Dr suggesting me/cfs or depression

I saw my gp last Tuesday due to some ongoing symptoms that have been getting worse over the last few months, extreme fatigue, pins & needles in feet, clumsiness, blurred vision, difficulty using my phone (texting etc causes weakness in my hands) I queried iron or b12 deficiency (iron due to heavy periods) a little history with b12, I was told approx 4 years ago I had b12 deficiency after seeing my doctor due to feeling extremely wiped out all the time. I was given loading doses then a couple more injections, I can't quite remember the time frame then I was told my levels were back to normal and I no longer needed the jabs, no further investigation into the deficiency took place. I didn't know anything about b12 at the time and trusted my doctor so never questioned it. I was pregnant at the time, I have since had 2 children and assumed the exhaustion was due to motherhood but since my children have been sleeping better and my fatigue getting worse I started wondering whether something else was going on. When I had bloods taken I mentioned iron and b12 to the nurse who suggested I should never have stopped injections in the first place so assumed it would be b12. My results came back and both in normal ranges, I don't have a copy of my results but the doctor said b12 was good at around 500pmol. He said there is absolutely no reason to think it is b12 deficiency and suggested we think about depression or chronic fatigue syndrome. I shot him down about the depression, I've suffered from depression in the past and can recognise the signs. I know very little about cfs but the symptoms all seem quite similar. I can't shake the feeling that it is b12 as the way I feel is so familiar but is fatigue just fatigue whatever the cause?? I suggested active b12 and to his credit he did say he would contact a heamotologist. I did mention that I was taking a multivit when the bloods were done but he didn't feel this would have any significant impact on the results. I'm not sure what I'm hoping to get from posting this but felt I had to put it somewhere where people may understand what I'm going through. I'm seeing my gp again on Friday to discuss next steps but he's already pretty much dismissed b12. I also have trigeminal neuralgia but don't think there's a link as I was diagnosed with that about a year before the b12. I'd appreciate any insight into anyone's similar experiences and outcomes. Thanks KJP

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  • Sorry for the super long post

  • There is one sure fire way to find out and it'll cost the Gp very little compared to the potential costs of it isn't.

    A load of b12 again.

    They're supposed to go off the symptoms not numbers on paper.

  • Perhaps ask your GP to test MMA and Homocysteine levels. I understand they are raised if B12 low. Also, has he checked your folate, thyroid levels?

    Good luck

  • You sound like you have B12 deficiency, borderline for neurological symptoms. I have it and also trigeminal neuralgia, horrid, have you heard about the potential new pain relief treatment that targets the trig nerve and leaves the brain alone? 30% reduction in pain in trials and should be available in 3/4 years, can't wait!

  • I know you were genuinely trying to help but please be aware that....

    Nerve damage pain is a serious symptom of B12 deficiency which can be reversed with treatment in the earlier stages.

    Pain killers, if they work at all, could mask nerve damage until it could be irreversible. Along with dishing out antidepressants it is potentially problematic - covering up a symptom whilst still allowing the underlying cause to progress

    A possible reason for your trigeminal neuralgia is a deficiency of B12.

    I believe you shouldn't recommend painkillers to someone until you can be certain they have had plenty of B12 and supporting supplements for long enough to heal any nerve damage incurred by the deficiency.

    For some of us this maybe at a rate of 2 injections per day and high doses of any other required supplements for months if not years.

    Note: edited by Admin

  • The original poster said they have trigeminal neuralgia. I have trigeminal neuralgia. The usual treatment medication wise is the anticonvulsant Carbamazepine also known as Tegretol. The original poster did not state they were considering/having/had :- gamma knife radiosurgery/microvascular decompression/glycerol injection/balloon compression/radiofrequency thermal lesioning/antispasmodic agents or Botox injections. I was merely, from one sufferer to another, asking if they had heard of the brand new research results involving pain relief. This new medication will not be ready for 3/4 years. I was not telling/encouraging the original poster to take this medication. I would sincerely hope by the time this new treatment is available the original poster will know, if they don't already, the origins of their trigeminal neuralgia. As I, fortunately, sure do.

    Note:minor edit by admin

  • Thanks for replies. I asked for the other tests but he was reluctant without info from haematologist so we'll see what he says on Friday. He said thyroid & folate normal but I didn't get a copy of my results so not sure where they fall within normal range. I'm going to ask for a copy of my results. My husband said to the gp, what's the harm in trying b12 to see if it helps but he said there was no point.

    I'll have to look into the new treatment for neuralgia misslillyskisses I'm currently managing without medication, I haven't taken anything for it since I stopped before getting pregnant as I've been pregnant or breastfeeding since then. I'm lucky that I only seem to suffer for a few days twice a month but it's horrid.

  • TheThyroid Tests that were declared *normal* - do you know what was actually tested ? If it was just the TSH - then that is only part of the story. The correct testing is:- TSH - FT4 - FT3 and the Anti-bodies TPO and Tg. Sadly it is rare to have the correct testing done at GP level and so many people are missed. When you have your results with ranges make a new post so more people will see them - unless you tag those involved in this thread.

    Private testing is available through Thyroid UK website - Home Testing Kits can be sent to your home and results sent to you by e-mail ....

    thyroiduk.org

    Low B12 - VitD - folate - Ferritin seem to go hand in hand with low thyroid and the symptoms so often overlap.

    Hope you have some answers soon and begin to feel better. I remember being at home with two children and falling asleep with them when they napped :-)

  • My very best wishes to you KJP723.

  • Thank you. Hopefully I'll know more in a few days.

  • what was your diet like before you were originally diagnosed as B12 deficient - B12 is only found in animal products so if you had very little meat/fish/egg/dairy in your diet then the source of the deficiency could have been dietary.

    There are a lot of potential causes of a B12 deficiency - things that cause absorption problems - some are treatable - such as h pylori infection - but others aren't so you can be treated and then if your levels aren't topped up periodically you will become deficient again.

    Trigeminal neuralgia can be associated with a B12 deficiency.

    it is possible to to be B12 deficient at the cell level with blood serum levels well into the normal range. This would be abnormal with a level of 500 though becomes less abnormal if you have been treated with B12 shots.

    I am guessing that your blood work isn't showing any symptoms of macrocytic anaemia but if you have an iron based anaemia at the same time that becomes more likely - and macrocytic anaemia isn't present in about 30% of people who have a B12 deficiency anyway.

    there is, I believe some evidence that both CFS and ME can respond well to treatment with B12 ... though whether that is because of mis-diagnosis, or partially down to mis-diagnosis ... Not entirely convinces that CFS is really a diagnosis rather than a label for a group of symptoms that could have a number of courses - one is ME and another is B12 deficiency.

    Hope that you see a haematologist who has a genuine interest in and knowledge of B12 and how it really works.

  • Thanks for your response.

    I've always had a good diet, plenty of meat, fish, eggs, cheese etc so I'd assume diet wasn't the reasons for the deficiency.

    I wasn't sure about the deficiency on cell level or how long b12 stayed in your system after injections as it did seem like a good level of b12 for the way I'm feeling.

    I don't really know much about cfs apart from a quick google search but I'd be really disappointed if he just labelled me with that rather than looking further in to it.

    I suppose I'll have to wait and see what he says on Friday but eager to get to the bottom of it. This is the first time I've made it past kids bedtime in over a week!!

  • Try B12 and supporting supplements and see if that works!

  • I have had a diagnosis of ME/CFS and underactive thyroid for which I take thyroxine. The tiredness and lack of energy got to such a point that I had to stop work. My GP said I would improve with stopping work as I wouldn't keep going through the boon and bust cycle of working and then be off sick having overdone it. The recovery didn't happen and I noticed I was slowly declining. Having done some research I found that there a now a number of tests that are now carried out before a referal to the ME service. I asked my GP to test for B12 and Vitamin D. Lo and behold I was deficient in both. After having a year of 3 monthly B12 injections I have finally noticed an improvement.

    Wish I could get the B12 injections more often to find out if I could improve even more as I am fed up with half a life. I dare not ask her as she said early on that after a year they could stop in injections as I would need anymore. But they never investigated why I lacked B12 in the first place. Crazy.

    I sometimes think CFS/ME is used when they have run out of ideas

  • Thanks for that. That's where I feel I'm at with my doctor, saying I have me/cfs rather than investigating further. I've been declining for a while and it didn't come on suddenly like I've heard with ME. I'm a stay at home mum with 2 young kids at home so I can't even rest properly, when it gets to the weekend I'm too exhausted to do anything. My husband is great but works full time and can't help much during the week. My mum & dad both still work full time so have very little help. I feel my family deserve so much better. I was in a great place a few months ago, eating well, running & doing yoga, taking the kids out. Now I feel like I'm failing at everything and I'm snappy all the time.

    I'm glad you're on your way to getting sorted, could you try adding to your b12 yourself with the spray under your tongue stuff. That's my next step if the doctor won't look further into b12.

    Good luck

  • My ME didn't come on suddenly. I had a winter when I kept getting colds and viruses. Each time I went back to work to soon as there was a lot to do with a deadline approching and then got another bug. Finally I had what my GP said was shingles, don't think it was as only three spots but after that my body had had enough and I was off work for 3 months.

    I then spent the next nine months increasing my hours to full time. But after 7 years of struggling and being pressured to work long hours to solve IT problems and being off sick afterwards each time I gave up especially when they said they wern't giving me a pay rise as I had been off sick.

    When I was tired/exhausted I was also snappy. The trouble is you have a good period think things are OK and do more and then your body says no and enforces another rest. I was very good at doing the boon and bust and always ended up paying for it. I have had a good two months after a bad 15 months but the last few days haven't been so good so just keeping my fingers crossed and might increase my B12 sublinguals.

  • I just wanted to say that my fatigue and early neurological symptoms started in the low 400s pg/ml. By the low 300s a year later, I had full-on neuropathy, balance issues, cognitive decline, etc, and was so exhausted I was bedridden. So it does happen in the "normal" range. My gp didn't catch the anemia because I had both b12 and iron deficiency anemia.

    My doctor keeps my levels between 600-900 now, and even that's not enough to really feel well and get neuropathy relief. If I miss a shot by a few days all the symptoms come roaring back.

    So it definitely makes sense to me that you could be suffering from b12 deficiency, and likely other deficiencies too. Even though your levels are in the normalish range.

    I think ME/CFS is just a sort of bucket they put patients in when they don't know what to do and don't know to look closer. I just don't understand the logic of a doctor saying it's not b12, it's ME. What is ME besides a list of symptoms? The symptoms are real, certainly, but labeling them ME can in some instances prevent doctors from looking closer.

    I recommend going to the PAS website and reading all the sources there. I bet something will click.

  • I have lots of damage as a result of a ME/CFS diagnosis and consequently 20 years without the right treatment and hence I have needed extremely high levels of B12 and supporting supplements to get the improvements needed to be able to live acceptably again. I wonder how many others out there are in the same situation?

  • Hi. I was diagnosed with cfs/me (terms are now interchangeable) even though my B12 and iron was low at the time. This wasn't sudden onset either (50% of cases aren't). You can have cfs and B12 deficiency, in fact most of the research shows that many cfs symptoms are a result of mitochondrial dysfunction and blocked methylation which cause deficiency symptoms in a number of b vitamins. It probably is a bucket diagnosis for some but is a real disease. Either way your doctor should treat the B12 and folate iron if these are low. I hope you don't have cfs since you have a better chance of treatment from the gp if you have pa and they are less likely to send you to a mus clinic to be given a course on mindfulness and a session to "re-evaluate your false illness beliefs". The doctor told me to self treat with B12 since it was supposed to help with cfs. I started with sublingual tablets but I now use B12 subdermal oils which are almost equivalent to sc injections (take a spray in the morning and spray at night) this has improved energy and brain fog a lot but I still have numb fingers and toes and still can't run have restricted use of energy etc.

  • Got labelled with CFS for years although I tried to ask several times about b12 deficiency.

    Links about PA being misdiagnosed as CFS

    b12deficiency.info/misdiagn...

    martynhooper.com/2015/08/04...

    ME/CFS is a real physical /neurological illness but sadly sometimes people are diagnosed with it when they actually have another condition eg PA, thyroid problems and other conditions.

    Once diagnosed with CFS all efforts to find out the cause of symptoms can stop.

  • Note: some responses on this thread have been edited to remove comments that could be seen as argumentative.

    This post is now closed to further comments.

    KJP723, please feel free to start a separate thread if you have any updates.

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