Losing my mind, what can I do?

Posted , 4 users are following.

This discussion has been locked due to a period of inactivity. Start a new discussion

Hello everyone. I’ve been recently diagnosed in September 2017 and started off with a TSH of 8.12. I got on levo @ 50 mcg and my TSH decreased to 1.66. I’m still having symtoms and got levo increased to 75 mcg in late November. I’m experiencing increased memory loss and wonder if this will subside? I feel like I sometimes remember less stuff than I did before I got in meds. I can have conversations with folks and a week later forget that I had them or have a hard time remembering details. I also have trouble concentrating. No matter how hard I try to pay attention and repeat what people say in my head, I’ll draw blanks when I get asked something pertinent to the discussion we had. It’s affecting me at work...I’ve heard “remember, we talked about this?” A couple times. It’s embarrassing and frustrating. I do have some lucid moments.

Besides notifying my doctor and carrying a notebook with me everywhere I go, i don’t know what to do, any suggestions?  I do update my doc by email every month when I get my blood tests but it seems like it’s all status quo and the focus is just to decrease TSH. 

Thanks

0 likes, 11 replies

Report

11 Replies

  • Posted

    I feel the memory problems in your case are less related to TSH levels what you have mentioned above(I got on levo @ 50 mcg and my TSH decreased to 1.66..).That TSH level maybe outside upper threshold but not so much to worsen the scenario as you told above.I say this bcoz my TSH level has been 25.4 and I take 100mcg levo daily.I feel your memory issues are due to some other nutritional deficiencies

    Exercising daily does help in hypothyroid case!!

     

    Report
    • Posted

      Thanks, I will definitely try exercise. I’m having a bit of a challenge even with tasks like going up and down the stairs of my apartment or lifting heavy boxes seems likes I’m out of breath all the time. I’ll definitely start with walks and increase. Thank you 
      Report
  • Posted

    Hi emiC. Believe it or not, you aren’t alone. 

    You have two choices on the meds 1)  stay with the Levo and see if it eventually works for you, 2) try an NDT or OTC  glandular, to see if you immediately get better results.

    I found the levothyroxin didn’t work for me at any dose, and it actually accelerated my thyroid disease and worsened many of my symptoms.  So if you’re observing that the medication is makings things worse, then that’s what you have to deal with. You’ve gone to all the trouble to track and log everything. At this point, your best option is to make the best decisions you can based on the data you’ve collected for yourself.

    I went though 2+ years trying to get the Levo right without success and was far worse off fir it. Once I went off, my head started to clear, though I still have bouts of brain fog due to hypothyroid flares. Also, my hair has been growing back,my cyst has shrunk. All the holistically things I do are far more effective without the Levo.  

    The supplements that helped me get the most immediate and effective relief has been essential amino acid supplements. You can take them iregardless of what sort of thyroid replacement therapy you’re doing. 

    There are also many supplements  and  dietary changes you can make to support your thyroid.

    Report
    • Posted

      Hey, thanks for your thoughtful response. Besides the amino supplements are there others you recommend? Specific brand? I’d definitely like to try something in addition to changing my diet. Thanks
      Report
  • Posted

    How did you feel before you were dx ? Does Quest labs do your testing? What company distributes your pharmacy chemical? All the thyroid replacement is made in Main Land China.
    Report
    • Posted

      Hi Cathy, everything is such a blur, I knew I was forgetting a lot of stuff ore levo. Seems like it’s worsened.  Everything goes though my medical provider- Kaiser Permanente. So not sure if the lab inside is an independent contractor. I do know I’m on generic.  Do you know if going brand helps? Thanks 
      Report
    • Posted

      I tried several different brands of Levo. Some were “less worse” than others. The biggest problem was that I was so wonky while taking the Levo,  that by the end, I couldn’t tell what was what any more. 

      The longer I  was off I think it, the more my health improved.

      I think Cathy’s  point about third world manufacturing is very valid.  I was also treated for three different types off parasites not found in developed countries. If yuread the many posts on side effects of levothyroxin, you’ll see that many people report flue like  symptoms, which could be due to parasitic infections.

      There is a product called ThyroGold. It is non prescription, so you have have to pay for  it yourself. It is organic, produced in New Zealand.  Made from bovine, so the ratios if T4/T3 are closer to humans. IT WORKS BERY well, but you need to know how to dose it yourself.

      Report
    • Posted

      Listen to Mt View Catherine she has technical knowledge that I don't. My history was I was normal and healthy until I got stung by a Quest Lab result, that now I am questioning. I had problems from my first Levothyroxine Rx. It felt like what people describe who have taken "Speed". I was like a racehorse on the inside and physically was loosing strength, but my doctor denied my complaints. I trusted him and now 3 3/4 years later I have had a multitude of  life crippling sx , plus low grade high blood pressure I can't seem to reverse even now that I am off Levothyroxine for 3 months. I know some people swear by Levothyroxine and "say " they are doing well and God love them, but my experience was that I have been left with the feeling that I have been poisoned and it would seem as though I have a lot of company on sites like this one and class action sites ( where you go to get the truth about any medication). I don't understand why so many people are so sick if these drugs are so darned good, but what I do know nearly all our medications are made some where other than the USA in the case of thyroid replacements there are a load of companies in Mainland China who supply to companies in the USA who "distribute " thyroid replacement. I too have a "healthcare group much like Kaiser, who controls all aspects of the care you receive. The lab my insurance group uses is Quest which is a provider from sea to shining sea and I have come to believe they are just plain corrupt and I don't trust their numbers at all. Add to all that it is legal medications can a potency variance which means not all your scripts are necessarily the same exact strength and in the case of any hormone it doesn't take much to send you over the edge sort to speak and couple that with you many not always be getting the same generic brand all the time. That information came out of information from the suit against Mylan who distributes most of the Levothyroxine. If you can step back and just think about it apart from your own situation it is literally a nightmare waiting to happen. Now my situation I believe is different than many cases I don't believe I ever needed the drug, but what I am dealing with is long term affects of that drug and the BP drugs I was put on because of the effects of levothyroxine which is documented on a premier cardiac site. Personally I don't trust the lab values, but that is me. Sounds like you had some issues prior to be put on Levothyroxine that need sorting out and correct diagnosis. I can't afford it, but would recommend an intergrated practitioner some one who is actually equipped to dx. Sound like you are on the West Coast of the USA, but I would check out Beverly Wedda who is in the Newton/Needham area of MA on -line and ask her for a referral she is a really descent and trust worthy physician who has been trying to improve healthcare. She helped my mom in the last year of her life after many decades of what I would call poor quality healthcare, but listen to Catherine she understands the nuts and bolt of thyroid and can explain the chemical end. I have been praying for you. I had made a decision not to post for a while while I journey through what I hope will be my recovery, but then I read your post and it touched me greatly. I don't have much to offer, but I know what life line Catherine and others have been for me.

      Report
    • Posted

      Thank you for taking the time to respond.  It’s tough to trust providers and pharmaceutical companies sometimes. It seems like levothyroxine seems to be the only answer. I’ve questioned the need to use that med but I’m met with reasons not question: 1) give it time 2) the dose may be to low. It’s not a matter of whether this med is the right one for me. Surely there must be other options. 
      Report
  • Posted

    Your message will be the last I respond to for a good long while. I had been staying away, but something in your original post just struck me so powerfully . You must do what is best for you no matter what other people's experiences are . Don't second guess your self. We all do the best we can at the time. A good 90% of people visiting this site just need encouragement. Most of us are stuck with an insurance plan either we can afford or that is available through work and the doctors that go along with the plan. Second opinions and non stop blood work is usually not a luxury most if any of us can afford. As you probably know I believe I was misdiagnosed to begin with and had lethal side effects from my first doses and from there the damage to me escalated. I have been off the Levo. since 9/9/2017 after 3 3/4 years of being on it. I am patiently trying to recover. I am researching Quest Labs who has a monopoly in all lab work done in the USA. I suspect they may very well be askewing lab work to promote increased prescription writing, need for more testing in support of these insurance dominated healthcare groups. Then there is our prescriptions. We can't buy prescription medication through Canada cause healthcare fought against it cause they fought it was dangerous a few years back, but almost none of the prescription medications we take are made in the USA by USA companies. Medication are made in 3rd world countries by 3rd world companies and distributed by USA companies who make beau coup bucks and take zero responsibility. It is a hot mess! On top of that by law potency of the same drug from company to company , batch to batch can vary in potency. And if you get generic because you are locked into it with your insurance you may and probably don't get the same "third world brand" at every refill. We have more regulation and safe guards over bakery products made at the corner bakery in the USA! This is no hysteria this is the God's honest truth. FYI Thyroid replacements are made in Mainland China and BP meds are made in India. I will be researching how we can get our pharmacies to be forced to reveal where their generics come from. In my case my Levo came from CVS and on their web site Mylan product is pictured, but Mylan doesn't make it they distribute it, so I contacted CVS on their facebook site and I asked the question and their response to me was "you have to call us", but you can't get through when you call and they never offered to put anything in writing. This is what I am going to busy doing. I will also be praying for us all cause we are all in very real danger. "Do no harm" and doctors are 2 phrases that should not be used together. Doctors are struggling just to stay employed. Most have sold out their integrity for a job and when questioned will always fall back on what is recommended, the newest standard. Do what is best for you .

    Report
    • Posted

      That pretty much says it... It’s a HOT MESS , is an understatement. 

      A simple logging and tracking of symptoms with and without meds is an easy way to debunk the system. Unfortunately, most people don’t have even the most basic of scientific training, and so they make “science” their religion, following blindly. 

      Nobody wants to come to the realization that a medication doesn’t work. Afterall, we (believe) we have no other options. We are a seller’s dream of a captive purchasing audience. We are desperate and uniformed. This adds up to giant $$$$ got a business. But we do have a choice, we do have options.

      Thyroid disease is epidemic where I was living and virtually every woman I knew was on it had taken thyroid medication. They all came to the conclusion that the synthetic thyroxins don’t work to alleviate the symptoms. Many developed fibromialgya while taking the synthetic thyroxin. The ONLY women I know who are still on the Levo were diagnosed solely on TSH, are on the lowest dose, had no hypo thyroid symptoms, and are in superb health.   I watched friends and family go through short term protocols for thyroid treatment with Levo- they wind up a worse mess even with short term use. I’ve also seen friends and family on NDT. Sometimes works, sometimes doesn’t- there are many factors and many manufacturers, so many variables, it’s impossible to narrow things down to absolutes. What I suspect is that there is widespread filling of the NDTs with synthetic thyroxins, as there is no way to monitor this. And after years of shortages of NDTs, there was magically no shortage around 2013. Prior to that the NDTs were working for me. Coinciding with the onset of mass supply of NDTs, they stopped working properly for me and the dosing was insanely wonky. Hence my desperation in trying the Levo. 

      In the mean time I’ve dealt with virtually every geriatric disease possible in caring for my mother. I though thyroid disease and treatment were the exception. They are not. The treatment of every other disease is just as dysfunctional, though diagnosis is more established.

      The lab results from blood work are interestingly similar across demographics. I find most often blood sugar, cholesterol and thyroid levels show results as borderline. Like really, everyone I know has an a1c of 5.9, when they go their annual physical, really? Once in a while, there is some variation on labs, that actually reflects what’s happening with symptoms, but mostly they don’t. Like someone just made up a bunch of numbers that are borderline.  Then we are diagnosed and treated based on these numbers. 

      The practice in the US is to have an overseeing person who has gone through proper education, training and state testing to receive a certification. However, it is the practice to allow those holding the certification to “oversee” lower level trainees in actual practice of lab work, physical therapy, all home therapy, nursing, etc. so those people doing the bulk of the work are not fully trained. It’s impossible for the certified person to properly oversee treatment, testing, etc when they’ve never seen the patients, the actual testing, etc. we’re basically relying on data collected and submitted by lower level trainees as reliable. These trainees are learning, they don’t have the educational foundation to work independently if properly administer tests. You generally are not told when you are being evaluated by a nonprofessional. I’ve been through all this with home care with my mother. I’ve watched, seen how tests are done and recognize when they’re administered incorrectly. These trainees are so incompetent, with minimal training. I’m talking a half hour orientation in some cases.  I’ve been dealing with it for two years in all with my mother- hone care, rehab, hospitals, icu, emergency, you name it. It’s easy to recognize trained and competent people, once you’ve been through it for a while.  Sadly, they are rare. Most often protocol overrides common sense, liability overrides patient safety- how crazy is that? 

      Report

Join this discussion or start a new one?

New discussion

Report as inappropriate

Thanks for your help!

We want the forums to be a useful resource for our users but it is important to remember that the forums are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the forums is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.

newnav-down newnav-up