Weak, tired, aching, chest pain - please help

[jostafford0]

Hello,

I posted my private blood tests a few weeks ago and now things have took a turn for the worse. I can hardly walk with a heavy, weak feeling and I have pains in my chest radiating all over my body, my breathing is shallow too. I have tinnitus, bleeding gums and my hair falls out easily. I have low B12 but not under the threshold and my nhs blood tests show low cortisol too (I haven't seen the results). Does anyone know what this could be. The feelings are the worst I have ever felt. I have Hashi's, ulcerative colitis & endometriosis. I'm going to make an urgent GP appt tomorrow if I can.

B12 - 239 (threshold 191 - 800)

Vit D - 59

Tsh- 2.39

[Kellyjam1]

Hi, I felt like you for 2 years with similar B12, TSH and also low cortisol levels. I became so unwell with no help from GP's. I even changed practices but was still not helped. I suffer from coeliac so I don't think taking b12 supplements was doing anything? I would suggest you contact the pernicious anemia society who will help you with your doctors as sounds like you need b12 injections. I now self medicate as I was refused b12 jabs even when my serum levels were 165! The PA society can help with this also.

It also maybe worth asking your doctors to check your thyroid and test for t3 and t4 levels also to see if this is causing you problems too. I am no expert but they are often all connected with low b12. I now also supplement with armour thyroid and I am slowly improving along with a healthy diet and supplements.

Good luck and hopefully you will be feeling better soon x

[jostafford0 in reply to Kellyjam1]

Hi Kellyjam,

Thank you for replying to me. I've called the doctors this morning and apparently they are not taking patient appointments today so I am waiting for the nurse to call me back. I've made an apt with a private Endo tomorrow and will wait and see if they can help me.

What kind of B12 do you take and do you buy the injections yourself? I have seen online that you can buy injections but I've never self injected before and I'm a little scared.

Thank you

Jo xx

[Kellyjam1 in reply to jostafford0]

Hi jo, originally I was helped by the PA society who sent me methylcobalamin for a donation. I only use insulin jabs and get these from Amazon and inject in my thigh. I was sent instructions with my methylcobalamin. It is so easy and not painful but was very scary the first time. I would fight to get the injections through the NHS first though and the PA society can help with this also. I just became desperate as I was unable to even get up the stairs or in and out the bath unaided. I also had the breathlessness and tight chest feeling which I believe is a very common symptom with b12 deficiency. Good luck with the endo, I hope you get a good one X

[jostafford0 in reply to Kellyjam1]

Hi Kellyjam,

Thank you - it is good to know I can help myself if they won't help me. How long did it take for you to start feeling better after your first injection? Jo xx

[Kellyjam1 in reply to jostafford0]

It's been a long process in feeling better for me but that's partly because I didn't realise that my thyroid was struggling also. I started b12 injections October last year and started to see an improvement after a couple of weeks. I then started armour thyroid about 2 months ago and now feeling even better. I also take herbal supplements and am gluten free and eat a healthy diet. I think it's a case of dealing with all issues and giving yourself time to rest and recover X

[jostafford0 in reply to Kellyjam1]

Do you buy the Armour yourself? I experimented with it years ago and didn't feel a difference but that was probably because I was deficient in so many things.

[Kellyjam1 in reply to jostafford0]

Yes I buy Armour from New Zealand. It's helped hugely especially now I am up to 2 grains. I noticed a difference within days of starting on a low dose but I guess everyone is different and some don't get on with armour?

[jostafford0 in reply to Kellyjam1]

Well I've just seen the GP and he advised it could be Fibromyalgia...what a load of rubbish. The on-call GP at the weekend said it could be flu. I feel so frustrated and upset with the rubbish NHS system. The Endo tomorrow is my last chance, if he doesn't re-test me or prescribe B12 it looks like I will be doing it myself.

[Kellyjam1 in reply to jostafford0]

Yes I am also have a diagnosis of fibro!!!

Good luck tomorrow

[jostafford0 in reply to jostafford0]

Also, just looked at the blood tests they did and they didn't even test for B12!

[Marggieann1 in reply to Kellyjam1]

I am taking Levo but have never heard of Armour - what is it? Do you take it along side Levo or on ot's own?

[Kellyjam1 in reply to Marggieann1]

Hi, it is natural dessicated thyroid with both t4 and T3.

Have a look on the internet. Some people feel a lot better on it than levo. Gp's don't like it though so you may struggle to get a prescription.

[MariLiz]

Just because you have a blood serum level of 239 doesn't mean it's reaching your cells. Do you find yourself sighing deeply, or gasping for air? Have a look at the Pernicious Anaemia Society website or a full symptom list. My level was 176 when I began treatment. Your doctor ought to treat based on the symptoms you are experiencing, not just your blood level. Also your TSH is a bit high. I was told if we have thyroid issues too, we need a B12 of around 1000 to assist with converting T4 to T3.

[jostafford0 in reply to MariLiz]

Hi MariLiz,

Thank you for your reply - I'm really grateful.

I have tried to raise my thyroid meds but I always get insomnia and palpitations. I'm currently on 75mg one day 100mg the next and have tried to go up to 100mg but had to reduce it again. My stomach also hurts and is irritated when I take 100mg.

I will take a look at the Pernicious Anaemia website now, thank you.

Jo xx