Blood tests said to be routine when on regular ... - Thyroid UK

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Blood tests said to be routine when on regular medication

Caroline888 profile image
15 Replies

I have received a letter from my surgery asking me to arrange an appointment for blood tests as follows:

Vitamin B12

Folate

Full blood count

The letter says regular tests are extremely important with certain diagnoses. Has anyone heard of this before? And are the above tests usually carried out regularly on the NHS following a diagnosis of hypothyroidism. I was diagnosed about 20 months ago.

I am making an appointment today and am wondering if it should be early in the morning as with thyroid blood tests and with fasting or if the time of day is irrelevant in the above cases.

Any advice would be greatly appreciated.

Best wishes

Caroline

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Caroline888
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SlowDragon profile image
SlowDragonAdministrator

Perhaps, at long last, they are realising anyone on Levothyroxine needs vitamins testing regularly

This should include vitamin D and ferritin as well

Ferritin may be included in full blood count

Not sure if time of day matters with full blood count. Time doesn't matter for folate or B12

Caroline888 profile image
Caroline888 in reply to SlowDragon

Thank you so much, SlowDragon, for your quick reply.

I am not used to getting blood tests done without specifically asking for them so was momentarily a bit alarmed by this letter.

As you say perhaps they are becoming more aware that vitamin levels do matter.

My vitamin D was tested at my request last September and was 108 nmol. I had ferritin tested by Medichecks and it was a bit over 70 which I know is not great but I'm working on it.

So do I need to fast for the blood test for B12, folate and full blood count?

I could ask at the surgery but, as we know from thyroid blood tests, they don't always give us the right answer.

Thanks again for replying to my post.

Best wishes

Caroline

SlowDragon profile image
SlowDragonAdministrator in reply to Caroline888

Probably not necessary to be early morning or fasting unless you suspect they might sneak in an unexpected thyroid test!

Caroline888 profile image
Caroline888 in reply to SlowDragon

Good point! Thanks SlowDragon.

Have just looked at an attachment to the letter which I have to take with me to the phlebotomist and it only lists those three things for testing so a sneaky thyroid blood test is probably unlikely. Still worth remembering in the future.

Thanks again.

Best wishes

Caroline

in reply to Caroline888

At the beginning of the year I received a letter for a patient review from my surgery.First I had to book a blood test and then a follow up appointment at my surgery.

I personally put a cross by the vitamin boxes, which weren't crossed ,had the blood test and then went for the appointment at my surgery.

I saw someone I didn't even know and asked why there had been CVD on my blood test form? She said,that it was my thyroid that was the main reason for the review.

I asked for the results of TSH,FT4 and FT3........FT3 hadn't been done!!

" But I take T3,so that's no help to me" .........no answer!!

Therefore,my advice would be to make sure that everything relevant that you would want results for is ticked on your form and also ask for a printout of the results when all is done,so that you can keep your own records.

It is good that these annual reviews are now being done,but not much use to us if they don't give the complete picture !!

Caroline888 profile image
Caroline888 in reply to

Thanks very much for replying to my post.

Yes, it does seem good that they are doing these tests to monitor a diagnosed condition. However I would prefer they forget about me when it comes to testing TSH, FT4 and, if you’re very lucky, FT3, as, as we all know, GPs generally don’t know how to read the results and we often have a fight on our hands when they want to reduce our levothyroxine and we know that we would do better if left alone or even given an increase.

I regularly use Medichecks and prefer to adjust my dose of levo accordingly with the help of the experts on this site.

Thank you for telling me of your experience and that your review was motivated by your thyroid issue. I am now quite pleased that they are going to do these blood tests - as long as they forget to check my thyroid later in the year! Well I can hope can’t I?

Hope you are managing your condition well with T3.

Best wishes

Caroline

in reply to Caroline888

Hi Caroline,.........good to hear from you.I neglected to say to you that my GP referred me to an Endocrinologist at our local hospital over 5 years ago .......yes because he was out of his depth with my Thyroid problem and also I had joined TUK and another member in Essex had recommended the Endo.So I have been fortunate to get support on my thyroid journey.

It was my Endo who suggested I tried some T3 and my GP has continued to prescribe it for me ever since.

Oh that it was the same for everyone.I wish you well x

Caroline888 profile image
Caroline888 in reply to

Hi Marfit,

Good to hear from you too! And to learn that you have been one of the fortunate ones who have been treated properly. I am so pleased for you😊. I have seen that it can be a nightmare for so many who need T3 but are unable to convince their GPs to prescribe it due to the exorbitant cost.

I hope you continue to do well.

Best wishes

Caroline

in reply to Caroline888

Thanks Caroline.Maybe I should add that I am only prescribed 10mcgs of T3

(along with my 100/75 mcgs T4) If I needed more T3 I've been told I will have to source it myself.Well,I'm only 78 years old........perhaps I should dust off the passport !!

Caroline888 profile image
Caroline888 in reply to

Dusting off your passport sounds to be an excellent idea! At the prices I've heard mentioned for T3 you could most likely get a week's holiday abroad AND come back with the T3 you need. Some research is called for I think😊. I have no idea which countries have it available but no doubt other members would know. Still, hopefully you won't need more than the 10mcg you are already prescribed, but if you do, well, what better motive could you have for an adventure!

All the best anyway

Caroline

SeasideSusie profile image
SeasideSusieRemembering

My surgery doesn't do them, never had them in 45 years of having a hypo diagnosis. They don't even contact you to arrange an annual blood test any more, it sometimes gets mentioned when I'm there for something else.

crimple profile image
crimple in reply to SeasideSusie

Post code health lottery strikes again!!

Caroline888 profile image
Caroline888 in reply to SeasideSusie

That’s interesting Susie. I have always understood that we have to have annual blood tests when diagnosed with a thyroid problem. I do hope they forget me too!

Thank you for replying to my post.

Best wishes

Caroline

SeasideSusie profile image
SeasideSusieRemembering in reply to Caroline888

Yes, we are supposed to have annual tests, and I used to have them regularly. But I live in Wales (oh, don't get me started on NHS Wales :( ) and our surgery is dreadful anyway. I'm perfectly happy not to be reminded about them, if fact when I've been about something else and the GP - who for some reason always looks at my results and mentions my suppressed TSH, prompting the futile discussion about FT4 and FT3, etc - mentions that I'm due for a test and gives me a slip to book one, somehow between leaving the consulting room and going out the main entrance I seem to forget to book it :D

I do my own tests with Medichecks or Blue Horizon (because I add self sourced T3 to prescribed Levo, which the GP doesn't know about) so I keep an eye on everything. And of course, the GP forgets that she told me to book the test!

Caroline888 profile image
Caroline888 in reply to SeasideSusie

That's great! You've got it well sorted.😊

Once diagnosed and a member of TUK, we really don't need to expose ourselves to the ignorance of GPs do we? We really have enough to contend with without the endless battle with a GP who thinks he knows it all and in fact knows very little about the thyroid. The best hope of proper treatment is if the GP or his family have a thyroid issue. Then they will surely become somewhat of an expert in the same way as we do when we are diagnosed.

At the moment I am able to adjust my dose of levo myself with the help of Medichecks blood tests and advice from this site. Currently I am on a relatively small dose so have no trouble with supply but the fun will begin if/when I need to up my dose further.

I am so glad that you have it all worked out and hope you are coping well and enjoying the warmer weather.

Best wishes

Caroline

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