Discussions By Condition: I cannot get a diagnosis.

I really need some help and not sure where to turn

Posted In: I cannot get a diagnosis. 9 Replies
  • Posted By: mccourt
  • June 4, 2012
  • 07:32 PM

First off, I am a 21 year old female and weigh 225lbs . I have had many health problems in the past few years and am at a loss. I'm one of those people who has to be drug into a drs. office and lately have been going of my own free will to try to find an answer. I have been unable to do so and I think if I could get a few ideas of what direction to head, it would really help. I used to be very active and always outside in the woods or on the river, but that has changed. I know it is a long list, but I was trying to include anything I could possibly think of no matter how small just in case it was of help.

I have been check for hypothyroidism (numbers were off, but apparently not enough for my clinic to be concerned). I have been diagnosed with muscle spasms (they come and go. I was seeing a chiropractor for awhile) and migraines (several times a month). My biggest issue, in my opinion, is that I have no energy when I used to be extremely active. I have trouble going to sleep, then when I do fall asleep, I can stay that way for 15hrs and wake up still tired. I've tried forcing myself up with 7hrs of sleep, then tried 8, 9, and so on and I just have no energy. All I want to do is go outside and work yet I cannot find the motivation. I put on 70lbs between 2009-2010 and I was eating pretty decent as well as excising. I have also been experiencing flashes of numbness in my hands in feet as well as tremors/twitches in those areas mostly (there's a near constant small shake to my hands), but do get them on occasion in my eye lid, back, arm, and thighs. My pulse hangs around 125 but shoots to over 160 just walking outside to my car and back. My BP is also usually high. I get heart palpitations and will become short of breath, but it only lasts around 30secs to a min. I frequently feel dizzy and my vision will tunnel out. I feel like I am going to collapse and I think if I didn't immediately sit or lay down (and sometimes I'm already sitting when it happens and I just try to focus till it passes), I would. I'm frequently upset to my stomach and have gastrointestinal issues (boughts of diarrhea for months on end, then extreme, sudden need to go even when movements are normal). I also just in general ache all over (sometimes just in total pain) and when I don't have a migraine, I usually have a headache. I am plagued by earaches from fluid in my ear (I have had both eardrums rupture, so it might just a side effect from that that didn't show till a few years ago). There is fluid there every time I go to the clinic, but they only bother with it when it is infected. I do have hearing loss. My eye sight has also been going downhill. I was also low on vitamin D even though I take multivitamins every day. I have ZERO libido. It is painful to have intercourse (stabbing pain) and I just can't get in the mood for it. I suffer from frequent UTIs and now I have been getting kidney stones (I was hospitalized for sepsis due to kidney infection when I was in the 1st grade). I'm also having memory issues. Then I have some misc issues that I don't think are related to anything but bad luck - but your never know (plantar warts, frequent skin cysts, flaky nails, dry hair, recurring sore on roof of mouth, frequent glassy eyes, some facial hair and "beastly" arm hair, dry skin, swollen ankles... I believe that's all)

In good humor, I think this is absolutely ridiculous and if someone told me they had all these issues I would have been like "Yeah, right", but now here I am. None of these are exaggerated nor symptoms of a hypochondriac who is using Google too much. I actually thought all of this was just normal (yes palpitations included) and ignored what I could, but it is too much now and I also know it is not normal. This all has been effecting me so bad. I sit and cry because I don't have the energy to do basic things in my life and I feel so awful all the time. I'm the kind of person that just tries not to show how bad things are with me, but it is getting to be to much. I don't know where else to turn. Any help is so greatly appreciated.

I know that is a lot, but it's the truth. I don't know which ones are explained by things like being overweight, genetics, etc. , but in my opinion, there are too many issues for there not to be an underlying problem to explain some of them. I just would like some ideas to take to my dr. so that we have a direction to go in. I would love to see a specialist, but have no insurance, so it comes out of my pocket. I want to be pretty sure on something before I fork out the cash.

My latest thought is that it may be related to the Gardasil vaccine. Unless I have the date stated otherwise above, ALL of the other symptoms didn't start showing until around 2009. (Forgive me, I am horrible at remembering exact dates, but all estimates are pretty darn close) I got vaccinated 2007-2008. I had been sexual active, multiple partners, since I was 12 (I know, I know. I kick myself all the time) and was on birth control at the time of the injections. From what research I have done, this was not a real good idea (oh yes, I am SO beyond angry at all this issues with this injection. If you are exposed to HPV before the injection, it can raise your chances of cervical cancer by 44.6%. Not to mention all of the deaths and horrific life-altering side effects some girls are having. Makes me sick). I'm seeing a lot of side effects that link up with some of mine and, of course, some that don't. I'm not sure if this is it, but it seemed like a possibility.

I'm also thinking about seeing a specialist for hypothyroidism. I can't remember what exactly the numbers were, but I remember reading that the clinics consider a broader range normal, while specialists have a narrower range. I fell outside the specialist range but in the clinics. Of course, that might be a way to get money off normal people in regards to the specialist.

So, any ideas? I do really apprecatie it. Hopefully someone will have an idea I haven't thought of because I really would do anything to have my life back.

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9 Replies:

  • I am going through a similar situation myself some like symptoms but your seem pretty clear cut to me. Of course I am mostly going off of articles I have read and am not a medical professional in anyway but after researching my symptoms I would recommend going to the thyroid specialist if u can afford it. But if that may be a little ways off for you I would talk to your current Dr. again ask her for your thyroid numbers that would help us alot. You need your TSH, free T3 &T4 and the autoimmune test that goes with it. Its possible they didnt check all of those the 1st time especially if $is a concern. It is also possible that you have more than 1 issue happening as autoimmune diseases happen together sometimes. But start with the thyroid and go from there. Good luck!
    kadensmom 6 Replies Flag this Response
  • Could it be Lupus?
    Beth62 1 Replies Flag this Response
  • Thank you for the ideas. Sorry it took me a bit to get back on here. My boyfriend is in the process of getting a second job and it comes with full medical benefits for your significant other even if you aren't married. As soon as this is done, I am going to a thyroid specialist in a nearby town. I'll let you know what I find out. Thank you very much!
    mccourt 2 Replies Flag this Response
  • I also forgot to add to my last comment what my previous appointment came up with number wise. The only one they tested was the TSH and (I can't find that paper, but if I do, I will update this) it was just over 3, I think. I've got a check-up with them in the next couple months so if I don't have insurance by then, I will see if they won't go ahead and test all of them. I'm on some sort of sliding scale system with them when it comes to costs so I figure they might not want to unless I can somehow convince them I really am experiencing all of this. Fingers crossed for the insurance though that way I know for sure I got a pretty accurate test through a specialist.
    mccourt 2 Replies Flag this Response
  • Dr Sarah Myhill could help check out her free site at drmyhill.co.uk she specialises in unusual or hard to diagnose illnesses.First off, I am a 21 year old female and weigh 225lbs . I have had many health problems in the past few years and am at a loss. I'm one of those people who has to be drug into a drs. office and lately have been going of my own free will to try to find an answer. I have been unable to do so and I think if I could get a few ideas of what direction to head, it would really help. I used to be very active and always outside in the woods or on the river, but that has changed. I know it is a long list, but I was trying to include anything I could possibly think of no matter how small just in case it was of help. I have been check for hypothyroidism (numbers were off, but apparently not enough for my clinic to be concerned). I have been diagnosed with muscle spasms (they come and go. I was seeing a chiropractor for awhile) and migraines (several times a month). My biggest issue, in my opinion, is that I have no energy when I used to be extremely active. I have trouble going to sleep, then when I do fall asleep, I can stay that way for 15hrs and wake up still tired. I've tried forcing myself up with 7hrs of sleep, then tried 8, 9, and so on and I just have no energy. All I want to do is go outside and work yet I cannot find the motivation. I put on 70lbs between 2009-2010 and I was eating pretty decent as well as excising. I have also been experiencing flashes of numbness in my hands in feet as well as tremors/twitches in those areas mostly (there's a near constant small shake to my hands), but do get them on occasion in my eye lid, back, arm, and thighs. My pulse hangs around 125 but shoots to over 160 just walking outside to my car and back. My BP is also usually high. I get heart palpitations and will become short of breath, but it only lasts around 30secs to a min. I frequently feel dizzy and my vision will tunnel out. I feel like I am going to collapse and I think if I didn't immediately sit or lay down (and sometimes I'm already sitting when it happens and I just try to focus till it passes), I would. I'm frequently upset to my stomach and have gastrointestinal issues (boughts of diarrhea for months on end, then extreme, sudden need to go even when movements are normal). I also just in general ache all over (sometimes just in total pain) and when I don't have a migraine, I usually have a headache. I am plagued by earaches from fluid in my ear (I have had both eardrums rupture, so it might just a side effect from that that didn't show till a few years ago). There is fluid there every time I go to the clinic, but they only bother with it when it is infected. I do have hearing loss. My eye sight has also been going downhill. I was also low on vitamin D even though I take multivitamins every day. I have ZERO libido. It is painful to have intercourse (stabbing pain) and I just can't get in the mood for it. I suffer from frequent UTIs and now I have been getting kidney stones (I was hospitalized for sepsis due to kidney infection when I was in the 1st grade). I'm also having memory issues. Then I have some misc issues that I don't think are related to anything but bad luck - but your never know (plantar warts, frequent skin cysts, flaky nails, dry hair, recurring sore on roof of mouth, frequent glassy eyes, some facial hair and "beastly" arm hair, dry skin, swollen ankles... I believe that's all)In good humor, I think this is absolutely ridiculous and if someone told me they had all these issues I would have been like "Yeah, right", but now here I am. None of these are exaggerated nor symptoms of a hypochondriac who is using Google too much. I actually thought all of this was just normal (yes palpitations included) and ignored what I could, but it is too much now and I also know it is not normal. This all has been effecting me so bad. I sit and cry because I don't have the energy to do basic things in my life and I feel so awful all the time. I'm the kind of person that just tries not to show how bad things are with me, but it is getting to be to much. I don't know where else to turn. Any help is so greatly appreciated.I know that is a lot, but it's the truth. I don't know which ones are explained by things like being overweight, genetics, etc. , but in my opinion, there are too many issues for there not to be an underlying problem to explain some of them. I just would like some ideas to take to my dr. so that we have a direction to go in. I would love to see a specialist, but have no insurance, so it comes out of my pocket. I want to be pretty sure on something before I fork out the cash. My latest thought is that it may be related to the Gardasil vaccine. Unless I have the date stated otherwise above, ALL of the other symptoms didn't start showing until around 2009. (Forgive me, I am horrible at remembering exact dates, but all estimates are pretty darn close) I got vaccinated 2007-2008. I had been sexual active, multiple partners, since I was 12 (I know, I know. I kick myself all the time) and was on birth control at the time of the injections. From what research I have done, this was not a real good idea (oh yes, I am SO beyond angry at all this issues with this injection. If you are exposed to HPV before the injection, it can raise your chances of cervical cancer by 44.6%. Not to mention all of the deaths and horrific life-altering side effects some girls are having. Makes me sick). I'm seeing a lot of side effects that link up with some of mine and, of course, some that don't. I'm not sure if this is it, but it seemed like a possibility. I'm also thinking about seeing a specialist for hypothyroidism. I can't remember what exactly the numbers were, but I remember reading that the clinics consider a broader range normal, while specialists have a narrower range. I fell outside the specialist range but in the clinics. Of course, that might be a way to get money off normal people in regards to the specialist. So, any ideas? I do really apprecatie it. Hopefully someone will have an idea I haven't thought of because I really would do anything to have my life back.
    Anonymous 42789 Replies Flag this Response
  • Your post was long and I admit I didn't read it all. Sometimes less is more.Do you have a history of UTI's?http://kidney.niddk.nih.gov/kudiseases/pubs/nephrotic/#whatDo you need to see a dentist?MS is caused by siguatera toxin produced by a bacteria that grows in unheathy calcium. (Fish poisoning)Do you consume soda pop and aspartame?Donald Rumsfeld disease... and Lupushttp://www.rense.com/general33/legal.htmSee if any of that fits.
    Einstein 7 Replies Flag this Response
  • (1) Thyroid UK has good advice.And recognise the border line NHS average scale not being really normal as you say it is. They are advised by an endocrinologist who advises the royal family. Pay a nominal sum for their thyroid membership and data on thryoid.It explains things you need to know. Other thyroid societies often are similar to NHS guidlines which are recognised by many as too narrow a normal scale.(2) Dr Sarah Myhill site is free and has amazing advise. She is a very honest woman on such issues.
    Flyskyhigh 5 Replies Flag this Response
  • Look into PCOS (poly cystic ovarian syndrome). You have many of the symptoms. It is a gradual change that is related to many other medical issues and often misdiagnosed. Headaches, weight gain, insulin resistance, exhaustion/sleep issues, painful sex, panic attack type stuff, hypertension, depression, facial/excess body hair are all signs. 10% of women suffer a form of it. Irregular periods or infertility is the main sympton supposedly, but that part didn't happen to me until my 30s, even tho all this other stuff happened around your age (early 20s). You can see an Endocrinologist, get some tests and there are treatments. Proper diet, medicine, forcing myself to be active, getting lots of sleep and sunshine help me. There are hormones, supplements and medication you can take, depending on your tests. Extended release Metformin is the medication that helped me the most (stopped the crazy bathroom problems and lost 70# easily). Usually need a specialist to diagnose and treat this correctly if it is what you have.Good luck and well wishes.
    princess_brtz 1 Replies Flag this Response
  • Hi there, I am also frustrated with not knowing what my disease is after years of testing. They say I'm "normal", but I'm anything but. Enough about me, I'll make a separate post for my problems...From my studies it sounds like it could be a couple of diseases. Systemic Lupus sounds an awful like your symptoms (click on link to check; http://www.lupus.org/webmodules/webarticlesnet/templates/new_learnunderstanding.aspx?articleid=2235&zoneid=523 ). However, the fact that you were out in the woods often can also bring Lyme Disease to the forefront. Lyme mimmics many other auto-immune diseases (http://www.webmd.com/rheumatoid-arthritis/arthritis-lyme-disease), and, because many don't remember a tick bite, and don't get a fever and rash (as I suspect in my case), it can lead Dr.s down the wrong path.Apparently, to get a true diagnosis from the specific blood test sounds like it is rare. There are no solid tests to this day that can truely confirm one way or another, so it's frustrating, but you've got to at least try... Mine just came back negative, but my symptoms don't match any other disease!Let me know what you think.Yours in hoping for good health,Miss G
    missg2u2 8 Replies Flag this Response
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