Miserable, Exhausted, Fatigued on Levo 3 Years Post Thyroidectomy:

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Hey all,

I was hoping to gather any insight here as to what is going on, so pardon my detailed and lengthy post.

I had my thyroid removed to thyca three years ago.  I was ok until I had RAI and that's when everything went awry.  I was started on 150 Levoxyl and have been from there to 200, to NDT, to 125+ T3, to back to 150.  Currently I'm on Synthroid 150, increasing from 137.   I'm gaining weight, I'm fatigued,  I feel like this throws many off because they surmise that I'm hypo but I feel more strung out.  When I increase my T4 I feel a bit physically stronger but I can't stay asleep nor sleep, and that's regardless of my dosage.  Sometimes when I take my dosage in the morning,  I feel extremely hot and it can be early enough where I want to go back to bed a bit but I feel mentally wired from it and I don't know why.

I hate that I am dependent on this medicine and just want to stop it.  I feel like a magnet and the ground is a magnet and the walls are....  and I don't feel like my old self,  I can't conjure the energy to plan accordingly, I'm bloated, but mostly,  I don't sleep.  At all.  I can't take if I'm under medicated or some paradoxically over medicated and my labs seem to always be tricky since RAI, but I never had known thyroid issues prior to my TT so would love to know.  Any thoughts?  Please?

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9 Replies

  • Posted

    Christina,

    can you post what your TSH, T3and T4 levels have been and are currently? That will assist people here to give advice.

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  • Posted

    I wish I had some help for you, but I am someone who believes I was put on Levo. because of a TSH that didn't tell the whole picture. I lived like someone on speed for a year when I showed up with low grade hypertension which can be caused by Levo. ( confirmed on Mayo site) Between Levo and the 2 BP drugs they have ruined my good health. I don't know if I will ever be able to regain my good health. I feel for you cause you had no choice having your thyroid removed. It is a horrid drug. I will pray for you and hope someone will respond who will have  answers for you

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    • Posted

      Cathy.. all of the symptoms listed as side effects for levothyroxine are from being over medicated or being allergic to the medication.  Being you said you were speeding for a year and have hypertension, those are both symptoms of being over medicated.  If you are on the correct dose, the levothyroxine so closely mimics our own bodies T4, that there should be no side effects.  Levothyroxine works for many many people.. perhaps the handful of people that it doesn't work good for, is not on the right dose? 

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    • Posted

      Oh and to be severely allergic to the med is rare, your breathing would become shallow or stop, and your face, lips and eye's will swell.  There could also be an allergy to an ingredient in the levo, such as lactose.  This is not serious, but may cause some discomfort such as bloating, gas, diarrhea, ect., and is just not healthy for the body.

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    • Posted

      How much do they have you on, cathy?   I don't believe that TSH is a good factor to go by for all... that's for sure.

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    • Posted

      I agree that some are better than others!  I'm on Synthroid and take the 50 mcg to avoid fillers... but still have felt other brands are better... 

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    • Posted

      Been off the grid due to mother nature here in N.E. I started out on 50mcg and within a year moved up to 75 mcg based on lab (TSH) tests by my doctor. I was told my body was adjusting. It wrecked my life and I ended up on medication for low grade high BP with in 1 year and that is no lie or exaggeration. That is my accurate story. I have been dismissed by many, but I am not alone. These threads are full of people who end up here because their doctors are not listening and down playing side effects. Everyone's story is individual  that is why I tell people first and foremost to listen to their   bodies. You need to read, listen to others, but most of all don't be influenced by single individuals or people who put the experiences of you and others down. The human body is like a giant test tube and health versus illness is a matter of balance. Read about your body and how it functions. Be the captain of your ship. I am off all Levo now almost 2 months. I have noticed some good changes, but that is me. I will have lab work done for my doctor and see him in 2 months and Oh yes I have and do pray and I trust for the Lord's guidance and am not arrogant. Be well and I will pray for you. Not everyone embraces illness like an accomplishment and a pill list like awards. Thank you for writing 

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  • Posted

    Let me see if I have this right.

    1. Your thyroid was removed

    2. You felt fine...for how long?

    3. You received radioactive iodine treatment. It made you feel bad.

    4. You have since been on thyroid medications and do not feel any better.

    Are you working with an endocrinologist? Levothyroxine works just fine for many people but not all.

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    • Posted

      Thank you for responding!

      To answer your inquiries, yes, my entire thyroid was removed.  The *only* time I felt ok was the interim from my surgery to RAI.  I honestly actually felt extremely optimistic following that as I slept really good and felt ... *good*.  I was convinced that my thyroid being gone was a good thing.  

      RAI caused a lot of issues for me such as tinnitus and eye floaters.   A few days following I awoke to a nasty eye bleed and have had floaters since. 

      I started on 150 post-RAI and about a week later is when I started to feel much akin as to how I do now.  It's been all over but 150 tends to be the median I found and after going up, I'm starting to feel more "strung out".  I don't have deep sleep, I wake up exhausted, I feel irritable, edgy... the ONLY time I feel good is in the evening.   

      I feel like someone that has been awake for days and needs to down pots of coffee to get by... but can't sleep it off. 

      Also, my TSH is always contradictory...   On 137 it'll ebb but as soon as I go to 150, as I did again, I feel that achiness behind my eyes, I am lethargic, miserable...  like I have an anvil holding my body and brain down.

      I hope this helps.  rolleyes

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