15 Feb

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- Jennifer @KetosisMom

Jen @KetosisMom

Let's get straight to it for my impatient people:

For those that do not care to read the blog and how I came to this decision HERE is $25 towards your subscription in addition to a free first month after completing the WW Clinic qualification quiz 

Now for everyone else that wants the FULL scoop. 

For the past year and a half I have been going through all kinds of testing to figure out why my weight keeps going up, despite how I eat.

If you follow me then you know I had lost 85 lbs+ following a ketogenic diet, and then it all started slowly coming back, despite still eating low carb and keto. Here is some background for you all - I lost 65 lbs after my first pregnancy. Ate keto during my entire 2nd pregnancy hoping I would not gain much weight, and I gained close to 90 lbs during my 2nd pregnancy. I also left the hospital 55+ lbs lighter from just fluid and baby. After my 2nd pregnancy I lost 85+ lbs through low carb and peloton work outs. Then in 2022, (3 years after my 2nd was born) I was diagnosed with an autoimmune disease. Axial spondylarthritis with ankylosing spondylitis (AS).  

In Aug 2022, my endocrinologist told me that I needed to stop eating ketogenic because she felt that the high fat was what was causing my weight to go up, due to it causing insulin resistance. She explained to me that excess fat in my diet could be blocking glucose from properly being used as energy. But instead making it stay in my bloodstream, therefore raising my blood glucose levels and my insulin levels going up.  I looked more into this and I had a hard time finding studies on this. But I took her word for it. My Rheumatologist took me down a path of Humira, Enbrel, and then landing on Cosentyx injections for my AS. 

Humira I had 6 months of infections, with 8 different antibiotics and steroids each time. Enbrel I had a horrible under the skin reaction to. My skin where injected would turn purplish gray. And it did not go away for over a year or more. I may even still have some subdermal discoloration on my right arm. The Enbrel also made me feel like I had been hit by a truck the day after injection. Which by the way, none of the clinical trials will tell you any of this. I 100% recommend joining facebook groups for whatever autoimmune disease you have and ask the people actually taking these things all the questions. It is the only way (in the United States) to get real feedback on how a drug is performing. These groups is where I found out from everyone else taking cosentyx, told me that after they gained between 25 - 40 lbs their rheumatologist took them off the drug and switched them to something new. They then also started telling me how they were also placed on ozempic, wegozy, mounjaro, zepbound, etc. to try and help them manage their weight. It seemed crazy to me that no one is studying the weight gain effect of these autoimmune treatments, but instead just prescribing more drugs to try and combat it. 

So now things are all starting to add up a little. In 2022 I was taken off my hypothyroidism drugs because the same insulin resistance warning Doctor  said she felt I may not need to be on them either. A lot of my doctors were blaming the  removal of thyroid supplementation as why I was gaining weight (and not the cosentyx). But in reality my thyroid levels (T3, T4, and TSH) are better off the medicine, not to mention my energy, not sweating profusely everywhere I go regardless of the temperature, and the tingling in my hands and feet went away. I never thought the thyroid medicines did anything for me anyway but cause more issues. 

I also sought out a GYN opinion on this all because it did all seem to start happening postpartum. Which in the US we need to start having women tested for rheumatoid issues postpartum. I have found a large group of women who are all reporting that they are diagnosed with some type of autoimmune issue after having children. But I digress. You're all really here for "how do I get to the GLP-1?" 

For the past year and a half I have had an endocrinologist, a GYN, a GI specialist, a rheumatologist, and an internal medicine doctor watching my weight just keep going up every single month. The cosentyx helps me not have pounding joints and I can function so I am hesitant to come off of that because it does help me despite what I believe to be constant weight gain. My rheumatologist said he does not know how it would cause weight gain and "nothing is noted in the clinical trial results". He fails to remember I used to work in pharmaceutical manufacturing and my husband has worked in cell, gene, research, and IGIV therapies and clinical trials his entire carrier. A weight GAIN study is not going to be supported or even looked into by any company that would potentially deter customers from using their medication. And well the FDA is usually a bunch of retiree aged people who do not even want to be there nor do they even know what they are looking at half the time when it comes to pharmaceuticals. So let's move on into why I am going to be trying GLP-1 medication. 

After a year and a half I have tried carb cycling, carnivore, intermittent fasting, and yes even vegan. When I tried vegetarian (I was still having dairy but did not eat any meat) my GI discovered I have SIBO (small intestinal bacterial overgrowth). Of which if you view a FODMAP at any given time, you will see all those vegetables were causing my entire body to bloat and it was basically just feeding the bacteria in my gut. So now I eat foods and immediately test myself with a food marble monitor to determine if that food causes my body to produce excess hydrogen and methane (bloat). I have a very small range of food I can eat that does not cause issues. Chicken, fish, pineapple, strawberries, potatoes, green beans, protein powder, and tea are the only things I have tested low on my monitor with so far. So my eating habits are already limited. And my weight still goes UP. So I have agreed with my endocrinologist to try the GLP-1 mediations to see if it does anything. I will say I am not super hopeful, because I do not "over eat" and I am very good at controlling what and when I do eat. Nonetheless I agreed to see what if anything this would do. 

Now we get into why I chose weight watches clinical program (called Sequence) over going through my doctor office, here where I live. First of all when you submit for these drugs you have to submit them with a prior authorization (PA) to the insurance companies. My endocrinologist office took me 6 months to get in for the initial appointment. And my follow ups are only every 4+ months. The staff does not follow up on portal messages and do not return phone calls. At the end of January 2024 I was told I would be place on tirzepatide (now the weightloss version of mounjaro that is for type 2 diabetes is it named Zepbound). I applied for the savings card here direct through the Lilly website. I waited until the end of February and after 10 portal messages and multiple office calls letting them know that I had called CVS caremark and asked why my Prior authorization was denied for this medicine when I know that my BMI more than meets the requirements for this, they told me the office did not send in my BMI the first time. Then the 2nd time they did not send in a chart with my name and medical notes of my BMI that matched the PA that they sent. I started thinking to myself "ok, do I really want to go through treatment with an office that will not even answer calls or portal messages?". So I started looking around for what virtual services were available. I am a mom of 2, I hate having to try and work out getting into a Dr office around when kids will be in school and even worse when the Dr office is behind and then you have to call your spouse to go get kids because you are still sitting there just waiting. I know you all feel me here. I used to work in the top cancer treatment center in the world, and did time studies on the physicians and patient wait times. So waiting in any doctor office just pisses me off. 

So today, yes today 3+ weeks after I was told I would be placed on tirzepatide. I took all of my documentation from my doctors office, my labs, my chart information, and I submitted it all via the weight watches clinic to see how that went. I submitted everything last night and had an appointment with a doctor at 10 am today. It was THAT quick. She reviewed all of my lab results with me, discussed all the weight gain. I even sent in my chart showing my weight and how it has gone up over the past year and a half. Just so you all know, you will need your CMP, Lipid panel, any Thyroid testing, your A1C, and your weight to upload for review. If you do not have those things, that is ok, they will work with you on what they need to move forward. 

We discussed my GI issues and I also sent in the notes from my GI specialist that said she felt the weight loss benefit would be worth any type of GI issues we would need to manage and she is going to continue working with me on those things. I do take linzess for constipation right now. So I will be interested to see how this goes.  At the end of my call, she told me the care team would be submitting for me to get coverage for Zepbound. They have a whole team that knows exactly how and what needs to be submitted to get the approvals and the lowest possible cost on your end. When I heard that it immediately melted my anger away from my office staff that had been like talking to a foot. One would think they would know the PA has to match the medical chart, but again, that is my own assuming that people know how to do their jobs that is my flaw.

We went through all the side effects, what to look for, how to ensure I am working out so I am not losing a lot of muscle with my weight loss. She told me in clinical trials most people lost 20% of their body weight but that her patients were losing between 20 and 32% of their body mass. So with that we talked about the importance of protein and ensuring you are getting enough to help combat the loss of muscle mass. We also discussed how high fat and high sugar foods will make you nauseated and these drugs basically teach you to not eat those things. SO! What I have learned is I am eating my fish, chicken, and berries with some occasion green beans (like I already eat) and adding protein powder in coffee and shakes I make. This should not be a big difference for me in my normal habits other than I need to make sure I am working out more. I will do an updated post in a few months to let you know how this little experiment went. I do know that if you get pancreatitis with these drugs you have to come off them and cannot ever go back on them again. So let's not hope for that or the gastroparesis that a lot of patient are experiencing as well. My hopes are my GI specialist knows I am doing this, supports it, and can help me if I do become constipated or have another SIBO flare up. You will also need an internist or GI specialist to prescribe you a nausea medicine (like zofran) if needed. The weight watches clinic - sequence Doctor today did tell me that they will on occasion prescribe this for extreme cases but they like for the patients primary care or GI prescriber to take care of this separately.  

I will come back in a few days and note how long it took to get this prescription via the weight watchers clinic program, known as Sequence. I will note what dosage they started me on, how much it is costing me, and any additional notes that my audience may find interesting. I am an Aetna insurance and CVS Caremark customer for reference. 

Updates: I was prescribed and received my tirzepatide prescription 1 week exactly from my initial virtual Dr visit. It cost me $25/month with the savings card. 

I am giving weekly updates on videos on my YouTube channel!

- Jen @ketosismom

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