I am being my own thyroid advocate! Thanks to everyone’s advice. Still in the process of finding the right dose for me and Levothyroxine is being upped incrementally.
So I’ve had an NHS blood test with vitamins and just for my own interest I had another blue horizon one which agreed very closely on the results and, for me at least, showed they were comparable.
I was waiting for the surgery to get back to me. Even though I did my private test three days later I got the results back the following day (Tuesday) which confirmed what I already knew - I needed my meds upping. So I did as I’d been feeling rough anyway. I went online on the Wednesday to see if NHS results were back. They were. I gave it a day then phoned surgery- Thursday. I told the receptionist that I had phoned up about my blood test results and she looked them up and said oh yes they are normal. I told her this was normal perhaps for someone who wasn’t on thyroid medication, but not for someone who suffers with *hypothyroidism. I also told her I was into my third week of being hypo and needed my medication upping (obviously didn’t tell her I already had!). I told her the endocrinologist had advised the range which was on the system and I was still above it. The fact that it said normal on the system suggests that it doesn’t get flagged to the doctor when the tests come back and this potentially is how people slip through the net
**** I am raising this so that other people know.
I got put on triage to speak to somebody - got a call! I explained to an advanced practitioner about ranges about what we should be aiming for re my optimal dose and I explained about being into my third week of being hypo (described symptoms) and that an eight week gap between blood tests was too long as it would basically assigned me to being hypo one months out of two. Two weeks as the effect of the raised dose wore off and then potentially another two weeks before any benefit of the next medication increase kicked in.
I advised that I needed six weekly blood tests rather than eight. He did not contradict me in anyway - he got new prescription signed off with a triage GP and they did not push back on anything I said, because I was solid in my knowledge THANKS TO YOU GUYS! 😘👍
I think this demonstrates though that anyone who hasn’t read a good deal up on the thyroid and scientific papers around it could so easily been maltreated just through general medical ignorance.
It is concerning that this arbitrary labelling of tests as normal means follow up is not flagged.. If the surgeries are using this automated system to flag further treatment, it just goes to show there could be plenty of people falling through the net. You just have to be your own thyroid advocate.
There also seems to be a general ignorance on how ranges differ for those who are normal and those who are hypothyroid. I’m sure this problem exists with other conditions as well.
Thank you so much for all the help you guys have given me and I continue to grow and learn and I have already alerted a few people to this site through general discussions. ❤️
Written by
Charlie-Farley
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I know the failure of the medical professionals to diagnose a patient who has a dysfunctional thyroid gland (as our old-fashioned doctors used to before blood tests were invented ) when the person first attends the surgery through signs/symptoms.
Before blood tests were introduced (pots of money for Big Pharma) all doctors could diagnose a hypo patient, just by aknowledging some clinical symptoms and we were given NDTs (natural dessicated thyroid hormones) until our symptoms resolved.
No blood tests were needed. Unfortunately, NDTs were withdrawn a couple of years ago from being prescribed - despite its use since 1892 and was the vwey first first replacement which prevented people dying awful deaths.
Unfortunately, our 'learned professionals' withdrew this as it did T3 some months ago.
NDTs contain all of the hormones a healthy gland would do. Those who I'd imagine would know better than non-medical people do not. They have no clue what best to do except to keep the TSH somewhere in the range.
That's why this forum is so helpful and quite a number are so knowledgeable they could set up a clinic and relieve clinical symptoms quickly. The only problem now is that replacement hormones have become more difficult to source or get prescribed.
Thanks for posting your thyroid history and it was very informative re your family's history too. My mother had pernicious anaemia and for years was given a quarterly B12 injection until at one consultation was told she needed no more injections as bloods were 'fine'. Both my sister and I thought that was 'good' but little did we know the suffering and distress which would follow as my mother got stomach cancer through not having injections.
Both my Sister and myself didn't know what was ahead as at the very later stages they wouldn't provide sufficient pain relief until we demanded it. Not good enough.
The fact that it said normal on the system suggests that it doesn’t get flagged to the doctor when the tests come back and this potentially is how people slip through the net
It is concerning that this arbitrary labelling of tests as normal means follow up is not flagged.. If the surgeries are using this automated system to flag further treatment, it just goes to show there could be plenty of people falling through the net
At my surgery, and I would assume this is a general thing, a doctor must look at the test results before they are released to the patient in any form. This would mean that it is the doctor who decides that a certain result is "normal - no action" or otherwise. We are contacted if the results come back out of range or if the doctor is concerned, but not otherwise.
Sorry, but to be clear, is this really what you meant to say?
"....told her this was normal perhaps for someone who wasn’t on thyroid medication, but not for someone who suffers with hyperthyroidism. I also told her I was into my third week of being hypo ..."
I'm confused too, I have hyperthyroid too and feel really drained past few days. Surely if meds are upped this will only decrease activity more and make more hypo? I have a blood test sat so I will find out more soon (So if my meds are increased my thyroid activity would be slowed down more. They've slowly reduced down to 10mg carbimazole atm)
I would have thought you would want meds reduced not upped but then I am super drained lol so excuse me, but this post made me so confused! I looked up Levothyroxine and this is normally used for an underactive thyroid! I believe the poster meant to say they have hypo not hyper as this would make sense.
Hi Jo. That's what I assumed too, but lack of clarity confuses members....maybe I should just have been blunt and said, edit your post.Or, maybe I'm just an old pedant!!
Either way, I don't think the OP (or most others) has noticed.
Good for you :)It's horrifying what (doesn't !) happen if you don't know which buttons to push and don't know enough facts to argue your way past the "fobbing off" setting on the receptionists/doctors computer.
Even if it is out of range and flagged up by the lab , they don't always manage to tell you. I once missed levo for a week and a half before a test to see what would happen to TSH, but was told 'normal no action'..
several years later when i got my records i looked this test up ....
Great news Charlie- Farley; self- advocacy is fantastic when you have members here to support you. Joining this forum has been empowering for so many of us!
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