Am I misunderstanding all this?

[janey1234]

Me again..

Following my recent blood tests (see recent post), doc requested another appt to discuss my 'borderline' result which I attended yesterday.

On arrival he questioned why I was there as thyroid tests were borderline & within range and all of my other blood results were normal. I had to point out that I was in the early process of Levo treatment, yet to get to an optimum level and feeling rubbish.

I explained that I had been working with Thyroid UK to try and fix myself, rather than taking up NHS time and funds and that despite the 'normal' results, the figures suggest deficiencies and an explanation as to why I still feel the way I do.

I said I was quite alarmed at my TPO result, 1175 (0.0-60.0) and that maybe there was a reason why they were so high and perhaps I could do something to ease / slow them down. I used Chris Kresser's 'plugging holes in a sinking boat' metaphor to try and explain what I meant and he replied that my underactive thyroid was causing the antibodies, not the other way round. I took a deep breath before my husband interrupted to tell the doc I wasn't a 'Googling Hypocondriac', he was witnessing my symptoms & behaviour and was really worried that something else is going on that isn't being looked at.

At this point I broke down, pathetic I know, but the biggest thing that has scared me out of all this was my B12 levels, 295 (211-911). I knew nothing about B12, and all the other recommended tests until I discovered this group, but it's this one that has frightened me the most. I'm a gardener and 4yrs ago I suddenly noticed that I couldn't recall plant names anymore. I knew what to do with them but couldn't recall their names. My 'sighs' are a family joke as are the number of times I've walked into walls & doors.

Over the last 3 months I have started tripping on words, saying them the wrong way round, getting the word completely wrong or not knowing the word to use. I've also forgotten the names of objects. It's only occasional, the family says they haven't noticed but I have and I don't know if they are not saying anything so as not to worry me further.

I know my husband sometimes gets exasperated at my 'rabbit in headlights' look, I feel like I'm sometimes spaced out / brain fog. I've always put my 'restless legs' and the pains in my legs, ankles down to my job but we both don't think so anymore.

I told the doc all of this and he said it was all down to my thyroid. I said that Thyroid UK & the PA recommend higher levels than my results were showing and although I wasn't asking for NHS drugs and that I was more than prepared to self-supplement, change my diet, etc... could I not be checked out just in case something is being missed that I can maybe address and fix.

He then said he'd up my Levo to 125mcg and refer me to an Endo but if I wanted to take B12 supps then that was my choice. He said my B12 result proved I was absorbing it and it wasn't affecting my thyroid. I said I wouldn't take any supps until I'd seen the Endo, in case it skewed any future tests, plus I wouldn't know if the Levo was working.

That was it, I left before he thumped me...or visa versa ☺

So I don't know if I am misunderstanding all of the guidance, explanations and associated reading links from the good folk here. Am I being paranoid?

Self doubt has crept in. I'm usually the happy one but that B12 has shaken me.

Thanks for hanging in there with this post.

PS my Vit D test result was fine, 116nmol

[puncturedbicycle]

Can you clarify the following:

(1) What do you want to achieve with your gp?

(2) Did he think you were borderline because you're already on meds so your tsh went down? Not sure what the borderline discussion is about.

Maybe some of this info is on your profile, so will have a look.

[janey1234 in reply to puncturedbicycle]

1. I guess I wanted him to say I have no signs of dementia and that all the advice re supps was correct and to not poo-poo them. Stupid I know.

2. I think he assumed this was my first visit and that I shouldn't have been called in as my results were bordline and therefore nothing to do. I had to point out that he had called me in and that I was in the process of 2-3 monthly blood tests while having my TSH stabilised.

☺

[puncturedbicycle in reply to janey1234]

1) No, not stupid at all, we all want to have a good relationship w a good gp. The problem is that this may not be possible and then you kind of need to treat them like a gatekeeper and figure out what they want from you and what you need to do to get what you want from them if that makes sense. I wasn't sure if you were trying to get medication adjusted, vits/mins prescribed etc. If you want a concrete thing eg prescription from your gp it is worth spending the time, if you're trying to convince or educate the gp so they will agree w you, personally I think you could spend your time more productively. I see so many people here get tied into a fight to the death trying to get the gp to say 'yes you're right and I'm wrong' about something where you don't require their agreement (supplements etc) and I'm not convinced that is ever worthwhile.

2) This is v common and I suspect stems from gps having overloaded schedules. Also they just don't value the thyroid stuff very highly.

This won't make you feel better I fear but the 'good' news is that my impression is that 6mos or a year won't make a difference in terms of being able to do anything about dementia, so I don't know if it is a time-sensitive thing as much as thyroid stuff is.

I don't know if I read your recent post w test results, but if you're undertreated these symptoms may indeed be from your thyroid. That is good news because that's treatable, whereas dementia really isn't especially treatable.

If you treat your nutritional deficiencies while you treat your thyroid you may begin to feel much better very soon. As Ruthi says, your anxiety, and what I'd call lack of confidence, are textbook thyroid symptoms.

[janey1234 in reply to puncturedbicycle]

Thank you again, today is a new day and I am going to try and fix myself rather than wait. ☺

[Ruthi]

Borderline my eye! You are hypothyroid.

You are probably low on B12 because being hypo your stomach acid is low, and you are not absorbing your B12 very well. But of course, given that autoimmune diseases hunt in packs you should be tested for PA just in case you are in the early stages.

And no you are not misunderstanding anything. Your doc is overworked and ignorant, the two together mean that anything that isn't obviously immediately life threatening doesn't wake him up.

I have to say you are horribly anxious, which is a symptom of both hypo and B12D, but that isn't going to set your mind at rest. So I'd suggest getting the relevant blood tests done privately. Then you know, and you know whether to beat the doctor up, or not.

You almost certainly do not have dementia. A few months with your TSH at 1.0 and your B12 nearer 1000 and you should be fine.

[janey1234 in reply to Ruthi]

I am horribly anxious...guilty! Do you think the Endo will test me for PA?

[Ruthi in reply to janey1234]

Not guilty, that is a nasty judgemental word when its the doctor's lack of proper treatment that has caused your anxiety.

No, the endo will not test for PA, that's the domain of the haematologists. If you are lucky the endo will raise your levo.

[janey1234 in reply to Ruthi]

So I'm not really sure of the point of the Endo appt 😩 as the doc is at least retesting my thyroid and slowly upping my dose. Maybe I will just start supplementing now and try and ease my anxiety in the knowledge that at least I'm taking action sooner rather than later.

I gusess I have nothing to lose.

Thank you Ruthi

[Angel_of_the_North in reply to janey1234]

Might be worth trying for a referral to haematology for B12 and PA.

[janey1234 in reply to Angel_of_the_North]

I'm going to take matters into my own hands now, too many sleepless nights fretting and time wasted. X

[greygoose]

Well, now I think I've heard it all! The low thyroid is causing the antibodies, not the other way around! lol That almost leaves me speechless!

You know, you really don't want to bother with this man, he is so ignorant! You know more than he does. Don't ever go and see him again. You haven't got it wrong, he has! In fact, I think he's rather dangerous. There is nothing wrong with your brain - apart from lack of T3 and vit B12 - so don't worry on that score.

Did you want him to test you for PA? Don't think there's much chance of him doing that. In fact, I don't think there's much chance of him doing anything for you, apart from signing your prescription for levo.

[janey1234 in reply to greygoose]

Thank you greygoose , I wondered if the Endo will test me for PA or if I'm just wasting more time waiting for that appt and then possibly getting nowhere.

[greygoose in reply to janey1234]

That's a gamble we all have to take. When is your appointment?

[janey1234 in reply to greygoose]

He said I should hear in 6 weeks but if I didn't, he would retest my thyroid then to see how my thyroid levels were following the increase to 125mcg and then I would have more up-to-date results for the endo.

[greygoose in reply to janey1234]

OK, so it's quite a wait, isn't it.

[janey1234]

Is the PA test just the same as a B12 test?

[Ruthi in reply to janey1234]

No, it's a test for antibodies. You don't have to have PA to be low in B12. Lots just don't absorb well.

[helvella in reply to janey1234]

No.

A B12 test is asking how much B12 there is in your blood.

A PA test is asking whether you have the antibodies which are usually regarded as indicating one specific cause of low B12.

Have a look here:

pernicious-anaemia-society....

[janey1234 in reply to helvella]

Thank you helvella ... So whether it's antibodies or a low B12 test result, the treatment is the same.

[helvella in reply to janey1234]

The issue is always that you do not have enough B12 (and often not enough folate either). The treatment is always getting more B12 (and often folate/folic acid as well).

The difficulties lie in getting from here to being treated, especially as most severe sufferers require injections. At least with a test result showing PA you have something you can argue with. If you have unexplained low B12, you are likely not to be very successful.

[puncturedbicycle in reply to janey1234]

I understand the reasons people want these things made official so they fight the good fight w doctors, but really janey1234 you can treat this yourself, and if your resources (energy etc) are low you may not want to waste them trying to convince doctors.

I'm not saying that because I think you shouldn't get into it w the gp, but because time and energy are precious when trying to get well.

This is a good site: b12d.org

[janey1234 in reply to puncturedbicycle]

That B12 is really helpful and you are right, time and energy are precious so I am going to act now. In fact today is Day 1 of being gluten free.

Thank you @puncturedbicycle ☺

[SlowDragon Administrator]

Oh dear....

While you were there did you bother to ask GP for coeliac test? If not you can buy a postal spot test one £23 - but none of them are 100% reliable

healthcheckshop.co.uk/store...

Or have you already started gluten free diet? It hopefully will make huge difference, reducing symptoms, lowering antibodies & help improve vitamin levels too.

Start with just one supplement, waiting a week to 10 days to see what reactions (good or bad) before considering adding another.

You could start with selenium, helps reduce antibodies and won't affect any future tests from an endo ( though I'd be amazed if they tested anything other than TSH / Ft4 and possibly Ft3)

Regarding low B12, & B complex if you supplement before seeing the endo then test becomes irrelevant

Is this a private or NHS endo appointment? If NHS it will probably be a long wait....

Perhaps consider getting tests yourself via Blue Horizon? They might do a deal on both together?

Advanced b12 test

bluehorizonmedicals.co.uk/e...

They also do PA test (not cheap)

bluehorizonmedicals.co.uk/e...

[janey1234 in reply to SlowDragon]

Yes I did mention the coeliac test in my attempt to get him to understand that 'something' is causing my high antibodies. It was at this stage that he said it was my thyroid was causing antibodies and the conversation plummeted from there. I think the endo appt was a way to get rid of me as. I think he believes the endo will just repeat his words. In fact he said, feel free to come back and teach me if you learn anything new.

[SlowDragon Administrator in reply to janey1234]

THe Immune Recovery Plan - Susan Blum

Hashimoto's - the root cause - Issabella Wentz

Could it abe B12 - Salky Pochek

Anything by Chris Kresser etc etc etc

If you are waiting for NHS endo referral, be surprised if wait is less that 3 months, possibly longer 😟

[janey1234 in reply to SlowDragon]

Blimey... 3 months. I'm not sure my stress levels will last that long. I have read all of Chris Kressers articles this week, they were the ones that made more sense and easy to unserstand. I should have given a copy to my doc

thank you SlowDragon

[janey1234 in reply to SlowDragon]

I haven't gone gluten free yet, but will do. I wanted to see what the docs appt was going to reveal before making any changes. The Endo appt will be NHS.

Also, if the Endo isn'

[janey1234 in reply to janey1234]

Sorry...presssed 'reply' too soon. If the Endo isn't going to test PA and I've already had a B12 test then I guess that starting supplements now isn't going to make any difference.

[janey1234]

Sitting here, having a blub and discussing with my very-understanding other half, I have decided to just take matters into my own hands now.

I am going to go gluten free and take all of the supplements recommended by you all here. I understand that I need to leave a gap of a week to 10 days before adding another supplement to the mix.

Can I get clarification on what I should take, the amounts and timings in this post or should I create a new post?

Thank you everyone @greygoose SlowDragon Ruthi helvella for your help. You should all be out partying on a Friday night x

[helvella in reply to janey1234]

What is partying?

I suggest you hop on over to the Pernicious Anaemia Society forum right here on HealthUnlocked. They are pretty helpful - even if you don't have PA!

Suggest you create a new post.

[janey1234 in reply to helvella]

Haha! It would be nice to party again ☺

I will pop over to the PA group and and ask, thank you helvella x

[Lily288]

Janey1234 I'd venture to say that you're hypothyroid and that your being so worried is also causing you even more anxiety and all this together, makes you nervous and is causing you to stutter like... I just went through a bunch of stuff that caused me same type of stress and I'd been blabbering things that made me wonder if I'm losing my blooming mind. But I realized that, along with fighting a similar dosage fight as you are doing for the past several months that it had gaven me anxiety and I was also nervous, of all things, owning a new puppy and waiting for the lady who sold it to me to send me the Vet's papers, caused me a whole bunch of added stress... I find it amazing how worrying can make us sick. Now, I gave up on this lady and puppy and I are more in tune, I've now gone back to being myself almost.... Hope this helps you settle..

[janey1234 in reply to Lily288]

Thank you lily288