Pernicious Anaemia Society

Need some guidance, please

This is my first time posting, although I have been reading posts for several weeks. I am trying to figure out my next move as my GP seems uninterested in trying to help me sort things out.

I am a 49 yr old female living in the US. I have been feeling tired and run down for several years. I thought nothing much if it as my life was filled with a terminally ill father that I was helping take care of, 2 kids still living at home, peri menopause and moving/building a new home. In July of this year, I woke one day and felt like I had a lump in my throat. After several days and the sensation not passing I went to see an ENT. I was diagnosed with Silent Acid Reflux. To make a long story short, it was a misdiagnosis which led me down a road of mega doses on PPI's and H2 blockers and even a trip to my Gyn. Dr for hormones! I felt horrible on these meds and was getting worse day by day. I finally went to a GP who, after hearing my story, ordered only a lipid panel. He felt I was stressed and anxious and that was all! I had to ask him to add an iron, b-12, vitamin D, magnesium and thyroid to be tested. He agreed but told me I'd have to pay for them out of pocket. My symptoms were/ are very tired, shortness of breath ( my biggest complaint), hair falling out, chest pressure, occasional ringing in the ears and forgetfulness. I had these bloods run 10-4-17 My results were:

Serum iron - 45ug/dL (40-150)

Ferritin 20.0 ng/mL (11.0-306.8)

WBC 4.84 (4.00-10.00)

RBC 3.85 (4.20-5.40) L

HGB 12.0 (12.0-16.0)

HCT 35.9% (37.0- 47.0) L

MCV 93.2fL (81.0-99.0)

MCH 31.2 pg (28.0-32.0)

MCHC 33.4 g/dL (32.0-36.0)

RDW 12.7% (11.5- 14.5)

PLT 289 K/uL (150-450)

MPV 10.5 (6.0- 9.5) H

Vitamin D 36 (30-100)

Magnesium 2.0mg/dL ( 1.8- 2.5)

TSH W/reflex FT4 2.30 ( 0.44- 4.37)

Vitamin B-12 234pg/mL ( 180-914)

When the nurse called to give me my results she told me they were all normal and I was good to go! I had to ask about taking an iron supplement. She asked me why I wanted to take one and I told her I was having symptoms such as shortness of breath. She asked the dr about me taking them and he agreed I could take 1 pill per day. No suggestions as to dosing or type. When I went in for my follow up appointment after getting my results, my Dr actually congratulated me for being so healthy and for doing such a great job with my health! When I pushed for him to go over my blood results he agreed but was adamant that I was not anemic and that my hair falling out and shortness of breath was from something else. When I asked , " like what?" He told me.., " stress." I then had a discussion with him how I felt my numbers, while not lab low were pretty close and I really wanted to keep myself out of a pathological state and wanted to feel better than I did. He agreed with me and we discussed my B-12 as he felt my iron panel was good and I would not be suffering any ill effects from my numbers. ** I don't agree with him on this and even though I tried to talk to him about my ferritin and iron and hemoglobin, he insisted they would need to be lower for me to feel any ill symptoms. He did agree that my B-12 was on the low side but felt it was possibly from the mega doses of PPI's I was on for several months prior. He ordered more blood test including a serum MMA, folic acid and a homocysteine test. These bloods were drawn on 11-15-17. ** I had been off all PPI's and all meds except for iron tablet since mid September. Results:

MMA 0.20mcmol/L (<0.41)

Folic acid 19.5 (5.9- 25.3)

Homocysteine assay 11umol/L (<15)

At that appointment he also ordered me to get another follow up CBC, B-12 and Iron panel done in December.

I had my follow up bloods drawn on 12-18-17. These are the results:

WBC 4.45 K/uL (4.00-10.00)

RBC 4.31 10^6/uL (4.20-5.40)

HGB 13.5 g/dL (12.0-16.0)

HCT 39.7% (37.0- 47.0)

MCV 92.1 fL (81.0- 99.0)

MCH 31.3 pg (28.0- 32.0)

MCHC 34.0 g/dL (32.0- 36.0)

RDW 11.9% ( 11.5 - 14.5)

RDW - SD 40.4 for (35.1-46.3)

PLT 282 K/uL 150-450

MPV 10.0 fL (9.2- 12.5)

Serum Iron 57 ug/dL (40- 150)

Transferrin 276 mg/dL (175-351)

TIBC 386 ug/dL ( 236- 476)

% iron saturation 15% (20-50) L

Vitamin B-12 200 pg/mL (180-914)

So when the nurse called with my results, she told me my ferritin could still use some tweaking, so Dr said to keep taking an iron pill once per day. She told me my iron and b-12 all looked good. I questioned if the Dr wanted me to take a B-12 supplement or anything to which she replied, " no." She told me he would re evealtuate my ferritin at my annual exam, which is in October. So my Dr doesn't plan on seeing me again for 10 months and he feels there are no issues with me other than stress. I am not a stressed out person by normal nature. I am a bit stressed as I don't feel well and am not happy that I don't understand why. My dad passed away over a year ago, so that daily stress is over. My kids have moved out and are at college and my house is built and we are living happily in it. My main stress now is not feeling well, tired, shortness of breath and chest discomfort. I have been reading this site for a couple weeks and have learned so much. I don't have the neurological effects as many here describe, I am occasionally dizzy and do feel my heart is beating fast as times and every once in awhile I will hear ringing in my ears. I do know now that about 10 years ago I had many neurological symptoms of b-12 deficiency but was never tested. I had all the above symptoms but also had sores in the corner of my lips and vertigo so bad I was unable to walk many times, constant ringing in my ears. I took some sublingual b-12 then just by coincidence as my mom had brought me some. I stopped using them as it seemed to make my vertigo worse. My symptoms seemed to improve for the next several years but now I'm feeling poorly again. I was eating a very low/no fat diet back when my symptoms were so bad, so I'm thinking that might have been the cause of it then.

I did do a private thyroid panel as I was not satisfied with the limited testing my GP had ordered. I had this test performed at a private lab on 12-12-17. Results:

FREE T3 2.8 PG/ML (2.2- 4.2)

FREE T4 1.02 NG/DL (0.80- 1.90)

TSH 3.57 UIU/ML ( 0.400 - 4.100)

T4 6.0 UG/DL (4.5- 12.0)

Thyroid Peroxidase AB < 1 IU/ML ( <9 )

Thyroglobulin AB 1 IU/ML (<4 )

So my big question that I need help answering is... do I need to do any further testing to see if I have a b-12 absorption issue or should I assume ( as my Dr has) that I am fine as far as B-12 and absorption goes? I do want to take some type b-12 supplement but I also know I shouldn't take anything if I plan anymore b-12 testing as it won't reflect a true measure. My b-12 is still dropping. I have increased my iron and B-12 containing foods and added more meat to my diet since October. I don't drink alcohol or take any meds other than the iron tablet. My Dr probably won't order anymore tests for me, but I can go to a private lab if needed. I have looked and they don't have the IF test but they do have a gastrin test they say can help diagnose PA. Would this test be helpful in determining if my stomach can break down the b-12 to be absorbed? Am I correct that the MMA and homocysteine tests only show intestinal absorption issues? I'm very tired of trying to figure this out on my own and basically trying to stay one step ahead of my Dr so I can have conversations with him on the subject. I am trying to either fix myself if I have an issue or get in front of it if I am starting down a PA road before I have severe symptoms. Also, I assume most of these issues could be iron related only and not specifically b-12 issues. I know my Dr says I should be feeling good based on my numbers, but I'm not. Any advice would be greatly appreciated. Thank you.

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Hi Ajaeger

Your Vitamin D level is on the "low side"

"During the past decade many vitamin D researchers and expert groups have argued that a blood level of at least 30 ng/mL is optimal; some advise even higher goals— 40 or 50 ng/mL" (University of California)

Here are 8 signs and symptoms of vitamin D deficiency.

Getting Sick or Infected Often. ...

Fatigue and Tiredness. ...

Bone and Back Pain. ...

Depression. ...

Impaired Wound Healing. ...

Bone Loss. ...

Hair Loss. ...

Muscle Pain.

I am not a medically trained person but I've had P.A. (a form of B12 deficiency) for more than 45 years.

I wish you well

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Thank you for the response clivealive. I always find your responses to be very informative and thorough. I will look into the vitamin D.

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I also think that despite your B12 levels also being "on the low side" perhaps your doctor could "take a leaf out of" what The British Society for Haematology guidelines say on the Diagnosis of B12 and Folate Deficiency". They recommend that "In the presence of discordance between the test result and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment".

In other words, look at the patient and their symptoms as well as the computer screen. NORMAL! I hate that word...

Take care now.

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grassrootshealth.net

vitamindcouncil.org

Your VitD needs to be 60 or more. Check out the dosing according to your result in the first link. I would suggest 5000iu's until you increase your level and then maintain at around 2500 iu's. Important co-factors are magnesium and VitK2-MK 7.

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Ajaeger,

'my B12 levels are still dropping' - do you have earlier results for B12 that show higher levels of B12? The difference between 234 and 200 is actually in the noise level that you would get from running the serum B12 test twice on the same sample so doesn't indicate that your levels are dropping.

MMA and homocysteine are harmful products that build up in your system if your body doesn't have enough B12 to recycle them in to useful building blocks for key processes. They are potential indicators of how your body is metabolising B12, and are not indicative of absorption problems, such as PA. Your MMA and homocysteine have both come back well in range - good indicators that you don't have a problem with B12 in your cells - which really does point away from B12 being the issue.

Gastrin is likely to be a much better test at rulling out PA than IFA - Gastrin levels will be very high in someone with PA so easy to pick up. Unfortunately the IFA test isn't very sensitive and tends to give false negatives 40-60% of the time depending on the assay method.

Your first set of blood results did have a few indicators that your iron levels weren't right but this does seem to be resolving.

This is an article on Vit D test - as Clivealive suggests might be worth looking into that a bit more. Think the ranges used in the UK may be different from those used in the US though - or it may be that we normally use a different test.

labtestsonline.org/tests/vi...

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Thank you for your response, Gambit62.

I don't have any blood tests before my October results. I said my "B-12 levels were dropping" as I was comparing my 2 different blood tests done almost 2.5 months apart. My B-12 level dropped from 234 in October to 200 in December.

I will get the gastrin test done since it seems to be a decent indicator and would help guide me in figuring this out and will give me peace of mind that it is not an absorption issue. My dad was never diagnosed with PA, but I feel certain that he had it and most certainly contributed to his death. He had his illeum removed in the 1984, had stomach ulcers as far back as I can recall, ate antacids constantly and was diagnosised with Chrons disease about 2 months before he died. He suffered terribly for many years from a body that was shutting down slowly. In his last months, he had most of the very severe symptoms of B-12 deficiency. I asked my mom about his B-12 a few a weeks ago and she had no idea what his levels were as they had never been discussed or addressed in all his decades of health issues. His death certificate says he died of CHF, renal failure and malnutrition. He weighed almost 180lbs at his death, so he was clearly having absorption issues as he was eating a normal diet up to his death. I think he let his absorption issues get so on top of him, that his entire health broke down and eventually led to some (many) of his health issues. This is why I might seem a bit reactive to "low but normal" lab result - particularly when I saw my B-12 level drop for no apparent reason, it's something I feel I need to do as many times Dr's will find a more obvious, " easy" cause of a symptom and not dig for the root of the cause and treat it from the ground up.

Thank you for your guidance and explanations. They are very helpful. I will look further into my Vitamin D levels.

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to reiterate - the lowering from 234 to 200 is actually in the noise level so isn't conclusive for a drop in B12 levels. If the first sample had been tested twice it could have resulted in one measure of 234 and one of 200. Similarly if the second sample had been tested twice it could easily have given readings of 200 and 234. You could just as easily have had a reading of 200 in the first test and 234 in the second.

If your father had his ileum removed then he would definitely have had a B12 deficiency unless he had received B12 shots/used very high dose supplements - this is not because he had PA (though he may also have had PA) but because the ileum is where, on average 99% of your dietary B12 is absorbed.

Your B12 levels are certainly in the grey range where people may be deficient at the cell level, but the indicators for what is going on at the cell level - MMA and homocysteine - are both coming back well within the normal range so don't indicate that your cells don't have enough B12.

I'm not saying that there isn't something B12 going on - I'm just saying that the tests aren't providing evidence that there is anything B12 going on, so pursuing B12 as the only option is not a course that I would advise.

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Thank you very much for this explanation. You have answered my question. I wish my GP could have answered my questions reguarding this issue as well as you have.

Have a good day and thank you again!

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i am not sure as to all the test results ins and outs but i am sure about b12 result it is far far to low anyone under 500 should be on b12 injections for the rest of life you will find your hair will grow back and you will feel much better ---if your gp will not prescribe b12 injections simply order them from the internet from a reputable and trusted source / pharmacy it is a simple injection just under the skin i inject into my abdomen twice weekly (one ml) the injection itself can be uncomfortable for a short period of time after each injection---you would initially inject one ml once daily for about one week---if you are not happy with this please seek further advice or find a gp that will help you---NOW FOR THE BIG ONE IN MY OPINION METHYLCOBALAMIN IS THE BEST B12 INJECTION--IF YOU CANT GET METHYLCOBALAMIN THEN GET HYDROXOCOBALAMIN --AGAIN IN MY OPINION STEER CLEAR OF CYANOCOBALAMIN AS IT CONTAINS CYANIDE AND CAN CAUSE A BUILD UP IN THE SYSTEM--no doubt i will get a lot of criticism about CYANOCOBALAMIN BUT THAT IS MY OPINION I HOPE THIS IS OF SOME HELP AND GOOD LUCK

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a) the majority of people are fine with levels of 500 pmol/L. It is only if symptoms are present that any consideration should be given to the need for injections.

As the symptoms overlap with a number of other conditions it is advisable to also rule those out ... and if every single supporting test for B12 is pointing away from B12 (eg MMA, homocysteine) then it is best to look for other possibilities first.

b) the cyanide molecule in cyanocobalamin is extremely tightly bound to cobalamin and an extremely small amount of a very large molecule. People with lebers (a rare genetic condition which gives a particular senstivity to the molecule) should not take cyanocobalamin but it is perfectly safe for other people.

hydroxocobalamin is used as the treatment of choice for cyanide poisoning because of the lack of toxicity - it is transformed into cyanocobalamin in the process. The amounts used in this process are 5000x the amount used in an injection. If there was any realistic risk from cyanocobalamin this would not be an effective treatment.

c) methylcobalamin is less stable than either hydroxo or cyano. it may work well for some people but this isn't the case for everyone. There have been reported cases of people who are unable to convert methyl to adenosyl (the other form that is used in cells). some people also find that methyl makes them feel extremely unwell.

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Thank you, drareg.

I appreciate your post and your advice. It is good to know you have gotten relief and found the right type b12 for yourself. I agree, 200 seems on the low side. I hope I can bring up and feel better but also understand my symptoms might be stemming from other issues. I think at my level, getting my b12 up can't hurt! I was hoping to get insight as to further testing if necessary to figure out if it was an absorption issue on my part. I've gotten some great advice and valuable opinions and I appreciate it very much!

All my best.

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Hi drareg That's a bit of a "sweeping statement" at the end of your post.

I've been having cyanocobamalin 1mg B12 injections every four weeks for 46 years and I'm not dead yet...

My doctor. who first prescribed them for my P.A. in 1972, said that without them I had only "two years to live".

At the time cyano was the only type of B12 injection available and when hydroxocobamalin was introduced in the mid 1980s I had an allergic reaction to it and couldn't "last" the three month interval.

I think cyano is still the B12 "injection of choice" in America and as Gambit62 says "the cyanide molecule in cyanocobalamin is extremely tightly bound to cobalamin and an extremely small amount of a very large molecule".

I'm not a medically trained person.

I wish you well and bid you goodnight.

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good for you i am entitled to my opinion the good stuff is methylcobalamin and the most purest and easiest absorbed --i never said cyanocobalamin would kill you what it can cause a build up of cyanide in the body if it works for you -then yippee but do please take care and read properly what is written and not make assumptions----to make an assumption is to fool yourself---cyanide is a well known poison cyanocobalamin contains cyanide you work it out for yourself ---i was on cyanocobalamin for over two years and my health deteriorated to such an extent that i thought i was going to die it was only when another gp after discussing in depth with me the possible dangers of a build up of cyanide from cyanocobalamin and changed me to methylcobalamin that my health vastly improved--so yes i do have experience in this area and yes for anyone needing b12 inj. i do recommend methylcobalamin again in my opinion --i would rather be on nothing than be on cyanocobalamin--- have you experience of using methyl cobalamin???? if not then how can you compare the vastly better benefits of methylcobalamin

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I use a methycobamalin spray between injections.

Your reaction to the cyano may be unique to you in the same way that I reacted adversely to hydroxo - we are all different.

If any of the many millions of users of cyano had died from cyanide poisoning I think we would have heard about it and the product would have been withdrawn.

You are indeed entitled to your opinion but you decry the use of cyanocobamalin on the evidence of your own experience - my opinion is based on my 46 years usage and that of many other patients prescribed with either injections or sublinguals.

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Merry Christmas.. I hope you start to feel better soon.. just a quick response your ferritin is too low. I have celiac and deal with this quite frequently. I receive iron infusions when it drops below 50 they are life changing. A really big indicator that you could use 1 is your very low %saturation and your higher on the scale tibc. These results in conjunction with your complaints of shortness of breath should get you in to the infusion clinic. I would definitely consider seeing a gastro if you eat a good diet. Also the anemia panel can be very deceiving if you have b12 deficiency and iron deficiency. B12 causes large red blood cells and iron causes small red blood cells. This day and age where most physicians do not actually understand lab results and are just looking at ranges they may not have considered this. Most physicians receive about 4 hours of nutrition training and have no idea how life altering nutritional deficiencies can be. I went from healthy and active loving life to bed bound when I was first diagnosed. To get my life back by changing my diet and having iron infusions. Unfortunately now I am deep in the recovery of the b12 deficiency and the neurological symptoms are quite severe. I do hope this helps you get the treatment you need to get to feeling your best soon.

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Thank you for your reply, Peepsdog.

I agree, my ferritin is too low. I am working to correct it through diet, the iron supplement and controlling my monthly periods. I was having very heavy, prolonged monthly bleeds.

I am glad you were able to get relief from your breathing issues from iron infusions, but sorry to hear you are now deep in b12 issues. I hope you are able to get them sorted out and resolve the severe symptoms you're suffering.

All my best.

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Hi there, i also live in the U.S. you can call the weight loss clinics in your area and ask if they offer straight b12 injectiins. Mine cost $15 per injection. You can always get tested for IFA 2 weeks after a b12 injection. I had been taking 1000mcg of b12 4X daily, spread out during the day, for 3 weeks prior to getting my first injection. i was shocked by being able to suddenly breath better the following morning. My b12 def had crept up on me so slowly over the years i hadnt realized breathing was an issue.

If the injection improves your ability to breath, you will know you need it.

I would definitely have the gastrin testing done. You may have low stomach acid and if you do, you can address that instead of stumbling around trying to point your dr. This way and that. Having to be the one concerned/researching your symptoms is so frustrating!!

Maybe once you get your stomach acid back to where it needs to be, if that is found to be the issue, through using lime juice or betaine hcl, your body might absorb b12 and iron and all nutrients better and continued supplimentation might not be needed.

Best of luck nd Merry Christmas!

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Hi KimberinUS . Thank you for your response. I have looked into getting b12 injections at the private lab where I have done some blood testing. They use the methycobalamin form. The injection also contains several other vitamins (C, B1, B2, B3, B5 and B6) minerals and amino acids. They are selling it as a energy/weight loss injection. They are $20 each. Is this what you're referring to? Or are there single ingredient only b-12 injections without all the other added vits and minerals? I wondered if the other vits and minerals were a good idea. I was going to look into it further as soon as the holidays are over. When I was at the lab for my thyroid panel, 3 people came in the get b-12 shots in about a 20 min time frame.

It sure would be nice to get a big lung full of oxygen rich air! I've started drinking apple cider vinegar diluted with water to see if that helps in case it is stomach acid issues. It doesn't seem to hurt, so I will continue.

Thank you for your post and the advice. It is very frustrating to try and figure everything out and feel your Dr is not as on board as they should be. I'm not in any critical condition, so feel like I'm not getting the support I need from my Dr. Hopefully, I will feel like myself soon. I have had a mental picture of punching Dr in face when he congratulates me for being so healthy or tells me my hair is falling out because of stress! It's so nice to be able to come here and get advice.

Thanks again and Merry Christmas to you, too.

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I am referring to single ingredient b12 injection. 1000mcg of b12. The ones for weight loss only have appox 300 mcg of b12 plus the other ingredients. I would definitely take it if i couldnt find a straight b12 injection option. You have to ask specifically if they have straight b12 injections because they dont seem to have many folks asking for them, so they dont just suggest them when you call. I have 2 options in my area and i must have called 10 places. One is a weight loss center and one is a minor emergency care office. I live in an area with appox 200k people so if you live somewhere with fewer folks then it may not be an option, but i would call around, as both of my places only offer weekly injections.

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I live in Austin, Texas which has a million or so in population. I will start calling places as I feel certain I can find a place where I can get a b12 only injection. Thank you for answering my question. You've been very helpful.

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Fyi, many people get b12 injections and feel more energy! I was hoping for this effect but i had the opposite. I had to take a 3 hour nap appox 2-3 hours after my first probably 6-8 injections. I think that is because if you are deficient your body NEEDS the b12 and so a lot of "work" starts happening once it is in there. I say this to suggest you call places this week and if possible get the injection on Saturday if you are off on Saturday so that you have the ability to nap if you need to.

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Great advice and good to know!

Id be so happy to get my levels up and feel better! I've pretty much lost half this year feeling crappy and trying to figure it out! I'm so tired of just getting the basic life things done and have nothing in me leftover for fun activities or enjoying things I use to love. Getting on a track to feeling better would be a perfect way to start the new year!

Thank you so much for your response!

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Hi Ajaeger. You couldn't do better than Gambit62, Clivealive and KimberinUS. They know there stuff. I was diagnosed with PA several months ago and have learned that docs need to treat the patient not just what some labs level of normal is. My diagnoses was pretty oblivious so my heart goes out to anyone with borderline levels and issues. In my opinion, your D could bring on some major issues. I had that and was very sick. You might also be starting to get low on b12 that doesn't have to do with an absorption problem. It might be regular pill supplements will help. I wish your doc would run other tests and then give you some kick butt D3 and b12 supplements. Hopefully you can get some further testing done geared to your symptoms. Just remember to refrain from any supplements a week or two before testing. Best of luck

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Thank you Wowo23.

This forum has been so helpful and informative. I have found the best advice from the thoughtful and concerned people on this site.

I will look into my D levels. My Dr never paid any attention to them, so this will be a new avenue for me. I have been avoiding taking any type supplements ( other than the iron) because of testing purposes. I feel like I might get the gastrin test just for peace of mind. If it comes back normal, then start b12 supplements since my numbers were in the lower side of normal.

Thank you for your response, I really appreciate it.

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Ho Ajaeger. Yes, it's good you're getting tested. 200 is low in my book. Actually, to me, anything below 300 isn't right and can cause horrible symptoms. I'm hoping you don't have an absorption problem and your symptoms can be eased with D and b supplements. I think docs should pay attention to patients instead of one size fits all lab levels. I was really sick and it was my oncologist who checked my b12. It was 93. My primary took over and did a instrinic factor and that was thru the roof. Also my MCV is always high and RBC is always low. Those are classic absorption signs. I will pray you get answers soon. Plz keep me posted

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Hi, sorry I haven’t read the answers as there’s quite a bit to look at....but a quick look at your results I can see your Iron, Vit D and B12 are on the low side which could possibly cause those symptoms... also low Folic Acid causes shortness of breath.

Whilst u can take Iron and Vit D....the B12 is always more complicated.

Like u said if your doc is going to do further tests on B12 then taking B12 will skew the results.....so it’s a big of a waiting game.

There is no accurate test for diagnosing absorption problems for B12, but if they carry on dropping that’s an indication of some sort of absorption problem.

The simplest route would have been to get B12 injections to get your B12 levels high ( you also need to take Folic Acid together with B12), recommended daily dosage of 400ug once daily.

6 loading doses and weekly shots of B12 for about 3 to 4 months would make you feel like a different person and you would know that B12 is part of the problem.....but if u did that u wouldn’t be able to have further testing on B12.

Whilst u would definitely benefit from B12 shots, you wouldn’t be able to get diagnosed with absorbtion problems.(PPIs don’t help either when it comes to B12), would lower your B12 absorbtion.

Eating no fat or very low fat diet is not good either as your body needs fat for proper function.

It’s definitely Iron, B12, Vit D and Folic Acid which are causing the problems but to get a definite diagnosis of B12 absorption problem requires a lot of testing and waiting and going through not taking any B12 until all tests have been done.

I had the same problem with Folic Acid, Vit D Iron and B12....I knew B12 would be a difficult one to diagnose. My neurological symptoms were too much to wait around, including all those u listed.

Whilst you simply take tablets for the others....B12 diagnosis was the problem. I chose not to wait and self inject with B12 and have been doing for the last 2 years (1 injection every week at the start for about 3-4 months then reduced and stayed on 1 injection every 2 weeks.

So I have a decision to make.....wait until all B12 testing has been done or take the B12 injections.

If you take the injections for 3-4 months....you can then stop and your levels would drop and when they get low enough or when your symptoms return you can get tested for what B12 levels are and then return to injecting and see if your problems go away again.

It’s a difficult decision to make.

Oral B12 supplementation is the slower route to get your levels high and you would have to take B12 5000 strength to get your levels high, so injections are best.

Most people are fine with 1 injection per month after 6 loading doses in 2 weeks but some have to take more regular.(like every 2 weeks is fine for me as symptoms start returning in 3rd week).

So decision lies on u, if u feel u can wait then do it. If not take the injections together with 400ug Folic Acid, Vit D (dosage on docs recommendation), Iron (also on docs recommendedation) as too much Iron is no good. That would do the job.

In the meantime keep a good well balanced diet whatever you decide.

B12 injections is just 1 shot per month after loading doses.....sometimes for life.

It’s nothing major and easy to self inject.....but final decision is yours.

Your vertigo most likely could be from low B12 or u may require tablets for Vertigo if it doesn’t go with B12.

(B12 injections are a life saver, it does so much good for you and u can carry on with a normal life)

I felt very ill with low B12

Hope this helps....good luck with whatever u decide.

Wish u well.

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Hi Ryaan and thank you for your post. It sounds like you understand my dilemma! I feel like I've waited this long to try and get an accurate diagnosis that I'm not going to stop short of the finish line and start b12 until I know for sure I don't have an absorption issue. The responses I have gotten here have helped so much! It's a hard path to try to figure out. My husband suggested today that I take b12 ( in whatever form) and see if it makes me feel better. If so, know that it works and just keep going from there. If I don't feel better, then let it slide back to a low level and insist my Dr re-evaluate me further for an issue. That sounds tempting as I'm tired of feeling crappy, but am thinking I should stay the course and get the gastrin test done. If it's "normal" then just go for it and start injections/ sublinguals and hope they make a difference.

I don't think my folic acid is low, so would taking a folate supplement cause an issue? If my folic acid is sufficient would taking a supplement with my b12 be necessary or possibly cause me to have too much folic acid and mess up the b12 absorption? I know I have read where b12, iron and folic acid all need to be in range and in sync for proper absorption. I know my iron and b12 are on the low side but my folic acid was normal ( 19.5 with range being 5.9- 25.3).

Thank you for your response. I really appreciate it.

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I don’t think you’ll need Folic Acid with oral supplements but if you inject you normally do take daily recommended dosage of Folic Acid which is 400ug. You would have to ask a doctor if you need to take this if you inject.

Taking oral supplement you won’t need to take Folic Acid as it’s in good range. Best to take doctors advice on Folic Acid....but I knw for sure if u inject u normally do need to take it.

I don’t think Folic Acid will do any harm but you have to be careful with how much Iron u take and not overdo it as u have some bad side effects.

You can take oral sublingual B12 5000 strength to see what effect it has but oral or injection intake of B12 means it would skew your blood results and show up as high so doc will say everything is fine... your levels are good when everything is actually not fine.

So like I said u have to decide whether to take B12 or not.

Hope this helps.

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I very much understand your dilemma....that’s y I said injecting(although sounds complicated) is pretty much straight forward, easy and cheap and would get your levels up the quickest and after after having 6 loading doses and further 1 injection per week for about 12 to 16 weeks would be enough to get rid of all your symptoms and if you then stopped it would have no negative effects as u can’t overdose on injections because they’re water soluble and body gets rid of excess through urine.

You could then stop and wait until your levels drop (which would take a few months) and see if your symptoms return or whether your able to maintain levels with a good diet with plenty B12.

Tablets are slower at getting your levels high but it just means you’ll have to take them for longer to get the same effects and if u do have absorption problems it will take much longer for your symptoms to go.

Hope all this makes sense.

So your options are:

1-Take oral B12

2-Take injections or

3-Take neither and go through with all possible tests and then decide what to take.

Good luck whatever u decide to do.

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Speaking with my Thyroid UK hat on I would say your TSH is too high - it is around 2/2.5 in a healthy person. Also your FT3 is too low in the range. This is the active thyroid hormone needed in every cell of your body - so when low things begin to go wrong. The FT4 reading is not easy for me to interpret as it is an unfamiliar range - but it looks low. TSH is highest early in the morning and needs to be a fasting test to get a result for diagnosis .... TSH lowers after eating.

The body has to convert the T4 produced by the body into T3 and in order for this to happen you need Ferritin higher at around 70/80 and also optimal levels of VitD - Folate and B12. Yours are all low. So improving your nutrients could well improve your thyroid results - but will of course take time. The T4 is a storage hormone.

I have read that Homocysteine is better lower, into single figures and that 5/6 is ideal. Sorry do not have links to hand but the information should be out there :-)

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Thank you, Marz.

i agree, my numbers aren't great. I went in on my own to get a more complete picture of my thyroid health, as I felt my GP didn't order a comprehensive enough test. I know thyroid issues can cause all sorts of health issues. Hopefully I can get it in better place when I get control of some of my low vitamins and minerals. It's all very overwhelming. I sure wish I had an endocrinologist in the family!

My ferritin has only increased from 20.0 to 21.7 in 2 1/2 months, so I've got to figure out a way to get it higher, faster. This is the one area my GP and I agree on and while he didn't actually agree that my level needed to be at least 70 ( this is the level I told him I'd like it to be ) he did agree that it still needed " tweaking" at 21.7 and has kept me on iron supplements.

Good info on the homocysteine. I'd like to see that number come down as well.

Thank you for taking the time to respond to me. I appreciate your opinions and advice. It is wonderful to be able to come here and get support from people who are so knowledgeable and understand the difficultly trying to get things where they need to be.

All my best.

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There are many types of iron supps - maybe you need one that is better absorbed. Good info on the Thyroid UK Forum from helvella

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Sorry was not able to continue - also taking VitC with each iron dose can help absorption.

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Yes, I think I need to try a different one and also take them more often. I need to find one that doesn't make me nauseous and increase my dosage as much as I can tolerate. I will go look at helvella's info on the Thyroid UK board. Thank you for the suggestion. You've been very helpful.

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healthunlocked.com/thyroidu...

Found this using the Search Box - hope it is useful :-)

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Hi,

As you're in US then thought this link might be of use.

B12 Awareness website

b12awareness.org/

Book ""Could it Be B12; An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about B12 deficiency with lots of case studies.

UK B12 websites

PAS (Pernicious Anaemia Society) website

Based in UK but has members from around the world.

pernicious-anaemia-society....

PAS tel no +44 (0)1656 769 717

B12 Deficiency Info

b12deficiency.info/

Other B12 books I found useful

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Martyn Hooper is the chair of PAS (Pernicious Anaemia Society). Book is up to date with UK B12 guidelines.

"Living with Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper

Has several case studies.

"Vitamin B-12 200 pg/mL (180-914)"

I was highly symptomatic for B12 deficiency for years with in range B12 results.

Are you symptomatic for B12 deficiency?

pernicious-anaemia-society.... See Checklist PDF on right of page.

b12deficiency.info/signs-an...

Risk Factors for PA and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

b12deficiency.info/who-is-a...

More b12 info in pinned posts on this forum. Some info may be UK specific.

I am not medically trained.

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Thank you, Sleepybunny. I will look at all the sites posted. What a great source of information! I have be planning to read, " Could it be B12; an Epidimic of Misdiagnosis" it sounds like it is a very informative and comprehensive read.

I appreciate your post and all the valuable sites you've listed.

Have a great day!

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