Advice needed

[mc_neary87]

Hi all,

I am new to PA society but was directed here from thyroid UK due to the results of a recent private blood test. I've been having symptoms for the past 15 years of fatigue, waking up with hangover feeling, weight gain/loss, tinnitus, shortness of breath, palpitations, rapid heart rate while resting, feeling wired, cagey, depression, anxiety and more recently a quite drastic loss in my short term memory, brain fog, mixing up words and difficulty with thinking or concentrating. My bowel movements are also switching from one extreme to the other. I just feel ill.

I am a 30 year old male and have immediate family history of thyroid disease (both mum, dad, two sisters- both sisters recently diagnosed with hasimotos).

I was referred to see endocrinologist in Oct 2016 which found thyroid normal (can't find letter with results) and subsequent visit found b12 at 333 ng/l (190-984) and folate at 12.8ug/l (3.89-26.8). Met adrenaline was raised but not enough to cause concern. No result given from 48hr urine test.

I ordered a private in Feb 2016 which came back as

Tsh. 1.84 0.27-4.20

Free Thyroxine 17.36 12.00-22.00

T4. 120.0 59.00-154.00

T3. 5.11 3.20 - 6.80

Thyroid Antobodies

Thyroglobulin antibody

10.670 0.00-115.00

Thyroid Peroxide Antibodies

77.42 0.00-34.00

Vitamin b12. 155.00 140-724.00

Folate serum 4.26 3.89-26.8

CRP high sensitivity 0.5 0.00-5.00

Ferritin iron 115.3 30.00-400.00

I've been to see my GP today who has basically shrugged the results off and said the raised thyroid antibodies are nothing to worry about and my b12 is within normal range. He also said b12 was nothing to worry about as all it cause is fatigue. He has ordered more blood tests after I basically had to beg him but he said if these come back as normal we should park thyroid and b12 and focus on a mood disorder due to my deoression/ anxiety.

I feel lost and feel like giving up, I've been back and forth to gp for past 1t hears but made to feel like it's all in my head and I'm a hypochondriac. What do you guys feel on my results and where should I turn to next?

Many thanks in advance!!

[Gambit62 Administrator]

Is the private test Feb 2016 or Feb 2017?

if Feb 16 then did you supplement B12 between the two tests?

What other tests were done?

The results from the test by the haemo are actually reasonably good and its starting to get less likely, though still possible, that you have a B12 deficiency. The serum B12 test isn't a good single guide because people do vary a lot in the levels at which they are healthy and it's only measuring what is going on at one step in the process of metabolising B12. It will fail to pick up about 25% of people who are B12 deficient but also pick up about 5% of people who aren't B12 deficient if used as a single measure.

If your GP is looking for macrocytosis in a full blood count then that isn't the best guide to B12 deficiency either as around 30% of B12 deficiency cases present with other symptoms before they present with macrocytosis.

As you are probably aware your GP is wrong in saying that B12 deficiency only causes fatigue, but unfortunately he is far from alone in this misconception.

I can't comment on thyroid but assume that you were given advice on the TUK forum.

[mc_neary87 in reply to Gambit62]

Hi gambit62, so sorry just realised I still think I'm in 2016. The private test was done in Feb 2017, not 2016.

So Oct 2016 : b12 333ng/l

Folate 12.8ug/l

Feb 2017: b12 155pmol/l

Folate 4.26ug/l

Thanks

[mc_neary87 in reply to mc_neary87]

Also I've been taking no supplements or medication.

[Gambit62 Administrator in reply to mc_neary87]

that's okay - its easily done - just wanted to check which was the earliest test.

First thing to note is different units used - Feb result would equate to about 210ng/l - which is quite a significant drop though still in range, but much more likely that you have a deficiency and its related to an absorption problem.

Never certain how GPs are going to react to private tests but it might be worth sharing the results with him as it looks like you are heading for a deficiency though there is always a bit of variation.

if you do would suggest that you put together a list of symptoms and also highlight the problems with the serum B12 test in a letter to your GP along with details of the BCSH and NICE guidelines which also list treatment and symptoms.

[Sleepybunny]

Hi,

Are you in UK?

If in UK, info below may be helpful.

1) Pinned posts on this forum

2) BCSH Cobalamin and Folate Guidelines

b-s-h.org.uk/guidelines/gui...

Flowchart from BSH Cobalamin guidelines

stichtingb12tekort.nl/weten...

Flowhart makes it clear that in UK, patient who are symptomatic for B12 deficiency should have an IFA (intrinsic Factor Antibody) test and start initial b12 treatment. This applies whether b12 is low or within range. IFA test can help to diagnose PA but is not always reliable. It is still possible to have PA even if IFA result is negative (called Antibody negative PA).

3) BMJ b12 article

bmj.com/content/349/bmj.g5226

4) BNF (British National Formulary) Chapter 9 Section 1.2

evidence.nhs.uk/formulary/b...

5) PAS website

Have you joined the PAS? Joining this forum is not membership of PAS (Pernicious Anaemia Society). May be worth you contacting PAS.

pernicious-anaemia-society....

PAS tel no [phone]

Martyn hooper's blog

martynhooper.com/

6) B12 Deficiency Info website

Lots of b12 info and an interesting blog.

b12deficiency.info/

7) b12d.org website

b12d.org/

8) Book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper. Martyn Hooper is the chair of the PAS.

9) Book "Could It Be b12" by Sally Pacholok and JJ. Stuart

B12 Deficiency Symptoms

Are you symptomatic for B12 deficiency? Have a look at lists of symptoms below.

b12deficiency.info/signs-an...

pernicious-anaemia-society.... see Symptoms Checklist. I gave a copy of PAS list to my Gps with all my symptoms ticked.

Family history

Do any blood relatives have PA or B12 deficiency?

pernicious-anaemia-society....

What to do next?

b12deficiency.info/what-to-...

next link is about writing to GP about B12 deficiency.

b12deficiency.info/b12-writ...

Point 5 from link above may be of particular interest as it deals with those who are symptomatic but have a within range result.

Untreated or inadequately treated B12 deficiency can lead to permanent neurological damage.

I am not a medic just a person who has struggled with getting a diagnosis.

[mc_neary87 in reply to Sleepybunny]

Wow that's a lot of good info, thank you very much.