Pernicious Anaemia Society
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Confused!. please advise next step

​ok, i'm just looking for some guidance here. Firstly some background. I am male 57yrs a bit overweight all around belly! I have been off and on antidepressants for 25yrs and in the early years they did make a difference as I believe I was depressed owing to certain things but I would say the last 15 yrs at least they haven't made any difference to my feeling of wellbeing.

I have just not felt right in myself for a very long time. I wouldn't say depressed as I know what that feels like but more just feeling totally knackered with really bad brain fog, memory seems bad and commented on by other people, lack of concentration, feel very weak, find it sometimes impossible to deal with two things at the same time and needing to sleep often twice during the day etc. . I get these symptoms even when feeling generally happy but the severity of these symptoms seem to vary from day to day.

On top of this for years I have suffered from impotence and lack of libido which has got me very down at times. I should say this was even during periods of not being on AD's. All this over time has cost me my marriage, a job and literally thousands of pounds on non working days due to the above symptoms.

Unfortunately I have one of those doctors that puts everything down to depression and hand out the pills like sweets.

Anyway having just really lost faith in my doctor and basically giving up on life I decided to take things into my own hands and get some blood test done (thyroid, testosterone and vitamins) privately and had some interesting results.

THYROID

TSH 2 mIU/L range 0.27 -- 4.20

Free T4 15.8 pmol/L range 12 -- 22

Total T4 77.6 nmol/L range 59 -- 154

Free T3 4.26 pmol/L range 3.1 -- 6.8

Thyroglobulin 9.0 IU/mL antibody range 0.0 -- 118

TOP antibodies *37.5 IU/mL range 0.0 -- 34

Vitamins

Vitamin B12 148 Pmol/L 140 --724

Folate 4.36 ug/L 2.91 ----- 50

Vitamin D * 28.7 nmol/L 50 ---- 200

Ferritin 202 ug/L 30 --- 400

CRP -

CRP High Sensitivity 1.2 mg/L 0.00 --- 5

HAEMOGLOBIN (G/L) *173 g/L 130.00 - 170.00

HCT *0.506 L/L 0.37 - 0.50

RED CELL COUNT 5.26 x10^12/L 4.40 -5.80

MCV 96 fl 80.00 -99.00

MCH 32.9 pg 26.00 -33.50

MCHC (G/L) 342 g/L 300.00 -350.00

RDW 12.4 % 11.50 - 15.00

White

Blood Cells

WHITE CELL COUNT 5.4 x10^9/L 3.00 -10.00

NEUTROPHILS 3.24 x10^9/L 2.00 -7.50

LYMPHOCYTES 1.32 x10^9/L 1.20 -3.65

MONOCYTES 0.52 x10^9/L 0.20 -1.00

EOSINOPHILS 0.27 x10^9/L 0.00 -0.40

BASOPHILS 0.05 x10^9/L 0.00 -0.10

Hormones

D.H.E.A. SULPHATE 11.410 umol/L 0.44 - 13.40

FOLLICLE STIM. HORMONE 3.55 IU/L 1.50 - 12.40

LUTEINISING HORMONE 5.97 IU/L 1.70 - 8.60

TESTOSTERONE 14.96 nmol/L 7.60 - 31.40

FREE-TESTOSTERONE(CALCULATED) ​*0.219nmol/L 0.30 - 1.00

SEX HORMONE BINDING GLOB ​54.82 nmol/L 19.00 - 83.00

FREE ANDROGEN INDEX 27.29 Ratio 24.00 - 104.00

17-

​BETA OESTRADIOL​ 72.72 ​p​mol/L 0.00 - 191.99

I am sure the results that stick out on this forum will be the Vitamins. I should say that my doctor when shown the results said that my B12 was "absolutely fine". Luckily I was prepared and so read out the NICE guidelines to him so he gave in and I have just had my 4th B12 loading injection this morning and he prescribed high dose Vitamin D pills​. I am certainly feeling a difference in energy.

From the Thyroid forum I understand I have Hashimoto's because of elevated TPO and I know that having the low free testosterone is not good as far as anything sexual goes. I have done quite a bit of research and know there is a good chance I have Pernicious Anaemia so have also started a gluten free diet which I immediately felt the benefits of. I am also taking Folate supplement but not really sure how much I should take

It wont surprise you that I am going to change my doctor.

Now from what I have read, B12 has an impact on all of these problems. Ie. thyroid has an effect on B12 then you read that low B12 has an effect on Thyroid and also that both have an effect on testosterone.

I am really not sure what my next step should be! What test's should I insist on when seeing another doctor? And in what order?

I have not done enough research to really understand the Haematology results so any help there would be gratefully received. (doctor made no comment on them)I haven't included cholesterol results but I know they are quite high.

Many thanks in advance for your time with this

Pete

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Your folate level is very low and this gets used as it works with the B12 and helps your iron produce red blood cells.

I suggest you ask your doctor whether you should supplement with folic acid if you are not already.

I'm not medically trained but there are others on here who will be able to give you good advice

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I should have added that I do also have Vitiligo over my body and have had it for about 10years

Pete

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Sorry about this but I said my memory was crap!! I have also had pins and needles in hands for a couple of years and often feel the need to put them under a cold tap.

Pete

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Sounds like you have made the decision to go at least with the B12 deficiency diagnosis. Further testing for B12 should be high, I.e. >1500 ng/L and don't let your GP tell you that it is too high or that your levels are now "normal" and take you off further B12 injections.

Start a logbook of your symptoms. You will be your own experiment for a while to determine what works and which symptoms are from the B12D, from the antidepressants, the B12 injections and food. Once you are on B12, it is like a roller coaster ride of highs and lows until you get the right B12 levels and vitamin supplement levels.

For me the anti depressants stopped my ability to ejeculate and I reported this side effect to my GP, he switched me to another antidepressant which did the same thing. He eventually increased my B12 (hydroxocobalamin) injections to monthly and took me off the antidepressants altogether. The antidepressants also gave me tinnitus. I was only on them for a month to treat my "anxiety" which the Dr diagnosed from all the new symptoms I was finding by using the logbook method to sort this all out.

We have all had to get our GPs past the "I've got a hypochondriac on my hands stage".

Take care when coming off the antidepressants, if that becomes your desire, as you don't want to commit suicide. Talk to your doctor about a trial period off of the antidepressants. Use the logbook to monitor your symptoms and treat any thoughts in this area as another symptom. These psychological symptoms are the side effect of the neurological damage in the brain. The brain fog and issues with crowds are two more neurological symptoms.

The crowds issue for me was more like I lost my spacial awareness (directionality) of the sound which impacted my brains ability to ignore one some and focus on another one. Going one-on-one with another person was fine as long as the rest of the room was quiet.

Low testosterone also impacts energy levels. I was on androgel for a while but it was too much in regards to the corrections to testosterone due to the correct B12 levels. Treat the libido as another symptom to monitor. Also look for a new symptom of "randyness/horny", how better to say this?

Folic acid - max 5 mg daily. Slowly increase to this amount while monitoring your symptoms. New symptoms also appear so take what you can tolerate. For me it is thumping in my ears that is a marker symptom that the balance between B12 and folic acid is out of whack. Additional B12 (methylcobalamin) 5000 mcg supplements is my solution between injections. I take 6x 800mcg tablets that I spread throughout the day.

You also need a daily multi vitamin for the minerals and metals - look for one with copper. And monitor your symptoms when you start on it. Likewise for B6 and B1 (100 mg) daily, these support nerve repair.

Regarding the gluten free diet, also look at going dairy and soya free. These symptoms appear 3 to 48 hours later so just confuse the issue of sorting out symptoms.

Lastly new symptoms will appear or existing symptoms may appear to get worse once you are on B12. These symptom appear within 72 hours of the injection. Inscreased pain, hunger etc are caused by the nerve repair. For me, the stronger these symptoms are, the lower I was on B12 before the injection. This indicated that I needed more frequent injections. You may find your existing symptom appear to get worse between 3 and 48 hours after your injection.

After I moved to the USA, I used this logbook method a second time to get my GP over here to give me weekly cyano B12 injections.

The trick is the change something and monitor your symptoms over a two week period. Don't change everything all at once.

I would say getting B12 and folic acid levels right first is your top priority. Wait to get off the antidepressants till last since you have been on them for so long.

I can't speak to the hashimoto personally.

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The logbook also helps with the short term memory loss. But you must be vigilant to record things first when they happen. You become your own guinea pig in this experiment to get things right.

Share your logbook with your GP at each visit and get him to buy into the idea of treating by symptoms instead of all the testing which gets confusing after you start on B12.

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Hi Mojo2460. Hello and welcome. First, I'm sorry that your GP has dealt with you so badly over the years and that it's had such a detrimental impact on your life. Unfortunately, many here will empathise with your situation since such horrifying lack of care from a GP is a common theme here.

And well done for putting your foot down - metaphorically speaking.

First, to your results, related things, then some suggestions for your new GP and some links to reading that will help you to help your new GP to help you (it will come as no surprise that many GP's are ill-informed about too many things (pernicious anaemia, B12 deficiency, Hashimoto's...and oh too many things altogether 😣).

Hb - just over the top of the reference range - can be caused by dehydration, smoking, IBS - to name but a few things (usually the body's way of reacting to low oxygen concentration in the blood as it makes more hb to try and compensate.

HCT - just over the top of the range - most common causes are dehydration, smoking, excessive alcohol consumption (making no assumptions here 🙃). Can also be caused by other health conditions (polycythemia vera, heart/lying conditions, liver/kindness disease (though it would likely be much higher if this was the case). Your new GP will assess this in light of your other blood tests, medical history, examination etc. etc.

MCV, MCH and MCHC - all of these are at the top end of the reference range and could indicate either resolving of developing macrocyclic anaemia (large red blood cells) often - but not always - associated with B12 deficiency. Also present on folate deficiency.

CRP - this is raised. The CRP is an inflammatory marker which shows that inflammatory processes are occurring somewhere in the body (more on this below in suggested tests).

Folate - low in the reference range - needs to be higher (b12 and folate work together so if folate is deficient or low in the range then the body cannot utilise B12 properly.

Serum B12 - very low in the reference range - low enough for you to have the symptoms of B12 deficiency (well done for,pushing for treatment). Note - once your folate level goes up your B12 level is likely to drop further as tour body starts to use more B12. However, as you e started B12 injections, that won't be a problem.

Thyroid results best dealt with by the very good folks on the thyroid forum.

Sorry, can't comment on the other results.

So, to things:

Hashimoto's is an autoimmune condition (as you probably know by now 😉). Autoimmune conditions tend to come in clusters so yes, you may well have pernicious anaemia too (thought B12 deficiency also has other causes). Again, PA I and other autoimmune conditions are more likely if someone in you family also suffers from any autoimmune condition). Vitiligo is also an autoimmune condition - a known symptom of B12 deficiency, but also symptomatic of other autoimmune conditions too.

Also - loss of libidos is also a potential symptom of B12 deficiency, as are other symptoms you describe.

The symptoms you describe could be due to Hashimoto's as there are lots of cross-over symptoms between the two so it's difficult to know what symptoms are due to B12 / Hashimoto's - and it's very common to have both conditions at the same time. Each needs treating simultaneously.

However, the fact that you are experiencing some recovery following your B12 injections is highly indicative that B12 deficiency is one of your problems (hopefully, your new GP will recognise this as a successful treatment trial - and should continue your treatment).

I also note that you have neurological symptoms (pins and needles, numbness, etc). So, you should be having more frequent B12 injections (after the six loading doses, B12 injections every other day until no further improvement - sometimes for many months). Many GP's don't know about this regime - details in the links below - BNF and BSCH guidelines. This is important since having the correct treatment in the early stages of diagnosis makes for better outcomes (under treatment with B12 can result in potentially irreversible neurological damage - a condition called subacute degeneration of the spinal cord (again, many GP's are not aware of this).

I think while,you are waiting to see you new GP it would be advisable not to take any supplements that have not been prescribed for you (the exception being folic acid - 400mcg daily as a maintenance dose - your new GP can check levels and prescribe a higher dose, if necessary).

If you do add in a B complex at a later stage, take care with the dosage of vitamin B6 - many contain well over the recommended RDA (sometimes 300%+) - And over supplementing with B6 can cause potentially irreversible neurological damage 😣. And taking supplements that are not needed can cause unwanted side effects. So...research needed before supplementing - if your new GP is 'good' he can check your vitamin levels for you so that you get a better idea of what's going on (or not) vitamin wise.

So...to the tests and what to ask your new GP for:

B12 injection regime for those with neurological symptoms - every other day until no further improvement. Take evidence from the links below (BNF and BCSH guidelines). If GP reluctant, point out the dangers of under treatment (subacute degeneration of the spinal cord - get information about that from the Pernicious Anaemia Website or the Intenet).

Ask for anti-IF antibodies blood test. But...the test returns 50% false negative results so you can test negative and still have PA. Diagnostic flowchart in the BSCH guidelines outlines how antibody negative PA should be diagnosed (many GP's have not heard of this).

MMA and Homocysteine blood tests may have been useful to confirm a diagnosis of B12 deficiency but....these tests will now be skewed - and likely normal - because of the B12 injections. But no matter - much better to have started on B12 treatment 😀.

Ask your new GP to repeat the CRP and add ESR as well. These tests are called inflammatory markers and if still raised, further investigations are necessary to find the causes of inflammation (they tell you that inflammation is present, but can't identify the specific causes of inflammation.

Ask GP to do a full autoimmune panel. The presence of diagnosed autoimmune condition (Hashimoto's and potentially PA) may mean that you have other autoimmune conditions - and something is going on because you have a raised CRP (inflammation, somewhere...). If any of these markers are raised, again, they can't diagnose a specific condition but will indicate if further investigations are necessary. Further investigations would be done by a rheumatologist - so your GP should refer you if the results are raised.

Mojo4260, you'll have to excuse me for a moment. We have a thunder storm and I may lose the Internet...and if so, when I come back and re-load this page...the this reply will disappear 😱. So, will post now and add the rest shortly....her it comes and prepare to receive more incoming...😀

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So mojo2460...here's the rest (we're still storming so fingers crossed...

Your new GP may want to re-test your B12 levels so be aware...your serum B12 levels a boiled be very high: this is a result of the B12 injections and is as it should be. Some GP's think that this indicates that treatment is no longer required (because B12 is back in the 'normal' range): Wrong. All the guidelines state that once B12 injections have commenced , testing is no longer necessary (unless checking for low levels) - high levels should NOT be used as a reason to disco tiniest treatment...just so you know (more information about this in the links below).

And finally...to the links. These contain lots of useful (and very interesting 😀) information about the diagnosis and treatment of B12 deficiency (whether causesd by PA or other causes), together with the guidelines that GPs should follow, together with some myth busting information that will help you to educate your GP (if this is needed) but, more importantly, enable you to see exactly what he/she should be doing to help you (and you'll,ha e the evidence to show them, if needed).

Please don't be daunted by what looks like a lot of information...most are only one page long, the longer BSCH guidelines have summary sections (if you can't face the whole thing initially) and the haematologists research/review on B12 deficiency treatment is well worth a read - perhaps by your GP too 😉. The information will really help you - with your GP too - so just eat the elephant in chunks (that's if you don't ha e too many gastric problems 🙃).

And finally finally...please do post again if you have more questions or need more help with your new GP. Lots of lovely people here to pop along to help and support you.

Hopefully, you're now starting to move in the right direction and your years in the medical wilderness will become a thing of the past.

Good luck, keeping everything crossed for you...let us know how you get on...here come the links...

b12researchgroup.wordpress.... (Serious Caution Note about the use of Oral and Sublingual B12 Supplements)

evidence.nhs.uk/formulary/b... (BNF B12 Deficiency: Hydroxocobalamin Treatment Regimes)

pernicious-anaemia-society.... (PAS Symptom Checklist)

stichtingb12tekort.nl/weten... (BSH B12 Deficiency / PA Diagnostic Flowchart)

onlinelibrary.wiley.com/doi... (British Committee for Standards in Haematology (BCSH) Guidelines: Treatment of B12 Deficiency and Folate Disorders)

bloodjournal.org/content/bl... (Haematologist B12 Treatment Review March 2017 – Includes Advice No Reason to Advise Against Self-Injection/More Frequent B12 Injections)

cks.nice.org.uk/anaemia-b12... (NICE Guidelines Treatment of B12 / Folate Deficiencies)

onlinelibrary.wiley.com/doi... (UKNEQAS B12 Treatment Alert, Neurological Symptoms and Risk of Subacute Combined Degeneration of the Spinal Cord)

stichtingb12tekort.nl/weten... (Problems with Serum B12 Test)

stichtingb12tekort.nl/weten... (Testing B12 During Treatment)

stichtingb12tekort.nl/weten... (Misconceptions About B12 Deficiency – Good to Know Before Seeing GP)

stichtingb12tekort.nl/weten... (B12 Treatment Safety / Long Term Treatment for neurological symptoms)

stichtingb12tekort.nl/weten... (B12 Deficiency: Neurological Symptoms Can Present Even When B12 is ‘In-Range’ and Without Macrocytosis (large red blood cells) or confirmed PA Diagnosis)t

stichtingb12tekort.nl/weten... (B12 and Intrinsic Factor)

👍

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