Unexpected test results... I would be grateful for some guidance

[Bluebell]

Osteopaths and Naturopaths etc cannot do the testing that you need doing to make sure that you don’t have one of the serious diseases that cause high CA-125.

What I meant by "Would it be too roundabout to first consult with some kind of integrative doctor who would have the ability to bear in mind all my other test results (even, if possible, the genetic mutations - though that is probably too much to ask)?" was the sort of MDs who go through Dr. Weil's Integrative Medicine program at the University of Arizona medical school (http://integrativemedicine.arizona.edu/about/index.html) --
or the sort of thorough doctor that Dr. Mirza the thyroid specialist who wrote those comments in the BMJ seems to be (spending a long time with the patient, getting the complete picture).

I think osteopaths can order all tests and prescribe all medicine and so forth in the US - they are considered full physicians here, as far as I know. In other countries, the profession is a bit different (Wikipedia tells me, anyway!)

I grew up in the US, but I lived in Europe for many years, so I am not familiar with the intricacies of the current American healthcare system. It looks as if Americans directly go to gynecologists, podiatrists, opthalmologists, etc. without going through a GP first (at least, if they aren't locked into an HMO or PPO set-up with their health insurance plan), but I can well see that going to an endocrinologist or oncologist directly might be incorrect and too bold. Not that I wouldn't be one to try!

 

[heapsreal]

my experience is that specialists seem to be too zero'd into one thing and cant seem to put together other issues involved. Also as soon as they get a sniff of cfs/me alot tend to just leave u lumped into that basket. I think an intergrative doc is a good start, plus they maybe in touch with specialist who are more sympathetic to your cause??

 

[Sushi]

Bluebell

Yes, in the States (unless you are tied by an HMO or something) you can usually go directly to a specialist. And osteos are full physicians. But for some specialties, like oncology, you would normally get referred by some sort of primary care doc.

Sushi

 

[rlc]

Hi Bluebell, re

I grew up in the US, but I lived in Europe for many years, so I am not familiar with the intricacies of the current American healthcare system. It looks as if Americans directly go to gynecologists, podiatrists, opthalmologists, etc. without going through a GP first (at least, if they aren't locked into an HMO or PPO set-up with their health insurance plan), but I can well see that going to an endocrinologist or oncologist directly might be incorrect and too bold. Not that I wouldn't be one to try!

I don’t live in the US, so I’m not certain of the ins and outs of the medical system there.

My concern is that the majority of diseases that are found in the list of causes of high CA-125 found here http://en.diagnosispro.com/differential_diagnosis-for/ca-125-antigen-titer-lab-increased/11646-154.html Are very serious and often potentially fatal diseases, if they are not diagnosed and treated quickly enough. So my opinion is that this has to be done first and things like potential thyroid problems can wait. Sure it might be a false positive result or caused by something that’s not potentially fatal like endometriosis, but your result was massively above reference range.

A GP will be able to assess you and get you to the right specialist or a hospital very quickly. And then you will have the answer and treatment very quickly if needed. If you can get straight to a specialist then do so.

Many of the integrative medicine specialists have long waiting lists, so this could lead to a delay. And not many of them are Oncologists as well.

Once you have sorted out what is the cause of the CA-125 result then you could go to Dr Mirza or an integrative specialist to sort out the other failed test results, if it can’t be done by a GP.

From my understanding of what Dr Mirza is saying, your result

My TSH is >2.5 and my Peroxidase result (if a result is the same as a titer, which I assume it is) is >10,

The result is the same as titer.

I think he would evaluate you and consider treatment. Medicine is very complicated so I can’t give an exact answer as to what he would do.

He says

In such patients with TSH levels between 2.5-5, we treat only during pregnancy, in patients with significant hypothyroidism symptoms who have goiter or thyroid nodules and have elevated TPO antibodies. These features usually indicate that hypothyroidism is almost inevitable.

If the patient has a TSH level between 2.5-5 but asymptomatic and has not palpable thyroid nodules, a watchful waiting is warranted.

You appear to have some significant hypothyroidism symptoms and elevated TPO antibodies, not sure if you have been checked for Thyroid nodules? So if he found that there were no other medical causes for your thyroid symptoms like low body temperature, then I would imagine that it is very possible that he would treat you.

It sounds to me like he really knows what he is doing, he is an Assistant professor of internal medicine at Auburn community hospital NY and an endocrinologist, if I lived in the states I would certainly be going to see him.

All the best

 

[Bluebell]

My concern is that the majority of diseases that are found in the list of causes of high CA-125 ... Are very serious and often potentially fatal diseases, if they are not diagnosed and treated quickly enough. So my opinion is that this has to be done first and things like potential thyroid problems can wait. Sure it might be a false positive result or caused by something that’s not potentially fatal like endometriosis, but your result was massively above reference range.

Thank you, rlc, for your concern and your correct emphasis on what matters most. I do share your serious view of this particular CA 125 test result.

Because I presented such a multi-faceted situation at the beginning of this thread, and asked about many different areas of health and testing, I am carrying on the parallel conversations with each commenter here as they unfold -- about the topic that the commenter has knowledge of and interest in. Each topic I mentioned is important to me (even the shallow ones like how ugly my thumbnails look and why my hair is all falling out! ) but there is definitely a ranking of how important they are in terms of their potential to cause immediate, serious harm.

Because it's the start of the weekend, there isn't anything I can do about making a doctor's appointment until their offices open on Monday, so I am reseaching what I can this weekend, and thinking about the various ways I can approach the multiple health concerns that my test results uncovered.

My constraints are that I don't have any health insurance, medical care is expensive here, I don't have much money, I do not know anything about the limited selection of doctors in my area, and I live in an out-of-the-way place, so I can't go to see doctors in any of the major metropolitan cities, let alone in New York state (like Dr. Mirza), California, etc.

If I really have cancer, I actually don't know how I'd pay for the treatment. I do not live in a state that has a program for adults who are childless and who can't afford medical care. Even the US government's national program closed a few months ago. I'm not expecting that the diagnosis is going to turn out to be that bad, but if it does, I am not sure what I'd do. It's not like I can just go to any doctor, have any tests, and go into any hospital. I'd have to make some hard decisions about how much treatment I would seek, and how much risk I would take with my life. I'd probably have to go bankrupt, although I have prior student loans (that are not discharged in bankruptcy), so that would be tricky. I am not trying to be dramatic here, I'm just saying this would be the reality, if my most important health problem turned out to be something very expensive yet necessary (to keep living) to treat, like many forms of cancer are.

I don't want to put the cart before the horse though, because the reason for my incredibly high test result might be something that one can live with, like pelvic inflammatory disease.

Or it might be something that can wait 9 months before getting treated. The reason that 9 months is significant is that the new healthcare law, which is sometimes referred to as "Obamacare", comes into effect on January 1st (unless some of the opposing politicians do something dramatic to stop it -- and some of them are trying to do this!), and every American, no matter if they have a job or not, will have to be covered with some kind of health insurance at that time. Then, there is a 3-month waiting period for any pre-existing conditions to be covered by the new system, so actually I couldn't get treated for any medical problem that I had before January 1st 2014 until April 2014 -- so, 9 months from now. What complicates this is that some states are refusing to provide health insurance coverage to adults who don't have children and who make under a certain salary in their job (or who do not have a job) even under the new law, and there was a mistaken legal loophole in the law that lets the states have the power to cut off that group of vulnerable people from the benefits of the new law, so that is kind of an unknown factor right now, for those citizens -- who number in the millions of people, so it's significant. My state is one of those states that is refusing to cover that group of residents even after the new healthcare law goes into effect. However, the national government is probably going to set up some kind of national secondary type of system for those forgotten millions of people, if they can't have any healthcare insurance from their own states starting in January 2014. Not knowing what is going to happen in 6 months' time could make deciding on the direction to take, in what might be a long healthcare journey, difficult right now.

One good option for me to take in the immediate future, which someone suggested above, is to take the CA-125 test again (on my own), to make sure that the result is the same and it wasn't a fluke result, before I make other choices based on it.

A United Kingdom website (patient.co.uk) says that a pre-menopausal woman with a really high CA-125 result (over 200) should be immediately referred to a gynecologist (although it is unclear to me if they mean that the patient also must have a palpable abdominal mass, or if the result's being over 200 is enough), and in the US, a woman can go straight to a gynecologist and use him/her as her primary doctor/GP, so that might be what I should do regarding the CA-125 result, to eliminate the double cost of having an appointment with a general GP and then having him/her tell me that I need to go discuss the very same issue in a second appointment with a gynecologist. Most of the cancers, tumors, and non-malignant conditions that the CA-125 test detects are related to gynecological issues, so I expect this is what I will try to do - see a gynecologist who is happy to serve also as a woman's main GP, and approach him/her with all my problematic test results (in his/her capacity as a GP), most importantly the Ca-125. I doubt that I'd find any gynecologist in my region who is au fait with the methylation/genetic stuff.... but I know that's probably something I'll be on my own with anyway, no matter what. I'll think about it over the weekend.

The good thing is that the US health care system is so dysfunctional now that most everyone admits it, and it's my impression from afar that doctors do try to help people save money and protect themselves from being beaten down by "the system" if they can. Even the traditional, mainstream opthalmologist I saw earlier this year said to me that the nearby hospitals who do the MRI scans are "crooks" and massively overcharge for these scans, so he said if I didn't have health insurance, I would need to be careful about how I made an appointment for the scan, pay cash up front, and make sure I got in writing what the charges would be, before I even entered the hospital.

In order to narrow down my potential medical problems and which sort of doctors I probably need to see, I can also take a 4-sample saliva cortisol test on my own, to see if my cortisol is low or high, because that might tell me if I've got big problems with my adrenals (requiring an endocrinologist, probably) versus only medium problems with either the adrenals/thyroid/something else (maybe giving me some time to see if I can make things better on my own via supplements and lifestyle changes).

-----
Up to two days ago, I thought all this was mainly about losing some of my vision, trying to get some of my optic nerve cells working again by using a methylation protocol involving "real" B12 and folate, and the relatively high possibility of developing multiple sclerosis in the future (the chance of that is 75%, if what I have now is optic neuritis), but suddenly the test results show that I don't have low B12 or folate AT ALL, I may not even have hypothyroidism which I have thought I've had for many years, my iron deficiency seems to be better now, I seem not to have celiac disease which I was kind of worried that I really did have (and 23andme told me that my genes indicate that I have 3 times the risk of the average "European" person to have celiac); while I have something possibly pretty darn bad going on with my adrenals, my Vitamin D is in the doldrums, and I might have some kind of cancer, tumor, liver disease, etc. wow! It is a lot to wrap my head around. Though I still have defective vision and those chances of having multiple sclerosis.... so one day, I do need to have an MRI scan, but I'll be waiting the 9 months until April 2014 for that, probably.

----
I am foggy and tired now - and I don't know if this message has sounded whiny -- that is not my intention! I don't feel in the least bit sorry for myself. I'm a little worried, but mainly I am just so grateful that these lab tests are available, that modern medical treatment and knowledge are so good, that we have such an amazing resource like the internet, that there are international communities set up around important issues like this website is, and that I am safe and warm and well-fed tonight and for the near future, in contrast to the dire situations of so many in my country and around the world, who have very little, and are unprotected and facing so much hardship and maltreatment. (Sorry if that sounds maudlin and overly dramatic - just being a bit American )

---
Thank you so much to everyone who has commented here -- I am learning a lot from you, and am thankful for the information and the time you have shared with me.

 

[caledonia]

If I moved on now to methylation (via a supplement protocol appropriate my genetic results) could I maybe skip getting into the thyroid medication over the next few months? I've been hypothyroid practically all my life (it has seemed like!) and I could wait a few more months on that issue, if sorting out the methylation would also fix it, at a higher level.

Yes, I was thinking of this after I posted. Glad you brought it up. You might get on a med only to need to get off again. Rich Vank reported several people who needed to discontinue their thyroid meds. Mine has dropped in half. I fully expect as I crank up methylation more (I'm going super slow), that eventually I won't need any med.

One other point, mercury and gluten could also be involved in thyroid problems, so those would be something to look at too. The gluten thing is easy - switch to a gluten free diet. After you start methylation, you should start detoxing mercury. Mercury and other metals can also be held by gut bacteria, so you should look at the gut too.

On the other hand, sometimes the body needs some help in propping up certain areas while other areas are healing. So that would be an argument for trying a med first. Also, there's no guarantee that methylation and going after mercury/gluten will completely heal the thyroid.

 

[Valentijn]

I'd probably have to go bankrupt, although I have prior student loans (that are not discharged in bankruptcy), so that would be tricky.

Unless you have a cosigner, all student loans can be discharged in bankruptcy under the right circumstances. Federal ones will even go away with just having a chronic disability which won't go away and makes it impossible to work (I think they look at the past or future 5 years regarding duration or likely duration of the disability). For others, it's a matter of doing the bankruptcy and showing that making the required loan payments would be an undue hardship (the loan company might get a reprieve if they work with you to offer something affordable in your circumstances).

I haven't done any of this, but looked into it pretty thoroughly - I'm US$150,000 in debt from law school There's a lot of bad misinformation about student loans not being dischargable in bankruptcy. In law school we even had professors telling us we'd get disbarred if we filed for bankruptcy, etc. A big load of BS

 

[Bluebell]

Dear Caledonia,

Rich Vank reported several people who needed to discontinue their thyroid meds. Mine has dropped in half. I fully expect as I crank up methylation more (I'm going super slow), that eventually I won't need any med.

That is so encouraging to hear, about your meds dropping by half so far!

It really sounds like super slow is the way, that seems wise.

One other point, mercury and gluten could also be involved in thyroid problems, so those would be something to look at too. The gluten thing is easy - switch to a gluten free diet. After you start methylation, you should start detoxing mercury. Mercury and other metals can also be held by gut bacteria, so you should look at the gut too.

This raises several questions for me --

a) Do you think that the results of my celiac lab tests (all were negative) indicate that gluten is not a problem for me, or could gluten still be a problem for me (in a non-celiac way --which I have read a little bit about, but have not investigated)?

b) When you say to look at the gut, are there certain tests you would recommend?
If so, which would be the least expensive tests that would still give me valuable information about what is going on in there?
And what would I be looking to check, regarding the gut? Bacterial colonization, yeast, parasites, problems producing bile?

Something is definitely wonky with my digestive system. It has always been slow and ponderous, but lately some of my walnut-sized stools have floated instead of sinking, and they are often clay-like and pale in appearance, which I guess indicates possible lack of bile or possible malabsorption.
(Additionally, I am wondering if the abnormal stools might be related to whatever health issue is causing me to have a very high result on the cancer antigen 125 test, which can indicate a serious problem with the pancreas, liver, bowel, etc., apart from the female reproductive system.)

On the other hand, sometimes the body needs some help in propping up certain areas while other areas are healing. So that would be an argument for trying a med first.

Yes, some buffetting and support at various junctures could encourage healing that is faster and that requires less energy expenditure (not repeatedly taking 2 steps forward and 1.5 steps back due to stumbling blocks).

The tricky thing is the expert knowledge and monitoring that is required in managing the process, if powerful medication is used. If one doesn't have an open-minded, patient doctor overseeing it, and the wherewithal to have frequent checkups, maybe using medication to bridge some gaps could create another level of complication when the gaps start closing up on their own and things get over-powered.

Hmm....

After I have a bit more information gathered, I *should* (although I'm not sure I would ever have enough biology knowledge to do so!) make a diagram of the things that I can affect myself without a doctor's help, and try to figure out how tweaks in one area might benefit other parts of the system(s).

For example, there is no question that I should immediately begin to increase my intake of Vitamin D3 (I was already taking 2000 iu a day, yet I am deficient), and to get more outdoors sunlight exposure, because having more Vitamin D should help my body in many ways.
And, after studying the possible complications, I could start to take a modest amount of over-the-counter DHEA, since I am low in that, to see if it helps something.

[I wish the diagrams of the methylation system and other internal systems didn't look to me like a fantastic jumble of tangled yarn or the innards of a sports car engine. I don't know a piston from a crankshaft - basically I know how to fill a gas tank and turn a key in the ignition.
...Man, I should have tried to marry a doctor! Not for his yacht or whatever, but so we could have methyl group or hormone pathway pillow talk. ]

 

[Bluebell]

Unless you have a cosigner, all student loans can be discharged in bankruptcy under the right circumstances. Federal ones will even go away with just having a chronic disability which won't go away and makes it impossible to work (I think they look at the past or future 5 years regarding duration or likely duration of the disability). For others, it's a matter of doing the bankruptcy and showing that making the required loan payments would be an undue hardship (the loan company might get a reprieve if they work with you to offer something affordable in your circumstances). I haven't done any of this, but looked into it pretty thoroughly - I'm US$150,000 in debt from law school There's a lot of bad misinformation about student loans not being dischargable in bankruptcy. In law school we even had professors telling us we'd get disbarred if we filed for bankruptcy, etc. A big load of BS

In the past, I have seen individuals' reports on financial forums (mainly-intelligent forums, not the nutty ones!) that this stuff is really tricky, and the courts have cracked down on this in the last few years (not allowing it so much).

The chances of being successful at it seem very, very small; although, like in many aspects of life, it would help if one were oneself a lawyer!

Also, 75% of my loans are private and had a cosigner, so I'm not in a position to do it.

----
And I would hate to contemplate bankruptcy of any sort - it would be a worst-case, no-other-option scenario.

----
I can imagine that for those in other countries, the US way of doing things (the high cost of education, high cost of medical treatment) sounds a bit crazy, and the decisions people take in the US about how to plan their lives may look unwise if some of the good reasons behind them do not even come into the equation in one's own society.

----
If I did have something serious wrong with me, depending on life expectancy and treatment scenarios, I could well see deciding not to treat something malignant (at least, not to treat it with expensive high-tech medical care), if there weren't great outcomes for it anyway.

I don't have a partner or kids, I've had an amazing life, and I'm no spring chicken, so it would be okay with me to die sooner rather than later, if that's how things go.

I'm curious about what might be next, anyway!

 

[rlc]

Hi Bluebell, re

I am foggy and tired now - and I don't know if this message has sounded whiny -- that is not my intention!

Don’t worry your message is not at all whiny, you have had a major shock to the system, your test results have ruled out things that you thought might be wrong and raised the possibility of other potentially serious problems.

The good news is that you have failed some tests which means there is evidence that can be used for further testing, that should soon lead to finding out what is really going on.

Unfortunately you have the bizarre US medical system to deal with and all the problems that stem from not having insurance.

I cannot advise on how to get round the US medical system, as I do not live there. However there are many kind knowledgeable US patients on this site, who I m sure will help you find ways to get treatment.

A word of caution on the 4 sample saliva Cortisol test, you say you are a night owl, Cortisol patterns reverse in shift workers and other people who are up all night. So you are very likely to get results that say your Cortisol levels are low in the morning and higher at night, which makes people think they have adrenal problems when they often don’t. The saliva tests although they have science behind them, are seen by many doctors as worthless alternative tests and they are likely to ignore any results.

The serum morning Cortisol test is probably a better option, you will still get lower than normal results if you are a night owl, but doctors will take this test result seriously and if it is low, will do other tests such as ACTH stimulation test to confirm if you do have adrenal problems.

Vitamin D deficiency is very easily cured, but you should have a Calcium test before taking large amounts, because if calcium is high you may have diseases that you are not supposed to take vitamin D with as it can damage your health.

I see you are on 2000iu of D3 a day, new The vitamin D council recommends that adults should have 5000iu a day and more if deficient see http://www.vitamindcouncil.org/about-vitamin-d/how-do-i-get-the-vitamin-d-my-body-needs/

There is a lot of very useful information on this site about co factors etc.

Do you know the name of the finger nail condition? Some finger nail conditions can really help in finding the right diagnosis.

If it is not possible to see a doctor in the very near future, then if you can get the CA-125 test repeated, this will at least get you more evidence for when you do get to a doctor.

Sorry I can’t help you with the US medical system, but if you have questions on medical issues I will gladly look things up for you and see if I can help in any way.

All the best

 

[Ema]

If I really have cancer, I actually don't know how I'd pay for the treatment.

Don't forget that there are patient assistance programs offered by drug manufacturers for under or uninsured patients. Many hospitals also have charity departments and will write off large portions of bills if you work with them. In some ways, it's better to be uninsured totally than underinsured because you will likely be eligible for more assistance.

Also, Valentijn is right...student loans can be discharged due to disability. They use basically the exact same definition as social security so if you've been approved for SSDI, you should definitely apply for discharge. It's a tedious process as one might imagine but there is an ombudsman that can help if you get stuck.

Ema

 

[Gypsy]

Bluebell

Here are a few links to free/ low cost clinics which may help with the immediate concerns of your test results, i.e. cancer screenings. There are also charitable hospitals and ways to get free or low cost meds based on your income- you just need to search them out and often hospitals have sliding scale payments for low income or people without insurance. There are actually a lot of unknown resources that research hospitals offer for low income, uninsured or the underinsured, but like I said you have to ask because often the info is not readily available. So sorry for all you are going through and I hope everything turns out for the best. I would say to do everything you can to get a thorough cancer screening, and gynocological checkup, free women's health clinics would be your best bet if uninsured. They should also be able to help with possible thyroid problems if medications are needed.

http://www.needymeds.org/free_clinics.taf

http://findahealthcenter.hrsa.gov/Search_HCC.aspx

I don't know what state you live in, but you can also google "find a free womens clinic" + your state. I was shocked to see how many clinics in my area accept uninsured for free/ low cost. The first link, needymeds, pulled up a ton of clinics in my area.
P.S. If you get a medical bill you can not pay, never be afraid to call them and say "I am unisured and have no way to pay this bill, or this amount". MANY labs, hospitals, doctors, will drastically cut the bill automatically.

 

[Sushi]

Hi Bluebell

Sorry I haven't read the whole thread but wanted to throw in a couple of comments.

Supplementing Vit D--even with your low test result--could be tricky. Some of us with chronic diseases have low Vit D 25 (which is what they would have tested in you) and high Vit D 1,25. Supplementing without testing Vit D 1,25 could significantly raise the 1,25, and if your value for that is already high, this could be dangerous. High Vit D 1,25 is associated with high calcium

I have also been able to cut out my thyroid meds after treatment--which includes methylation treatment. I actually became very hyper-thryroid taking my fairly low dose of armour thyroid, so this is something to watch with methylation treatment.

And I used to work in hospitals--their bills are very negotiable! They know that they will have to simply write-off the costs on a certain percentage of patients--because the patients can't pay. This makes them open to negotiation.

Very best wishes,
Sushi

 

[Ema]

Wow, Bluebell! It sounds like you've been through the ringer here. I commend you on your persistence and objectivity in the face of a very frustrating tangle.

I see two common linkages between your symptoms - the nails, tendons, eyes, lips all suggest some sort of connective tissue disorder. Connective tissue disorders are a hallmark of Lyme. If it has been 20 years since you were tested, I would seriously consider pursuing an Igenex test for Lyme. It's about $150 for the two Western Blots.

Second, with your history of viral infections, I wonder if you've been tested for the big 3 - chronic EBV, CMV, and HHV6. If those come back highly elevated, I would also consider testing your IgG level, both total and subclasses.

In my own personal, non-medical opinion, I think you have the beginnings of autoimmune thyroiditis (Hashimoto's). I think that explains why your TSH has varied a bit over the years as well as the presence of some antibodies.

I think you are likely functionally hypothyroid as well. Your FT4 is reasonable (though could be a bit higher). I am going to make a leap and guess that your FT3 is low (FT3 is actually the more important T3 test, I hope you can get this one in the future) and you are preferentially converting all the majority of your T4 to RT3. I am guessing this is happening because of infection.

So with those two scenarios put together, I would be hesitant to recommend thyroid hormone supplementation to you until you at least ascertain if you have a multitude of infections which would cause your body to want to turn down the metabolic rate. It's really hard to overcome that in my experience with thyroid hormone alone.

I would also consider pursuing further gluten testing with Cyrex labs. They test for many different types of gluten antibodies rather than just a few (32 or so vs 4 or 5). I think there is a good chance that gluten is a problem for you and if the testing if financially prohibitive, I would consider just going gluten free without testing. Gluten is extremely inflammatory to the body and brain and it sounds like you can do without any further inflammation at this point.

As far as your adrenals, I agree that testing is a good idea but I don't see anything that definitely says poor adrenals to me...your electrolytes could be a bit higher but are not terrible, your alkaline phosphatase is a bit low again but that could be a zinc deficiency. The low DHEA could definitely be a sign of low adrenal function. I would definitely get a 4x/day saliva test (it's about $125 from ZRT/Canary Club and can be ordered on your own). I would also consider an AM cortisol blood test I would bet that it will be mid-range - ie low enough to cause symptoms but not low enough for an endo to take seriously.

The CA125 result is a real head scratcher. On the one hand, as you've read, it's not a very good screening test. In fact, it's a very bad test because the risks often outweigh the benefits. The American Congress of OBGYNS doesn't recommend it at all for the reasons you list. It would be a real shame to spend a lot of time and money chasing down a nonexistent cancer when it could just as easily be endometriosis or some other benign condition. But everyone is right that now that you have the result, you have no choice but to pursue further testing and investigations into it. I just hope you will be able to resist "investigational" "exploratory" surgery proposed by doctors who have no clue but just want to Cover Their Asses.

As far as a doctor, I think an integrative doctor is a great idea. You might also possibly consider a rheumatologist. An LLMD could also be a possibility. Or a gynecologist. Many specialties would work in my opinion as a place to start. Compassionate and curious would be my major requirements at this point with an open attitude towards alternative medicine but a firm grasp on allopathic care as well. This might well be an osteopath, a DO instead of an MD, though the skill varies here as well. You might well need some supplementation but I would be wary of any doctor that wanted to start an expensive supplementation regimen with you before getting some more concrete diagnoses.

I agree with Sushi's points on Vitamin D and I agree that you could increase it somewhat while avoiding megadosing.

I don't find your B12 results to be too high. My doctor likes to see serum B12 above 1000.

So to summarize, if it were me, I would do the following:

1. Lyme testing
2. Viral testing (chronic EBV, CMV, HHV6)
3. Saliva cortisol test
4. Investigate doctors in your area to find a good match.

I will look forward to hearing a progress report!

Ema

 

[Bluebell]

A word of caution on the 4 sample saliva Cortisol test, you say you are a night owl, Cortisol patterns reverse in shift workers and other people who are up all night. So you are very likely to get results that say your Cortisol levels are low in the morning and higher at night, which makes people think they have adrenal problems when they often don’t.

This is good to know!

I wonder if being a night owl is the result of an inherent adrenal maladjustment, however?

I am not up all night long, I naturally get sleepy around 3 or 4 am and get up at 10 or 11, if this schedule is possible for me to keep (usually it's not possible, when dealing with the rest of the world, jobs, and such!)

(I love being a night owl, and would not wish to be different, so I only find it a problem when having to adjust to the early-bird world, especially in my region, where an 8 am start is a late one, and insane people think it's a fun thing to have work-related breakfast meetings before the workday starts!)

=======

The saliva tests although they have science behind them, are seen by many doctors as worthless alternative tests and they are likely to ignore any results.

Ah-hah! Okay, that might change my mind about getting one done before I see a mainstream doctor.

=======

The serum morning Cortisol test is probably a better option, you will still get lower than normal results if you are a night owl, but doctors will take this test result seriously and if it is low, will do other tests such as ACTH stimulation test to confirm if you do have adrenal problems..

The below is not the stimulation test, I presume, just a measurement of ACTH as it normally exists in the blood. Would it be informative enough to be worth doing now?
http://www.privatemdlabs.com/lab_tests.php?view=search_results&show=725&category=14&search=acth#725

========

Vitamin D deficiency is very easily cured, but you should have a Calcium test before taking large amounts, because if calcium is high you may have diseases that you are not supposed to take vitamin D with as it can damage your health..

Is the Calcium, Serum test that I had as part of the Comprehensive Metabolic Panel the calcium test you are speaking of?

On that, I got 9.5 mg/dL (reference range 8.7-10.2). Does that mean it's okay to take the D3?

========

Do you know the name of the finger nail condition? Some finger nail conditions can really help in finding the right diagnosis.

Last year, I extensively reviewed dermatology websites and textbooks, and self-diagnosed my nails as having two simultaneous problems: "Beau's Lines" PLUS "Median canaliform dystrophy of Heller".

The Beau's Lines developed first, on my thumbnails. They got worse, and piled up on each other. Then, the "fir-tree like" pattern of fMedian Canaliform Dystrophy of Heller started down the middle of my thumbnails, in addition to the horizontal Beau's Lines. The Beau's Lines were very faint on my big toenails last year, but this year there is more of a slight wave to the surface, and in the middle of one toenail, there is actually a cavity in the nail that goes down to the nailbed, which was already present when the nail grew out from under my cuticle. Occasionally my thumbnails have those cavities in them too, already fully formed in the nail surface before it erupts from the skin cuticle. The toenails do not have the fir-tree effect down the middle of them.

My thumbnails are much worse than the nails in these photos, but it started out this way:
"When Beau's lines are present in all nails at a similar location on the nail plate, they are likely to have a systemic cause. They may also result from metabolic, inflammatory, or traumatic influences."
http://www.skinsight.com/adult/beausLines.htm

"Some other reasons for these lines include trauma, coronary occlusion, hypocalcaemia, and skin disease. They may be a sign of systemic disease, or may also be caused by an illness of the body, as well as drugs used in chemotherapy or malnutrition."
http://en.wikipedia.org/wiki/Beau's_lines

This is the point my big toenails are at. My thumbnails looked like this 2 years ago and have continued to get worse:
http://www.nailsmag.com/article/81742/what-are-beaus-lines

Another photo of mild Beau's Lines
http://www.mayoclinic.com/health/nails/WO00055&slide=6

"The finding of Beau’s lines may indicate previous severe illness, trauma, or exposure to cold temperatures in patients with Raynaud’s disease"
Nail Abnormalities: Clues to Systemic Disease
http://www.aafp.org/afp/2004/0315/p1417.html

page 7
http://www.acponline.org/about_acp/chapters/mt/hit_the_nail.pdf

Bilateral Thumbnail Deformity
http://www.jfponline.com/pages.asp?aid=6896

---
My thumbnails also have a second problem, Median canaliform dystrophy of Heller: "Fir-tree like ridging" down the middle of the nail.

See the photo in this article (just hover on it and it will get large)
"The majority of cases of median canaliform dystrophy are idiopathic"
"The management of such improperly understood nail disorders is quite challenging for a dermatologist."
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3505440/

"the etiology of this condition remains elusive for most affected individuals"
Familial Median Canaliform Nail Dystrophy
http://www.ncbi.nlm.nih.gov/pubmed/15839359

Median Nail Dystrophy
http://www.crutchfielddermatology.com/caseofthemonth/studies/l_2008_011.asp

Median Nail Dystrophy
http://www.stacommunications.com/journals/cme/2012/06-June/06CME_009.pdf

=====

if you have questions on medical issues I will gladly look things up for you and see if I can help in any way.

Thank you, that is so kind of you to offer.

 

[Bluebell]

Ema, Gypsy, Sushi,
Thank you for all the information about programs for affordable healthcare and the like!
I really appreciate it, and will definitely refer back to it, if going down that route that becomes necessary.

 

[Bluebell]

Supplementing Vit D--even with your low test result--could be tricky. Some of us with chronic diseases have low Vit D 25 (which is what they would have tested in you) and high Vit D 1,25. Supplementing without testing Vit D 1,25 could significantly raise the 1,25, and if your value for that is already high, this could be dangerous. High Vit D 1,25 is associated with high calcium

Do you think that with my Comprehensive Metabolic Panel result of Calcium, Serum: 9.5 mg/dL (reference range 8.7-10.2) that I could still have a high Vit D 1,25?

There is a test for the 1,25 form of Vitamin D at Privatemdlabs.com for $84 which I could do, if it's important to know before moving up to, say, 5000 iu a day on the D3.

I have also been able to cut out my thyroid meds after treatment--which includes methylation treatment.

That is really something! Great to hear.

 

[Sushi]

Do you think that with my Comprehensive Metabolic Panel result of Calcium, Serum: 9.5 mg/dL (reference range 8.7-10.2) that I could still have a high Vit D 1,25?

There is a test for the 1,25 form of Vitamin D at Privatemdlabs.com for $84 which I could do, if it's important to know before moving up to, say, 5000 iu a day on the D3.

Sushi said: ↑

I have also been able to cut out my thyroid meds after treatment--which includes methylation treatment.​

That is really something! Great to hear.

I know you don't have extra money for unnecessary tests--this makes these decisions harder! Your calcium does look fine.

We are all different in our response to Vit D--genetics of the receptors and other factors. I had been supplementing at 5000 iu for year or so when I first had both forms of Vit D tested. My D 25 was too high--102.8--out of range, and my D 1,25 was high, but still in range -- 53.2. Are you able to get your doctor to test both forms after you have been on 5000 iu for a while? Too high Vit D isn't great either!

Best,
Sushi

 

[Bluebell]

Reply from Ema

Ema, your post was just so incredibly helpful from beginning to end.

I will look into all the tests.

I did say to the doctor and physiotherapist last year when I had tennis elbow and plantar fasciitis that I felt my body's connective tissues had become suddenly less resilient, but they said it wasn't possible.

It sounds like my thyroid antibody levels were not so good, even though they were in the reference range.

I had tossed some issues, like all the thyroid stuff (apart from ReverseT3) and the negative celiac results, into the thank-God-these-are-not-a-problem-for-me-now pile, but I'll have plop them back into my wading pool of uncertainty!

(Of no importance whatsoever, but that winky guy is the worst winky emoticon I've ever seen. He almost looks menacing or half-crazed, and as if he's got a little paw sticking out of his eye socket.)

There is so much to look up and think about.

 

[Ema]

I wonder if being a night owl is the result of an inherent adrenal maladjustment, however?

Yes, absolutely. The pacemaker cells of the hypothalamus set the circadian rhythm for the body and send the messages to the peripheral tissues. Glucocorticoids play a huge role in the circadian systems.

Ah-hah! Okay, that might change my mind about getting one done before I see a mainstream doctor.

Saliva tests are extremely reliable...NASA uses them on the astronauts preferentially over serum testing. The literature consistently shows them to be reliable. They show not only the free hormone available but the rhythm across the day. I wouldn't trust any doctor that didn't understand how saliva testing should be used clinically. Thankfully, more and more doctors are getting it now.

The below is not the stimulation test, I presume, just a measurement of ACTH as it normally exists in the blood. Would it be informative enough to be worth doing now?

If you have low cortisol, two situations are possible - first, you have high ACTH and low cortisol. This means that your brain is screaming out for more cortisol and your adrenals are unable to comply. This is called primary Addison's.

Secondly, you can have low ACTH and low cortisol. This is called secondary adrenal insufficiency and it is a brain problem, not an adrenal problem, per se. The second scenario is much more common in those of us with ME/CFS. When it is subclinical levels, it can be called HPA axis dysfunction or the more commonly (horribly named) adrenal fatigue. There's nothing fatigued about the adrenals though. It's a brain problem.

So you can certainly test ACTH with cortisol and it can give you useful information. You can also test for 21-hydroxylase antibodies which can indicate autoimmune destruction of your adrenal glands. But honestly, I would do all these second to infection testing and saliva cortisol testing if it were me.

You get the email coupon for PrivateMDlabs, right? It's 15% off...


Ema