I was due a TFT but as I'm in full lockdown I am reluctant to go to the Practice Nurse.
I completed a Medichecks test on Monday and got the result back this morning. I emailed the result to my Endo's secretary and got the response I was expecting, which is that they can't use any test not done in an NHS lab. They also commented that they "can't titrate meds based on a finger prick test".
Is there anyone who can tell me if there is a genuine reason why a finger prick test may be unreliable?
I'm now in a position of having to guess what to do regarding my meds. I have Graves' and am currently on 10mg carbi per day.
March bloods were TSH 0.01 (0.5-4.40) ; FT4 20.7 (10-20) ; FT3 5.6 (3.5-6.5), current results in attached pic.
My immediate instinct is to drop the dose to 5mg a day. Any advice gratefully received.
Thanks, it's good to have some input, feeling a bit cast adrift.
Generally I'm feeling pretty good, thanks. Quite tearful, but got some personal stuff going on, also the general state of the world is enough to drive anyone to snotty sobbing.
Well, yes, considering all that's going on, glad to hear you are doing ok.
Did you also get some numbers for your ferritin, folate, B12 and vitamin D. ?
These need to be maintained at optimal levels to keep your core strength strong and solid during this phase.
I've just reread your posts as your name rang a distant ' bell ' and noticed that you too have such a ' helpful ' doctor, and have had to get your own antibodies tested to confirm your diagnosis of Graves which was my question to you over a year ago !
So, now you know, you might like to take a look at the Elaine Moore Graves Disease Foundation website, if you haven't found it already.
This lady has Graves Disease and was treated with RAI thyroid ablation back in the 1990's. On finding no help with her continued ill health, and being a medical technician she decided to start researching Graves for herself and then she wrote a book to help other people who might be in the same position. Roll on some years and she now runs a well respected and researched website in the States, which has a world wide following, and there is an open forum, much like this amazing site, where you can ask questions of the community and also contact Elaine direct, should you wish.
Yes, you've given me good advice in the past, thanks for that.
Hope all is good with you at this strange and horrible time.
It's too long since I've had vitamins tested, SlowDragon's response below has prompted me to make the decision that when I need to get my TFT done again in 2 months I'll get the Thyroid UltraVit test from Medichecks. I'm really struggling for money at the moment, though, and resent the fact that I'll have to pay so much, not to mention any extra supplements I end up needing.
One reason I'm skint is that I stockpiled BetterYou D3+K2 spray because I thought it might become something that everybody suddenly wanted to boost their immunity and it's the one thing I won't go without. Promise I didn't panic-buy toilet rolls, though
I have been reading Elaine Moore's website recently, there's a lot of information to take in and my brain's a little foggy (maybe due to the slide towards being hypo, which I'm definitely not used to) so I'm taking it slowly.
There is a lot to read and understand and I find her website easier to understand, though I started off with her book, as I wasn't with a laptop, and put bluntly without this website I would be unwell, on anti depressants, undermedicated on Levothyroxine, housebound, and with by now, I imagine copious other health issues.
I had RAI thyroid ablation in 2005, which I deeply regret, and became very unwell some 8 years later.
I now self medicate and buy my own full thyroid hormone replacement, and I am much improved and getting back to being ' me ' even in this surreal time.
I have had to learn of my situation back to front and you are much better placed with information overload, and it does sink in, even with that awful brain fog of hypothyroidism, it's just a question of remembering it, and finding the right words to explain oneself in a clear and precise manner.
Thank you for your concern but all I was really asking here is
- is there any reason to suppose that fingerprick (multiple drops in tube) tests are less reliable than IV blood draw - I've since read some old posts which suggest that they are not
- If you had results like my recent ones would you feel that a decrease from 10 to 5mg was a reasonable course of action
Incidentally I've just noticed that Medichecks has Thyroid UltraVit on offer today so have ordered it to use for my next 2-monthly TFT
Sorry no experience of a Graves ...I only have Hashimoto’s..so never taken Carbimazole
I have used both finger prick and private blood draw. No apparent difference in results
I understand from reading on here that with a Graves and Hashimoto’s that some patients are prescribed block and replace....Block with carbimazole and replace with levothyroxine
pennyannie may know more about that
Getting vitamin levels tested and optimal frequently helps, as does strictly gluten free diet for very many, even if it’s only slow reduction in antibodies
No, sorry, I can't help with this as when I was diagnosed at age 56 in 2003 I was only treated with Carbimazole and told at the very beginning that even if I was well on the AT drug I couldn't stay on it over 15 months and I would then have to have RAI thyroid ablation. I didn't question anything, and told nothing of the consequences of RAI and sadly being dyslexic, picking up a book, let alone a medical one, not really on my radar, at the time.
I was in a state of shock, and having been attacked by a man I employed as my assistant manager, in the throws of disciplinary action with him and my company.
Had I known then, what I know now, I would have walked away and saved my health.
I only learnt of the alternatives, and so much more, when I came on here for help some 4 years ago, and I seriously believe the treatment given was age dependant.
Yes, apparently I do, although endo refuses to acknowledge or discuss what this means.
No vit tests recently as I'm struggling financially, but have just ordered a Vit D test from Birmingham Assays.
Last vit tests early 2019, B12 : 464 (190-800), Folate : 6.5 (3-17), Ferritin : 113 (12-300), Vit D : 103.6 (50-220), so not great but not too scary.
Tried GF for three months this time last year and genuinely didn't feel that it made any difference ; my levels remained pretty much the same (just above range but not outrageously so) and I didn't feel any better. In fact I felt pretty miserable on a trip to Paris ignoring the croissants.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets and not too expensive . Often only need one tablet per day, not two. Certainly only start with one tablet (or even half tablet) per day after breakfast. Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
I do have some Thorne Basic B which I take intermittently - I stop taking them at least a week before every TFT and invariably forget to start again until it's nearly time for another TFT
Thanks
Looks like we just cross-posted , see my response above
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