Hi everyone. Hoping to find some advice and answers. I had my thyroid removed 12/17/24 due to Graves Disease. Everything went well with the surgery, little nauseous when I woke up but that subsided. I had dinner that next with my family, went to bed and starting the next morning I was so dizzy. Felt so much pressure behind my eyes, they were so sensitive to light and having trouble focusing. The surgeon (ENT) put me on 100mcg generic levothyroxine. I was definitely having calcium issues because my hands were cramping up and I had tingling in my face. I went to the hospital on 12/19. My calcium was 8.8 then dropped to 8.4 while I was there. They did a chest x-ray and it was normal. The calcium issue eventually resolved but I was still dealing with the dizziness. My surgeon had me come in 12/26 and said he thinks it’s a vestibular migraine. He prescribed me a single dose (3 pills) prednisone and sumatriptan. I took the prednisone, no change then a few days later one sumatriptan pill and didn’t really feel anything. I thought maybe it helped my eyes for a short period. The next day I took another but still felt the dizziness. Every morning I would wake up with these internal vibrations, mostly in my chest area. But the mornings weren’t as bad initially and even some nights I would think to myself “hey I don’t feel that dizzy!” But as time went on things seemed to get worse. Mornings became the hardest. My heart rate was all over the place, going up with little exertion. I have this pressure in eyes and head, ears popping constantly. I reached out to my endocrinologist and explained what was happening and he said I’m on too high of a dose. He lowered me to .88mcg of Unithriod. A few days later I felt worse. Uncontrollable crying, jittery, diarrhea and dizziness seemed worse. I reached out again to my endocrinologist so he did blood work on 1/8 T4 1.43 TSH 1.58 T3 77. I went back to the hospital 1/16, they did a ct scan of my brain and everything looked good. I went back to my surgeon on 1/17 and he’s still saying vestibular migraine so he prescribed me Nortripyline. 10mg for a week if no change 20mg for a week then so on and so forth until I reach 40mg. He also wanted me to try a muscle relaxer first. I took the muscle relaxer that night (Friday) went to bed and was still dizzy the next morning. I took ibuprofen around 2pm Saturday and Saturday night the dizziness stopped. I couldn’t believe it, went to bed feeling great woke up still no dizziness. I had breakfast and was relaxing then the dizziness came back. I was crushed. Then back to the hospital again on 1/20 due to heart rate going into the 140s just walking up the steps. That day I got blood work before going to the hospital T4 1.76 and TSH 1.99 then in the hospital later that night T4 1.59. I spoke to my endo and asked to go back on generic levo and to go to .75mcg. I hated the levo but unithyriod felt worse. Hospital thinks I’m just “post op” 1/24 i woke up with full blown migraine vision. I thought I was going blind. I finally took Tylenol later in the day and my vision went back to normal and the dizziness seemed to subside. The dizziness came back but not the bad vision, just the initial not being able to track/focus. Then the next day I took another Tylenol and the dizziness went away again but I still had light sensitivity to my eyes. 1/26 dizziness came back. I visited my endo on 1/28 and he said even though my levels aren’t where they were before, they’re still in normal range and it’s not a thyroid problem that I’m experiencing. My primary doctor ordered an mri of my brain without contrast and everything came back negative, Xray of my spine came back normal, ultrasound of neck came back normal. I had two eye exams both normal. 1/30 - T4 1.59 TSH .91 T3 74 I got sick the beginning of February and it made everything worse. I was getting this rattling in my head, felt little someone was shaking my brain. The dizziness was so bad. I went to get a second opinion from another ENT she checked my ears and sinuses and they were all fine. She gave me a Methylprednisone pack (6 day) Referred me to PT. I went to PT and she put goggles on me and said my eyes were bouncing when I would turn my head and that’s what was making me feel dizzy. I saw a different PT that specialized in vestibular issues and she put the goggles on me and said she could barely see any nystagmus. Definitely not what she’s used to seeing with patients with vestibular migraines. She said she thinks it’s hormonal and related to my thyroid levels. 2/10 - T4 1.42 TSH 1.78. In the meantime my ferritin was dropping (maybe from all the blood work) it went to 14 so my primary gave me iron pills but then I ended up getting infusions. 2/20 was my first and I felt dizzier that night. I also finally started the Nortriptyline that night. I was hesitant because I saw it was also an antidepressant and I’ve never taken anything like that before so I was nervous. The next day my heart rate seemed higher and eyes worse. I had a second infusion 2/25 and third 2/27. Blood work 2/26 T4 1.75 TSH 2.7 T3 85
3/11 - T4 1.46 TSH 2.0 T3 82 I recently visited my endo again 3/12 and he still thinks it’s not related but he did switch me to Tirosint. I’m hoping this helps and stops the dizziness. I’m currently still taking the Nortriptyline 10mg, my primary said not to dose up as fast as my surgeon said to. So it’s only been a little over three weeks on it, sometimes I think it’s helping but other times I don’t.. as weird as that sounds. Sorry I know this is a lot of info and all over the place, it’s been a long three months. Any thoughts are much appreciated!
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Flowers44
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Also ALWAYS test early morning, ideally before 9am, only drinking water between waking and test and last dose levothyroxine 24 hours before test
is this how you do your tests
Also ESSENTIAL to test vitamin D, folate, ferritin and B12
Low ferritin is VERY common when on inadequate replacement dose
In the meantime my ferritin was dropping (maybe from all the blood work) it went to 14 so my primary gave me iron pills but then I ended up getting infusions.
High heart rate could be linked to very low ferritin
What’s your latest ferritin level
What other vitamin supplements are you taking …….if any?
low B12 can make you feel like walking on small boat in rough sea
Feeling worse in morning and better in evening suggests cortisol issues
Hey thanks so much. So I take my levo around 7am so my labs are always after unfortunately. My latest ferritin level was 2/26 so a day after my second infusion it was like 342 but my doctor said that’s because it was the day after and shouldn’t have been tested that soon.
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need 2 per day and/or may need separate methyl folate couple times a week
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) Thorne can be difficult to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
I’m currently not taking any vitamins except magnesium. I would really like to lower my dosage so that my t4 comes down a bit but would that also lower my t3?
Can you please give us your age, sex and in which country you live ?
It also helps to have a little background -
When were you diagnosed Graves Disease, and had you previously taken an Anti Thyroid drug and were you dealing with Graves Ophthalmology prior to surgery -
Do you have your T3 and T4 results and ranges pre-surgery and did you take a course of Lugil's Iodine prior to surgery -
or were you an emergency thyroidectomy and little of the above applies ?
I don't pretend to have any answers but for some Graves patients definitive treatment tends to trigger the immune system further and I'm truly sorry that you are under more stress and so uncomfortable at this point in time -
No thyroid hormone replacement works well in the body until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels in the ranges - so we can advise on these important co-factors for you -
Please try and rest up and just take one day at a time as it takes time for the body to adjust to all it has gone through and things do settle back down - though appreciate these likely sound like empty words at this point in time.
Penny thanks so much. I’m a 36 year old female living in the US. I was diagnosed with graves in 2018 and placed on 5mg of Methimazole four days a week. I tried to go off a few times and failed. During my pregnancy I was able to go off the medication around 5 months and didn’t have a flare up until a few months after delivery. Then my levels were a little all over the place for a few months due to a new endocrinologist (mine retired during my pregnancy) putting me on both Methimazole and Levothyroxine. So then I switched to the one I’m with now in 2023. He put me on Methimazole 5mg once a day and I was back to normal. I’ve posted a picture of my labs over the years prior to my surgery. Sorry it’s a bit messy, I did this one night trying to figure things out.
I would imagine your Free T3 and Free T4 quite low prior to surgery as you say you were back to normal on just 5 mcg AT drug daily - were you already having issues with your eyes ?
Was Block & Replace trialled as your thyroid hormones were too low to function on -
or was it that your thyroid hormones were jumping around and B&R seen as a better strategy - and that by fully blocking your thyroid hormone production and adding back in a measured dose of T4 this kept your thyroid hormones stable and within the ranges - did this regime suit you any better ?
Yes my t4 was usually around 1 - 1.2 and t3 was around 100. But now my t4 is higher than before and t3 is lower. My endo said I shouldn’t feel a difference though. Didn’t have issues with my eyes before. When I was placed on both meds my numbers went all out of whack. So that’s why my new endo switched me back to just Methimazole.
Ok then - so I would imagine you need to get your T3 and T4 levels back to where you felt ' normal ' prior to surgery and this might need your being dosed with both T3 and T4 thyroid hormones but first off you need to ensure that your core strength vitamins and minerals - ferritin, folate, B12 and vitamin D are all optimal as these assist in converting the T4 into T3.
The TSH is now a total unreliable marker of anything -
you have Graves Disease and have had a thyroidectomy - so your HPT axis ( the Hypothalamus - Pituitary - Thyroid ) feedback loop on which the TSH relies on a working well is now disabled - as you have no thyroid is situ to complete this internal feedback loop broken as your thyroid not there to complete the circuit.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg -
with T3 being the active hormone and said to be around 4 times more powerful than T4 - which is a pro-hormone and needs to be converted in your body into T3 - which actively runs your body like fuel runs a car - with the thyroid synchronising all your bodily needs from your physicality and stamina through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Some people can getby on T4 only -
Others find that at some point in time T4 alone doesn't work as well as it once did - and that by adding in a little T3 - likely at a similar dose to that their thyroid supported them with - they feel better.
Some can't tolerate T4 at all and need to take T3 only - as you can live without T3 but you can't live without T3 -
Whilst others find their health restored beter taking Natural Desiccated Thyroid which contains all the same known hormones as the human thyroid gland, derived from pig thyroids, and the original successful treatment for hypothyroidism for over 100 years and on the back of which Big Pharma launched synthetic T3 and T4 treatment options an the guidelines we now seem to need fit into - irrespective of the symptoms being tolerated.
Just remember that your thyroid hormone levels aren't necessarily the only thing that have changed since your surgery.
You've already mentioned calcium which could be affected if your surgeon removed or disturbed any of your parathyroid glands during surgery.
Another possible problem is that blood loss might have been significant. And in my experience of surgery for various conditions surgeons never mention it even when they should. I've had iron deficiency anemia after some fairly minor surgeries. People can suffer from iron deficiency without anemia which shouldn't be ignored, it should be treated. And doctors will often pay no attention to low levels of iron that don't meet the threshold of deficiency. But there is a huge difference in how you will feel if your ferritin (iron stores) is 30 micrograms/L or 100 micrograms/L.
Another possible problem is your levels of Vitamin B12. Some types of anesthetic gases can oxidise B12 and make it useless so it needs to be replaced. The best replacement is, for many people, methylcobalamin, which is easily sourced on most websites that sell supplements.
And finally, if your B12 is low, once you've started supplementing to improve it, a week or two later start improving your folate levels with methylfolate which is usually easily sourced on websites selling supplements. For the body to make use of B12 it needs good levels of folate.
Hi Flowers 44, Along with the great advice above I would add to definitely check your calcium levels again. The symptoms you are experiencing, such as blurred vision, are very similar to those suffered with low calcium, As are internal vibrations.
It could be that your parathyroids may have , often temporarily, been affected by your op. Calcium levels can change within the day and are affected by diet, exercise, stress levels, Vit D etc.
Might be an idea to get levels checked again, just in case, and make sure Vit D levels are adequate too.
Also could check the Parathyroid UK website and read about symptoms of low calcium just to rule this out.
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Thyroidectomy, T3, and hyperparathyroidism 
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Do I have hypothyroidism?
