I have recently added to my full house of Chronic Health conditions with tests showing high platelets , abnormal blood cell size , severe Vitamin B12 and Iron deficiencies and severe Vit D deficiency.
I have just had the tests for Intrinsic Factor antibodies , folate , autoantibodies and Coeliac
( despite the fact that I have had four negative Coeliac blood tests and one negative Coeliac biopsy in ten years,if you ever wondered where your NHS money was going here's a clue when doctors repeat tests for the same thing instead of looking for other causes of a patient's symptoms by actually testing for illnesses apart from the more common ones)
Having had many years on the Diagnosis Treadmill for my other conditions ( Ehlers Danlos/ Fibro/ Chronic Dysautonomia from S.N.R.T/ CFS / CPS to name a few ) , my experience taught me to take on the GP and get my injections started as soon as my tests were done explaining that my nutrient rich diet, and the supplements I take each day , are proof oral treatment won't work for me and they should not delay on treating me because my Neuro and Cardiac conditions have got worse.
At first , I thought that the increase in slurred speak , blurred vision ,tremors , tachycardia ( palpitations,chest pain , numbness and loss of body control was happening because my Dysautonomia was flaring.
I thought the pain increase and more dislocations were happening because of a Fibro / EDS flare , possibly because I had seemed to put on a lot of weight.
I had asked my Cardiologist and my less experienced GP about it , as the feeling was more like that when I had deficiencies in the past and not quite the same as I usually experience with my other health problems.
As ever , when you speak with a Doctor or Consultant whom is less interested ( or well read) in less common or multi system illnesses I was getting the usual brush off that it was probably caused by Fibro , or EDS. or anything they weren't in charge of treating me for.
If I hadn't had to have my routine blood tests done to monitor how my drugs affect my liver I wouldn't have been tested at all .... Until I'd ended up in an Emergency room , I fear
I had mentioned the weight gain to all of them , as it is uncommon for me , and especially at the speed it happened . I thought it was important to bring up as it can be a sign of worse heart and neurological problems in people like myself,and often a commonly overlooked early sign f heart disease.
The weight gain was rapid ( one and a half stone in about 5 weeks) and unexplainable as my diet hadn't changed , and I'd actually been able to start increasing my activity .
(In fact, I supporting my husband, a Type 1 Diabetic , and taking part in what may be my last big physical challenge , in doing a three month ten thousand steps a day challenge to raise money for Diabetes UK.)
Not only did I gain weight rapidly , but the weight appeared as fat , deposited in less usual places for me , on the stomach , bottom , chest and upper back. My arm and leg muscles actually began to get smaller and weaker despite the exercise. All of this , as my appetite was actually shrinking and my meals got smaller.
I am just wondering how many other diagnosed PA , or Vitamin B 12 deficiency sufferers also remember having a rapid weight gain as part of their early symptoms
Or , is it more common to suffer weight loss ? ( in which case maybe my Autonomic condition is doing things in reverse again!
I would like to hear from everyone , new sufferers , experienced sufferers or health professionals and if you can advice me on any links I can read that would be great too.
Take care everyone in the heat and don't forget your water , Bee
Written by
Blearyeyed
To view profiles and participate in discussions please or .
Hello BeeSorry to hear this. I am not medically trained, but have functional B12 deficiency, plus autoimmune things going on, and muscle / connective tissue problems too.
If your diet hasn’t changed, and your activity level has been good, then there is clearly something underlying going on.
Could you be retaining excess water? I have quite a swollen upper abdomen, and on the occasions I have been prescribed diuretics I tend to lose up to 7lbs in water really quickly (mainly from my upper abdomen). I think you should definitely make your cardiologist look into it some more (as excess water can be heart-related).
I’m not sure of your age, but for me, all of my various symptoms worsened with menopause - could a hormonal shift be contributing?
Also, if I was you, I might ask for a referral to an endocrinologist, to rule out any problems with your thyroid, adrenal and pituitary gland function, as these can result in a body shape like you describe (thin limbs, heavier trunk).
A mutation in the AIRE gene (autoimmune regulation) can cause problems in a wide range of glands and organs, including B12 deficiency and PA, so these things can all be linked.
Thank you so much for your reply.I have an upcoming appointment for Genetic Testing after my long waited for EDS diagnosis and I was asked to find other issues that they may gene test at the same time.
Getting to the point of my current diagnoses, I have been able to rule out thyroid , adrenal and pituitary issues, but your suggestions are great for people that are just starting to be examined so I hope many people read your reply.
The Dysautonomia type that I have means , unlike most healthy people , I have to eat more salt , and drink more than the recommended water a day to retain water at all. That's the topsy turvy world of living with Autonomic dysfunction.
You are right though. people should definitely consider water retention and get kidney function tests if they are becoming bloated and have swelling joints , hands , feet and ankles.
Because of the effects of Ehlers Danlos on gynaecology , I actually had to have a full hysterectomy ( including ovaries) when I was 40 and I had to go on the HRT alternative pill until I'm 60 to reduce the risk of osteoporosis. So I haven't had the affects of menopause yet . Although , again , I hope others read your reply because it is true that weight gain can happen in Menopause because your eostrogens reduce and that's what can cause weight increase and fat distribution on your chest and tummy.
For the men , aging reduced testosterone and increased eostrogens in the body can also cause the same weight gain in fat on the tummy and chest.
The Male Menopause does exist , it just isn't as obvious , or men's health issues aren't linked by Doctors together in the same way as women's are.
Sometimes that's a good thing as something isn't missed by a Doctor whom just assumes a symptom is menopause without checking it.
Often , it's a bad thing as men can get a lot of issues at once that could be helped with hormone testing or diet changes but it's rarely done and men talk less with other men about their health and physical things that commonly trouble them.
The weight definitely appears to be fat , and it's distribution is much like it was when I put on weight during taking steroids years ago.
It sounds like you have also been overly blessed in the chronic illness lottery.
Out of interest which Connective Tissue issue do you have , if you don't mind me asking?
Whatever it may be , these autoimmune and connective tissue illnesses may not be visible on the outside , and the doctors often brush off how bad they can be because of that , but they actually affect every part of the body that has connective tissue in it ( just about everything in other words).
Take care and thanks for the really helpful reply.
Thanks, BeeI have not managed to get a diagnosis for muscle / connective tissue problems (despite lengthy efforts (neurologist & rheumatologist)) - I have joint contractures (mainly hands, but I think ankles are also affected) and very focal, mild, muscle weakness. I also have some other (more minor) connective tissue things - but I expect I probably don’t meet the threshold for number of symptoms to get an EDS diagnosis (I have heard there are hundreds of types of EDS!). I have lots of internal things going on too (and have a single mutation in the AIRE gene).
There are 13 main types of EDS , but 90% if cases are Hypermobility or , Classic or Classic Like, like my daughter and me.
If you don't meet the criteria for EDS you can have Hypermobility spectrum disorders which can be as bad and complex as EDS. In fact , because if their lack of knowledge or interest ( probably because it can't be cured ) most doctors will tell you the are both the same which isn't really true at all.
It took me four years of trying and searching to go from my severe GHSD diagnosis to the EDS one when I finally printed off the very simple test and check list of Hypermobile criteria to my GP and said , can we get this done.
I pointed out that there is a general UK protocol now that Rheumatologists won't see people anymore for a hypermobility assessment and no other Consultant wants to take responsibility for it either , probably because they think it is hard to diagnose when it's actually very easy.
Took the time of a normal appointment and because
I had also printed off the measurements for skin for the Classic types he could simply do that too.
It's worth going to the EDS website and looking up the 2017 criteria and getting it checked by your most useful GP.
EDS and HSD , as well as other connective tissue disorders do cause lots of extra muscle weakness problems and are linked to Fibro and various Neuropathy is a more common risk if you have them.
It may be an " invisible " disability but connective tissue disorders can cause many different problems and be as disabling as something you can see. Let's face it most of the body including the circulation system is made with connective tissue.
There is a variety of Connective Tissue Disorders called , Mixed Connective Tissue Disorder , and the starting point to look for that is to get some simple blood tests. It often includes peripheral neuropathy, the hypermobility is more common in the hands , ankles and gut and it involves a lot of muscle weakness. You could look it up and ask for the tests for that too. The autoimmune connection may also have a link to MCTD.
That is so helpful, thank you so much for this! I will definitely look for the criteria on the EDS website, and will also look at MCTD. I am still on my diagnostic journey, but am running out of steam! So this is good motivation to try a different tack. Thank you! And I hope you manage to get some resolution with your issues too…
Yes, it does take the wind out of you. I'd been undiagnosed and misdiagnosed throughout my life . It felt like full time work getting to the point I am at now and took about 15 years if trial and error.My 50th year gift was finally getting my EDS diagnosis!
I often say , " There's nothing that makes you feel more ill than trying to get well."
And when you regularly get gaslighted or discharged by Doctors and Consultants , not because there is nothing wrong , or because they think it's psychosomatic , but because on the day of the appointment you aren't getting the symptoms it can actually make you feel much worse , or you give up until it gets worse than it needed to be. It is possibly the worst Negative Stress a Chronic Illness sufferer has in life , so it is always ironic when they ask you , " Are you having any Stress at the moment?"
( Yes , speaking to you is what I'm usually thinking)
I learnt to write a symptom diary , and take photos of visible symptoms so I have enough evidence to prove what I said was happening , they can't dismiss what they can see with their own eyes.
The diary also helps so I don't forget what I needed to say or wanted to ask because of brain fog or the nervousness of the day.
You can write a summary of what has been happening and you most common symptoms to take with you too and tick off the questions you want to ask as you go.
I even took photos of me doing the Beigton and Brighton hypermobility tests so I could show them and say it would not take as much time to test me.
It's a terrible thing that we seem to have to become Medical geniuses if we have a lot of things going on , or have delays until we find forums like this to get advice but it does help in the end to learn enough about your Illnesses.
It's important if , for no other reason than, to make sure you don't take the wrong advice when given by a Doctor or Physio whom actually knows little about what you have , which happens quite a lot even if your condition comes under the umbrella of their Department.
Thanks so much for this.. I’m 20 years into the journey (having been batted away into the long grass a number of times along the way).
I think if symptoms are variable, or episodic (eg muscle weakness) that is a killer, as when you are examined it is always ‘normal’.
I also suspect that if one is an older, overweight female (as I am) then one’s evidence is seen as less credible than it might be. I have received really major knocks to my confidence and self-esteem in the past because of that. Never mind!
You deserve better sweetie , Just as I did , spending more than year tortured by gall bladder infections because at the time I was "too young" and "too thin" to have gall bladder problems.
As I say now about illness , the human body doesn't read medical text books or doctors tables , and even if it did, it wouldn't take any notice of what it read.
Everybody's different there is no " one size fits all" to health or its treatment.
They are never satisfied no matter what size or age we are , in truth , it's really just what the less well qualified or experienced professionals use to explain your troubles to cover for the fact that they don't know what to look at next.
I gained 20 lbs and got written off. I thought it was due to the lack of activity. Get your b12 levels up, check your folate levels and all other b vitamine levels especially b1. Then worry about your weight. I am now more active, more energetic after 1.5 years of EOD/ED injections and dosing high b1.
Also watch this: youtube.com/watch?v=m3DopqT...
B1 got me past the brain fog and helped with energy level but it is tricky to do high doses. I'm on keto so I already do all the b1 high dose protocol of high sodium and potassium intake; thus I never had any problems dosing b1. I think this especially applies to me because I have been insulin resistant all my life. I now treat this with keto but the b1 was also needed.
Thank you for the advice.I wasn't worried about gaining weight in the sense of how it looked. I've got used to being laughed at for being underweight because of my health problems for most of my Life so funnily most of my friends were telling me how healthy I looked!!!!
My weight gain worry was obviously because of how quickly it turned up with no change in diet to cause it.
As I have a medicated cardiac variant of Dysautonomia I always need to be careful to spot changes that may mean that I have reached the point that I would need an operation if heart dysfunction had got worse.
The weight gain in funny places was one of those things I was told to report which was why I was quite surprised that the Cardiologist brushed it off.
My follow up appointment was over the phone though , and I think he may have been a lot more interested if he had seen me face to face. That is one of the downsides if appointments still taking part by phone after COVID in the UK.
It is looking like the B12 deficiency is going to be caused by malabsorption because of how my connective tissue disorder can affect the way the gut works. My diet is very good and I take high dose oral supplements , so in reality these deficiencies shouldn't have happened with the levels I am on already if my body was actually processing all the lovely stuff I was giving it.
Do you think your weight gain could have been partly caused by the low B 12?
Do you think you were less active because of it too?
It was absolutely due to the b12 and b1 deficiency. In my opinion my metabolism was really slow and zero energy. Bed ridden. High heart rate when idle, heart palpitations. All gone. Thanks to all the help of my doc and this forum!!!!!!
I lost a lot of muscle too. I complained and no one would listen, they blamed it on my diet soda. Arg! Btw, I quit soda once I started feeling better. I think it was a crutch. When I feel crappy my motivation to do the right thing is gone. So I just held on, allowed myself the space and time to heal while trying to keep my career intact. Scaled back on everything. Was a Bote to my friends. But here I am and the real friends stuck with me. It’s b12life 2.0 reborn. Yes there is hope b12ers.
Yes , it's surprising , often the people whom you thought were your real friends head to the hills when you aren't able to socialise with them in the same old way. I found that people that I was often just aquainted with became really supportive and were more helpful than people I had always been there for.
You definitely sound like you took the right attitude to improving your health by taking the time to pace yourself and heal properly , many people don't and then it can take a lot longer to improve as their condition flares up and down.
Diet Soda is a secret baddie and can actually cause people to put on weight , but when you were low and needed a crutch it was what you needed until you were diagnosed and getting help.
Diet drinks were shown to make you insulin desensitive , as it makes your metabolism start to believe it needs to release insulin and your brain expect food energy , when your body doesn't get the food it expected, it craves more high calorie food .
And you still have that positive attitude looking ahead B12life 2.0, that is one of the best treatments of all for long term health issues.
Unfortunately it was hard to tell for me . My joints , muscles and shoulders are usually tight , sore or very painful because I have Fibromyalgia as well. I had been having a feeling if being squeezed around the ribs and some quick periods of chest pain recently too.It's very hard to spot a new thing when you have as many health issues going on as me , but I had felt I was deficient in something , I just assumed it was Vitamin D as this is common for me.
hey B12life - really interested to view the video you mention above, however the link doesn't seem to be working. Do you know what the title of this video is called?
Vitamin B1 (Thiamine) Deficiency, Insulin resistance and diabetes
I bought his B1 dosing guide and it is fantastic. B1 high dosing is tricky, so I advise doing the research. I am in no way affiliated with this guy, but love the guide. This video is really informative as well.
Between b12 and B1 deficiency, this forum has helped me so much. I have come a long way because of this forum.
When I found out I was B12D I was very overweight. I had thin arms and legs but big bum, stomach etc. I was also a celiac and had type 2 diabetes. I started taking B12 and also started a keto diet and intermediate fasting. I lost weight extremely quickly, over 2 stones in one month. Most of my excess weight must have been water retention. Within 3 months I reached a BMI of 20 and have maintained it ever since. To be honest it is fairly easy. I do follow a good diet and have lots of exercise but I eat loads. I think I probably have a problem absorbing nutrition. But I have no bloating or tummy problems since giving up gluten so I’m happy with the situation.
I think your weight gain must be Edema or something similar. The amount you would have to eat to put on 1 1/2 stone in 5 weeks would be incredible. Unless you force fed yourself chocolate. With luck your weight will adjust like mine did when your body has enough B12 to allow it to work correctly.
Thanks so much for your answer.Yes , although the idea of being force fed chocolate might be something in my dreams , my diet hadn't changed and I'd started more activity since getting my other medical issues more balanced . I think I eat one strip of dark chocolate a week ( unless my husband has been force feeding me during my sleep).
My diet has had to be very good since 2014 when my gall bladder was removed and I knew I probably had absorption problems from the various gut and bowel problems I get , and previous vitamin deficiency problems occurred despite taking high oral supplements.
I have never been overweight , except for a few months again for another medical cause, until this . Actually , my problem has always been managing to put weight on so it was definitely odd to put on weight so quickly without a change in drugs (the only times I put on weight before was when I started certain medications I need and even then each drug only caused 5-7 lbs increase.)
I couldn't use Keto as my husband is a Type 1 Diabetic and Keto can aggravate my Gut Dysmotility and IBS-C but I have a low carb , nutrient rich, high protein Mediterranean style diet which I've adapted for all my health issues over the years . And I had started more activity before the weight came on , the interesting thing is with doing more I should have got bigger muscles but they appear to be vanishing.
Thanks for your help it's interesting to see that it can cause weight gain , and I suppose that isn't surprising as B 12 us so important in processing fats and metabolism.
Just as an interesting bit of I do but not a suggestion, Keto can be done if done carefully with a type 1. There is a doctor in WY, USA that is type 1 that wrote a book on it. It is dangerous for them but it can be done. I definitely appreciate the med diets as the next best thing, esp for those not able to tolerate the keto.
As you say , Keto can be , and is more often, dangerous for Type 1 diabetics and unless the diabetic themselves is very experienced in balancing nutrition and ketones it isn't worth putting their insulin balance in jeopardy by trying it.
I know a lot about nutrition and chronic health problems and I wouldn't want to be balancing that diabetic tightrope act if I didn't have to. It's a diet that takes too much monitoring throughout the day, both in blood testing and urine strips, which isn't worth it when there are so many other healthy alternatives available.
The Mediterranean Diet and portion control is easier and works well for us. It's varied , healthy , nutritious, flexible, and is a diet for Life not just for weight loss: that is a goal to achieve long term.
B12 deficiency certainly seems to have been the cause of my weight spike as I have dropped more than 8 pounds in three weeks already with no change in diet , only the loading injections are the difference to my lifestyle , diet , portion size and exercise pattern.
My husband is on his summer holiday so with more chance of outdoor exercise and more portion control ,by me, for him in the daytime ; he has lost 4 pounds himself last week . The holidays are usually a great time for him to get any negative body changes from his job back under control.
Plus the 10 000 steps a day Challenge we are both doing for Diabetes UK over July to October is keeping him more motivated than ever before. It means that I can get out more consistently as well without feeling the guilt and anxiety of having to ask him to come and walk with me when I know he really doesn't want to ( my Dysautonomia prevents me from going out on my own ).
I've only done 2000 today , I'm going to have to get down to the beach when my husband gets back in. I will let you know if we've achieved it in September when we finish.
Got up to 11909 in the end , many steps were done paddling through the water at the beach and watching the sand Martin's shooting in and out of their holes in the sand dunes. Simple pleasures keep me going.
That's brilliant! I love sand martins, we have them in the banks of the river not too far away. Nature is endlessly, amazingly, joyous. I've just hung out the washing, seen ladybirds and stuck my nose in my favourite flowers x
We are up to over 300, 000 steps now , and the post dinner night walks are bearing rewards as I have seen my first " living" hedgehog in years , and the bats have been very busy because of the weather.
Oh well done you! I love bats although most of the time I'm asleep before they come out. We watch them in spring and are just starting to see them again. Can't remember the last time I saw a hedgehog although Dad gets them in the garden sometimes. We tend to walk in the mornings and have seen deer and kingfishers this week. Today a jay and a squirrel! Always wonderful, whatever you see. Have fun x
You seem to have great knowledge around your conditions and doing so many good things to help yourself - very impressive.
I was alerted when you mentioned thyroid and adrenal issues have been ruled out. I wondered which tests were carried out - do you have your results ? Am afraid testing can be incomplete ....
I was diagnosed with Hashimotos - auto-immune thyroiditis in 2005 at 59 - I have B12 issues due to gut surgery - Gut TB and Crohns involving several operations. You may wish to check out the connection with gall bladder and low thyroid - yes mine was removed too !
Really hope you find answers to your current concerns.
I had the ACTH , Cortisol , Stimulation Test , Autoantibodies and something else for the Adrenal checks. I also had an ultrasound and was having an MRI for lower body at the time to check other things so they checked the the Adrenals too. ( Sorry if I got the letters the wrong way around it was a little while a go and the afternoon brain fog has just kicked in!)
I had , the usually polite back and forth with my GP about the thyroid test and finally got the full 6 thyroid panel including the antibodies , as I had read up before the discussion about it that they usually try and do a basic three tests which can miss if you have an autoimmune issue or if you aren't actually converting properly.
All tests came in mid range.
I can get thyroid swings with Ehlers Danlos and it is more of a risk with the gall bladder removal but I don't appear to have had this issue yet.
I know some people whom have , and it was awful , one poor thing was a teenager and all of her hair fell out (although it has now luckily grown back).
Funnily enough , many of the symptoms I had then , I have now but B12 and Folate wasn't tested .
Thanks for the reply , I hope others read it , as again they are important tests for people to have and health problems to consider when they have B12 issues and big changes in Fatigue and weight.
Yes often only the TSH is tested in the NHS. You mention all your thyroid tests were mid-range. A healthy TSH is around 2 so depends on your range as labs do vary. Most people feel well when the FT4 and FT3 are in the upper part of the range. Antibodies are usually recorded as < in the results. When we're you last tested ?
Do you always have copies of your test results with ranges ? You can then monitor your progress and check what has been missed ! They are legally yours !
I have read the 24 hour Saliva test is more helpful for adrenals - a private test.
That's interesting , thanks I will keep these facts in my notes in case I need them.
The last time they checked my thyroid was 2019 , I probably should get it done again , especially if I don't feel any improvement , I'm sure that will be another verbal tussle with the GP if I want a full panel again. I gave a feeling a full panel will need to be private this time around but there is a good lab recommended elsewhere for tests. They may do the saliva test too.
I do always keep copies of my test results in a file but my thyroid results are in the non current file at the moment. I might have a delay to check it and let you know the figures, oddly I'm feeling more tired after the injection than I did before!
Medichecks is popular with the thousands of members on the TUK Forum here on HU. I have been a member there since 2011. You can check me out by clicking onto my username ! Many of us thyroid sufferers have B12 issues and visit both fora.
Do you take a B Complex in addition to the B12 jab ? B12 and Folate/B9/Folic Acid work together.
I read in one of your threads you had low VitD ? How is it now ? Over 100 ?
I was taken high , but safe , daily oral doses of all required supplements at the right times , and with the right meals to increase absorption. Great diet and lots of hydration . I've learnt how to eat for health and advised many different types of Chronic illness sufferers for years.I'm waiting on my new Vitamin D numbers , as they mucked up the test again but I have suffered with Vitamin D deficiency , and low Vitamin A for years even when the B vitamins and iron were ok. I've had to be treated a number of times for Vitamin D problems despite living an outdoor lifestyle as a land artist.
That's why I'm pretty sure it is malabsorption caused by the effect on the gut of Ehlers Danlos getting worse as the years go on.
EDS can be just like issues like Coeliac and Ulcerative colitis in the way it affects digestion but there aren't any tests yet that can spot its presence.
Doctors never know how EDS effects digestion so when the usual tests come back normal they won't ever join the dots with this connective tissue disorder as they only ever remember that it causes faulty joints and stretchy skin.
PA is one of the more common Rheumatology disorders linked to EDS.
I am going to look further into Thyroid issues too thanks to your advice. I've always advised others in replies and posts in other forums I got helped from , and gave help in , that illness isn't always one thing or another . Unfortunately , often you can have this disease and that disease, and, another disease. Especially with chronic problems that affect all your bodies systems.
Hashimotos also affects absorption of vitals and levels of B12 - Folate - Ferritin and VitD need to be optimal for the thyroid hormones to work well. Especially the conversion of T4 ( storage hormone ) into the ACTIVE hormone T3.
I lived in Greece for 15 years and after several years my VitD was insufficient. This is common with TB - Crohns - Hashi's and other auto-immune issues. I now take 5000 iu's along with important co-factors Magnesium and K2-MK7. I'm sure you know VitD is a steroidal anti-inflammatory pro-hormone - so more than a vitamin. Good website below.
I had looked at Medichecks before , there was another one , beginning with T , it's name escapes me at the moment that the EDS website recommended as well.I think I will probably invest in having my thyroid panel done again , just in case. It will probably be much less stressful than trying to get it done as a full panel again by the GP. Plus , I was hoping to go on holiday for the Summer when my husband finishes school ( a teacher not a student!) still in Wales and I've already had to delay it for a week , and haven't been able to get away for over four years.
I want to be able to do it while I still have the mobility to enjoy the outdoors in the way I like.
I will definitely read the Grassroots link , I know a lot about Vitamin D and how important it is to reducing Pain and Fatigue but you can always learn more.
My original two Vitamin D deficiency episodes had figures well below 100 if I remember rightly ( I will check the figures soon but I've been quite lazy today) I've never had figures much more than 100 even after the high oral doses and going out in the Summer. Much like yourself , my second deficiency episode happened just after the Summer holidays . I know I live in Wales , and we haven't had the best weather in the last few years but we haven't been living in the dark !😆😆😆😆
I've just checked the past tests.First Vit D was 21 and next 29
I had three months of high oral doses then normal daily dose and then I asked for another test at 6 months it had only reached 32.
I took high supplements at 4000iu for a year , asked for my test and they disputed that I needed one if I was having supplements.
I pointed out that I had supplements before and it should have worked but I had still tested deficient so they did it.
Despite the supplements it was still deficient at 39.
I was offered no advice but to keep taking supplements and the ones they gave me were lower than required.
The following year it did reach 83 , low but no longer in deficient range but that has been my highest figure.
The following year they refused my test because I had one good figure despite a return of symptoms.
Then COVID , so I will wait with baited breathe to see if the lab refuses again!
The thyroid test from 2018 first was Free Thyroxine and it was borderline abnormal at 21.9/ TSH 1.42.
Interestingly I also tested low on folates ( 2.1) , ferritin and had a abnormal platelet count at 423 and MCH was just on the high of normal at 33.4
They just said I could be a little malnourished probably because I was underweight despite a good diet at the time. They only tested B 12 one time and in a different test range at that point it was low but not deficient at 203 in a range of 200-770.
Because of parathyroid symptoms in 2019 they did the thyroid panel
Thyroxine was 21.2
TSH 1.65
Free T4 12.2
Free T3 5.4
Parathyroid 6.7
TPO 7
The other figures were on a separate page and I seem to have lost that so I will get another copy .
My cholesterol has always been high for LDL ( 4.6+) and triglycerides 2.4 but each lab comment was that they wouldn't comment as they could not be sure that I did fast. I fasted for at least 12 hours and then 16 hours for the tests. I'm waiting on another test to be returned on Friday. Then the two tests requested the nurse had taken blood in the wrong bottle.
I plan to make requests if it is still high as my mother died recently from a genetic liver condition and they also noted she tested for familial cholesterolemia.
Liver and Bowel cancer were part of her history and her father's. She also had EDS but was never properly tested , and had, had TB as a teenager.
My father was Marfanoid body type but not Marfans Syndrome like myself , which also fits in the EDS profile.
If I look through all of my old tests , there have always been " blips" in MCH/ MCV or platelets and my folate and ferritin tests have always been borderline low or just deficient. They always just told me to have a supplement or considered it was because of inflammation . If you have any advice from this I would love your thoughts.
Gosh that's a lot to take in ! Low Folate can be a problem with many symptoms. Folate is good around mid-range and works with B12 in the body. Are you taking a good B Complex to keep all the B's in balance ? ?
Which VitD are you taking and how ? Co-factors ? Great research discussed on Grassroots Health website including the current virus. You can do on-liine testing for VitD - finger prick test - should be tested once a year and dose adjusted accordingly. I think it is Thriva you were thinking of. Medichecks have Special Offers if you go through Thyroid UK - did you access the link I posted earlier ?
Ferritin is better around 70+ - if much lower then a full Iron Profile should be carried out.
You haven't put your ranges for the Thyroid results - labs do vary. Your FT4 does look low however the FT3 looks reasonable. Tests should be done fasting and as early as possible. When a thyroid is failing it pumps out more T3 to keep things going ! - otherwise it's around 80/20 T4/T3
Cholesterol is not the problem it is made out to be. Even the NHS website mentions that with raised cholesterol the thyroid should be adequately treated before starting a Statin. When B12 is low Homocysteine can be raised which can also be an indicator for heart issues and stroke. I have followed Dr Malcolm Kendrick for many years and read his Blogs ....he wrote the book - The Great Cholesterol Con. I heard him speak at two UK Conferences - Thyroid and then B12 where I also met Sally Pacholok who wrote the book - Could it Be B12 ?
I really do suggest you pop over to Thyroid UK Forum where you may find more information - it's a very busy place with great info. Maybe more joining of the dots for you too !
Yes , I'm going to , to be honest I was checked for Thyroid on those periods and felt that it probably would eventually become a new addition in the future.I'm oddly feeling more tired today after my first injection than I did yesterday , and obviously more deflated than my usual self as I am a bit deflated.
I had hoped when I'd finally sorted out the EDS on my history that I would have come to the end of the diagnosis Treadmill.
It's been a lifelong thing , and felt like a full time job for more than two decades , but appears Life has other ideas.
So , I'm in a bit if a flump today , very unusual for me , I will be back on my stallion tomorrow , after getting my blood results and ready to start again.
You will see me pop up on the thyroid group after I have my private test done for advice from you all.
Thank you so much for helping .
It just annoys me that they don't sensibly test you for full thyroid at the same time they find Vit B 12 deficiency and vice versa .
It's like going to the window and only opening one curtain surely it would be better to have a look at the whole view.
Then at least they could start and combine both treatments at once if needed and patients could have more success getting back on their feet.
Is that the answers about the ranges and type of Vitamin D .I know I should have added the range on when I sent the last reply but I was surrendering to Fatigue at the time. The tests were both done by NHS labs , so it is the ranges that are used in NHS testing.
I am going to get the new panel done so I thought that it would be better to get the new test done and show you the results and ranges from that instead.
As you said , it had been three years since the last test so things could have become very different since then , especially now that this B12 related anaemia gas popped up too.
I will give you company details about my vitamin supplements at the time too. I do have the full B complex, B12, and folic acid as part of my vegan multi vitamin and mineral complex ( I use that one because I react to cyanocobalamin and that uses methyl cobalamin).
I also get B complex/ B12 in a full super mushroom complex capsule . My vitamin D is in three forms , the standard capsule from the Doctor , the vitamin D in my multi vitamin , then a separate 2000iu capsule which also includes Vit K2 and Magnesium making a daily total of 4000iu.
I take a gentle iron supplement with Vitamin C each day too.
I take the D complex with my fattiest meal if the day as it is fat soluble .
Bravo ! Sounds very good ! Multi-vits can be tricky if they contain iron or calcium as it can negate the benefits of other vitals due to binding. I know its a minefield. I take the Thorne Research B Complex and Doctors Best VitD as the gel capsule only contains VitD and Olive Oil ....
I had , had the full thyroid panel but it was in 2019 so as Marz suggested I may need to test again.My daughter also has EDS etc. She also needs to test for POTS.
She was recently tested for Polycystic ovaries and thyroid issues but is luckily fine , it is the EDS causing her gynae issues they are just different to the ones I had.
The effect EDS had on my gynaecology meant I had a full hysterectomy inc. ovaries at 40.
The PCOS often causes weight gain , but a lot of people can help their pain and symptoms with a PCOS diet.
I hope your daughter has got a support group to meet with face to face or online with plenty of people of her own age to talk to so that she can keep smiling.
When you get used to experimenting with food it is surprising just how nice and varied your food can be even though things are restricted.
I do bake really nice cakes and biscuits with gluten free and low or no sugar , and make nice desserts.
Until this I didn't really ever put on weight , in fact , my problem for many years was being too underweight.
I don't miss alcohol , but I am actually encouraged to drink coffee , Dysautonomia and POTs can have very different needs depending on what causes them.
I hope we can all get some balance soon , and no matter how bad my symptoms get for any of my conditions , I'm still going to suck the marrow out of Life as much as I can (in fact isn't marrow high in B12?)
Thanks for your reply it does make me feel more reassured to hear that the weight gain can be part of this deficiency and I hopefully won't need to be tested for something else when the shots start working.
Take care and I hope your daughter knows how lucky she is with a parent like you , Bee
My mother also had P.A. and after a number of years getting quarterly injection, her GP told her that 'you're blood test' is fine and you don't need any more B12 injections.
Both my sister and I thought that was 'good'. Little did we know that without her B12 injections would cause her premature death as she developed stomach cancer.
We had no internet connection at that time and we wouldn't have thought that GPs would give wrong instructions.
I'm so sorry , it is so frustrating when we lose someone we love from something that could have been avoided by proper care.
My Mother died last year from the COVID Effect and lack of proper tests before COVID. She was having symptoms from an undiagnosed genetic liver disease and the doctors had dismissed it as being part of other health problems so had not checked the liver. COVID came and she and I were both quarantined from Health hundreds of miles apart and she could not get access to a doctor or just got phone advice. By the time she had a fall and went into hospital it was too late to treat.
It's why I fight so hard even when I feel like crawling on the floor because I don't want my daughter's to live through what we have sadly lived through.
We all put such trust in our doctors skills and knowledge, and in care of more common or acute conditions it can amazing , unfortunately , it takes experience of getting something less common or long term that you learn the lesson that you can't believe everything as absolute fact. Luckily, most of us learn these lessons before it is too late but they are lessons none of us should have to learn .
Thank goodness we have groups like this and charities with patient forums on now that we can get better info from so we are prepared to fight for our health rights or know when our medical advice could be wrong.
Yes , it's definitely good to know you are not alone and so good for our Mental Health to have access to the support of Faraway Friends on forums like this .Take care , Bee
Very sorry to hear about your mother. It was trying to put the pieces together after Mum's death that really started me down this track. Wish I'd known before she died. The forums are fabulous and the people generous beyond words and thanks.
Yes , I am so grateful at all if the kind responses. Had the first injection yesterday but actually feel more tired and wobbly now than I did before.
I know it can happen , but even I am not my usual , pick myself up , look for the sun , start all over again self today.
Someone just told me to shout " Courage" in my best French accent , which made me giggle and I love it.
But I think I will be standing up first in the air shouting " Courage" , and then lying straight back down again with fist limply raised from the bed shouting ," Fatigue!" straight after it!
I love that! I have to face the GP surgery later, just for blood tests but can't abide the place, so shall be thinking 'courage' followed by 'fatigue' which is definitely more how I feel. I do hope that the nurse is right and by Sunday you are skipping like a Spring lamb!
If you look down at my second reply to Bed well , after your replies , you will see I have just turned it into the first two lines of a poem . I think picking up a pen or drawing a cartoon might be all I can do today ... Oh bum , I gave 9, 000 steps to do too .
Hoorah! No , I was tested but I do have severe Dry Eye Syndrome , Sicca Syndrome ( eye , skin , mouth) and recurrent Anterior Uvietis and a rare issue called Recurrent Aphthous Stomatitis Syndrome (R.A.S.S) which they diagnosed when the symptoms of these conditions sent me to the Behcets clinic in the first place . But I must have been good on my feet and dodged the bullet on Sjogrens Day!!Well , I must be generous and not hog all the diseases to myself.....😆😆😆😆
Yippee!! Glad you missed one at least. (Although it is yet another with lousy/slow/inaccurate diagnosis. They haven't decided with me yet.) One of my autoimmune books mentions about 80 AI diseases and many more AI conditions and includes the American Autoimmune Related Diseases Association's list of 159.....Uvietis makes the list but RASS doesn't although I've read elsewhere that it is and is linked to thyroid (because thyroiditis is a common AI and crops up with many others) but also that RASS can be the only symptom in some of gluten sensitivity xx
That's interesting.Have they given you a biopsy for Sjogrens. Because I'd already been diagnosed with Anterior Uvietis , Dry Eye Syndrome from the Schirmer Test and Dry Mouth the Opthalmologist sent me to ENT.
I pointed out at that appointment that the Rheumatologist and others kept mentioning Behcets or Sjogrens ( whom I never saw again despite constant badgering from other Departments Consultants) .
I basically told them I knew if I waited to have it checked by having it sent back to them I could be waiting until the next moon landing ( sounded like an exaggeration at the time but it happened to be true) and as it was there Department that would do the biopsy anyway could he sort it out so it could be ruled out or added to the list.
He was one of my most useful doctors in my area.
He did the test and also explained all the secret complications of getting referred from Wales across border for me , so he helped me get to the Behcets Clinic after the Sjogrens was negative which got most of my diagnosis done.
Unfortunately, they couldn't continue to do any more tests after it was obviously not Behcets and then delays happened again as the Clinics I needed to go to were cross border and if it costs money Wales refuse to refer over the border even when they don't have the right Specialists themselves.
Prof Moots , at the Behcets CoE , was very sympathetic and frustrated that a distance of 100 miles meant that he couldn't refer me where I needed to go.
But anyway , I would definitely suggest you push to get your biopsy , as it is the gold standard in getting your diagnosis. Just be careful what you eat and drink for a few weeks before as it can change the cell structure. And keep away from smoke or anyone smoking as that can also change cells , even on a secondary level.
I am assuming you don't smoke , but anyone that does needs to stop smoking and nicotine products 6 months before the test if they don't want a false negative . They don't tell people this and obviously many people will have received false negatives because of it.
I only know , because I have a nicotine inhaler (works like the nicotine infused dressings for skin ulcers)as part of the treatment for ulcers and luckily didn't start using it until after reading how the Sjogrens test worked.
That's really interesting, thank you. (Lucky you, being in beautiful Wales, even if you can't get treatment over the border.)
I was referred (this time) to rheumatology in 2016 for possible antiphospholipid antibody syndrome ( commonly part of the 'triad' - APS/thyroid/Sjogren's) and rheum diagnosed fibro (nothing new, had since I was 12 or earlier), unlikely APS, unlikely Sjogren's and they've all ignored the thyroid for years. The Schirmer's was deemed borderline and as she didn't think I had it and was healing really badly she didn't send me for a biopsy. No dental referral then either. No positive lab tests - don't seem to produce antibodies to anything much. (But of course you can be seronegative Sjogren's just like IFab neg PA).
Fast forward to 2019 and rheum no. 3, when I got eye and dental referral but by then I was on anti-inflammatory autoimmune type diet and eyes were measurably less dry (woo-hoo!!) and saliva ok (during day of course, when it is easier to stimulate - still a problem at night). Anyway, due to the possibility I'd bought a book or two and joined the Sjogren's forum on Smart Patients where one useful contributor (to put it mildly) is Dr Sarah Schafer, patient not clinician, but she runs the amazing Sjogren's Advocate website. sjogrensadvocate.com/lipbiopsy The points made on the forum and site have made me think it extremely unlikely that I would get a +ve biopsy as I am predominantly neuro and anyway likely have missed my 'window' as this has been going on for 22 years most probably - misdiagnosis of RSI for Small Fibre Neuropathy. I had the salivary gland ultrasound and that was ok, but I know from the site that some people get the same results with that as biopsy and some get one +ve and one -ve.
Current neuro is still considering but of course there are many other causes of SFN, not just Sjogren's so we are trying to look at all of them. I am very chemical/medication sensitive too so avoiding anything I can avoid, although I am now healing ok.
But in all my reading and digging, I have never heard that about nicotine or diet affecting the cell structure. I don't smoke, never have and am rarely near anyone who does. Any particular other things to avoid if we do decide to try it at some point? Will have to ask about nicotine on the forum! Cheers
I will double check on the article I have somewhere in my files. Pretty sure there was another thing and a couple of meds that affected it but I can't think of it off the top of my head.
I also had periodontal issues and breaking teeth from childhood , again all I would get was criticism and being made to feel self conscious about that by dentists and doctors. Obviously , they never considered EDS effects on the teeth or Dry Mouth.
Half of my adult teeth had to be removed by 40.
As it turns out these things are very common in EDS sufferers as the teeth move in the gums and wear, deficiency reduces the enamel and things like Aphthous ulcers and abscess are more common because of the way the gums let in toxins.
The lack of collagen and connective tissue dysfunction us probably what also reduces the flow of saliva , the ducts are too small and not strong . When they checked for saliva duct stones they noted that very little saliva came out on manipulation of the ducts .
I also have Trigeminal Neuralgia as part of my Neuropathic pain profile , it could really bring me to tears until I got my triggers worked out and a nerve relaxant.
I also had a nasty experience with local anaesthetic back in 2012 when it didn't work and I passed out in the chair when the temporary Dentist just ploughed on and hit the Nerve . That triggered the start of TN.
Every dentist I saw since looked sceptically when I talked about it because none of them know about EDS. It is so annoying , people in medicine should know that certain people do not respond to Anaesthetic, and it should have been enough on hearing that to trigger bells with them to know I could have EDS. At the least , they could have stopped accusing me of being dental phobia and an anxiety sufferer in my notes.
I can't wait until I go to my next Consultant check and point out that none of it was my fault , and show my EDS medical alert card which includes the fact that local anaesthetic seldom works in the tips to professionals.
I have the special lozenges to promote saliva , and I use Biotene toothpaste , it's a special formula for people with dry mouth. My mouthwash is prescribed as many OTT mouthwashes ( and OTT eye drops actually) dry out the mouth. I can't use an electric toothbrush as it causes more movement in the gums , I have to use soft children's brushes. Mine is shaped like a dinosaur.
The Nicotine spray or inhaler trick was one that I was told by some Behcets ulcer sufferers at the clinic. I had already been prescribed some nicotine dressings with silver when I had a phase of arm ulcers too. The dentist had actually heard of it and told me to try it as the tingle begins. It does seem to make them smaller and in combo with the dissolving meds they go much quicker.
Thank you. Wish I could be a fly on the wall when you show the consultant your card. Why do they have to make it all so much worse by not listening and being so disbelieving/rude/ignorant. The dinosaur brush is definitely a silver lining though....All the best x
It certainly raises a few eyebrows when you go to clean your teeth in a communal bathroom at a campsite... But as everyone is very British about it they look and say nothing!
Thank you so much , and thanks for the tip on the way you feel and the dose.I'm going to keep an eye on it as I go in the loading weeks , as with my other conditions ( Fibro and Dysautonomia specifically we can react with more pain and fatigue in the first weeks of having a new treatment until the hypersensitivity reaction slows down and our nerves have adapted to the new functions in the body).
I heard on the news this morning that a woman who thought she had "dry eye" went to the eye doctor after not seeing him in a long time. So, he removed 17 disposable lenses in her eye. Not sure how that could happen.
Weird that the newscaster thought it was funny... . How could her eye survive that.. He said she is fine now.
Unbelievable! Pretty awful response from the newscaster too , very callous . Was it on the BBC by chance. I disgustingly heard a terrible story from one of their female breakfast presenters as she laughed about stuffing paper up someone else's nose when she was at school during a story about a boy who had , had a penny up his nose for ten years.
The Male presenter was very awkward and obviously realised that she was basically laughing at being a bully and she still didn't seem to sense from his behaviour that she should shut up before she destroyed her image as a human being.
Overwhelmed by your amazing postings! I only have the problems and side effects of steroids for polymialgia!!! Which I’m sure includes weight gain. I seem to go up and down like a yo-yo!But would like to say that your name has always struck me.. as blearyeyed is one main symptom which family and friends don’t seem to understand!!!..” have you seen an eye specialist???” Etc etc
Thank goodness for this forum.. in the end it seems we are all left to self medicate!! As gps and rheumys all contradict each other!
Courage!.. said with a french accent! It sounds more dynamic!!!
Hilariously , after a blip of a 7 lb rise on steroids , I then lost 10lb , so I'm one of those weird ones whom lost weight at that time , probably because of the Dysautonomia, it seems to make my body do the reverse of what everyone else's does . Which is why this weight gain was unusual.Well , my Mum always told me to be different!
Your post really made me giggle this morning .
I'm going stand up and shout " Courage" with my best French accent and fist in the air as often as possible ,.. but today I might have to sit back down and have rest afterwards.
The Fatigue seems to have taken over today , which seems ironic after I had my first B12 injection yesterday morning and the Nurse had said , " You'll be running around by Sunday"
Forgot to say , the first thing that brought me to check on HU and get properly on the diagnosis Treadmill was a diagnosis of Anterior Uvietis and possible Behcets , a last straw at the time . Of course then their was the GCA and then pushing for all the other issues afterwards.
Then I had hoped that I had reached the end of sorting out what was wrong with me when I finally got the EDS properly put on my medical history.
Obviously Life thought it would have another laugh there.
I haven't lost my eyesight but I have vision impairment ( tunnel vision , grey spots , light sensitivity, double vision ) often and actually my chronic migraines of the eyes cause more visual disturbances than anything else , including full hallucinations known as the " Alice in Wonderland Experience". As it turns out Dysautonomia and its effect on my mobility and ability to do most activities has had a bigger impact on my life as an Artist now.
" Courage !" she said bravely , fist held high in the air ; then , " Fatigue!" she said limply as she fell back down on the chair .
( Perhaps that should be the first two lines of a new comic poem , at I could lie down while I wrote it!)
I’m sure you know already that EDS can cause vision problems.
I have astigmatism in both eyes which was blamed for a horrendously painful and prolonged cataract removal a year ago. I’m told that the other eye needs the same procedure asap but I’m holding out for a general anaesthetic this time. I have uveitis which flared after the cataract replacement which was done by local anaesthetic and took over 1.5h to do.
Yes , I have astigmatism in both eyes too , it's common for EDS , as is Dry/ Red Eye , blepharitis which I get regularly and Anterior Uvietis can happen more often too. The eye gel I put on at night is called Vitapos A , it replenishes Vit A on the eyelids which helps make the lid oils again.If you can't get Vitapos A then they also prescribe Hylo Night gel , which is also very good.
My eye drops are called Cellvist and they are designed to be as closely like real eye drops as possible. I get them on prescription.
The Opthalmologist ordered them.
The surgery are really annoyed and keep trying to give me Carmellose drops but my eyes are too dry and sensitive for that to work for me. They are in single use bullets!!!
Gel tears is a good start for an OTT eye drop , it's the first line drops that the doctor prescribed.
Then Carmellose solution drops are the ones most people get prescribed and use.
Making sure you put the drop on in the middle of the eye with head well back then close the eyes and slowly move your eyeballs from side to side before you put your head forward again, then repeat the side to side with kids closed in that position before opening the eyelids helps to wet them properly .
Otherwise the drops just disappear to the side and down your tear ducts.
It's good to use them at least four times a day , more in the dry or in Summer and before swimming or exercise.
Lots of drinking water and Vit A , D, C, E in the duet treats them from within.
Slightly warm damp cloth as a compress over the eyes is very soothing too.
And don't be afraid to wear sunglasses in wind or indoors , especially at supermarkets or places with strong florescent light.
Yes, I've been prescribed Vita PosA gel too and it does help - a bit. I'm embarrassed to say that I'm really nervous about having the second cataract removed, but I'm going to insist on a GA this time. I wear prescription sunglasses as much as possible because I'm also very photosensitive with very dry eyes (Schirmer score of zero).
Have you been given your blood test results - FBC, IF, GPC, thyroid screen etc etc? I would be interested to see them, if you can muster the energy to post.
Could I also ask which genetic liver condition runs through your family? It sounds interesting (OMG - how I hate that word) and might just help explain your raised platelet count, which is a most unusual finding (I'm beginning to also hate 'unusual'). I've had lots of issues with my liver, which seem to be less problematic these days. Just as well as I'm due a F2F with the gastro bods soon, I hope I don't see the over-enthusiastic young registrar who 'suggested' that I must be a secret alcoholic 🤯
I'm not surprised that you are concerned about your cataract operation. If you have EDS or severe HSD that could have a connective tissue component any surgeon or Opthalmologist needs to be told and needs to follow surgery instructions for EDS sufferers.
Have you got a Medical Alert Card for EDS from the Ehlers Danlos Society UK website?
It's a worthwhile investment as it tells people what the syndrome is on one side but also gives instructions to health professionals on the other about how to treat you.
In those instructions are included the information that surgery should be done carefully , sutures small and that healing is longer . It also points out that local anaesthetic often does not work for people with EDS . And that we can be more prone to infection.
Could I suggest that you write a post on the EDS forum requesting advice from other members about the most experienced surgeons doing cataract surgery in your NHS local area.
I would suggest you also look at their website at the list of doctors or clinics for this , and , ring your eye clinic and ask which cataracts surgeon has experience of operating on patients with EDS and other connective tissue / eye fragility problems .
Ask for it to be added to your notes that your appointment should be with that surgeon.
If you receive an appointment with a different surgeon , ring the clinic , explain it to them again, and ask to be swapped to the surgeon that is right for your condition.
This will give you more peace of mind as you will not have to worry that their are more risks in what they do while you are under General anaesthesia.
When it comes near to your operation date , put up a post and ask for people's advice on links you could read and print off to show your surgeon with recommendations of things to do , and not to do while operating on you. They are usually very flexible as long as they know there is a medical reason why.
You can also message me privately then if you would like and I will be happy to research some links for you.
There is a familial link to a rarer form of non alcohol related fatty liver disease linked to us having genetic high cholesterol and/ or gall bladder dysfunction. Both my Mother and her Father died from that illness , or cancers linked to it.
I've already had my gall bladder removed just before my 40 th birthday it is part of the reason I restrict the amount of fat and types of fat I eat and warn people to check on their own liver, heart and cholesterol health ( and family history of illness ) before beginning the Low Carb / High Fat diet.
It is , I'm sure , amazing for the Healthy , but like any weight reducing diet a person with Chronic Health issues should check carefully before using to make sure that it couldn't make their condition worse.
Hi BeeThanks for the info re cataract surgery which I have certainly taken on board.
The familial liver condition is of interest to me because of your journey but also because it was one of my research interests back in the day. Does it have a named gene?
I will look up the gene , but it is in my Mum's hospital notes as the tests were finally done then , and in truth I was putting that off until I went for my genetic appointment and my diagnosis of other things had finished .... Of course , this new B12 issue has raised its ugly head now too.
Unfortunately, the only tests that had come back were Folates and the Coeliac test. Coeliac , negative but just in the lowest end of the range. Folates were very low but not in the deficiency range.
The Vitamin D and IFAB test had not been sent through yet ( I have my fingers crossed that they haven't mucked them up as is often the case here ) . Hoping they will be in on Monday when I go back for my third B12 injection.
This sounds very thyroidy. I was told bloods are normal re thyroid numerous times over a 30 year period of ill health. I now take thyroid hormones and feel loads better though still a way to go. The TSH test is not very reliable but unfortunately doctors rely on it.
Thanks .I have been checked for Thyroid and Parathyroid before , and thought I might have an issue then , even trying to get them to test more than the usual for the NHS but at the time they appeared unremarkable.
I've been hit by that many bullets over the last ten years I was hoping I had dodged that one but I'm taking a deep breath today and preparing to have to get the thyroid properly checked .
The trouble is , they never test the things that could link together , like B12 and Folates , at the same time as Thyroid ( or my various doctors and consultants haven't except once ) so they always only pull the curtains back in half the window when these things come up.
If the really looked at the view they would see you were having problems with both issues at once and I'm sure they could then adapt both therapies a lot better and we'd all feel better much quicker because of it.
Feeling more tired today after the first injection than I did before. But that will be my body adapting and reacting so I am sure it will pass.
Second that , I have been saying in replies for years that , " There is nothing that makes you feel more ill than trying to get well!" And ironically , the group of people whom are meant to be there to help you get better are usually the ones that make you feel worse.
Yes. I go by symptoms. When I first began using Armour thyroid, I used the body temperature method to find my dose. And it's hard (but not impossible) to find a prescriber who is aware the tests aren't very useful.
I gained weight when my symptoms were at their worst but in my case I think it was a combination of factors
lack of exercise as struggling to walk
comfort eating
possible hormonal issues - TSH was increasing
I also had spells of extreme stress when I was trying to find out what was wrong with me and had difficult experiences with doctors which led to weight loss.
"just had the tests for Intrinsic Factor antibodies"
Have you had the results yet?
It is still possible to have PA with a negative result in Intrinsic Factor Antibody test.
PAS can offer support and pass on useful info.
PAS membership is separate to membership of this forum.
Links to forum threads where I left detailed replies with lots of B12 deficiency info eg causes and symptoms, UK B12 documents, B12 books, B12 websites and B12 articles and a few hints on dealing with unhelpful GPs.
Some links may have details that could be upsetting.
Results for Intrinsic Factor , Folates , Full Iron panel and Vitamin D should come back tomorrow.Our surgery has a terrible habit of getting samples wrong , I hope it doesn't happen this time , I asked them to check they were using the right bottles as I had my first B12 injection straight after the test so I won't be able to get the IF done again.
Thank you for all the links , I really do like to be well researched and prepared , it's advice I give to others all the time.
The weight gain was just odd , definitely a change in fat distribution , and muscle loss on arms and legs despite me actually increasing my activity. I'm doing the one million steps challenge over three months with my husband for Diabetes UK. I wanted to help him have more motivation to get fitter and realised thus might be the last time I could manage a physical challenge on my feet because if my other health issues.
Dysautonomia has basically stripped me if most types of activities apart from gentle ones and it us hard enough as it is maintaining your muscles without also finding these Vitamin deficiencies and malabsorption causing another obstacle.
Thanks again , this is such a lovely and knowledgeable group , just wish I'd met you all in different circumstances .
So tired today , despite having the injection , I know that it can happen as the body adapts but having yet another health knock back after hoping I'd reached the end of getting diagnosis has even knocked me back , which never happens , I'm all about looking for the silver linings to keep my Mind positive.
Goes to show , even the most positive and experienced of Us can have a bad day
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Is it possible to have pernicious anaemia with a B12 of 550? 
Does anybody have a b12 deficiency without having pernicious anaemia ?
Is it possible to have pernicious anaemia despite B12 in the normal range?
Daughter diagnosed with b12 deficiency result was 109
Newly diagnosed with B12 deficiency. Do I need to be tested for PA before B12 injections?
