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Could it be all anxiety related?

Hello to everyone! I decided to share my problem here because I've felt extremely down for the past couple of months. My story will be long, so thank you all in advance for taking your time to read it.

First of all, I am (since childhood) predisposed to melancholy, anxiety, brief and rare moments of depersonalisation and rare panic attacks, part of that coming from a traumatic childhood: the death of my father, an extremely (emotionally) abusive and unstable mother, social isolation for years (caused by her and later by myself) and other similar things.

So I do know that I also have some psychological/mental issues, I feel and I recognize them pretty well. Thing is, when I finished high school, somewhere after my first year of college, my life went on an ascending path (mentally, professionally, socially) so except for a few minor problems, I had nothing serious to worry about.

But instead of feeling better or at least the same as before, at 22 I started to get really ill. My cortisol went very high (almost triple than normal, but I don't have Cushing), my TSH jumped from 0,80 to almost 4, which (I then thought) caused half of my hair to fell out and an extreme fatigue. I was (and still am) mentally and physically exhausted almost all the time, no matter how much or well I was sleeping (even though I have to admit, I lived with a noisy flat mate and neighbours in the past, so I developed a sleep related stress).

Going on vacations or at home never helped me, it seemed that I was unable to fully relax. Then, about a few months later, I begun feeling muscle contractions almost all over my body (legs, hands, even my neck and buttock muscles). Some were subtle, more like fasciculations, but others were more violent and even visible for other people (my hands, fingers especially and my feet were jerky, it felt like a myoclonus. I was having 2-3 or even more of these per minute, which only exacerbated my tiredness. I also developed an essential tremor (in hands and sometimes legs and head too).

I experience bone pain pretty often, and sometimes it hurts really bad, especially the legs. I also get bloated very easily, especially in the evening, it seems like everything is fermenting in me.

Till this day, none of these symptoms had gone away, and it's been three years. I had a lack of vitamin D (probably also from childhood), but now I corrected it with supplements. Ca, mg and all the electrolytes are checked and fine. I tried to take Mg anyway and a B complex (level of vit. B12 is also normal) for weeks, even more, but nothing changed. I also started to talk with an endocrinologist and she put me on Levothyroxine 0.25 for subclinical hypothyroidism, which helped my TSH to drop at 2,2, but nothing else has changed.

I have tachycardia since I was a child, but my blood pressure is always low (even 8/5), so it's hard for me to find something that's only dropping my heart rate (EKG, 24h Holter monitor and heart echo are normal).

Recently I had some bad migraines and strange feelings/pain in the eyes (hard to put it in word, but I was feeling a strange body in both eyes, even when rested or after eye drops) and other neuropathies. I consulted a neurologist and she sent me to do a cerebral and cervical MRI. The cerebral one came up normal, the cervical one showed an incipient degenerations of two discs. The same neuro had put me on heavy medications, such as Pramipexole (which helped with my tremor, but destroyed me emotionally), Gabapentine, Coaxil (tianeptine) and Clonazepam (the only thing from all the benzos and relaxants that helped with the muscle jerks).

After that I went to another neuro who weaned me off the first two medications and performed an EEG and an EMG on me. Both came out normal. He now referred me to a psychiatrist (which I am going to see the next week). My cholesterol is very high for my age and weight (it came out 368 a few weeks ago).

My serum copper and ferritin levels are elevated (it's not Wilson). I also lost 15 pounds (7 kg) in only two or three months, despite eating consistently. I became extremely skinny and weak, all the doctors told me that I look underfed and anorexic. I also experience shortness of breath when I talk or walk/climb a few stairs.

I feel like i'm losing my mind. I know that I have anxiety and what it can do to the human body, but I had it way worse in the past and I've never felt and looked this bad. These symptoms that I have from 3 years now never seemed to stop, not even two years ago, when I was still super fit, doing sports, eating healthy and going out with my friends. All the physical problems were still there. And they had only gotten worse over time. So please, if anyone had been through something similar or knows anything about these symptoms, tell me your opinions. I really don't know what to do anymore.
1 Responses
Avatar universal
I've been an anxiety sufferer for many years, but I can't say it really caused any physiological problems for me.  The meds I took for it, did, though.  Given the number of meds you were put on, did any of these symptoms start after you were put on medication?  I'm also wondering about the thyroid issue.  TSH is really a measurement of the adrenal gland, and you say you had very high cortisol, but you didn't say if that was just once in a test or you just think you have high cortisol (a lot of anxiety sufferers think they have this without actually knowing if they do or not.  While anxiety attacks are associated with high cortisol release, chronic anxious thinking isn't.)  To really know if you had high cortisol as a problem you'd have to get tested pretty regularly for a period of time to see if it was always like that or just the one time most of us get tested.  But for thyroid you'd have to get your T3 and T4 and conversions from one to the other tested, not TSH, which again is an adrenal gland test.  While the adrenals and the thyroid are intimately connected, you can't really tell what your thyroid status is unless you get your T3 and T4 tested a few times.  That tells you if you have a chronic thyroid problem.  If your thyroid is working but is off, you can often fix that with dietary changes and certain foods and supplements, but sometimes not.  If your thyroid isn't working, then you have to go with the drugs.  So the thyroid can be the source of all of the problems you're citing, and endocrinologists are sadly not very good at doing thyroid.  It takes a very determined patient to get to the bottom of a thyroid problem all too often.  Now, it can also be a host of other things, but I'm just not sure that the kind of anxiety problem you're talking about could cause this much of a mess with you unless you're severely traumatized and unaware of it or repressing it, which wouldn't be addressed by most of today's psychiatrists but would be a problem for a psychologist to address as you'd need to do therapy for that and most psychiatrists do little therapy anymore, mostly they dole out drugs, and they don't study a whole lot of psychology.  Freud they aren't anymore, which is probably just as well.  So I'm not at all sure a psychiatrist is the place to get fixed, because I'm not sure I'd be satisfied that this isn't a physiological problem given the vast number of problems you're stating and you've already been put on a bunch of psychotropic drugs without fixing anything really.  My suggestion?  Find better docs.  When you have very difficult problems like you're reporting, you need the best docs, found at university hospitals and the Mayo Clinic and Johns Hopkins and the like.  Best of luck to you.  Oh, and you don't say what your diet is.  It might be consistent but if it's consistently awful that can explain some of this stuff.  Peace.
3 Comments
Hello and thank you so much for your elaborate answer! I will try to address all of your questions. I'll start with your last one. My diet used to be pretty good, I was for many years on the "green" side of eating, with whole foods (organic meat and eggs, many salads, blueberries, nuts, seeds, taking supplements like Resveratrol, drinking matcha/green tea with manuka honey on it, almost everything that seemed and felt healthy for me), I was also very active at that time, going to classes, doing sports, as I said in my previous post, I really used to be fit and to take care of my body. But I was still feeling pretty off, you know? Not so bad as I feel now, but I still had all that muscular contractions, I was still losing half of my hair and I was feeling exhausted all the time. It was a battle for me to be so active and do all of my daily tasks. After I realized I lost so much weight (a couple of months ago), I got scared. It was after the holidays when I came back home and eat so much... My mother cooks well and always uses whole organic foods, in that period I was even eating cakes and bread and all those things that are supposed to make you gain weight. But I still lost it. 15 pounds in two months. Then I went on the fattier side of foods (for trying to put something back): bread with butter and other things in the morning, milk with cocoa, pizza, pasta. nothing seemed to help. Then I tested my cholesterol and I was in shock by how huge it was. I didn't even know what to eat anymore. Plus, I have something similar to SIBO, so I always have to stay away from foods that are fermenting. And I'm also lactose intolerant, so I'm only eating cheese and milk that are lactose-free. And gluten-free. Like a low fodmap diet, but not so strict. Anyway, even if that worked great a few weeks for my digestive system, now it doesn't really work anymore. I still feel gassy and my bowls are making strong and weird noise all day long.  I got tested for intestinal parasites, food allergies, celiac disease, and helicobacter symptoms 3 or 4 times, all came back clear. Tried all the pills and supplements for that, even Normix (Rifaximin), nothing worked. The doctors didn't really know what to say, except for maybe suggesting an intestinal MRI.  I also feel (sometimes) an unpleasant smell/taste in the mouth, but all my stomatological check-ups were fine, I have healthy teeth and gums. And pharyngeal exudates test are clear. I don't have sinusitis either. The smell usually goes away only with certain types of antibiotics and sulfamethoxazole, but it always returns after stopping the medication.
As for my thyroid, FT3 and FT4 always came back normal (FT3 a little on the higher normal side, but never over the line), same for ATPO and ATG, always normal. But my endo thought that my subclinical hypo could have lead to my fatigue, foggy mind, and hair loss, so she said to try a few months to lower my TSH level. Now I'm on my third month of Levo, it has indeed lowered, but I feel just as bad. The only good thing that happened is that I started to wake up (naturally) pretty early in the morning, but I still feel as exhausted as before, hair still falling. For cortisol, I got tested 3 times in the past (serum cortisol, at 8 am in the morning), but maybe I could try to test it from saliva or urine, I heard these two are more relevant.
My heavy medications, pramipexole, gabapentin (both are now off of my treatment scheme) and antidepressants started only 6 or 7 weeks ago, so there's no way they could have started all these. My problems started many years ago. What I don't understand is if my symptoms are all only stress/anxiety-related, then why when I was trying other benzos and relaxants, I was still shaking and having muscle jerks? Even though I was feeling good and relaxed from them. Why my myoclonus only stops from Clonazepam, which is created for seizures also, not only for anxiety and panic attacks. And why my tremor only stopped with pramipexole, a drug that is specially made only for that? Why are my ferritin and copper levels high? Why do my bones hurt so bad? Why do I always have tachycardia, but such low blood pressure? Why do i look and feel like hell? My docs didn't even seem to take me seriously. I'm really considering your suggestion and I will look for better docs in the next few days. Thank you again and have a nice day!
Not much to add, but my two cents worth is, this ain't anxiety.  You've got something that is hard to find like Lyme or fibromyalgia or some other very hard to diagnose and treat thing.  Just don't see anxiety causing all of this.  Hope you find someone who can help.
After 6 1/2 yrs of suffering in hell, I FINALLY got the attention of a "Nurse Practitioner", who actually listened
to me, and had reviewed my chart before speaking with me.
I had been complaining for a very long time that no one was
listening to me, no one was giving any credence to my complaints/my anguish in being ignored, and sent on my
way with no solutions. Not one of those doctors in that time
even attempted to seek out the cause of so many symptoms, many as you described.  I was besides myself and did not know what to do.  Was ready to show up in the ER, and demand some competent medical attention.  One more
time, tried to speak with the NP who actually listened to me
the first time I saw her. Then wasn't allowed to see her again. So, called recently and requested to speak with her.

She told me she studied my chart a long time before even
calling me back, trying to figure what was really happening with me. By this time, I had my own ideas, although did not
fully understand the condition. She asked me many questions, a lot of where all my pain was, and much more. She concluded as i had myself, she felt I had fibromyaligia.
Said, ALL my complaints were aligned with that condition.
Made sense , after she explained it to me.

Have been referred to a rheumatologist, and have been prescribed some medication...it sure explains all the problems I've been experiencing.
When reading up on this condition, it stated that it can happen to anyone at any time, young or old. I happen to be OLD...and reading further, stated that it can be brought on by Trauma in one's life. This all began, AFTER going thru a major stroke, which fills in all the blanks for me.  
I'm so appalled at how so many of us get ignored, shoved aside, and explained away as being 'flighty, brainless,  a chronic complainer" whatever label , to divert that we are not truly given the care we deserve.

I don't know how I managed the strength to continue looking for answers when I lived in so much excruciating pain, and living with so many other issues as well,. thyroid,  hair loss, constant itching, extreme tiredness no matter how much sleep, and on and on,  but I did. And, I
believe I have found  my answer!!

Keep searching. Keep asking. You will run into that one person that truly wants to discover what they can do to help you.  From the same side of the street, I cheer you on....keep trudging until you find your own solutions.  And,  YOU WILL !!
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