Help

[Andypandy30]

Needing a hand to hold today iv had weakness in body particularly legs numbness which has only slightly improved with weekly b12 inj last one was wed last . Very tearful and afraid today also on levothyroxine 100 mcg for hashimotos

[BonnieSue]

Hi Andypandy,

What can I do to help? I'll try to stay around the laptop from time to time today if you want me to. Just let me know what you have in mind.

[Andypandy30 in reply to BonnieSue]

Thank u sue I know I'm a bother with all my problems . Iv had 2 b12 injections . Today stiffness in knees finding coordination of hands and feet off . Weakness in muscles . Weepy ? I just took myself to bed as u know I have no one here to hold my hand . I have a twitching in my r eye today also . Is this pa or not converting from t4 to t3 or something worse . I rang doc and have an app in afternoon but I am finding it increasingly difficult to walk safely . So worried about that . Someone also mentioned taking folate and b vitamins . Can u or anyone recommend where I get them . Also sent off for vit d test today . Trying to rest eat well and drink but just cannot get past this aching muscles and weakness in legs it's scary .

[BonnieSue in reply to Andypandy30]

I'm going to let others more current on the thyroid functions give you answers to those questions. I can recommend jet.com for good prices on B vitamins and just about everything you can buy online. If you buy B12 only get sublingual. Any other is a waste of your money. Dry goods, clothing, household, etc. Watch the prices go down as you add to your shopping cart. And free delivery after about $35.00 which is easy with vitamins and a lot of other standard purchases. They sent me discount coupons in the mail on a single big postcard so watch your mail just in case.

I'll try to be a mum substitute if I can...I know you don't get much mothering or support around your house. A little light nursing skills would be appropriate for your daughter to learn. It's a part of maturing into an adult, right?

I recommend a good rest in bed and not a lot of running errands for a couple of days. Then a careful stepping out and see what your body can do without overdoing it. Are you staying home mostly? The twitching of your eye sounds like you're straining to keep it open when it needs to be shut and rested. That's part of why I recommend rest for a couple of days.

So glad you're seeing a doc. I hope he/she has answers. This weakness bothers me. I don't see vitamin deficiencies that can't be all that low causing this much weakness. I hope your doc looks long and hard.

[Andypandy30 in reply to BonnieSue]

Thank you sue for advice and mothering . I am trying to rest and do what I can . It is bothering me too x

[Sleepybunny]

Hi Andypandy30,

Sorry to hear you are finding things difficult.

How many B12 injections have you had? It can take a period of weeks even months for some people to notice a difference in their symptoms.

Have you been diagnosed with PA (Pernicious Anaemia)?

[Andypandy30 in reply to Sleepybunny]

Thank you for reply . Yes I had low b12 results and gp suggested starting weekly injections . Maybe I'm being impatient but I'm having difficulty walking muscle weakness and aching muscles . Twitching in my r eye today . Feeling low. And v fatigued . As I replied to bonnie sue I don't know what way I should feel doctor never explained or is it just everyone is different . I had to get money from cash machine today and I got a taxi there and back but it was like I couldn't trust my body and I got afraid even tho I did it . I feel so vulnerable . Sorry for self pity I just want to get well x

[Sleepybunny]

Hi,

You mention low B12 results but have you had the Intrinsic Factor Antibody (IFA) test? This is a test that can help to diagnose PA (Pernicious Anaemia) but the test is not always reliable and it is still possible to have PA even if IFA result is negative (called Antibody negative PA)

Are you in UK?

If yes, then have a look at flowchart below. It's from a UK B12 document.

stichtingb12tekort.nl/weten...

The flowchart mentions that in UK, patients who are symptomatic for B12 deficiency should have an IFA test and start initial b12 treatment.

Link underneath to whole BSH Cobalamin and Folate Guidelines. I'd suggest reading all of it.

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

I'd also recommend reading the book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" by Martyn Hooper.

I hope your GP is trying to find out why you have low B12. Have they told you what they think is causing your low levels?

Causes of B12 deficiency

b12deficiency.info/what-are...

Symptoms of B12 deficiency

pernicious-anaemia-society.... see Checklist

I ticked all my symptoms on this list and gave a copy to GPs.

b12deficiency.info/signs-an...

PAS (Pernicious Anaemia Society)

pernicious-anaemia-society....

PAS tel no [phone] answerphone so messages can be left, may take a couple of days to get a response.

The PAS are helpful , sympathetic and a good source of information.

I have experienced all the symptoms you mentioned.

The B12 Deficiency info website has lots of b12 information. Person who runs website can be contacted by e-mail.

b12deficiency.info/

I also looked at b12d.org

b12d.org

I am not a medic just a person who has struggled for years to find answers.

[Andypandy30]

No I didn't know any of this . I will read up on this thank you so much . If I can make it tomorrow I will be able to say all this thank you

[Sleepybunny]

Hi,

Other B12 info. Some may not be useful if you're not in UK.

1) Pinned posts on this forum. I found fbirder 's summary of B12 documents helpful to read. link to his summary in third pinned post.

2) BMJ B12 article

bmj.com/content/349/bmj.g5226

3) Book "Could it be b12" by Sally Pacholok and JJ. Stuart (USA authors)

Very comprehensive book about b12 deficiency

4) UK B12 treatment

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

It might be worth you talking to PAS (Pernicious Anaemia Society) before your next appointment.

Tearfulness and anxiety can be symptoms associated with b12 deficiency.

Have you had folate, ferritin, full blood count tests?

b12deficiency.info/b12-test...

labtestsonline.org.uk/under...

Two links that may be helpful

b12deficiency.info/what-to-...

b12deficiency.info/b12-writ...

[Andypandy30]

Thank you so much for all the information I am praying I can make it to app and that I get a competent doctor mine is not so but is off at the minute anyway xx

[Andypandy30]

Cani also ask should I be supplementing between injections ?

[Marz]

I see on the Thyroid forum that you posted about your Haemachromatosis diagnois. Perhaps the good people here have good knowledge about it and can help. I would think the iron overload could be one of the causes of your symptoms. Others here may know better ...

[Sleepybunny in reply to Marz]

Links about Haemachromatosis

The Haemachromatosis Society

haemochromatosis.org.uk/

patient.info/doctor/iron-ov...

nhs.uk/conditions/haemochro...

[Marz in reply to Sleepybunny]

Thank you 😊

[Andypandy30]

Thank you Marz x

[Ryaan]

How many weekly injections have you had from start ? You haven't mentioned how long it's been since you started injections or how many in total.

[Andypandy30 in reply to Ryaan]

Hi Ryann I have had 3 so far and an due my next on Thursday X

[Ryaan in reply to Andypandy30]

So you haven't had many, you've just started treatment.

You will get better results later on. I noticed improvement after 8-9 injections.

Wish you well.