Fatigued? Check your vitamin D and B12 levels

16th April 2009

Fatigued? Check your vitamin D and B12 levels

I had my follow-up appointment with Dr. Awesome, my new endocrinologist, this week and wanted to give everyone an update.  At our March appointment, she ordered a slew of tests to rule out every possible condition that might be contributing to my symptoms.  As it turns out, I am ridiculously healthy.  Like, super-healthy.  My doctor is only a few years older than me and thin and she wishes she could have numbers like mine.  Despite having a family history of heart problems and diabetes, type 1 and 2, my blood pressure and sugar levels are phenomenal, my cholesterol is even lower than it was at my lowest weight, and even though I have a history of insulin resistance, she said my healthy, low-glycemic diet is keeping my insulin levels in check.  The only problem she did report is that I apparently have the vitamin D levels of a vampire (vitamin D is derived from the sun).  Since I am severely deficient in it, she wrote me a prescription for 50,000IU a week and warned that the pharmacist might blink when he sees it (recommended dosage for people ages birth to 50 is 200IU a day).  She also wrote a prescription to check my vitamin B12 levels.  Vitamin B12 is mostly found in meat, dairy products and eggs and since I’m a vegetarian who eats the latter two sparingly, she suspects I’m low in that, too.   As for my other symptoms, she’s referring me to a reproductive endocrinologist to confirm PCOS.

Vitamin D and B12 work together in ways my liberal arts brain can not even begin to articulate, but suffice it to say, low levels of either or both increase your risk for several cancers.  Defiencies in either can also cause fatigue, which is one of my complaints.  The most common symptom of a vitamin B12 deficiency is anemia.  Vitamin D deficiencies prevent calcium absorption which can damage your bones, so I would think that anyone with a history of anorexia should especially be tested for it.  People with thyroid diseases and disorders are also commonly deficient in vitamin D and since the thyroid and vitamin D are closely related, thyroid patients should have their levels checked and rechecked.  For more on vitamin D and the thyroid, read here.

Have I mentioned how awesome it is to have a doctor who actually listens to you and sees your weight as a symptom and not a cause of all your health woes?  I only wish I had found her ten years ago.

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This entry was posted on Thursday, April 16th, 2009 at 8:00 am and is filed under Eating Disorders, Health, Nutrition & Fitness, Personal. You can follow any responses to this entry through the RSS 2.0 feed. Both comments and pings are currently closed.

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  1. 1 On April 16th, 2009, Bella said:

    Five years ago I wish I would have had a doctor who look at my weight as a symptom and not the cause of a problem. I weighed 85 pounds and was not getting my period. The doctor quickly assumed I had an eating disorder, but it turns out my thyroid was severely overactive. I am not saying that the doctors shouldn’t have been concerned with an 85 pound adult, but she could have at least ruled out other options before refering me to an eating disorder clinic.

  2. 2 On April 16th, 2009, Sandy said:

    Hi! Glad you are on the road to feeling better! I have to say though that B complex vitamins are essential for a lot of things, like the proper absorption of seretonin, so I always recomend to friends if they are feeling depressed to take Stress Tabs (they are a like a multivitamin of Bs) and vitamin D can help in the absorption of other vitamins as well…why it is so important to have a balanced diet.

    I did write on the other post that I was being tested for thyroid issues. It did turn out that my thyroid isn’t working and now I am on Synthroid and feel 200% better. What I have to say about the supplements is for years I was told that was my issue…that I wasn’t getting enough of this or that vitamin or mineral, but when I would take them I would get deathly sick (I would note that not one doctor had ever checked my levels…it was just assumed I think because I was “so young” and shouldn’t have anything wrong with me).

    I do take supplements now and again, but I cannot take them on a regular basis (ie every day) or I will get deathly sick. I can only take them at short bursts every other day.

    I just wanted to put that out there for those who may have had the same issue as me…it can never hurt to have the blood work done…but don’t just take what the Dr says without them at least doing some tests especially if you have a problem taking supplements like I do.

  3. 3 On April 16th, 2009, Bethface said:

    Three years ago a doctor told me that I might have PCOS. He had me do a battery of tests and in the end found that I did have PCOS. Man was that a burden off my back. All of the sudden the way I felt everyday made since. I still struggle with many of the symptoms but being able to understand why something is happening to my body sure does help. Knowledge really is power. Silly I know but still true.

    I help you feel better soon!!!!

  4. 4 On April 16th, 2009, Christine said:

    Hey Rachel,

    I think it’s worth mentioning that no one really knows how Vitamin D causes a lot of the symptoms you’re mentioning; but it’s crucial in calcium absorption (a severe lack of vit. D causes rickets in little kids!).

    I’m a student right now and the doctors at the university’s health center have been seeing a lot of vitamin D deficiency cases — a lot of these have manifested themselves in complaints of chronic pain (joint pain, in my case), fatigue, and depression.

    The doctors have suggested that it’s because many of us fail to go out in the sun when we’re inundated with schoolwork and classes, which is also something I do – when school gets busy I am definitely one of those “go to class, do homework, eat, sleep, repeat” kind of people. I get my blood labs back pretty soon, but I was happy to see this post since many people may be unaware they have this problem – I definitely didn’t think of it! :)

  5. 5 On April 16th, 2009, Living400lbs said:

    My D and B12 are also low. I’m on supplements for them both.

  6. 6 On April 16th, 2009, Sarahbyrdd said:

    “Have I mentioned how awesome it is to have a doctor who actually listens to you and sees your weight as a symptom and not a cause of all your health woes?”

    Yep! Going through this myself. After years of having “borderline high” BP and being told to diet, various stressors have caused my BP to shoot up and as of this morning I’m getting medication. What a bloody relief. Plus, my doc’s got me lined up for a battery of tests to check out my thyroid and heart for any problems that might be contributing to the situation. My Vitamin D was low too. Supplements ahoy (plus a little more sunshine)!

  7. 7 On April 16th, 2009, ItsTheWooo said:

    I am confused how your blood sugar and insulin can be normal if you are currently symptomatic with PCOS? It is understood PCOS is caused by hyperinsulinemia secondary to disordered blood sugar metabolism. I have PCOS as well (textbook, every single symptom, elevated DHEAs, elevated testosterone, normal estrogen, LH:FS ratio of 2:1). It went way pretty rapidly when I started a very low carb diet. Immediately mood/acne got better. The next month I had a period.

    It’s true PCOS is a disorder that exists even if insulin and glucose is well controlled… I do think my hypothalamic amenorrhea is partly related to my PCOS, in that both conditions involve hyperandrogenic ovaries that are supersensitive to insulin. But, I do not see how a woman can be so symptomatic of PCOS if her insulin and glucose is TRULY well controlled. I would ask to see the lab works. A lot of the times a doctor will say “this is normal” when reality it sure isn’t. My doctor told me my labs were fine and seemed not to understand why I had the symptoms I did… later on, 4 years later as an adult, having done my own research I got the copy I was like “uh, no, not at all, this is clearly PCOS”.

    What doctors consider “appropriate” for insulin, glucose, hba1c, thyroid, and a lot of other labs are actually levels that may produce symptoms for you, the patient.

  8. 8 On April 16th, 2009, spacedcowgirl said:

    Congratulations on your great results!

    It’s interesting what you say about Vitamin D–a few years ago I had elevated levels of alkaline phosphatase, and my doctor wasn’t sure whether it was caused by liver problems or a Vitamin D deficiency, so I went on Vit. D for a while. (I am obsessive about sunscreen and have been since I was a preteen, so the “sun deficiency” concept could apply.) The next year, they were back in the normal range, and I think I–perhaps mistakenly–attributed this to my liver being in better shape as I had been in the process of losing a lot of weight, so I quit the Vitamin D. I am exhausted most of the time (I can sleep for 11 hours a night easily and have a lot of trouble getting out of bed in the morning). So maybe it is time to try the Vitamin D again and see if that helps. I wouldn’t be surprised if I attributed something to weight loss that really didn’t have anything to do with it…

    Because of the tiredness and certain other symptoms, I have also always suspected I have some sort of thyroid thing going on (my mother has been on Synthroid for as long as I can remember), but my TSH levels have been tested several times and they are in that “high but not out of range” area where many people say you should insist on trying treatment anyway. I am not that forceful and I have never been able to bring myself to argue with doctors who say the levels are fine and probably also think I’m just a fat girl looking for an “excuse.” Bleah. I’m overdue for a physical, so I should probably just suck it up and ask for the tests again. Your thyroid series was also very helpful for me on this subject, by the way.

  9. 9 On April 16th, 2009, Rachel said:

    @Bethface: Do you take any medication to treat your PCOS? If so, what and how is it working for you?

    @ItstheWoo: PCOS isn’t a new suspicion for me. My doctor thought I had it about seven years ago when I was at my heaviest weight and my blood sugar levels weren’t so great. Another problem is that many of my symptoms overlap with other conditions. For example, forgetfulness can be symptomatic of a thyroid imbalance, ADD and depression — all of which I have — in addition to PCOS and other disorders. Likewise with symptoms of unexplained weight gain, fatigue, cold intolerance, etc… That’s why my doctor ordered so many tests; she wanted to rule out every possible condition.

    @Spacedcowgirl: Thanks! I’m glad they were helpful to you. What I have found in my experiences is that if your levels are borderline like yours, it might be better to go to your family doctor. I’ve found that my family doctors are generally more prescription-happy than specialists are, perhaps because they’re so inundated with all types of cases and infirmities. Then, after you go on Synthroid or Cytomel or both and you can see some tangible proof of effectiveness, follow-up with a specialist for continued treatment and monitoring.

  10. 10 On April 16th, 2009, Lisa said:

    I was intrigued by Itsthewoo’s comment. It was my understanding that there’s no definitive diagnostic criteria for PCOS – doctors do a lot of tests to rule out any other causes for a particular cluster of symptoms. No other cause – voila, PCOS. I had no idea about the DHEAs and insulin issues.

    My sister has PCOS and I’m starting to wonder if it runs in my family. She has most of the symptoms, but the other three of us girls each have a few.

  11. 11 On April 16th, 2009, Jadxia said:

    Only anecdotal evidence of this, but as far as I have experienced PCOS does seem to have some kind of genetic link. At least, every woman I know who has it seems to also have a sister or other female relative with it.

  12. 12 On April 16th, 2009, Emma B said:

    ItsTheWooo, I had hypothalamic amenorrhea, and I think you’re off-base about HA being related to hyperandrogenic ovaries and PCOS.

    In true HA, the ovaries are actually NOT producing testosterone, and you have LOW levels of it. Testosterone is produced in the thecal cells of ovarian follicles as part of the ovulation process, which is inactive in HA due to inadequate ovarian stimulation of GnRH/FSH/LH by the hypothalamic-pituitary axis. Contrast to PCOS, where the HPA is stimulating the ovaries to grow lots of small follicles (i.e. cysts), which produce excessive testosterone and sometimes estrogen but which don’t usually get recruited to grow and ovulate. My testosterone levels were tested as part of my infertility workup for HA, and were found to be as abnormally low as my estrogen levels were, which is typical — my ovaries were completely shut down, and weren’t producing much of anything.

    It’s certainly possible to have hypothalamic amenorrhea on top of PCOS, but the two diseases work by completely different and somewhat opposite mechanisms. Mine was produced by excessive dieting, exercise, and an 80-lb weight loss (and BTW, I remember you from the Active Low-Carbers boards in 2002-2003), and eventually resolved after I regained some weight.

  13. 13 On April 16th, 2009, Rachel said:

    The university I attend published a good article today on vitamin D. The dermatologic surgeon quoted in the article recommends vitamin D-rich foods like fish and fortified foods like milk, yogurt and certain cereals and breads. Non-fish and/or non-dairy eaters can get this from supplements that cost about $10 for a six-month supply. She added that it only takes about 10-15 minutes twice a week of sun exposure to get required doses of vitamin D.

  14. 14 On April 16th, 2009, La di Da said:

    The Web MD article about B12 deficiency isn’t strictly correct; pernicious anemia may be caused by physical destruction of the gastric lining cells causing inability to produce any or enough intrinsic factor (the substance which binds to B12), but can also be caused by antibodies to the parietal cells or intrinsic factor. I have IF antibodies. “Anemia” is also a bit of a misnomer, since B12 deficiency isn’t really a haemotological problem. And if you have one autoimmune condition, you’re at high risk of obtaining more, so it’s something to watch out for.

    The Pernicious Anaemia Society of the UK (which has worldwide membership) has a LOT of excellent information on B12 deficency generally and in relation to PA. I highly recommend reading through the site, you need to sign up for free to read some of the articles, but you can read the forums without signing up.

    The PAS has produced a report on symptoms, diagnosis and treatment of this type of B12 deficiency and they are finding, through member surveys and reports, that the symptoms and treatments recommended for chronic B12 deficiencies are notably different between textbook, practice, and patient reality. The symptoms list given for PA/B12 def hasn’t changed much since pernicious anemia was first described nearly a century ago, when patients had to be diagnosed on symptoms which were often quite advanced. Megaloblastic anemia (enlarged blood cells) isn’t actually found in most PA patients though it’s listed as a major diagnostic symptom, nor is the “meaty red tongue”. The symptom of “breathlessness” is inaccurately described, it’s more like a feeling of having to sigh deeply to get enough breath and can be misdiagnosed as asthma even though wheezing and congestion is not usually present. The laboratory reference ranges for B12 are also considered too low by PA experts. B12 levels should be kept above 500, not the 140-200 listed by most labs; neurological symptoms may begin at 300 or below. Taking folate supplements can mask B12 deficiency, and the pathology serum tests are also not helpful if you have been taking vitamin supplements, since your serum levels of vitamins can often have little correlation with cell uptake.

    People with this kind of B12 deficiency need more than oral B12 treatment, despite a couple of studies recently claiming that mega doses of oral B12 can alleviate symptoms. B12 injections for life are a must, including a loading dose. Trust me, you don’t want to get neurological symptoms.

    And low B12 and D are associated with hypothyroidism. Having more B12 available in your body will allow your thyroid medication to work more efficiently since B12 is also a part of cell metabolism and other reasons I am yet to study in detail. :) Vitamin D has also been associated with insulin resistace. The D vitamin supplement needs to be D3 in an oil-based suspension (most gelcaps are oil-filled). D2, which is still in some supplements, doesn’t actually work very well in the human body.

  15. 15 On April 16th, 2009, Kelly said:

    La di Da – Are there different types of Vitamin B deficiency? I realize you are talking specifically about B12 but I was curious because I self-diagnosed myself with a B deficiency. My main symptoms were a horrible rash on my stomach that spread up and down, digestive issues and blister like bumps on my hips. My mom and I figured it out as many celiacs (which I am) tend to be low in vitamin B as are vegans and some vegetarians as Rachel pointed out. As soon as I started taking all the B Vitamins in pill form the rash went away but I have to continue taking it or it will come back after a few weeks as I have very few natural sources of vitamin B. I guess I am asking how do you know if it’s PA or just a simple vitamin B deficiency due to a different disease attacking your system? Thanks in advance and thank you Rachel for writing about this :)

  16. 16 On April 16th, 2009, littlem said:

    Does your doc recommend a specific brand?

    In attempting to address those two precise deficiencies, it turns out that some brands, like some animals, are more equal than others — and I don’t put it past some supplement companies to underload the actual vitamin and overload the magnesium stearate binders.

  17. 17 On April 16th, 2009, Piffle said:

    Another thing to remember about vitamin D is that if you live in Northernish areas Winter sunlight isn’t strong enough to make vitamin D in your skin (so my doc told me). So even if you get winter sunshine, you may still need supplements. I take 2,000 units daily and my joints feel better.

  18. 18 On April 16th, 2009, Amy said:

    Hi Rachel,
    I really liked this post. Ironically, I just went out and bought some Vitamin D vitamins a couple days ago. As a runner, I’m looking to keep my joints and bones in decent shape for as long as possible! Other than that, I didn’t know TOO much about Vitamin D. Thanks for the info!

  19. 19 On April 16th, 2009, ItsTheWooo said:

    Lisa – technically there isn’t a definitive diagnosis for PCOS. PCOS is what you call it when all other causes have been ruled out, and a woman has the following features:
    1) anovulation,
    2) amenorrhea or oligomenorrhea,
    3) hyperandorgenism (elevated testosterone and DHEAS),
    4) LH levels which are markedly elevated in relation to FSH,
    5) abnormalities of blood glucose metabolism (high insulin, high A1C or frank diabetes, hypoglycemia reactive type, other signs of hyperinsulinemia like skin tags and AN/hyperpigmentation of skin folds)
    6) And as previously mentioned there is no better explanation (e.g. secondary to cushingoid disease or CAH to explain the abnormalities of gonadotropins and symptoms)

    The majority of these women who are correctly diagnosed (that is, they do not actually have late-onset CAH or some other PCOS-like condition) have PCOS squarely because they have hyperandrogenic ovaries – ovaries that are supersensitive to insulin. The immature theca cells of the ovaries make androgenic precursors; they make these precursors under influence of LH levels and insulin. When women have genetic traits that make their ovaries more sensitive to insulin, the result is the ovaries overproduce these androgenic precursors… this is converted into testosterone, and the synchronicity of the hormone cycle is disturbed. Very high levels of hormones keep LH level elevated, almost in a periovulatory state that never terminates because hormones our out of balance. Ovaries become cystic as a secondary symptom, not a primary one, but cysts do contribute to the hormone imbalance. Ovarian drilling works by destroying the ovary which is hypersecreting hormone precursors, sort of like an adrenalectomy in cushing disease (ectopic sites of adrenal hormone excess – remove the adrenals, cure the disease).

    An easier way to do this without destroying your ovaries and impairing long term fertility is simply by going on an extremely low carb diet or take glucose/insulin suppressive drugs such as metformin or octreotide.

    Rambling. Sorry!

    But yea, there is a big glucose/insulin link with PCOS. I believe women who have “PCOS” but do not have abnormalities of glucose/insulin probably have some kind of condition that has yet to be named or discovered. The majority of PCOS women are very similar – glucose abnormalities, insulin, diabetes/hypoglycemia or strong family history, obesity, etc.

    As for PCOS being genetic… the genes for sensitivity to insulin and general carbohydrate metabolism is inherited. This is not a truly genetic disease, the way CAH is a genetic disease (there is nothing one can do if they have CAH – they will never synthesize cortisol normally if they carry the gene). It is genetic in the sense diabetes or obesity is genetic – susceptibility is genetic, but lifestyle can do a hella lot to attenuate or prevent it. I had PCOS. I no longer do. I am still vulnerable but I am no asymptomatic. My sister has it, she has to take medicine, she will not reduce her carbohydrate to an appropriate level. Don’t eat food that raises insulin? Don’t have PCOS.

    Often times some kind of adrenal gland or liver dysfunction (perhaps drug induced e.g. depakote use) is causing a secondary form of PCOS, as liver and adrenals have a HUMONGOUS influence over basal blood sugar and insulin levels – this may be less easily curable with diet, but even these more tricky forms of PCOS can be reduced by getting off carbs and watching protein.

    Emma B – Having hyperandrogenic ovaries is not the same thing as having high testosterone. And absolute levels of a hormone are less significant than the ratio of androgens to estrogens. By definition, all women with HA are afflicted with hypogonadism. The ovaries are not producing estrogen or testosterone adequately. When I use the term “hyperandrogenic” I am talking about the nature of the ovary when it is being adequately stimulated by gonadotropins (LH and FSH, from your pituitary gland). Ovaries that produce a bit more androgenic precursors (most often because of a greater sensitivity to insulin or higher basal insulin levels) are “androgenic ovaries” in this sense. Even if total insulin is low, even if LH and FSH are abysmally low because of body fat/nutritional insult and hypoleptinemia / hypercortisolemia… the ovary is still, genetically, prone to hyperandrogenism.

    It is shown in studies that women with HA will produce hormones in a PCOS type fashion if given replacement gonadotropins.

    Leptin, it should be mentioned at this point time, is hugely important in mediating hypothalamic amenorrhea. Leptin is a hormone secreted by the fat cells. Fat cells secret leptin when insulin is adequate and cells are full (normocytic, rather than atrophic, which is a way of saying “you aren’t too thin then leptin will be made normally”). Google “leptin hypothalamic amenorrhea” to undersatnd more. Hypothalamic amenorrhea is, basically, leptin deficiency.

    In HA, the LH/FSH gonadotropins are not being made because of low leptin and high cortisol secondary to low calorie intake and/or a relative depletion of body fat. That’s why all women with HA are either neurotic athletes, nervous dieters, and various other eating disordered types.
    However, another cause of low leptin is a relative increase in tesoterone. There is a complex interplay between estrogen, testosterone, and leptin. Leptin is almost a female hormone, in that it has a complex symbiotic relationship with estrogen (estrogen makes leptin work and raises the level… leptin makes estrogen work and allows ovaries to function to make estrogen). Testosterone, on the other hand, sorta shuts down both estrogen and leptin and replaces their effects.
    … so, women with hyperandrogenic ovaries are by definition women with lower leptin levels all other things equal (that is to say, ovaries which are vulnerable to produce more testosterone at baseline, even if total testoterone happens to be low because of hypogonadism). This baseline vulnerability to low leptin makes these women supersensitive to developing hypogonadism during nutrient stress because their leptin levels are more easily terminated/suppressed. This may have conveyed an evolutionary advantage during hunter-gatherer times, since pregnancy is more or less fatal during famine. So, it may turn out an irony that this trait which now famously causes PCOS in an agricultural society actually protected our lives during hunter-gatherer days.
    But that’s a bit of a tangent.

    Anyway, my point is this. Women who are very vulnerable to developing HA have hyperandrogenic ovaries by baseline and would otherwise have PCOS if only their food intake/body fat were excessive rather than deficient.

    Obviously, there is a level of starvation where in which ALL women eventually lose their periods. But, there is a very real reason why some women develop HA at relatively normal weights (like me) whereas many anoretics are 80 pounds and still menstruating… and that reason is how the ovary responds to insulin. The 80 pound anoretics with cycles have, if anything, hyperestrogenism and very low tesosterone, so that they find it difficult to become amenorrhetic because their leptin level is not insufficient. Women like me, who are amenorrhetic even at low but normal weights, have hyperandorgenic ovaries and it’s beyond easy for my body to become hypoleptinemic.

    So, basically, women who develop HA more easily are, hypothetically, women who also are vulnerable to PCOS. The difference is women with PCOS are eating quite a lot of carbs and have high insulin/body fat… women with HA, on the other hand, are not eating enough and have low insulin/body fat.

    But of course, if we’re talking severe starvation, severe anorexia, emaciation, this may have nothing at all to do with hyperandrogenic ovaries. Most anoretics are the opposite and that is why so many of them have menses even while starved (high estrogen and low testosterone is most associated with an AN vulnerability). When I speak of HA being related to hyperandrogenic ovaries, I’m talking about those cases who get it even when they’re at a relatively low normal weight, without malnutrition.

    Unless your weight loss was so severe that you were clinically emaciated, most likely your amenorrhea post weight loss was either related to malnutrition (not eating enough calories/proteins/zinc) OR you, much like me, have PCOS and so this innate tendency of your ovary to make more testosterone relative to estrogen keeps your leptin abnormally suppressed. Like you, all my hormones are low when amenorrhetic – I do not have high testosterone at all when amenorrhetic – but, the fact that there is this tendency to overproduce it, keeps your leptin suppressed so that you fail to activate the HPO axis and amenorrhea results.

  20. 20 On April 16th, 2009, ItsTheWooo said:

    Emma B. –
    To respond more to your statement that PCOS has no relation to “normal weight Hypothalamic Amenorrhea”, your own blog lists your diagnoses as both HA and a possible PCOS. So, this seems to suggest that your case of HA may partly be triggered by the same underlying abnormalities which cause you PCOS, if your diet changes (PCOS when eating a lot of calories/carbs… HA when eating very little calories/carbs).
    Your own case seems to support this theory (that a relative basal imbalance of slightly greater testosterone and lower estrogen production in the ovary DURING nutrient stress will make HA more likely via leptin suppression).

  21. 21 On April 16th, 2009, ItsTheWooo said:

    BTW, a DHEAs of 200+ is very high, and a tesosterone of 30 with an estrogen of only 32 does definitely suggest hyperandrogenic ovaries. Yes, total hormones are low, but having testosterone of 30 while estrogen of 32 is not normal. Leptin suppression occurs and amenorrhea results if body fat is not high enough to compensate. Women like me, and you apparently, must be fatter to be fertile and we have to keep insulin low to avoid PCOS. Which is to say, we need to eat natural diets without much starch and we can’t ever expect to be skinny minnies and still have our bodies work.

  22. 22 On April 16th, 2009, Bethface said:

    Rachel my meds at the moment are just METFORMIN. I am not diabetic but when I was diagnosed I was about to be. The metformin has really helped with my insulin. My doctor and the pharmacist both told me that some people have a hard time on metformin. To say it delicately it can put you on the toilet a lot if your diet is not good, especially with fried foods. I didn’t have this problem, thank goodness. For me this has been the miracle drug. I went on vacation and accidentally left it behind once and man could I feel the difference. The most difficult thing for me about this drug is that I have to take three times a day.

    Also when I was first diagnosed I had no period so I was put on PROGESTIN to get it back. And boy did it ever. Within days it was back and the first couple were very difficult. They were very heavy and painful. Once I went off them I have been able to sustain my period with a good diet and exercise.

    I have struggled with infertility and my husband and I are about to give up. I plan on going on birth control within the next month just to help balance out the hormone levels.

  23. 23 On April 17th, 2009, Rachel_in_WY said:

    I would also add that if you’re on the pill or on any of a number of medications that are meant to decrease insulin resistance and/or stimulate the pancreas, your body will not absorb B12 as well. My dad is pre-diabetic and on one of these meds, and when he developed a painful case of shingles, his eye doctor (of all people) told him it was probably because his diabetes meds made him deficient in B12. He started taking B12 on a daily basis and quickly improved. His GP had no idea that his meds would do that. And most gynos don’t tell you that the pill can do that either.

    And according to my nutritionist mom, getting 10-15 minutes of sun exposure each day, without sunscreen, is the best way to build up your vitamin D levels. It’s not long enough to burn, which is what really endangers your skin, but is long enough to allow your skin to crank out some all-natural vitamin D. I don’t know if 10 minutes in a tanning bed would have the same effect or not. When my daughter was tiny and breastfeeding exclusively I tried to get her into the sun for 10-15 minutes each day in order to avoid giving her the artificially colored, sweetened, and flavored vitamin supplement for nursing babies. She was just fine, and we both enjoyed stretching out on the bed in the morning sun for our daily dose of D. Ahhh maternity leave, those were the days…

  24. 24 On April 17th, 2009, Rachel_in_WY said:


    I would also ask them to do a full panel for your thyroid. My results are often hard to read based on just the TSH test, but a full panel is much more informative. I’m generally a bit hypo, but fluctuate a lot, and was actually hyper during much of my pregnancy. I insisted on a full panel test because I suspected my levels were high since I was sleeping about 4 hours a night and eating everything in the house while not really gaining any weight. And thyroid problems during pregnancy are uber-scary. But they often can’t tell with me unless they do a full panel, so I would request it as forcefully as necessary.

  25. 25 On April 17th, 2009, living400lbs said:

    La Di Da –

    I to have B12 absorption deficiency. Initially I had a B12 loading shot; since then I’ve been on oral vitamins and testing. I am absorbing some B12, and some of a lot is enough. However we are monitoring it because, yes, if whatever is interfering with my absorption gets worse, I will need shots.

    After years of “Oh, you have a history of depression and you’re fatigued? We’ll increase your antidepressants and you should exercise more and consider weight-loss surgery” I am currently REVELING in feeling good and being able to take over-the-counter vitamin B12 instead of Wellbutrin + Celexa….

  26. 26 On April 17th, 2009, La di Da said:

    @Kelly Yes, you can be deficient in any of the B vitamins. In fact people with B12 deficiency are often advised to take a high-dose multi B vitamin as it’s know that taking a high dose of one type of B vitamin can cause the others to go out of balance. The best way to tell is usually by getting pathology tests for all the B vitamins, but that may not be accurate if you’ve been taking supplements. I personally would decide which vitamin it was based on closest match to the symptoms, but I’m not a doctor or pathologist. :)

    @living400lbs Some people do do well on the mega doses of oral B12, but not all unfortunately, and also unfortunately some doctors see the studies which say the oral megadoses can work and refuse to give injections to PA patients. Which seems rather muddleheaded to me. (I’m glad you can avoid the injections for now, I find them rather ouchy. :) ) The studies were done on elderly patients and I have read that people who develop “geriatric PA” can use a different treatment regime to those who are younger or have autoimmune-caused PA.

    I’ll also echo @Rachel_in_WY’s comments about diabetes medications like metformin interfering with B12 absorbtion. Another substance that can depelete your B12 is in fact nitrous oxide (happy gas). So if you’re having procedures done with the gas, stock up on B12 supplements for before and after, especially if you have known problems with B12.

  27. 27 On April 17th, 2009, Jackie said:

    Thank you. I kept saying I was going to get my thyroid checked a long time ago, still haven’t. I have been feeling tired lately, so it is high time, I got my lazy butt over to get it done. I mean, seriously, I’m now kicking myself for forgetting so long lol.

  28. 28 On April 17th, 2009, Rachel said:

    Does your doc recommend a specific brand?

    Of vitamin D supplements? I don’t think so. I just got whatever generic the pharmacy gave me.

    @Bethface: My doctor said she’d also prescribe Metformin if the PCOS tests came back positive. I took Glucophage once seven years ago, which is the same thing as Metformin. This is when I was diagnosed with insulin resistance. I was young and didn’t understand the diagnosis and all I heard was my doctor saying “It will help you lose weight!” I noticed no effects from it whatsoever, good or bad and I had a really high-fat diet at the time. I discontinued it after a month because I thought it wasn’t “working,” that is, making me lose weight. My current doctor said that there is only a 5-10 pound weight loss associated with it, and that might be because of the gastrointestinal problems it causes. But, she said that if you’re already doing everything right — healthy diet and regular activity — it will make your body respond to those two things as its supposed to.

  29. 29 On April 17th, 2009, Brynn said:

    Thank you so so much for relating your experiences with PCOS in a public forum, you have been a world of help to me. At my last OB visit my doctor threw out the term PCOS in relation to some of my lab results, but nothing more ever came of the discussion except the diet, exercise and lose weight suggestions I get every visit.

    I had no idea I should involve an endocrinologist until reading your posts. It’s like a breath of fresh air or dare I say it hope that there is a way to fix how I feel.

  30. 30 On April 17th, 2009, Rachel said:

    @Brynn: I’m not certain yet if what I have is PCOS; I have to go for another test to rule it out. My endocrinologist referred me to a reproductive endocrinologist for that test, so I wonder if it might not be better for you to just start out there instead of with an endocrinologist (who most likely specializes in diabetes, anyway).

  31. 31 On April 17th, 2009, Rachel_in_WY said:

    La di Da,

    You’re right about taking a B-complex. According to my mom it’s best to take a B-complex because some of the Bs are absorbed best in the presence of other Bs, and if you get higher doses of one B, your absorption of some of the others will go down. I used to understand this in way more detail but have forgotten much of the explanation and just remember that it’s best to take a B-complex.

  32. 32 On April 17th, 2009, Rachel said:

    I don’t know if 10 minutes in a tanning bed would have the same effect or not.

    It doesn’t. The UC article I linked to above explains why. Plus, what good is vitamin D when you’ve got cancer from tanning bed exposure.

  33. 33 On April 17th, 2009, Emma B said:

    Wooo, I’d appreciate it if you wouldn’t play amateur reproductive endocrinologist. For one thing, the comment section of someone else’s blog isn’t an appropriate place to discuss my specific labwork. For another, you’re making judgments on the basis of incomplete and outdated information — those test results are four years old, have mostly been repeated, and reflect only part of my overall endocrine picture. My actual RE eventually came to the conclusion that I most likely do NOT have PCOS, because I don’t fit the diagnostic criteria now that the HA has been taken out of the picture.

    As for your assessment of HA, you’re still overlooking a couple of key points, the first of which is that testosterone/estrogen ratios are naturally somewhat skewed in HA. The ovaries are responsible for only about 25% of testosterone production, with 25% being produced directly by the adrenal glands and the remainder being produced from about equally ovarian and adrenal precursor hormones. Even if the ovaries are shut down, the adrenal pathways are still active, so the ratios look different than if the ovaries were producing testosterone and estradiol at normal levels.

    I also think you misunderstand the function of leptin and its interaction with the hypothalamic/pituitary feedback loops. Leptin levels impact the reproductive system at the hypothalamic level by inhibiting or stimulating the production of GnRH, rather than directly interacting with estrogen and testosterone. High levels of estrogen and testosterone also inhibit production of GnRH (and low levels should spur production), but it does not follow that low leptin production is necessarily caused by high estrogen/testosterone — in fact, there’s evidence that it goes the other way, and that hypoestrogenism causes lowered leptin levels. There is also a direct correlation between testosterone levels and leptin in non-obese women.

    Since high testosterone and estrogen aren’t the only things which force leptin levels down, there are HA pathways which in no way involve hyperandrogenism and PCOS tendencies. As a matter of fact, my HA happened in the context of going off BCP after many years — my low leptin levels couldn’t have been produced by ovarian hyperandrogenism, because my ovaries had been completely suppressed for better than a decade. I might not have even developed HA if I’d previously been cycling normally, rather than trying to reboot my hypothalamus while already in a fragile state from a major weight loss and intensive exercise.

    It’s quite possible that women with a tendency to hyperandrogenism may be more susceptible to develop HA, but the converse you assert — that HA is always the result of hyperandrogenism — is not necessarily true. (And now I’m done threadjacking… sorry about that.)

  34. 34 On April 17th, 2009, Emma B said:

    To those of you considering seeing a reproductive endocrinologist for PCOS, be aware that you may have to shop around to find one whose practice isn’t exclusively focused on getting you pregnant. RE clinics affiliated with academic institutions are frequently better than private clinics in that regard, as the latter tend to be attuned to IVF cycles rather than simple PCOS management.

  35. 35 On April 17th, 2009, Rachel said:

    (And now I’m done threadjacking… sorry about that.)

    That’s okay. You and Wooo lost me a long time ago.

  36. 36 On April 17th, 2009, Sassyinkpen said:

    I’m another one who was told by her doctor recently that Northern Winter sunshine just isn’t really strong enough to give us all the vitamin D we need and she suggested we start taking supplements.

  37. 37 On April 17th, 2009, spacedcowgirl said:

    Rachel_in_WY, thanks for that suggestion. It jogged my memory that I had actually had a full thyroid panel done a few years ago, so I went back in the file to see what it said. Now, granted this was in 2005 and I am 32 now vs. 28 then, and weigh about 100 pounds less. So there are probably some real physiological differences. But the weird thing is that these results show my TSH at its usual “OK to high-ish” level (2.71–other test results I saw in the file indicated that it is usually around 3 or a little over)–but so were my total T4 and T3! I must have just put these results to the back of my mind because they seemed to indicate that my thyroid was OK. But now that I look at it again, the total T4 was at 13.3 ug/dL vs. high end of “normal” range at 10.9, and T3 255 ng/dL vs. high boundary of “normal” of 181. Free T4 was in the normal range. I remembered these results were OK, but didn’t recall them being that high. You would think the TSH would have been low if there was that much hormone floating around. I’ve seen a few things online about “thyroid hormone resistance,” but this sounds quite rare, and I’m not sure how you would treat it in any case.

    It’s just weird. I suppose the most likely explanation is that everything is OK, but I have low basal body temperature (usually 97.3 or below before I ovulate, mid to upper 97′s after) and this fatigue business, and the family history of thyroid issues, and a reproductive symptom that seems to be associated with hypothyroidism. Probably like anyone else, I can check off other typical symptoms too, but I feel like those are the most concrete ones. I just feel like something isn’t quite right, but I hate to be a hypochondriac. Especially a hypochondriac fat girl [shakes head ruefully at self]

    Sorry for the “all about me” business. Sometimes I feel like I learn more from these types of threads than I do from actual doctors, considering they are usually trying to get you in and out of there in 15 minutes. Rachel, thanks also for the suggestion to use my family doctor for these types of questions. I have always done that in the past, but haven’t felt willing to push back about the TSH reference range controversy, so it usually goes like they order a general blood workup (cholesterol, blood sugar, liver, thyroid, etc.), it comes back, they tell me everything is fine, I say OK. I need to ask more questions, probably.

  38. 38 On April 18th, 2009, ItsTheWooo said:

    Emma B – Sorry for mentioning your labwork. The labs were displayed on your own public journal sidebar, so I didn’t think it would be considered rude.

    I made my statements baring in mind what is typical for hypothalamic amenorrhea.
    BTW, what I said about testosterone suppressing leptin, and hypothalamic patients having ovaries which were hyperandrogenic… this is not something I pulled from my butt, there is research to support this.

    I understand how leptin functions rather well. I am aware it works on the hypothalamus to increase GnRH which increases gonadotropins LH/FSH. I am on leptin right now actually, I’ve done plenty o’ research ;) .

    I did not say high estrogen will cause hypoleptinemia. High estrogen will promote greater efficacy of leptin signalling and a small increase in leptin level. I said testosterone will lower leptin.
    Low estrogen will cause hypoleptinemia, but high testosterone will also cause hypoleptinemia. These are not mutually exclusive statements, they support each other when one things about the “big picture” (why leptin changes the way it does depending on hormones?). As I said in my earlier post, estrogen and leptin are symbotic hormones, they potentiate each other, whereas the presence of testosterone seems to “terminate” the primacy/dominance of either one. Which is a convoluted way of saying, biologically leptin is designed to be more integral to female physiology therefore female hormones bolster its function and male hormones suppress it. This makes sense considering a key purpose of leptin is to induct life-sparing hypothalamic amenorrhea during starvation and stress. Low estrogen is not just a result of low leptin (starvation) but low estrogen itself is an indicator of starvation as body fat and insulin make estrogen, as well as making it more biologically active. Therefore, low estrogen itself is yet another indicator of starvation (like low body fat, like low insulin) and it predictably reduces leptin.
    High testosterone does not indicate starvation, but it does indicate being male therefore not requiring dependence on leptin to monitor/regulate fertility.
    These are crude genetic instructions. “If estrogen low, induct starvation response”. In a natural environment it all works out.

    As for your insinuation that leptin is often secondary to low estrogen… that just isn’t true. Leptin is definitely primary issue with hypothalamic amenorrhea, evidence of this is that I resolved 4 years of HA when I began taking shots. My cycles are still not regular, but I do have them and I do not have PCOS symptoms at all (because I eat a very low carbohydrate diet). I relate my leptin deficiency to massive weight loss (although at a healthy weight now) combined with the genetic tendency toward hyperandrogenic ovaries which are key in PCOS. At baseline, before inducting leptin therapy, my tesosterone was 60 which is higher normal, and DHEA was just slightly elevated. I had no symptoms of PCOS and was absolutely HA (LH 2, FSH 4.6).

    More evidence the leptin is primary…In addition to resolving fertility problems the leptin has this whole-body normalizing effect. I don’t feel like a starved person anymore. I feel like a naturally thin person. Assuming I maintain my healthy diet that controls my glucose and insulin, I feel absolutely healthy and energetic and not at all hungry starved tired etc which are issues when I’m not on the leptin.

    I do not think hyperandrogenic ovaries are the only component of HA. Starving anoretics, severely emaciated, are severely leptin deficient and this has nothing to do with ovarian function at all. There is also a huge stress link involved in HA.
    When I speak of HA involving hyperandorgenic ovaries, I am talking about cases like myself and possibly you, women who develop HA very easily. There is a reason we develop it easily, and that is leptin is more easily suppressed in our bodies. This is shown in research that when you take normal weight HA women and infuse gonadotropins, they easily develop a hormone profile like PCOS compared to normal women.
    I believe the genetic trait of hyperandrogenic ovaries is an archaic anti-famine trait. The slight production of tesosterone inducts infertility more quickly when nutrients are scarce. When eating an agricultural diet, the irony is it produces maladaptive infertility of PCOS, but on a hunter-gatherer type diet it produces adaptive infertility of HA.

    And, I also want to clarify that I do not think high androgens cause hypoleptinemia. I think that a tendency toward higher androgens at a baseline, COMBINED WITH nutrition / stress, makes the difference between “low but normal leptin” and “leptin too low to ovulate”. It is that extra push that says “no, no babies for now, not till we eat some more”.

    But, I’m rambling.

    But, I started rambling a long time ago, haha.

  39. 39 On April 18th, 2009, Bethface said:

    Itsthewooo I was wondering what sort of training you have in the field of medicine? Are you a doctor or a nurse? Just curious after everything you have written.

  40. 40 On April 18th, 2009, La di Da said:

    @spacedcowgirl There does exist a syndrome of thyroid hormone resistance, and from what I’ve read it usually takes very high doses of either Synthroid + Cytomel, Armour + Cytomel, or Armour + Synthroid. Has your reverse T3 (RT3) level been tested? RT3 blocks the action of T3, the most metabolically active thyroid hormone. People whose FT3/RT3 ratio is out of whack are usually treated with Cytomel alone, at least until back in balance. You’d need to find a doctor who was familiar with treating thyroid in this way. Google for the “top thyroid docs” list and see if there’s one near you.

    And FWIW, I had a TSH of 2.5 and my doctor considered that high enough to start thryoid replacement therapy, based on the fact that I also had significant clinical symptoms of hypothyroid like low basal temperature.

  41. 41 On April 18th, 2009, spacedcowgirl said:

    La di Da–thanks so much for that information. I am compiling a list of lab tests I should ask for, and I will make sure the reverse T3 is on it.

  42. 42 On April 19th, 2009, ItsTheWooo said:

    Bethface – I am a RN, but my knowledge about this issue is only partially influenced by what I learned in school. Most of what I say is based in research I did to understand my own health problems.

  43. 43 On April 21st, 2009, pam said:


    Came across your comments as I searched for connection between Vitamin B12 and Vitamin D deficiency. 42 years of age this year. Am insulin resistant, have underactive thyroid, PCOS, spermicidal anitbodies, vitamin B12 and D deficiency, had irregular periods when teenager coupled with severe acne. Take Eltroxin 50 mg everyday, B12 injection every month, low carb diet, no wheat, dairy, v little alcohol (gin because it made from the juniper berry and not from the grape) lots of water, walk 2 miles most days and still felt fatigued. Bed at 9.30pm. Wake at 6.30pm. Took just 2 sessions on the sunbed/tanning bed this week. Feel like a new woman. Have one child, now 9, naturally and even though I was told I had 1% chance of doing so. When I look back it only happened when the I started my current regime. Never sure that all of the above were related but your comments prove they obviously are. Although I find my B12 levels seem to graviate to the lower level all the time. I would like to say to the couple who are about to give up on having the baby. It was when I gave up the fertility treatment Clomid and started the routine above that I became pregnant within the space of 12 weeks and that after 5 years. Perhaps just a miracle. Best of luck ladies in your pursuit of the control of these complex issues.

  44. 44 On April 21st, 2009, Charlynn said:

    The eerie similarities between you and me never end. My vitamin D levels are lousy and I got a prescription last week to correct the imbalance. More here:

  45. 45 On June 2nd, 2009, Here comes the sun (vitamin) » said:

    [...] few weeks ago I posted about how I have the vitamin D levels of a vampire and was prescribed some 50,000IU of it a week [...]

  46. 46 On August 4th, 2009, Hard to swallow » said:

    [...] since I found out a few months ago that I was severely deficient in vitamin D, it seems that it’s there’s been a barrage of health articles on the [...]

  47. 47 On March 16th, 2010, Catherine Davies said:

    For more years than I can remember I have been tired and aching to distraction, in the past I had b12 injections but they didn’t really help much, also had been tested for rheumatoid arthritis as my mother had that in the worst possible way but came up negative, my body doesn’t absorb folic acid so take tablets for that.
    I have now started a new course of B12 Jabs and have now been told by my consultant that I severely lack vitamin D,I work in a large park and am in the sun quite a bit (when we get it, I live in London)so have taken my first 2 vitamin D tablets and will await the results but no one really knows why my body doesn’t absorb these vitamins I admit I dont have the best diet but do eat ok, I am hoping over the next few months to have a new lease of life.
    Will let you all know.

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