Since being diagnosed with PA, my body has disintegrated. Muscle tone gone, heart murmur, knee replacement needed and I'm always cold.

[lupin23]

Is this how life will continue. Going down hill. My injections are every 3 months and I find after5-6 weeks I start to feel exhausted again. Has anyone else experienced these problems

[Hidden]

3 monthly injections are not frequent enough for most people, so the simple answer is ask for them more frequently. Be prepared to battle with your doctor, the rare few are educated on B12, the vast majority believe that a 3 monthly jab is all that's needed. Lots of info and links here:

b12deficiency.org

From the symptoms you mention I would also ask the doctor to check your thyroid, and also folate, iron/ferritin, vitamin D and calcium (maybe a full bone profile).

Poorly treated B12 deficiency can lead to all sorts of other problems, and by poorly treated I mean 3 monthly.

Hampster

[lupin23 in reply to Hidden]

Sorry I should have mentioned, I have an under active thyroid, which I have had for many years.

[Hidden in reply to lupin23]

How are your thyroid results? It's a balancing act between the 2 conditions. When PA is poorly treated, or untreated, people seem to just need more and more levo, because the nutritional deficiencies affect conversion. Conversely, when you are getting enough B12 you can find yourself going hyper, because the levo becomes more effective, and people often need to reduce their dose.

And as I said before, the other things mentioned above are also incredibly important for thyroid hormone conversion, particularly iron and vit D I believe. And B12 just won't be effective if you haven't got good levels of folate and iron.

Have you ever had any of these other things tested? Are you on HU Thyroid UK? They're often talked about over there.

H x

[lupin23 in reply to Hidden]

Recently had tests because other problems. Nothing highlighted. Told heart problem not to worry about but knee surgery was delayed. Last blood test was within range but still get tired and achy. I do suffer from the cold a lost

[Hidden in reply to lupin23]

I would really recommend you join the Health Unlocked Thyroid UK forum, if you post your blood test results over there you'll get lots of advice. I have Graves Disease so not hypo, but I've read a lot of the posts over there. Being in range isn't enough for many people, a lot of them only feel well when TSH is below 1. It is also really important to sort out the nutritional deficiencies.

It's also so important to get copies of all your blood test results, doctors like to tell us we're normal when there's still lots of room for improvement.

You can find Thyroid UK by clicking on "Communities" on the green bar at the top of the page, then "Find a Community" - "Thyroid UK Support". Also useful is info from their main website, this link is good, scroll down to "If you are diagnosed - Hypothyroidism":

thyroiduk.org.uk/tuk/diagno...

There is also a Facebook Group for PA where you can get lots of advice, and most people have other conditions as well, particularly thyroid:

facebook.com/groups/1749289...

H x

[lupin23 in reply to Hidden]

Hi Hampster, thanks for your helpful information I will certainly follow it through. I invested in "Living with PA to try to come to some understanding because I'm not used to being poorly and in pain. I'm not a good patient, frustrated with my inability to get on with what needs doing. People do not understand the anger and frustration. Sorry I'm moaning, many are worse of than me I should be thankful. Thanks for your help and advice and listening to my "feeling sorry for myself". Regards Lupin

[Jane123]

Hi lipin23.

Im feeling very much like you are, pain in legs, hips and hands and not doing things I need to do, very fed up with myself, more blood tests, waiting to see doctor again.

Good luck to you.

J x

[lupin23 in reply to Jane123]

Hi Jane thanks for your reply, better frame of mind today but it does get you down. Hope you get a good report from your doctor. Lupin

[Hidden]

You need to report that to the doctor so your medicine can be readjusted..

Some will move your injection schedule up to accommodate your symptoms.

especially if you are on the low end of normal..