Haven't felt well in months.. possibly overmedicated?

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To Whom It May Concern,

*I'm a 23 year old male*

So about 2 years ago I was diagnosed with a hypoactive thyroid. I started at 50mcg which didn't effect my levels too much due to the fact that my first blood test read at 73 TSH level. Then I moved to 75mcg, still not where my levels were supposed to be reading at 30 TSH level. Then to 88mcg getting it down to 8 TSH level. Now lastly, starting in June 2017 I was put on 100mcg which finally stabilized my level. At first, I didn't feel any symptoms whatsoever. I was living my normal life & everything was fine. Then suddenly, 2 months later I had this episodic feeling as if I were going to faint & just felt absolutely awful. Since that one episodic feeling I haven't been the same. I wake up everyday feeling tired regardless of how much sleep I get, I'm having constant headaches followed by pressure & dizziness in my head, I'm experience severe reflux & digestion issues, I have an awful straining/pressure feeling behind my eyes leaving them bloodshot & leaving me feeling uncomfortable, I feel as if my body is trembling uncontrollably inside, etc. I have done absolutely every test possible. Cat scans show nothing wrong in my brain, endoscopies & colonoscopies show nothing abnormal in my GI tracts or stomach, I've worn heart monitors for weeks & my heart is fine, I've done sleep studies & absolutely nothing is wrong, & my thyroid levels have been stable at 1-2 TSH level. My general practitioner tells me that my levels are okay so he doesn't believe that it's thyroid but thats the only consistent medicine I've been on. I went from being a college athlete with a healthy life to not being able to work somedays because the pain from these headaches & episodic feelings have derailed my life. Have truly been the worst 7 months of my life. Does anyone think that the final answer to all of this is the synthroid that I've been taking? Whether it's too much or the levothroxyn all together? Please respond with any information or opinion at all. Thank you for your time.

-Joe

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  • Posted

    Tell your doctor right away if any of these unlikely but serious effects of high thyroid hormone levels occur: increased sweating, sensitivity to heat, mental/mood changes (such as nervousness, mood swings), tiredness, diarrhea, shaking (tremor), headache, shortness of breath, bone pain, easily broken bones.

    Get medical help right away if any of these rare but serious effects of high thyroid hormone levels occur: chest pain, fast/pounding/irregular heartbeat, swelling hands/ankles/feet, seizures.

    A very serious allergic reaction to this drug is rare. However, get medical help right away if you notice any symptoms of a serious allergic reaction, including: rash, itching/swelling (especially of the face/tongue/throat), severe dizziness, trouble breathing.

    Have you spoken with the pharmacist and had them research the 'black box warnings'?  My internal medicine guy told me I needed a gastro because 100 mcg (toxic dose) of Levothyroxine gave me gas.  I called CVS and they told me it was on the list of usual side effects.

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    • Posted

      My mother is a nurse & we are well aware of the symptoms. Just so strange that the blood tests keep coming back so normal. As you know not having clear cut answers just gets very disheartening. Going back to the doctors tomorrow about changing doses or medication in general. Thank you.

      -Joe 

       

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    • Posted

      Hi Joe, in the US, docs generally go by the ranges given by the labs. Unfortunately, while the labs have very high ranges, the authorities for thyroid disease have now reduced the ranges so that TSH should be between 1-3.  The ranges for T3 and T4 are also quite broad. In addition, there is a biological ration of T3:T4 that gets thrown out of whack by the meds. You’ll notice with the levothyroxin that you T4 is mid to high range while T3 is mid to low range. Variation from biological ratios can result in symptoms of both high and low thyroid simultaneously. 

      With meds, most people feel best at the high end of normal ranges. However, by dosing at the high end, you get higher suppression if your own system’s functionality. This leads to higher and higher dosing as well as increased side effects.

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  • Posted

    Joe,

    One of the things doctors don't usually don't of think of is you may be having a reaction to the fillers a medication. Years ago before my current situation. I had bad reactions to synthroid.  It was the fillers. Tirosint is one of the new thyroid medications. It doesn't really have any fillers, it's in a gel. Keep trying different thyroid medications until you find one that works for you.  I had a doctor years ago when I was on synthroid that told me take synthroid or I won't be your doctor. I said good by to him, found another doctor, started taking a new medication and all was right with the world.

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    • Posted

      This is very helpful. I will bring this up to my doctor in our appointment tomorrow. Thank you so much.

      -Joe 

       

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  • Posted

    Hi Jb, try reading the levothyroxin group. You’ll find the side effects are broad and far reaching, to the point that the side effects are worse than the disease for many off us. There are literally thousands of posts from people who cannot tolerate levothyroxin. 

    At the very least, read the insert that comes with your medication, it should give you a begining of an  idea of the side effects.

    From what I’ve read and experienced personally, levothyroxin side effects range from halitosis to fibromialgya and anything you could imagine and then some.

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  • Posted

    I an sooooooo sorry to hear how much your suffering I do understand I don't know exactly how much help I can give you However I was once put on synthroid It was my Psychicatrist It's a little weird I had every symptom of Hyper It was like I was on speed I didn't need much sleep I was driving 2hours to Los Angeles constantly The house was perfect You get the idea But I started feeling a little sad Hence why he put me on medication The next morning I felt no reaction As days went by I knew i didn't feel right But I thought I had to wait for it to work like a anti depressent But my 2 kids who were teenagers and my best friend told me Your not acting right So I stopped That was 2005 I lived in depression on and off for years It turned out I have an enlarged thyroid and had blood drawn and T4s were low But my doctor said No big deal Out of frustration I stopped going to the doctor and went to a new psych dr I was put on different anti depressents and anxiety meds and it a little Thru learning about the thyroid because my mother has hypo and my now 27 yr old has thyroid cancer I have read everything I could get my hands on My eldest went to medical school Along with studying my daughter said Doctors have forgotten that the thyroid can confuse them with blood results You may show your Hypo when your really Hyper I believe that is what happened to me Daughter with cancer had those symptoms you have However she had a large lump on the side of her neck My point to everything I s Don't give up See a rumatologist or an internist You said everything came back normal Have you had your cortisol checked That can wipe you out I also wanted to say Even though my mothers blood work sometimes comes back normal Her doctor at one time put her on meds anyway And she felt great New doc took her off She lives with it But feels better on the meds Enough Rambaling I wish I had better information I know what your going thru Its a living nightmare But persist Don't give up I could sit here all day and explain everything I went thru But that would take hours You need to get back on the field or court Please just keep looking Keep going until you get an answer I am going to show this to my daughter I'm sure she will have medical advice 

          Take care

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    • Posted

      In addition to meeting with my doctor tomorrow I also have an ultrasound of my thyroid scheduled. I know I do have an enlarged thyroid with some nodules on the side but all benign as of now. Thank you for telling me your story & thank you so much for relaying my story on. Not feeling normal & putting into words how you feel has been so tough & it's reassuring to hear from you kind people that I'm in fact not going crazy. I know I have a long road ahead of me but would love nothing more than to get back on the court & for these headaches & symptoms to subside. Thanks again.

      -Joe 

       

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    • Posted

      Jb, you have many options besides levothyroxin. There is a treatment progression that most thyroid patients go through... they usually find relief somewhere along the way. I’m pretty much at the end of the line. The progression is levothyroxin (Synthroid, generic, compounded), NDT (Armour, Naturethroud, WP, NP),  depending on where you are you may have the option of a combo of levothyroxin and T3, though I’ve not found this available on the US. Once patients exhaust these, they go rogue with OTCs ThyroGold or other bovine glandular. Last is amino acid therapy, which I found to be helpful. 

      It’s important to know that none of these treatments is truly bioidentical and that replacing thyroid hormone has the natural effect of suppressing your body’s production of thyroxin. It’s easy to wind up on a path if ever increasing dosage. The higher the dose, the worst the side effects become. 

      Myself, I got the best relief from amino acids, but I’m (advanced) Hashimoto's. Sounds like you’re Graves’ disease, as your extremely high TSH indicates. It’s important to do something to treat thyroid disease. Unfortunately, thyroid disease is autoimmune and while medication can control thyroid symptoms, it does little to stop the progression of thyroid disease. 

      Thyroid disease is autoimmune, caused by exposure to chemicals, radiation, allergens  and microbial infection. It’s important to remove immune system triggers and treat the immune system . Unfortunately, there is no medication for autoimmune disease, so most people seek alternative remedies such as TCM, naturopathy, homeopathy, supplements, herbs, acupuncture.

      You are young, your body has a much higher capacity to bounce back. However, you also have your whole life ahead of you, so you’ll want to find solutions that work so that you can have a life besides thyroid disease.

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    • Posted

      Joe, no you aren’t crazy. In fact, what you’re experiencing is pretty typical fir thyroid disease. We’ve all been there. It’s pretty standard stuff really.
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  • Posted

    I feel your pain, I was diagnosed 20 years ago with underactive thyroid and being young I just done as the Dr told me to do, take thyroxine and every year it went up md up and down and down . I have suffered anxiety on and off over all these years and I blame it on my thyroid , I blame my weight gain on it also. My fatigue, depression , mood swings and feeling cold all the time . 

    I go  to my Drs for my blood test but unfortunately in the UK they will only check your TSH level nothing else, they say that’s all they are allowed to test . Great o I have to suffer . I feel no one cares and the past 5 months I have been really ill with it all, dizzy spells , detached feeling headaches , pressure in the head . Some days I can’t  even leave the house . It’s a horrible disease to have and I feel it’s never highlighted on any TV programmes . If it’s diabetes they can offer you it all which I think is great but why nothing for us suffering . 

    Keep fighting 💕

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