Helloooo! So I've been hanging around the PAS forum for a week now and all roads led to here - I'm off back to see the original doctor who sent me for a blood test which came back with B12 issues and who put me on 2 weeks of 6 jabs total which finished 31 August, then two weeks later I crashed so went back, saw different doctor who put me on another set of 2 weeks 6 jabs, had first last week, no appointments until next week but going back tomorrow to try and get them to follow the NICE guidelines which say jabs every other day until no further improvement and checks every 3 weeks.
The only time I've felt 'right' was ten years ago when I followed the "You Are What You Eat" diets from the fake Dr. Dr. Gillian McKeith and I gave up wheat and carbs and dairy cos I was getting bunged up with dairy and I've always been big, this time I went down from 17.5 stone to 12.5, now back up to 17.5, been practically bedridden for the last couple of years & for the last year been stupidly eating bits of wheat & dairy.
Asked doc about lump on throat as had for ages but only seem to notice it sometimes and thought it was probably just glands swelling but worried it could be smoking. Doc said was 'normal' and would dissolve in time, everyone gets them(!) but referred me to ENT and have appt there on 10th.
I wasn't going to mention much on that front tomorrow and just focus on getting the correct loading doses for B12 but recent convos over at the PAS forum makes me think I need to highlight the thyroid issues more. I read somewhere that if they do do tests they don't always do the right ones so as I've only got a few hours left to get everything ready for that 10 minute slot I thought I'd skip the queue and ask you in the hope I'll save a few more hours as I'd left searching this forum until after tomorrow's appt!! Or do I wait for the ENT, is that what they do? Was Dr just waiting for me to go there to find out my fate?
Hah I guess shopping list was a bit too literal, it was more of a what should I ask for as all the doc did last time was put me on the B12 loading doses and as my tests said negative for PA she didn't want to see me for an appointment which would've been nice just to tell me what the hell was going on as at that time I'd not heard of B12 any more than the next person in the street.
I've an appointment at the ENT in a couple of weeks so perhaps I'll get more luck with them on the thyroid side, I just thought if I say it's likely I have thyroid issues they send you for tests and I was reading about the different ones require, H3, H4 etc. whatever they are.
Also I read about getting checked for the 'Magic Five' – Vitamin B12, Vitamin D, Iron, Ferritin and Folates, so I have my B12 level, and folate, but not the others, and iron apparently is one to have checked by doc as shouldn't be too high or low.
I'm sure people are gasping but that's my pre-coffee memory of lots of reading yesterday
Appointment's not till 4.50pm so got a little time yet!
Thanks for your time and attention The_will_of_Jill !
Cool 😎 You are funny! People are starting to wake up in the UK now so hopefully someone will be along shortly who is much more knowledgeable than myself. I am just winding down for bed over here in Texas as it is around 12:30am.
I'm hoping for all the best for you with everything, and will be watching to see how you go 🌝
Ah thanks The_will_of_Jill you make me want to change my name to The_stoicism_of_Steve but I fear it would be a tiny lie lol!
Yeah well I post at all times as been 'working' on the interwebs for many years so like the other night when I thought I'd finished my day but then my colleague in Montreal started up, then one in Brisbane, and when the conversation's flowing you just have to go with the flow.
Hope you're all ok in Texas, it's a big place I know, many friends in Austin!
Yes, ok here in Dallas. Houston is a mess though : /Austin yeah.. keep it weird!
I had my blood work done last Friday and I'm anxiously awaiting the results to see if I myself have B 12 deficiency as well as several other things that I'm concerned about which have never been tested even though I've been diagnosed for eight years now. (And feeling awful the whole time basically)
Getting the doctor to agree to running extra tests was like going into battle.
Ugh, sounds like fun Then I read the test results you can't always go by either all the time - never thought I'd end up a medical researcher but seems like a DIY service, still - hooray for the interwebs!
Hi Treepie ! Oh, I thought the paragraph after my results talking about my dietary issues and the paragraph after that about the lump in my neck did, no?
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...so I've had a lump in my neck for years which I thought was gland swelling sometimes but could be more pronounced when I eat the wrong foods, then recently I've got a lump in my throat which from what I've searched sounds like a goiter, the doc said it was fine and just a build up of stuff and would go away.
Not in itself. Mandyjane below refers to the thyroid blood tests,although you may need to get them privately if endo / GP will not or have not checked: TSH,FT4 and FT3 plus antibody tests.
Ah cool, thanks for the info, somehow missed the reply below!
Steve. I would leave goiter to your ent doctor and I would imagine you have had thyroid blood done in recent past. Ask for copies of you blood results which you are initialled too by law and post those on thyroid forum. You can ask reception for these. Get as much B12 as you can in mean time.
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Thanks Hidden awesome advice - somehow missed your reply earlier, still getting used to this system / notifications / emails / scrolling / threads lol!
Moar B12 yay, can't wait!
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oh and when you say get as much b12, that's supplement as well? I've heard there's 5,000 mcg tablets/lozenges and oral sprays and stuff like that.
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I meant as much B12 as you can get out of GP. I dont think supplementation will do you any harm but It would be a waste of money if getting the jabs free. Have they shown you how to jab yourself at surgery. You could ask them too. It would save you a lot of effort in regard to getting to surgery and also jabs stingy little sods and much better given very slowly I find. I do myself so I push a tiny bit in untill it stings a bit then wait and do a little bit more and I find it much better that way.
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I've got self-injecting on the list, just packing up my stuff now - it's only a 10 min cycle but I'm way too dodgy to cycle so getting a lift, waiting for almost an hour then a long one mile waddle back, wish me luck and THANK YOU for all your help!!!
I'm not sure an ENT is going to test your thyroid. It's endos that deal with hormones. My experience of ENTs is that they have no idea that just outside the throat is a thyroid gland!
You should ask your doctor to test for :
TSH
FT4
FT3
TPO antibodies
vit D
ferritin
He probably won't do them all, but get what you can - the rest you can do privately. Ask for a print-out of your results, with ranges. If you live in the UK, it is your legal right to have a copy, so always, always ask for one, and keep your own records. Post them on here and people will explain what they mean.
I am not sure I would trust and endo either. In my experiance they just sit behind a desk telling everyone they dont have a hormonal problem but thanks for supporting me on my suggestion that some of Steves issues may be thyroid. I was didnt want to be a lone voice.
I suggested he wait for ent doctor as that is where GP referred him re lump in previous post. I didnt have any hopes that they had any expertise just thought they might have some experience.
Steve if you have been bed bound for 2 years and your doctor has not tested your thyroid and not even after you talking about lump in the neck I think you need to find a better doctor and also seek some legal advice. Several of use have over the years looked into claiming compensation and the legal jargon is 'whether the doctor has treated you in the same ways as you would expect of most qualified doctors.'. A lot of us like myself have been unable to claim as the guidelines are not good enough and qualified doctors are expected to follow these. In essance they are all rubbish with thyroid so we cant sue any of them. But I would think if your doctors has not done thyroid meds despite your weight gain, fatigue and deteriorating health he has fallen to new depths of incompetance and out done his peers. I think you may have a case.
Well I only went to this GP over the summer as I was getting headaches every day and that's when she sent me for the blood tests. I've only been back in the area since summer 2016 and thought I was getting things slowly back on track but now I see in reality I was just getting more ill.
Just got back, want to write up what happened but just don't have the energy and brain stopping every few seconds so need to rest for a bit I guess, I still don't understand how this stuff works, I've got a week before my next jab, am I just going to get worse?
Managed to get her to write to the hematologist and get another couple of blood tests, didn't even get round to mentioning the thyroid. It was like talking to a robot "well this is what we usually do" and I'm like well everyone's different aren't they. "we can't just inject you every day" - "It's every other day and it's not toxic as they use it for cyanide poisoning which is 5,000 times the amount" - "we're not allowed to just put people indefinitely on this" - "who's not allowing you to?" {silence} "well I'll put you on monthly so no-one can say we didn't do anything and whilst we're waiting for the hematologist we can still keep doing the two weeks of injections if it's not working".
So I think I got somewhere, I'm just worried that if what I'm experiencing isn't "reversing out syndrome" which I think would be a flipping miracle if it is cos I just don't see that, all I feel is I'm getting worse & understandably that worries me a little.
I hope one day I'll look back at what I typed here and laugh. It's either that or drool
I'll do a separate post on the appt, just pounding headache now and sweaty after the half hour wobble back, still, even now I have it better than millions of others in this world. Keep thinking that Steve, keep thinking that...!
Thanks again for all your support
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Well I read up on "reversing out syndrome" and nowhere does it say about the wobbly gait, but it does on this page about Subacute combined degeneration: medlineplus.gov/ency/articl...
where it also says "How well a person does depends on how long they had symptoms before receiving treatment. If treatment is received within a few weeks, complete recovery may be expected. If treatment is delayed for longer than 1 or 2 months, full recovery may not be possible."
and under treatment it has "Vitamin B12 is given, usually by injection into a muscle. Injections are often given once a day for a week, then weekly for about 1 month, and then monthly. Vitamin B12 supplements, either by injection or high-dose pills, must continue throughout life to prevent symptoms from returning."
Seen as I see I have all the symptoms of that and my brain has been going haywire these last couple of days, along with the wobbly walking I really don't want to just sit here and rot whilst waiting a week for my next injection. Am I worrying too much or not enough? I wish I'd seen that text above before I took an inch thick volume of paper down the docs and just shoved that on the desk, makes it simple and clear.
I finished my first 6 doses 31 August, 1st there was also a few more days apart from the rest, now I had one last thurs, next is 7 days away, and at the rate I'm feeling now I dread to think what state I'll be in by then.
I've got into the facebook group so perhaps I'll post there too see what they say, the more the merrier and I'm keen not to get worse, this is horrible
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Is it worth trying the 5,000mcg sublinguals or do I need to find out how to self-inject and do that? Surely just sitting on one's fat arse can't be the only answer.
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"People who have this disorder may become irritable, apathetic, drowsy, suspicious, and confused." <~ too effin right!
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I mean, I only live about 3 miles away from a massive hospital, should I just take a wobbly walk down there tomorrow and demand (nicely of course) they inject me? I mean (I mean I mean lol am I mean?!) I know the nurses are busy so they can't see me for another week but y'know, kinda urgent...
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Got one reply on FB saying they had similar and self-injected, guess it's time to bite the bullet and start googling and searching and sorting that out. Ugh. *Not* looking forward to this!
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It is a problem and an issue many people share. Perhaps have a look at Dr Chandys B12 support. You are not alone in this battle. It maybe worth you getting some lozenges or patches or having a chat with Dr Chandy. I get the wobbly gait whoosy head stuff.
I inject with insulin syringe, it is much easier than you imagine. You can buy the syringes from boots and I get my B12 from germany. Dr Chandys group does send out B12 sometimes but it is not expensive. I have just found battling with doctors an exhausting and fruitless pass time so treat myself. I need to get a taxi to the doctors quite often so I might even be saving money.
If you want the conspiracy theory summed up as far as I can see. Drug companys make very little money from the treatment of systemic illnessess. B12 and thyroid hormones are well out of their patent and if we are left with out treatment we develop loads of symptoms that the drug companys can come up with lots of newly patented expensive drugs to relieve.
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Thanks yeah I'm just sorting out my order from germany now - they've got lots of handy docs on the fb group so I'm ordering "folsäure 5mg tabletten" from there too, there's a few different products so working out which one it is I need as obvs all in german lol! So much fun wading through this when you're ill.
And yes, flippin patents eh, similar issues in the software world which is why all the NHS computers naffed up a few months back, and why I work in the Free/Libre Open Source Software world - patents on software is like patenting math!
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Then I read the test results you can't always go by either all the time - never thought I'd end up a medical researcher but seems like a DIY service, still - hooray for the interwebs!
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