Hi everyone, thank you for reading this is a long post.
I am 20 and 134 pounds, and never had a history of any illnesses. I was always healthy. I could run Miles and I would never get headaches wasn’t on any medications. So back in October of 2017 I started frequently peeing like 7-8 times at night and almost peeing every half an hour during the day. Dr thought it was over active bladder. In February of 2018 I started feeling very light headed, I had palpitations, was so dizzy and felt sick, it all happened out of the blue after I laid down . I went to a stat care to find that my blood pressure was 164/118 with a heart rate of 150. EKG was abnormal, and I was sent to the ER. Er told me to follow up with a cardiologist. I then went to a cardiologist and saw a nurse practitioner who took my blood pressure which was high 180/100. She told me to exercise and to eat better and basically shrugged me off her shoulders. She said she would do an echo and she didn’t want to prescribe me medicine yet until I began to eat better (which was crazy to me because I am not overweight and was active already). Echo came back fine. I was feeling very upset I felt like no one was listening. I couldn’t get in with my family doctor at first because they wouldn’t classify me as “sick”. I walked around for a few weeks with a bp of 170/100, 150/110 ridiculously high numbers. I was a pharmacy tech at the time and I found that standing made my blood pressure even increase! Fast forward a few months into April 2018. I was referred to a kidney specialist. He did blood work and he came to this conclusion. I had very low potassium, very low renin, and very low aldosterone. He concluded it was a rare syndrome called Liddle syndrome. Now I have genetic testing scheduled in a few months to be 100% sure it’s liddle syndrome. I haven’t been able to speak with anyone that has it or had even heard of it really. Anyway fast forward a little bit he put me on amiloride and metoprolol succinate (excuse my spelling). Now let’s fast forward a bit more they worked okay at first brought my blood pressure down to 150/90, 140/95. However, a few months after it creeped back up again! I was then back were I started. High blood pressure at twenty years old! I called the office and they acted like I was a bother and treated me like I was a dumb kid to the point my mother had to call their office and tell them to plead help me. They put me on a 3rd medicine (Cardura) now it’s been a while since I’ve been in these medications. When all of a sudden I still cant exercise without getting a pounding headache and the feeling of passing out. My feet and hands are bright blue and purple. They are always cold to touch. On top of that, my headaches have increased so bad to the point of vomiting, I haven’t had a period in almost 4 months! And my eyelashes have started to fall out and my hair which has always been beautiful is starting to fall out in the shower to the point where I’m scared to brush it. Blood pressure is creeping back up into the 150s/95s.The kidney dr is so certain I have liddle syndrome he wouldn’t let me do a 24 hour urine. I’m not 100% convinced its liddle syndrome as far as my family and I know we have no history of it. Fast forward to last week I made a dr appt and I told the nurse practitioner all of these problems. No period which is so not normal for me I have never missed a period in my life was always so regular even when I was in high school or stressed it was regular. The headaches, the headaches won’t go away with Advil, Tylenol, aspirin. And the icing on the cake my hair is falling out along with my eyelashes, I asked her to please send me to an endocrinologist....... and she told me NO. She said no I don’t have enough evidence to see an endo. She would like me to see the cardiologist again. At this point I don’t know what to do. I don’t have all this money. I know I need to see an endo. Can anyone give advice. This has been going on for way too long. I’ve never felt so miserable. Anyone else have liddle syndrome ? I don’t know if this could be a pituitary issue or a thyroid issue? I had my free t4 drawn and it was low. My TSH drawn and it was in the normal lab range but was borderline low? Please if you have any information let me know. God bless xoxo.
Hi Blueskye - Wow! you have a lot going on there and no resolution, and for that I am sorry. Understanding that most of us on here are not medical, I do have a few questions / suggestions:
Where are you located? You indicate that you cannot afford all of this, so are you in the US or somewhere with no insurance? Or if you are in the UK, you have NHS, right?
It seems to me that most of what you are describing may be attributable to low thyroid. If you look at this website, you will see that it is talking about the blood pressure issue and how it can get so serious with low thyroid: stopthethyroidmadness.com/b...
Depending on where you reside and what you can do in terms of insurance, etc. it seems to me like it would be best for you to find another physician that will listen to you. OR make an appointment and take your mother with you to make certain they listen.
One thing we recommend is that you start a journal (you have a good beginning above and I would include all of that without any personal comments - just the fact ma'am =) ), and write down every day that something different or worse happens, or even if it is just more of the same. Then take that journal with you so the docs can see how severe the conditions are that you are dealing with. List your headache pain level from 0 - none to 10... the worst, most damaged / broken you can imagine.
I hope this helps a little. Please let us know where you go next with it
in reply to
Thank you so much for your reply. I am in the US and I’m on my parents insurance still. However, out of all the doctors I have seen they don’t know anything about liddle syndrome and they try and do these scans and mris and I can’t affford them. My last er visit for high blood pressure was $6,000 and I work partime and I’m a full time college student. I would like to go to an endocrinologist but I need a referal from my family doctors office. Which they won’t give me a referral to and endo because she thinks it could be maybe heart related. However, I kink my body very well and I feel like missing periods, hair falling out, headaches all could be due to thyroid, or hormones, pituitary gland, or even maybe even vitamins. I’ve been trying to do some research. Thank you for your help.
in reply to
I don't know anything about Liddle syndrome at all. It just seems to me that they make it really hard. I have been going to the same GP almost all of my adult life, and last December she decided that I make her nervous (logically actually - I have a boatload of things going on), and she threw me out into the medical community. I now have 6 new doctors and 7 new diagnoses with the medications to accompany them. It is very expensive and very frustrating.. I feel your pain, although I have insurance. Does your insurance require you to have a referral to an Endo? Mine does, so probably so.. I wish I had other options for you sweetheart.
Hi there, i am so sorry you're experiencing all this. Your symptoms, imo, do not point to a cardiac issue. They sound like an endocrine problem. Losing eyelashes, hair, heavy/missed periods point to your thyroid being involved. The BP elevation, palpitations, anxiety, blue/purple hands and feet can also be from something like a pheochromocytoma or pseudopheochromocytoma. I know yours is an old post, but I feel for you and I am hoping this problem has been solved and you've received a diagnosis. I don't know how it works in the US, but maybe a doctor at a walk in clinic might give you a referral. Emphasize you have a low T4 and secondary hypertension, are losing eyelashes and experiencing hair loss. Nobody in their right mind would listen to these symptoms and say you don't need to see an endo. I am really sorry to hear this.
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