Hi I only joined today so would be grateful of any advice in advance. I'm a 53 yr old female who had a mesenteric infarct necessitating removal 2/3 small bowel in 1983 inc terminal ilium. Have 6 ft left which is not working well so have several operations for bowel obstructions.
Since then have developed hypothyroidism, cholecystectomy, pancreatitis, TIA, osteoporosis, numerous denervations T4-T12, swollen painful joints & regional chronic pain syndrome. Currently unable to tolerate solid food so nutrition poor however 2 stone weight gain due to oral steroids.
Recently moved to Weymouth from London and GP + Consultants are struggling to get a grip on my med history. Today Consultant told me that RBC's were enlarged but no treatment, however
I gave myself an inj of Hydroxycobalamin1000mcgs as felt so exhausted and brain fog +++.
Is megablastic anemia similar to PA and is there any specialist nearby, like Exeter who can look at me as a whole person rather than in the past different specialists just looking at a small part of what's going on, hence fragmenting my care and getting no where. I am sure many of my symptoms are linked to frequent bowel obstructions and malabsorption syndrome.
I am sorry this is so long but i am feeling so low and just desperate to find someone who can help to see the whole picture.
Thanks
Cezzie5
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cezzie5
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Have you joined the PA Society? If so, you can ask to speak to a nurse who will no doubt be able to give you some good advice. There are lots of links between PA and other conditions, especially gastric. Have a look at a blog on here by medicalsceptic 'B12 jabs are the least of my concerns', it's quite interesting and may be relevant to you. Sorry can't help any more...
Hi, I was under a private doctor specialising in thyroid problems until just recently and he told me that my pernicious anaemia could be as a result of my underactive thyroid problem as it can cause absorption problems. Sorry I can't answer your question fully.
Thank you MCMC, any info is always appreciated. I was very healthy before I had the blood clot in the bowel, however subsequent poor absorption from having so little small bowel over the years has poss led to whole the whole body being out of sync. So never sure what causes what.
How did you find your private Specialist /or was he recommended?
He was brilliant. He helped me regain my health, through a sensible increase in my thyroid medication. I would still be quite ill under the nhs treatment for my under active thyroid condition. I joined thyroid uk and health unlocked thyroid support group. He was recommended by a lot of people there.
I am so pleased that someone was able to sort you meds out with such a positive result and hopefully get your life back on track..
In your experience was a deficiency in thyroxine worse than PA. symptoms? I Joined a website called Stop the Thyroid Madness but don't have enough hours in the day to read the blogs. x
If you go to the top of this page and click on my communities, a drop down menu appears and you can search other communities. Thyroid uk support will be in there, if you click to join, you don't need to set another password, as you are already a member of health unlocked. I found loads of good advice on there. I'd say it's easier reading than stop the thyroid madness.
I found thyroiduk.org.uk website very easy to follow on understanding more about thyroid conditions and it was through them that I first joined health unlocked and found Dr Skinner.
It's hard to say which is worse thyroid problems or PA. i thought it was thyroid symptoms again before i was diagnosed with PA. There are a lot of similar symptoms, but I'm still suffering with symptoms of PA before my injection is due. I think I'm more emotional when lacking b12, my nails are very dry & brittle and my hair is very coarse. I wake up with numb hands on a morning too. My GP has just recently agreed to 8 weekly b12 jabs but I feel I could do with them sooner!
Hi MCMC, apologies for the delay in reply but have been out of the loop for a few weeks,.Feeling better now but sometimes lack the concentration to read the blogs on other sites.
Where can you see Dr. Skinner and does it have to be done through GP referral?
I hope the more frequent injections help and apologies for asking so many questions but appreciate your replies.
Dr skinner is a private practitioner,who needs you to be referred by your GP, so he is able to see you.
He practices in Birmingham. He also holds a clinic in Glasgow every six weeks.
If this is too far for you to travel, then there are other private practitioners recommended throughThyroid uk. If you go on their support site, someone will supply you with the info.
If you'd like further info from me, send me a private message and I'll be only too glad to give you further info.
hi, i have only just read this post,i too have underactive thyroid,b12 def,but its migraines that i cannot cope with, my neurologist and gp, have tried everything, zomig, a triptan sometimes works for me,i am pretty desperate at the moment with nowhere to go......
Hi sherbertj, really sorry for the delay but have have not been online. I too get mega headaches that make me feel sick. Have you ever been diagnosed with arthritis like osteoporosis. I have had the latter for some years and have a narrowing of 2 of the cervical disc's which causes these headaches. I had a bone density scan to confirm diagnoses and am under a pain team that carry out steroid with local anaesthetic injections which help temporarily but good to get relief even for a short while.
Drugs like the old style antidepressants such as Amitriptyline or the newer drugs such as Gabapentin or pregabalin have found to be useful in some types of pain.(particularly neuropathic pain) so may be worth discussing this with your Endo or GP.
yes i have got arthritis in my neck and spine ,.I have not had a bone density scan up to yet.I am on a small dose of amitriptyline which seem to help a bit.Gabapentin and topriamate have bad side effects.
Thank you for your reply,it really does help having some support
There has been a lots of research carried out with regards to the relief of Nerve Pain, one of these programs that reported great success, was undertaken in India, this program reported the use of Methylcobalamin mixed with Gabapentine and a documented account is available to you if you simply click on the link below. If you find this hard to get to grips with, your G.P. or Consultant may be willing to help you through it.
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