This topic contains 17 replies, has 5 voices, and was last updated by  Jen Cueva 1 month, 2 weeks ago.

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  • #19446
     Colleen Steele 
    Keymaster

    I’m a caregiver, so I do not have PH but I do struggle with a thyroid condition. I was curious how common this disease coexists with pulmonary hypertension. In my research I’ve read that it’s rather prevalent in PH patients, more so than in any other pulmonary diseases. Hypothyroidism is the primary thyroid condition diagnosed in PH patients and the percentages of those with PH and thyroid disease seem to increase in woman over 60.

    PH News published a column in 2016 about hypothyroidism and it’s connection with PH.

    Hypothyroidism, a Thyroid Condition, Found in Almost Half of IPH Patients in Study

    Are you living with PH and a thyroid condition? Which were you diagnosed with first? Share your experience and advice for others who might have recently been diagnosed with both.

  • #19479
     Jen Cueva 
    Participant

    Great share, Colleen! Although you’re a caregiver, it appears like you have several health issues, too. I’m certain that this isn’t an easy task as you’ve had your son’s PH, transplant and now post-transplant to figure out. It sounds like you don’t have much time off from appointments.

    I have had problems with my thyroid on several occasions over the years. I’ve been on thyroid replacement hormones multiple times. After several years, the doctors take me off for a while. Hence, I’m usually on a low dose. It is time to recheck it, so I’ll have to see what my levels are next month. I’m wondering if that’s contributing to my hair falling out. I know it’s a symptom.I’m pretty sure it’s a combo of meds and other issues.

    I’m aware of several PHriends who deal with hypothyroidism with their PH. Great article, as I’ve heard it’s prevalent in PH patients.

    Are you on a “ maintenance “dose? How long have you been diagnosed? What are the worst symptoms from your hypothyroidism?

    • #19484
       Colleen Steele 
      Keymaster

      Jen, it is possible that your thyroid issues are contributing to your hair loss. I’ve heard that this is a very common symptom. I have a thick head of hair so it would take a while for me to really notice a chance but recently I started wondering if maybe I am having a problem. My youngest recently expressed his disgust that the tub drain was clogged with all of my hair. He asked if I’m shedding? Then I took a close look at my hairbrush and realized it had a lot more hair in it than usual.

      I was diagnosed a few years ago and placed on levothyroxine. It’s a low dose and my thyroid levels have actually been good the past few times I was tested, but whenever I stop the medication I start to feel sick. Fatigue is my worst symptom. That makes me feel bad for you and other PH patients who are also dealing with a thyroid condition. PH makes you tired enough, than you have another disease contributing to the symptom. That has to be difficult.

  • #19487
     Brittany Foster 
    Keymaster

    Fortunately, this is something that I do NOT have and have never been diagnosed with. But I DO have a lot of the symptoms and have been tested on many occasions to try to explain why my autonomic system was so all over the place and from one extreme to the other. I feel like that a lot. There is never a happy medium with me. It is either holding on to fluid or too dehydrated, feeling well or feeling extremely tired and run down, high blood pressure or low BP. Like I said, one extreme to the other so that’s why I have been tested for it. I really do feel for those that have both though, I can only imagine how one must impact the other greatly.

    • #19507
       Jen Cueva 
      Participant

      Hi Brittany, I’m glad to hear that you haven’t been diagnosed with thyroid disease. I hate to hear that you suffer from many of the symptoms. It’s frustrating to have those symptoms and no answers. I hope that you will get some relief from those fluctuations.

      • #19518
         Brittany Foster 
        Keymaster

        Me too, Jen. Fluctuations like that are really hard to manage especially because it just goes from one extreme to the other and doesn’t ever give me much of a break. I think a lot of the nervous system fluctuations have to do with all of my surgeries and some of the different medications I have had to be on too. It’s like my body starts adjusting to the medications and then they are gone or not needed anymore. My poor insides are probably so confused!

  • #19541
     Jen Cueva 
    Participant

    Brittany, I am sure that some of the fluctuations that you are experiencing could be linked to your recent surgeries. As you mention, the additional meds can take a toll on your body. I am sure hoping that with time, things will improve for you.

  • #19560
     Joanne Sperando 
    Participant

    I was diagnosed with hyperthyroidism (not hypo-) a few years after my PH diagnosis and my brother, who also had PH, had it too. Mine has been fairly well-controlled with tapazol but my brother had a thyroid storm after waiting too long when his doctor wanted to “kill” the thyroid and put him on replacement therapy. PH and thyroid dysfunction go together and I know the researchers are trying to figure out why. But if you suspect you have a thyroid issue, don’t wait. Talk to your doctor asap.

    • #19572
       Colleen Steele 
      Keymaster

      Thank you for sharing Joanne! My thyroid condition is fairly minor but the fatigue I experience is sometimes major. It was out of curiosity that I researched PH and thyroid together and was surprised to read the connection. A thyroid storm sounds really scary. I never heard of that or replacement therapy.

      I take Levothyroxine and it has helped. Sometimes my labs come back looking good and I’m told I could stop taking it. However, every time I stop taking it I start feeling fatigued and not myself, in a way that’s hard to explain. I’ve made the decision to never go off of it.

      I’m glad the tapazol works well for you but I am so sorry to hear about your brother! It was kind of you to share your experience. You never know who it might help.

    • #19577
       Jen Cueva 
      Participant

      Hi Joanne,
      I am sorry that you are dealing with an overactive thyroid(hyperthyroidism). I hope that the meds keep your levels and symptoms at bay.

      I am sorry to hear that your brother has experienced a thyroid storm. This can be scary, for sure. Are you referring to radiation of his thyroid and now he is on thyroid hormone replacements? Or did he require removal of his thyroid gland?

      I am glad to hear that you started medication for yours and hopefully will prevent a thyroid storm for you as well as other complications.

      I know that the hyperthyroidism causes heart issues and tachycardia ( or fast heart rate) as well as other symptoms relating to PH. This must be difficult for you to manage together.

      • #19615
         Brittany Foster 
        Keymaster

        Joanne,
        Like Jen said, it must be so hard for you to manage your symptoms especially if you aren’t sure what symptoms are related to what particular condition is causing it. That is always the hardest part about managing multiple conditions for me. If the symptoms are so close like racing heart, trouble sleeping, arrythmias, etc it just makes it more scary because it probably feels like you have to take on a lot of the responsibility to manage your symptoms and write them down!

        How exactly do you manage your symptoms and help to decipher what is causing them? I can imagine it is a lot of work and self reflection!

  • #19623
     Tamara 
    Participant

    If you are hypothyroid about to go on Uptravi, get your labs done before you start. Studies show 1% become hyperthyroid/increased results. It seemed there were alot more affected than 1% (to me) on the discussion boards. Since I was the 3% affected by CCB side-effects, I figured I would probably be affected as well with Uptravi! I was and it actually made my Vit D levels better! But it took 6 months to get level readings! This is after getting on maintenance dose…

    • #19638
       Colleen Steele 
      Keymaster

      Thank you so much Tamara, for sharing this important tip. It always makes me happy how we help each other through personal experience.

    • #19648
       Jen Cueva 
      Participant

      Hi Tamara,
      I am on Uptravi and have had issues with hypothyroidism. I am not currently taking any meds for it.

      Are you saying that Uptravi improved your Vitamin D? I’m curious as I have a vitamin D deficiency. Thank you for your tip and for sharing your experiences.

  • #19650
     Tamara 
    Participant

    I became Hypothyroid and then 3 months later developed PH symptoms. So knew I was Hypothyroid and regulated a decade easily before going on Uptravi. I was advising anyone that is Hypothyroid and actually Hyper, should get baseline tests, prior to going on Uptravi. Although my doc speaks on it, it’s such a low % of people affected, he wasn’t even aware of it! If I didn’t do my due diligence and read the fine print and go to discussions, my changes wouldn’t have been attributed to the actual cause! I worked in the sun for years in Hawaii and was showing a Vit D deficiency! I was on high doses for a very long time! Once going on Uptravi, I am lower and only take 5000iu’s once a day, instead of 10,000!

    • #19652
       Jen Cueva 
      Participant

      Oh wow, Tamara. It sounds that you had a lot to deal in just a few short months. I understood about the tip for the thyroid. Thank you for sharing.

      Hawaii sounds perfect!

      I haven’t had that improvement with my Vit D levels with Uptravi. But, our responses to these meds are so mixed. Maybe, I will see that improvement later on. I take 5,000iu / per day.

  • #19651
     Tamara 
    Participant

    Jen, if you are having thyroid issues even before or after, you should get some type of hormone replacement! If afects your heart among other things…..

    • #19653
       Jen Cueva 
      Participant

      Thanks, Tamara, my doctors had me on a low dosage, lowest actually. I was having an increase in my palpitations, so they decided to stop the med. I do have my labs checked every 3 months so that can monitor my levels.

      You are correct, it certainly affects the heart and so much more. Thank you for your concerns.

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