TREATMENT UPDATE: MY THYROID FIASCO

In March, I had my thyroid and iodine levels checked.  The blood tests had indicated sub-clinical hypothyroidism.  What this means is that I have a TSH level that is slightly out of the normal range, but my T4 and T3 levels remain in the normal range. I also showed a slight deficiency in iodine levels.  For whatever reason, I have difficulty tolerating any type of supplement or medication that can potentially be stimulating.  I had been on thyroid medication before, but with great difficulty.  Not wanting to derail any progress I had made, my nurse decided she would gently treat me for a few months with iodine to see if I could get my TSH levels back into a healthier range.  Despite taking the iodine and continuing on my Lyme treatment plan, I have continued to experience some mild symptoms of hypothyroidism (weight gain, muscle pains, dry skin, etc).

© Com Salud

© Com Salud

Two days ago,  I had my routine, monthly follow up with my Lyme Nurse Practitioner.  After some careful discussion, she confirmed that I was still exhibiting symptoms of hypothyroidism and that the iodine had not done enough to restore optimal thyroid function.  In the past, I had used Armour, a natural thyroid preparation made from porcine glands (such a lovely thought).  My longest stretch of Armour usage was about one year, during which I continually experienced nervousness, jitteriness and a few other strange symptoms for the duration of time I was taking it.

My nurse practitioner felt that since Armour is made with both T4 and T3, perhaps I did not need the extra T3 and had begun to experience symptoms of hyperthyroidism instead.  Since no one had ever bothered to re-check my blood levels, we can only guess this is what had happened.

We decided my best course of action this time around would be to try a T4 only preparation in the form of Levothyroxine, beginning at the lowest dose of 25mcg and working up if need be.  Excited about this new treatment plan, hubby and I swiftly went to the pharmacy and I gulped down my first pill before I was even out of the store!

One hour went by.  I felt nothing.  Feeling nothing is usually a good sign with me as it means I am not reacting negatively.  I thought, “This is it.  This will finally be the right medication.” As the next few hours progressed, I had forgotten I had even taken the pill.

Approximately three hours after I had taken the medication, I began to feel buy soma online without prescription burning pain up my spinal cord and a severe sense of achiness right down to my very bones.  I shivered with chills and had to cover up with a blanket.  I tried to go to sleep, but despite taking my normal sleep medication, I was unable to catch even a wink of sleep.  At 4:00am, I was up dry skin brushing and taking an epsom salts foot bath trying desperately to calm the burning sensation that was occurring throughout my body.  I rubbed some calming essential oils on my wrists,  took some additional sleep medication and finally fell asleep for a few hours.  This was not the intended reaction to the medication.

As is often the case with Lyme Disease, nothing is ever very simple.  This can get very confusing and actually quite frustrating.

Yesterday, I opted not to take the medication.  I am not sure I feel brave enough to go through that again.  It just may end up as yet another addition to the ever-growing dizzying spiral of medications and supplements.  It takes a lot out of me when I have to endure those excruciating flare ups of burning in my brain and spinal cord mixed with sleepless nights.  I am meeting with my local LLMD (Lyme Literate Medical Doctor) next week and will run this scenario past him for a second opinion.  I don’t know why I have this sort of reaction to thyroid medication and I am feeling a little bit dismayed at the moment.  Since all of my doctors and nurses visits are paid out-of-pocket, I hate having an unproductive visit and that is currently how I am feeling about this last one.

Hopefully, I can get this piece of the puzzle in place soon.  Progress has been made but it is very slow going.  I will be investigating an interesting new treatment approach during the month of June that may help to direct the next steps of my treatment that I will be writing about.  In addition, next month I will also be writing a full 8 month treatment update so I can compare my current progress from that of 4 month ago.  Until then, I will be brushing up on the anatomy and physiology of my thyroid gland.

Don’t be jealous.

I would love to hear from you about your experiences taking thyroid medications.  Has it been helpful?  Did you have trouble tolerating the medications?  Please feel free to leave me a comment.

To read the update to this post, please click here.

 

10 thoughts on “TREATMENT UPDATE: MY THYROID FIASCO

  1. Hi,
    I had Hashimoto’s thyroiditis before Lyme disease. You should know that Synthroid contains lactose and gluten. Also, because it is T4 only, your body may not be able to convert it to T3, the active form of thyroid hormone. There’s also something called reverse T3, which is an inactive form of T3 that can build up if the conversion doesn’t work right. I don’t know about the burning you experienced but you might be allergic to some of the fillers in Synthroid. Check the ingredients. I take Armour now but am considering a T3 and T4 med made by a compounding pharmacy. My LLMD suggested this. With the compounded meds, you can adjust how much of each hormone is in the pill. Good luck.

    • Hi Miss Diagnoses,
      Thank you so much for your comments! I really appreciate it. The burning has been something I have experienced since the Lyme entered my CNS and brain. It’s referred to as excitotoxicity and is very annoying. It is also probably related to excess inflammation in the body which Lyme does such a great job of giving us! It is better than it used to be, but still can be awful at times. I know I need to beat back the infections more too as I am still relatively new to Lyme treatment. The thyroid on the other hand…I have been battling that sucker for 5 years now! Maybe even longer. I have such difficulty tolerating any stimulating medications or herbs. They all seem to cause the same response. I first tried compounded NDT, then switched to Armour in 2010 and eventually had to stop it at about a year as I could no longer handle the hyper, nervous feeling. My thyroid was okay for a few years and I had an inkling it was running hypo again. Sure enough. I was right. This time we decided to try something I had not yet tried which was the T4 only prep. That was just as bad as the others. Who the heck knows. Perhaps it’s a higher up problem in the pituitary with Lyme and toxins affecting my brain chemicals. I have two appointments coming up in the next few weeks so hopefully will be able to get this straightened out. I do like your idea of compounding them at lower doses though so if I need it, I could start MUCH lower. Also, I think Armour has once again been reformulated since I last took it so it might be better a second time around. At least there are several options. Thanks again for your imput!

      • I just read about Lyme and the pituitary…ugh…and the adrenals…aargh. I am very very new to Lyme but I have had the thyroid stuff since I was a kid. That being said, I STILL don’t know enough about it. Do you know about the Thyroid Summit going on now? Dr. Horowitz did a presentation about the thyroid and Lyme. It was great. I am taking Armour right now and I’m feeling a little bit nervous and hyper (I think maybe it has too much T3), but I hear Nature-throid and WP Thyroid are better. My doc doesn’t use them unfortunately. Some Lyme people seem to like the compounded T3/T4 the best. Maybe the compounded synthetic if your body doesn’t like the compounded NDT? I just switched from Synthroid myself this year…I was on it forever! Good luck with your appointments and all this. Thyroid meds…aaargh.

        • Miss Diagnosis, Even doctors don’t seen to know much about the the hypothalamic-pituitary-adrenal axis either. Then you throw the thyroid in too and it just seems to compound the problem! I am taking some adrenal support supplements including, ashwagandha, vitamin C, some b vitamins and a little licorice. Also addressing things like mitochondrial dysfunction and the methylation cycle are supposed to help the pituitary. I am working on both of those areas with some improvement noted. Perhaps if I continue along that path, my thyroid will just work itself out. Who the heck knows! I had those same symptoms on the Armour, but with time, instead of lessening, they worsened and I had to stop it. Maybe you will adjust. I have no experience with Nature-Thyroid or WP thyroid but have heard of them. I don’t think I know anyone that has taken them though. Grrr…to many possibilities and uncertainties. You are right. There seems to be so much more to learn. I did listen to Dr. Horowitz speak on the Thyroid Summit and found it very informative. It also made me feel like there is still so much more treatment my body needs though to be well again. I felt a slight twinge of discouragement. I too hope my additional appt help to prioritize the next areas to work on. It’s one day at a time, one step at a time. I checked out your blog btw and love it. I love your honesty about what you are going through. We have very similar stories actually and our journeys to get a proper diagnosis have been equally LENGTHY! Keep in touch. I look forward to hearing about how you progress.

  2. Jenny, I have been on Lexi for 4 years and as far as I know no problems with the meds. Of course, I don’t have Lyme disease either that is that I am aware of, as you always do not get the rash! I still get very tired more so now then ever before, can’ t get anything done, but have COPD which has worsen, but at times do not need oxygen. Good luck finding out what can help. I am still looking for more. I go to A support meeting every month at the hostipal that helps seeing other people in the same way!

    • I often do have reactions to meds, even supplements. I have been able to tolerate more things though as of the last 8 months, so that is a positive change for me. I am with you though, still always try to find more that can help me feel better. We are actually beginning a support group in Chicago very soon. Already have the Facebook page up. Just haven’t set a date for the first meeting yet. I am excited to interact with others going through the same things as me as well!

    • Sounds like you are taking a lot of good supplements! I have been afraid to add new supplements … I also get reactions. Even if my LLMD recommends a new one I get nervous. Yeah, WP Thyroid and Naturethroid seem to be popular among the thyroid bloggers … fewer issues with fillers I think. It seems like you have really done your research–one of the hardest things for me about having all these diseases is keeping up with the massive amount of information! I have a lot of brain fog and I am still only two chapters into Horowitz’s book. Thanks for the compliment about my blog–I love yours also! I have been following for a while but never commented until today. I did get discouraged watching Dr. Horowitz’s video, wondering if my doc should be treating more aggressively. Your blog title says it all … it’s definitely a long road!

      • Thanks Miss Diagnoses! I worked in healthcare as an Occupational Therapist and in fitness as a Pilates instructor so I really had a strong knowledge base before becoming ill. Who knew all my school and years of clinical experience would be used mainly on myself! I feel blessed though that I have that background to draw on. I commend those that are trying to learn all of this from scratch. It literally is like teaching yourself an entirely new field of study! For supplements, I am taking whatever I can tolerate. Most of the supplements I take, I started out with minute doses and just slowly raised them over time. Wednesdays and Sundays have been reserved for increasing my supplement doses for about the last year. If one of those days approaches though and I feel like I am still feeling effects from the previous time, I skip that particular day and wait for the following Wednesday or Sunday to arrive. That way, I have been able to keep track of what is impacting me negatively. Otherwise, I never could figure it out and it was so darn frustrating! It’s funny. After you and I had been talking about the various forms of NDT, a friend of mine called me and told me he is taking Naturethroid and doing well on it. He did mention though that he started very slowly on it and it took him a year and a half to work up to the full dose the doctor wanted him on. Looks like slow and steady wins this race too! I have not read Horowitz’s new book but was thinking about getting it. Do you recommend it? I agree with you though. Sometimes reading about these aggressive treatment programs makes me wonder if I am going too slow with mine. Then I usually end up asking myself the question, “Are you making progress?” If my answer is “yes,” and it currently is, then it does not matter to me what anyone else is doing. If I could not say I was making progress, then I would have to look elsewhere for treatment. At this movement however, I do not yet believe I have reached maximum benefits from my current treatment so I will continue on with it. Overcoming discouragement is one of the hardest battles of all with this illness! Please keep me posted on the book. If it seems helpful, I will buy it.

    • That is an excellent question Carolyn! It’s because the CDC (Center for Disease Control) does not recognize chronic/persistent Lyme Disease as an actual diagnosis. Their guidelines for Lyme Disease are outdated and inaccurate, but sadly, they are the standards that are followed by the insurance companies. Until the guidelines are changed to except chronic Lyme Disease as an illness, they can continue to deny us treatment and harass those physicians willing to treat us. It’s a sad state of affairs I’m afraid. But we are loudly raising our voices for change!

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