The Darwin Exception

because it's not always survival of the fittest – sometimes the idiots get through

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We Have a Diagnosis!

Posted by thedarwinexception on March 7, 2007

The doctor from the clinic called last night. At like 10:00 last night, no less. Seems some of Paul’s test results were finally available to the doctor, and he wanted to let us know right away what the results were. He was very apologetic about the late hour, and he said he wouldn’t normally call at that time of night, but he wanted to let us know that Paul needed to get to a regular physician right away.

Apparently, Paul doesn’t have a thyroid anymore. At least, not a working one. The doctor said that his thyroid levels were so low in his blood sample that they didn’t even register levels. The doctor also said that this would explain a lot of his symptoms – the weight loss, the low blood pressure, the joint pain, the spitting up blood, the fatigue. And the doctor also said he had never seen anyone with such low levels walking around in the wild.

He said that I needed to make an appointment right away, and that if I couldn’t get in to see a regular doctor before Friday, that we were to go back to the clinic and he would give us an emergency prescription until we were able to get an appointment. But he said that Paul would still need to see a regular doctor immediately, since the medication has to be closely monitored and regulated until the right dosage is established. He said that with levels as low as Paul’s, it may even require a hospital stay of a few days to get the levels up quickly.  The doctor then said that without the medication, and if we had waited much longer for a diagnosis, that Paul’s blood pressure would have just continued to plummet until he had a heart attack or fell out. Which was good information for me, since now I can add “Fuck you, I saved your life” to my list of “phrases to use when Paul gets on my ass about something”.

So, armed with a list of “Family Practitioners” given to me by the triage nurse at the clinic, I started making phone calls, looking for a doctor that would be able to give me an appointment right away. No such luck. Seems that when you live in an area that is full up with people on disability, it’s not that easy to get a doctor who is “taking new patients”. None of the people on the list were. And I guess it’s even worse when you are on Medicaid, since a couple of the places I called immediately offered that if I had Medicaid they couldn’t see Paul, as “they were capped”. Paul finally called his boss to explain why he wasn’t going in to work today, and his boss said “Well, call my doctor, he sees new people”. So I called him, and yes, he is taking new patients, but the soonest I can get in to see him is 12 days from now. And I don’t really want to wait 12 days for an appointment. I’m afraid he’ll be dead by then.

So, I called the “Ask a Nurse” line the local hospital offers. I basically wanted to know if it was OK to wait the 12 days for my appointment, or if Paul needed the medicine before then and if I should go back to the clinic for a prescription. She suggested that “yes”, I should, and that if I couldn’t get to the clinic (which doesn’t open until 1 pm), I should go to the emergency room and that they would write the prescription. After they get him started, of course, I would still need to go tot eh regular doctor just to regulate the medication, but he did need to be on the medicine right way.

So I guess we’ll be headed back to the clinic today for the afternoon. I won’t go to the emergency room for anything but a dire emergency. I think that’s silly and a waste of money and resources unless it is a real emergency.

But, all in all, I’m quite glad we got a diagnosis, and that it wasn’t anything more dire than a bad thyroid. Even though the doctor was quite convinced that the condition is hereditary, and Paul’s mother was just as convinced that no one in the family ever had a bad thyroid. And I’m glad we went to the doctor’s before Paul had a stroke and had to be diagnosed as a result of that. And I think it sucks that we live in an area where everyone is on disability and taking up needed space in the doctor’s offices.

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16 Responses to “We Have a Diagnosis!”

  1. Veronique said

    Fuck, I HATE this country’s health care. But I’m so glad you’ve got a diagnosis and Paul is on his way (if he can get a goddamned appointment within the next two months) to treament.

  2. Hank said

    Well, I’m not a doctor, so I’m confused. Looking at a couple of medical web sites, losing weight rapidly seems to be a symptom of an overactive thyroid, not one that’s not working. One site did mention “Intellectual ability worsens”, which might explain Paul’s problems with the remote. Perhaps his thyroid was overactive to the point that it stopped working?

    Hope you get Paul back to normal soon.

  3. Julie M. said

    I’m SO relieved to hear that this is a thyroid condition, Kim! Give a hugs to Paul from me, willya?

    Also, let him know that — just because I’m the altruistic type and all — I’d be glad to donate the last pesky 30 pounds I need to lose to the Paul Weight Gain effort.

    No need to thank me… I’d be happy to help.;)

  4. Hactar said

    Well, it’s worse than a stubbed toe but not nearly as bad as you imagined. AIUI a prolific poster in AFC-A is on thyroid meds, so you won’t be alone in this. I’m sorry about his condition, but glad that you at least have a diagnosis and that it’s controllable.

  5. Mike said

    What a relief to know what it is, and that it’s treatable. I’d be happy to kick in a few pounds as well, just in case Julie’s 30 doesn’t bring Paul back up to par. I was thinking about Paul yesterday – I’m 5’10”, and when I graduated from high school, I weighed in at a relatively skinny 160. I can’t imagine someone Paul’s size weighing in at 130! Why weren’t alarm bells going off in his head? If I dropped down to 130 (or even back down to 160), I’d be scared to death, wondering what the hell was wrong.

    Oh well. At least you got him in to the clinic, and they were able to find the problem. Hopefully, he’ll start gaining some of that weight back shortly.

  6. Michele said

    Hi Kim,

    First of all let me just say that I’m a huge fan of your site. A friend clued me in a few months back and I’ve been hooked even since.

    I realize that you don’t know me and therefore may not put a lot of stock in what I might have to say, but coming from the vantage point of medical professional(RN in my previous life)there are a couple of things that you shared about Paul’s diagnosis that have been bothering me (to the point that I actually woke up dreaming about them this morning). As Hank touched on earlier, while thyroid problems do cause a number of the symptoms mentioned, typically weightloss, especially to the degree that you say that Paul has experienced, is seen in cases of hyperthyroidism; an overactive thyroid. If I understood you correctly the doctor told you that Paul’s thyroid was essentially not working causing his hormone levels to bottom out. I guess what’s bothering me is that while this condition would account for things like fatigue, weakness, dry/pale skin, hair loss, muscle crams, constipation, irritability, depression, memory loss and intolerance to extreme temperatures (generally cold), a low or non-functioning thyroid usually causes weight gain. In addition, some of his other symptoms, such as the spitting up blood, and anemia are not things that are usually associated with this diagnosis.

    I guess what I’m trying to say is that while yes, it’s very important to treat the thyroid problem that you know is a definate, if this were my husband I would insist that further testing be done to rule out additional problems.

    As another posted pointed out, anemia is almost unheard of in men Paul’s age. This accompanied by the blood in his sputum and in my opinion the unexplained weightloss, is reason for further investigation.

    This is just a thought (one of those things that seem to come out of nowhere from the recesses of your mind) but, you’ve mentioned the “Harley Barn” and it’s contents in a number of posts. Since I have no idea what this place looks like I may be stretching a bit here, but if this is a place where he spends a lot of time I’ve got to raise the quesiton…have you guys ever seen / had a problem with bats or birds in / around the barn?

  7. HI Michele –

    Thanks for your concern – hope we didn’t keep you up too long thinking about this!

    And yes, I’ve been doing lots of online research on all of this, and I agree there’s still lots of unanswered questions. I still wonder about the anemia myself, since I know how much red meat and leafy green vegetables Paul eats, and anemia seems odd. And the spitting up blood thing bothers me, too – even though the doctor at the clinic seemed to think that was caused by the thyroid issues, I haven’t seen any reference to it at any of the websites I’ve looked at.

    I have a list of “issues” I need to discuss with the regular doctor, and I hope to get them all answered – and if it takes further testing and probing, well, that’s what will have to happen.

    My own “secret” major concern right now is “why this happened’. Paul’s mother is insistent that there’s noone in Paul’s family that has ever had this condition, and I’m concerned that something *else* caused the thyroid to fail – something associated with the anemia and the spitting up blood, and the other symptoms he has that can’t be explained by the thyroid.

    And I don’t think there’s any bats or birds in the Harley barn – if I had ever seen a bat in there, I’d never go back in the place – but one of Paul’s jobs is on a produce farm, and who the hell knows what he could have been exposed to there – they use all kinds of chemicals and industrial fluids. *That’s* what I’m worried about – you know, if something nasty enough to cause a nationwide recall can get into the spinach – what are the workers being exposed to? And Paul is forever in the machines – that’s what he does – he fixes all the machinery. So when I think “blood and anemia”, my mind instantly turns to “what kind of crap are they using over there?”

    But I agree with you – there are still some pieces of the puzzle that aren’t falling into place. But I allowed myself to be lulled just a little into a sense of security with some kind of diagnosis, mostly to alleviate some of the tension and worry I’ve been feeling. But I have a feeling there’s more to this, and I hope when we get to see the doctor, I can bring up some of these concerns and find out the rest of the story.

    Thanks for your kind words and thanks for reading the blog – I appreciate it. The support and concern and kind words here and in email that everyone here has shown has been a huge help to me.

    Thanks

    Kim

  8. Hatpin said

    Just to add my $0.000002-worth:

    I’m glad others pointed out the contradiction between weight-loss and hypothyroidism – it was the first thing that struck me too. Also glad that Paul has a caring and intelligent wife who’s got the wisdom to investigate further and do it properly.

    I’d offer some pounds of flesh myself, but I need to gain weight not lose it (D-I-V-O-R-C-E does that to people), so instead, just have some kind thoughts and best wishes. And try not to worry too much, Kim.

  9. Michele said

    BINGO…DING…DING…DING…(I wonder is this is what “House” feels like when he get’s that “look…lol). Ok, so you say that one of his jobs is at a produce farm? So we’re talking Chickens? You need to have Paul checked for histoplasmosis. Histoplasmosis is an infection of the lungs caused by breathing fungus filled air…a fungus that lives in chicken houses, lofts, chimneys, attics, etc.

    Symptoms of histoplasmosis include chronic ( on again off again) fever, difficulty breathing, fatigue, joint / muscle pain, night sweats, anemia and weightloss. Some patients also experience red lumps on their extremidies and swollen lymph nodes, an enlarged liver or spleen, since these are areas of the body that hold waste until it can be eliminated from the body.

    It’s a realively easy infection to treat but if not treated it can lead to some pretty serious long term health problems.

    Best of luck! Please keep us informed and know that we’re thinking about you guys.

    Michele

  10. Michele said

    Out of curiosity I just did a search on histoplasmosis and found the following link:

    http://www.wrongdiagnosis.com/h/histoplasmosis/symptoms.htm

    You may want to check it out. One of the symptoms that seemed to go unmentioned in some of the other articles was adrenal insufficiency…such as hypothyroidism…it appears that is is also a symptom in more advanced cases!

  11. Michele said

    Sorry…it’s me AGAIN. I re-read your earlier post and realized that you said “produce farm”, not “poultry farm, so please excuse the chicken reference…although w/ a large number of fertilization processes still including excrements from chickens and other livestock I stand by my previous suspicion.

  12. Greg Goss said

    If it’s just the thyroid levels, that can be treated long-term. My skinny sister was diagnosed with having too much thyroid activity and the standard treatment for that was to kill off the thyroid and take supplements the rest of her life.

    But weight loss is associated with too much thyroid activity. I thought that too little would head the other way.

  13. Bill T said

    My reading is that Paul lost 100lbs in less than 6 months. There are very few things that can cause this, and it is not type2 diabetes, hypothyroidism, or histoplasmosis. I don’t know what the Clinic doc was thinking, but Paul needs to been seen quickly by a doc with good access to various specialists.

    Unfortunately, for someone without top-grade corporate insurance it is a matter of luck as to the level of care they get. I am in the business and I still can’t find a local internist to accept my insurance.

    I don’t think that Paul (or Kim) would benefit from further speculation as to his diagnosis. What he needs is swift access to multi-specialty care. (Personally, I would just lie to get admitted thru the ER of a teaching hospital.)

  14. Michele said

    Kim,

    I hope you will forgive me if I appeared to be a little over zealous in yesterday’s post. Please understand that the intent was not to diagnose Paul’s condition but rather an attempt to raise questions and express concern in regard to the apparent vacuities in his previous diagnosis. I only raised the question of histoplasmosis because of the possibility of dispensation associated with his job and the degree to which the condition is under / misdiagnosed.

    I think all here would agree with Bill T. in his admonishment to do what you have to do to cut through the bureaucratical bullshit and get Paul to a multi-specialty facility where all of his health issues can be evaluated and addressed.

    Again, best of luck. Our thoughts / prayers are with you.

  15. Hactar said

    Actually, you say that he worked at a farm. I’d look at some of the chemicals to which he may have been exposed.

  16. Amy said

    I’d get to an endocrinologist in Burlington or elsewhere. Malone does not do well with the medical stuff. A specialist can get you started in the right direction and then collaborate with a local doctor for the treatment side of things. If you are worried or not sure about a complete diagnosis, please see a specialist! I grew up in Malone, and now live in Potsdam, but in between lived near a great hospital in Dallas, and then near Dartmouth-Hitchcock Medical Center in NH. Unfortunately, there is no comparison between medical care there and here. Get help at a bigger/better facility. My husband had a hyperactive thyroid as well. Luckily, it was pretty cut and dry, but he had a great team of doctors at DHMC checking him for EVERYTHING.

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