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Everything posted by dizzytizzy

  1. Hey everyone, I had an extensive workup with endocrinology recently and received my results yesterday. I have Hashimoto's and we knew that my thyroid function would be off and a dosage adjustment would be required. However, what I was not expecting was that my IGF-1 was extremely low, about 1/3 of what it should be for my age. The endo called it a severe human growth hormone deficiency. He also performed QSART testing and said I had some neuropathy in hands and feet, which he thinks may clear up once we get thyroid dialed back in. My hands/feet are eternally freezing right now. I have to go back in two weeks and do a stim test called an insulin tolerance test to confirm a true deficiency. He asked if I ever had a severe head injury like a concussion. I have not. From my research, I know one of the other primary possibilities of adult-onset growth hormone deficiency can be a pituitary tumor. He's the type of doc who takes things one step at a time and doesn't want to speculate about causes until we get the stim test done. He did say that this may be a contributing factor to the unrelenting fatigue I've had for a decade+. Anyone have experience with IGF-1 and/or pituitary issues/tumors, etc?
  2. @bombsh3ll: I've tried the salt in the water trick before and I just couldn't stomach it. Much easy for me to add pink salt to my food versus try to chug down saltwater. Gives me the heebie jeebies just thinking about it 🤢 That's exactly how I feel. Like I lose the water each night and then the whole thing has to start over again each morning. I've noticed that throughout the day I get more and more bloated (i.e. pants tighter), but after peeing overnight a bunch of times, the bloating disappears by morning.
  3. @StayAtHomeMom: Yes! My salt was always on the low end of normal when measured and I was worried that it would spike too high once the EP put me on the high salt diet, but it has stayed in range, sometimes higher and sometimes lower in the range. He did tell me that I needed to eat a high potassium diet along with it as I think it helps to maintain the appropriate balance.
  4. @yogini: Gotcha. Thanks for the info. I think I (and we all do probably) get so excited when we have a period of improvement and that can lead to overzealousness and put us back to square one if we make changes prematurely. I'll stick with the treatments while I'm working on some of the other lifestyle improvements. I have a follow-up with the EP in late October. If I remain relatively symptomatic through then, maybe a trial of easing up on some of the meds/fluid/salt might be on table.
  5. @Nan: Did you switch to that diet after diagnosis or were you on it prior to? I had been following a low-salt/no added salt diet for about six months prior to my symptoms and eventual diagnosis. However, I was also hardly drinking any water at all for a full year preceding getting sick. I mean like less than 8 ounces a day. I just never drank anything! So I'm wondering if I wasn't actually largely dehydrated when symptoms came on. My EP latched onto the fact that I had been eating a low-salt diet as he said that many people end up coming to him with dysautonomia symptoms after following that type of diet.
  6. @MomtoGiuliana: I'm hoping to get to the "as needed" basis that you use. I've consistently improved since April of this year, but have really stabilized quite a bit over the past two weeks. I'm working on some other lifestyle/mental/emotional changes that I feel have been helpful and am considering pulling back on some of these other measures - one at a time! - to see if I can eliminate anything.
  7. @yogini: I've been doing the salt/water dance consistently since March. While I've made strides, I'm unfortunately not sure if it's attributable to the salt/water or perhaps med or lifestyle changes. I'm considering doing a trial where I drop salt intake down to more normal levels and see how I feel. But then I get scared to change the routine. Argh! Drives me nuts
  8. @StayAtHomeMom: I've been somewhat obsessively tracking salt consumption. I don't feel like I'm necessarily in tune enough with my body to know when I need more salt vs something like more water, know what I mean? So I've just been staying in the guidelines the EP gave me. Hoping I can get to the point where I don't feel the need to track it.
  9. @WinterSown: Yeah, that's why I haven't ever tried the salt pills/sticks. I've heard way too much about them being hard on the stomach and also people not absorbing them properly. Plus, I'm trying to do things as holistically as possible and get the nutrients I need from food as opposed to pills. I just sometimes wonder about the efficacy of increasing salt loads so much. As the months have droned on, I feel really puffy and my stomach is distended.
  10. @statesof: Thanks for chiming in! I fully expect responses to be across the board on this one I am thinking about trialing a period without such high salt levels. I'm a bit skeptical about the low blood volume diagnosis my EP has slapped on me as there hasn't been any testing to actually confirm that.
  11. Hi all, I know the standard advice for POTS and certain types of dysautonomia is to increase both fluids and salt intake. Is there anyone here who isn't doing loads of extra salt and having good results? I never ate a high salt diet before all this and now try to ingest my salts via pink salt sprinkled on food versus salt pills or processed foods. I feel like the increased fluids and salt combo is causing fluid retention in my abdomen which is really uncomfortable....then I feel miserable when trying to exercise because I'm literally SO full of fluid shaking around in my stomach. It just seems like the recommended salt intake (and sometimes even the water intake) is often excessive and I'm wondering how much difference if has made for people or if the exercise, meds, and lifestyle changes have been more beneficial?
  12. Oh interesting @Pistol. It just reconfirms how individualized all of our treatment plans need to be. I'll keep that in mind as we proceed with changing up these meds.
  13. @WarpedTrekker: I take orthostatics every day. My EP has me lay down for at least 5 minutes, take BP and HR. Then stand and wait two minutes, then take BP and HR. I take BP and HR one last time after standing for 5 minutes. I think a jump immediately upon standing is "normal" and an increase of up to 10 bpm or so after standing for two minutes is within normal limits. A more exaggerated response could indicate dehydration or blood pooling as the heart works harder to oxygenate the peripheral areas of the body. It has to be a sustained increase of 30+ bpm in HR to qualify as POTS though I believe. So while your immediate jump may be exaggerated, the body seems to correct itself and the results are normal. 1. Did the ER give you fluids before taking those vitals? That could skew results. 2. Have you been checked for inner ear issues by an ENT? That could explain dizzy symptoms you get from positional changes. 3. Doesn't AFIB cause wacky HR too? Not saying you can't have both AFIB and dysautonomia, but I thought the former caused widely-varying bpm that bring about a slew of symptoms. Is the AFIB well-controlled?
  14. @Pistol: Appreciate the info. Still waiting to hear back from EP. Months ago when I first became symptomatic, he put me on the calcium channel blocker diltiazem - I believe he thought I was over constricting initially. I had terribly cold hands and feet all the time, possibly a sign of Raynauds maybe. I still had nighttime tachy episodes on that so that's when he switched me to midodrine, which seemed to work better and eliminate some of the daytime tremor feelings when I increased the dosage, but nighttime tachy remained. That's when the beta blocker discussion came up again and here we are in all its glory I've been to two rheumatologists and never been diagnosed with Raynauds. Maybe I'll have to ask specifically about that again.
  15. @StayAtHomeMom: Sounds like a horrific day for your doc! Oh my. I agree with her that a beta blocker can definitely ramp up fatigue, especially at higher dosages. But everyone has an opinion as we all find out
  16. @DizzyGirls: Thanks for detailing out the IIH symptoms. I tend to get a lot of intense, uncomfortable head pressure when lying down too, so you've given me something to bring up to my doctors! I also wanted to say that the "racing" feeling she has...is it more like internal trembling? Like she's running on pure adrenaline? I get that often and my EP said it was due to transient drops in BP as well as probably high amounts of norepinephrine in the body. Never had an actual blood test to confirm it though, so who knows.
  17. @Weary: Yeah, I was surprised at how well I was tolerating it initially as I'm very sensitive to meds. Only a little lightheadedness (while lying down) the first night of the 10mg and then nothing much with the increase to 20mg until about four days in and the dizzy spells started up. I was ready to declare success because it had helped the nighttime rushes so much, but I can't look past the possible side effects anymore - today has been horrible. For tonight and until I hear back from EP, I'm thinking of going down to 10 or 15mg and see how it goes. @Pistol: What are the upsides to taking an alpha/beta blocker as opposed to just a beta blocker? I've read a lot about Carvelidol on here and I think Labetalol too is one alpha/beta that Dr Grubb prescribes often for hyperPOTS patients. I was initially put on Bystolic when I first got sick and the first cardiologist told me it was all attributed to anxiety and the meds would help with that. It decreased the perfusion in my body (because I tend to have lower BP to start with anyway) and my hands were turning blue. So I'm not a huge fan of messing with these types of blockers to begin with but am trying to keep an open mind.
  18. @Peter Charlton so sorry to hear about your troubles. It's always a gamble with the trial and error of meds it seems. Anyone found one daily dose of 20mg propranolol to drop their vitals too much? What other treatments have helped to minimize adrenaline surges?
  19. Interesting topic. The second link is to an article about insulin therapy in pregnancy though.
  20. What are her symptoms for the idiopathic intracranial hypertension? Does it tend to correspond to the wonky BPs? My BP tends to run lowish - 90s/60s - but when I have drops in it, my already waning energy really drops off. Is she having dizzy or lightheaded spells when it drops?
  21. Why doesn't the allergist like midodrine or the beta blocker? Does she think it can be managed with diet only? So far I mainly deal with a PCP and EP. No real conflicting opinions as of yet as the PCP defers to the EP on all things autonomic. Seeing an allergist and endocrinologist later this year, so we'll see if more docs bring in differing views.
  22. @Peter Charlton: What damage is that, Peter? Downregulated BP and HR? What were your symptoms to prompt the beta blocker usage?
  23. EP started me on 10mg of propranolol about two weeks ago, to be taken at bedtime to help with nighttime tachy episodes thought to be from adrenaline surges. Trial went well, so he had me increase to standard dosage of 20mg nightly. Been doing that for about a week now and haven't had any prominent issues and no nighttime tachy either. In fact, the past two to three days I have felt almost completely "normal" except for a few daily bouts of dizziness and lightheadedness. Today, those symptoms kicked into full gear and I've come close to passing out three times so far. Haven't been able to get vitals right away when it happens, but a few minutes after laying down and elevating feet, BP is 105/73, HR 59. Not terrible, I don't think. And I've noticed that my BP (and to some extent, HR) is lower during mid-morning orthostatics (I usually take them around 10am each day). For example, my BP/HR at the 5 minute standing mark today was 84/65 - 64, which is lower than my usual of around mid-90s/mid-60s to 70s. I've just sent a message to the EP, but thought I'd ask here too: I've been told that propranolol is a short-acting beta blocker, but is it possible that it's creating latent adverse effects and dropping my BP and/or HR periodically throughout the day? I really thought we had hit on a winning combination for treatment, but this dizziness/presyncope crapola is horrible.
  24. @dizzytizzy: If you have the lab's reference ranges, those are good to include too. I know my doc says TSH should be closer to 1.0 for patients already on thyroid replacement (and for people not on replacement therapy, anything over 3.0 is generally a sign of underactive thyroid) and you generally want the Free T4 and Free T3 to be in the upper 1/3 of the reference range. The problem here is that the doctor didn't even run Free T3, instead she ran Total T3. Free T3 is the amount of active thyroid hormone circulating in your blood - essentially, the amount available to be used by the body. Also, when testing thyroid, I always do my labs first thing in the AM, fasting and before taking my meds. I mainly do this so that I have consistency across all the thyroid labs and can more quickly spot changes as thyroid hormones can and do follow a diurnal pattern. And while it looks like the doc tested for TPO (thyroid peroxidase antibodies), she didn't test TGaB (thyroglobulin) antibodies. These are often elevated in autoimmune hypothryoidism AKA Hashimotos. Were these labs taken at roughly same time of day?
  25. I have Hashi's. Would you mind posting her lab results and reference ranges? I find that a lot of doctors will say thyroid is normal, though it may not be optimal. There's a big difference IMO! I was dx'd in 2014 and had been well-controlled, but when everything with auto dys started up in January, my thyroid has been off. Waiting on an appt so we can adjusts my meds. I feel like Hashi's makes the auto dys worse and vice versa.
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