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should i be considered for hyperthyroid

Hi i had comprehensive private blood tests about 2 weeks ago, i took them to my doctor and he retested me for all of them to check, i think they suggest hyperthyroid, possible malabsorption, possible auto immune, any thoughts/

Vit D = 26 ( second test 24 ), Normal range = 75 to 200
Vit Folate = 3.8 (second test 3.4), private normal range 4.6 - 18.7 ( NHS normal range 3 - 20)
Vit B12 = 285, ( second test 241) private Norm range = 191- 946 ( NHS norm range 140-600)
Creatinine level of 114 ( second test 101), abnormal is above 110
Whit blood cell = 4.3, ( second test 4.7)  Norm range 4 - 11
RBC = 11.9 , NHS Normal range 11.6 -14.6
Fasting glucose 5, Norm is above 6.2

TSH = 2 , ( second test 0.8) NHS normal range 0.35 - 5
Free t4 =  25.2 , Norm range 12-22
I wasnt tested for free t4 the second time, i was tested for Total t4 instead which was 19.9 , norm range 10-19

Im losing weight, my food goes straight through me, i have all the hyper symptoms except bulging eyes and goiter.

I believe i have suffered with a vit D problem for years, as i have bad knees, i have never been to the doctors about them until recently, but i believe the vit D has given me arthritis in my knees, im seeing a specialist in a month about my knees.

But i also believe if you have a Vit D problem for a while it can cause you to develop a thyroid problem? malabsorption problem? or auto immune prob? My family has a long list of auto immune probs

Anyway , my doctor is starting me on Vit D tablets today for 2 months and then i go on a lower dose for 1 month. He said i shouldnt worry about the low vit B12 or folate, even though i believe the folate is very low and as i was misdiagnosed with a nurological disorder for 10 years and im still having problems with my speech i thought my b12 could do with being a lot higher.

He said to take the vit D for 3 months and then come back to retest to see what my Vit D, b12, and folate levels were, He also said the thyroid can be affected by stress and as my body was low in vit D it would be good to retest thyroid again in 3 months after the Vit D kicks in.

I dont know if im just been given the brush off, im happy to just take vit D for 3 months and then go back for tests, but what i wanted to know was should i be taking b12 or folate as well, or be asking to see an endo? thyroid probs do run in the family, but its hypo not hyper

Thanks for any help
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1756321 tn?1547095325
I has vitamin D resistance due to severe magnesium deficiency. And the high doses of vitamin D worsened my magnesium deficiency.  My potassium levels dropped down in the range due to magnesium deficiency. I'm not sure how low my potassium levels dropped down to in the end but one of my potassium levels showed 3.8.

I was able to raise my vitamin D levels after I corrected my magnesium (the most important co factor for absorption) but I've only reached as high as 75 nmol/L.

I cannot take magnesium supplements daily and I found that out the hard way when I developed subacute kidney failure (kidney damage from insulin resistance) so I can only take magnesium now and then.

Causes of decreased WBC include hepatitis, hyperparathyroidism, adrenal dysfunction, rheumatoid arthritis, early stages of influenza, vitamin and mineral deficiencies.

Not sure about your GFR. Some labs list a normal GFR above 60.  Have you had a urine protein test done?
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Avatar universal
Hi,

i just got my results back from rtology, it was polyarthralgia they tested for, apparently clear.

I think i have narrowed it down to a couple of things i should be concerned about now.

My current tsh reading was 0.7, my other readings were, august 1, jan 2, feb 0.8, now march 0.7,
combined with my high free t4s i think this shows a thyroid problem or an endocrine problem related.

I had expected my reading to improve with taking the vit d for a few months , not get worse.

My GFR is now 71, it was 83 in august and then 77 in feb , now 71, i find this a concern as its supposed to be over 90 and its dropping.

the last thing is my WBC, they are now 4.1 which is low border, they were 4.7 last reading,

Again with taking vit d i thought they would improve.

My nasal pressure seems to have improved some with eating bananas and taking potassium suppliments, it seems to get worse when i take the b12 5000 lozangers, so maybe i should get a lower dose!

Im supposed to go on a lower dose of vit D now for a month then go back to my dr, so i suppose i will ask to be rested for the above again and also request free t4, ft3, and antibodies too

My vid d is up from 26 to 46 in about 6 weeks of taking the pills, still some way off the 75 of the low normal range though!

The hospital also didnt like it that i asked for my results either!

wish things were easy!

Hope your ok
Helpful - 0
1756321 tn?1547095325
That's disappointing.  My rheumatologist was one the best doctor I've seen. He also ordered homocysteine as well just to check if my sublingual B12 was doing the job!  

The green colour in urine is due to excess riboflavin (vitamin B2).  The P stands for polyuria maybe?  The RDA for potassium is 4700 mg with no UTL set.  I've read even a moderate reduction in potassium levels can result in salt sensitivity and hypertension.

Supplements to help with crepitus (joints that crunch, pop, crack) include vitamin D, magnesium, calcium, glucosamine with chondroitin sulfate, omega 3.  I was reading another comment that a teaspoon of sea salt a day made a big difference with crepitus although calcium and magnesium helped as well.  

You lose sugar and salts as well as water when you are dehydrated. A sports drink hydrates quicker than water as the salt in the sports drink is the first thing to cross through the gut into the rest of your body and water follows the salt! It takes longer for the water to get through on its own.
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Avatar universal
Also forgot , the food i was talikng about that affects me is gammon goint, and pork chops, i dont put any salt on any of my food
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Avatar universal
i also noticed yesterday that my mouth seemed to get really dry, like cotton mouth, its the same this morn, even though i drank 2.5 litres yest, im wondering if i should get some potassium suppliments, there is some 200mg ones on amazon,  ive read the rda is 4000mg? so i dont know how much i should be taking, i have started having 1 banana a day but dont think thats anywhere near enough.

I did just read this morning that low potasium can make your salt snsitive? ive always noticed if i eat salty food it really affects my tongue, and dehydration.

it could also be a reason for my fatigue?

my potassium was 3.7 aug and 3.9 jan, so they were on the low side plus if im taking 4000 b12 tablet it uses a lot of potassium to convert it doesnt it?

thanks
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Avatar universal
Hi, i went to r'tology yest,

It felt like a waste of time, he said theres no sign of anemia, or pernicious anemia as my intrinsic factor was fine and things like my mcv,, mch, mchc were fine, i thought they were high or border high, but apparently normal!

I was also told my b12 was normal even though i stated i have symptoms and people can have damage under 500.

i was basically told all my problems are because im anxious and sometimes have disturbed sleep, this is causing me dehydration and getting fatigued if i do anything physical even if its just for a couple of mins! and im to google something called mindfullness and to do that!

I aked about my knees, and the fact if i crouch down and go to stand my knees give a loud crunching noise and if i do it 3 or 4 times my knees flair up and it can be days before i can walk on them! he said this was a muscle problem and i need to strengthen my muscles! what?
something is wrong in my knee joint , how can strengthening the muscles help that?
he said the thing is with someone your age a scan is going to show wear or tear so we wont bother, but i can offer you physio for them. my age? do most people in their early 30's have problems standing up from the floor? do they all have to pull themselves up with their arms becuase their knees give way?

I was then told, i would have my vit d retested, celiacs test, thyroid test and test for something that can cause you to be dehydrated ( which he said he thought i didnt have ) this began with a P but cant remember the name!

i asked him if i was being tested for tsh and ft4, he said no just tsh, i said but ive had abnormal ft4's, he said thats fine, if ft4 or ft3 are high its ok if tsh is fine! really?! i thought it meant something else is taking up the strain and it can just be a matter of time befiore something fails, but hey what do i know.

It seems like the nhs will only give help if you have glairingley obvious lab results or limbs are falling off. Im so frustrated

anyway, i started on some vit b complex tablets yest which ive had for a while but didnt want to take until i had all my blood tests, i think they are 4000 b12, im going to take them until i get my 5000 methly lozengers delivered.

i will have to wait and see if they help, then begin bugging my doc again about my thyroid when i go for my review in a month as aparently im supposed to be retested for everything then as that will be 2 months on the vit D.

is it normal for the vit b12 pills to turn your pee green.

Hope alls well with you!
Helpful - 0
1756321 tn?1547095325
My kidneys couldn't handle the magnesium due to the damage done by high glucose levels (too much refined sugar in my diet!) although my fasting glucose was always in normal range.

Elevated serum albumin is seen with dehydration.  Low globulin suggests a kidney or liver disorder or issues with malabsorption or malnutrition.

From the vitamin B12 deficiency website (and a few typos I'd like to correct! lol).

"What are the causes?

There are many causes for B12 deficiency. Autoimmune pernicious anaemia is just one. However having one autoimmune condition can unfortunately predispose some to develop others. For example many people who are coeliac or have thyroid dysfunction are also B12 deficient. Many common drugs can cause B12 deficiency as can some surgery and parasites, please see below.

• Decreased stomach acid
• Atrophic gastritis
• Autoimmune pernicious anaemia
• Helicobacter pylori
• Gastrectomy, partial or complete
• Gastric bypass surgery (weight loss)
• Intestinal resection
• Partial or complete ileectomy
• Gastrointestinal neoplasms
• Malnutrition
• Eating disorders  - anorexia - bulimia
• Inadequate diet
• Vegetarianism / veganism
• Malabsorption syndromes
• Alcoholism
• Crohn’s disease
• Coeliac disease (gluten enteropathy)
• Dipphyllobothrium infection
• blind loop syndrome
• diverticulosis
• inflammatory bowel disease
• small bowel overgrowth
• tropical sprue
• gastric irradiation
• ileal irradiation (bladder,cervix, uterus,prostate)
• Inborn errors of B12 metabolism
• Transcobalamin II deficiency
• Pancreatic exocrine insufficiency & Chronic pancreatitis
• Imerslund Gräesbeck syndrome
• Zollinger - Ellison Syndrome
• Bacterial overgrowth (small bowel)
• Fish tapeworm
• Advanced liver disease

Drug induced causes
• Antacids
• Colchicine (treatment of gout)
• H2 Blockers (Zantac, Tagamet, Pepcid)
• Metformin - Diabetes drug (Glucophage)
• PPI's - Proton pump inhibitors (Omeprazole, Nexium, Prevacid, Protonix)
• Nitrous oxide anaesthesia
• Nitrous oxide recreational abuse (Laughing gas / Whippets / Hippy crack)
• Mycifradin sulphate (Neomycin) antibiotic
• Para aminosalicylates  antibiotic
• Phenytoin (Dilantin) - anti-epileptic
• Potassium chloride (K-Dur)
• Cholestyramine (Questran)
• Chemotherapy and radiation treatment

Increased demands
• Chronic Hemoltic anaemia
• Hyperthroidism
• Multiple myeloma
• Myelopproliferative disorders
• Neoplasms
• Pregnancy"
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Avatar universal
Hi, ive just double checked

my bicarbonate was only done in aug, it was 29, ref range (23-29) so high
my potassium Aug = 3.7, Jan 4.1, Feb 3.9 ( range 3.7-5.3) low end
chloride only done feb = 105 (range 95-108) high end
creatin Aug 92, Jan 114, Feb 97 (range 60-110) confused
GFR below 83, 77.

LIVER
total protein, = 71,   74,   , 71  ( range 60-80) ok?
Albumin = aug 46, Jan 50.4, Feb 46 (range 35-50) high end?
globulin = aug 25, Jan 24, Feb 25 ( range 25- 350 )low
TOTAL BILIRUBIN = Aug 14, Jan 11, Feb 19, ( range 2-21) higher end?

Apparently my intrinsic factor came back normal.

Thats something new, you dont think of people being able to be too acidic! but obviously they can! does being insulin resistant cause kidney problems, or is it only if you take suppliments that then damage them? i have a friend who thinks she is as she cant eat carbs, if she does she balloons even on very low caleries. she hasnt been tested.

will take a look at the you tube vid.

your lucky, its been frosty here, and wet wet wet!
Helpful - 0
1756321 tn?1547095325
Your potassium levels are in low normal range.  You could try potassium supplements if available (no OTC potassium supplements in Australia) although if you have kidney problems you have to be careful with magnesium and potassium supplements.

My kidneys are not up to scratch (likely due to damage from chronic insulin resistance) and taking magnesium supplements to correct my magnesium deficiency caused subacute kidney failure/metabolic acidosis. The only kidney lab that showed up abnormal for as far back as I have access to has been below the range or sometimes borderline bicarbonate levels.  I've never suffered a single fungal infection in my life and now I know why. I'm too acidic!

I haven't had a B12 injection in 5 years. I had a reaction after four B12 injections in 4 weeks - shortness of breath for three days and an acne rash covering my face, chest and belly which took 4 months to go away. Btw, a video worth checking out on youtube: "Diagnosing and Treating Vitamin B12 Deficiency."  

It's great weather here. A nice 27.3 C at 11:30 pm. :)
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Avatar universal
I can assure you my words dont get spelt properly! the whole screen is just red LOL!

i think im having mental melt down! oh if only i had good b12 to combat this!   :-)  when i went to sleep last night i could see blood test figures floating around!

I dont think any of my problems caused the dysphonic vocal tension, that was caused by chest infections and colds, i had all the time from the age of 16-22, then it didnt help being injected with poison for the dystonia in my throat from from 22 to 30, so all in all i havent spoke the right right way for 16 years, so now its about retraining my speech which might not happen after such a long time,
but i was wondering if i had a physical problem that might be making the progress of my vocal tension harder, like causing me to get dehydrated, or my muscles tiering quicker, or me running out of breath,or something causing me anxiety and not being able to control it, something along those lines, it doesnt indirectly affect it, thats fine as it still has to make me feel better on whole as i dont have any energy!

on wikipedi i read this about GFR

However, blood urea nitrogen (BUN) and creatinine will not be raised above the normal range until 60% of total kidney function is lost. Hence, the more accurate Glomerular filtration rate or its approximation of the creatinine clearance is measured whenever renal disease is suspected or careful dosing of nephrotoxic drugs is required.

which i found interesting as my dr said although my GFR was below range and had dropped, that was fine as the other readings seemed ok, which takes me back to my other point Drs want to wait till things are fully blown and then it could be too late as damage could be done!

Saw my ENT specialist yest, and they agreed for me to talk through my bloods with Rtology and that they should do tests and tell me if i have any auto immune probs
I also got to see my larynx and what im doing wrong when speaking, apparently im using my false muscles and squeezing my vocal cords and stangling my voice, interesting to see, doesnt help in actually trying to stop it though!
Spent hours yest documenting all my blood results onto one document, i now how to do the same with all the info ive found which i think is relative, what fun!

My potassium reading was 3.7, should that be higher? especially if i begin b12?

Do you still get b12 injections as well as using the spray?

I read that the injections cost 60p here if the dr does them and they dont know why the doctors dont offer them more with it being so cheap! if you go private its £40 a jab!

hope you have a nice day, its prolly warmer there than here!?
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1756321 tn?1547095325
Medhelp has red wavy lines under plenty of words that are spelt correctly.  The red wavy line is under the word Medhelp LOL.

There seems to be conflicting info with MCHC. I've read high MCHC with macrocytosis but many other websites state normal MCHC with macrocytosis.

This is from Patient UK's article: Full Blood Count...

"Mean cell volume (MCV) - guideline normal values: 77-95 fL. This is a good starting point for the evaluation of anaemia and usefully classifies anaemia into macrocytic and microcytic anaemias.

Mean cell haemoglobin (MCH) - guideline normal values: 27.0-32.0 pg. High values are found in macrocytosis and low values are seen in iron deficiency.

Mean cell haemoglobin concentration (MCHC) - guideline normal values: 32.0-36.0 g/dL. This is of particular use in the evaluation of microcytic anaemias. High values are seen in severe or prolonged dehydration, hereditary spherocytosis and cold agglutinin disease. MCHC is low in iron deficiency anaemia and thalassaemia."

Mayo Clinic states this in regards to vitamin B12 and potassium...

"Use cautiously in people with low serum levels of potassium, as the correction of megaloblastic anemia with vitamin B12 may result in fatally low potassium levels."

Muscle tension dysphonia (MTD) is a voice disorder that is not due to a structural or neurological problem. MTD is diagnosis of exclusion (all other possible conditions ruled out first). Causes of MTD include upper respiratory infection (cold, flu, laryngitis etc), second hand smoke, Gastroesophageal reflux disease (GERD), Laryngopharyngeal reflux (LPR), significant vocal demands, stressful life events.

Stage 2 of kidney disease is between 60 - 89 but there is also evidence of kidney damage as well.  You might want to talk to your rheumatologist about your lab work and see what he/she says.

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Avatar universal
I wouldnt worry about making mistakes! My spelling is awful!!! i usually use a spell check and although this tells me i spell words wrong, it doesnt seem to tell me how to spell them! unless im doing something wrong.Not to mention when ive written so much i dont have the will to go back and proof read it! :-)

Im beginning to get really confused now! I didnt think mild iron deficiency sounded right as the iron reading its self was good and ferritin was good too.

So if im understanding what you are saying then my Lower-than-normal TIBC could mean:- Cirrhosis, Hemolytic anemia, Hypoproteinemia, Inflammation, Liver disease, Malnutrition,Pernicious anemia . Sickle cell anemia"

And  macrocytic anemia you have abnormal, MCH, MCHC,MCV, do you have to just have 1,2 or 3 at the same time and do they have to be abnormal high, low, or either?
i had tests in Aug, Jan, Feb
MCH = 30pg (norm) 32.1pg (high) 32.4 pg(high)
MCHC = 31.9 gd/L (low) 356 g/L (high) 34.9 (high)
MCV = 94fl ( norm?), 90 fl ( norm), 93fl (norm ), (range 82-99)

The Doctor said coz my WBC is in Norm range, RBC is norm range, Iron and ferritin in Norm range then there cant be any problem!

My GFR was 83 Aug ( low), 77 Feb (low) (range should be above 90)
Dont know if that means anything

I really need to sit down and write all my results down on here in order when they were done, as because i had them done aug, jan, and feb and the results came in dribs and drabs, i have about 20 pieces of paper and its hard to reference them!

I dont know where to start in getting to the bottom of things! Im taking the vit D, i need to begin taking some b12 and folate, i need to try get tested for the other b12 antibodies and then after a few months retest everything?
to see if theres still abnormalities with the MCH, MCHC, MCV,TIBC and UIBC,
see what my RBC and WBC are (FBC)
Retest TSH Freet4 and try get antibodies test
and of course see what my B12 and D are doing with taking pills

If i wanted to talk to someone about these results who would i ask for?
I was told i could talk to my ruematologist about auto immune problems when i go for him to check my knees at the end of the month

Im seeing my ENT specialist in the morning then my speech therapist, Thats going to be fun as my speech theripist has said my disphonic tension is just from anxiety and no physical problems, and i dont believe it, as i have it when im not anxious! and i get so dehydrated, or feel dehydrated and have no energy when speaking! I doubt they will want to listen when i try to tell them i think its something to do with my blood test results, no one ever seems to listen

one last thing before i go, i read that if you take high b12 you should take potassium? as you need it for when the body begins to heal with having the extra b12?

Thats enough for now, i do appriciate your help!, theres no rush in replying.
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1756321 tn?1547095325
I need an edit button lol. This is what I should have written: Elevated urinary methylmalonic acid, elevated homocysteine and/or low holotranscobalamin are other markers of vitamin B12 deficiency.

I cannot buy methylcobalamin spray here in Australia either. I use Bioceuticals B12 sublingual spray which is the cyanocobalamin form of B12. I have no problems converting cyanocobalamin into methylcobalamin.

The cyanocobalamin form is not recommended if you are a smoker as the conversion of cyanocobalamin into methylcobalamin is impaired due to toxins and heavy metals that build up in the liver.

Your labs do not show mild iron deficiency. The classic iron deficiency pattern is low iron and ferritin while TIBC and UIBC levels are high. Serum iron + UIBC = TIBC.

Excerpt from Medline Plus: Total iron binding capacity...

"Lower-than-normal TIBC may mean:

Cirrhosis
Hemolytic anemia
Hypoproteinemia
Inflammation
Liver disease
Malnutrition
Pernicious anemia
Sickle cell anemia"

Labs that are elevated with macrocytic (enlarged blood cells) anaemia are MCH, MCHC, MCV. Folate and vitamin B12 deficiency also are two reasons for a low WBC and RBC. In my case, all labs on my complete blood count were within normal range.


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Avatar universal
Thanks, your helping me understand far better than just googling!

I never knew you could have masked anemia! My doctor says if red blood cells are ok then no anemia, but like you when your misdaignosed for such a long time with something, you shouldnt listen to everything that docs say!

It seems like the uk arent very good for medical supplies, i was looking for the spray you said, i read the best suppliment type to get is methylcobalamin, it said it doesnt need to be broken down or converted, but the uk doesnt sell it! theres only one place but its only a 500mcg spray, theres some 5,000 mcg methylcobalamin lozengers from USA, which i might order to see what they do.

I was looking back over my blood test results and noticed a few things with my iron and red blood cells, does any of this make sense to you? on my report it said it may show mild iron deficiency and talk about it to my doctor, but when i showed her the results she didnt say anything about it.

UIBC = 21.0 umol/L ( norm range 20-62)
Iron = 20 umol/L ( norm range 9 - 32)
Total iron binding capacity = 41 umol/L (LOW) , (norm range 45-70)
Transferrin saturation = 48.8% ( norm range 20-50)
Ferritin = 214.1 ug/L ( norm range 28-365)
So UIBC is just about low abnormal,  TIBC is below, Transferrin is just about high abnormal. I dont eat much iron in my diet but i think these results show i have a lot of iron?

RBC = 5.22 Aug ,5.12 in Jan, 4.96 Feb ( norm range 4.5-5.5)
RBC distribution width 11.6 in August, 11.9 in Feb ( norm range 11.6-14.6)
WBC= 4.1 in Aug, 4.7 in Feb ( norm range 4-11)
Mean cell haemoglobin level pg = 30 in Aug, 32,4 in Feb ( abnormal high in Feb)
Mean cell haemoglobin concentration g/dL = 31.9 in Aug ( abnormal low in Aug), 34.9 in Feb

must go to sleep! thanks for your hep :-)
Helpful - 0
1756321 tn?1547095325
I developed vitamin D deficiency from my other problems such as magnesium deficiency and hypothyroidism.  I think I had my antibody tests back within the week.

A healthy person's liver can store up to a 5 year supply of vitamin B12.  The small intestine is able to recycle B12 by reabsorbing it from bile made by the liver.

My sister also has autoimmune pernicious anaemia as well. 20% of relatives with pernicious anaemia have pernicious anaemia especially first degree female relatives.

I had masked megaloblastic anaemia so my blood count was normal. What masked my anaemia is another question. Anything from high folate diet to any of my other medical conditions.

We have free health care here. The methylmalonic acid test is not available in Australia which surprised me.  Elevated urinary methylmalonic acid, homocysteine and/or holotranscobalamin are other markers of vitamin B12 deficiency.

A book that you might be interested in reading: Could It Be B12?: An Epidemic of Misdiagnoses by Sally M. Pacholok and Jeffrey J. Stuart.
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Avatar universal
Hello again.

You sound very similar to me. with your Vit D prob, B12 being low but in so called Norm range and suspecting pernicious anemia, and having a Thyroid problem.

Do you think you developed a Vit D problem and it caused the other problems? Although you said you were showing b12 probs from 18 months.
I read if you have pernicious anemia in the family then you have a 1/3 chance of getting it, i then think you said if you have it then theres a 50% chance you have autoimmune thyroid ( which i think i also read)

How do you get Doctors to treat you for b12 if they will only go off the ranges? do you get free medical help in OZ or is it like the USA set up, Here in the UK it can be quite hard t get doctors to listen to you , which only leaves the option of going private, which is expensive and i cant really afford

How long did it take for your intrinsic factor results? mine still arent ready after a 2 and a half weeks

Also , do you know anything about urinary methylmalonic acid (MMA), homocysteine and/or holotranscobalamin

Are they things i should be tested for as well as parietal cell antibodies?

Also if your red blood cells arent out of the norm range will a doctor diagnose you with onset anemia?
It baffles me to why doctors dont wont to try and catch a problem in time before it becomes fully blown and causes more problems, they wont listen till its fully developed , but then it can be to late and already caused so much damage.

I dont really know much about b12, what do you mean when you say you recycled your b12 for years, if you have pernicious anemia do you just keep using what you have till it dissappears?

Hope you have a nice weekend
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1756321 tn?1547095325
Write all you want. :)  Yes ng/L is the same as pg/L.  I've also had severe vitamin D deficiency. Your doctor is 50 shades of wrong LOL.

I've had B12 deficiency symptoms since I was little; my mother says she noticed symptoms at 18 months. I was recycling the same B12 for decades but this didn't prevent the mental and physical symptoms.  I suspected pernicious anaemia at age 33 and pushed for the diagnosis at age 35.  I have permanent nerve damage but that damage started showing up decades before I started B12.

It doesn't take that long to raise B12 levels to good range. Two or three months I think from memory. I have been using sublingual B12 spray daily for years. Currently taking 2000mcg daily. To me it's like water. Symptoms show up quickly if I stop taking my B12!  

I was told by my specialist and doctor the only treatment for pernicious anaemia was B12 injections. After decades of misdiagnosis, my trust in doctor is very low so I trialed sublingual B12 and the rest is history.

You need to boost B12 ASAP. The longer you leave it the more damage you are doing. I listened to my doctor and that last three years caused more permanent nerve damage plus my mental and physical health deteriorated even further.
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Avatar universal
Thats a great help,. thanks

ive just checked my
results again, to make sure im quoting th3e right figures.

my first b12 was done at a private hospital and was 285 pg/ml (191-946)
Folate3.8 ng/ml ( 4.6-18.7) stated deficient + recomended i supliment

I went to my doctor with the results and he retested on the NHs
2 weeks after the first test i tested
B12 248 ng/l (140- 600) is ng/l the same as pg/ml?
Folate 3.4 ( 3-20)

My NHS doctor seems to know nothing about b12 or folate, i said its dropped 40 in 2 weeks and she said not thats because its different labs, so i said ok, its 248 thats low isnt it, she screwed her face and said its in the low range but fine.she then said the folate was fine too

My Red blood cell count was 5.22 in aug, then 5.12 in jan, then 4.96 in feb ( 4.5-5.5? )
red blood distribution width 11.6 aug, 11.9 feb ( 11.6- 14.6)

packed volume whatever that means, 0.49 aug, 0.46 feb

All my doctor says is My Sever Vit D level is affecting everything and when ive had the pills all my levels will go up, but i dont believe it , i think ive had vit D for years and its done damage. I think i could have B12 problem like pernicious anaemia especially as it runs in the family and possibly a thyroid problem with my suggestive readings.

For a start i believe my b12 reading are way low and unless you have an injection they take ages to rise dont they? ive read you should really be 400 or above to feel good, yet at 248 how do you get doctors to treat it if they will only go on their reference ranges!

I will be ringing up today for my intrinsic factor results for the 4th time, its now been two and half weeks since it was supposedly done, I get the feeling they havent done it as no one will tell me how long it takes to get the result!

After hearing that you had a reading of 328 when you firsth thought you had the pernicious anaemia, i am worried because of my reading and that they wont retest me for 3 months, im worried that it can cause damage that wont repair. Im also wondering if the b1 could be the reason my nose is always flaired up and my dehydration feeling.

just came across this website http://www.b12deficiency.info/signs-and-symptoms.html
i have so many of the symptoms but the one which stood out for me was

Premature greying, sides of hair were grey by age of 29
Glossitis - swollen / sore tongue, geographic tongue
light headedness
Osteoporosis, suspected in knees
Symptoms mimicking Parkinsons and MS (misdiagnosed for 10 years )
Nominal aphasia - difficulty recalling names or words
Loss of appetite/weight loss
Epigastric pain (poor digestion, bloated feeling after eating small or
   normal sized meals)
Chronic fatigue
Pallor / jaundice
Breathlessness
Generalised weakness, fatigue
Anxiety
Paranoia
Irritability
Depression
Disturbance in taste and smell
Forgetfulness, memory loss
Visual disturbances / decreased-blurred vision / damaged of optic nerve
Restless legs
Dizziness
Urinate alot
Ataxia (Neurological disorder affecting balance, coordination and speech)???

The 2 which stood out for me were, Parkinson like symptoms and  Ataxia (Neurological disorder affecting balance, coordination and speech)???

I was misdiagnosed with a neurological speech disorder for 10 years which is from the parkinsons family of disorders, i was injected with poison in my throat muscles every 3 months for 10 years. I then asked for a 2nd opinion and was told i didnt have it, i now have vocal  disphonic muscle tension.

It doesnt get better with the exercises i have been given, i drink 2 litres of water a day and 3 steam inhalations yet my throat still seems to tighten up, the muscles tighten and it gets dry and my voice doesnt improve. I wonder if it could be down to the b12 levels? as im being told by my doctor all the symptoms i have is to do with Vit D!

sorry for writing so much!
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1756321 tn?1547095325
I forgot to say I had my first B12 injection after that first result and felt the difference in 4 hours. Then I had two more B12 shots in the next two weeks after that.
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1756321 tn?1547095325
When I first suspected autoimmune pernicious anaemia, my B12 lab result was 445 ng/L (220 - 1100). The conversion into SI units - 328.4 pmol/L. I had another two B12 injections and during one of those injections I asked the doctor if I had pernicious anaemia and she said no.  

One year later my B12 was 245 pmol/L (162 - 811) and 1 year 9 months after that my B12 was 122 pmol/L. I think my labs for pernicious anaemia antibodies were done pretty quickly. I live in Australia just to add.

My folate was still in low normal range.  As my B12 went down so did folate and when I corrected my B12 deficiency my folate rose in the range.

I have Hashimoto's thyroiditis and I've read 50% with autoimmune pernicious anaemia have positive thyroid peroxidase antibodies (TPOAb). I had to push to diagnose this autoimmune disease as well. I went to see an endocrinologist who knew more about thyroid disease than any doctor I had seen. He also tested me for celiac disease since that is more common with autoimmune thyroid disease. Thankfully I was negative. I already have 4 autoimmune diseases. Like I need another one! :)
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Avatar universal
Hi red star

Thanks so much for replying, can i ask what your b12 levels were when you thought you had a problem?

My first reading was 290 at a private lab, then my dr had it done at a NHS hospital 2 weeks later and it was 241, i thought this was low especially when my folate was below range at a private lab with a reading of 3.8 and then 2 weeks later my doctor tells me its normal at 3.4 because their range is 3-20!

I was also worried as ive been waiting for my intrinsic factor result for 2 weeks now and when i rang my dr about it she said she didnt know how long it would take to come back but theres nothing to worry about as my b12 reading is normal and it will just mean i cant absorb it! I also dont know why i havent been offered the parietal cell antibodies.
Do you know how long it can take to get the intrinsic factor bloods back?

I also felt im been given the brush off with my thyroid too as she told me that she researched into it ( which leads me to believe she knows nothing of the thyroid) and told me stress can affect the reading and we will retest tsh and free t4 in 3 months time after ive been on my vit D pills.

But like you i thought my levels shouldnt be moving so much and i thought my ft4 was high for the tsh levels i have.

But my Doctor tells me they only really go off a tsh reading when diagnosing thyroid! which i didnt think was true, as the ft4 and ft3 are the active parts of the tsh!? and i should be being tested for the antibodies too as that could be the problem, but it seems on the NHS they dont want to give the ft3's or anti bodies unless your about to die!

If i saw an endo would he tell me just the same, that my tsh is in the so called norm range or would he look at whats happening with my ft4, family history and symptoms?

Thanks again
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1756321 tn?1547095325
I have autoimmune pernicious anaemia with positive intrinsic factor and parietal cell antibodies.  I requested both antibodies when I pushed for my diagnosis.

TSH, free T4 and free T3 do fluctuate to some degree but your free T4 looks to be fluctuating too much. Your TSH is not responding to T4 levels either. My TSH was <0.05 mU/L with a free T4 25 pmol/L for instance.  You really need to have a more indepth work up to see what is causing your hyperthyroid symptoms.


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Avatar universal
Hi Red star thanks for giving me some advice. Ive just had all my lab results printed out,

My TSH in august was 1, then in Jan it was 2, then in feb it was 0.8
My free t4s was 14.9 in august, then 25.2 in jan, then 19.9 in feb.

I feel like i have a dull pain in my heart most of the time and when i do anything physical my heart seems to pump really fast and i get out of breath so easily,

Also if i get anxious or angry, my heart feels like its going to explode and i cant seem to control my anxiety levels , not to mention i struggle keeping weight!

im sure i have a hyper problem, i just dont know how to get a dr to listen to me, i should have an antibodies test but it was hard enough getting just the tsh and free t4 tested!

is my tsh and free t4s supposed to go up and down as much as ive stated? is that normal?

I started vit d tablets 3 days ago, i think im taking 10,000 ui once a day for 3 months. Im still waiting for my intrinsic factor b12, my doctor said if it comes back positive all it means is that i cant absorb b12 but thats ok as my b12 levels are normal, i said normal! surely they are low and from my reading dropping! my last reading was 241, to which i didnt get a response!

I believe my b12's are far to low and its very funny my folate is 3.4 which is very low too!, to me it screams out that iv had a vit d problem for a long time and who knows what damage its done, its given me such bad knees, i believe its messing with my thyroid or a gland thats messing with my thyroid, it could be giving me an auto immune condition, i have a close family member with pernicious anemia so with my b12 levels and folate that could be a possibility, plus i read ony 50 to 60 % of people with p anemia test positive for the intrinsic factor, and you should have a test for something else as well, some other anti body. My doctor isnt interested in listening to my symptoms or my family history, its a case of are you outside the labs ranges , if so, lets give pills to bring up levels and not actuly try and see why they might be low!

I am quite worried, my sight in my right eye has got a bit blurry over the past 6 months, i used to have perfect vision but now for distances its more blurry than the left, also when im reading and then look up t the tv it takes a while to focus where as a year ago it wasnt doing that.

My tongue is always sore especillay around the side.
under my finger nails which is supposed to be pink had been turning white, like white circles taking up the whole of the nails, like when you push down on your nail and it turns colour and 2 days before i began to take my vit D pills a couple of my finger nails had started to be quite painful in the middle of them, that seems to be lifting a little bit now!

Eight im going to go now, ive just seen how much ive written! thanks again for your advice, if you have any more on if my tsh and free t4 should be going up and down like that, that would be great, thanks
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1756321 tn?1547095325
When i'm hyperthyroid, my pulse pressure rises. Pulse pressure is normally around 40mmHg. Eg: 120/80 = 40. An example of one of my high pressure readings 161/93 = 68.

In Japan and various countries in Europe, the lower end of the B12 reference range at 400 pmol/L (550pg/mL). But to quote B12d: "Total blood serum B12 is known to be a poor indicator of B12 deficiency status, and we are investigating a test for active-B12."  I've had B12 malabsorption for decades so that statement is 100% true. Google: "B12d B12 Signs & Symptoms Assessment" to see how high you score.

Nerve damage may be permanent if B12 treatment is not started within 6 months of symptom onset.  And to add, vitamin B12 deficiency can trap folate in an unusable form and lead to folate deficiency; this is called the folate trap.
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