Something is wrong! Can anyone help me?

[Tig114]

Sorry this is gonna be long. I am freaking out and I'm worried I'm a making a big deal out of nothing, but I don't know what to do anymore. I feel stupid checking myself into a hospital, but I don't know what else to do. I have PTSD, hypothyroidism and PCOS (poly cystic ovarian syndrome). They were probably about ten years late on the diagnosis. Last year, over the course of a month I went to sleeping 13-15 hrs a night and going to work. I couldn't handle anything else, I was so exhausted. I went to the doctor and was diagnosed with a slightly low TSH level. At least 6 months later, I get diagnosed with slightly raise levels of testosterone/androgens. Apparently, birth control is how androgen levels are decreased and I was on it, so my gyno put me on lupron for 2 months (a drug that induces menopause temporarily- NOT supposed to be used for PCOS). It helped lower the levels, and then I went off lupron and the levels went back up. I stopped taking birth control, because I felt like it had been making me crazy- super moody, confused, brain fog, kind of like a bipolar mess with really bad cramping. Not a pretty sight. However, when I was off of it I still was somewhat moody, so now I'm thinking I need help. I went to a new gyno and that one didn't understand why I had been on Lupron and put me on the nuvaring. Ever since I have been worse. I went to an endo and she wrote me off as a therapy case, told me to lose some weight and told me that my raised levels of testosterone were not a concern. She even asked me which doctor was treating which condition. Do endocrinologists just pick and choose what they take care of?

Either way, I feel like I am getting worse. I have been trying to switch doctors around and find an endo. I have an appointment monday, which took only 20 calls or so to find an available one on such short notice. I can't sleep well, I cry randomly, I'm depressed because I feel so disconnected, I don't want to be around people because I am so moody, I cannot remember anything clearly, I argue for no reason, I get jittery, I have terrible anxiety, I shake a lot more than I used to, I get cold really easily, I have abdominal pains on occasion, I feel sick to my stomach a lot, I vomit and get nauseous (seems to be more connected to birth control), my hands and feet tend to be frozen, I stare aimlessly, sometimes I lose weight all of a sudden and other times I gain all of a sudden, I have eye twitches, hands and feet tingle and have numbness randomly, possible swelling in extremities (not positive), I have racing thoughts, occasional headaches. . . I don't know what to do anymore. Even if I go to the hospital how do I get anyone to take me seriously? My thyroid related blood tests come back within "normal range" therefore I am fine according to the doctors and need more therapy and to lose weight. I feel like I am going crazy. I used to be so laidback. I wasn't like this, but I don't even know when that was. I already lost one friend, almost broke up with my boyfriend, and things with the family haven't been so great either. I can't live like this. Okease, anyone out there know of what can help me or if I am going in the wrong direction?? I want my life back.

[stella5349]

It sounds like a good plan.

[Tig114]

Hey, thanks for all the feedback. I took another look at everything and I don't think I'm hypothyroid. At first, I was really confused, and I don't know if I am on the right track now or not, but I don't really have another choice. My TSH levels were low and always have been, but my GP put me on levothyroxine for hypothyroid symptoms and low T4. I never even thought about it until now. I realize that TSH isn't the best test for thyroid, but between that and my headaches, I am thinking that maybe it is a pituitary or hypothalamus issue. A pituitary tumor would make sense- low TSH, low T4, high cortisol. . .everything else is off. I am going to the doctor tomorrow and telling her I want a variety of blood tests (TSH, Free T3, Free T4, prolactin, TPO, aldosterone, renin, TRH, B12, and AB) an MRI or CT or both. I don't even know why I am on levothyroxine! Hmm. . . I think I need to get off of all my medications. . . at least metformin- I'll wait for test results on the levothyroxine. I hope this is kind of what you were thinking for the train of thought- please let me know if you meant differently, but I hope this will work out. I'll update when I find out more!

[stella5349]

your following in the pattern of all your hormone panels are slightly off. I got another journal on the insulin resistance issue too.

You are at the point right now where many things are compromising the root issue of why this is happening. The trick is to find the root first then the others should follow back into suit with a little push.

My advice. - Get off the train of thought on that "normal"  comment,  based off lab ranges.. Just because you fall into the scale within those ranges - a doctor MUST pattern the levels on an individual level to get things working just for you. Trust me on this - your estrodiol cannot be working right if those other levels are off - so pinpointing them all correctly is the only way to go.

High cortisol = adrenal disorder ( driving component) ... adrenals will bounce off T4 and T3 levels off = thyroid ( circuit for cells) + heart ( organ of oxygen) + Vit D - low - host of pitutiary abnormalities ( main switchboard) =  FSH - LH abnormals with + liver enzymes ( filter)  + pancrease = insulin resistance + testosterone, progesterone high levels = estrogen/estrodiol low = cyst and tumor abnormals. then back to pitutiary and adrenals. This is just basic logic of how the body will correlate as one and the last thing you need is to have each thing threated seperately right now.

As you see I didn't even bring up "symptoms" in this train of thought. Those are your warning calls for you to learn and know how to fix things. The med metformin is a popular fix for certain things but it is - and will not put the components back together in your body to work as one. It's just a bandaid of treatment for one issue while others are going haywire.

[Tig114]

Hahaha. . .I'm insulin-resistant. My body doesn't convert T4 into T3. Vitamin D deficiency, High cortisol levels. . .and the tests continue.

[Tig114]

Yes, that was testosterone levels are slightly elevated. I guess 90 something, after lupron was at 56 and then two months later at 78- apparently no one thinks it is an issue or that anything should be done about this. I really don't understand why they just want to treat symptoms and not lower the levels. Is this common?

I had estradiol tested and it was normal for the luteal phase at 46, I believe. This would make sense and be normal, since I am not even sure I ovulate.

The doctor said that she wants to switch me on to metformin. My gyno had suggested this, but he decided birth control was a better option, since I don't especially want to get pregnant right now, but I would rather be pregnant and happy than feel angry and depressed almost constantly. Hopefully, the metformin will work out. I need to research more on it, but I fully agree with you that birth control is bad.

I think I am going to keep posting some more stuff and see if anyone has other ideas. I have waay too many medical issues and too many people doing too many different things.

How do I track down an A-4 doctor?

[Tig114]

Well, today I go to the doctor, so hopefully I can get what I need. . .who knows though

[stella5349]

OK - Hello - and welcome. For Tig114 - I read your post and offered some thought on that thread. Continue to get in here with questions and others will also comment I am sure.

For angilv - You haven't gone into a whole lot on thyroid tests for someone to look at those labs and make suggestions, however, having any hormonal issues is very challenging so you should feel validated and your post was very well written.

I do have some thoughts here but they are my opinion. You clearly talk about an abnormal balance with testosterone. I assume high right? (you post is so long I may have miss that)

If testosterone is the case then an abnormal balance of progesterone should also be seen. There are 3 different estrogens - one is estrodiol and that I would assume is very off to with bad testosterone.

High testosterone w/ low progesterone and low estrodiol will do exactly what you are referring to in symptoms and maniac behavior. Unfortunately taking in synthetic brithcontrol as you are on - will complicate things further and mostly could be why you suffer from PCOS. Keeping poor levels of these hormones is bad for you and can bring on many ill effects and diseases as possible as bad as cancer. You asked about endo and their knowledge and what you were told was exactly right... The - some - are not educated entirely - or want to know ALL the endocrine system and don't have to either.

What is the "cause" of your bad hormone levels? - That is the question. Could it be thyroid - Yes - it can with other things too.

Here is what you should look into to see if this line of doctor is more what you need. There is something called an A-4 doctor.This type are trained in a fashion where they know the body as a whole - and do not pick it apart as so many others do. They can be MD's - GP's or even endo. Most likely you will find a title of Intergrative Medicine License with them. Those - in my opinion - are the best practioners out there to pin point what's off and correct it. Some take insurance - many don't why? - I don;t know... but with the downhill health you are in - you may find them to be your best thing to help you.

Whatever my 2 cents is worth here to you taking birth control??.... Throw that stuff (cr@p) right in the garbage and stop it... It is horrible for you in many ways and will ruin your health. I believe it contributed to my health issues - but it was way to late in life for me to reverse it.

[Tig114]

I don't know if anything will make us better. I really hope that something is out there. I can't keep living like this (or you). My therapist and now you are the only two people who seem to actually believe me. Ha! Too bad I talked to all of those other people first. I don't know how anyone could possibly survive this disease or want to live with it. I started crying when I read your post, but who knows if it was because of how closely it relates or because I am a hormonal mess. I am SOO frustrated and upset not to mention angry with God or higher power or whatever the heck it is that keeps ruining my life. Sad, it's 4 in the morning, I can't sleep even though I spent all of yesterday cleaning and painting and now I'm crying. Will it really never end?

[angilv]

oh my gosh, i just joined this blog/group only moments ago.  Only read one post before yours, and replied to it, but it didn't even touch the tip of the iceburg of how i feel, what i've been through, and just how awful my disease has affected my life. I will paste a copy of that post here...but, I first I just have to say that reading your post was like reading about my life, I couldn't have described my life or issues any more exact than the words you wrote.  Absolutely everything I can relate to, everything.. I didn't know that there was someone else in this world who could relate to me and what i've been through and still going through, 9 years after diagnosis and radiation treatment, and years of synthetic thyroid, dosage changing almost monthly to 6 weeks, everytime they drew my blood, and still draw my blood... for 9 years having my blood drawn every 4-6 weeks, hoping that one day i would be stabilized and not have to endure that, on top of everything else.  And as if the pain/problems/symptoms of Grave's disease, Grave's Eye Disease, switching from hyper to hypo and dealing with the issues of both situations, I also have to deal with the mental issues and problems I have, and only getting worse dealing with my health, and feeling like i'm going crazy, and even worse, feeling that everyone thinks i'm crazy.  I have totally had two nervous breakdowns that should have caused for hospitilization, but I never sought medical attention in fear that they would put me int he looney bin.  I have isolated myself from everyone, except my daughter, and I don't want to see anyone, and moreso don't want anyone to see me.  I hate the way I look, after my Grave's took a toll.on my appearance.  I used to be self confident.  I don't even recognize my own body anymore, and the weight fluctuations have only gotten worse over the years, and just recently gained 50 pounds in a matter of 6-8 weeks, and I couldn't stop gaining weight in my stomach if my life depended on it.  It took my psychiatrist to recognize and diagnose me with myexdema, something i had never heard of before, from any of the 20plus doctors I have seen in the past 9 years.  I have no faith in the doctors or psychiatrists, because I believe there is nothing or no one that can make me better.  And sometimes i think the doctor or psych just needs to acknowledge the pain and hell I have been through, and going through (and that you are going through), and validate my feelings, instead of making me think i'm crazy or giving me false hopes that they will be the one's who will "cure" me...and if someone else tells me to go for a walk every day, cause exercise is the cure for depression and pain associated with chronic illness, and the only way to beat chronic fatigue, I will just scream!!  IF I have the energy to exercise, I would... If I didn't have debilitating pain in my joints and muscles, and if my hands and feet weren't in so much pain, and so swollen that I couldn't move them, THEN I WOULD GO FOR A WALK!!  It's like telling someone who only has one lower limb to go for a walk, you will feel better!!  For me, Grave's has been a disabling disease causing even more disabling condition, so treat me like you would anyone with a disablity.  UUUGGGHHH!!  Dealing with these doctors and people just gives me reason to be even more depressed and unable and unwilling to even try to relate to anyone who doesn't know the first thing about the effects of a severe autoimmune disease....