Hi...i'm New...and Looking For Some Answers

[Heckofagal]

Hi all. I'm sorry if this post gets longs but I've been struggling for a while and need to find some answers. My journey has brought me here but I'm not 100% sure I'm in the right place so let me start at the beginning and get some opinions from you all, if you don't mind.

My health issues began 6 years ago, when I was 38. My husband and I had taken our 2 daughters to disneyworld during their fall break. It was a very fun but exhausting trip. I kind of stressed myself out even before we left trying to make it the perfect trip, buying all the Disney gear we would need, making us all matching shirts, all the packing etc. And after spending the full week trying to do as much as possible, walking many miles a day, I was whooped. Came home with blisters on both feet and a stress fracture in one foot. Then shortly after that I was helping out with my nieces wedding and half the wedding party had the stomach flu. I kept thinking I was getting it too as I just did not feel well and really had no appetite. But I just felt that way for a couple weeks and never ended up with the stomach flu. Finally went to the dr on 11/8 and at that point we thought I had a "smoldering appendices" as I was also having a dull pain in my appendics area. I also had high BP that the dr. said could be a result of me being sick, and I was prescribed a beta blocker. He sent me for an abdominal CT and bloodwork. We discovered my appendics was fine but I was diagnosed hypothyroid with a TSH of 7.1. Let me just say at this point I KNEW something was terribly wrong and I SERIOUSLY thought I was close to death. I was started on 75 of Synthroid and within a within a day or 2 I was feeling worse, more dizziness and anxiety and a added choking sensation in my throat. My symptoms at that point: dizziness, insomnia, sudden anxiety issues, indigestion, tingling in extremities, brain fog, spikes in BP, heart palps, ear pressure, pain in lower right abdomen, pain in upper back, hot flashes, and problems getting eyes to focus. I ended up in the ER thinking I was having a stroke or heart attack, but tests were OK and I was sent home with a diagnosis of acid reflux.

After that I started to improve a bit. By February I was still not feeling well. Had an adrenal MRI to rule out pheochromocytoma (my dad had an adrenal gland removed for this) and that night I ended up in the ER again as I had a bout of double vision. Head CT showed no issues and i was sent home.

I decided to see an endocrinologist as my general practitioner was telling me he could not find anything wrong. Endo said my numbers were in range and to go back to my GP as if I was still sick it was not my thyroid. I decided to find someone who would listen and went to see a naturopath I found on the top thyroid docs list. Someone finally listened when I said I was still sick. I showed her my labs that had been run and she told me my B12 was low enough they would recommend injections. I asked to try supplements first and she agreed and I was amazed how much my first mega-dose helped. I woke the next day and my vision seemed so much sharper. And my tingling gradually went away. I think I was also started on adrenal supplements at that point too as we'll as Vit D and a probiotic. And at some point we tested my hormones and I was started on progesterone cream. She brought me back to health. I don't know if it was all the additional supplements or if my body finally got used to the thyroid meds but I actually felt great by early May. I remember one weekend getting my whole house cleaned and going for a bike ride with my family and outlasting my 2 young girls. I was crying tears of joy.

Over the next 4-5 years I was pretty good. Needed some med adjustments here and there, and we added some cytomel, but nothing major. Had a little setback in 2007 when we went back to Florida again but I think I stressed myself out again before we left as I felt faint before we even left . Felt a bit rough on the trip and found my FreeT3 was too low and felt better after it was adjusted. I had some life changing stressors before my thyroid went haywire. Severe marital issues that almost lead to divorce, layoff from my job and unemployed for about 6 months and my mother was diagnosed with lung cancer. I dealt with those stressors ok but my dr seemed to think it took its toll on my adrenals and thyroid. And as I said I did pretty good for a few years after finding my naturopath. Then more life stressors. Another layoff and another 6 months unemployed before I found a temp job paying considerably less, helping my aging parents who both were having health issues, death of my mother which lead to putting my father in a home and he passed away 9 months later, a dear friend being diagnosed with colon cancer and passing away and a brother in law being diagnosed with a leukemia. Add to that the typical working mother of two girls stress and I guess I began to crack.

A little over 2 years ago I started having the lightheadedness and anxiety issues again. My dr gave me another thyroid med increase and started suggesting anxiety/depression meds. I've refused these all along as I felt like my issues were medical not psych and being overweight I did not want to gain any more weight as I know that would lead to more health issues. So fast forward to today and I am looking at my 7th thyroid med increase in the past 25 months. I went from 112 Synthroid and 5 Cytomel to 200 Synthroid and 20 Cytomel. My FreeT3 is currently around 80% of the range but I can't seem to get my FreeT4 above 50% of range, but I'm hoping this next Synthroid increase will. I've also had elevated ReverseT3 but just got that back in range although it is high in range.

If you are still with me (THANKS) here is my question. A lot of my issues seem autonomous in nature. Do you think it is something that can improve once my thyroid numbers are better? I have issues all the time with lightheadedness. Have never fainted but some days I feel like I am about to. I've also had issues with fluorescent lights. Some stores really seem to bother me and some doctors offices are an absolute nightmare. I've wondered about an inner ear problem and I went to a neuro-ENT, but that went nowhere. He said he thought I had some viral something that affected my middle ear and gave me vestibular exercises to do. I also have issues in restaurants or malls or places where noises seem to bounce off the walls. In the past I have felt like my digestive system has completely shut down but things are pretty good in that dept right now as long as I take my magnesium nightly. And I am plagued with fatigue. I am almost always in bed by 8:30 or 9 and have to struggle to get out of bed by 6 or 6:30. Hardly ever cook or clean anymore as the couch is my best friend.

Granted I am feeling better than I had been, but I am still not right. I would have made an appt already with the dr. ChristyD has mentioned but I keep going back to the fact that my thyroid has taken such a dive that I still wonder if this is all thyroid related, and just needs more time. My family is concerned for me and my friends are fed up and don't trust my dr. But my dr seems to understand that you need to be in the upper range with your free Ts and not just 'in range'.

I also wanted to mention that my 60 year old sister had some sort of spells when she was in her thirties (I think) and her grandson has some sort of mitochondrial disease. His dr has mentioned that her spells might have been related to mitochondrial issues but I did not get the specifics. Her issues went away and she is perfectly healthy now. Her grandson's prognosis is not so great. He is very delayed and they say kids like him don't make it past their teen years.

Thanks!

[Heckofagal]

So sorry that got so long!

[Heckofagal]

Forgot to add that this year I also developed severe heat intolerance. Being in the heat made me feel awful and that used to never happen.

[leydengs]

When I was in the hospital and in a wheelchair they diagnosed me with autoimmune thyroiditis and they started me on a thyroid med and they tried to blame all my systems on that since your thyroid being off can cause a lot more problems then you'd think, however when the head of endocrinology came to see me she said my numbers really weren't that bad and that my thyroid was not the cause of all of those symptoms. Have you ever been tested for POTS. I know if I'm in the heat for more than a few minutes I become very lethargic. I do know that a lot of people are misdiagnosed with anxiety/depression due to the symptoms of POTS because according to blood tests, MRIs, etc you seem to be a healthy person. They kept telling me that I was unable to walk because I was probably going through postpartum depression (I had just had my 2nd child) and my husband (now ex husband) kept saying "She's not depressed, you don't understand Gwen does not sit still so something is wrong!!" ha! They made me see a therapist anyway. I think the most frustrating part is that you know that something is going on and something is wrong but everytime they do a test either it comes back completely normal or something (ex: Vitamin D) comes back just slightly off or something like that. Just keep pushing for answers and if your doctor seems like they just really don't know then you can always try another one. I have only actually fainted a couple times in 15+ years of having POTS but 79%-80% of the time when I stand up I feel like I'm about to. It doesn't matter if I stand up slower (I love when people tell me that, "Just stand up slower next time" ha) or if I stand up fast, etc. Good luck on finding some answers!!

[targs66]

Just to share my experiences with thyroid docs and meds -- I was utterly convinced that most of my problems were due to hypothyroidism - my levels were "normal" but in the very low normal range. I saw a thyroid specialist, who started me on very low doses of levothyroxin (T4). I had reactions very much like you describe - massive anxiety, ear pressure, brain fog, insomnia, nausea and so on. We then tried Armour thyroid (T3/T4), again, starting at very low doses and trying to increase. Same results. I then learned about "adrenal fatigue" and tried to supplement with Cortef - still felt awful. I stopped all of the meds. About a year later, I tried T3 only at the recommendation of another doctor. Exact same results. Like leydengs, I finally had one doctor who told me that the most likely conclusion is that my problems are not caused by hypothyroidism.

I am not in any way discounting the legitimacy of hypothyroidism, and I know thyroid meds have been a lifesaver to many people -- but I think that in my case there was a tendency to attribute everything to hypothyroidism. Unfortunately, I haven't found any answers as to what is actually causing my problems, but given my terrible reactions to thyroid meds, I think the answer lies elsewhere for me.

I wish you luck in finding some answers - you've come to a good site!

[Heckofagal]

Thanks for your replies.

Leydengs-I don't feel lightheaded when I stand up, I just feel 'off' all the time. Sometimes it is worse than others, but I can even feel that way sitting. I do spend a LOT of time on my couch, but I think that is just from feeling like crap all the time and the fatigue. And I've never been tested for POTS. I have horrible white coat hypertension. It is sky high EVERYTIME I see my dr but she understands and just confirms I am occasionally testing at home. Not sure what a doc testing for POTS would think.

Targs66-I am certain I am hypothyroid, I'm just not sure if there is something else going on too. There is no way I could be taking the meds I am on now if I were not hypo, it would surely send me hyper. And the symptoms were all before I started meds, and many have been relieved by going on meds...I just know I'm not 100%. (Ok, I'd settle for 85%). I've been told I also have adrenal issues. Taking a supplement to help with that and tried a short course of cortef and that did not really help.

I guess I should see a dr who specializes in dysautonomia...but will he be focused on dysautonomia only? What if I have CFS or Lyme disease or something else I have not even considered?

[leydengs]

They should test for everything because I've read posts on here where people have POTS and lyme disease so my guess is that they would have to rule out all other causes. I know they tested me for everything possible!! I was not aware I had that much blood to give sometimes ha!

[Heckofagal]

Bumping my original thread because I'm back here again and I'm 100% sure this is where I need to be. I never received treatment or confirmation of Dysautonomia but the more I read here the more I shake my head "yes". I'm still adjusting my thyroid meds. Have become hyper 2 different times since this original post and had to titrate my meds down and now I need to titrate back up as I am very low in my Free T3 and Free T4. And I am always very sensitive to thyroid dose changes so that could be the reason for my increase in dysautonomia symptoms, but none the less I know it is not just thyroid symptoms.

Since the decline of my health I have struggled with handling stress and of course there has been plenty of that lately. In Dec 2014 I was laid off for the 3rd time. And though being off work for a few months may have had some benefits, the stress of looking for a new job, interviewing, rejection after rejection, and worrying about paying bills has not been beneficial. Add to that being the mother of 2 teenage daughters, the death of my dear brother-in-law in April, starting a new job, a dear friend's husband getting a death sentence cancer diagnosis, thyroid med change and added job stress and its been a rough few months here. Heat intolerance is at an all time high, maybe because its the end of summer and I've had enough 100 degree days. And my new desk at work is right against a wall of floor to ceiling windows. The heat alone everyday is enough to make me feel like passing out, but even when it is not super hot in there, I think the glare messes me up a well. My husband and I took my daughter to college 2 weeks ago, and I did well that day with helping to carry her things in the dorm, and even though it was super hot in there I stayed all day to help her get settled. We took her on a Friday and I knew I would have 2 days to recover before going back to work, but work has been stressful and after a day of the normal not enough hours in the day this past week I had a hard crash. Then my friends husband ended up in the hospital and at the time she needed me most I...just....could.....not.....go.....

And my friends have been on me for years to find a new dr. so all that spurred me to come here and get help. I've found a dr in the area to go see, I just have not made the appointment yet, but I will this week. My question is this - I have horrible white coat hypertension. I already take meds and occasionally struggle with high BP and my current dr. understands this. She knows I monitor at home and I have kept a log for her in the past, but after a few years she has just come to realize that is how I am. But how in the world would I ever do a Tilt Table Test??? I've gotten in the habit of taking an Ativan before my apt but it can still be around 180-200/100. And this is going to my regular dr., I can't imagine what a new dr. will be.

I also told my regular dr. that my symptoms are waaay worse right before I start my period so she decided to check some other hormones this last blood check and my DHEA came back very low, so she told me to start taking 10 (mg or mcg?) per day in addition to the synthroid increase. I tried the DHEA at the same time and I was super dizzy so I thought I would wait a few weeks and try again. Well, its been over 3 weeks and I tried again and I am super dizzy again today. I don't want to take it on days I have to work if I will feel like this? Should I try to open the capsules and take half a dose?

Thank you to anyone who has taken the time to read this!

[p8d]

Hi heckof,

I don't know where you are geographically but search the main page here for a dysautonomia specialist. The tilt table test checks for BP/HR change on changing position. I believe it is considered the gold standard test. Even if you never go back to the specialist doing the test it would add another piece for your naturopathic Dr to work with. Much of what you describe sounds familiar to me.

[Heckofagal]

I don't know if I am supposed to mention names here, but Dr. Kinsella is not far from me and that is who I am going to try to make an appointment with. It just concerns me that most of the tests to diagnose this disorder mess with my blood pressure when its already going to be volatile. I feel bad after a normal dr. appointment just from the spike in BP from the white coat hypertension so I'm sure this testing would put me on my *** for a few days.

[corina]

Hi heckofagal, I'm sorry you are still struggling. I think it would be best to talk this over (and have it backed up by your gp) with dr Kinsella. I really hope your appointment will go well, it seems you are def in need of answers!

[fitnesskelly]

Your story sounds similar to mine and we are close in age. My problems started 3.5 years ago, maybe even longer than 3.5 years. My health has declined since, been through I don't know how many doctors (probably 12) and still have no clue what's driving me to feel bad. I went through all the thyroid stuff, took all the meds for hypothyroid. The meds only made me worse. At this point we know that the thyroid is not my problem - as my endo explained, something is going on in me that is signaling my pituitary and thyroid to act like they aren't functioning correctly, when in fact those organs are fine. The latest theory is hemochromatosis, which I follow up on soon. I've also been through a year of antibiotic treatment for Lyme (tests were inconclusive, so we decided to try antibiotics and see what happened). A year later, we don't think I have Lyme. All the tests for AI are negative. I've been through so many theories and tests. All I can say is don't give up.

[Heckofagal]

Thanks for your reply Fitnesskelly - I know I have a thyroid issue, and have also been told Adrenal Fatigue. I take a nice size dose of thyroid meds and adrenal supplements. However, I am very sensitive to med dose changes and while going through those changes more susceptible to the dysautonomia symptoms. I've been dealing with this for years and figured it was more than just my thyroid, but I've been to regular GP, naturopath, cardiologist, sleep study, appendix ultrasound, head CT, adrenal MRI, ENT-neuro and nobody is finding anything. Ive been tested for Lyme, and it came back inconclusive as the bands I tested positive for are not clear indicators. (???) Took a hard crash this time and I am just not bouncing back like I normally do. I'm exhausted all the time, feel like passing out everyday at work, can't hardly walk through wal-mart anymore as the lights make me feel weird, and loud noises in restaurants make me very uncomfortable.

It's funny you mention hemochromatosis. My brother has this and my siblings and I were all told to be tested. I tested positive for a single strand mutation but from what I understand you have to have double strand mutation to have hemochromatosis. However, my iron tends to run on the higher side, I am never anemic.

[Heckofagal]

Sorry to bump this old thread but it was easier than trying to provide all my history here.  I was supposed to see Dr. Kinsella back in Dec.  But I went to my appt only to learn it had been cancelled.  The office tried to leave a message for me, but unbeknownst to me, my answering machine was not working at home and apparently they did not have my cell phone number.  So I had to reschedule and wait another 4 months to get in.  (I was devestated to say the least.)

Finally got in to see the doctor this week.  I gave my history, did not say I was here because I think I have an issue with my autonomic nervous system, but in my history I also noted that my daughter was diagnosed with autonomic issues.  My BP and pulse were taken while I was laying down and then several times when I was standing up.  I have white coat hypertension so my BP was elevated, but not too bad, and I think it was pretty consistent each time.  The doctor did his exam and told me my issues are caused from migraines.  I know migraines aren't always the headache kind, but I don't even get regular headaches much.  He said he wanted me to start taking Topomax, and after ramping up to 200 mg if I don't see a 50% reduction in symptoms he will try something else.  He mentioned that Topomax also helped people lose weight, and that could help my issues as well.    Yes, I would like to lose some weight.  It is not the root cause of my problems.  Also told me to start a rigorous exercise program.  He did not mention automotive issues and for some reason neither did I.  Perhaps I was so shocked or disappointed.  Or perhaps I don't want to be that person going in to the doctor to say "I've been on the Internet and I know what is wrong with me".  I'm fairly certain my issues are NOT migraine in in nature.  But from what I read about Topomax it is used to treat several issues so I;m willing to give it a try.  He did say however, that the nickname for the drug is Dopomax, because it can cause cognitive impairment.  Great!  So I told him I had some testing to do on Wed so I would wait and start taking it We'd night.  Well my testing went well Wed and now I have an interview scheduled for April 28 so I will wait until after then to start taking it.  But if I start a new job I'm also concerned about cognitive impairment as well.I know it's never a good time to start but maybe I should wait a month or 2 until I get thru training?  Yes, I want to see improvement now but Lord knows I've already dealt with this for years, and I don't want to screw up a chance for a good job.

Any thoughts or suggestion?

[Rose11]

Of course, everyone reacts differently to any kind of medication, but I have heard many people can have trouble with Topomax with cognitive impairment. Since you mentioned you are going on an interview, you may want to try it over a weekend OR  after the upcoming interview.    Can you see another doctor about your health issues to see what they say?  Good Luck on your upcoming interview and overall in general...

 

 

[Heckofagal]

Yes Rose11 I will wait until after the interview, but if I'm starting a new job that won't be good either.  I've been to many doctors over the years, general physician, cardiologist, naturopath, sleep study, neurologist.  Nobody knows why I still have issues.  I have high blood pressure and hypothyroidism, but that does not include why I still have so many issues with dizziness or just feeling off.  This is exacerbated by heat, or noises or lights or patterns on the wall or floor.  The heat intolerance is a big one.  I try to avoid outdoor activities during the summer, but walking into an office that is a bit warmer messes me up, and I work on a floor that is ceiling to floor Windows, and simply walking to a co-workers desk that sits by a window messes me up.  I know i look odd as I try not to pass out (never have, but that is how I feel) but I can't keep explaining to everyone, especially when I can't explain it to myself.  I think it is autonomic in nature, that is why I sought out Dr Kinsella.  

[Rose11]

Did they ever mention taking a beta blocker?  Those should not cause cognitive impairment.  Also for many people, just walking might help overall.  I sure hope you can get answers or see and improvement,  since you hopefully will start a new job soon.  I wish you the best of luck!!!!

[SarahA33]

 

On ‎4‎/‎16‎/‎2016 at 3:05 PM, Heckofagal said:

   He did not mention automotive issues and for some reason neither did I.  Perhaps I was so shocked or disappointedPerhaps I was so shocked or disappointed.  Or perhaps I don't want to be that person going in to the doctor to say "I've been on the Internet and I know what is wrong with me".  I'm fairly certain my issues are NOT migraine in in nature.

Hi there! I see this original post is from 2012, I feel badly that you've been going through such a long fight.  Do you have a follow up scheduled with Dr. Kinsella? I'd just like to offer some personal experience.  I've left office appointments too with feeling like there were things left unsaid. What I've found most helpful in those situations is to work on what I can from the last appointment, and write down a list of the 3 most important things for the next one.  I am on the ER Topamax, and I've got word finding difficulties from it. It's controlling my condition though, so the benefit outweighs the side effects. It takes 4-6 weeks for Topamax to start working and build up in your system and 2-3months to experience full affects. So, it required patience for me. I understand your hesitations, however, maybe topamax could provide you relief. We talk a lot about trial and error on this site!

If I'm thinking of the same Dr. Kinsella, I'd really consider talking to him about your concerns regarding autonomic issues. He's spoken at the Dysautonomia International Conferences and has done seminars on Autonomic issues,. We have members on the forum who see him, maybe someone will see your post and offer some input. Anyway, I have supine hypertension - meaning my BP rises when I stand, headaches, dizziness, and temp. regulation issues. Heat intolerance mainly, though, so I know what your going through. Good luck with your upcoming job.

Sarah

[LisaP63]

So sorry to hear you're still searching for a diagnosis! I was on Topamax for a couple of years. It was a miracle drug for my migraines!  I had to be on a high dose to get the benefit though, and eventually I realized that I couldn't add simple numbers (my kids' reading minutes!). I'm sure I was slowly getting "dopey", but I was coping until I had that scary realization! At that point my doc said it was time to get off it. It's very important to titrate as prescribed by your doc and be patient- you really want that lowest dose that gives you relief! I begged my doc to let me increase quickly on Topamax and it was a mistake... very disoriented, horrible feeling until it leveled out! I also experienced other side effects (including weight loss), but I decided to accept them so I could be out of bed. It's a balancing act...symptoms/meds/job/life. I hope Topamax helps you! 

Yes, I can relate to the difficulty in what info to give your doc! I went to my kids' specialist (both have POTS) after I got headache relief, b/c I still felt so sick (dizzy, nausea, increased HR , fatigue all worse when sitting and worse standing...) I told him I've had migraines forever, but I feel like this is different- and maybe I've been attributing it all to migraine, but I don't think it is. I told him I wanted him to evaluate for POTS or similar. The doc knows I'm educated about POTS and HE'S THE ONE WHO REFERRED ME TO THIS SITE seven yrs ago when my daughter was diagnosed. I think it's good to be up front with your doc about your suspicions. As long as you don't throw out a bunch of random illnesses and bad sources, I'd hope your doc would appreciate your knowledge. Still I it's always a balance with what info to give, how hard to push, how long to wait for a new med to work, etc. 

*Just personal experience, but if the Topamax is really for migraine (*not addressing other issues), I'd ask your doc/neurologist about Botox for Migraine. Once you get over the thought of "Botox", it can be amazing. None of the usual side effects possible with the other preventative meds (positive side effect of smooth forehead! ). You have to fit the migraine profile, etc. to be eligible for Botox.

 Good luck, and keep us updated... your info may help us, too!!