand tablets, it's not a one size fits all thing. Are you in the UK?
2. What makes you say you can't tolerate the tablets? What are the symptoms?
3. Having vitamin levels within range is totally not good enough. They need to be what's called OPTIMAL, which is certainly 50%+ of the range and sometimes higher nearer 3/4 at the top of the range. If they are not OPTIMAL then thyroid hormone intolerance can happen, also you cannot use the replacement hormone properly.
I'm in Ireland. Ok that's interesting. Yeah like I said in the post I'm considering the possibility it could be a brand thing. My doctor did say we could discuss other brand after I try the higher dose of T3 and am on LDN for a while. So maybe next appointment.
The symptoms I have when I up the tablets: Really bad heart palpitations, bad diarrhoea, eye stiffness/swelling, goitre, bad brain fog and confusion, and the worse thing is the exhaustion.
I'll have another look at my vitamin levels, but as far as I remember they were in a good range last time. I'll see if I can find a recent blood result and put the results into this post. My doctor did mention that some people have trouble "converting" t4, and that could be me. So, I don't know what that means but he said it was possible.
Have you tried splitting both the levo and T3 doses? You won't ned to do that with Levo at least once you get to where you need to be but it might help now when your system is so downregulated.
I'll tell you a story which I'll try and keep short. Many years ago I was on Levo, wanted to switch to natural thyroid hormones. Stopped my Levo for a few weeks and pretty much ended up like you are now. It was absolutely hell on earth getting back onto the Levo but I did at least know that I'd never had issues with it before I (very stupidly, don't try this at home) stopped taking it. I was getting all the symptoms you mentioned and more. Splitting the dose helped a lot, then I just had to wait it out for a few weeks for everything to settle down. How long have you tried each dose increase for?
I used to split my Levo in half but now I just take it once. I've been on Eltroxin for over 3 years now, though, and no change. When I was on 50 I was on it for months, I couldn't say exactly how many months but I'd guess at around 3-4, got no better, just felt worse, then I went up to 75, felt absolutely horrific, came back to 50 for a while, still felt bad and so went back to 25.
If I had my time again, (and with the benefit of hindsight) when I was in hell on earth, it might have made a difference meds being lactose free (wasn't at the time).
Next would be to go gluten, and dairy free (I also need to be soy free too). I didn't do that until some years later but it makes a difference.
Then getting vitamin stats (still laughing at that lol) to optimal. For sure I was low ferritin at the time - less than 75, probably low vit D and likely low folate. All these years later I'm only just getting around to that part and it's helping.
No need to worry about converting for now. Your doctor seems to have an understanding, you're already taking T3 and it's a detail that can be dealt with much later on.
Hi I had all your symptoms and I was being over treated and became allergic to my tablets. A private endo wrote to my doctor to give me liquid thyroxine which is much better x
I was previously upped to 50, then 75mcg of Eltroxin but it was horrific (not exaggerating), got the doc to bring me back down to 50, still felt awful, back to 25 and felt tolerable for a while.
I'll look into the lactose free t4 - as I asked the other commenter, would that impact symptoms?
Vit D and B12 are normal, iron levels I'm not 100% sure but I think were normal but I will check back my past bloods and edit this if not.
I have never had a coeliac test however I am on a 100% gluten free diet. The reason being that I stopped years ago and don't want to start gluten again in order to have the biopsy test. So I just stay off it.
I weigh around 70kg, slightly under. That would equal over 100mcg Eltroxin, which is probably normal for other people but would probably kill me. The heart palpitations when I go up an extra 25 are bad enough as it is.
With the T3 I was on 10 for a long time, then upped to 20 by going to 15 for a week, then up to 20. Then I upped to 30 more recently by going to 25 for about 2 weeks, then 30. So it was gradual.
With the T3, I actually split it into 6 doses per day - 30/6 so 5mcg at a time (might be excessive and I will probably reduce it to 3 times a day in the future but I just did it because I wanted a smooth dose for my heart palpitations).
I'll be getting tested again in a couple of weeks, but feel no better.
I think I felt slightly better when I increased the T3, but then I just go back to feeling crap after about a week on the new dose.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
With the T3 I was on 10 for a long time, then upped to 20 by going to 15 for a week, then up to 20. Then I upped to 30 more recently by going to 25 for about 2 weeks, then 30. So it was gradual.
Sorry but those increases were not gradual!
It takes around 6 weeks for an increase - usually 5mcg - to settle into the system. There is no quick fix....like headache/paracetamol
Increasing quickly confuses the body and makes it possible that you miss your sweet spot.
Suggest you slow down and first optimise essential nutrients as SlowDragon has advised.
Your T3 intake is pushing up your FT3 while lowering your FT4
It is just possible that because the T4 dose is so low the body is calling out for more by the way of the symptoms you experienced.....undermedication can feel like overmedication. Doesn't make life easy!!
Your GP may just be correct!
I suspect you need to reduce your T3 down from 30mcg and raise your T4, as well as optimising the nutrients. Only change one thing at a time , I suggest you start by reducing T3 to 25mcg. Wait about 2 weeks and increase T4 to 50mcg....hold that for 6 weeks
You may not feel great but it's a work in progress
Your system is in a state of confusion after rapid dose changes so you need to be on a stable dose for at least 6 weeks then retest.
The results will point the way forward....post them for advice.
I see what you're saying, but the thing is I increased my t4 to 50mcg for several months, and felt worse, rather than better - not just for a while, and then felt better - I never settled into it and just felt continually worse.
Vit D and B12 are normal, iron levels I'm not 100% sure but I think were normal but I will check back my past bloods and edit this if not.
“Normal” can be very very far away from “optimal”.
By way of example, the “normal” range for ferritin is something like 15 to 300.
People who have a ferritin level of 30 are told that’s normal. It absolutely isn’t. A level that low has you just about compatible with life… but it’s nowhere near enough to fulfil important bodily functions, like maintaining a decent rate of renewal of red blood cells or doing a good job of converting T4 to the active thyroid hormone T3.
Similarly, the bottom of the reference range for serum B12 is about 180. A B12 result of 200 will likely result in significant symptoms of B12 deficiency—pins and needles, strange aches and pains, dizziness etc.
It’s bizarre, but many doctors don’t seem to realise that blood test ranges are a guide rather than a goal.
If you do have the actual results, plus laboratory reference ranges, it would be interesting to see them.
Ok that's good to know, thanks. I think I did get them tested within the past year, so I'll see if I can root out the results and I'll reply to this comment with them if I do!
Palpitations may be caused by low serum iron and/or low ferritin (iron stores). Doctors will measure ferritin sometimes, but will very rarely measure serum iron.
Note that iron can be low while ferritin is high or vice versa.
I am on 25mcg of Eltroxin, and up until 2 weeks ago I was on 20mcg of Liothyronine (Thybon), but as of 2 weeks ago I'm on 30, so not sure if that will have any effect.
You increased your T3 dose by 10 mcg in one go? That could definitely be having an effect on how you feel. It's too much in one go.
No, I increased it by 5mcg, waited two weeks, then 5 more. The increase in T3 doesn't seem to affected me negatively, I feel the same before and after the increase, more or less.
Interesting, I thought 30mcg was a good dose. Maybe I do need more. That said, the palpitations began when I started the Eltroxin - I didn't have them before, so I don't know. My doctor did say when I was on 30 for another while he might put me up to 40, so well see.
if your taking 100mcg and your t3 is low you’re not converting t4 to t3 very well. Taking more elroxin will make you feel worse. T3 will only last 6hrs or so, so once that is used up you’ll need more hence I take 20mcg every 6hrs or so.
I'm so sorry to hear all that you are going through and can empathize. I couldn't take any thyroid meds even starting at the lowest doses. Tried and tried then I threw in the towel. Turns out I had hyperparathyroidism that was responsible for my symptoms that were the same. My thyroid issues are subclinical. Having surgery for the parathyroid mass was the solution, After that I was diagnosed with sleep apnea after a home sleep study. Getting those two under control changed my life. I'm still subclinical thyroid but it doesn't seem to be a problem. I also changed my diet. And also tested for selenium, now eat 3 brazil nuts a day. Tested for iodine and one other thing related to thyroid I can't remember. l am sharing all this to offer the idea that maybe you are ALSO suffering from something in addition that hasn't been found yet because of the extreme difficulties you are having. I hope you find some answers soon. I clearly remember that feeling of sitting on sofa exhausted and two times literally felt like the life force was draining out of me and that I was dying. Don't give up. Keep digging as you have the energy and spirit! Best to you, Barbara
Thank you so much Barbara, I needed this! Gives me hope.
I did have an ultrasound of my thyroid at one point - I didn't hear back with any results so they must have been clear. But yeah I definitely think that I have something else going on rather than simple hashimoto's because if it was just that you'd think the medication would fix it? I'll keep pushing with my new doctor and look at other avenues with him, maybe we can find the root cause.
Just to be clear - thyroid is not the same as parathyroid! If you had an ultrasound of your thyroid, it does not tell you anything about your parathyroid. We have 4 parathyroid glands hiding behind the thyroid. If you want to learn more, the surgeon who took my mass out has an encyclopedic site: parathyroid.com You can also download their app that helps you track the variables to give you input. My app was really helpful and once I put in stats, I made a call to them immediately for a consult., Four weeks later, I was at their hospital getting the darned thing out. Our calcium levels are different by age but our labs don't distinguish that so they show you the ranges calcium should be for your age. Now you would think that your doctor would know this right? Vitamin D is also important. When my surgeon took out the noncancerous mass that was sucking the calcium out of my bones and leaving me exhausted and in pain he said that judging by the size of it I had had this for 6 to 10 years!! My calcium level was high for my age on my labs and my doctor said NOTHING about it! GRR. We definitely have to be our own detective and thanks to reputable sites on the Internet, we can sometimes be ahead of the latest knowledge and research more so than our doctors who don't always have the time to keep up with several diseases and conditions. Worse, the endocrinologist I was initially sent to at our top medical school in Dallas measured my parathyroid levels whch were high and said, "Well let's just watch it!" On the parathyroid,com site, he says if any doctor tells you that to run as fast as you can because this is NOT something you watch as it can slowly kill you and damage so many organs and that you need to get the calcium sucking mass out of your body. Hang in there!
I have endless isssues with heart palpitations and thyroid meds. I was on levo then armour now levo (tirisont) and compounded t3. I do however have PoTs so I already have a high HR.
I spoke to my specialist cardiologist about this issue with thyroid meds and my heart. He said hormones play the biggest part with blood pressure and heart rate issues, so it is not surprising you are having more problems since being on those meds.
I know it is quite extreme but have you considered a low dose of betas for the palps? I am usually one to steer clear of any other added meds but I am on a drug called Ivabradine, it is the only way I can keep my HR to a half normal level.
T3 can also cause palps and some Drs will recommend cutting that out or being on a low dose (I am on 9.5mcg daily).
The fatigue I can completely sympathise with you mine is so bad I can not work, function or think straight. I have recently been dignosed with ME but I am still convinced it is my thyroid causing the ME symptoms.
My GP just gave me Atenolol for my awful palpitations. It's another tablet to throw in the mix but it works for me! Maybe that's not the 'right' thing to do, I don't know. I've not seen anyone else here mention it, but I know treating a 'side-effect' with another drug is commonplace (certainly where I am) so I have wondered why I've not seen it when so many people have palpitations from Levo. Who knows?!
Thank you so much. When you say another brand of NDT - You mean natural desiccated thyroid like Armour? I was on Armour for a while, and I didn't feel much difference between it an Eltroxin, but it was a few years back. I didn't realise there were other brands of it.
I think my doctor might discuss other brands of t4 with me at some point - he has raised the possibility of two issues: a pituitary issue/tumor or t4 conversion problems. He said he'll see how I do on more T3 before investigating those things.
Scan of my thyroid.. hmmm. Oh, yes I have actually! I didn't get any results so I assume it was fine.
I am glad you have a functional health pro on your case. It feels as if you might need another person on your conventional medical team, who can be a fresh pair of eyes. Can you ask for a second endo / GP opinion?
I have a similar story. Doctors went 3 years under treating and over treating my thyroid and I was so sick I thought I would die everyday. Then finally a new doctor did a breath test and found out I have sibo (small intestinal bacterial overgrowth) with extreme histamine intolerance. I would have never figured this out in a million years because the symptoms did not really point to anything gut related- I really thought it was my thyroid as I do have hashimoto's. In my case with sibo I became intolerant to the t4 and my functional doctor got me on t3 only and fortunately that has brought my t3 back where it should be. Sibo is very hard to figure out and very hard to treat and eliminate. I am working with the functional doctor for well over a year and we've made good progress. If you're working with a functional doctor you could insist on taking a breath test to eliminate sibo. It wouldn't hurt and they aren't expensive. My symptoms when my histamine flares are very flu-like I wake up with body aches zero energy extremely drained fatigued head pressure puffy eyes and I will tell you a low histamine diet is extremely very helpful. Just something else for you to think about! Good luck to you I know what it's like to feel like you're going to die everyday
Interesting. I do have digestive issues, food intolerances and I'm hyper-sensitive to allergens, particularly mould, chemicals (sprays, perfume, cleaning products), I'm allergic to alcohol, and have a kind of itchy stuff on my scalp. I think I'll mention about the sibo test to my doctor and see if he's heard of it.
just to add after all my research and Doctor discussions I think many people who think they're suffering from fibromyalgia or chronic fatigue or thyroid it's sibo causing many of the debilitating symptoms.
yyes! The diet is a huge part of recovery! However the diet can only help so much because the bacteria overgrowth is letting off histamine and your body becomes saturated with histamine so controlling it with diet is only helping some of it. The supplement I'm taking called dao is another big help it helps break down histamine. Your symptoms sound very much like histamine issues from sibo and maybe even mast cell activation syndrome which some of us in my shoes actually have it a little worse with mass cell activation. I think I'm borderline with that but as you get sibo under control it all gets better. Your functional doctor should definitely want to test for sibo and even ask about the mast cells. Mast cells release histamine it's all connected! If your functional doctor refuses to do any of this I would definitely very quickly find a different doctor. In The last 5 years pinning this down I've probably seen over 30 doctors mostly functional.
I have Addison's Disease (adrenal insufficiency)diagnosed in 2002. Pre-diagnosis I was experiencing symptoms similar to yours. Exhaustion etc, could not climb stairs without stopping several times. Finally A simple U&Es test alerted the hospital that something was wrong and a junior doc spotted my unusual tan. A synacthen test confirmed Addison's. My point being that maybe your symptoms are not thyroid related.
Yes,like suzzytS1, I did wonder if your adrenal function had been tested? Addison's disease is an autoimmune condition that can be aggravated by levothyroxine. In the UK the NICE guidelines specifically mention the need to be mindful of this if a hypothyroid patient deteriorates when prescribed levothyroxine.
From my experience? Follow your gut. You feel like you are overdosed? I think you are. The symptoms are NOT unrelated (more than likely not). Stick with your functional Dr. and ask him to help you come off of the Eltroxin. Stick with the T3. LDN did not help me - but I have heard that it has helped some.
Functional Drs are the only way to go. There are some folks here that take only T3 and that being non-pharmaceutical. The good news about T3 is that if you do get to much it is very short lived. Of course, no one wants to overdose, but if you do things usually calm down in a few hours. Eltroxin, on the hand could take weeks. Ask your Dr. to help you step down and see how you feel. You will know in a few weeks at most. Do you have Hashimotos?
If you do have Hashimoto's, I highly recommend the book: Thyroid Reset by Dr. Alan Christianson. He is a practicing endocrinologist that writes about how some of us can actually become toxic in iodine (due to a poor elimination system) and how over 85% of the people who have tried to lower iodine intake feel better. (most foods, especially processed foods, have lots of iodine, as does dairy, eggs, and anything from the sea). We can't eliminated iodine, nor do we want to. A healthy thyroid has to have iodine to function properly. And yet, we can become toxic with iodine. It costs nothing to take a look at your diet and find out if you might be prone to a diet high in iodine. I took the book to my Dr. and she said it was based on sound science / and that she would help me give it a try. It took 30 days for me to find out I was among that 85%. I feel so much better. I take zero pharmaceutical hormone replacement (now for 2 years). I take tiny amounts of bovine glandular that I get without a prescription. Having a Dr. help me to navigate the way was the safer way to do this, but I was on very little pharmaceuticals when I started (TSH was 45).
Dr. Christianson explains that a lot of thyroid start in the liver - for whatever reason the liver can get toxic. He also has a book that deals with keeping the liver operating at it's best. It's called Metabolism Reset Diet.
Back to your original thoughts, when you feel like the medicine is making you feel worse? It probably is. Trust yourself. Get the Dr. to help you with a whole new "Reset".
Hello, I'm so sorry that you feel so awful. Actually I am feeling very similar and at the end of my tether now after having an intense pressure headache affecting my glands in the front of my neck with sinus area pressure, pressure around the eyes and jaw ache. I have just started a new batch of NDT (Thyroid S) 3 weeks ago and started this wretched pain around my head. I haven't slept in two weeks bar an hour here nor there. My blood pressure sky rocketed to dangerous levels last night so I had to go to the emergency clinic and they prescribed an emergency 3 day dose of blood pressure medication. That has lowered my blood pressure but not the pressure headache. I thought pressure around the eyes is to do with having hyper symptoms? On a test I did, due to the onset of these hell forming symptoms my T4 was mid range and my FT3 was slightly higher than normal range. I thought the symptoms were because of the higher T3, and so I've reduced the dose to next to nothing to see if that relieves it, but no change. I am concerned that the NDT isn't working for me any longer but I didn't do well on levothyroxine alone. Someone said I could be having hypo symptoms, I do have Hashi's I think, but not officially diagnosed, only by past symptoms. With a higher T3 reading I'm surprised if it's hypo, I am not exhausted and managing to stand after so little sleep, I have been jittery, and restless but felt chilly. My gp was useless and puts it down taking NDT, I can't afford Private doctors or lots of tests at the moment, I do buy my own NDT. Like you, I am struggling, because I don't know what to do.
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Side affects of medications causing side affects / new symptoms and confusing overall medical condition
Cytomel and Vit D
Blood Results after changing to Armour from Eltroxin after 12 weeks!!
apparently I'm going to die of heart problems
