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Pernicious Anaemia Society
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Please help, I'm having these symptoms after giving birth

Please help, I'm having these symptoms after giving birth

Hi all,

I'm new here and I want to ask if these symptoms are related to PA. I'm 30 y.o., stay-at-home mom and I gave birth to my DD in June 2016. According to the doctor, I lost 65% blood, so I got iron solution injected three times.

Almost every day I'm feeling extremely fatigued, clumsy, confused and I also have anxiety, balance problems, brittle nails, dry skin, dizziness, dehydration (checked to my Gyn and he only said I should drink more water), blurry vision, tingling sensation on my face, muscle spasm everywhere, sharp pain on my muscle which lasted for few seconds, brain fog. It was horrible and I'm still breastfeeding, which makes it worse.

.I took an iron supplement for a month and I stopped because I thought I have no iron deficiency anymore. Some days I feel okay but some days I feel worse.

And then, I started to have difficulty swallowing in October 2016, 4 months after delivery. I feel like I cannot push food and liquid to my throat. It feels like my swallowing muscle weakens and it feels horrible. The difficulty swallowing mostly happens from the afternoon until night time. I went to a GP, ENT, Gyn, Neurologist and have done an endoscopy, EMG, head MRI, allergy test, blood test and they couldn't find anything. Sometimes if I'm starving at night, I eat my baby's food. I'm really desperate.

I was sent to hospital twice in March and August 2017 because of difficulty breathing and got a blood test and ECG done and they were all good.

I also did home test kit to check my B12 levels but according to them, my B12 is still normal (67 pmol/l) (German standard). My neurologist said that he wants to check my B12 again next week.

I don't know what I should do now. I cannot take care of my DD properly. I cannot do what I want to do. I'm fed up :(

I'm sorry for the long post. I hope someone can help me figure out what it is.

Thank you so much!

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I don't know what 'normal' means because my neurologist didn't say anything about the result. All I know that every country has its different B12 level and here in Germany >50 pmol/L is considered normal. What is an 'active' B12 test?

No, I only had epidural during the birth.

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Oops, sorry I just checked the result again. Yes, it is the active B12 test.

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the test above is holo-T or active B12

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it's an active B12

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Hi,

I hope you find an answer to your health problems.

Some links about B12 deficiency

B12 Deficiency Symptoms

pernicious-anaemia-society....

b12deficiency.info/signs-an...

Risk Factors for PA (Pernicious Anaemia) and B12 deficiency

pernicious-anaemia-society....

b12deficiency.info/what-are...

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

B12 books

"What You Need to Know About Pernicious Anaemia and Vitamin 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 book about B12 deficiency with lots of case studies.

Stichting Tekort

stichtingb12tekort.nl/

Dutch website about B12 deficiency

PAS (Pernicious Anaemia Society)

Has members from around the world.

pernicious-anaemia-society....

Epidurals

I have read that in rare cases epidurals can have side effects,

"I took an iron supplement for a month and I stopped because I thought I have no iron deficiency anymore. "

Have you asked your doctor to check your iron levels? Iron deficiency can cause fatigue and other symptoms.

Have you had your folate levels checked and have you had a full blood count?

b12deficiency.info/b12-test...

patient.info/doctor/macrocy...

labtestsonline.org.uk/under...

patient.info/doctor/folate-...

I always get copies of my blood test results. I learnt to do this after being told all my results were normal and then finding results that weren't normal.

Thyroid Disease

Have you ever had Thyroid tests? Thyroid disease can cause fatigue and other symptoms.

thyroiduk.org/

Active B12 test

Had you been taking any vitamin B12 in the weeks before the test? Taking B12 before the test can affect the result.

b12deficiency.info/b12-test...

active-b12.com/frequently-a...

I am not medically trained.

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Hi Sleepybunny , thank you so much for the useful links!I'll check them out.

Have you asked your doctor to check your iron levels? Iron deficiency can cause fatigue and other symptoms.

No I haven't asked my doctor to check my iron levels. I only had complete blood count.

Have you had your folate levels checked and have you had a full blood count?

No I haven't had my folate levels checked. I should ask my neurologist next week to check it as well.

Have you ever had Thyroid tests? Thyroid disease can cause fatigue and other symptoms.

I have had Thyroid test and ultrasound but the result came out negative.

Had you been taking any vitamin B12 in the weeks before the test? Taking B12 before the test can affect the result.

Yes I took vitamin B12 supplement 4 weeks before the test, but only took it for two days in a row. I don't think it can affect the result.

But among symptoms I mentioned on my post, are they actually related to vitamin B12 deficiency?

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A lot of the symptoms you mentioned can be found in the links about B12 Deficiency Symptoms in my post above. Not sure about dehydration though.

"I have had Thyroid test and ultrasound but the result came out negative."

Which thyroid test did you have?

Sometimes doctors only test TSH which won't give a full picture of thyroid function.

Thyroid tests

thyroiduk.org/tuk/testing/t...

Have you had tests for thyroid antibodies?

thyroiduk.org.uk/tuk/about_...

Marz who posts on this forum knows about thyroid disease, may be worth searching for her posts. Might also be worth putting your Thyroid Results on Thyroid UK forum on HU.

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I had TSH test and neck ultrasound. My TSH level is 1.3. I think I should do other tests.

I forgot to mention that I have my vitamin D checked and it's very low (15.6 ng/ml).

I will check her posts. Thank you so much for your help! :)

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Hi hermion3 - best to make sure the complete thyroid profile was done - TSH - FT4 - FT3 and Anti-bodies TPO & Tg to rule out Hashimotos.

Having a baby is quite a demanding time for the thyroid 😊 - and low B12 - Folate - Ferritin - VitD are so often low in range when Hypo.

Hope you soon feel stronger.

thyroiduk.org

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Hi Marz,

thank you for the advice. I only had TSH test and thyroid ultrasound. My TSH level is 1.3 and nothing shown in ultrasound.

I have a low vit.D level (15.6 ng/ml). My neurologist had no idea why I have so low vit.D and he didn't give me any vit.D supplement.

I think I should check a complete thyroid profile, Folate and Ferritin, as my B12 is in a normal range. I will keep you posted.

Wish me luck :)

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Your VitD may be better around 50/60 ng/ml - I would take 5000 IU's daily and re-test at the end of winter. I would also take the co-factors VitK2 MK7 - as VitD improves the uptake of Calcium from foods and the K2 ensures it is directed away from the arterial system and soft tissue and into the bones and teeth where it is needed. Also take magnesium - there are many so choose carefully.

thyroiduk.org.uk/tuk/testin...

The link above takes you to the companies for Home Testing Kits - well used by Thyroid UK members. Blue Horizon Thyroid Profile 11 is popular as it contains all the Thyroid tests and vits and minerals.

grassrootshealth.net

vitamindcouncil.org

Two links above about VitD :-)

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Hi Marz ,

I was feeling dizzy today so it's difficult to think what I should reply. Anyway, thank you for your advice! But can we take VitD supplement without doctor's advice?

I took magnesium supplement for three days and I had abdominal pain&nausea on the third day. I'm not sure whether the dose is too high (375g) or I have a sensitive stomach.

Unfortunately, I live in Germany, so I cannot buy the blue Horizon Thyroid home testing kits because they only ship nationwide (according to the website). And there's only TSH home kit (without T3 and T4).

Thank you for the links again!! It's really helpful!:)

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Yes you can take VitD without a Doc - I do ! I buy Healthy Origins 5000 iu's from Amazon as the capsule contains olive oil. VitD is fat soluble.

If you are sensitive then take one every other day to see how you go.

Maybe lower your dose of magnesium - whch one are you taking ? There are so many.

Apologies ! - forgot you live in Germany. At least you have the details of the tests required to eliminate other conditions.

If you do go for thyroid testing pop across to Thyroid UK and post your results when you have them. Members will help.

Do hope you feel stronger today and less dizzy 😊

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Not sure about the swallowing - it can be a sign of B12 but I don't think it's as time specific as you report.

Your symptoms could be B12 related but they could also be due to a number of other things -including iron deficiency though that should have been corrected by now unless you have a problem absorbing iron.

67pmol/L is actually quite a good level or holo-T/active B12 making it unlikely that you are B12 deficient.

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Is it possible to have iron deficiency despite a good level of B12?

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yes being iron deficient doesn't mean that you will be B12 deficient and being B12 deficient doesn't mean that you will be iron deficient. The types of anaemia caused by iron deficiency and those caused by B12 deficiency are quite different.

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I see, thanks for the explanation :)

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Hi hermion3

Is it possible for you to check your Folate level as this and Vitamin B12 helps your iron to function properly and make red blood cells?

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Hi clivealive,

yes it's possible. My neurologist will check my B12 level next week and I'll ask him to check my folate level as well. I will keep you posted. Thanks

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Have you been checked for h pylori?

H pyloru will take your iron and cause lower levels of stomach acid, therefore the valve between the esphogus and stomach may not close properly. Due to this lack of closing, some acid can get into your esphogus which can cause inflamation, which can cause dysphagia, difficulty swallowing.

This acid getting into your esphogus may not cause pain, as some people dont know it is occurring until they see a dentist whom raises concern about the erosion of the enamel of their teeth.

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Hi KimberinUS,

can H pylori be detected through endoscopy? if yes, then I've been checked but my Gastroenterologist didn't find anything suspicious. I'm feeling weak today and noticed that my stomach acid is high, so I took PPI just now.

Sometimes my throat feels scratchy and feels like a hairball sensation in my throat. My ENT-specialist did check my throat and allergy test and it was okay and I have no allergy. Is it possible that stomach acid causes this?

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It can be setected by endoscopy but i would definitely ask if they looked for it.

If not i would ask for a breath or stool test for it to rule it out.

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PPI Proton pump inhibitors can cause B12 deficiency, if you have been using these long term you are probably deficient.

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Hi Marymary7

I started using PPI since March 2017 and only take it when I notice that my stomach acid is high and cause breathing problem. However, my symptoms appear long before I took PPI.

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The symptoms of high stomach acid and the symptoms of low stomach acid are very similar.

Some people on forum have been diagnosed with high stomach acid when actually they had low stomach acid. Both conditions can lead to gastro-oesophageal reflux, I think.

Has your doctor considered the possibility of low stomach acid?

drmyhill.co.uk/wiki/hypochl...

PA can lead to gastritis which in turn can lead to achlorydia (absence of stomach acid)

patient.info/doctor/pernici...

See second paragraph in this link.

I have my vitamin D checked and it's very low (15.6 ng/ml).

nhs.uk/news/food-and-diet/t...

patient.info/health/vitamin...

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Hi Sleepybunny

Thanks for the useful links, no my Gastroenterologist didn't say anything about low stomach acid. I think I might have Hypothyroidism. Based on the link given, my symptoms are associated with Hypothyroidism, only weight gain doesn't count because I Iost weight.

I decided to pay privately for blood tests. The result will be in the next days. I will let you know once the result is out.

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It's excellent advice from the experts on here and it is all relevant. When you get your latest blood results for all the things already mentioned the experts on here will help guide you. In a new post you can add the results.

The little probiotic drinks like Yakult helped a friend of mine with too much stomach acid.....

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Thank you for your advice. I will post the blood result in a new post. Thank you!:)

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Who is in overall charge of your medical care. It seems to me that person should be addressing all of these issues and interpreting the very numerous test results. It is very stressful caring for a new born baby and must be very depressing for you as you feel so ill. In the UK a health visitor is involved in the care of new mothers and could help you sort out your problems.

I have the greatest respect for everyone on this excellent forum, but you really do need much more efficient holistic medical care to enable to cope with life and looking after your baby.

The answers provided here may assist you in discussing your problems with your main doctor and gaining the best treatment possible.

B12 deficiency can cause a wide spectrum of symptoms and effective treatment is both safe and cheap. It should be an adjunct to good medical care, but does not replace the need for a good doctor in someone with such a complex medical history.

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Hi Dewbuc

Thank you for your advice.

Here in Germany, there is health visitor for new mothers but it's more for the babies and financial problems. In general, we need to go to a GP first. Then we will be addressed to a specialist. Making an appointment takes weeks and I feel like doctors don't take my symptoms seriously. I'm going to Neurologist tomorrow to have the blood test done. I'm going to insist him to check my thyroid level, folate, etc. Will keep you posted :)

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It is very important to treat you properly for your own sake and for that of the baby. I feel very sorry that you can't enjoy having your new baby as much as you should because of your health issues. I hope someone will put all the symptoms and test results together quickly in order to diagnose and treat you properly.

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Hi again,

"I think I should check a complete thyroid profile, Folate and Ferritin, as my B12 is in a normal range"

It is possible to have severe signs of B12 deficiency with a "normal /in -range" B12 result. I hope neurologist is aware of this.

See link below, info is mainly UK specific but hopefully still of interest.

b12deficiency.info/b12-writ...

Have you ever had tests for Coeliac disease?

coeliac.org.uk/coeliac-dise...

Coeliac Symptoms

coeliac.org.uk/coeliac-dise...

It is possible to still have Coeliac disease even if tests for Coeliac antibodies (tissue transglutaminase antibodies) are negative. People with IgA (an immunogobulin) deficiency do not make Coelaic antibobodies and may need alternative tests for Coeliac disease.

Coeliac disease can lead to B12 deficiency because it can affect the gut.

coeliac.org.uk/coeliac-dise...

If you've had tests for Coeliac disease (spelt Celiac in some countries) were you given an IgA test at same time?

German Society of Haematology and Oncology

dgho.de/gesellschaft/verein...

I wondered if this society published guidelines on B12 deficiency?

I agree with Dewbuc that someone medically qualified needs to look at the whole picture.

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