Hypothyroidism & Sibo – A New Health Update

Hypothyroidism & Sibo – A New Health Update

Hey guys! As you know, I have been really, really unwell, and unfortunately, I just keep getting worse. I’ve been trying my hardest to get to the bottom of everything and be taken seriously by the doctors, which has been extremely challenging, but I think I have finally gotten to the bottom of everything!

For over a year now, my T4 levels have been just below the normal range, but my TSH has always been normal. Despite this, I have been gaining weight, as you know, and having all sorts of other symptoms like dry skin, my hair is falling out, extreme exhaustion to the point of staying in all of the time, and if I go out to run small errands, I have to take a nap in the evening. This is completely not normal! I have no energy at all! My muscles are really weak too, and my mood and depression are getting worse because of it.

Trying to relay this to my doctor hasn’t been easy. I wasn’t taken seriously, and I was told that those levels were not enough to get these symptoms, and I have to just ‘monitor them’. That’s it! Monitor it, while my symptoms get worse, and worse, to the point that they are now. Well, finally, my TSH has just tipped into the high range, while my T4 remains low.

People with Ehlers-Danlos Syndrome are super sensitive to hormonal changes, even slight ones, so I will feel these symptoms much worse than someone else at these levels. Even though mine are mild, my symptoms are full-blown, and Hypothyroidism is really common in Ehlers-Danlos Syndrome. It also runs in my family – two grandmothers and an aunt. I’ve also learned that even if your levels are normal, you can feel symptoms as everything is fluctuating, so you might not catch it on blood tests.

I gave these results to my GP two and a half weeks ago, but she said she needed to consult with the endocrinologist, who has always been so dismissive. This has been so stressful! Fast forward to now (two and a half weeks later), I finally got a response from him after countless emails, phone calls, chasing things up, and always being told no, you have to wait to hear from him, and no medication will be prescribed until then.

I was extremely unhopeful; however, he’s told me that I can start a trial of 50mcg of Levothyroxine to see if this helps my symptoms. Then I am to re-test my blood in 2 months to see if it’s working. I am still waiting for my doctor to give me this prescription, though. I can, without a doubt, tell you that this has been one of the worst times in my life. The exhaustion has been unbelievable, and I can’t do anything. It’s affecting my work life, my social life, everything… It’s utter misery, and I’ve been so unhappy. So, that’s my update on my Hypothyroidism.

Back in 2017, I was diagnosed with methane-producing SIBO, which is also common in Ehlers-Danlos Syndrome (and I just learned in Hypothyroidism, too), and I do believe I have it again. I had a similar flare-up of it in 2023, and was put on antibiotics then as well, but they didn’t seem to work as well as I don’t think I took a long enough course.

My stomach this time around has been the worst it’s ever been, though, since July 1st. My stool samples have all come back negative, but I do know it still could be an IBD, as calprotectin does not always show up in the test. Especially if it’s microscopic colitis, you need a biopsy, but that’s risky with my condition.

I mentioned not long ago that my stomach symptoms have been more than horrendous. I bloat up to the size of an elephant; it’s painful, uncomfortable, and causes me to have acid reflux. I get severe diarrhea (to those who find this gross, I apologise, but I always try and be real here) that burns me and happens multiple times a day. I can’t catch a break! I have malabsorption now as I just found out that I am B12 deficient, so my nutrients are not absorbing, which is also contributing to severe exhaustion.

My brain fog symptoms are also the worst they have ever been. I can be listening, but not taking in anything said to me. I forget things within seconds, I will leave things out of the fridge, I am making careless mistakes… mentally, I’m in a really bad place, and I feel extremely stupid, which is sad. But it’s hardly surprising if I’m depleted of nutrients and so exhausted from an underactive thyroid and SIBO.

I am now on a treatment course of Rifaxamin 3 x per day, plus Pepto Bismol 4 x per day, for two weeks. I’m hoping this will work! I do find the Pepto to be very uncomfortable in my stomach, though, so some days I’m not able to take it. I may have a sensitivity to it, but I’m trying to keep up with it. I will update you soon on how this treatment has gone.

So that I can maintain some level of consistency with my blog and Instagram, I am trying to do some shoots one day a week, on a day that I have saved up enough energy to do it, but in order to make this work, the backgrounds will look the same. I’ve decided to shoot the pictures in the same place each time to make it easier on myself for now, so it’s either that or no content, and I can’t keep skipping out on content.

I’m aware that this is my job, and some of you get disappointed by me not posting, and tell me my blog is dying, but the truth is, I am dying inside, and it’s a struggle just to function and exist. I have worn makeup about 3 times in 5 weeks, even washing my hair is hard… I’ve played this down a lot because I don’t like to look like I’m looking for attention, but I have to be real with you all, I’m not ok, but I’m not looking for sympathy, I’m just trying to update you on my situation.

I suffer migraines a lot, I get nerve-burning pains in my scalp, my arms, my lady parts… I have autonomic dysfunction, so my blood pressure plays up whenever it wants to. My joints and muscles ache all the time, and will sublux quite often. This is all part of living with Ehlers-Danlos Syndrome, but I just try and get on with it. I do not know what normal feels like, and I never get a day without some type of issue, but that’s ok. That’s a life I am used to. What I’m not used to is having all of this thrown on top and literally not having the energy to live. Existing is hard. I’m just functioning out of my house 95% of the time. This is because of extreme tiredness and because of my stomach issues, it’s way too risky most of the time.

I still suffer with my PCOS symptoms as well, but being on my birth control pill helps that a lot, so I’m not complaining about that. Even though my testosterone levels remain elevated and my prolactin fluctuates between high and normal, I’m doing ok with that side of things. I’m just hoping to start my Levothyroxine soon to sort my thyroid symptoms out, and hope the treatment of antibiotics and a sugar-free diet (SIBO feeds off of sugar) to kill off the bacteria. I’m taking a B12 supplement, which I hope works, and I’m trying to keep positive and focus on recovery.

Thank you for listening. I always feel like this is a community here, and I’m really grateful to have the followers that I do. You mean a lot to me, and I’m fortunate to have mostly supportive readers. I’m hoping this is the worst of it, and I will get better from here with the medication, but I also hope you will enjoy the content I am able to make, with the same background. Lots of love to all of you. If any of you are going through health struggles and want to leave a comment, please do! I want to support you, too.