so so fed up and in tears. The self injecting of B12 is going well, not arranged re checking of bloods yet going to ask in a few months. So I am fat, have carried extra fat for a few years, but seems to have got out of hand last couple. Early last year had all sorts of blood done after insisting I was trying hard to improve my health but felt it was worsening. I don't have a thyroid , removed in mid 1990's. Gp is always wanting to reduce thyroxine, I always refuse. Had agreed to a small reduction from 150mcg to 125 mcg year before all tests. Was taking Venlafaxine for depression, apparently this puts more weight on and has an adverse effect on blood glucose levels. Started HRT last autumn to see if it would improve anything.
Anyway they say thyroid levels fine, they seem to like it lower than my bod does. glucose up a bit, cholesterol same , iron low, vit D def, B12/folate def, through the floor apparently. Given a months supply high dose of iron tablets, told I could then buy over counter. Same with vit D, huge dose for month or so then to buy my own. Given folic acid 5mg tabs also for a month, then same buy it if I wanted. Also magnesium def, taking supplements.
Late last year had some more bloods , they report that I am now Type 2 and wanted to start metformin , I refused. Got sent for eye screening for diabetes in march and 24 hour BP... just had a long phone conversation with GP which has left me in bits, if there are typos, sorry can't see screen for tears.
Eye screening all clear, BP monitoring averaged out at 141/70 something,, low 70's. Had low BP for years. So now she tells me my risk for stroke and heart attack in the next 10 years is 12.5% apparently anything over 10% is cause for action. Wants me to start BP meds and statins, I don't want. Tried to explain to her how hard I have been trying to lose weight , currently unable to exercise due to injured knee and ankle, have an appointment for steroid injections , not looking forward to it but can't carry on in this pain. What the hell has gone wrong with me, have always been reasonably fit and active, even with a fat arse. Doing 14 hour shifts on my feet all day up until last summer. Now struggling to stay awake, HELP, feel completely defeated , sorry for the thesis, willing to try anything within reason.
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Polo22
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Thank You for all the pointers, will try to check everything out. I am not getting any support/treatment at all at the moment from GP, yes only given months supply of tablets for everything, I haven't supplemented iron as I don't feel safe taking huge doses without being checked regularly. they did full blood count , iron study done, serum ferritin was done December 2020, no offers to re check so that's on the to do as well, Thanks again
If you were tested for coeliac and got a negative result, read the guidelines above carefully to check that your GP followed the recommended diagnostic process, some don't....
A person can get a negative result and still have coeliac disease in some situations
If you click on "project documents" then on "consultation comments and responses" it gives a good insight into current issues around diagnosis and treatment (over 40 pages).
Local Guidelines
Each CCG (Clinical Commissioning Board/Health Board/NHS hospital trust in UK is likely to have its own local guidelines on treatment/diagnosis of B12 deficiency.
Worth tracking down the local guidelines for your area of UK and comparing the info in them with BNF, BSH and NICE CKS links.
Some local guidelines have been posted on forum so maybe ....
1) try a search of forum posts using terms "local guidelines"
2) try an internet search using "name of CCG/Health Board B12 deficiency guidelines"
3) submit a FOI (Freedom of Information) request to CCG/Health board asking for access to or a copy of local B12 deficiency guidelines.
There are likely to be local guidelines on treatment/diagnosis of folate deficiency, iron deficiency, thyroid issues, coeliac disease etc and I think it's useful to know what local guidelines say as sometimes the advice differs from what's in national guidelines.
Two useful B12 books
"What You Need to Know About Pernicious Anaemia and B12 Deficiency" by Martyn Hooper
Martyn Hooper is the chair of PAS (Pernicious Anaemia Society).
UK BNF treatment info in above book is out of date. See BNF hydroxycobalamin link in this reply for up to date info.
"Could it Be B12?: An Epidemic of Misdiagnoses" by Sally Pacholok and JJ. Stuart (USA authors)
Very comprehensive with lots of case studies.
"find group stuff very difficult and anxiety provoking (autistic) "
Is your GP aware that you are autistic?
They should be taking this into account when trying to decide best way of managing your health issues.
NICE guidelines on Adult patients' experience of healthcare
I think you should start either intermittent fasting or a paleo diet. Both will help you lose weight and reverse diabetes and also lower cholesterol.
I do a combination of the diets. Every day I intermittently fast. I don't eat for a period of at least 16 hours. It sounds a long time but being asleep counts as a fasting time. Basically all you have to do is skip breakfast. The extended period of not eating forces your body to use glucose stored in your body and is a very efficient way to lose weight and it also has the benefit of lowering your blood sugar levels.
I have completeIy reversed my diabetes and lowered my cholestrol level. My partner is doing the same as me and lost over a stone within 2 months and has kept it off. The best thing is that you can eat anything you want during your eating period. In fact you must eat plenty to carry you through the fasting period.
I think you should give it a try. You can work up slowly to the 16/8. Gradually eat breakfast later and later until it merges in with dinner time. I promise you it will become completely natural missing breakfast.
This is exactly the same as a friend who reversed their quite serious Type II diabetes on the same regime. And there are lots of recipes out there to help. Certainly worth a try Polo22.
Polo22,
Sounds like GP is not that helpful ..... but we're here to encourage you to overcome what has been a difficult few months. So dry your eyes and we will all try and help.
( I know nothing what's so ever about thyroid etc so as sleepybunny has said post on the Thyroid forum).
Folic acid, b12, iron all vital for the immune system.
It's not going to be a quick fix, but you will benefit in a few months. Once you have replenished what's deficient gradually life will return for the better.
Just a query, you mention you went onto HRT last year,
Do you feel the benefit , or have you been feeling worse since. HRT in known for lowering b vitamins as are certain anti depressants,.
Keep a diary of how your feeling, what you are eating etc
This might help to see if there are certain foods that do not agree.
Reading other peoples post on the forum you will realise you are not alone, also someone response might ring a bell that will help.
I hope you find the website useful, any questions just ask and people will try and help.
not sure if I am benefiting from HRT, or if it's the start of improvement from B12 injections, guess my confidence to know my own body has been severely knocked, will have a look on thyroid forum too. thank you
they offered me a referral to dietician, loss club, at first very reluctant to accept, find group stuff very difficult and anxiety provoking (autistic) but decided to accept. Hopefully end up with some ammunition to argue my case , thanks
My advice would be to drop the carbs and follow a low carb lifestyle. I have done this and it has really made a difference, both with weight and the lethargy. I am type 1, so have had the advantage (if you can call it that!) of counting carbs for years, which probably makes it easier to follow, but if you start by replacing all the heavy carbs from meals (bread, potatoes, pasta, rice etc.) with alternatives, you will soon see a difference. Once you learn more, you can tweak and reduce even more. As long as you have protein, you will feel full.
I’m really sorry to hear all this and you are suffering so much. Good that you are standing your ground with GP. I don’t know much if any thing about thyroid but it is your body and you know best which dose it functions on.
Now, I hope you are not offended when I suggest an appointment with a private dietician. Their role is not ‘weight loss’ per se. For example, kidney patients have to severely limit their potassium (bananas, potato skins) and sodium input.
So, dieticians know about gut disorders. They also are knowledgeable about dosages, interactions (vitamin B1 needs magnesium) and the bioavailability of essential micronutrients nutrients (which zinc ? as there’s 5 or more types, citrate, picolate etc). So, it’s which one has the greater and quickest absorption rate to the body. Hope that makes sense.
They obviously will go through what you eat, paleo (autoimmune protocol which I didn’t even know was a thing but my natural food choice in summer), they may suggest FODMAPS, I don’t know but you work together.
Discuss symptoms that indicate low stomach acid, gut dysbiosis (probiotics, prebiotics, need testing).
All these impact on other areas of your body. It is way beyond my knowledge. You have several deficiencies which makes me go 🤔. From personal history I know stuff but links to cholesterol, diabetes, sorry, I am clueless.
The best bit, I feel, is when you tell a GP or a consultant, I’m waiting for/I’ve just had a dietitian’s appointment they advised x, y and z (a plan). This should spring to their mind,
‘Dear Doctor, this is beyond your role and scope, I have gone to a specialist within this field. So, instead of you jumping for your prescription pad, with your pharmacological (meds) input. I choose this route, may be my cholesterol, blood glucose will decrease or normalise. In medical terms, it is called ‘watchful waiting’.
Allowing a patient to manage their symptoms with some or no medical intervention. With a review in usually 3 to 6 months.
I hope you get soon get relief from ankle and knee.
they offered me a referral to dietician, loss club, at first very reluctant to accept, find group stuff very difficult and anxiety provoking (autistic) but decided to accept. Hopefully end up with some ammunition to argue my case , thanks
If it's any help your not alone with the weight thing I cant seem to shift an ounce. I was on a very high dose of levothyroxine so much so my TSH was serverely suppressed. Then some bright spark (endo) reduced it by 100mcg all in one go ! 😱
This left me not only very unwell but also under medicated ! They then yo yo'ed with it up and down and I have never been right since. Energy, whats that ? I feel like I am dragging myself around. The B12 issue most certainly hasn't helped.
You have had a full thryroidectomy, you say your Vit D is low. Have they checked your parathyroid glands since the removal of your thyroid ? ? ? ? ? ? If not insist they check. There is a lot going on and the diabetes was the last straw but with a little guidance you might be able to get that back on track - my suger levels were top end and at present waiting for blood results. 🤞
I have ended up in tears so many times when seen by Gps / Consultants and some are so 🐷headed. My downfall is carbs I love my mashed spuds but all in all I wouldn't say my diet is bad. I am gluten free because it makes me blow out as if 9months pregnant. Dont be too hard on yourself I shouldn't think your enegy levels are great to make you want to exercise. Try and get the blood suger down - lots of useful tips on Utube. Wipe those tears you can always find others to talk to on here. Big hugs 🤗
trying to find something and looking back through posts, thank you for sharing and giving me some pointers to chase a few things, never had parathyroid check, will add it to list, will look into thyroid stuff too (((hugs))) back
This is something that should have been done a long time ago. Sometimes when removing the thyroid they damage the parathyroid glands and seeing as your vit D is low this should be considered. My parathyroid glands dont work so I have to take calcitriol (vit D) and calcium.
It is hard to lose weight when our bodies are so sluggish and feeling tired all the time. Keep your chin up and if not sure about something it is your right to question no matter how arrogant or pompus they are.
I am a lot older now and no longer come out of consulting rooms in floods of tears. I am angry and if Idont agree with something I tell the swines. You can learn a lot on here and knowledge about your health is a good thing to bat at them. Always freinds on here who have a listening ear. Xx
Just say it as if you know what your talking about even if you dont. 🤣 If you imagine the thyroid as a butterfly shape the 4 tiny parathyroid glands sit on the corners of the thyroid. Google it.
If you really want to look as if you know what your talking about you could throw this in for good measure - I am concerned I might have hypocalcemia ! Google that one too, note the symptoms.
All you have to say is seeing as your Vit D is so low could they check your parathyroids are working properly. It's a blood test so easy enough to do.
Am so sorry you are having a really rough time Polo22.
The last 2 years or so haven't helped either, and I think many folk are struggling for multiple reasons. The reply by 'charks ' below is certainly worth considering - have a friend who had serious Type II diabetes and due to the regime of fasting and different food completely reversed the diabetes and lost about 2 stones in weight. Regarding the iron and Vitamin D both of these deficiencies will make you feel very low in mood, so they definitely need addressing.
Go to Lamberts Healthcare, Tunbridge Wells (Google for phone etc), they are a UK supplement company who I use and I know of others in this forum who use their supplements too. They have qualified nutritionists who you can approach for help in deciding which supplements to use, after your GP prescribed batch runs out. Another company with similar help is Cytoplan.
I know you say you are fat and therefore exercise and the injury to your knee and ankle is going to limit what you can safely do, but could you consider water aerobics? The water will be warm and support your weight and joints, so you can start slowly with gentle movement exercises. Perhaps you could be referred for hydrotherapy by the surgery. If not, source a water aerobics class and take a friend for company, laughs and support.
And don't forget this lovely forum, we are all here for each other. Keep us posted, keep us in the loop and have a rant on here in safety when you need.
PS: not medically qualified but enthusiastic about our health.
You have been hit with a tripple whammy: Low iron, Vit D and B12|
Individually those things will make you extremely tired. Together, you will be insanely tired and depressed, with a feeling of hopeless.
You are on the right track, so keep taking those meds D,B12, Iron and just take it easy and let them work.
D will take at least a month,
Iron I have no experience with.
B12 took me a year of injecting, daily for 6 months then every other day, then finally every 3 rd day. (original level 190 but I was in bad shape).
I really can't tell you all how much I appreciate the help this forum, the organizers and the members have given me through the last year. You all literally saved my life and my job.
Hang in there Polo22. You are doing the right things. You are determined, intelligent enough to set those boundaries (kudos) and press for the right answers.
WEIGHT
I have struggled a little with the weight thing because of the b12. Let yourself get a little more energy as you get your vit levels up. then worry about the weight.
The suggestions for paleo are right, lower the carbs. you probably won't feel good enough to go on a strict diet just yet, so just take embarrasingly small steps if you can
like lowering carbs and stay away from fried foods or high fat foods. but all in all, if you don't feel good enough to make those changes, focus on the survival until the vitamin levels are up. When feeling so low on enery, I couldn't take on much esp with my job being a priority, so I just determined what the most important thing was and focused on ONE THING AT A TIME. I let all the other things go.
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Iodine def. and b12, has anyone experienced this please?
Wahey my test results are in!
Still feeling tired
Update, Please sir, can I some more?
Time needed to show hematological changes after started b12 injections?
