What type of sub specialist is best suited to treat B 12 defiency issues?

[dianewilson1900]

I don't mean a general internist. But I'm talking highly specialized trained field. I want a second opinion form a second doctor to treat me. I'm being given injections once a week and my symptoms are not improving. They are getting worse. Do I seek out a gastronologist? Endoconologist? Nutrition counseling? General medicne doctor or internal medicine is not working. They don't know what works and what doesn't. I know it sounds rude but...

[thyroidorwhat]

As you are on injections I would say a haematologist would be first choice rather than a dietitian or gastroenterologist.

How long have you been on injections?

What other blood tests have you had? Can you post the full results with ranges? It may not just be B12 causing this.

From the NHS:

"You may be referred to a specialist for further tests or treatment. This may include:

- a haematologist (specialist in treating blood conditions) – if you have vitamin B12 or folate deficiency anaemia and your GP is uncertain of the cause, you're pregnant or symptoms suggest your nervous system has been affected

- a gastroenterologist (specialist in conditions that affect the digestive system) – if your GP suspects you don't have enough vitamin B12 or folate because your digestive system isn't absorbing it properly"

Failing that, you can check out this website for practitioners who have experience in treating Pernicious Anaemia - bsem.org.uk/resources/find-...

[dianewilson1900 in reply to thyroidorwhat]

Thank you. I live in the US and had a complete blood count done at the end of March or May, I forget (thats the low B 12 talking) and everything is normal, folate and ferritin to. My hemoglobin is normal but on the low end. If it's under 12, your considered deficient. Mine is 12.4, close to the cut off point in my opinion. I have had anemia in the past. Before I started injections, my B 12 was 119.3. I have 4 injections so far,1000 mcg each, on the following dates: June 1st, June 13, July 5th and July 13th. A few weeks ago, my B 12 serum level was 1,107. I felt better about two weeks, but now my old, low B 12 symptoms have returned. The first two injections were given to me at the hospital. The last two I self injected at home. I did a lot better with the ones given at the hospital. May be they sent me a placebo? As soon as I figure out how to post my lab work online, I will do so. It could be this or next week possibly. (I need help from the library cybernavigator to do this). And I will ask my general medicine doctor for a referall to see both specialists you recommended. But why a hemotologist? What can they do? I understand the gastrologist but role would the hemotologist do? They specialize in blood diseases...what is the link between low B 12 and blood disease? Cancer? Ranges here are 180-900 normal, 145-179 Grey area and 145 or less Deficient. My B 12 before injections was 119.3

[thyroidorwhat in reply to dianewilson1900]

No I wasn't thinking about cancer. Haematologists are specialists in blood disorders which I imagine B12 issues would fall under, not saying you have a "disease" :), and the NHS guide recommends them as specialists to be referred to, they seemed like the most appropriate one out of the 3 in my non-expert opinion as you're already on injections. A gastro would be suitable to determine the cause of malabsorption from your gut but as you're already on injections I wasn't sure if they were relevant at this point. Have you had any investigations or did they just start you on injections after seeing your low levels?

I read a lot on this website that symptoms can worsen before they improve and you have only had four injections in rather quick succession, perhaps more time is needed. Hopefully things will improve for you!

[dianewilson1900 in reply to thyroidorwhat]

Thank you. I will try to get a referall for a hemotologist as well. I happen to agree with you and think this has to approached from a multifaceted angle. I hope my doctor writes me a referral. But I have another doctor with whom I will get a second opinion from. So if the first Dr. Doesnt agree, maybe the second one will. 😀😀🇬🇧🇬🇧

[Sleepybunny]

Hi,

If you have neuro symptoms, have you considered seeing a neurologist?

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

A gastro-enterologist might be able to find out if you have gastritis, inflammation of the gut, which can lead to absorption problems with nutrients.

What does your doctor think is causing your low B12?

Risk Factors for PA and B12 Deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

UK B12 websites

PAS (Pernicious Anaemia Society)

Based in Wales, UK but has members from around world.

pernicious-anaemia-society....

PAS tel no [phone] answerphone

B12 Deficiency Info website

b12deficiency.info/

USA B12 website

B12 Awareness

b12awareness.org/

B12 books I found useful

"What You Need to Know About Pernicious Anaemia and 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.

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

Very comprehensive with lots of case studies.

More B12 info in pinned posts on this forum.

I am not medically trained.

[dianewilson1900 in reply to Sleepybunny]

Thank you for your prompt reply. I live in Chicago, Illinois. A number of things is causing my B 12 deficient but the sad truth is my doctor won't test me! I want and asked him to. And he said "Does it really matter when the end result is your always going to have to take B 12 supplements or injections for the rest of your life anyway? The end result is the same". Mind you, I go to a free public hospital and understand he doesn't want to order three dozen tests worth $10,00 that would otherwise reveal the cause. I get that! Testing is expensive. But if I have aserious autoimmune condition, I need to know. If I have celiac disease and am allergic to gluten, I NEED TO KNOW SO I DONT EAT OFFENDING FOODS! 😁😁 So uncovering the cause is important to me. He said the most LIKELY cause is lack of intristic factor. I think it's either that, or celiac disease. Or possibly leaky gut or irritable bowel syndrome. I will spare you the details, but I have like every symptom in the book and these conditions are similar and overlap anyway. I also have a strong feeling I am allergic to many foods, gluten included because I have had, joint pain, fatigue, and these is just something "off". I read a lot and am starting to have an "AH-HAA" moment where I'm putting two and two together and everything is fitting together, clicking and "making sense". That "You just know" feeling. I also have Candida and beleive I have slow intenstional bacterial overgrowth issues. I probably need antibiotics. So all the stuff I mentioned is interconnected anyway...I also take Metformin and proton pump inhibitors, and have gastritis and diverticulitis on top of it. I will ask for a referall to see a gastrologist. A specialist like that is in the best position to treat me. They have like 6 years of highly specialize medical training or something. I will check out the links. Thank you. 😁😁

[tvellepern in reply to dianewilson1900]

I am sorry to hear that you are not feeling well. I also have the same symptoms and my doc wanted me to do an endoscopy and colonoscopy (which I cannot agree to do). I did start a gluten free diet and it has caused less pain in my stomach area. I felt relief from the pins and needles in my head, hands and feet and burning in my chest the second the B12 entered my arm. I am trying to get the docs to understand that due to my age I need the injections more frequently than each month because my pain returns much too quickly. My eyesight has been affected and I feel bloated and nauseous most of the time. I force myself to eat since I have lost too much weight. Would like to find a doc that would give me B12 more often and less blood testing since my veins are hurting and feel brittle.

[Gambit62 Administrator]

as sleepybunny suggests would be best to see which ever speciality fits with the symptoms that are bothering you.

Haemo unlikley to be much use at the moment as unlikely that what is going on is blood related - anaemia will have cleared and blood tests unlikely to show anything if you are on weekly injections.

However, there is absolutely no guarantee that the specialist will know any more about B12 than your GP.

If your GP is willing to learn then you could try pointing them at the area on the PAS website geared to helping medical professional improve the standards of diagnosis and treatment

pernicious-anaemia-society....

this post may also be interesting even if your GP is based on the other side of 'the pond'

healthunlocked.com/pasoc/po...

[dianewilson1900 in reply to Gambit62]

Thank you, I think based on all the symptoms I have, a gastologist could help with my symptoms of irritable bowel syndrome, gastritis, diverticulitis, malabsorption issues, high likelihood of celiac disease, etc. I will ask my doctor for a referall and ask show him the link you provided. I appreciate your advice. 😁😁💗💗

[fbirder]

It’s impossible to say.

Doctors vary. I’ve seen a GP, two gastroenterologists, two neurologists and a haematologist.

Once of the gastroenterologists recognised my symptoms and told my GP. My GP started me on treatment and was adaptable enough to change my treatment to suit me. He also referred me to a neurologist, who said my neuropathy wasn’t due to B12 (and sent me to another neurologist to confirm it).

All were excellent.

My GP also referred me to a haematologist. He, on the other hand, is an opinionated, ignorant, oaf who refuses to listen to patients. Both I, and my GP, decided to ignore him.

[Plucky1976]

I find this interesting as the only one willing to treat me was internal medicine. I’m in Ontario, Canada and it seems most physicians here are clueless when it comes to B12 treatment.

[dianewilson1900 in reply to Plucky1976]

YOU GOT THAT RIGHT! We have to find out own way. Join some pernicious anemia facebook groups. They know a LOT ABOYT B12 STUFF as far as where to buy B 12 and how to read your lab results at stuff, UK based facebook pages

[MoKayD]

Hi beginner1, Sorry this is off topic but I wanted to say Hi. I live in Maryland also, and was lucky to find a doctor who believes B12 deficiency is overlooked and underdiagnosed by many medical professionals. I can go to his office (between 9 and 11 am) and get a shot as often as I need to. He also told me that B12 shots are very inexpensive. I think he told me a shot costs him about 5 cents.

[dianewilson1900]

I appreciate your advice and will follow it. Your so right and will start mentioning that I live in the US. I'm in Chicago Illinois. My B 12 (before injections) was 119.3. Ranges at my hospital are: 180-900 Normal, 145-179 Grey area and 145 or less Deficient. I had two injections given to me at the hospital on June 1st and June 13. I seemed to do really well with those. My doctor gave me supplements after that and I had to convince him I had malabsorption issues and has to haggle and beg for him to allow me to self inject at home. I was able to convince him, and my next two injections were done by me on July 5th and July 13. I have to do one more on July 20th and July 27th. They are one week apart. After this, my injections will drop down to once a month for six months, and then its unclear what will happen after that. I belong to a pernicious anemia facebook page (UK) and they all tell me that weekly injections is too few! That I should be getting injections every other day starting out, and I agree. I have severe neurological problems, migraines, balance, hearing, vertigo and mental health issues. Everybody I talk to online and some stablished medical articles, support this claim. But your right. Many people ALSO say symptoms sometimes get worse before they get better. So I agree with you on that as well! But I also feel I'm not receiving enough injections and need to talk to my doctor. Untreated B 12 defciency can result in permanate neurological damage if it is not treated in time. I have enough issues already and they started in March. I'm running out of time...

[Jnelson123 in reply to dianewilson1900]

Hi Dianewilson1900, I also live in Chicago and can’t seem to find a doctor that will inject me more than once a month. I was at 152 on June 1 and have only received 2 injections, next one aug 6th. I have the same symptoms, burning skin, head tension, clumsiness, tingling, numbness, and never ending nausea. If you happen to come across a doctor that will listen I would greatly appreciate if you could pass him or her name along, and I will do the same for you! Good luck and feel better soon!

[dianewilson1900 in reply to Jnelson123]

Come to Stroger sister! Its a Free public teaching hospital. You will get billed, but they will always give you medical care and NEVER turn you away if you don't pay your bills. They have assistance programs to help cover your bills suited to your income level. Ask for Dr. Deepak Leekha and tell him Marianne Wilson Redman sent you. He's my Internal medicne doctor. (Diane Wilson is my screen name. I couldn't register my email as Marianne Wilson because that email adress was already taken. I'm not trying to be shady here)! Strogers number is 312-864-6000. Ask him for an Methymalonic and Homocysteine test. Those two tests measure how your body is UTILIZING B 12 in your body. A regular standard B 12 test only measures the amount of B 12 in your blood. Its basically a useless test because you can have normal levels, and still be deficient. If your body doesn't utilize it correctly, the B 12 can build up to high levels, and this build up to the point it looks like you have a healthy, sufficient amount! It's BS! But I asked DR LEEKHA for this test and he wouldn't give it to me. He said it wasn't necessary because the outcome is I will always be on injections for life probably. I'm in the process of asking for more injections now. I'm trying to get an appointment with him. Contact me if you have any questions at [e-mail]. I'm happy to help you with how going to Stroger works if you choose to go there. I can't guarantee who will give you three injections per week though...145 or less is considered deficient so your really close to the bottom. I bet he would give you supppements at least.

[dianewilson1900 in reply to Jnelson123]

What hospital do you go too?