This is the first in a series of Health Updates I will be posting. It's been so long since I've done one of these blog posts, and I have a lot to discuss! To be honest a lot has gone on but it was difficult to make sense of because as you'll see many different issues tied into one another. When I was in the midst of it all it felt like I was working on a giant tangled ball of yarn. I kept trying to find the first loose string to pull so I could begin to unravel the problems and fix them one by one. I pulled many of the wrong strings with trial and error before I started to find my way out.
One big long standing issue for me has been my thyroid. Many years ago I had a goiter on my thyroid and was diagnosed with cycling Hashimoto's and Graves Disease. I saw a specialist at the University of Louisville who understood complex cases and I trusted that he would know what to do. It really wasn't until a few years later that I realized this was not the case. I had my thyroid radiated (partially killed off), and was put on Synthroid (T4) but I never felt well on it. I kept telling him that I didn't feel right and he kept telling me I was fine because my lab work said I was fine. I trusted that, and told myself I guess I was wrong. This went on for quite some time until I realized the only lab marker he was drawing on me was the TSH level. He judged everything on that one number, and when it was "in range" he considered that case closed. I was furious when I realized how much had likely been missed, and not long after I fired him as my endocrinologist. As the years went on and I had more mysterious health issues (which I now know were Lyme related), my thyroid problems kind of went on the back burner. I got my levels as close to stable as possible, and even though they weren't perfect I felt like it was 'good enough' considering I had bigger fish to fry.
Fast forward in time, and within this last year my thyroid had come to the forefront yet again. My labs were very bizarre, with markers showing I was both Hypothyroid and Hyperthryoid at the exact same time. For example I had high Free T3 (showing hyperthyroid), yet also high TSH (showing hypothyroid). In fact my Free T3 was consistently elevated no matter what I did. There were other strange anomalies too with the Reverse T3 and T3 uptake. Nothing made sense, and I also felt pretty awful. I had symptoms of hypothyroid as well as symptoms of hyperthyroid, and anytime I tried to go up on my Synthroid I thought my heart might explode. No one could make any sense of it, and I was left in a limbo. Here is a sampling of some of my confusing blood work that I was dealing with.
One big long standing issue for me has been my thyroid. Many years ago I had a goiter on my thyroid and was diagnosed with cycling Hashimoto's and Graves Disease. I saw a specialist at the University of Louisville who understood complex cases and I trusted that he would know what to do. It really wasn't until a few years later that I realized this was not the case. I had my thyroid radiated (partially killed off), and was put on Synthroid (T4) but I never felt well on it. I kept telling him that I didn't feel right and he kept telling me I was fine because my lab work said I was fine. I trusted that, and told myself I guess I was wrong. This went on for quite some time until I realized the only lab marker he was drawing on me was the TSH level. He judged everything on that one number, and when it was "in range" he considered that case closed. I was furious when I realized how much had likely been missed, and not long after I fired him as my endocrinologist. As the years went on and I had more mysterious health issues (which I now know were Lyme related), my thyroid problems kind of went on the back burner. I got my levels as close to stable as possible, and even though they weren't perfect I felt like it was 'good enough' considering I had bigger fish to fry.
Fast forward in time, and within this last year my thyroid had come to the forefront yet again. My labs were very bizarre, with markers showing I was both Hypothyroid and Hyperthryoid at the exact same time. For example I had high Free T3 (showing hyperthyroid), yet also high TSH (showing hypothyroid). In fact my Free T3 was consistently elevated no matter what I did. There were other strange anomalies too with the Reverse T3 and T3 uptake. Nothing made sense, and I also felt pretty awful. I had symptoms of hypothyroid as well as symptoms of hyperthyroid, and anytime I tried to go up on my Synthroid I thought my heart might explode. No one could make any sense of it, and I was left in a limbo. Here is a sampling of some of my confusing blood work that I was dealing with.
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When you have Hashimoto's or other thyroid conditions there are certain nutrients that are necessary for the thyroid to function properly. These vitamins and minerals play a direct role in converting the T4 to useable T3 and helping the T3 to properly find its way to receptor sites. There are many different thyroid specific nutrients, but two big ones are Ferritin and Zinc. Zinc is connected to thyroid function in more than one way: if low, TSH will not be made and this will result in low levels of thyroid hormones T4 and T3. Zinc is also an essential part of an enzyme deiodinase, which converts T4 into a functional T3. If zinc is low or missing from the body, T3 cannot be made. Also, low zinc levels correlate with the increased levels of autoimmunity, as seen by high amounts of anti-thyroid antibodies (TPO and Tg) in thyroid patients - Boost thyroid. My zinc levels were very low; serum Zinc was 0.49 (range 0.66-1.0), and stayed low despite supplementing it heavily. Nothing seemed to make a dent, and I had chronically low Zinc for years on end, so I knew that was playing a big role. Moving on to Ferritin: low ferritin can cause the T3 to not get into the cells, and raise Reverse T3, can decrease deiodinase activity (slow down conversion of T4 to T3, can affect the first two or three steps of thyroid hormone synthesis by reducing the activity of the thyroid peroxidase enzyme, and can affect the body's ability to break down thyroid hormones for use. My Ferritin level was also very low; 4.9 (range 11-300). I also supplemented Iron orally and transdermally with little to no luck in raising my levels.
This is when I hit a wall. I had spent months trying to fix these deficiencies in hopes that it would resolve the chaos of my thyroid to no avail. Around this time I also started to become sort of intolerant to my Synthroid. When I would take my usual dose I felt awful, so I had to cut back on it. Cutting it back made me more hypothyroid, but it felt like a better alternative than the awful hyperthyroid symptoms I got when taking more Synthroid. Everything was a mess. So, when I got the opportunity to take my case to a world-renowned Endocrinologist I was elated. I felt like someone would finally take my complex case and help make sense of it. Well... that's not quite what happened. His suggestion? Remove my thyroid all together. Yup... ill spare you my thoughts on his suggestion.
So here I was, feeling pretty hopeless and lost. I got to searching far and wide for another Endocrinologist, and I knew I needed an Integrative physician who would take a look at me as whole and help me understand what to do. Finally I found one, and she helped me make sense of all of my chaotic lab work. She said that I did not have a conversion issue, meaning that the T4 is properly converting to T3, however the T3 is unable to get into my cells which is why I have such high Free T3 levels. If you recall, low Ferritin levels can create this very problem, however I couldn't raise those levels, so we tried another approach. Dr. E wanted to switch me off of Synthroid and so first I tried a desiccated thyroid, but I had an allergic reaction to that. Next we tried a pure compounded T4 and that did not agree with my body what so ever (heart palpitations, racing heart, sweats). Then we decided to go back to Synthroid and try introducing pure T3 little by little. It took a few weeks to find the right formulation of T3, but once we found it I started taking a low dose twice a day. I know it seems counter intuitive that if I have high Free T3 in circulation already, why would I want more T3 right? I asked this same question and Dr. E said that similar patients responded well to pure T3 in this form better than the T3 that had to be converted from Synthroid. So, I gave it a shot. At first it went okay, but was never able to raise my dose up to anything that would be useful, because every time I tried I would have more strange symptoms and heart trouble. I would later learn that patients with low Ferritin do not tolerate T3 only medications, and that seemed to be my problem. After a solid 5 months working with Dr. E and trying many variations of things (many I didn't even list here), we were no closer to a solution. In the mean time I was feeling worse and worse, with a TSH level so high it wasn't even able to be measured by the in house lab.
Around this time you might be wondering why I have such stubbornly low Ferritin and Zinc. I was wondering the same thing. Where was all my Ferritin and Zinc going? How is my body using it up so quickly that I was always depleted? I had many other nutritional deficiencies with this same problem, and I didn't seem to have an answer for a long time. That is, until I learned that birth control chronically robs the body of both Ferritin and Zinc. And well, I had been on birth control for the last 11 years. I suddenly started learning about all the awful things birth control does to the body, including robbing it of B-vitamins and clogging up receptor sites on cells so that the needed T3 can't attach to them. When we sat down and mapped out all the areas that my body was struggling, birth control was the culprit in pretty much every single place. I was put on the patch (Zulane), which is a much higher dose birth control, in 2007. At the time I was given it because my periods were atrocious. I was missing work and school while in college, and I couldn't function for a week every month. I had a lot of other health problems going on too, and being put on birth control was an easy fix. It took one trouble off the table so that at least I didn't have to worry about chaotic periods. After that I just stayed on it because later on I was too sick to stop and risk going back to those horrific periods. I liked that my hormones were consistently balanced, and I didn't think too much about it.
I will have an entire separate post talking about going off of Birth control after 11 years, how that went, what it did to my body, etc. But for now, I'll just tell you that this year I finally took the plunge and stopped cold turkey. I was dreading it, because if you read about people stopping birth control after long periods of time the stories you'll find are not very uplifting. It is a rough road while the body adjusts, and its rough even for people who are otherwise totally healthy. Knowing that I had so many other things going on with my body and that it could be a complete nightmare totally freaked me out. But it freaked me out more to stay on it after I knew all the chaos it was causing in my body.
Since stopping the birth control a lot has changed, and I'll go over all my test results in detail below. Physically the edema and puffiness I've had around my face for years is slowly disappearing, my skin is less chronically dry, and I can feel the deep painful fatigue lifting a bit. I'm sure as time goes on I will notice other details that were all linked to this hormonal mess improve as well.
I share my story so in depth because what happened to me is not uncommon in the world of chronic illness. When you have a chronic illness of any kind it puts a huge strain on the body. The stress can often wear down the adrenal glands and many people don't even realize that their thyroid is taking a beating as well. Low thyroid levels can cause a laundry list of symptoms and make it much tougher for the body to recover or bounce back from day to day stress. And that's not to mention that Hashimoto's cases are on the rise as well. It is so important to check-in on your thyroid health, because truthfully a lot of Doctor's don't think to do so. I can personally attest to this, as my thyroid health was often pushed to the side and deemed as 'not super important' when in reality it was incredibly important. You have no idea just how much work the thyroid does until you realize that every single part of the body requires thyroid hormones to function.
This is when I hit a wall. I had spent months trying to fix these deficiencies in hopes that it would resolve the chaos of my thyroid to no avail. Around this time I also started to become sort of intolerant to my Synthroid. When I would take my usual dose I felt awful, so I had to cut back on it. Cutting it back made me more hypothyroid, but it felt like a better alternative than the awful hyperthyroid symptoms I got when taking more Synthroid. Everything was a mess. So, when I got the opportunity to take my case to a world-renowned Endocrinologist I was elated. I felt like someone would finally take my complex case and help make sense of it. Well... that's not quite what happened. His suggestion? Remove my thyroid all together. Yup... ill spare you my thoughts on his suggestion.
So here I was, feeling pretty hopeless and lost. I got to searching far and wide for another Endocrinologist, and I knew I needed an Integrative physician who would take a look at me as whole and help me understand what to do. Finally I found one, and she helped me make sense of all of my chaotic lab work. She said that I did not have a conversion issue, meaning that the T4 is properly converting to T3, however the T3 is unable to get into my cells which is why I have such high Free T3 levels. If you recall, low Ferritin levels can create this very problem, however I couldn't raise those levels, so we tried another approach. Dr. E wanted to switch me off of Synthroid and so first I tried a desiccated thyroid, but I had an allergic reaction to that. Next we tried a pure compounded T4 and that did not agree with my body what so ever (heart palpitations, racing heart, sweats). Then we decided to go back to Synthroid and try introducing pure T3 little by little. It took a few weeks to find the right formulation of T3, but once we found it I started taking a low dose twice a day. I know it seems counter intuitive that if I have high Free T3 in circulation already, why would I want more T3 right? I asked this same question and Dr. E said that similar patients responded well to pure T3 in this form better than the T3 that had to be converted from Synthroid. So, I gave it a shot. At first it went okay, but was never able to raise my dose up to anything that would be useful, because every time I tried I would have more strange symptoms and heart trouble. I would later learn that patients with low Ferritin do not tolerate T3 only medications, and that seemed to be my problem. After a solid 5 months working with Dr. E and trying many variations of things (many I didn't even list here), we were no closer to a solution. In the mean time I was feeling worse and worse, with a TSH level so high it wasn't even able to be measured by the in house lab.
Around this time you might be wondering why I have such stubbornly low Ferritin and Zinc. I was wondering the same thing. Where was all my Ferritin and Zinc going? How is my body using it up so quickly that I was always depleted? I had many other nutritional deficiencies with this same problem, and I didn't seem to have an answer for a long time. That is, until I learned that birth control chronically robs the body of both Ferritin and Zinc. And well, I had been on birth control for the last 11 years. I suddenly started learning about all the awful things birth control does to the body, including robbing it of B-vitamins and clogging up receptor sites on cells so that the needed T3 can't attach to them. When we sat down and mapped out all the areas that my body was struggling, birth control was the culprit in pretty much every single place. I was put on the patch (Zulane), which is a much higher dose birth control, in 2007. At the time I was given it because my periods were atrocious. I was missing work and school while in college, and I couldn't function for a week every month. I had a lot of other health problems going on too, and being put on birth control was an easy fix. It took one trouble off the table so that at least I didn't have to worry about chaotic periods. After that I just stayed on it because later on I was too sick to stop and risk going back to those horrific periods. I liked that my hormones were consistently balanced, and I didn't think too much about it.
I will have an entire separate post talking about going off of Birth control after 11 years, how that went, what it did to my body, etc. But for now, I'll just tell you that this year I finally took the plunge and stopped cold turkey. I was dreading it, because if you read about people stopping birth control after long periods of time the stories you'll find are not very uplifting. It is a rough road while the body adjusts, and its rough even for people who are otherwise totally healthy. Knowing that I had so many other things going on with my body and that it could be a complete nightmare totally freaked me out. But it freaked me out more to stay on it after I knew all the chaos it was causing in my body.
Since stopping the birth control a lot has changed, and I'll go over all my test results in detail below. Physically the edema and puffiness I've had around my face for years is slowly disappearing, my skin is less chronically dry, and I can feel the deep painful fatigue lifting a bit. I'm sure as time goes on I will notice other details that were all linked to this hormonal mess improve as well.
I share my story so in depth because what happened to me is not uncommon in the world of chronic illness. When you have a chronic illness of any kind it puts a huge strain on the body. The stress can often wear down the adrenal glands and many people don't even realize that their thyroid is taking a beating as well. Low thyroid levels can cause a laundry list of symptoms and make it much tougher for the body to recover or bounce back from day to day stress. And that's not to mention that Hashimoto's cases are on the rise as well. It is so important to check-in on your thyroid health, because truthfully a lot of Doctor's don't think to do so. I can personally attest to this, as my thyroid health was often pushed to the side and deemed as 'not super important' when in reality it was incredibly important. You have no idea just how much work the thyroid does until you realize that every single part of the body requires thyroid hormones to function.
Thyroid Testing... What's Changed?
One of the most frustrating things about thyroid problems is that it requires a ton of lab work and a ton of blood draws. When I was first diagnosed with Hashimoto's and we were trying to find the right dose of Synthroid I had to get my blood drawn every other week. Then it changed to monthly, then bi-monthly. But I have never gone longer than that in between testing. This last year with all the hoopla going on I had to get even more frequent testing. It's really important to see the changes happening with thyroid levels and to monitor it over time. Having it charted is also very useful, and can help provide a clearer picture. Furthermore, if you are changing things up (new meds, new dose, new supplements etc), its even more crucial to keep an eye on what that is doing to the thyroid markers. Even though its necessary my veins do not love it.
I recently learned about a company called Paloma Health who specializes in all things thyroid, and they offer at home thryoid testing via a finger prick. I was obviously very intrigued right off the bat, because the thought of not having to go through all the work of getting blood drawn was music to my ears. Furthermore I thought it would be useful for others who read my blog that might be in the same boat. So I decided to test it out for myself and document it all in case anyone else is interested. The kit tests TSH, Free T4, Free T4, and TPO antibodies (to check for Hashimoto's). They also offer a Doctor consultation via video for $9 more, so if you want to have a board-certified Doctor on board to review your results, create a custom treatment plan, ask questions to, and prescribe you medication they can do all of that! Thats what, in my opinion, really sets them apart. It's all very impressive, and at a $90 price point it's also incredibly affordable. I easily pay that much (even with insurance), each time I get my blood drawn at the lab. Furthermore, you can also still turn this into your insurance for reimbursement, and it is HSA/FSA eligible. All of the labs who handle the testing for Paloma are CLIA-certified and accredited or enrolled with the College of American Pathologists. Their results have been thoroughly tested to have >95-99% correlation, so this is a company you can trust for accuracy. Those were all really important details to me, so I also wanted to make sure and highlight it. You can get a kit in 46 states (NY, NJ, Maryland, & Rhode Island aren't included due to state laws).
I asked Paloma for a coupon code to share with you all and they gave me one for 50% off - ladyoflyme4paloma (case sensitive). I don't get anything if you use that code, meaning I don't make any money, it's not an affiliate code, I don't get money off my own kits etc. It's purely a 50% off code given generously by Paloma Health for you or anyone you know if you decide to try it out.
I recently learned about a company called Paloma Health who specializes in all things thyroid, and they offer at home thryoid testing via a finger prick. I was obviously very intrigued right off the bat, because the thought of not having to go through all the work of getting blood drawn was music to my ears. Furthermore I thought it would be useful for others who read my blog that might be in the same boat. So I decided to test it out for myself and document it all in case anyone else is interested. The kit tests TSH, Free T4, Free T4, and TPO antibodies (to check for Hashimoto's). They also offer a Doctor consultation via video for $9 more, so if you want to have a board-certified Doctor on board to review your results, create a custom treatment plan, ask questions to, and prescribe you medication they can do all of that! Thats what, in my opinion, really sets them apart. It's all very impressive, and at a $90 price point it's also incredibly affordable. I easily pay that much (even with insurance), each time I get my blood drawn at the lab. Furthermore, you can also still turn this into your insurance for reimbursement, and it is HSA/FSA eligible. All of the labs who handle the testing for Paloma are CLIA-certified and accredited or enrolled with the College of American Pathologists. Their results have been thoroughly tested to have >95-99% correlation, so this is a company you can trust for accuracy. Those were all really important details to me, so I also wanted to make sure and highlight it. You can get a kit in 46 states (NY, NJ, Maryland, & Rhode Island aren't included due to state laws).
I asked Paloma for a coupon code to share with you all and they gave me one for 50% off - ladyoflyme4paloma (case sensitive). I don't get anything if you use that code, meaning I don't make any money, it's not an affiliate code, I don't get money off my own kits etc. It's purely a 50% off code given generously by Paloma Health for you or anyone you know if you decide to try it out.
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The kit arrived on a Thursday and I did my test that same day. I opened up the box, and everything I needed was inside. It came with two finger lancets, gauze, bandaids, alcohol wipes, instructions, and the test pad. The process was incredibly simple and took me a total of 5 minutes. I pricked my finger and collected blood inside the 5 circles on the white pad. After that I popped it in the pre-paid envelope and sent it off the next day. I thought back to all the times I sat in a phlebotomy room getting stuck 5-6 times while they tried to find a vein, all to test these exact same markers. And boy oh boy did I wish Paloma Health existed back then because wow. The ease of it honestly already had me sold. My results were back exactly one week from the time I sent it off, and I sent it off on a Friday. It probably would have been even quicker if I didn't ship it on a weekend, but that is still an incredibly fast turn around time. My results are below.
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As you can see my TSH, Free T3, Free T4 have all normalized since being off of my birth control for quite a few months, which is consistent with my past lab work. The only thing that hasn't improved is my TPO, which is pretty elevated. My autoimmune conditions have been on the fritz lately, and that includes the Hashimoto's. I love that their dashboard explains your results, what they mean, and how it affects body etc. That is incredibly helpful, since most standard lab results only give you a number and call it a day. Since Paloma has board-certified physicians who order and review each test I received a phone call the next day to discuss my elevated TPO. This was a really nice unexpected touch, and it was a much more personal experience than I've ever had from thyroid testing before. I could tell that they really cared and wanted to offer help or guidance. They are more than just a basic at home testing company, they really are an end-to-end online medical practice with specialized thyroid doctors and nutritionists on board to assist every step of the way. They even have a nutritionist who can help you manage your thyroid health via diet and lifestyle changes. I wish they existed back when I was diagnosed and had some pretty awful experiences with Endocrinologists, but I'm glad I found them now!
I actually had some lab work done yesterday (checking other things), and I requested that my thyroid markers be checked as well for the purpose of this post. I wanted to show you all how they match up for anyone who might be curious.
I actually had some lab work done yesterday (checking other things), and I requested that my thyroid markers be checked as well for the purpose of this post. I wanted to show you all how they match up for anyone who might be curious.
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That's all for Part 1 of this Health Update, I will have the next parts in the coming weeks. I can safely say that for the first time I feel like I'm headed in the right direction with my thyroid, and it's been such a huge relief. My next steps will be working on lowering that TPO (Thyroperoxidase) number, because it's just recently became an issue for me after years of it staying in the normal range. I'll keep this blog posted on how things change with that as well!
If you want to read Part 2 of my update on hormones, continue reading here
xoxo,
Christina
If you want to read Part 2 of my update on hormones, continue reading here
xoxo,
Christina
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