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

Bluebell

Senior Member
Messages
392
A "brief" background -

I won't go into everything, even though this will still be somewhat long!

I am female, mid-40s, not yet gone through menopause.

For my whole life, I've had some symptoms of slow metabolism, low body temperature, continued constipation, malaise, delayed sleep cycle/extreme night owl, migraines, allergies, low motivation, what-have-you.

I've always had painful periods with heavy blood loss.

In my early teens, I got mononucleosis. In my early 20s, I got it again (confirmed by blood tests both times). The second time, they said it was weird, because the test showed that I had a bacterial and viral infection at the same time.

In my late 20s, I lived in a place with a high incidence of Lyme Disease - I started having some of the typical symptoms, got tested over a 3 month period by the doctor, but the blood tests always came back negative.

About 12 years ago, I suddenly felt pretty bad and had a lot of hypothyroid symptoms, so asked my doctor for a thyroid test - the result was TSH 5.8, but the doctor declared that I did not have hypothyroidism and I received no treatment for it. I got tested 3 years ago and TSH was around 4.5; the doctor (a different one) didn't think treatment was warranted even though several official reference ranges had been brought downwards.

For all of my 20s and 30s, I frequently had cervical dysplasia on my cervical smear test results and always had to get re-tested once or twice more, to get an all-clear result.

In my late 30s, I got shingles, doctor gave me acyclovir.

About 4 years ago, I started to have cheilitis (constant lip chapping) non-stop - did everything to try to fix it, eliminate allergens, stop using makeup, etc., and many steps have helped, but nothing has cured it. I do not mean angular cheilitis where the irritation is only at the sides of the mouth - the constant chapping I experience is across the middle 80% of my bottom lip, while the sides of my mouth are fine.

A few years ago I started to have tinnitus, especially whenever I'd take ibuprofen. I stopped taking painkillers as much as I could.

About 2 years ago, my thumbnails suddenly started being quite deformed as they grew out from the nailbed - I've researched it and there are 2 different names for it, which I momentarily forget. It's likely due to a vitamin deficiency or systemic illness. My big toenails are getting wavy, but not as massively deformed as the thumbnails. I went to the doctor to show her my nails, and asked for some tests. She said the test results were all normal and dismissed me. A month later, I asked the office for a copy of those test results and noticed that my serum ferritin was only 14 so I went back to the doctor and suggested that since my iron was really low that I should be taking supplements - she agreed. I have taken iron supplements for 2 years but it has only slowly increased - at 3 months it was 25, at 6 months it was 50, at 9 months it was back down to 25, etc. Doctor said it must be that my periods were causing me to lose iron, didn't seem concerned at the backsliding of my numbers. My thumbnails have not gotten any better - they are worse.

For many years, from my mid-20s until the iron deficient test result, I was "mainly" a vegetarian - I would eat a serving of chicken or turkey about six times a year, and regularly ate cheese and eggs. I did take 1000 mcg of cobalamin B12 (swallowing the pill) per day, throughout those years. When I got the low ferritin test result, I decided I should eat more meat, including red meat, even though I didn't really wish to. Therefore, in the last 2 years, I have eaten about 3 ounces of meat a day, 5 days a week, which isn't a lot, but it's what I can handle.

Also 2 years ago, I began to get tendon problems - developed tennis elbow and plantar fasciitis (in the heel) within 3 months of each other AND this is without playing any sports or doing repititous actions. I asked the doctor and physiotherapist if the two things were linked, and was told that they were not. I told them it felt like my body was suddenly aging quickly. It took 6 months for the tennis elbow to resolve and 9 months (of sleeping in a boot) for the plantar fasciitis to resolve.

In the last 4 weeks, my hair has begun to fall out from my scalp, much more than normal healthy hair shedding. This is new.

I am careful about supplementing and for the past 18 years I have taken a wide array of basic vitamins, minerals, oils, and herbs that are recommended by mainstream doctors who champion supplementation such as Weil, Sahelian, Oz and others.

Not only do I have constipation, which has been a "normal" condition for me my whole life, even when I was a baby (typically, I will have a bowel movement maybe once every 3 or 4 days, with occasional interludes of going once every 1 or 2 days), but in the last few months, about once every 2 weeks (so, not every time I "go", maybe every 3rd time), the little poopballs will FLOAT. I looked it up, and floating pieces of poo seem related to poor digestion, poor absorption, lack of bile?

Some months ago, I suddenly developed weird vision problems and had a spate of bad migraines (which may or may not have been connected to the vision loss). Up to then, my vision had always been quite good and I've never needed glasses, even though I'm in my mid-40s, which the eye doctor said was unusual.
When my impaired vision did not get better, I went to an opthalmologist who ran a lot of tests on me and said he was concerned because I had optic nerve damage in both eyes and either had sudden-onset, early-onset normal tension glaucoma (which is not good because it can lead to blindness by the 60s if the progression is not halted) OR optic neuritis (which is an indicator of later developing multiple sclerosis--for a scary 75% of women in my age group who have optic neuritis).
He said he wasn't sure which condition I have, so he wanted to refer me to a neurologist who would refer me to have an MRI (which I was prepared to hear, and happy to arrange, even though I don't have insurance, because I had researched my vision problems online and had realized that I was probably suffering from optic neuritis), BUT first, the eye doctor said he wanted to try glaucoma drops for a few months to see if that would lower my pressure (even though my pressure was already in the normal range). I wasn't happy about the drops he prescribed (which greatly increased my ear tinnitus, cost $126 a month, and they also turn many blue-eyed users' eyes permanently brown which I just felt hesitant about) so I stopped taking them. (I have not yet had an MRI.)
I was not happy with the opthalmologist - he didn't listen to me, didn't do any blood tests on me, said that my iron deficiency and many years of vegetarianism could play no part in my vision problems (?), was really patronizing, and was charging me a fortune (far more than his office quoted me before I made the first appointment), so I decided to research my vision symptoms on my own.
One of the things that opthalmologist had said in passing to me was that he was torn between the two diagnoses because my eye situation was really unusual, and the only patients of his who had similar situations were two or three long-term drug/alcohol addicts who were in and out of jails and hospitals. He stared right at me and said, "You don't use drugs or a lot of alcohol?" and I said, "Absolutely not!"
Of course, after I began to research optic neuritis and normal tension glaucoma, I realized that a form of optic neuritis occurs when people have nutritional deficiences in their diet, especially B12 deficiency, or when they are exposed to toxins -- including drugs and alcohol, as well as cigarette smoke, ethanol, other toxic substances -- and often this subset of optic neuropathies are treated very dismissively in the literature and textbooks, like it's only down-and-out addicts or malnourished, starving people who have this problem.
[By the way, in Freddd's long list of B12 deficiency symptoms which appears elsewhere on this site, I would like to ask him to add optic neuritis, and I can give him references to back that up.]
My vision has not recovered, which it does in nearly all cases of optic neuritis after a few months --especially the form of optic neuritis which is a precursor to multiple sclerosis-- so maybe it really is fast-onset, early-onset, normal tension glaucoma that I have.
Although I do not know much about biology or anatomy etc., I am convinced, after reading hundreds of Pubmed studies on these issues, that normal tension glaucoma and optic neuritis / optic neuropathy are not two entirely distinct things, and normal tension glaucoma is probably not so similar to high-pressure "traditional" glaucoma as its categorization suggests.
By the way, the MTHFR gene mutations are statistically-significantly correlated to normal tension glaucoma in some populations.

I figured that somehow my low iron and many years of vegetarianism (lack of "real" B12 from meat) probably were contributing to my weird symptoms such as the suddenly-damaged optic nerves, lip cheilitis, nail deformities, fatigue, total lack of motivation or drive, and so on.
Looking into it, I found Freddd's writings about B12 deficiency on several other sites, and that led me to discover Phoenix Rising.
I read further, and discovered the MTHFR gene mutations, and I had a sense that maybe I had them, so I sent away for a 23andme test. My results show that I'm compound heterozygous for MTHFR.

My other 23 and me results:
reds
ACAT1-02 AA +/+
BHMT 02 TT +/+
BHMT 04 CC +/+
BHMT 08 TT +/+
MAO A TT +/+
VDR Taq AA -/- (Yasko calls it +/+)
yellows
AHCY rs13043752 AG +/-
CBS A360A (C1080T) AG +/-
COMT H62H CT +/-
COMT V158M AG +/-
MTHFR A1298C (E429A) GT +/-
MTHFR C677T (A222V) AG +/-
MTRR A66G (A919G) AG +/-
MTRR A664A AG +/-

I am okay on understanding the genetics part of it (double helix, homo- and heterozygosity, alleles and stuff), but I don't really know what all that means in practice inside my body, because I do not know much about biology. I have found videos, diagrams, etc. about the methylation system, but it still is like a foreign language to me.

I am currently unemployed and do not have health insurance, so I need to treat myself as much as I can, with supplements, nutrition, and any behavioral actions that might help.

I decided to do some blood/urine tests after I got my 23andme results back. Unfortunately I can't do the $900+ tests. I scoured this and other forums for advice given to other people, and compiled a list of the most important tests in my situation that would give the most bang for the buck.

I stopped taking all supplements for the 8 weeks prior to having these tests.

These are the ones I got:
Celiac disease autoantibodies including Tissue Transglutaminase (tTG), IgA
Complete blood count with differential - CBC
Comprehensive metabolic profile/panel - CMP
DHEA-S (sulphate)
Antinuclear antibody - ANA
C-Reactive Protein - CRP
Erythrocyte sedimentation rate - ESR
Ferritin
Iron - % saturation
Serum Iron
TIBC/UIBC
Lipid panel (total cholesterol, LDL, HDL and triglyceride)
Free T4
Reverse T3
T3 uptake
Thyroid Antibodies: TPO Thyroid peroxidase antibody, Thyroglobulin antibody
Total T3
TSH
Urinalysis
B12 serum
D3 (25-hydroxy)
Folate serum
Homocysteine
Methylmalonic acid - MMA


I have the results back, and they are surprising to me. I am not sure what they mean.

Below, I will only list the ones that were out of range, or especially important to me to check on.

------
Iron:

Serum Ferritin: 53 (reference range: 15-150). This is higher than it's been in the past couple of years, so I am glad about it. I know that most people say you should aim for 75 at least.

Serum Iron: 159 HIGH (reference range: 35-155)
Should I worry about this? What does it mean?

------
Thyroid:

TSH: 3.2 (reference range 0.450-4.500).
As I wrote above, 12 years ago it was 5.8, 3 years ago it was 4.5, and now it is 3.2, without any thyroid treatment. I feel pleased about that improvement, but I know that some people would say that it is still too high and indicates hypothyroidism, especially when other symptoms are present.

Reverse T3: 26.3 HIGH (reference range 9.2-24.1)
What does this indicate? Does it indicate I really do have hypothyroidism, kind of through a back door? Or does it show adrenal problems?

T3/RT3 ratio: 3.5
(apparently it should be higher than 10?)

------
LDL Cholesterol: 111 HIGH (reference range 0-99)

------
Vitamin D 25-Hydroxy: 20.4 LOW (reference range 30-100)
Deficient by Endocrine Society practice guidelines

------
Serum Vitamin B12: 931 (reference range 211-946)
Is this quite high, even though in range?

The other tests for B12 deficiency, like homocysteine and methymalonic acid, came back normal. I was really surprised. Does this mean that a B12 deficiency would not have been the cause of my optic neuropathy?

------
DHEA-sulfate: 24.8 LOW (reference range 35.4-256)
Does this mean I have adrenal trouble?

------
Cancer Antigen CA-125: 314.9 HIGH (reference range 0.0-34)
WHAT?? I did not order this test specifically, but it came as part of a test panel that I ordered for other reasons. I really wasn't thinking along the lines of testing for cancer, at this point in time.
I have now researched this test tonight, and I see that it has a high rate of false positives and false negatives, especially for women who are still menstruating. It also might indicate something other than ovarian cancer - it might show other forms of cancer, or hepatitis, pancreatitis, endometriosis, benign tumors, etc.
One trustworthy reference site said something about how if the CA-125 score is over 200, then it's really high, and should be checked out immediately by a gynecologist.
Does anyone know if a score over 200 definitely indicates an urgent situation for a still-menstruating woman who does not feel that she can detect an abdominal mass?
Would a result this high indicate that something has definitely gone wrong?
Are there any other tests I should get myself?

------
Should I get some other blood/urine tests as a matter of urgency?
And for what --- cortisol? If so, which cortisol test is best?

I was really excited to start taking new supplements for methylation purposes (like methylfolate), now that I know that I am compound heterozygous for MTHFR -- and I still hope that I can heal parts of my damaged optic nerves and recover some of my vision once I can get some "real" B12 into my system, but I don't know now if I should still refrain from all supplements so I can get other blood tests done in the next couple of days.

------
I don't have a doctor, don't know of any "good" ones in my area. What sort of doctor would be best to go to first? A GP, or direct to a gynecologist, or?
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)? If that would be a good step, what type of doctor is this - osteopath, naturopath, I really don't know what they are called.

-----
Any thoughts or advice would be greatly appreciated.
 

Mij

Messages
2,353
What were your Celiac disease autoantibodies and Tissue Transglutaminase (tTG), IgA results?
 

MMe

Messages
24
Hi Bluebell, I'm also a newbie in all this stuff. (And English is not my native language, even not my second language.)
My doc says not to worry too much about a LDL slightly above the maximum range. More important is the ratio between LDL and HDL. Do you have any input about your HDL?
 

Hip

Senior Member
Messages
17,824
Hi Bluebell. Have a look at the list of symptoms listed on my website here, which were all caused by a virus I caught. Glaucoma is included in my list. Does that list sound like you?
 

justy

Donate Advocate Demonstrate
Messages
5,524
Location
U.K
Hi Bluebell, firstly i would just like to say how VERY similar your history sounds to mine in many ways (although not identical)

It sounds to me like you might have HYPOthyroidsim - you seem to be displaying all the symptoms, as well as problems with iron and vit D which are common in Hypo. Your symptoms don't seem to suggest M.E/CFS.

I have an M.E diagnosis but am just starting treatment with Armour thyroid for HYPo with a doctor who believes i may have a problems with my thyroid, so i've been doing a lot of reading up on it recently. I suggest you find a good doctor who can treat you for this - i am in the UK so can't recommend anyone. This is a great website

http://www.stopthethyroidmadness.com/

I believe they also have a forum where you could ask for advice. I have been getting support from a great forum in the UK
http://thyroiduk.healthunlocked.com/

Sorry i cant help with the other questions, but i would consider following up on the cancer screening blood test if you can.
Good luck

Justy x
 

Bluebell

Senior Member
Messages
392
What were your Celiac disease autoantibodies and Tissue Transglutaminase (tTG), IgA results?

Hi Mij,

Deamidated Gliadin Abs, IgA: 5 units (reference range: 0-19 = Negative)

Deamidated Gliadin Abs, IgG: 7 units (reference range: 0-19 = Negative)

t-Transglutaminase (tTG) IgA: <2 U/mL (reference range: 0-3 = Negative)

t-Transglutaminase (tTG) IgG: <2 U/mL (reference range: 0-5 = Negative)

Endomysial Antibody IgA: Negative

Immunoglogulin A, Qn, Serum: 288 mg/dL (reference range: 91-414)
 

Bluebell

Senior Member
Messages
392
Hi Bluebell, I'm also a newbie in all this stuff. (And English is not my native language, even not my second language.)
My doc says not to worry too much about a LDL slightly above the maximum range. More important is the ratio between LDL and HDL. Do you have any input about your HDL?

Hi MMe,

It was normal - I only put results above that were not in the normal ranges.

These are the lipid results:

Cholesterol, Total: 192 (reference range: 100-199)
Triglycerides: 75 (reference range: 0-149)
HDL Cholesterol: 66 (reference range: >39)
VLDL Cholesterol Cal: 15 (reference range 5-40)
LDL Cholesterol Calc: 111 HIGH (reference range: 0-99)
T. Chol/HDL Ratio: 2.9 (reference range: 0-4.4)

I am glad to hear you say that the ratio is the important thing. My ratio seems good.

To be honest, after I saw the bad ReverseT3, bad DHEA-s, deficiency of Vitamin D, and the really high cancer score, I wasn't even worried about the cholesterol! :oops:
 

Bluebell

Senior Member
Messages
392
It sounds to me like you might have HYPOthyroidsim - you seem to be displaying all the symptoms, as well as problems with iron and vit D which are common in Hypo.

Thank you, Justy.

When I was looking up high reverseT3 last night, I came across a whole page on the issue on the Stop the Thyroid Madness site.

I am wondering if the low DHEA and high ReverseT3 plus the fact that all my other thyroid measurements came back "normal" might indicate an adrenal problem.

I expect that I really must see a doctor about this, those areas are not something that can be self-treated by a layperson....

I've mentioned to several doctors in the last 12 years that I was concerned that I had hypothyroidism, but they fobbed me off. I think it's because I didn't look that unwell, even though I didn't feel well.

I am looking a lot less well these last few years, kind of pale, yellowish, and haunted (everyone, such as store clerks or border control officers, who looks at my driving license or passport, comments about how I looked so much better in the I.D. photograph than I do now - which is so rude, but it happens to me at least once a month) --which I guess is in my favor medically-speaking, ironically. :ill: :p

Do you have any thoughts about why my TSH would go lower over the years, with no drug treatment for it and despite my general health continuing to decline? Is my thyroid getting healthier somehow?
 

Bluebell

Senior Member
Messages
392
Hi Bluebell. Have a look at the list of symptoms listed on my website here, which were all caused by a virus I caught. Glaucoma is included in my list. Does that list sound like you?

Hey Hip,

I have read through your website, which was obviously put together with much passion and care!

In parts, what you have gone through sounds like a nightmarish, Twilight-Zone kind of solitary mental torture. I can relate with many things - social isolation, becoming less articulate, losing all motivation, and so on. It can seem like you've started living in a similar-but-oh-so-different space-time dimension. Certain creative depictions (novels, movies, stories) of altered states of consciousness now seem more "realistic" - such as described in Hesse's novel _Steppenwolf_ or in a Kafka tale.

I currently have several of the symptoms you list, including a chronic white coating on my tongue that never goes away (I've had this nonstop for 12 years - I went to the doctor several times for it - she tested everything she could think of, and eventually said, "Yes, this is indeed 'something' real, but Western medicine cannot help you with it. You should look to Chinese medicine, Ayurveda, something like that - maybe they have a solution."

I also have blurry vision (although unlike with you, my optic nerves show an unusual pattern of recent damage), occasional tinnitus, fatigue, sleepiness, a tummy that rumbles loudly (!), occasional intestinal bloating and gas, crepe-paper tops of hands, low mood, feeling like part of my vocabulary has just disappeared, gain of abdominal fat, cold hands and feet, becoming insular, and so on.

I've got a few moles with that rough texture, but when I asked my doctor about them 10 years ago, she said they were normal for my skin type and that their numbers would increase as I got older.

Some of the other symptoms I've had at various times, but don't have now (sore throat, thick mucus, etc.); but, as you know, frustratingly, these can be symptoms for so many different health problems! They can be due to ordinary viral infections and "natural" aging.

A few little things that might help some of the milder symptoms:

I have found great relief (and actually achieved mostly a "cure" of my severe seasonal allergies to tree and other types of pollen that would last for 6 months of the year, that I had almost all my life, and that became immune to prescription allergy medicine and the doctor said there was nothing else we could try) by doing a quick daily nasal irrigation with salt water. One can use a little plastic neti pot that these days can be found in many drugstores, as well as on Amazon etc.

For mouth/teeth health, total elimination of plaque, healing of pockets, and fortification of enamel, I recommend following dentist Dr. Ellie Phillips' free, simple and inexpensive protocol, at least for 6 months. You can learn everything you need to know about her basic recommendations by reading some of the more-descriptive customer reviews of her book on Amazon. You don't need to buy her book. She also has several websites, but they are in a bit of a tangle and could do with a re-organization.

Thank you for making me aware of your research and website.

I hope that you find more answers, and effective treatments that will help you recover as much as possible.
 

Bluebell

Senior Member
Messages
392
I forgot to add to my original post (I'll go back and add it) -

Not only do I have constipation, which has been a "normal" condition for me my whole life, even when I was a baby (typically, I will have a bowel movement maybe once every 3 or 4 days, with occasional interludes of going once every 1 or 2 days),
but in the last few months, about once every 2 weeks (so, not every time I "go"), the little poopballs will FLOAT.

I looked it up, and floating pieces of poo seem related to poor digestion, poor absorption, lack of bile?

This is one of the reasons that I had the celiac blood test.

Would the occasional floating poop, combined with the very high result on the Cancer antigen 125 test, maybe indicate that my liver or pancreas is having trouble?
 

caledonia

Senior Member
For the cancer antigen, maybe get that tested again to see if you get the same result to rule out a false positive. This is what they did when I had a positive ANA. If it's still showing high, then see the gyno. Really, your doctor should be telling you this, not leaving you to guess.
-=-=-=-=
You have a lot of hypothyroid symptoms. This is from Stop the Thyroid Madness (STTM):

If not on thyroid medication: if your free T3 is mid-range or lower, and in the presence of hypothyroid symptoms, you may have hypothyroidism, no matter how low the TSH.

Use STTM for help in what med to take, how to find a doc, etc.

Once you get that treated, many (but probably not all) of your symptoms should clear up.
=-=-==-

Then you're down to WHY do I have thyroid and all these other problems. The answer probably lies with your methylation SNPs along with whatever environmental exposures added to the mix. So this would be the next thing to treat.
 

rlc

Senior Member
Messages
822
Hi Bluebell, the CA-125 result is very high, it could be a false positive, but it should be seen as positive until more investigations are done, because some of the causes of failing this test are very serious. There is a list of possible causes here http://en.diagnosispro.com/differential_diagnosis-for/ca-125-antigen-titer-lab-increased/11646-154.html there is more information on this test here http://labtestsonline.org/understanding/analytes/ca125/tab/test

My opinion is that it is important that you get a doctor to investigate what this test result could mean as soon as possible.

Your high normal b12 plus normal Homocysteine and methylmalonic acid means you do not have a problem with B12. There are according to this site 112 causes of Optic neuritis http://en.diagnosispro.com/differential_diagnosis-for/infectious-disorders-specific-agent-optic-neuritis-causes/12072-154-170.html some more information here http://en.wikipedia.org/wiki/Optic_neuritis

Your tests show that you are Vitamin D deficient this should be treated as it can cause many symptoms like fatigue, muscle pains etc, etc.

TSH reference ranges are said by researchers to be wrong, and your level of 3.2 would be considered above reference range by many sources, see http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm Dr MIrza says in this article http://www.bmj.com/rapid-response/2011/11/01/myth-chronic-fatgue-syndrome

“True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism. If you go by your laboratory's reference range of 0.5-5, of course you will miss the boat, and resort to the waste basket diagnosis of CFS.”

He has written another article here that explains more about this and how to treat it http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

There are however many conditions that cause high TSH they are listed here http://en.diagnosispro.com/differential_diagnosis-for/tsh-thyroid-stimulating-hormone-lab-increased/10547-154.html

It does include Addisons DHEAs is also low in adrenal problems see http://en.wikipedia.org/wiki/Adrenal_insufficiency so my opinion is that Cortisol should be tested.

This site has pictures of nail diseases and what may be the cause, which might be helpful to you, http://www.dermnetnz.org/hair-nails-sweat/nails.html

You have multiple failed test results which need to be investigated by a good dedicated doctor to find the cause/causes of your problems. Sorry I can’t be more specific as to what they might be. It looks to me that you need a lot more investigations done before a correct diagnosis can be achieved.

Hope this helps

All the best

 

Bluebell

Senior Member
Messages
392
Hi Caledonia,

Really, your doctor should be telling you this, not leaving you to guess.

No one is to blame - the only doctor I have at the moment is myself! I don't have a job, a doctor, health insurance, a partner or kids, or many resources, so I do what I can on my own. :cool:


STTM quote: If not on thyroid medication: if your free T3 is mid-range or lower, and in the presence of hypothyroid symptoms, you may have hypothyroidism, no matter how low the TSH.

The only test the comprehensive thyroid panel that I ordered did *not* include was Free T3 (and I didn't see the point of paying $50 extra just to add that one on, since the others seemed so much more important, and I did pay extra for the thyroid antibodies add-on test). Therefore, I don't know my Free T3 score, but my total T3 score was 91 (reference range 71-180)... they aren't the same, though I don't know if they generally track each other, or not.

Here are all my Thyroid panel scores:
TSH: 3.2 (reference range 0.450-4.5)
Thyroxine (T4): 8.7 (reference range 4.5-12)
T3 Uptake: 29% (reference range 24-39)
Free Thyroxine Index: 2.5 (reference range 1.2-4.9)
Triiodothyronine (T3): 91 (reference range 71-180)
Thyroxine (T4), Free, Direct, S: 1.22 (reference range 0.82-1.77)
Reverse T3, Serum: 26.3 HIGH (reference range 9.2-24.1)
Thyroid Antibodies Thyroid Peroxidase (TPO) Ab: 18 (reference range 0-34)
Thyroid Antibodies Antithyroglobulin Ab: <20 (reference range 0-40)


Once you get that treated, many (but probably not all) of your symptoms should clear up. Then you're down to WHY do I have thyroid and all these other problems. The answer probably lies with your methylation SNPs along with whatever environmental exposures added to the mix. So this would be the next thing to treat.

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.
 

Bluebell

Senior Member
Messages
392
Dear rlc,

the CA-125 result is very high, it could be a false positive, but it should be seen as positive until more investigations are done, because some of the causes of failing this test are very serious. My opinion is that it is important that you get a doctor to investigate what this test result could mean as soon as possible.

Yes, that sounds wise.

The only cause of an abnormal result that I know I don't have for sure is pregnancy!
Of the less scary possibilities, I may have endometriosis, which was even speculated on by my doctor at the time when I was 21.

I don't have any doctors at all, don't know of any in my area. What sort of doctor would be best to go to first? A GP, or direct to a gynecologist, or?

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)? If that would be a good step, what type of doctor is this - osteopath, naturopath, I really don't know what they are called.

==
Thank you for all the internet links for the different problems.

==
You have multiple failed test results which need to be investigated by a good dedicated doctor to find the cause/causes of your problems. It looks to me that you need a lot more investigations done before a correct diagnosis can be achieved.
Yes, oh dear. :(
 

Bluebell

Senior Member
Messages
392
What were your sodium and potassium from the CMP and your FT4?

Hi Ema,

from the CMP
glucose: 87 (reference range 65-99)
sodium: 138 (reference range 134-144)
potassium: 4.0 (reference range 3.5-5.2)
calcium: 9.5 (reference range 8.7-10.2)

T4, Free, Direct: 1.22 (reference range 0.82-1.77)

:)
 

Ema

Senior Member
Messages
4,729
Location
Midwest USA
Hi Ema,

from the CMP
glucose: 87 (reference range 65-99)
sodium: 138 (reference range 134-144)
potassium: 4.0 (reference range 3.5-5.2)
calcium: 9.5 (reference range 8.7-10.2)

T4, Free, Direct: 1.22 (reference range 0.82-1.77)

:)
And alkaline phospatase from the CMP too please...:)
 

rlc

Senior Member
Messages
822
Hi Bluebell, RE

I don't have any doctors at all, don't know of any in my area. What sort of doctor would be best to go to first? A GP, or direct to a gynecologist, or?

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)? If that would be a good step, what type of doctor is this - osteopath, naturopath, I really don't know what they are called.

You almost always need a GP to refer you to a specialist, so you need to find a GP. I don’t want to alarm you but some of the conditions listed on the diagnosis pro site that can cause high CA-125 are cancers. So you need to get this investigated as soon as possible. A GP will be able to assess what is the right speacialist for you.

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.

So my opinion is that you should get a GP as soon as possible and get them to investigate your test results.

Hope this helps

All the best
 

Bluebell

Senior Member
Messages
392
Dr MIrza.... has written another article here that explains more about this and how to treat it http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid

rlc, in that second article, he writes:

"The authors do not mention what to do with a vast segment of the population with significant symptoms of hypothyroidism, who have their TSH between 2.5-5 mU/l, with positive thyroid perxidase (TPO) antibodies and clinical goiter. Recent studies have shown that the true biological normal range of TSH is 0.4– 2.5 mIU/L. This means that the currently used reference range of TSH between 0.5-5 mU/L is skewed by including samples of the population by subjects with unidentified Hashimoto's thyroiditis, undetected goiter or subjects with a positive family history of Hashimoto's thyroiditis and hypothyroidism. If you remove these subjects from the samples from which the current reference range is derived, the true TSH range will be between 0.4- 2.5 mU/L. 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."

Therefore --
-If the level is between 2.5 and 5, he treats pregnant women, or patients with symptoms+goiter/nodules+elevated TPO antibodies.
-If the patient is between 2.5 and 5 but asymptomatic+no goiter/nodules, he does not treat and watches/waits.
-BUT he doesn't say what he does if the patient is between 2.5 and 5, does have symptoms, but has no goiter/nodules and does not have elevated TPO antibodies (which I do not have, according to this week's blood tests)! :confused:


In the first article you link to, he says:
"I will do the following tests and I almost always find the cause for fatigue: 1. True biological reference range of TSH should be 0.3-2.5. If TSH is > 2.5, especially when Thyroid Peroxidase titer is > 10, the patient might have evolving hypothyroidism."

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, but he doesn't say if he treats this "evolving hypothyroidism" with medicine or just watchful waiting.


I looked his name up on a search engine, and saw the following snippet in a review he wrote about a book on Amazon:
"A systematic approach to human body, with a full knowledge of physiology, metabolism, biological clock, sleep,and nutrition and evaluation of every organ system is the key to diagnosis.
My initial evaluation takes over 75 minutes, initial blood tests include more than 20 tests with more to follow based on initial screening. I challenge all the outdated reference ranges based on new research articles."

Sounds fab! That's what it should be like.