I had RAI in 2000 when I was severely hyper. I was put on 150mcgs and did well on that dose with no issues for 20 years. Went gluten free a few years ago. All of a sudden became severely hyper again with a TSH of 0.002 So they lowered me to 137mcgs. Still hyper with 0.09. During that time I had panic attacks for the first time in my life. Felt insane. Couldn't sleep not even for an hour. Blood pressure was 160/106 Lost 30lbs in 2 months before they figured out I was hyper again. For a month and a half they kept saying I just had anxiety and threw antidepressants at me (which I only took 2 days of). Only until I rapidly lost weight did they take me serious. They just put me on 100mcgs but I feel slightly cold now. I'm just 1 week into that. My heart racing from being hyper still hasn't balanced out yet but it's getting better. Still races when I stand or stand still. Has anyone ever heard of such a random drastic change in doses needed all of a sudden? When will my heart calm down? All replies appreciate. It's been a hard 2 months and haven't been able to work. I don't drink alcohol or Smoke
Suddenly Hyperthyroid again: I had RAI in 200... - Thyroid UK
Suddenly Hyperthyroid again
Do they only test the TSH? Because that doesn't tell you anything much. A suppressed TSH does not automatically mean you're 'hyper'/over-medicated. What you need is full thyroid testing:
TSH
FT4
FT3
vit D
vit B12
folate
ferritin
to get the full story. Sounds as if they've reduced your levo too far, now. 100 mcg is not much for someone without a thyroid.
Thank you for the quick reply. They only tested my TSH, free T4, ferritin, and Iron this last test. Free T4 was 2.17 My Iron was 106 and my Ferritin was 41. And I had to beg for the iron panel. He told me he would check my blood in a week and do a better panel. This is a primary doctor who is young. I couldn't get in with an Endocrinologist for 2 more months. I did think 100mcg was a little steep for someone without a thyroid but I had all the hyper symptoms when this all came about. Lost 30lbs rapidly and felt like I was starving all the time but when I ate I felt sick. Temors, dizzy, hands going numb, crazy anxiety, hallucinations. Would wake up with adrenaline if I dozed off for just a minute. That's when they started me on the other dose of 137mcgs but the symptoms didn't subside but I could sleep 4 hrs at least and the hallucinations went away. Still lost 10lbs on 137mcgs. I have to fight to get them to test for t3 and other things which he said he would this next time.
What was the reason for treatment? Did you have Graves?
Have you had thyroid antibodies tested?
What are the ranges which apply to your result (lab ranges vary)
An FT4 of 2.17 would be severely low by most ranges could it be the TSH which would be in range but like too high for some taking replacement hormone?
Ferritin also very low.
I had Graves since the age of 15. They gave me radioactive Iodine 21 years ago. My last test a week ago FT4 was 2.17 with a range of 0.71-1.71. TSH was 0.002 range 0.27-4.20 and I get tested again in a week but hopefully this time with FT4 and FT3 levels and with what GreyGoose said
Time line on doses. 150mcgs for 20years with zero issues. Symptoms started end of November. Mid December I stopped taking my meds for 4 days and got a little relief before restarting and symptoms started getting worse again. January 3rd they changed my dose to 137mcgs and I was on that for 3 weeks before the last blood test (symptoms stayed the same besides a bit more sleep). Now I'm a week into 100mcgs. I can sleep better (5-6hrs now) but I still wake up with some anxiety a few hours. Heart rate still climbs rapidly when I stand. Just goes to 120s now instead of 180s. Laying down its 60s. A month ago I started taking b12, vitamin D (3000ius). Vitamin C 2000mg. 500mg Magnesium, and 1000mg of L Lysine because I heard that can raise ferritin if taken with vitamin C. All these are taken 5hrs after my Levothyroxine. And take my Levothyroxine a full hour before I eat. My thyroid couldn't all of a sudden come back to life could it? Makes no sense to me my body suddenly reacting that way to 150mcgs that I was on for 20 years.
One wouuldn't expect it to suddenly come back to life, no. But, stranger things have happened. Are they planning an ultrasound to make sure that isn't the case? Because obviously something is not right.
It's not a good idea to start supplements without getting tested first. If I were you, I'd stop them all until you can get tested. And then restart taking only what you need, according to your results. Also, taking them in a more scientific manner:
* not much point taking B12 alone, all the Bs work together and need to be kept balanced, so when taking B12, one should take a good B complex at the same time
* which B12 are you taking: methylcobalamin or cyanocobalamin?
* B12 should not be taken with vit C because the C blocks the action of the B12
* if taking vit D3, one should also take vit K2-MK7 with it
* taking lysine can increase absroption of iron from food, which in turn should raise ferritin, but probably not enough if you are hypo
Taking nutritional supplements can be a mine-field, you have to know what you're doing. 
Thanks! I had no idea about b12 and C interacting like that. I'm going to look into things more. My primary care doctor is basing things solely of my TSH. But I have been out of range on the high end as far as FT4. Haven't tested FT3 yet but he plans to next time he said. Which was supposed to be a week. But I'll make it 2 weeks since I just upped my dose to 125mcgs. Hopefully my heart doesn't start going crazy again. It did subside a bit on 100mcgs (100-120bpm) but like I said I started feeling cold with really dry skin which led to me to believe I was going hypo. Also I only got 2 hours of sleep last night. Went to bed fine at 12am and then popped up wide awake at 2am. Had my eyes closed for hours after and still couldn't sleep. So I decided to chat with you lovely people 😊
But I'll make it 2 weeks since I just upped my dose to 125mcgs.
Absolutely no point in testing just two weeks after increasing dose. The results won't mean anything. It takes at least six weeks for the TSH to settle down, and the T4 to start converting to T3.
Went to bed fine at 12am and then popped up wide awake at 2am. Had my eyes closed for hours after and still couldn't sleep.
That sounds like a cortisol problem.
I agree, I just ordered a 4 point saliva Adrenal test kit from Amazon. Currently in the Emergency room with anxiety and chest pains. Think it's a good idea to switch off Levothyroxine for a alternative? I feel like my body doesnt like the levothyroxine anymore. I'm going to ask when I see my primary care doc next.
So I know this doesn't mean much only a week into my new 100mcg lowered dose. But the emergency room again only tested TSH and T4. TSH was 0.792 Range .55-4.7 and FT4 1.61 range being 0.89-1.76.
Doctor wants to test blood every 2 or 3 weeks. Will do a better work up with the Primary Doctor. He promised. Anyone have lower range white blood cell count? It's been like this for the last 7 months (maybe more)I just noticed on my chart app. Wondered if it's a Graves or Hashimoto thing. Still have anxiety for some strange reason. Going to take the antidepressant Mirtazapine they gave me a month and a half ago if I again cant sleep tonight. I didn't like it but it did knock me out (only took it 2x and stopped) Can't wait for the adrenal fatigue test kit to get here. Something is definitely wrong with me unless these are just symptoms coming and going from when I was having hyper symptoms the past couple months. I tried sleeping in the ER and kept waking up with adrenaline the moment I dozed off even in there.
I'm so sorry your having to go through this. Why don't you try lowering your dose by 12 mcg each time when it doesn't feel right. Like this you don't over shoot your sweet spot. Nutrients are very important too. They help the thyroid meds work better for us. Nervousness and anxiety palpitations hair loss might be low Iron too. But first you have to test your Iron /Ferritin levels before you start supplementing with Iron.
Wishing you better days ahead.
Thank you so much! As I'm sure you know, out of whack levels take such a mental toll. I was in a bad motorcycle accident a year ago and I'd take that 10x over compared to this. I'm amazed it took me 20 years on levo to experience this. I appreciate your kind words, truly 🙏. It helps. They dropped me from 150 to 137 to now 100. A week on 100. I'm feeling cold now with dry skin and I feel like I have dry lungs. I'm going to increase it to 112.5mcgs tomorrow morning and see how I feel. Never felt cold (especially hands and feet) before until they dropped me to 100mcgs.
It is possible to become overmedicated on a dose you've been OK on for years , This has happened to me after 15 yrs on 150mcg, and i never had hyperthyoidism, just autoimmune hypothyroidism .
I became overmedicated with tremors etc , then had 125mcg & was OK for about 3 yrs, then 112.5mcg was OK, but GP insisted on further reduction to 100mcg which was definitely too little, now back on 112.5mcg.
It doesn't necessarily mean your thyroid has 'gone overactive' again ... (in fact , if you had RAI 20 yrs ago it's unlikely you've got much thyroid left to go overactive ?)
It could just mean the dose had become slightly more than you need/use , for some reason.
3 weeks after a dose change is really too soon for the GP to be re-doing bloods . (especially if they are mainly looking at TSH result for a decision about dose )
It can take TSH longer than this to get where it's going to be on that new dose .... if you test too soon , the TSH is probably still lower than it would be at the recommended 6 weeks .... this can lead to them reducing the dose again unnecessarily . If they'd waited longer . the TSH might have been higher , and they might not have reduced to 100mcg .
Also from the symptoms point of view .... 3 weeks is too soon to know how you will really be on that dose . Better to assume you will experience 'all sorts of things' and /or 'not enough improvement' for the first 3/4/5 weeks ....and only pay attention to symptoms from week 5/6/7 onwards.
You would probably have done better to stay on 137.5 for a few more weeks before testing, and if symptoms still hadn't improved by then , then perhaps a further reduction to 125mcg would have been needed ..... but going down to 100mcg seems a bit heavy handed to me.
I think adjusting thyroid hormones should be done like adjusting the steering wheel on the motorway...... tiny subtle adjustments ...... do too much and you end up 'over correcting' and fishtailing your caravan.
But having said all that ... my need for less started when i was about 50, after my menopause , and my work day was less physically active , so it's not too surprising if i needed/used less than i had when was in my 30's/ 40's..... which obviously isn't the explanation in your case.
*** Bike accident a year ago ? .. presumably you bashed your head a bit ... the pituitary controls TSH production, and head injury can be related to low TSH.... i doubt this is relevant ..it might account for TSH going low , but it wouldn't account for your overmedicated symptoms..... but just flagging it up in case anyone else has any thoughts about it.
I tried to stay on 137mcgs but my heart kept racing. Eventually after 3 weeks, I couldn't get out of bed without my heart racing to 160-180 beats per minute. I also lost 5 pounds in the last week. 30 pounds total in the last 2 months. A pound is 2.2kg. Just like how it was at 150mcgs. I can't afford to lose anymore weight so they dropped my dose. But I think too much. I only slept 2hrs. Went to sleep fine and then at 2am I was wide awake and haven't been able to get back to sleep. I just increased my dose to 125mcgs this morning as I think Im hypo now. I'm just trying to find a middle ground that I can survive on until my blood test. I can't do 6 weeks like normal for labs when my heart is racing at 150+ beats per minute and I was getting dizzy spells still. I appreciate everybody's input 🙏
Ok , that makes sense ... just checking you knew that 3 weeks is too soon under normal circumstances .... but HR of 150 is not normal circumstances . I hope things improve soon ...that sounds horrible.
I am really sorry for you as all of these new symptoms puzzle the person who has already had RAI due to being hypER and the worry must take a toll on you and your body.
Also that we have no control over what is happening and that you've already had your thyroid gland removed.
We expect the professionals to know about the clinical symptoms that arise if our medication isn't working as it should and it comes as a huge surprise that they seem to know less than many on this forum.
I hope you are able to resolve your awful symptoms soon.
Are you in the U.K.
Get FULL thyroid and vitamin testing done
Request vitamin D, folate, B12 testing now
Iron Ferritin- please add ranges on these results ….look low
We must have GOOD vitamin levels for levothyroxine
Only test thyroid levels 6-10 weeks after any dose reduction in levothyroxine
Do you always get same brand levothyroxine at each prescription
Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Ferritin was 41 with a range of 30-400. I've been taking vitamin C and L Lysine because I heard it can boost ferritin levels. I've also been taking vitamins religiously 4 hours after I take my levothyroxine. Vitamin C, B12, Coq10, omega 3s, Vitamin D. I have an appointment with the cardiologist in 2 weeks to check my heart out. Has anyone had tachycardia? How long did it take to pass once you got your dose right? I really do appreciate you all 🙏 I'm on the west coast of the US. Oregon specifically.
Ferratin of 41 could literally be contributing to your heart racing a mile a minute. On the range of 30-400, I would have to be above 215 or my heart would go berserk. My heart goes in overdrive if it hits the midway point. My tachycardia was caught on a holter monitor.
Also magnesium gets depleted when supplementing with higher doses of vitamin d and magnesium plays a vital role on the heart.
I would agree absolutely with both these
Ask your doctor to do full iron panel test for anaemia
Likely to need iron supplements or at least increase iron rich foods in your diet
Hi T808, I'm in US. Same kinda thing rather happened to me last year but a bit different. My question is what type of medication are you using? Like which brand? Also, when did you pick your bottle up last? Do the new side effect correlate to after you started using this bottle?
I'm using just generic Levothyroxine not sure the name.
I've used various brands and generics. Believe me, they are not all made the same. Brand names like Synthroid, Levoxyl, Unithroid are different from each other, just as the generics are different from one mfr to the next. Do you think your symptoms may have coincided w/a new refill? If so, you could ask the pharmacy for a new bottle w/a different lot number.
The mfr is printed on your Rx bottle, and each pill has a unique marking. Make sure it's the same one every time. A change in suppliers for generics happens and they usually don't even tell you.
Hello T808 and welcome to the forum :
It is essential that you are dosed and monitored on your T3 and T4 blood test results and not just a TSH blood test which is likely all that was run in primary care for all these years.
RAI slowly burns out the thyroid gland in situ and there is no " set time " on when you become hypothyroid but you obviously were, as doing ok on 150 mcg T4 daily for 20 odd years.
T4 is inert and a storage hormone and needs to be converted by your body into T3 the active hormone that runs the body which is said to be around 4 times more powerful than T4.
Your ability to convert the T4 into T3 can be compromised by low vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D , inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing.
So, I think in the first instance we need to see a full thyroid blood panel, and you need have all the above blood tests run plus the Graves antibodies TSI a ( thyroid stimulating ) antibody and TR ab a ( thyroid receptor blocking ) antibody.
Arrange an early as possible morning appointment and fast overnight just taking in water and take the T4, taking any, until after the blood draw.
A scan of your thyroid gland would help ascertain if there is any function there, and I have read that the gland can regrow, but everything is a guess until we see some blood test results.
Graves is auto immune disease and driven by stress and anxiety so wonder if anything has changed in your life recently.
You might like to read around Grave and if you don't know of the Elaine Moore Graves Disease Foundation you might like to dip in.
I have Graves and went through RAI in 2005 and became very unwell around 8 years later - not I hasten to add with symptoms similar to what you are describing so can't offer any other suggestions.
The doctor could prescribe you a beta block to calm down your heart and hopefully the anxiety, and I'm sure s/he could give you something to help you sleep in the short term until the situation is more clearly understood.
Just another thought - there's no correlation with taking the Covid vaccine is there and
are you on any other medications that may have caused this adverse reaction ?
On my way to the ER. After I wrote you guys I started having Chest pain, high heart rate even when lying down. Maybe I'm having a panic attack. Going in to be sure and so they can check bloodwork. Only thing I did today was take 125mcgs of levothyroxine and eat breakfast 2 hrs later. Felt shaky before breakfast. I feel like it's the levothyroxine itself no matter the dose. Yes, I switched doses so it's not the batch itself. Same generic brand of Levo
My life was going really well up until mid November when this happened. Zero stress. I did get Covid in August and had to get Monoclonal Antibodies. I felt a lot better afterward. I was in shape 205 pounds and working out every other day. Now I'm 175 and rail thin.
Hey there, I didn't realise you were in the States when I replied :
The Elaine Moore website is Stateside and has an open platform much like this forum :
You could ask the question on there regarding Monoclonal Antibody interaction with Graves post RAI treatment - I'm out of my depth but if anyone knows anything it's Elaine.
Elaine has Graves and went through RAI back at around the turn of the century and though currently recovering from cancer may well step in and be referred your question as her research into all things Graves continues.
Hope you are ok after the hospital visit and have some answers that you might like to share with us on the other side of the pond.
Any alternatives to Levothyroxine here in the US? Not sure if that's it. It's every morning like clock work. Had zero panic attacks prior to all this that started 3 months ago. I can't even doze off. My adrenaline starts pumping as soon as I start to fade off to sleep as of today.
Not absolutely sure what you are looking for, but my medicines document covers most things available in the USA:
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
From Dropbox:
dropbox.com/s/shcwdwpedzr93...
From Google Drive:
You might feel better on Natural Desiccated Thyroid - it is derived from pig thyroid and contains all the same known hormones as that of the human gland namely trace elements of T1. T2, and calcitonin plus a measure of T3 at around 9mcg + a measure of T4 at around 38 mcg,
I do wonder if your motor bike accident has something to do with what you are going through now ?
It will have caused a massive shock to your system ?
Could be the Motorcycle accident or maybe Covid? I got covid about 3 months before all this happened. I'm going to try to get the doctor or endo to try natural thyroid hormone if possible. Or adding a little t3 in there. I'm feeling a lot better now than I was a couple months ago but still not normal. Maybe I'm 80% normal. I appreciate your advice 🙏
Well, I tried 125mcgs for a 3 or 4 days (was on 112.5mcgs for 6 weeks) and yesterday and today my heart is racing when doing trivial things. Tinnitus came back, and only slept 4 hours last night instead of 6 or 7. Heart rate variation went down to 23. And my heart rate while sleeping stayed above my resting heart rate when normally it dips 10 or 15 beats lower during sleep. Kept feeling hypoglycemia the last couple days too. It's amazing that I stayed on 150mcgs for 20+ years and felt super healthy until recently. And now I can't even take 125 without issues. Only thing that changed was I went gluten free 3 or 4 years ago and had covid in August. And this started probably 3 or 4 months after having covid. Wonder if it just changed me. Oh and the bike accident but that was Sept of 2020. Thought I had room to wiggle going up by 12.5 with a TSH of 1.03. Guess not. Or it's the ashwaganda I've taken the last 2 weeks to lower my cortisol. Stopped Ashwaganda as of the last 2 days and went back down to 112.5.
I can't say much more :
I've read that there are similarities between hypothyroidism and the symptoms suffered by those dealing with long Covid :
I've read good and bad things about Ashwaganda - though can't remember exactly what now, so maybe start a new post on this particular supplement.
Are all your vitamins and minerals, ferritin, folate, B12 and vitamin D optimal ?
I'll be testing my vitamins and minerals along with ft4 and ft3 in a private test. I just went down to 100mcgs as of the past week so I'm going to give it a few weeks before I pay for testing. I am taking vitamins daily though 4 hrs after my levo dose. Especially b12 and d3 to help lower my cortisol.
Thanks! I'm going to look into it. 🙏
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