Hi please help! Appt with GP today

[Saya85]

Hi everyone, this is my first post (directed from thyroid UK forum) and I have a GP appt today and I’ve just realised I might have a severe B12 Deficiency and possibly even PA!

So was hoping for some quick advice- ive read a lot on this site already so I think I’m justified in thinking this but would be great if someone could let me know if they agree! And direct me in how to tackle this with GP.

The below blood test results were taken in April whilst I was bleeding heavily (despite being on microgynon- have very heavy irregular periods) and very ill generally.

Bear in mind I was taking folic acid supplements daily and on/off multivitamins with iron supplementation. So my other MCv and MCH were ok and iron.

Main concern: However the MCHC result was quite high (372) and GP said all was fine. Does this point to B12 Deficiency? Or PA? Is it significant enough?

I’ve included a lot of extra info below but obviously don’t expect anyone to read all that! Any help would be grateful - we are due to have frozen IVF in Feb/March and obv I’m keen for everything to be primed before that. thanks in advance ☺️

Some background:

1) I have Polycystic ovaries

2) I’m Autoimmune Hypothyroid- Tx with levothyroxine. (100/125mcg)

TSH :2.9-3.2 atm and free t4: 24 approx

Never tested for free t3.

TPO antibodies 523 (normal range is 0-50)

(I know one autoimmune condition can often cause another/linked to another)

3) Beta thalassemia trait in family. We were tested as children and I believed I didn’t carry the trait but now I’m not so sure if my memory is correct.

- have always had anaemia signs but often not anaemia Via blood tests.

I was severe vit D deficiency last year (undetectable blood range) was given high dose treatment and told to continue with 1000IU daily since (have to say I’ve been lax with that over summer and now)

Symptoms:

- increasingly breathless- always sighing (people comment on it!) short sharp breaths always- have to actively take deep breaths and never feel as if I’m actually getting any oxygen in! (I do have mild asthma but inhalers don’t solve it and it’s not wheezing)

- increasing dizziness and balance problems- vertigo motion sickness (never had these issues before)

Thought this might be ear related as have also been getting earaches-sensitivity to sharp loud sounds, slight tinnitus? And crackling in ear.

Also thought was thyroid related but now thinking PA.

- increased redness around cheeks and nose and excessively dry skin recently (was on holiday recently and a lot of time in pools etc but have increasingly had dry skin for ages)

- sudden diarrhoea (always have digestive issues but it was really bad in April- even went private GP to get stool tests done but never completed it)

- increased swollen tongue and tingling. Pins and needles and ‘crawling sensation on face and legs/arms)

[clivealive Forum Support]

Have you had serum B12 and serum Folate tests done as I couldn't see them on your report?

[Saya85 in reply to clivealive]

Hi Clive,

Thanks for your message.

No I haven’t been tested yet. Thats why I was asking about MCHC, and whether this points to a B12 Deficiency - so I can ask my GP to test me. As I also have a lot of symptoms

[clivealive Forum Support in reply to Saya85]

High MCH scores are commonly a sign of macrocytic anemia. This condition occurs when the blood cells are too big, which can be a result of not having enough vitamin B12 or folic acid in the body.

If you have thyroid problems this may put you at risk of developing a B12 deficiency.

Ask to have B12 and Folate levels tested.

The test for P.A. is more specific and your doctor may wish to check the above first.

Have a read through the N.I.C.E. guidelines on the treatment of B12/Folate deficiency.

Click on the link, then on "Scenario: Management" and scroll down.

google.co.uk/url?sa=t&rct=j...

I am not a medically trained person but have had P.A. (a form of B12 deficiency) for 46 years.

I wish you well

[Saya85 in reply to clivealive]

Thank you! That’s very informative and reassuring. I’m annoyed he didn’t pick it up in April as I feel my symptoms have just worsened and it affected my ivf also 😞

But testing will tell. Many thanks again

[Saya85]

I just got off phone to GP- and he agreed to do the base tests like ferritin vit D folate and b12 etc

Was in rush to get me off phone so couldn’t really talk about PA specifically or host of other things but it’s a start!

[Gambit62 Administrator]

Saya

MCHC is a ratio between MCV and MCH, whilst it can be an indicator that your red blood cells are rounder than normal your red blood cells are actually towards the small end of the normal range, so it doesn't look as if you have macrocytic anaemia. This is a classic symptom of B12 deficiency but it also ins't present in 25% of people who have a B12 deficiency.

You have high white blood cell counts which implies that you might have an infection.

I would also suggest posting in the TUK forum about your thyroid - to be honest, from the results above I suspect it could still be an issue as you really do need to be looking at T3 as well as T4 after you start treatment, assuming you have started treatment.

healthunlocked.com/thyroiduk

[Saya85 in reply to Gambit62]

Hi gambit! Thank you, that makes a lot of sense.

I do believe I have a b12 deficiency among others, and you’re absolutely right about T3. I suspect that’s why my tsh is going up over time.

However getting the Gp to listen to me let alone order the test is difficult. That will be my next fight!

However I did read that b12/ferritin/folate/vit D are all required for good t4 to t3 conversion so I would hope if I sort these out it will improve my thyroid function.

I did have high white blood count but I was tested for urine infections and negative. I didn’t have any other symptoms of an infection, except for tonsillitis (poss EBV??) 5 months earlier.

But it does feel as if I’m fighting an infection all day every day with recurrent fevers but no progression.

I have autoimmune thyroiditis- would that explain the results? Over active immune sustem?

[Gambit62 Administrator in reply to Saya85]

I had auto-immune gastritis first and have recently developed auto-immune thyroidosis and finding that the treatment so far really isn't suiting me - not sure if that's too low a dose, problems converting T4 to T3 or just that starting treatment means that a hidden issue with some other part of the endocrine system may have come to the fore. My mood was really, really bad just after starting on levo - then I think I got to the point where I was fet up with feeling fed up - I'm managing to do things but any activity just leaves me so wiped out.

Whilst it is true that having everything in balance helps things work better - like having a well serviced car - it isn't a guarantee that your thyroid will get back to what it was - as the antibodies will still be attacking and damaging it.

I'm not entirely sure what the link is between thyroid and problems absorbing vitamins and minerals - whether it's direct or indirect as there does seem to be a huge cross-over between autoimmune thyroidosis and auto-immune gastritis, so the causal relationship could be that rather than something specific to do with thyroid function. Quite possible that the quacks aren't that sure and there could be a number of different ways the two get connected.

[Saya85 in reply to Gambit62]

I can empathise with that!

Apparently more and more research is saying a lot of autoimmune conditions are linked to the gut. Whether directly or indirectly through a leaky gut.

Gluten mimics thyroid cells apparently and therefore triggers the thyroid antibodies reaction , similar to rheumatoid arthritis too.

It really is a whole new world- but thinking about traditional medicine where they often link to the gut and the old adage ‘you are what you eat’ I think nutrition and the gut is poorly understood in all strains of medicine.

I’d like to tell you it’ll get better but understanding your condition helps a lot!

Are you on thyroid uk forum? Posting up your results there would be great start to work out where it may be going wrong for you. So much brilliant information.

And I found Isabella wentz thyroid pharmacist resources really helpful!

[Gambit62 Administrator in reply to Saya85]

bit sceptical about leaky gut ... as I think the chap that originally proposed it has since changed his mind. No doubt that gluten intolerance is a real thing but ...

Regularly around TUK.

[Saya85 in reply to Gambit62]

Whatever the mechanism actually is I can personally attest to these things having at the very least made a difference to how I feel with my conditions. Where medication has not.

Even if it’s just poor absorption of minerals and vitamins that exacerbates our condition.

But yes I remain sceptical of all ‘cures’ out there whilst keeping an open mind.

Hope you find something that helps you! Good luck

[KimberinUS in reply to Saya85]

It looks like you have an infection to me too.

H pylori effects b12 and iron. I have tested positive for active h pylori infection (breath test) twice now. And my wbc was only at 9.2 and 9.6

It took a long time for me to get tested and diagnosised with h pylori because i didnt have any stomach pain to discuss/clue the doctor about. I only had nausea, which i didnt discuss with doctor for a long time, (possibly 3 years)because compared to my b12 deficiency symptoms, exshauted, horrid memory, low/no concentration, irritability, ect. A little nausea wasnt worth mentioning. I think this means i just didnt have an ulcer yet.

It wasnt until i started looking for "root causes" of b12 deficiency that i demanded testing for h pylori. And yes, i mean demanded. I had to argue with my doctor for testing. She wanted to start treating/medicating me for all kinds of stuff, thyroid, hormones, depression and i just flat out refused until h pylori was tested.

Best of luck

[Saya85 in reply to KimberinUS]

Yikes! I’ve always suspected h pylori or the likes also as have digestive issues etc too but not acid reflux or such. Always feel a very slight nausea....

I think that might have to be the next step- did it clear up your other deficiencies and symptoms once treated?

I read treatment is either antibiotics or diet related

[KimberinUS in reply to Saya85]

Im still taking antibiotics so idk yet.

I was originally positive in August 2017. I took the following treatment except i doubled it to two days.

aafp.org/afp/2004/0315/p150...

It didnt work. I initially felt better (never well) but then slide backwards. Retested still positive Nov 2017 and following is treatment im doing because im willing to be sick from antibiotics for a little bit in order to hopefully get really well in the future.

Day 1&2

2 15mg PPI and 525 mg pepto bismal 4X daily.

I have read extensively on h pylori and both of these work to reduce h pylori on their own without antibiotics BUT the complete kill rate is low to non existant. H pylori lives in stomach lining and as the stomach lining cells slough off (like skin cells) the h pylori floats away from the area it has settled in, floats into the area of stomach with a higher acid level. H pylori senses the acid, detaches from the cell it was attached to and resettles back in stomach lining again. The ppi and bismuth both reduce the acid in the stomach which means the h pylori gets further away from its home base before detecting acid. This allows the antibiotics opportunity to kill it.

Ppi can take 1-4 days to reach maximum effectiveness. I used these for 2 solid days before starting antibiotics.

Day 3-4

2 15mg ppi, 525 mg pepto, 1000mg amox, 500mg clarithrmycin, 4Xdaily.

Day 5-6 same doses 3X dailys

Day 7-13 same doses 2X daily

Day 14-20

2 ppi, 525 mg pepto, 1000 amox, 500 mg metronidozole 2X daily

Day 21

2 ppi

Day 22

1 ppi

The reason for slowly coming off the ppi is because i have read research that says once h pylori is eradicated the parietal cells (stomach cells) repair and increase production of acid at 250X greater amount than amount of acid during h pylori infection. This is called acid rebound. The study i read tested rebound acid 12 weeks after eradication treatment so it isn't necessarily going to happen the day or even the week i stop taking the ppi. I am just concerned as i have never taken a ppi before and read that some folks struggle with burning/heartburn/reflux when they stop taking ppi.

I am on day 18.

Diarreah from taking this many antibiotics was addressed with probiotics starting on day 8 of treatment. I should have started it sooner. I also got a yeast infection around then so be prepared if you are female.

People keep asking how i am feeling and all i would say was fine. No one really wants to know about my diarreah or yeast infection. And i really didnt feel any better. I assumed this was due to not getting any nutrition during last couple weeks since acid is so very low. HOWEVER, i do feel better today. Not sure if because i have taken for so long, or because i have made the switch to metronidazole or if because i got a b12 shot yesterday (doesnt really make sense because that was 3rd b12 injection while on treatment) or if because i ate meat twice yesterday. All i know is my facial color has been pale and i still felt half dizzy, blurry vision, kinda weak and it is less this morning.

I have every intention of keeping this forum updated on whether or not I start holding onto my injected b12 after h pylori is eradicated.

Supposedly intrensic factor production restarts/increases once h pylori gone.

Im trying to stay positive mentally (not for h pylori lol).

[Saya85 in reply to KimberinUS]

Lol wow - the treatment plan itself is making me dizzy.

I think I’ll wait for my results on b12 and then push for further testing. I desperately want to start feeling well but I’m getting more and more anxious of the mountain of problems lying underneath and whether I’ll ever be able to combat it.

I’ve alresdy started feeling better just by taking multiB vitamins