High b12 levels and my story - Not sure where to post this, sorry!

[Cazzzzzy]

Thank you all xxx ... I have wanted to reply sooner to thank you but still feeling bad and I have found concentrating difficult ...
Maryb - Like you say I am not going to take the beta blockers as I dont think it is fair on my already confused, not working properly body to detox .... He prescribed the beta blockers when I went to see him with the usual feeling exhausted, not able to walk properly, and all the above symptoms ..... He felt my wrist pulse (for about 3 seconds!!!!!!!) and started writing out the prescription! ....... I cant actually believe that as my pulse is usually slow (around 64 beats per min! - even after trying to walk and experiencing all the symptoms I have!!!)
My celiac test came back normal - this is after my doc told me I didn't need to eat gluten before the test though so I am eating gluten again and will have the test again ............ I have also bought the test results from York so will get those any day now.....

Rich - Thank you for all the b12 info! I would love to try that test but I am actually in UK so not sure if that's possible?

Mast cell disorder - That looks interesting, thank you & I will read up on that later, for now I will stop as I can feel my body reacting already to just this typing! ( I just cant believe how bad I can feel after doing so little!) Also I find my brain doesn't work and understand things as it used to so will read up on that later when hopefully I feel a bit better!

I also found out my TSH level to be 2.63 ......... Would a thyroid issue have anything to do with this?

Thank you xxxxxx

 

[Cazzzzzy]

I have also been having very very tingly feet and my left hand was tingling for a few hours a couple of days ago for a few hours ..... My feet though have been constantly tingling .... Very strange for me....

 

[richvank]

Hi, Cazzy.

In the UK, the methylation pathways panel can be ordered from the European Laboratory of Nutrients (ELN) in the Netherlands. It is necessary to specify the glutathione panel, also, when ordering from this lab, because they don't include it as part of the methylation panel, as the Health Diagnostics lab in the U.S. does. Here is the website of ELN:

http://www.europeanlaboratory.nl/

It may also be possible to order from Health Diagnostics if the blood samples are shipped properly. The contact information for this lab is below.

Best regards,

Rich

Methylation Pathways Panel​

This panel will indicate whether a person has a partial methylation cycle block and/or glutathione depletion. I recommend that this panel be run before deciding whether to consider treatment for lifting the methylation cycle block. I am not associated with the lab that offers this panel.

The panel requires an order from a physician or a chiropractor. The best way to order the panel is by fax, on a clinician’s letterhead.


Available from:

Health Diagnostics and Research Institute540 Bordentown Avenue, Suite 2300
South Amboy, NJ 08879 USA
Phone: (732) 721-1234
Fax: (732) 525-3288

Email: lab@vitdiag.com

Lab Director: Elizabeth Valentine, M.D.

Dr. Tapan Audhya, Ph.D., is willing to help clinicians with interpretation of the panel by phone, or you can use the interpretive guide below:



March 25, 2012

​

​

Interpretation of Results of the Methylation Pathways Panel​

​

by​

Richard A. Van Konynenburg, Ph.D.​

Independent Researcher​

(richvank@aol.com)​

Disclaimer: The Methylation Pathways Panel is offered by the European Laboratory of Nutrients in the Netherlands and the Health Diagnostics and Research Institute in New Jersey, USA. I am not affiliated with these laboratories, but have been a user of this panel, and have written these suggestions at the request of Tapan Audhya, Ph.D., Director of Research for the Health Diagnostics lab, for the benefit of physicians who may not be familiar with this panel. My suggestions for the interpretation of results of the panel are based on my study of the biochemistry involved, on my own experience with interpreting panel results as part of the analysis of a fairly large number of cases of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) over the past four years, and on discussion of some of the issues with Dr. Audhya. I am a researcher, not a licensed physician. Treatment decisions based on the results of applying this panel and its interpretation to individual cases are the responsibility of the treating physician.

Application: In addition to being useful in analyzing cases of ME/CFS, this panel can also be usefully applied to cases of autism and other disorders that involve abnormalities in glutathione, methylation and the folate metabolism.

The panel includes measurement of two forms of glutathione (reduced and oxidized), S-adenosylmethionine (SAMe), S-adenosylhomocysteine (SAH), adenosine, and seven folate derivatives.

According to Dr. Audhya (personal communication), the reference ranges shown on the lab reports for each of these metabolites were derived from measurements on at least 120 healthy male and female volunteer medical students from ages 20 to 40, non-smoking, and with no known chronic diseases. The reference ranges extend to plus and minus two standard deviations from the mean of these measurements.

Glutathione (reduced): This is a measurement of the concentration of the
chemically reduced (active) form of glutathione (abbreviated GSH) in the blood
plasma. The reference range is 3.8 to 5.5 micromoles per liter.

Glutathione plays many important roles in the biochemistry of the body, including serving as the basis of the antioxidant enzyme system, participating in the detoxication system, and supporting the cell-mediated immune response, all of which exhibit deficits in CFS. The level of GSH in the plasma is likely to be more reflective of tissue intracellular glutathione status than the more commonly and more easily measured red blood cell or (essentially equivalent) whole blood glutathione level, which is about three orders of magnitude greater, because red blood cells are normally net producers of glutathione. Also, knowledge of the level of the reduced form, as distinguished from total (reduced plus oxidized) glutathione, which is more commonly measured, is more diagnostic of the status of glutathione function.

In order to be able to approximate the in vivo level of reduced glutathione when blood samples must be shipped to a lab, it is necessary to include special enzyme inhibitors in the sample vials, and these are included in the test kit supplied by these two laboratories.

Most people with chronic fatigue syndrome (PWCs), but not all, are found to have values of GSH that are below the reference range*. This means that they are suffering from glutathione depletion. As they undergo treatment to lift the partial methylation cycle block, this value usually rises into the normal range over a period of a few months. I believe that this is very important, because
glutathione normally participates in the intracellular metabolism of vitamin B12, and if it is low, a functional deficiency of vitamin B12 results, and insufficient methylcobalamin is produced to support methionine synthase in the methylation cycle. In my view, this is the mechanism that causes the onset of ME/CFS. This functional deficiency is not detected in a conventional serum B12 test, but will produce elevated methylmalonate in a urine organic acids test. In my opinion, many of the abnormalities and symptoms in ME/CFS can be traced directly to glutathione depletion.

Anecdotal evidence suggests that PWCs who do not have glutathione depletion do have abnormalities in the function of one or more of the enzymes that make use of glutathione, i.e. the glutathione peroxidases and/or glutathione transferases. This may be due to genetic polymorphisms or DNA adducts on the genes that code for these enzymes, or in the case of some of the glutathione peroxidases, to a low selenium status.

Glutathione (oxidized): This is a measurement of the concentration
of the oxidized form of glutathione (abbreviated GSSG) in the blood
plasma. The reference range is 0.16 to 0.50 micromoles per liter.

Normally, oxidized glutathione in the cells is recycled back to reduced glutathione by glutathione reductase, an enzyme that requires vitamin B2 and NADPH. If this reaction is overwhelmed by oxidative stress, the cells export excess GSSG to the plasma. In some (but not all) PWCs, GSSG is elevated above the normal
range, and this represents oxidative stress. It is more common in CFS to see this level in the high-normal range. This value may increase slightly under initial treatment of a partial methylation cycle block.*

Ratio of Glutatione (reduced) to Glutathione (oxidized): This is not shown explicitly on the panel results, but can be calculated from them. It is a measure of the redox potential in the plasma, and reflects the state of the antioxidant system in the cells. The normal mean value is 14. PWCs often have a value slightly more than half this amount, indicating a state of glutathione depletion and oxidative stress. This ratio has been found to increase during treatment of a partial methylation cycle block, but other types of treatment may be necessary to bring it to normal.*

S-adenosymethionine (RBC): This is a measure of the concentration of S-adenosylmethionine (SAMe) in the red blood cells. The reference range is 221 to 256 micromoles per deciliter.

SAMe is produced in the methylation cycle and is the main supplier of methyl (CH3) groups for a large number of methylation reactions in the body, including the methylation of DNA and the biosynthesis of creatine, carnitine, phosphatidylcholine, coenzyme Q10, melatonin and epinephrine. This measurement is made in the red blood cells because the level there reflects an average over a longer time and is less vulnerable to fluctuations than is the plasma level of SAMe.

Most PWCs have values below the reference range, and treatment raises the value.* A low value for SAMe represents a low methylation capacity, and
in CFS, it usually appears to result from an inhibition or partial block of the enzyme methionine synthase in the methylation cycle. Many of the abnormalities in CFS can be tied to lack of sufficient methylation capacity.

S-adenosylhomocysteine (RBC): This is a measure of the
concentration of S-adenosylhomocysteine (SAH) in the red blood cells. The reference range is 38.0 to 49.0 micromoles per deciliter.

SAH is the product of the many methyltransferase reactions that utilize SAMe as a source of methyl groups. In CFS, its value ranges from below the reference range to above the reference range. Values appear to converge toward the reference range with treatment.

Sum of SAM and SAH: When the sum of SAM and SAH is below about 268
micromoles per deciliter, it appears to suggest the presence of
upregulating polymorphisms in the cystathionine beta synthase (CBS)
enzyme, though this may not be true in every case. For those considering following the Yasko treatment program, this may be useful information.

Ratio of SAM to SAH: A ratio less than about 4.5 represents low
methylation capacity. Both the concentration of SAM and the ratio of
concentrations of SAM to SAH are important in determining the
methylation capacity, because they affect the rates of the methyltransferase reactions.

Adenosine: This is a measure of the concentration of adenosine in the
blood plasma. The reference range is 16.8 to 21.4 x 10(-8) molar.

Adenosine is a product of the reaction that converts SAH to homocysteine. It is also exported to the plasma when mitochondria develop a low energy charge, so that ATP drops down to ADP, AMP, and eventually, adenosine. Adenosine in the plasma is normally broken down to inosine by the enzyme adenosine deaminase.

In some PWCs adenosine is found to be high, in some it is low, and in some it is in the reference range. I don't yet understand what controls the adenosine level in these patients, and I suspect that there is more than one factor involved. In most PWCs who started with abnormal values, the adenosine level appears to be moving into the reference range with methylation cycle treatment, but more data are needed.

5-CH3-THF: This is a measure of the concentration of 5L-methyl
tetrahydrofolate in the blood plasma. The reference range is 8.4 to 72.6 nanomoles per liter.

This form of folate is present in natural foods, and is normally the most abundant form of folate in the blood plasma. It is the form that serves as a reactant for the enzyme methionine synthase, and is thus the important form for the methylation cycle. It is also the only form of folate that normally can enter the brain. Its only known reactions are the methionine synthase reaction and reaction with the oxidant peroxynitrite.

When there is a partial block in methionine synthase, the other forms of folate continue to be converted to 5L-CH3-THF by the so-called “methyl trap” mechanism. Some of the 5L-CH3-THF is broken down by reaction with peroxynitrite, which results from the condition of oxidative stress that is usually concomitant with glutathione depletion.

Many PWCs have a low value of 5L-CH3-THF, consistent with a partial block in the methylation cycle. Most methylation treatment protocols include supplementation with 5L-CH3-THF, which is sold over-the-counter as Metafolin, FolaPro, or MethylMate B (trademarks), as well as the newer Quatrefolic (trademark) and in the prescription “medical foods” supplied by PamLab, including Deplin, CerefolinNAC and Metanx. There are some others on the market that include both racemic forms (5L and 5R) of this folate.

When methylation treatment is used, the level of 5-CH3-THF rises in nearly every PWC. If the concentration of 5-CH3-THF is within the reference range, but either SAM or the ratio of SAM to SAH is below the reference values, it suggests that there is a partial methylation cycle block and that it is caused by inavailability of sufficient bioactive B12, rather than inavailability of sufficient folate. A urine organic acids panel will show elevated methylmalonate if there is a functional deficiency of B12. I have seen this combination frequently, and I think it demonstrates that the functional deficiency of B12 is the immediate root cause of most cases of partial methylation cycle block. Usually glutathione is low in these cases, which is consistent with such a functional deficiency. As the activity of the methylation cycle becomes more normal, the demand for 5-CH3-THF will likely increase, so including it in the treatment protocol, even if not initially low, will likely be beneficial.

10-Formyl-THF: This is a measure of the concentration of 10-formyl
tetrahydrofolate in the blood plasma. The reference range is 1.5 to 8.2 nanomoles per liter.

This form of folate is involved in reactions to form purines, which form part of RNA and DNA as well as ATP. It is usually on the low side in PWCs, likely as a result of the methyl trap mechanism mentioned above. This deficiency is likely the reason for some elevation of mean corpuscular volume (MCV) and mean corpuscular hemoglobin (MCH) often seen in PWCs. This deficit may also impact replacement of cells lining the gut, as well as white blood cells.

Rarely, 10-formyl-THF is found to be much higher than the normal reference range. If this is found, the patient should be examined for cancer, since cancer cells upregulate this form of folate in order to make purines more rapidly to support their rapid cell division.

5-Formyl-THF: This is a measure of the concentration of 5-formyl
tetrahydrofolate (also called folinic acid) in the blood plasma. The reference range is 1.2 to 11.7 nanomoles per liter.

This form is not used directly as a substrate in one-carbon transfer reactions, but it can be converted into other forms of folate, and may serve as a buffer form of folate. Most but not all PWCs have a value on the low side. It is one of the
supplements in some methylation protocols. It can be converted to 5L-CH3-THF in the body by a series of three reactions, one of which requires NADPH, and it may also help to supply other forms of folate to the cells until the methionine synthase reaction comes up to more normal activity.

THF: This is a measure of the concentration of tetrahydrofolate in
the blood plasma. The reference range is 0.6 to 6.8 nanomoles per liter.

This is the fundamental chemically reduced form of folate from which several other reduced folate forms are synthesized, and thus serves as the “hub” of the folate metabolism. THF is also a product of the methionine synthase reaction, and participates in the reaction that converts formiminoglutamate (figlu) into glutamate in the metabolism of histidine. If figlu is found to be elevated in a urine organic acids panel, it usually indicates that THF is low. In PWCs it is lower than the mean normal value of 3.7 nanomoles per liter in most but not all PWCs.

Folic acid: This is a measure of the concentration of folic acid in
the blood plasma. The reference range is 8.9 to 24.6 nanomoles per liter.

Folic acid is a synthetic form of folate, not found in nature. It is added to food grains in the U.S. and some other countries in order to lower the incidence of neural tube birth defects, including spina bifida. It is the oxidized form of folate, and therefore has a long shelf life and is the most common commercial folate supplement. It is normally converted into THF by two sequential reactions catalyzed by dihydrofolate reductase (DHFR), using NADPH as the reductant. However, some people are not able to carry out this reaction well for genetic reasons, and PWCs may be depleted in NADPH, so folic acid is not the best supplemental form of folate for these people.

Low values suggest folic acid deficiency in the current diet. High values, especially in the presence of low values for THF, may be associated with inability to convert folic acid into reduced folate readily, such as because of a genetic polymorphism in the DHFR enzyme. They may also be due to high supplementation of folic acid.

Folinic acid (WB): This is a measure of the concentration of folinic acid in the whole blood. The reference range is 9.0 to 35.5 nanomoles per liter.

See comments on 5-formyl-THF above. Whole blood folinic acid usually tracks with the plasma 5-formyl-THF concentration. They are the same substance.

Folic acid (RBC): This is a measure of the concentration of folic acid in the red blood cells. The reference range is 400 to 1500 nanomoles per liter.

The red blood cells import folic acid when they are initially being formed, but during most of their lifetime, they do not normally import, export, or use it. They simply serve as reservoirs for it, giving it up when they are broken down.

Many PWCs have low values of this parameter. This can be caused by a low folic acid status in the diet over the previous few months, since the population of RBCs at any time has ages ranging from zero to about four months. However, in CFS it can also be caused by oxidative damage to the cell membranes, which allows folic acid to leak out of the cells. Dr. Audhya reports that treatment with omega-3 fatty acids has been found to raise this value over time in one cohort.

If anyone finds errors in the above suggestions, I would appreciate being notified at richvank@aol.com.

* Nathan, N., and Van Konynenburg, R.A., Treatment Study of Methylation Cycle Support in Patients with Chronic Fatigue Syndrome and Fibromyalgia, poster paper, 9th International IACFS/ME Conference, Reno, Nevada, March 12-15, 2009. (http://www.mecfs-vic.org.au/sites/w...Article-2009VanKonynenburg-TrtMethylStudy.pdf)

​

 

[nanonug]

I also found out my TSH level to be 2.63 ......... Would a thyroid issue have anything to do with this?

With TSH at 2.63, I am tempted to say "no"...

 

[alwayshopeful]

TSH test means nothing. You need free T4, free T3, and reverse T3 to see what your thyroid is really doing. Unfortunately, you can't usually get these tests from a "regular" doctor, you will need a naturopath or holistic doc (who will do more for you anyway). A lot of your symptoms could be related to thyroid, so if possible, try to get those checked

 

[Cazzzzzy]

Hello again

Ok so since I last posted I had my food intolerance test results and according to the results I have intolerances to eggs (both white and yolk), milk and yeast (This means candida as far as I can work out!).
I have tried to avoid all these and have just started taking acidophilus supplements....
I am still feeling as I described but a tiny bit stronger, I am going to try a walk today so will let you know how I feel... I have been able to do a bit more around the house, the tiredness and weakness hasn't hit me so hard over the last week but still getting very stiff and slow....

I went to see the doc again and saw a different doc from the last time & she was brilliant! Couldnt believe it but she actually took me seriously and commented on the high b12 and folate.
We looked at my previous TSH levels and they have risen from 0.9 to 2.63 over the last few years so I have had blood tests to check all T3, T4, TSH and antibodys (?)
After talking about the thyroid I forgot to ask for more tests into the high b12 and folate but will definitely ask for more tests on why this is!!!
She also said that if thyroid came back as ok then I would be able to be referred to a specialist! (Wow I was so happy docs are finally listening I almost cried!) - I'm very worried about what might happen but at least it looks like I will find answers now.....

Rich - Thank you very much for all the test info, I cant afford any at the moment ...... I am hoping I can get some tests through doc now but if that's not possible I'll start saving for the tests you mention!


Does anyone know if it's normal for TSH to rise? The 2.63 was nearly a year ago so will be interesting to get results now... I have read people have TSH of 61 !!! Wow they must feel bad and it makes me think maybe it isnt the thyroid that is causing me to feel so weak. I have had very heavy periods lately and my hair has become very coarse and dry over the last year or so will be interesting to get results to rule this out if it isnt that!

 

[rlc]

Hi, Cazzy, glad to hear you’ve found a good doctor stick with her, it is not normal for TSH to rise like that and it is possible that you have evolving Hypothyroidism. What normally happens is that people get an autoimmune thyroid condition and this causes the thyroid to slowly stop working this can evolve over months or even years. This is what your doc is testing for with the thyroid antibody test.

The TSH reference range has been shown to be completely wrong and new research shows that it should be 0.4-2.5 so you have failed the test according to the new recommended reference range. But your original 0.9 is probably around where your personal best level for TSH should be, everyone is different. This article explains the ongoing arguments in the medical world about TSH reference ranges http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm and this article by Dr Mirza has more information and explains how to treat this kind of TSH level http://www.bmj.com/rapid-response/2011/11/02/unveiling-mysteries-thyroid he recommends this equation to work out what level of medication to give.

In our experience, a levothyroxine dose of 12.5 mcg a day would reduce TSH by 2 digits. This simple math will allow you to have a rough estimate of levothyroxine dose. The goal is to reach a TSH of 1-1.5 mU/L.

If you achieve a TSH of 1-1.5 and your patient is still symptomatic, do not waste your time on thyroid and look for other reasons for the patient's symptoms.

It is important to know this because many doctors give to little or too much medication which often makes the patient worse and then the doctor assumes that the thyroid isn’t the problem and starts looking for other diagnoses.

Hypothyroidism even with only slight rises in TSH can still make people very sick, so if this turns out to be the problem treating it properly may help you a lot.

Hypothyroidism however does not explain high B12 and Folate so get your doctor to investigate that and find the cause.

Hope this helps

All the best

 

[Cazzzzzy]

Thanks rlc! Those links are very helpful and very interesting - will be printing off to take to docs

I have had latest results today .... Not sure if anyone knows much about thyroid blood tests levels...

TSH 3.16 (has raised AGAIN)
T3 = 4.8 (Free T3)
T4 = 18 (Free T4)

And doc says my antibody results show my levels are "all absolutely fine and show that I will never have a thyroid problem"

Not sure where to go from here as doc won't treat....... Or look further into thyroid issues

 

[nanonug]

TSH 3.16 (has raised AGAIN)
T3 = 4.8 (Free T3)
T4 = 18 (Free T4)

Do you have the lab's reference ranges?

 

[Cazzzzzy]

Hi nanonug - No I dont have them but could call docs tomorrow and try and find out...

 

[Cazzzzzy]

Another thing that could mean thyroid is I now have very heavy periods and more painful.... My hair is also so dry and coarse and am losing more than usual....
But my weight hasn't gone up if anything I'm losing slightly.....

 

[rlc]

Hi, Cazzy, reference ranges for T3 and T4 can be found here http://www.globalrph.com/labs_t.htm on this page you will also see under TSH this

American Association of Clinical Endocrinologists guidelines changed their normal range for TSH to 0.3 - 3.04 mIU/L.

Still not down to 2.5 but there heading in the right direction, your recent tests result TSH 3.16 means you have failed the test according to the American Association of Clinical Endocrinologists guidelines.

It looks like you might be falling into the trap of having a doctor relying on out of date information regarding TSH reference ranges, maybe if they will read the information that I have given you earlier on TSH reference ranges they may change their mind about this.

Do you know which antibody tests your doctor ordered there are several different ones see http://labtestsonline.org/understanding/analytes/thyroid-antibodies/tab/test

This statement by your doctor

"all absolutely fine and show that I will never have a thyroid problem"

Is just plain silly there are multiple causes of Hypothyroidism and just because you don’t have antibodies now doesn’t mean you can’t develop them in the future. There are many causes of Hypothyroidism see http://www.umm.edu/patiented/articles/what_causes_hypothyroidism_000038_2.htm

There are also other diseases that cause TSH to rise see http://en.diagnosispro.com/differential_diagnosis-for/tsh-thyroid-stimulating-hormone-lab-increased/10547-154.html

So your doctor has still got a lot of work to do before they can say your rising TSH is not caused by a thyroid problem or one of the many other conditions that can cause TSH to rise, and they still have to work out why your B12 and Folate are high.

Do you eat a low amount of sea food and/or do you have a low salt diet or use none iodinated salt like rock salt or sea salt.

Low iodine is a cause of hypothyroidism so it may be worth getting your iodine tested.

Sorry but your doctor has still got a lot of work to do you have high B12 and Folate and your TSH is rising they need to find the answer/answers to why this is happening, so keep pushing them to get to the bottom of these failed test results and hopefully they will find something treatable.

Hope this helps

All the best

 

[Cazzzzzy]

Hi rlc - thanks again, youve been so helpful xxx

I spoke to the receptionist at the doctors surgery and got the ranges and have been told the doctor has noted on my records now that i will never have thyroid problems (!!!???!!! I am shocked by this!!! Yes maybe I haven't a thyroid problem but my TSH has risen and I have so many symptoms I just cant believe she cant see the logic there and has now written that on my notes!!! ) - I could really vent right now about how I feel about that..... But anyway ranges.....

TSH 3.16 (Range 0.27 - 4.2)
T3 4.8 (Range 2.8 - 7.1)
T4 18 (Range 10 - 24)

All I could find out about the antibody test is that is is called Poroxodace (Spelling!?!?) and results... 3iu/mil ( I am not sure on this - this is all the receptionist could tell me)

So according to these other results I should be feeling fine but I really am not and I will probably ask to be referred to an endo - would that be the right choice?

I also spoke to the doc about high b12 and folate again and she told me to stop worrying and it is because I take supplements.... Hmmmm well logic also tells me maybe I have an issue with absorbtion or a liver issue so what tests could I ask for to check this?

I am interested in what you say about iodine - I never add salt to my food but I do eat a lot of fish as I am vegetarian so fish is my protein.... I might ask the doctor to test for iodine defiecency but she will probably have no idea what I am talking about ........

Thanks again!!!!! xxxxx

 

[nanonug]

TSH 3.16 (Range 0.27 - 4.2)
T3 4.8 (Range 2.8 - 7.1)
T4 18 (Range 10 - 24)

With these values, I would be very surprised if your problems originate in the thyroid. With your symptoms (shortness of breath, stuffed sinuses, always dizzy) you could try an anti-histamine such as cetirizine (Zyrtec in the US) to see what happens.

 

[rlc]

Hi Cazzy, what your doctor has written on your file about you never going to have a thyroid problem is just plain silly, and you should be shocked, no doctor on the planet can predict that someone will never have a thyroid problem!!! If your TSH levels keep going up at the rate they are it will be interesting to see what your doctors says when your TSH levels go above the reference range used by the lab doing your tests.

The "thyroid antibody tests Poroxodace", is most likely Thyroid peroxidase antibody TPOab, you can ask your doctor to give you copies of all your tests, they are yours! This is important because there are two thyroid antibody tests and it looks like your doctor has only done one of them, the other test is Thyroglobulin antibody TgAb this has to be done to prove that you don’t have autoimmune hypothyroidism. It is also used to test for thyroid cancer a possibility that seem to have eluded your doctor!

Iodine was put in salt years ago because a deficiency in it causes Hypothyroidism, if you have not been using iodinated salt, even though you do eat fish, it is possible that you have an iodine deficiency that is causing hypothyroidism, and although your doctor appears to think that they are psychic, the only way to tell for sure is to test your iodine.

Are you taking supplements that are high in B12 and Folate?? If so, if you are able to you could try stopping taking them for a while, this would show whether it is the supplements causing the high levels or if it is some disease process that is causing these results.

My feeling is you need a better doctor one who will take you seriously and not tell you fairy stories about you never going to get a thyroid condition.

If you get all your test results from your Doctor and post them there are a lot of knowledgeable people here who will try and help you and see if something has been overlooked.

Hope this helps

All the best

 

[taniaaust1]

The best thing you could do for yourself right now I think is to find yourself a doctor who specialises in ME/CFS and is recommended by other patients (not all ME/CFS specialists are good ones).

Except for the high B (esp being not a red meat eater) if you wasnt on B supplements at the time.. I too suggest to keep looking into the other causes of high B, but other then that it sounds like you do have ME/CFS or celiac disease (food issues are quite normal in those who have ME/CFS too). Tailoring your diet to you can be an important part of the whole ME/CFS treatment stuff.

Seeing your home celiac test was postivite.. I think you should get checked in that area more..Apparently before testing one should be eatting 2 pieces of bread per day for 2-6 weeks before testing to make sure its as accurate as it can be (they only carry about a 90% accuracy).

I know you said you cut out gluten for a short time but you still had issues... be aware thou that gluten can be in so many different things from supplements to other things and if you do have celiac disease.. a wee amount is enough to cause some issues.

there is also like a gene test thing for celiac disease which can basically completely rule it out if you arent of the types who get it...

 

[Cazzzzzy]

Thank you for all your help all of you xxxxx

Doc is referring me to an endocrinologist .... She was brilliant today again, really listened and can obviously see I'm not well. I'm not sure why she wrote that on my notes but I was on the phone to her - maybe she needs to see me to believe me ....... Anyway she was great today and I'll try and focus on the positive!
Even though it has been years feeling bad at least I am now getting looked in to and I just hope that doctors start really listening and find the cause to treat and not pills to mask what might be illnesses that need treatment!

Anyway I am feeling very scared and now will wait for the appointment to come through so I can start focusing on treating what is making me feel so bad and not focusing on the ill feelings.

Thank you all xxxxx

 

[rlc]

Hi Cazzzzzy, great news that you are being refered to an Endo, hope they sort things out for you quickly.

All the best !!!!!!!!

 

[Cazzzzzy]

Hi again.....

Really not sure where to start on this but basically all my symptoms are now getting worse and have been told up to 30 week wait for endo appointment
I just do not know what to do as everything is such a struggle right now and takes so much effort that I just feel so hopeless....
My legs which are even weaker now and slower, I have trouble walking to my neighbor 50 yards away and that is the furthest I am able to do right now.

I had a few more tests, cortisol blood test (but my doc not seeming to know much about much ... didn't mention that it should be taken in the morning and I should fast (!?!).... The result came back at 315 at 11am (this is after waking at 6 and showering (exhausting) and eating so I'm not sure if I can rely on that result?
Magnesium which came in at 0.84 .... They are the only results I could find out because the receptionist told me that the doctor marked them as all fine and she "didn't have time to read all the results to me"
I just cant go on feeling like this and have lost all my good friends because I am so fed up and me and my children are in battles all the time....

I also found out that my vitamin d result was 50 (range 50-110) but apparantley I am not deficient till it drops to 25.....


What tests can I ask for??? ....

There is so much more I want to say but have forgotten and am worn out


I also asked for more investigation into high b12 and folate levels - doc had to get his book out as he didn't know what that could mean but had no further look into this (and apparently it isn't my liver because my liver function test a year ago was fine).

 

[taniaaust1]

They are the only results I could find out because the receptionist told me that the doctor marked them as all fine and she "didn't have time to read all the results to me"

Next time you go in to your doctors.. ask for a copy of your test results.

Also why you are waiting.. do try to find yourself a ME/CFS specialist as the endo .. is is very likely may not do anything at all to help and then from there you may be having to wait a very long time to get in with a ME/CFS specialist (I had to wait 3 YEARS to get in with my current CFS specialist.. another CFS specialist I tried to get in with had her books completely closed to new patients).. so its best to be seeking out one now as somethings they can be a long wait.

the morning cortisol test often dont show anything. (In my case my cortisol is usually abnormal on 24 hr urine cortisol testing but always normal on my morning one).

. the best type of cortisol test is apparently the saliva one which is taken 4? times during the day (Im not sure how many doctors do it, it may be more so the one naturopaths use).

I also asked for more investigation into high b12 and folate levels

Not many doctors are willing to research what they dont know so you yourself may have to do the researching and come up with whatever best meet your symptoms and take those ideas (info you find) in to your doctors with you. Keep looking for answers over your B12.