The Future looks Bleak

[Geordi]

Hi Everyone, and thank you in advance.

I recently had the good fortune of seeing a new GP at our surgery, omg what a breath of fresh air. She listened and looked at my pre/post and current history. All of which lead her to believe I have a "real" problem going on.

For years my original GP has just tested for my hypothyroid condition and ignored everything I have told him, to the extent that he told me to "go get some sun" I did not know whether to scream or cry.

The new GP ran loads of test especially for IF, B12 etc. when all the tests came back she was uncertain so she actually passed all my details to a haematologist for advise, a GP who actually admits she doesn't know everything !

The haematologist advised B12 at 3 monthly intervals, of which I have had my first. Also advised that although my IF was negative, the test is not effective. The new GP told me I have pernicious Anaemia (without a positive result but all the symptoms and family history confirm it).

She said I have Auto Immune Disease and she actually apologised that I had not been treated correctly, she even went so far at telling me to find another GP, to my shock and despair she is leaving. She told me many of my other problems may all be linked to this i.e. hypothyroidism, parathyroidism, spine & neck problems could be Ankylosing spondylitis.

The new GP told me that "my quality of life" is not very good and the possibility of further health issues must be monitored.

I am off to have pain block injections in my neck and lower back on Monday, I had a replacement disc at C5/C6 almost 2 years ago, but the pain has never abated. I am asking my pain management consultant on Monday to refer me to see a specialist in immunology.

I now feel abandoned, given a poor prospect for my future health and as its such a vague and relatively unknown condition the lack of understanding, care or empathy is non-existent.

Thoughts, comments or just some kind words would all be appreciated.

Dawn

[clivealive Forum Support]

Hi Geordi if on your notes you are flagged as having Pernicious Anaemia then any doctor you go to should know that you are on injections for life.

However "The haematologist advised B12 at 3 monthly intervals, of which I have had my first." should have advised injections in accordance with the BNF Guidelines,

Treatment of cobalamin deficiency

"Current clinical practice within the U.K is to treat cobalamin deficiency with hydroxocobalamin in the intramuscular form outlined in the British National Formulary, BNF,

Standard initial therapy for patients without neurological involvement is 1000 μg intramuscularly (i.m.) three times a week for two weeks.

The BNF advises that for Pernicious anaemia and other macrocytic anaemias patients presenting with neurological symptoms should receive 1000 μg i.m. on alternative days until there is no further improvement.

However, the GWG recommends a pragmatic approach in patients with neurological symptoms by reviewing the need for continuation of alternative day therapy after three weeks of treatment

"

Are you saying you have to wait three months before your next injection???

[Geordi in reply to clivealive]

Yep, the haemotologist said I didn't need a "loading dose" as my b12 is not below range but very near and having had tablet form B12 etc it continued to reduce lower, I have been tracking my bloods for years due to my thyroid problem and parathyroid which my previous gp ignored even though I was recommend d to see a endo by the consultant urologist who treated me for blood in my urine and suspected kidney stones.

I feel like absolute rubbish more 80 than 50 if this is it god help me.

I am also concerned as the new go said about monitoring me due to other problems that may occur like MS, diabetes and stomach cancer, I am not a hypochondriac but am being made to feel like one. Terrified I am going to develop something serious

[may61]

i am interested in your neck and back pain just been to docs this morn cos had very stiff neck on one side,six weeks ago .Continued to develop stiff neck and back problems in middle of shoulder blades .Squelching noise when i turn my head/ heat and soreness in middle of shoulders Now a hard lump at top of spine doc says is fatty deposit .But it hard and doesnt move Coming to conclusion may need to change docs Had vertigo tuesday all day really scary.Original problem was B12 deficiency of 132 but was only loaded with 4 injections and that was with neuropathy After finding the lump last night my first thought was rheumatoid arthritis .

[Geordi in reply to may61]

sorry you are yet another worried sufferer. I am not qualified to give an definitive answers only have my own experience to draw on.

My neck pain kinda started with just feeling like I had been reading too long, I went to an osteopath for help with the pain but she eventually wrote to my gp expressing her concern that "something else is going on" after years of struggling to see a surgeon I eventually had surgery to replace a disc which was ruptured. Don't go looking for major problems the surgery is scary due to risks with high cervical discs and my pain is worse now but the surgery to replace a disc in turn can cause problems with the discs above and below the new one.

The pain now is the same but resting head back causes nerve pain i.e. Ants running around under skin on shoulder, stabbing pain down arms and shoulder blades and weakness in grip with occasional tremor in hands.

There were and are no lumps or bumps to show anything is wrong another problem is now I have a metal disc in my neck I can not have any MRI investigations.

Hope this helps,

Dawn

[may61 in reply to Geordi]

I had a sublingual b12 yesterday afternoon slept a bit better Shoulder and neck feel a bit easier and feel like a fog has lifted Don't know why they were cyanacobamin which my daughter has cos she boarder line I know methylcobamin supposed to be better one But hey ho try anything at moment cos really don't like feeling like this

[Marz]

Hi Geordi - pleased to read that things are beginning to improve for you after so many cross-over conditions to cope with.

I have been reading some of your earlier posts on Thyroid UK and saw that you were/are on 50mcg of levothyroxine and have been for 4 years. Is this still the case ? - as I also read that your FT3 had not been tested. 50mcg is such a small dose and testing should take place 6 weeks after starting T4 and the dose increased in small increments until symptoms reduce.

As I'm sure you know the T3 result is very important as T3 is needed in every cell of the body for good metabolism. As you have PA then it is possible you also have auto-immune thyroid - Hashimotos. Have you had your Thyroid Anti-bodies tested ? Do you have any Thyroid test results you could share ? I read that your GP would not test the FT3 - have you considered having them done privately through Blue Horizon - its a home test and I can give you the link if appropriate. Getting treatment that is optimal can make such a difference - as I have found.

I am not a medic - just a Hashi's girl with a B12 issue.

[Geordi in reply to Marz]

Hi Marz

Thank you for replying, my useless GP will not test my T3 I have asked several times he just says it's not relevant, which we all know it is and he won't increase my Levo as "I am within range" that old chestnut grrr.

I have a whole host of results after yet another argument with my medical practice about trying to charge me £5 per sheet of paper, I did some digging around about our rights etc and finally got all my results posted onto my patient access site. I think the whole practice hear my name and just refer to me as the nightmare patient, I am never rude or swear but assertive and they don't like it, but trying to get the GP to listen is another thing.

As I said before my consultant urologist recommended further investigation into my parathyroid but the GP dismissed it and gave me folic acid to take.

I now feel like I have been cast adrift, the decent GP is leaving (don't blame her ) and I am left with the useless one, even she advised me to find a different practice now that's saying something.

I am terrified that my health will deteriorate and/or I will develop other problems. I take omeprazole because of the pain killers I am on but the good GP told me to wean off them to see if my digestion improves. Without them everything I swallow gets stuck in my throat and won't go down, she said if it continues I need the dreaded tube down my neck to see what's going on, also she was concerned as I have lost over 2 stone in weight, the only good thing to come out of all this. My husband says it's no wonder as I don't eat, everyone moans at me for not eating but I am just not hungry.

Sorry for going on and on, what a moaning Minnie, I am not sure if my thyroid anti bodies have been tested, and I have frequently thought about the blue horizon tests but I never know what one to get, I feel there is so much wrong with my body, perhaps I should just order one of each!

The prospect of developing more problems has me terrified especially diabetes, MS, and the dreaded C word, but I know something is getting worse my bones ache my muscles ache even drying my hair or searching through my wardrobe makes my arms hurt, like when you hold something up for a long time, cramps in my hands and feet, back and neck pain, and the list goes on.

If you have any idea what blue horizon test might help me please guide me as I'm hoping to get a referral to an immunology specialist even if I have pay for it.

Sorry to go on so much

[Marz in reply to Geordi]

thyroiduk.org.uk/tuk/testin...

The most popular package is Thyroid 11 I have read.

Your Low B12 could be the cause of your swallowing issues. Also LOW VitD can cause aches and pains.

How long have you been taking PPI's ? They can inhibit the absorption of B12 as well as other vitals I have read.

Do hope you soon feel stronger.

[may61]

I am finding it hard to believe that doctors in this country leave patients to struggle on ,dismissive and so unknowledgable about this situation It must cost millionssssss just cos they don't listen to patients ,who then progress onto other nasties. Anyone like me who is just starting out on this road having only been diagnosed in July looks like we have a long road ahead of us. Like you I think shall I find another doc but what if they worse Keep positive have had to fight for my hubby who is bipolar and if someone can help you do that it does help cos I finding at moment haven't got the energy to fight Keep in touch on here cos it helpful to hear other people's moans and groans , see if they same as ours , and when you have board your family to death about this topic, it another outlet and others are interested cos we in this together kind regards

[Sleepybunny]

"Yep, the haemotologist said I didn't need a "loading dose" as my b12 is not below range but very near and having had tablet form B12 etc it continued to reduce lower,"

Surprised that the haematologist said this . Have you looked at page 8 and page 29 in the "BCSH Cobalamin and Folate guidelines"? Page 29 is a diagnosis and treatment flowchart that outlines process UK doctors should follow with patients symptomatic for b12 deficiency. I suspect that the haematologist may not have read the BCSH Cobalamin and Folate Guidelines. page 8 outlines UK b12 treatment.

I gave a copy of this document to my GPs along with a copy of Martyn hooper's book "What You Need to Know About Pernicious Anaemia and Vitamin B12 Deficiency"

"The new GP told me I have Pernicious Anaemia"

If you have a confirmed diagnosis of PA then the PAS(Pernicious Anaemia Society) may be able to intervene on your behalf if you join. Has the haematologist confirmed this diagnosis in a letter to GP?

pernicious-anaemia-society....

PAS tel no [phone]

Examples of how PAS can help members on Martyn Hooper's blog

martynhooper.com/2016/10/24...

martynhooper.com/2016/09/23...

I am not a medic just a person who has struggled to get a diagnosis.