my gp appointment

[nichola79]

ready for the long post: gets into my gp's room, oh how u doing nichola, not good I replied this dizziness and foggy thinking is getting beyond a joke now, im fed up with hearing what it isn't and not hearing what it is! dr "at least all ur tests has came back as nothing serious, I said u don't think what im struggling with on a day to day basis managing a home life and 4 children serious?, I have spent many years feeling like this and now its time I need answers and im not accepting the "depression" "anxiety" diagnosis anymore, im fed up with my endo putting it back to u and vice versa, I explained how I thought my ferritin was low she declined saying its because of womans menstral cycles I said well I don't get them as im on the depot injection which stops it, she went quiet, I said my results wouldn't even be as good not that they are if I wasn't supplementing, u think I need iron? she ignored, I explained how I would love herself and my endo to go through just one day feeling like me and not ask answers, I told her I have had enough of this and I now want answers, she looked at my long list of symptoms and said why its a lot but I don't think there is any one illness that causes all this, I said well I do then she said what thyroid? hello yes have u looked up thyroid I said to the gp, I said don't u think im sat here wanting to have this illness as I don't, don't sit there thinking this is a hypochondriact infront of u cause its not, I am a person who has gone thru nearly 18 years of being ill and as time has gone on getting more and more symptoms (worse now since stopping smoking) I need answers!

she read the letter that my endo sent her and only because I was quoting it and I said he offered the op there are ways he could try to shrink my nodule, and he lied telling me it hasn't grown but it has, and I explained that years ago we would get treated 4 our symptoms and not the lab work, she replied "what do u want out of this, if u had a answer what would you want (her thinking im a hyperchondriact right?) I WANT TO GET WELL I WANT ANSWERS, i told her i heard about many people commiting suicide because the bloody speacialists don't listen, i said if i don't get help im going to be self medicating even if its just to rule this out, i said if u had been ill as long as i have u would go looking for answers and i have, do u know how many people actually are suffering from negligence, i also told her my sisters has a b12 deficiency and she fobbed that off!

i am being referred to another endo 4 a second opinion and she stated she cant give thyroxeine its my endo that has too and a neurologist

where do I go from here? x

[rosetrees]

Your GP is talking from an orifice other than her mouth if she is saying she can't give you thyroxine. Mind did and I've never been anywhere need an endo.

My suggestion is that you write to your GP, politely requesting that she puts on you a 50mg starting dose of thyroxine. At the same time ask her to put her reasons in writing if she refuses, and to explain why she doesn't think your symptoms are due to hypothyroidism, especially as you know you have a nodule.

Meanwhile, persist with Dr P's regime. It's slow progress, I know. Nutri thyroid is the equivalent of NDT, so you are self-medicating. Raise that and the nutri adrenal slowly and steadily.

He put me on 2 NAX a day and told me to raise one a week to 4 a day and raise the NT as I felt I needed. I'm currently on 3 NAX a day, 1 NT and 50mg thyroxine, plus all the usual B12, D, C etc, etc supplements.

Like me, you've been ill for a long time. Be kind to yourself and take it slowly.

For me, though, it was amazing how even a low dose of thyroxine helped.

[nichola79 in reply to rosetrees]

thank you, it gets hard being pushed from pillar to post x

[tuf5ty]

Ive been on levothyroxine for 19 years and I have never seen an endo. you GP can prescibe.

[nichola79 in reply to tuf5ty]

she just brushes me off all the time, I suppose its because my lab results isn't high enough x

[shaws in reply to nichola79]

She just doesn't know. I think the thyroid gland training problems last all of half a day. It is diagnose only by the TSH. They do not know about clinical symptoms nor can tell by looking at the patient (as did the doctors trained before the 60's).

[Thyroidmeg]

I feel your pain doctors don't understand

[nichola79 in reply to Thyroidmeg]

just debating on what to do for the best x

[Thyroidmeg]

Read Mary shomon s books add her and thyroid sexy on Facebook loads if tips there

[nichola79]

I have added her x

[Hidden]

Do you have a copy of your B12/folate results? If you are in the lower end of the normal range this can point to a deficiency (the B12 range is set way too low in the UK, in Japan they treat anyone below 500 I believe). The fact that there is a family history of this disorder is significant. Try comparing your symptoms to those listed on the Pernicious Anaemia Society website or b12d.org website. Also good book on the topic called Could it be B12?Very similar to thyroid symptoms. Sounds like you could use a new GP.

[nichola79 in reply to Hidden]

b12 371 no range, folate 6.6 although I was supplementing 5000mcg of b12 and 1000 of folate my ferritin was 29 x

[Hidden in reply to nichola79]

Do you have any lab numbers prior to supplementing? And how long have you been supplementing? I would still say your B12 and folate are on the low side, and if this is with supplementation then imagine what your levels were before... I would also say your ferritin looks too low, I was advised to try and get this to about 80 for good health (mine was 58 a year ago). You should wing your way over to the PAS forum (is your sister a member?), they have some fantastic and knowledgeable moderators, and loads of info.

I am not a medical person, just someone whose been through it.

I have Graves disease and a B12 and folate deficiency. My last B12 test in March was just over 300, folate 4.5 and I was very symptomatic despite my thyroid labs being normal. Armed with lots of research about Pernicious Anaemia I asked my Endo to do a test called MMA, which came back elevated indicating a B12 deficiency at tissue level. Prior to this every doctor I had seen told me my B12 levels were "fine", despite me having a previous history of deficiency. So I now have B12 shots, folate supplement 5mg (which is prescription only), and I also take 1 sachet of spatone a day for iron. Am going to try the B12 spray in between jabs once my loading dose is finished.

You could have the Active B12 test, MMA and Homocysteine, but they are not widely available yet, think they do them at St Thomas' hospital in London. I would have thought your GP could at least test you for intrinsic factor antibodies and parietal cell antibodies given that you are symptomatic and have a family history of PA.

Don't give up! Only you know how you feel, and if your current GP won't take you seriously, find someone who will.

[nichola79 in reply to Hidden]

last year my b12 was 245 folate 4.6 and ferritin 48 so my ferritin has gone down since, I myself today got spartone water that I have started on today hoping that will help, I actually asked for these tests with my gp and she said they don't do them, so back to square one, you know since talking to loads of people world wide it has opened up my eyes to the gp's and some specialist they really don't have a clue!

i'd rather pay people that know about these illnesses and to be honest more on here knows, I am not going to keep myself ill and I will do all it takes to get better with or without my gp, I was supplementing over 3 months with these only took max 4 days of to have the tests, my gp new I was supplementing and said I should carry on, funny thing is when I mentioned my new results I pulled out my supplements and said look my b12 is the highest you can buy at 5000mcg I said who would know where my levels would be if I was never supplementing, she gave me the story about menstral cycles which I don't get, and still couldn't say nothing other than we will have to do one symptom at a time and send you to specialists! first stop neurologist lol x

[Hidden]

I can't tell you how much your story depresses me. Think how much a neurologist costs the NHS versus a vitamin shot that costs less than £1 per ampoule. It beggars belief. Can you see a different GP at the practice? Someone else might be open to trying a trial of B12 shots on you to see if it makes any difference. Who does your sister see - is she nearby?

On the plus side if your GP is sending you to a neuro they might be more clued up on it.

My knowledge is limited to my own experience so I think you would benefit from advice from the PAS or b12d.org - you need to go to that neuro armed with plenty of information.

[nichola79 in reply to Hidden]

I didn't even know what a neuro done until I looked lol, deals with nerves and that right? my 2 sisters levels was actually low enough to start them on the jabs, in a way I wish I never started supplementing as I believe mine being 245 last august if I never supplemented my levels may have been low, I have managed to get my folate up from 4.6-6.6 and I stated this to my gp, I don't think the supplements are going fast as the jab would, I was going to ask her at least for a trial but she was clearly thinking of maybe the secretary bringing her next cuppa in lol.

I have another surgery just up the road from the other one so im debating moving to that one? x

[Hidden]

Getting a proper diagnosis is really important, I can't stress this enough. Self treating with supplements can cause more damage - you shouldn't really take folate without addressing low b12 levels for example (if you look at your folate supplement's instructions it should say that). Please phone the PAS for advice about dealing with your situation (number on website). I don't know what else to say really.

[nichola79 in reply to Hidden]

pas what that? and I take b2 with folate x

[Hidden]

Pernicious Anaemia Society.

This is their website:

pernicious-anaemia-society....

You have to be a member for some parts of the website, but you can definitely read a lot of stuff about B12 deficiency without joining. You can also read the forum - check out the section called "My Story" and you will see that you are not alone. Click on a few stories and read them, mine is posted under "Hampsters Story".

Try their symptom checklist:

pernicious-anaemia-society....

They have a phone number in the Contact Us section. I really think you and your sisters would benefit from this extra info on B12 deficiency.

I hope I'm allowed to post these links - sorry to admin if I'm not!

[nichola79 in reply to Hidden]

thanks I appreciate that x

[nichola79 in reply to Hidden]

I received a letter of dr p

dear Nichola thanks for your test results, its difficult to fault the tests you've sent me (maybe as they never had many ranges on them!), although raise mcv suggests that your b12 may not be doing its job properly i think you should consider additional b12, nutri do a excellent oral one called intrinsi b12, folate perhaps two a day. i was supplementing 5000mcg b12 and using the vegetarian folate from the tpa shop.

do this mean i need more b12 and should i fight for the injections? x

[Hidden]

Who is Dr P? Sorry, I'm quite new to this forum.

A raised MCV is usually indicative of a vitamin B12 and/or folate deficiency. It means you're red blood cells are enlarged. What was your MCV and when was it tested, before or after you started taking supplements? Is your GP aware you have a raised MCV, and if yes, what did she say about it?

B12 and folate deficiency are medical conditions that need proper treatment from a doctor if possible, not self treatment with over the counter supplements.

It's really important that you fight for this Nichola, did you manage to look at the website links I posted?

[nichola79 in reply to Hidden]

Yes I did go over to the website and read your story, my mcv was 95.9 with no ref range my gp didn't mention anything about my blood results x

[nichola79 in reply to Hidden]

Dr peatfield sorry didn't realise you were fairly new x

[Hidden]

MCV ranges do vary - the last test I had done had a range of 76 - 100. So you are probably top end of the range but just within it. When it comes to the MCV, B12/folate deficiency push it up, iron deficiency pushes it down, so if you are deficient in all 3 they can cancel each other out and your MCV appears "normal".

When are you seeing the neuro? It's good that you'll get fresh eyes on your problems. Make sure you mention your B12/folate concerns, potential neuro damage specific to this deficiency is explained here, maybe bring some articles about this with you:

nlm.nih.gov/medlineplus/enc...

What about your Endo? Have you ever been tested for thyroid antibodies? Your Endo might be willing to do the gastric antibody tests on you - Intrinsic Factor and Parietal Cell antibodies. Do you have gastric symptoms (bloating, gas, constipation or diorhea, nausea)?

[nichola79 in reply to Hidden]

I do get the bloating yes, I wont see my endo for another 6 months now I think, I suppose I have to wait for my appointment to come through for the neurologist, she has sent me to him because she has given me a diagnosis of fibramyagia x

[AndreaM in reply to nichola79]

Nichola - Hampster has given you good advice. If you are unable to join the PA Society at the moment (although you can still read the posts) you can ask to join this Facebook page where you will receive help from some of the same moderators and members: facebook.com/groups/1749289...