Waiting to see an NHS endocrinologist, should I get some bloods done privately first

I went to the doctors yesterday and got her to do a referral but I'm wondering if I should get some bloods done privately first. My blood results look odd to me (although doctor doesn't think so) and although she's agreed reluctantly to put my levo back up for the time being I feel there's an underlying problem. I did say I need some more tests but she just said that's beyond my remit, she didn't even ask what bloods I meant. Does anyone know how to get bloods done privately and which ones would be the most important? The doctor did TSH, Free T4 and Free T3.

Thanks Shaz

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  • If your endo is any good he will order the tests he thinks are necessary plus he might not even take notice of private blood tests so you may spend a lot of money for nothing.

    I had my first endo appt last week and the amount of blood tests he ordered was unbelievable. I've been used to pleading and begging for test from my GP and to have so many tests ordered in one go was really encouraging. I would wait until you have had your appt and then if you are not satisfied with the tests he has ordered then have what you think he has missed done privately and tell him that this is what you intend to do, asking him at the same time if he would take any notice of the results.

    If I were in your shoes I would do as much research before the appt. Ask loads of questions on here and try and work out what tests you want and then ASK him for them. This is what I did and it worked a treat. I told him I thought my adrenals were not working properly so he ordered an adrenal test, I told him I have gone wheat free as I might have a wheat intolerance so he ordered a ceoliac test - and so it went on.

    If you are still determined to go down the private route here is a link to the main thyroidUK website re testing.

    thyroiduk.org.uk/tuk/testin...

    Hope this has helped.

    Moggie x

  • Thanks Moggie that's really helpful, I suppose I'm just frustrated at feeling so bad and wanting to get some answers quick. The doctor has no idea how long I might have to wait for an appointment and as it's an NHS Endo I imagine it will probably be a while from what other people say. The adrenal thing is interesting as I've been under a lot of stress for about three years and from what I've been reading cortisol can suppress TSH. I had a ceoliac test done last year and the result was 3.72 (range 0.8 - 4.0) but the doctor said it was negative. I'm wondering now as the result is close to the top.

    Thanks again for your help Shaz x

  • You can always phone the hospital once the referral has gone in and try and hurry things up. This is what I did and it went from 2 months to one day!!!! Just goes to show what making a bit of fuss can do.lol. Also it might be handy for you to ask for a copy of your GP's referral letter to see exactly what he has written.

    Moggie x

  • Could you post your results and then we will be able to see why you think they are odd.

    Moggie x

  • Sorry I did post them originally on another question but forgot to include them this time - my original results were TSH 0.02, Free T4 16.8 (11 - 23) and Free T3 4.2 (3.9 - 6.8) on 125mcg Levo. The doctor reduced this to 100mcg because of the supressed TSH and did a re test after a month. The latest result was TSH 0.04, Free T4 15.4 and Free T3 4.1.

    It looks to me as if the TSH is being supressed other than from the levo as the T4 and T3 are not high and all my symptoms point to Hypo but she didn't agree. I've been told I have chronic Fatigue, previously told I had Fibromyalgia, depression and carpal tunnel syndrome. For the last 10 months I've been getting severe migraines as well which low dose Amitriptyline had sorted but since reducing the Levo they have started coming back as well. All my symptoms have gone considerably worse since reducing the Levo the doctor just thinks I'm blaming everything on my thyroid. She wanted me to wait another two months then have another test.

  • Your numbers look as odd as mine... TSH 0.13, Free T4 14.4 (12-22) and Free T3 4.3 (3.1-6.8). It will be interesting to hear what the specialist makes of it in your case! Please do post back and let us know!

  • Hi Sparr0w, I will do, hopefully I'll get someone who isn't just interested in the TSH level and not why it's so low in the face of so many hypo symptoms.

  • Just been looking at your previous questions and noted that you say your VitD was low and it was sorted out. My VitD was sorted out in June last year but it looks like it has plummeted again so if I were you I would be asking for a re-test. How did you feel once your VitD was sorted?

    Moggie x

  • I had the Vit D this last time and the result was 123.1 (50 - 150) so that looks to be ok. I was having lots of pain in my joints especially feet and legs before the diagnosis and that resolved after the high dose Vit D the doc gave me. I started taking 5000iu myself after I'd used the ones from the doc up and only stopped them about six weeks ago.

    Shaz x

  • That would be one of the tests I would be asking the endo for plus a parathyroid test. Have you ever had this done? and what is your calcium looking like?

    Moggie x

  • I had the Vit D test this last time and the result was 123.1 (50 - 150) so that looks to be ok. I was having lots of pain in my joints especially feet and legs before the diagnosis and that resolved after the high dose Vit D the doc gave me. I started taking 5000iu myself after I'd used the ones from the doc up and only stopped them about six weeks ago.

    My calcium is fine and I previously had the PTH done which was normal. Hopefully when I see someone they can do all the tests again plus some extra ones, adrenal etc.

    Shaz x

  • Here is a list of tests my endo order for me last week (the one's I can remember anyway).

    TSH, B12, VitD, Adrenal, Ceoliac, full iron panel, FT3, FT4, Parathyroid, FBC, bone scan, heart scan, antibodies, U's&E's (I think that's what it was) and other that I have forgotten - I'll let you know what they are when I get the results so that you can ask for them when you see your endo.

    The heart scan is due to my palps and the bone scan is due to me having an early menopause so I wouldn't think your endo will order these.

    Have just had an interesting phone call from the hosp - they want me in for the morning to so a "short synacthen test" as the bloods my endo took have shown up possible adrenal problems. Just goes to show that having a shed load of tests done( tests that I asked by GP for over a year ago and she refused to do) can bring dividens.

    Hope you find a good endo who is willing to help you as much as mine has helped me.

    Moggie x

  • Thanks Moggie, I'll copy the list of tests and see if I can get them done by the Endo. Please let us know how the adrenal test goes, that obviously impacts on thyroid. It sounds like you might have found someone who looks beyond the obvious.

    Good luck with the test, hopefully you'll get some answers.

    Shaz x

  • Thanks Shaz,

    I have managed to get copies of ALL my blood tests that the endo ordered for me from the hosp (and that took a bit of presuasion) so when I pick them up on Wednesday (have now been called in for my bone scan as well - it would be easier for me, at the moment, to book a bed.lol) I'll let you know exactly what I have had done.

    Some results came back yesterday via a letter from the endo, I am low in VitD AGAIN and low in Iron. Not had very good feedback on this site regarding the adrenal test as they hardly ever seem to come back out of range (even though you have problems) but well see.

    Will give you the full list on Thursday. Have a nice weekend.

    Moggie x

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