Update...

[LolalalalalaLola]

Hi everyone here is an update

I in the last 15 years my symptoms are getting more severe I started to get large numb patches on my back after migraines pins and needles in my hands and feet, I have a horrible sensation starting from the base of my skull to my bra line that are debilitating I have to go to bed with it, it is so bad it affects my breathing it can last a few days at a time.

Still searching I came across a link on YouTube for Dr Chandy and B12 deficiency, my mom had also been diagnosed with a B12 deficiency so I looked into it. I was amazed to see how many of the symptoms I had that related to it so I took myself back to my doctors and told her I thought that this was my problem this is why I feel so ill, so I had bloods taken again and yes I was low in B12.

I was excited to think I had at last found the reason for feeling so tired and ill all the time.

After my loading doses to my amazement my eyesight improved dramatically my pins and needles disappeared but as for my tiredness and all my other symptoms they remained. I was gutted I asked if l could have my injections more regular than just every 3 months, she in turn wrote to a specialist at the hospital who said I shouldn't need any more that the three monthly dose but to take a blood test anyway, of course my test came back as normal which I told her I expected.

I have since got everything for giving myself B12 injection but have held off in case it skewed any of the tests my doctor sends me for...

By now I was getting headaches every day I dreaded going to bed because I knew I would wake either in the middle of the nigh or early morning with a banging head. I've still no energy, on saying that I might have two or three days out of the month where I feel great so I more or less work till I drop, it feels so good to go to bed feeling a good tired not an ill tired if that makes sense.

I went do my doctors feeling very low and desperate, I was sick of feeling the way I did, I was now waking with a start during the night my heart pounding I could feel the adrenaline coursing through my body, i told her I couldn't stand the headaches everyday, she said I shouldn't be feeling the way I do, she thought I might be suffering with chronic fatigue syndrome and wanted to do some tests on me before she sent me onto a clinic in Leeds as they wont see you until all these tests have been done.

I had an MRI on my head which came back negative for tumours, I had blood tests done for for bone cancer which also came back as negative. I'm waiting for results of other tests.

Again I was drawn back onto researching low thyroid when I came across a clip on YouTube of a woman talking to Chris Steel a Dr from one of the morning tv programs about how she felt having an under active thyroid and yes I had the same symptom even down to how she felt the muscles in her neck didn't feel strong enough to keep her head up, so I mentioned this to my doctor when I went for my results and took in a tick list from the Thyroid UK website, I went through it with her, over the years I had gone to her with lots of the symptoms so I asked her if she would send me for the tests recommended on the site. Apparently she couldn't request all the tests but she said she would send me on to see an endocrinologist, I could ask him. I have an appointment in February.

I have been to Doctors this morning and I asked if she would print out my results for my B12 test and Thyroid function Tests which she did I also asked for blood tests done for anaemia so will get results next week.

Serum TSH level (min/L)

April 2004. 2.8

April 2008. 2.93

Nov 2010. 1.8

Oct 2015. 2.1

B12

Sept. 2006 172

Mar. 2015. 193. Started loading injections then 1 every 3 months

Oct. 2015. 827

What do you think?

[LolalalalalaLola]

I'd like to thank everyone for their advice and encouragement over the weeks and months...

I've done it! I've given myself my first B12 injection, I was so brave! I had my well done sticker ready to slap on my chest and I now wear it proudly 😜

The next question is how many injections over how long?

Thanks again, I'm so pleased with myself.

[fbirder in reply to LolalalalalaLola]

How often to inject? What I've done is keep a diary of symptoms and treatment. Obviously every three months is insufficient, so I'd try injecting every two months. If that's not enough, increase the frequency. Rinse and repeat until your symptoms go away.

[Sleepybunny]

from speaking to people with thyroid problems I think that TSH does not provide the whole picture. there are other thyroid tests.

You might find it helpful to post on the Thyroid UK forum on HU. Its a very active forum.

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

[LolalalalalaLola in reply to Sleepybunny]

I did just that Sleepybunny, thanks for your reply.

[MariLiz]

They often go together as illnesses, so I think it is well worth seeing an endocrinologist. Hopefully they will test not only TSH , but free T4 and FreeT3. My thyroid problem came first, then 15yrs later the Low B12. I think if your B12 is low, then thyroid meds aren't used properly by your body. So presumably ordinary thyroid function will be compromised too. Good luck with getting things sorted. MariLiz

[LolalalalalaLola in reply to MariLiz]

Thanks for your reply MariLiz, it's good to know there are people who suffer with the same condition who have been their and done that so to speak and can offer advice and encouragement. My doctor although she's very compassionate and she does want to get to the bottom of why I feel so bad all the time won't step outside the box and use her own common sense, even though I have shown her on my iPad various things about B12 dosing from various sources, but, she has referred me onto the endocrinologist to see if part of my problem is my thyroid, from me research it seems their is a link between both, hopefully he can send me for the proper tests.

[MariLiz in reply to LolalalalalaLola]

Do hope you get the help you need from the endocrinologist. I must admit mine wasn't concerned about my B12, fortunately my GP was. Have a look at the Pernicious Anaemia Society website, there is useful information on all types of B12 deficiency. Martyn Hooper has written some good books about it. Plus Sally Pacholok's book "Could it be B12". Best wishes MariLiz