Private test confusion

[Salphy]

Hi,

If someone doesn't mind helping I'd really appreciate it.

I'm looking into private tests and trying to find the cheapest way of getting everything I need. But I'm not quite sure what that is. I'm petrified of needles so looking at finger pricks and my gp can't test certain things like t4 and t3 so if I let them do it I'd still want to go private to get a better idea of what's going on. So I'd rather just do it all in one.

On my last thyroid test the following were out of range so would need these definitely:

Tsh, ferritin, crp, folate, b12, vit d.

I want my t3 & t4 because they were low in range. My thyroid antibodies were also out of range but I don't think retesting is of any benefit?

I've started b12 injections recently. The b12 test I did was serum and slightly low. Do I need to repeat the same test to compare or would it matter if I had active b12 done this time?

The gp said I needed full blood count and test for PA. So I was going to get intrinsic factor (£50) and full blood count (£25) plus the same test I had last time (serum b12, ferritin, folate, crp, vit d, tsh, t4, t3, tt4, tpo antibodies, tg antibodies) (£99)

However I've been looking on medichecks and blue horizon and found well woman checks that combines fbc and most of what i had done last time (minus t3, tt4 and antibodies) but also looks at liver, kidney, proteins, bones, diabetes, proteins, bones, hormones, cholesterol etc: medichecks.com/health-check...

For £149 seems like a good deal?

But is there anything on there that will actually be of benefit to me and diagnosing PA?

On the other hand there a b12 test

Vitamin B12 - Active (Holotranscobalamin), Normal B12 - Regular (Colobalamin), Folate, ferritin and fbc. (£99)

And I've also been looking at the MMA urine test (£119) and a thyroid ultrasound (£130).

I'm just so confused! I could easily spend over £500 on this. I obviously want the best picture of my health but don't want to waste money on things I don't need

If doing intrinsic factor do I still need mma and vice versa? Or is fbc and low serum b12 enough?

[Steap]

You might want to buy some extra finger lances from maybe ebay etc before you do the finger prick tests. I use Medichecks and some of the tests are two bottles that need 5ml in each.

I've needed six lances before and they only come with four.

It took me six fingers of blood to fill both bottles and if you dont succeed the test will be wasted.

It takes a while to do it.

The key is preparation.

Before you do any of this ask your Gp if they'll accept private test results.

Mine won't so even though my b12 results came back really low they wouldn't act upon them.

[Salphy in reply to Steap]

Thanks Steap, I have just spoken to medichecks and they said they'd send 6 lancets for the larger profile which would be 3 tubes. 2 yellow cap on purple. I have used the bh yellow cap and the instructions of the purple were that it only needed to be half filled. But yes I was just looking into buying lancets over the counter as I think that's why I get so worked up about them. Worrying that I don't fill it enough and it's been for nothing.

I'm quite lucky that my gp did start treatment off my last test. I told her I preferred to go private because they do it from my hand. She said if her nurses can do it from my hand would I go there so I agreed. I asked if they couldn't if I could continue private and she agreed.

but the nurses doing my b12 injections also asked why I went private. Gave then the same reason and they said nothing. So I'm assuming they can't or atleast didn't know anything about it.

I also have the leverage they they can't test t3 t4 or thyroid antibodies. So we both get more info from the private tests.

Fingers crossed!

[Steap in reply to Salphy]

If your Gp will do tests but you don't like the needle why not ask for some EMLA cream.

You apply it an hour before the test and cover it with cling film.

It's a local anaesthetic cream that numbs the area so you don't feel a thing.

It also helps you to prepare a little for the procedure so it's easier to cope with.

[Salphy in reply to Steap]

I've tried Emla cream before. It's not the pain I have a phobia of then and can't have that area of my arm even touched. I don't know what it is I just can't stand the thought of it and faint.

If she asked the nurses to do it from my hand and insisted on it I'd use emla cream. I can't explain it, the thought of my hand doesn't go through me as much as my arm. But I'd still panic.

I'd still want to go private too though to find out my t3 and t4. I think it's shocking they can't test it

[Gambit62 Administrator]

As you have started B12 injections it probably isn't worth looking at serum B12, active B12 MMA or homocystiene as the shots are probably going to have affected the results. Serum B12 only really means anything when you are on shots if it comes back low.

If it is more than a week since your last shot it is worth doing the IFA test but please be aware that the test tends to give false negatives about 50% of the time so a negative doesn't actually rule out PA as a cause of the deficiency.

[Salphy in reply to Gambit62]

That's helpful to know thank you I won't waste my money then.

If the IFA test comes back negative would I have to have further tests then or not unless my gp stops the injections?

[Gambit62 Administrator in reply to Salphy]

your GP shouldn't stop the injections unless they have evidence that the deficiency wasn't caused by an absorption problem or that the absorption problem has been resolved - which would generally mean it was caused by heliobacter pylori infection that has been treated.

you could carry on retestingIFA until you got a positive result if it comes back negative but personally I'd rather avoid the expense and rollercoaster that could be repeated tests ....

[Salphy in reply to Gambit62]

That's fair enough thank you. To be honest if she hadn't suggested we needed to test for PA I really wouldn't be bothered. With getting it tested myself I feel a big more like the balls in my court. If it comes back negative I don't have to tell her ive even had it done.

My b12 was only a bit low and I have untreated hashimoto's. My dads been hypo and treated for years. His levels are borderline high but never tested for Hashi's antibodies, t4 or t3 (they can't test these apparently)

Anyway I thought there's a good chance he has Hashi's too if I do and possibly low b12 (or PA). So he asked them to test his b12 but they said it was normal.

But then they said his tsh of 5.4 (upper range 5.5) on 100mcg levo was normal too.

So I don't have a lot of faith in her not stopping them if my b12 comes back raised because of the injections if IFA is negative.

Is there a strong family link? My gran went in hospital a year ago through dizziness, tremor, nystagmus and just generally unsafe at home. It was quite sudden but she's had tinnitus for years, loss of hearing, osteoporosis. They thought it was vertigo but the medication didn't really make a difference. She's still struggling with dizziness and poor mobility now and we've noticed she's got a swollen really red tongue. I don't know if she's ever been tested for b12 but she's at the same gp as my dad who had to ask for it. We are starting to wonder if she's been left with it that long can it be that severe? Her diet and appetite is really poor so that can't help

[Gambit62 Administrator in reply to Salphy]

B12 deficiency gets more common as you get older because stomach acidity tends to get lower as you get older.

There does appear to be a family link with PA but I don't think anyone has succeeded in tracking down the relevant genetic variant/s yet.

There are also strong ties between Hashi's and B12 deficiency