Your views on seeing an endocrinologist would be much appreciated

[Sallybones]

Hi I have to thank clivealive for replying to my last post and

can say I definitely identify with some of the things you mention plus many others things.

I had to call my GP today because the latest thing is feeling severely dehydrated, though I drink plenty water and my skin has suddenly become rough and dry especially on my lower legs and my feet are cracking. No cream helped. I can watch the fine skin bits lifting up off my legs. They feel sore too though no rash. The last few nights I've woken up several times because my tongue is almost stuck to the roof of my mouth. She's prescribing me some different cream and I've to check again for blood sugar problems though I've never had problems in that area before. Though I feel dehydrated I'm also bloated and not passing much urine!!

While on the phone with her she referred to my recent letter to her. She's still not wanting to try B12 injections even as a trial until she has sought advice from more expert persons especially an Endocrinologist as it is "not something they do at their Practice" and it will incur extra expense for them ie I think she means it has to be justified. I know it is a inexpensive treatment which if successful  would actually save them time and money. However I said does that mean you want me to see an Endo to which she said yes!  The first time I saw one was in 2003 when I first experienced the 'strange' overwhelming tiredness like nothing I'd felt before. He gave me a strange look and dismissed me with a "we all get tired" and that was that.  So my faith in them is yet to be restored. 

However I will go along with it as I'm wondering if my GP is concerned she could be missing something more serious and would rather they agreed with the B12 treatment first.  I think that is possibly what she was trying to say.

What bemuses me somewhat is I've had numerous serious neurological symptoms for years and have been re-referred  to my last Neuro again, with an appointment next week, but even the reference to these on the new guidelines, of which she (GP) now has a copy, don't seem to help them join the dots.

After all that what I want to know is whether anyone thinks an Endocrinologist is the way to go and could be helpfull in diagnosing possible B12 deficiency as in absorption problems. Has anyone been diagnosed this way?

I'm going to push the trial injections idea with the neuro too.

In an ideal world these people would talk to each other- but they don't.

I've rambled on a bit but I'm very tired and hope it all makes sense but you are all always so helpful and reassuring.

[Sleepybunny]

Hi,

Good luck with your endo appt. I took any appt I was offered...in my case i had to ask for virtually all of them.

If you go, it might be wise to be well prepared with B12 info/documents as some endos may not be well informed about B12 deficiency . The endo I saw would not consider the possibility of B12 deficiency but did order some blood tests I hadn't been able to get from GP. It can be harder to get copies of blood tests from hospitals. It can be helpful to make it clear that copies are required at start of appt.

Some people find it helpful to take someone with them. My experience is that sometimes medics are kinder if someone is with the patient. It can be helpful to have a witness or someone else to ask questions esepcially if having a brainfog day.

I believe some people on this forum were diagnosed by a gastroenterologist.

"In an ideal world these people would talk to each other- but they don't."

I agree with this comment. I've often complained how it seemed that not one of the medics I saw was prepared to look at the whole picture. Not sure if it would have helped me if they talked to each other as for many years my problems were written off as being depression or psychosomatic whoever I saw.

[Sallybones in reply to Sleepybunny]

thanks Sleepybunny. I've already sent the neurologist a copy of letter and b12 symptoms (PA list) that I sent to my GP, ahead of my appointment next week. I may do the same with the Endocrinologist one but no date for that yet.  I did ask for Haematologist referral too but if no luck with the other two I will ask for  that again.  In fairness to GP she hasn't totally given up on me but I think I will end up trying self injecting eventually as yet another summer is lost to me.

[Retren]

Dally ones I live in the US my spouse was a prominent Endocrinologist and if something was a puzzle was not too proud to consult colleagues In fact did so when my blood was analysed.I wonder how far some of the trading goes these days and the restrictions that are in force?I now take sub lingual methylcobalomine which keeps me comfortable and purchased over the counter,it is like taking multivitamins and has warded off PA,s symptoms.

[Sallybones in reply to Retren]

Hi Retren thanks for taking time to reply.  We seem to have lots of non sensical restrictions here. Logic gone too.

[Gambit62 Administrator]

B12 affects a lot of the bodies systems so in theory referals to endo - which is to do with particular organs that are key in the immune system - is a possibility as lack of B12 does affect the immune system.  There is of course no guarantee that they will be able aware of B12 but lets hope the one you see is.

[Sallybones in reply to Gambit62]

I always try with choose and book to get in with the nearest teaching hospital 20 miles away, as our local hospital is not where one would stay to further ones career if you know what I mean. I live in a market town and our health people couldn't conceive of the idea someone may get something a bit out of the ordinary!  I realised some time ago you have to be really proactive in getting the right help.

[MariLiz]

I can only speak from personal experience, but I saw an endocrinologist privately because of my thyroid problem. When I tried to speak to him about my Pernicious Anaemia he wasn't in the least interested, and dismissed the whole topic with a wave of his hand. I was pretty annoyed as I was paying for his time. In my view several illnesses that are autoimmune are linked, and I thought he might have a useful opinion. He didn't. I have been diagnosed with underactive thyroid, Pernicious Anaemia and Fibromyalgia. 

I hope you find a helpful endocrinologist. Has your doctor suggested a haematologist or gastroenterologist as I believe these might be more helpful with low B12 issues?

[Sallybones in reply to MariLiz]

Hi MariLiz I was fobbed off with Fibro several years ago. A lovely physio told me it was rubbish and that they tell you that when they don't know what is wrong with you. I have too many symptoms for that.

[Sleepybunny in reply to Sallybones]

Hi Sallybones, Mariliz

Yes, I got fobbed off with a diagnosis of Fibro too. Have never been offered physio though.

[Sleepybunny]

I gave my GPs the Symptoms checklist from the PAS library section with all my symptoms ticked.

pernicious-anaemia-society.... See Symptoms Checklist

Fbirder has a useful summary of mainly UK B12 documents. If you pm him or search for his posts I'm sure you will find a link. I plan to give my Gps a copy of Fbirder's summary next appt.

I also gave GPs a copy of martyn Hooper's latest book

"What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" which was published oct 2015 so up to date with BCSH Cobalamin Guidelines.

"What bemuses me somewhat is I've had numerous serious neurological symptoms for years "

I'm sorry to hear how hard things are for you. I had numerous neuro symptoms..absolutely no interest from Gps..too busy saying it was depression. In the end I worked out from symptoms and blood tests that b12 deficiency was likely...still no interest from majority of consultants I saw. In the end I was forced to self treat and some of my neuro problems have gone.

Untreated or inadequately treated B12 deficiency can lead to permanent neuro damage. I believe some of my symptoms are permanent. I am surprised that with neuro symptoms they are not considering a trial of B12 injections for you.

Have you spoken to PAS? lifetime membership costs £20. They can sometimes intervene on behalf of members.

pernicious-anaemia-society.... 01656 769 717

Apologies if i've asked you in one of your other threads but i wondered if you had been tested for Coeliac disease?

coeliac.org.uk/coeliac-dise...

[Sallybones in reply to Sleepybunny]

Hi again Sleepybunny sorry forgot you had sent 2 replies. Had a blood test only by GP for Coeliac years ago. I think no inflammatory markers at the time. I did my own Yorktest one and they told me to avoid gluten, wheat, lentils and mustard seed!  I was never really sure if they were accurate but I've had spells of being G Free and perhaps feel slightly better but nothing to write home about.

I have joined PA after speaking to Martyn. What a star.

While all my body is affected, I already think I have permanent damage on my left side. All my left side has been seriously affected for at least 10 years and gets weaker and weaker. Muscle atropy and movement on that side is most peculiar from the top of my head to the tips of my toes.

Anyway I will plough on but I can see I will end up self injecting as I've no confidence in any of my consultant appointments. I hope I am wrong.

I was wondering which of Martyns books to get as I can only afford one at the mo. I have Sally Ps book. His latest looks the best bet probably?

My local library has none on PA or Anaemia but I borrowed Dr Sarah Myhills book (Chronic Fatigue Syndrome it's mitochondria, not hypochondria) and a lot of stuff in there is very relevant. She includes PA and Anaemia plus lots about how our bodies work and what they need to keep the wheels oiled. Her website is also excellent.

I may request one of Martyns books through my library then others on low income can benefit too.

This site is such a comfort when I just feel like I'm on my own and no hope and no one doctor is just willing to show some intelligence.

Thanks so much.

[Sleepybunny in reply to Sallybones]

Hi,

I'd agree that his latest book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency" is the best bet because it is up to date with recent guidelines.

 I also found his book "Living with Pernicious Anaemia and Vitamin B12 Deficiency" worth reading because I could recognose a lot of what I had gone through in the case studies.

I haven't got a copy of Sarah Myhill's book. I wanted to get tests through her website but she hasn't been taking on new patients for a long time.

Coeliac disease.

People who test negative on standard Coeliac blood test can still have Coeliac disease. If Coeliac type symptoms continue after a negative test then there are other investigations a GP can do....this didn't happen in my case. A person who is IgA deficient will not produce the normal Coeliac antibodies.

coeliac.org.uk/coeliac-dise...

piduk.org/specificpidcondit...

[Sallybones in reply to Sleepybunny]

thanks for the book recommendations Sleepybunny.

[Retren]

9 May I am so sorry to read about the frustrations regarding physicians. It might all be attributable to not keeping up with latest advances.On the other hand I don,t know wether they have computers in their examining rooms like in the US?.so should have it all at their finger tips.I am very fortunate in having excellent care from my medical practitioners so have thank goodness not encountered any of this.and when my spouse was alive professional courtesy was leaning backwards.