I am so frustrated!!!!: As some of you might... - Thyroid UK

Thyroid UK

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I am so frustrated!!!!

cheesephetamine profile image
9 Replies

As some of you might recall, I got my first bloods from thriva back on Sunday with a TSH of 37.7 and an FT4 of 7.7. Very hypothyroid...

I called my NHS GP on Monday, and she put me on 25mcg Levo and asked me to get blood re-done at the surgery for the same markers plus antibodies. I was bled yesterday, and today I got a call from the surgery saying that my bloods came back and unable to process (i guess the sample was coagulated or something of the sort...). They booked me again for bloods on... THE 3RD OF JUNE! I offered to send my own bloods as I work in another surgery and I can send bloods to the same lab with the doctor code, so it will be processed exactly the same way but sooner and they refused!!!! and they told me to call on Monday as the doctor wants to talk to me (unsure as to what about exactly, as she does not have any other tests but anyway!)

So I have just ordered the full thyroid panel from thriva (the one with the FT3 and all the antibodies etc) as I want to know for myself asap although I know my doctor will still want to go by the NHS bloods.

I also asked for all the blood tests I had done since I live in England (2015) to be printed out "for my own records". The lady was like: but all were normal no action needed! I said, I still want them for my records. So she agreed and ill go pick them up on Tuesday.

Question; will the results be very manipulated by being 1 week on 25 mcg and 1 week on 50 mcg of Levo? will the antibodies still show (if I have any)?

Question 2: I have realised I have a continuous feel of having a sore throat, a lump (like when you are going to cry) and sometimes when I eat or drink I choke on my food. I also feel like someone is choking me when I lay my head back. Is this normal? am I just making things up?? I am not sure if I am getting paranoid or not... and now I think that all I feel is related to my thyroid! XD

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cheesephetamine
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9 Replies
greygoose profile image
greygoose

Doctors can be so illogical at times!

1) I very much doubt that one week on 25 mcg levo and one week on 50 mcg levo will have much impact on a TSH of 37.7! And, I can't really understand why she wants them done. What is she expecting them to show? It takes at least six weeks on a steady dose to see the full effect of that dose.

2) No, you're not making it up. Those are typical hypo symptoms. I've been on thyroid hormone replacement for twenty years - most of them on T3 only - and my treatment is about as optimal as I can get it. But, I can still choke on my own saliva! Most embarrassing and disconcerting for other, but not fatal. :)

cheesephetamine profile image
cheesephetamine in reply togreygoose

She wants them done to check antibodies which were not checked on my basic health check on thriva and because, her words, not mine, "we need to check it with an nhs laboratory to make sure the results are accurate".

even though thriva in theory is accepted by nhs...

Im getting the full panel done next week anyway, i m not waiting that long

greygoose profile image
greygoose in reply tocheesephetamine

Oh, so it's just the antibodies that are being tested? Really not much point in testing the rest. I understand you're impatient, but really, what do you think a blood test is going to show you after only three weeks? It's just a waste of money. With a TSH that high, it's obvious your FT4 and FT3 are going to be low. And, there's no way you can speed up the process.

To answer your question about antibodies - which I forgot above - antibodies are not affected by taking levo. However, they fluctuate, so they might be high or they might be low. If they are high, you have Hashi's. If they are low, it tells you nothing at all.

cheesephetamine profile image
cheesephetamine in reply togreygoose

she is testing tsh and ft4 too cos she obviously does not trust the thriva results... I doubt she will do ft3. And i want them done cos being a nurse i really want to have a record of how things are going, as said, for my own records. I know nothing will change and i will carry on on levo etc but its a matter of needing to know. I don't expect people to understand me :D I am a bit of a geek and a control freak unfortunately for me

greygoose profile image
greygoose in reply tocheesephetamine

Yes, that is unfortunate, because at the moment, there's nothing much you can control.

SlowDragon profile image
SlowDragonAdministrator in reply tocheesephetamine

essential to test vitamin D, folate, ferritin and B12 too ...hope you included those

Make sure to get tested as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

cheesephetamine profile image
cheesephetamine in reply toSlowDragon

I am getting this one done: thriva.co/tests/thyroid-test

in reply tocheesephetamine

"Its a matter of needing to know. I don't expect people to understand me..."

I'm like that too. Not sure about the control freak part but if I want to know I HAVE to KNOW!!! As a small child I once asked my mother "How is a crocodile made?" and was astonished when she said she didn't know. If a child asked me that now I would look up "Crocodile anatomy" and explain what it all meant!

Angel_of_the_North profile image
Angel_of_the_North in reply tocheesephetamine

It's no wonder that the NHS is always complaining about shortage of money when doctors have that attitude. We spend our own money on tests from accredited labs and then the NHS insist on wasting money to do them again (and usually not all of them). Ah well.

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