Hi I'm new to all this. Before now I have never worried about what medication I have been prescribed, but then my doctor told me the side effects and I felt I needed to find out more before taking it, as it made me nervous. My TPO is 50 kU/L (0-5.6), TSH .05 miu/L (0-7), T3 5 pmol/L (1-9) and T4 12.4 (4-27). My doctor said she has consulted the specialist and they believe it to be very early Graves and to hopefully stem a full attack they want me to take 5mg of Carbimazole. She said as its a really low dose the is only a slight risk of side effect. I just don't know or probably understand how a specialist can diagnose just by a test result and not seeing me. I also take medication for high blood pressure Amlodipine, Atorvastatin and Apixaban blood thinner, due to a possible TIA back in March which all test were inconclusive for. So don't really want to me taking more if its not really needed.
I suppose I just want some reassurance that this is normal and standard dosage, plus has anyone experienced the side effects and do they pass.
thanks in advance
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Vee1967
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Responders really need to see the ranges for ft3 and ft4 before they can comment. It would be extremely unusual to prescribe carbimazole on surpressed TSH alone if the other parameters are in range.
I think you are right to be a bit cautious about this suggestion it does seem unusual, although it is only a small dose, thats true....
For example , even without seeing the ranges i'd be very surprised if FT4 of 12.4 was above ref range (the lowest range i've seen goes up to 14 0 , and if Trii means FT3 then most ranges for that go to about 6 so it seem unlikely that 5 pmol is over range either.
TPOab's can be present in Graves but don't confirm it, they are usually used to confirm Autoimmune hypothyroidism( hashimoto's hypothyroidism) which often starts with a 'hyper' type phase, but is not true hyperthyroidism, since thyroid is not continually overproducing hormone as in Graves)
If they suspect Graves , they could get the endo to test for the Graves antibodies which are TRab or (TSI). (i don't think GP's are usually allowed to order this test )
I don't know how your ?TIA and blood pressure may be affecting their thinking here, or what your symptoms were that led to this suggestion of taking Carbimazole .......... but on your blood test results i can't see why they would prescribe it, or suggest you have Graves. early or otherwise.
Thyroid Peroxidase (TPO) and Thyroglobulin (Tg) are often positive in BOTH Hashimoto's AND Graves. Hashimotos known as autoimmune thyroid can have phases of transient hyper, ultimately hypo). Graves causes continuous hyper. TPO has higher elevations in hahis.
Graves can only be confirmed by Thyroid Stimulating Immunoglobulin (TSI) or TSH receptor antibodies (TRAb), which are high when Graves is diagnosed.
Your TSH is low but your F?T4 and F?T3 are not high at all.
Carbimazole will lower your FT4 and 3, you will risk becoming hypo whilst taking it.
Carbi works by temporarily stopping iodine being converted to a usable form for the thyroid to make new T4 & T3 once the body uses the existing stores the dose is usually reduced, and regularly adjusted so you are on the lowest dose to remain within range.
The TSH can take ages to respond do not allow medics to dose by this. (Mine starting to rise 2 years on)
5mg is considered the lowest dose available as it’s the smallest dose produced by manufacturers. Some cut the pills to achieve a lower dosage or take on alternate days.
I have never heard it being commenced as a preventative measure.
Ok so looking at the ranges i'm wondering if these are FT4 (free T4) and FT3 results or are they TT4 (Total T4) and TT3 results?
None of the ranges are the ones i'm used to seeing for TSH /FT4/FT3 in UK . Is this NHS test or a private doctor ?
But whether these are TT4/3 or FT4/3 results it's not clear to me why they are trying to reduce your Production of thyroid hormones with Carbimazole when they are clearly well within range.
Back in 2003 I was diagnosed Graves from a single blood test taken at the local surgery :
I had a phone call the following day and returned to the surgery same day, told of the diagnosis and put on Carbimazole :
Considering the current climate I don't understand why the lab just can't run the appropriate tests for Graves, namely a TSI ( roughly translated as thyroid stimulating ) and or a TR ab ( roughly translated as thyroid blocking ) antibody from the original blood test sample.
However your T3 and T4 look at be in the range, though I have to say I've never seen such wide ranges before, and your TPO antibodies appear well over range - are you in the UK ?
Generally speaking for Graves we see very high over range T3 and T4 results - so I'm confused, what symptoms are you dealing with ?
I haven't got any symptoms that I'm aware of. I went to the doctors back in July trying to get off some of my other medication as I believed it was making me feel bloated. So she ran some bloods, then noted that previously one of the thyroid test was high and then it was low. She was just going to put me straight on the medication but decided to run a Antibody test first and wait a response from the specialist before doing anything else. So last week she had all the results wanted and a feed back from specialist, also had an in person appointment so she could physically check my thyroid and eyes, both fine. Currently trying to work out how to attach a photo to show you where I'm getting the figures from.
You can only attach one image to a thread, and that must be the first post - the start of the thread. You can go back and edit the first post to change the image.
There is definitely something wrong with your ranges!
TSH .05 miu/L (0-7)
TSH never starts at zero.
T3 5 pmol/L (1-9)
I have never seen a T3 range that big. The unit suggests Free T3. But the lower end is more like Total T3. And the upper end seems high even for Free T3.
T4 12.4 (4-27)
That would be a very wide range for Free T4. Would be less surprised if the range were 14 to 27.
Do you have any information about which lab did these tests? Does it mention any company name or possible brand name anywhere? The reference intervals (ranges) are extraordinarily wide. Though I completely agree what you typed is what the photo shows.
diogenes - do you have any knowledge or view on these very unusual ranges?
I was able to find the Gloucestershire Hospitals Foundation Trust lab ranges - see below. These ranges are far more the sort of numbers we would expect.
Sorry but I can't help you on this query via the forum .
I strongly suggest that the bug is reported back to the surgery in the first instance and then to the NHS. Such a bug can have disastrous consequences for patients.
Until the bug is resolved, I suggest asking the surgery for paper print outs of lab results. they may push back so explain about the bug in the app and you need the actual results.
Thanks for responding. I very much agree about disastrous consequences.
It is all outside my personal experience. As a third-party, my access to reporting is severely limited. I have contacted PALS at the hospital, the CCG's PALS, tried to contact TPP (SystmOne and the Aidmid app) - but got auto responses saying they don't accept emails, and requested forwarding on to pathology.
("Please note that we do not accept any functional queries or development requests via this email address. If you are unsure how to resolve queries of this nature, please refer to the ‘Getting Help with SystmOne’ guide from the help menu within SystmOne."
AND
"We are no longer accepting feedback via email. Unless TPP have explicitly asked you email us, we WILL NOT respond to this email.
We now have a new support centre<airmidcares.co.uk/> for logging all issues with the Airmid App. This provides an FAQs<airmidcares.co.uk/faqs/> page and a Support Forum<airmidcares.co.uk/support/> where you can view questions that other users have previously asked, or log a new issue.")
I did not think it appropriate for me to sign up to their support forum. I'd rather they got kicked by NHS.
Could Thyroid UK carry out a survey of its members to find out if any users are experiencing similar bugs?
On the App store, there is a comments section. Can I suggest that Airmid UK users leave comments there about the bug on which ever download site they use?
I seem to be causing a lot of work for you all, so sorry. I will comment on the app feedback page and see if anything’s said. On a plus note I heard back from doctors this morning who has booked me in for a blood test next Thursday to do a TRab test and have told him I won’t take the tablets till I have the result back from them. Thank you all
I use systmonline and the NHS app as I couldn’t get on with Airmid but have it on my device, I just had a look at mine. The TSH range usually used is (0.35 - 3.50). My last result was 0.31. So just below range but airmid shows as normal. Also the range for TSH on airmid was 0 - 19. So there is definitely something wrong with that.
Within that, they have an option which includes apps!
Incidents involving a medical device including diagnostic tests, software and apps
I encourage anyone who sees this issue (or any other issues of significance) to file a report.
I have now filed a report using the information supplied. However, I expressly identified that I am a third-party and do not actually use the app myself. Therefore it would be entirely reasonable for every individual to report this themselves.
Well I never knew that! I think this is worth a post all of it's own. There are probably many using apps these days for their test results etc. People need to be aware not only that such apps may be flawed, but that it is possible to officially flag them up to the MHRA.
Your recently added photo shows yours FT4 level is already trending downwards. I would be questioning if medication to reduce it quicker is really the right approach. Especially without evidence you have Graves.
It’s not unusual for those with hyperthyroid results to be prescribed carbimazole while waiting for their first endo appointment, but I’ve never previously come across a case of it being prescribed ‘just in case’ for someone whose results were within range from the outset (although you do mention two sets of tests ?)
The dose is low, and many people safely remain on this level of antithyroids on a long term basis without any issues. However, the risk factor for some pretty serious side effects never disappears completely, so make sure you have read and understood the patient information leaflet (available via google if you’ve lost it, just ask if you have any further questions).
Endos typically discourage patients from remaining on long term carbimazole, partly because of the potential side-effects, so it does seem odd they would prescribe it ‘just in case’ for someone whose thyroid results appear to be within range. If they were clearly above range, it would be more understandable, especially if there was already a risk of any cardiac issues.
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From Hypo to Hyper... Too much T3 concern
ONE YEAR ON FROM CARBIMAZOLE
NDT dosing. Nearly there, but is 3 grains too much?
Help endo insists i stay on carbimazole 5mg- does he really know what he is talking about?
