Help! Fatigue is taling over my life

[Bobbie09]

Hi guys

Off and on for the last few years I've been suffering with what they now believe could be chronic fatigue / M.E. I have seen 3 doctors and its honestly really upsetting some of the things that they've said and dismissed so far. I just feel like nobody cares how much this is completely taking over, what was, such a happy life.

I spend hours doing my own research in the hope of finding something and a pain therapist gave me the book "could it be b12? the epidemic of misdiagnosis" I was shocked but also fascinated by the book. That led me to this group.

My b12 came back as 290 so ok on their range and none of the further tests for b12 were done. My red blood cells were just in the higher end of the range by 0.4 and no folate was done.

Has anyone on here been in this situation, with an unhelpful gp that could give me any advice please?

Ideally if someone has been here themselves to give me some hope i might be on to something. Ideas on things I can do myself, ideas of what direction to point the gp in next time they shrug their shoulders as they dont know whats wrong.

Feeling hopeful, thanks in advance!xx

[fbirder]

There are lots of possible causes of fatigue. B12 deficiency is just one.

But fatigue is only one of the symptoms of a B12 deficiency. Do you have any of the others? If so then you should ask your doctor to give you a trial of B12 injections and test you for Intrinsic Factor antibodies. If the antibody test is positive or if the injections improve the symptoms then you should have injections for life.

hey.nhs.uk/wp/wp-content/up...

[Bobbie09 in reply to fbirder]

I have lots of symptoms for chronic fatigue but unsure fully on b12 symptoms.

My mains symptoms are Muscle pain and weakness, unable to carry out very simple task without causing fatigue, lightheadedness

Tight chest

Bloating

Blurry vision

Sore throat

Pale skin

Low blood pressure

Brain fog/concentration problems

Light sensitivity

Weight gain whilst eating well.

I have an appointment coming up so can the nhs still give b12 injections even if I call into their normal range. I would be so happy if they would at least try it if they don't really seem to have any other avenue they're headed for the cause.

Thanks for the link I will have a read.xx

[Marz in reply to Bobbie09]

Have you had your thyroid correctly tested ?

thyroiduk.org

[Bobbie09 in reply to Marz]

I've had it tested yes and it was 4.67. I assume it's been done correctly, although an osteopath did say I should get them to repeat it to check consistency.

[Marz in reply to Bobbie09]

TSH in a healthy person should be around 2. You have not had the correct testing as TSH is a Pituitary Hormone and does not tell you what is happening with the Thyroid. You also need the FT4 - FT3 and Thyroid Anti-bodies TPO & Tg - tested to rule out Hashimotos. This is how so many people are missed and continue to struggle. The NHS rarely if ever test the FT3 and only one anti-body TPO - it is a scandal and 1,000's are forced to have Private Testing. If you are in a position to have your tests done privately then I can send you the link. Happy to help ...

thyroiduk.org

[Dawn45]

Hi there I'm the same fatigue is taking over my life I've gone from working 6 full days to 3 days only 3 hours a day it was my b12 anemia at first (very low 48) I feel even worse now I can't do nothing I've had the same job 30 years I'm only 45 I think I've got MS or ME after 7 months in still no further I'm just in process of hospital appointments I sleep 14 hours a night and most of the day I wish you well x

[Marz in reply to Dawn45]

Just read your post/thread of two months ago and it was suggested you increased your B12 injections - more than monthly. Did you manage to do that ? Am wondering if low thyroid could be part of your fatigue ? I remember how my life was before my thyroid diagnosis - sleep - sleep and more sleep You may wish to read my reply further up !

[Dawn45 in reply to Marz]

Yes I got extra injections every month but feel worse they said my thyroid are fine if I walk more than 5 minutes I'm like a zombie for 2 or 3 days

[Marz in reply to Dawn45]

I have been on the Thyroid UK Forum here on HU for six years and if I had a pound for every time a patient is told their results are fine - I would indeed be a rich lady. On further investigation we find they are far from fine ! You are legally entitled to have copies of all your results with ranges - so you can monitor your own progress and check what has been missed.

Your surgery should have on-line access to results so worth asking. Fine/OK/Normal are opinions rather than results. It is possible only your TSH was tested - but that is only part of the story.

Your TSH needs to be around 2 - FT4 & FT3 towards the upper part of the range. TPO & Tg antibodies should be tested to rule out Hashimotos. Low B12 & Low thyroid often go hand in hand.

thyroiduk.org

[Dawn45 in reply to Marz]

Thank you so much for advice I'm going to ask for copies x

[Marz in reply to Dawn45]

You're welcome 😊

[Bobbie09 in reply to Marz]

This group is fantastic. It's so good to have people like you to help Marz. I will pay for private testing if I have to yes. So would love those details please.

My first lot of bloods I got the all clear text message. I asked for someone to run through them. Waited 3 weeks for a call and found out they hadn't even got the results they got lost! Can you believe it. Since then I always ask for print outs and go collect them. I then Google the results.

I'm finding the hospital much more helpful that the gp. I'm just surprised they don't know not won b12 and thyroid testing if it's resulting in people living like this.

Really appreciate all of your help!x

[Marz in reply to Bobbie09]

thyroiduk.org

thyroiduk.org/tuk/testing/b...

The link above takes you to the main website of the Forum - Thyroid UK. The second link details the Private Companies that send out Home Testing Kits - Blue Horizon. Medichecks is another featured in the first link - and they have Special Offers on Thursdays. 1,000's on Thyroid UK have their tests done this way - as it is the only way to have the correct testing done and to ensure treatment is correct too. Maybe a good idea to post on Thyroid UK forum with a new post with the results. Many people are on both the PAS Forum and Thyroid UK. Both are helpful in guiding you through the maze

I live in Crete - so it's all much easier for me - but I do appreciate how difficult it can be in the UK ...

[Bobbie09 in reply to Dawn45]

That's exactly how I am dawn. I jogged to the car for 30 seconds once and was wiped out for a week. I'm scared to death I'm going to lose my job too. I hope we all find some results soon.

I think my problem is a CFS diagnosis won't make me feel better. I feel I need to know why I'm getting CF, what the cause is. Otherwise il always believe they have just missed something.x

[Dawn45 in reply to Bobbie09]

God that's me all over yes I'm worried about my job too.. they have been good with me let me know if you get any better or diganoized with anything I hope you feel better soon love dawn xx

[nifuarain-63 in reply to Bobbie09]

Have you ever had mononucleosis? I think in the UK it might be called glandular fever? It has been linked to CF, though whether it is causal or just an association I'm not sure.

[Bobbie09 in reply to nifuarain-63]

No never had that and I've been tested for it too.

[Marz in reply to Bobbie09]

As the T3 is the Acitve hormone needed in every cell of your body - then it needs to be at a good level. Every one of the trillions and trillions of cells in the body have a receptor for T3 - so when levels are low there is not enough to go around and things begin to go wrong. So not testing T3 leaves patients with many other conditions - ummm ! With so many conditions like CFS - Fibro and others - the Thyroid is rarely tested correctly and so patients are mis-diagnosed. I had a fibro diagnosis in 2000 and a Thyroid one in 2005 on moving to Crete. My journey to wellness then began ...