Be prepared… A rant it’s on its way to you. Sorry 🙊
I finally managed to see a GP and “discuss” my blood test results.
I went in armed with the following print outs
- Last 4TSH results spanning over a year (all at least 3 months apart)
- Hypothyroidism symptoms checklist
- NICE guidelines on Subclinical Hypo (which clearly state I should be given a 6 mo Levo trial IF I have out of range TSH at least twice tested 3 months apart)
- NICE guidelines if trying to conceive (clearly stating Levo trial and wait to conceive until stabilised)
- NICE dosing guidelines ( to make it easier and I’ve noted down weight and advised dose calculation)
All of the above were with pink highlighter to draw attention to the relevant short paragraphs.
I explained ALL of my symptoms (basically… 70% of the checklist!) and how I cannot physically function and that I am struggling to work and that I am self employed and if I do t work… there’s no one paying the mortgage, paying the bills or buying groceries plus the real fact that I don’t feel a fully functioning human.
And I was met with (after a bit of back and forth):
GP: I don’t care what you tell me or show me…
You’re not walking out of here with a Levo prescription.
GP: your TSH it’s low and your FT4 is in range.
Let’s re-test your antibodies as that will tell me if your Thyroid will fail in the future but not now, so we can address it then.
That’s not what the antibodies are actually telling you.
Also, that’s not what the NICE guidelines say to do.
I am not a functioning human, I cannot even get out of bed.
I was also getting my health in a good state so I could try to conceive.. for which the guidelines again state trial of Levo is way forward.
If you decide to ignore, this may mean I may have to delay trying to conceive for months and Months to come. As it may take several months until you’re settled on the right Levo dose.
GP: it doesn’t take months. Just give you a dose, and check again in 2 months and you’re good. Plus you’ll need more in pregnancy. Plus repeat of the first two answers.
Me: Respectfully, I disagree based on the very many people I spoke to (having this forum in mind). Also, why are you going against NICE guidelines?
I clearly have a good case for a trial which may significantly benefit me, even if you forget pregnancy.
I don’t mind doing as many tests as you want, but I have an issue with having to have months from now (wait until results come back, after you obtain a blood test, and it’s impossible to get an appt as they only offer emergency ones in the morning, which are very hard to get). I’m at a point which I am struggling with day to day living.
(Also GP didn’t advice anything in regards to low cortisol - I made sure of pointing it out and she dismissed it).
Also, the Lab completely ignored this exact test request…. So… 🤷♀️🤷♀️🤷♀️
GP: Well, the guidelines aren’t rules… they are there as a guide.
Me: Well… I disagree, guidelines are exactly that. They are meant to be read and followed.
You’re choosing to ignore them at the detriment to the quality of my care.
Also the antibodies wouldn’t be telling anything special anyways other than distinguishing whether or not my Hypo is Autoimmune or not and the treatment would still be the same. 🤦🏼♀️🤦🏼♀️🤦🏼♀️🤦🏼♀️
GP: you’re not walking out with a prescription.
I felt furious and ignored.
We go back at blood tests again while I don’t know what to do with myself to even do the most basic tasks in my day, coz all I want to do is lie in bed, watch Netflix and drink coffee.
On another note she did ask advice to local Endo as to how to proceed with my case.
Also had a call with my diabetes Endo as it was due and they at least prescribed a SST ( Short Synacthen test) as they thought my cortisol of 166 (178-556) at 8am was possibly concerning!
So now I’m back at repeating FT4 and thyroid antibodies! 🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬🤬
If you reached here…. You’re a gem!