More to the point - how are you feeling and what symptoms are you dealing with ?
We need to see the ranges for these numbers - but going on most ranges - you look to be above most ranges.
In order to know ' what condition ' you are dealing with we need readings / ranges for thyroid antibodies - generally written as either a TPO; TgAB : TRab: and or a TSI - which then tells us - your diagnosis.
If the diagnosis is Graves Disease an Anti Thyroid drug such as Carbimazole is prescribed - do you have this medical evidence there ?
If the diagnosis is Hashimoto's which starts off the same way as Graves - an AT drug is not prescribed as the T3 and T4 fall back down into range by themselves.
The AT drug simply semi-blocks your new daily thyroid production while we wait for your immune system response to calm down and your T3 and T4 fall back down into range and hopefully your symptoms alleviated.
As your T3 and T4 fall back down the AT drug is titrated down otherwise you risk your T3 and T4 falling too far through the ranges and you suffering with the equally disabling symptoms of hypothyroidism.
When metabolism is not running exactly right for the individual - either too fast as in hyper/overactive thyroid or too slow as in hypo/underactive thyroid your core strength vitamins and minerals can nosedive through their ranges, compounding your health issues even further - so suggest you get a ferritin, folate, B12 and vitamin D run and we can advise at to where these need to be maintained to help support you through whatever it is that is going on.
> how are you feeling and what symptoms are you dealing with
Since about March, I've noticed an increase in resting heart rate (up from 53 to 68, between March to June) and an active heart rate increase from around a 160 max to 190 max while running. Very active (2x20k runs, 2x40k rides, 2x4k swims per week), so tracking these numbers was something I was also used to do, so could spot the pattern.
I started to tone down the exercise to "give my heart a break" and then in June I started having strong heart palpitations (even after doing less exercise) and my HR would randomly spike to about 120 bpm while napping.
Sleeping has also been an issue since about March too, with me complaining a lot that "I just can't get cool enough to sleep".
I had a few check-ups with different consultants to resolve the increase in HR and only had blood taken on Weds (privately, nurse visited my house) -- the results came back with the numbers I shared above, and then I was told to go to A&E. A&E checked me out for a thyroid storm and then "kicked me back" to my GP. I got a call the same day from a nurse practitioner, who prescribed 10mg once a day of carbimazole.
I believe that the nurse practitioner (and the A&E staff) have based this exclusively on the numbers I gave in my original post -- I don't believe anyone inside my local NHS has seen the actual results of the blood test, only what I shared with them (and then shared with you).
> In order to know ' what condition ' you are dealing with we need readings / ranges for thyroid antibodies - generally written as either a TPO; TgAB : TRab: and or a TSI - which then tells us - your diagnosis.
The only numbers I have (and I believe my local NHS have) are the three numbers shared above. These came from "routine blood work" done by my health insurance. My local NHS haven't taken blood, and given the "lack of information" they seemed to have, it doesn't seem they have the actual results from my private medical insurance.
All of this has been based off of the three numbers that I had, which I received in a text message (!!!).
> If the diagnosis is Graves Disease an Anti Thyroid drug such as Carbimazole is prescribed - do you have this medical evidence there ?
> If the diagnosis is Hashimoto's which starts off the same way as Graves - an AT drug is not prescribed as the T3 and T4 fall back down into range by themselves.
Neither the nurse practitioner (or A&E have given me any kind of diagnosis), only "your numbers are high, you have an overactive thyroid, take Carbimazole one a day".
> so suggest you get a ferritin, folate, B12 and vitamin D run
Sound like a trip to Holland & Barrett is in order
Well to prescribe a drug such as Carbimazole, there needs to be the medical evidence and a diagnosis and to get a diagnosis you need to have had the thyroid antibodies run :
A thyroid storm is life threatening -
Graves is said to be life threatening if not medicated -
I would check these results with whoever ran them and get the ranges :
The NHS are not obliged to accept private blood test results and generally if nothing else it forces them to run their own bloods and on which your medication is based.
So you sound to have had a very physical life style - and suggest you now rest up and focus on getting the appropriate treatment.
When is your next appointment to check your T3 and T4 and will this be at the hospital which is where this treatment option is usually monitored?
Are your eyes involved - dry, gritty, watering, light sensitive ?
Thyroid UK - thyroiduk.org is the charity who support this forum where you can around all things thyroid.
For Graves you can do no better than read around Elaine Moore's website and books - elaine-moore.com
and for Hashimoto's the research of Dr Izabella Wentz comes well recommended - thyroidpharmacist.com
No reason -- but going to Holland and Barrett means I get something today rather than a waiting a few days for something to get delivered.
> Well to prescribe a drug such as Carbimazole, there needs to be the medical evidence and a diagnosis and to get a diagnosis you need to have had the thyroid antibodies run
Hmm, so, it is possible that prescribing Carbimazole might be the wrong thing? If it is actually Hashimoto's, might taking the Carbimazole now make things worse?
> The NHS are not obliged to accept private blood test results and generally if nothing else it forces them to run their own bloods and on which your medication is based.
This was actually what I was hoping would happen; the private results would make the NHS go "we should check these", and then work out what to do (vs. just giving me a prescription without any further checks).
> When is your next appointment to check your T3 and T4 and will this be at the hospital which is where this treatment option is usually monitored?
I have an appointment at the GP to re-run bloods on August 14th; this is going to be at the GP surgery (so not a hospital) -- this was scheduled for 4 weeks after starting the Carbimazole.
> Are your eyes involved - dry, gritty, watering, light sensitive ?
Nope, zero eyes issues at all (apart from when your eyes feel a bit tired when I have a notably bad night's sleep) -- none of what you listed though.
You have no need to get anything today or tomorrow :
First you need to run the relevant blood tests - then post the results and ranges back here, in a new post/question, and you will be advised what, if anything, needs supplementing.
I think try and speak with your doctor regarding an antibody blood test - and ask exactly what have you have been diagnosed with, and which antibodies have been found positive and over range - if it hasn't been done - s/he can sort it for you.
Ok good, just in case you get any issues with your eyes get just ensure you only use Preservative Free preparations, even those prescribed by the NHS.
Looks like I can get it done local to me; I'll try to call them on Monday to see if I can arrange one visit (and pay once!) to get the blood drawn, rather than having to do it twice.
Yes - you highlighted Medichecks - Thyroid Advanced blood test and the Graves Antibody Blood test above and I replied saying these 2 covered all you needed.
You need to order the 2 Medicheck blood tests you highlighted yesterday through Medichecks and read Medichecks instructions as to how to proceed :
We suggest you arrange an appointment - Monday/Tuesday so your sample is at the Laboratory and actioned, with you having the results back before the weekend.
I think the Graves antibody test takes a little longer to process :
Is there anything I need to be aware of try to make the tests be "as successful"/accurate as possible?
For example, I've seen some posts about "before 09:00", "only have water before the test" and "stop supplements a week before the test", but I am not sure if there's anything else I've missed.
OK - so as far as I'm aware you are just taking the AT drug - Carbimazole ?
So follow the same arrangements as instructed to do now when taking a blood test for the hospital/doctor.
Taking an early morning blood test is suggested for people who are hypothyroid as many doctors dose on just a TSH and an early morning appointment should offer a high TSH reading which may allow them a dose increase as historical we hypo patients seem to be left undermedicated rather than optimally medicated.
Stop the week before the blood test any supplements that you are testing so we measure what your body is holding onto rather than what you have just ingested and stop anything containing biotin as this can interfere with the measuring assays used at the Laboratory.
I think that's all - and just read through Medichecks suggestions as well in case I've forgotten something.
As Pennyannie says, you need confirmation from all those antibody tests before a diagnosis can be made and Carbimazole started. You may or may not be on the correct medication.
No, I'm not surprised. Many doctors automatically think high FT4/FT3 = Graves disease and prescribe Carbimazole, we see it quite often on the forum. However, when we've encouraged members to check that all antibodies have been tested, or ask for them, it's often the case that it's negative for Graves and turns out to be Hashi's.
Hashi's is where the immune system attacks and gradually destroys the thyroid. When the attack happens, the dying cells release a lot of thyroid hormone into the blood and this can cause TSH to become suppressed and Free T4 and Free T3 to be very high or over range. This can be the first stage of Hashi's and is often mistaken for over active thyroid, so you can see why it's important to have confirmation by testing all the antibodies. Your GP can only test TPO, the others would be done in secondary care, but raised TPO antibodies are often the first clue to Hashi's (but can also be raised in Graves I believe).
By the way, forget Holland and Barrett, you will get much better quality supplements online, ask on the forum for suggestions but please test first and post results/ranges on the forum for guidance.
You should have them on the NHS. You shouldn't accept the diagnosis of overactive thyroid and prescription for Carbimazole without confirmation of positive TRAb or TSI test.
As Pennyannie mentioned in her reply there are 4 types of antibodies.
The first two are often suggestive of Hashimoto's. Only TPO can be done at GP level. Tg antibodies can be done at secondary level so an endo would request them. You can have negative TPO antibodies but positive Tg antibodies with Hashi's:
TPO - Thyroid Peroxidase
TgAB - Thyroglobulin
These next two would need to be done at secondary level and Graves disease can only be diagnosed by a positive result for either of these:
> You should have them on the NHS. You shouldn't accept the diagnosis of overactive thyroid and prescription for Carbimazole without confirmation of positive TRAb or TSI test.
Need to be careful here then, but do you think it might be wise to stop taking the Carbimazole until I have an actual positive diagnosis?
> Medichecks do the TRAb test but it's expensive
Do you know if there's a test that does "all four" at once, or would I need to get separate tests?
I found this one: bluehorizonbloodtests.co.uk... -- would this be a "one stop shop" to find out everything I need?
No, it only does TPO and Tg antibodies. You really need TRAb and/or TSI as well.
Do you know if there's a test that does "all four" at once, or would I need to get separate tests?
I don't think any of the private labs do all of the antibody tests, the only one I know of is the Medichecks separate TRAb test.
Need to be careful here then, but do you think it might be wise to stop taking the Carbimazole until I have an actual positive diagnosis?
I cannot advise on that, I am not medically trained, it has to be your decision. However, you have had everything explained in all replies here how Hashi's is often misdiagnosed as overactive thyroid and Pennyannie commented
Well to prescribe a drug such as Carbimazole, there needs to be the medical evidence and a diagnosis and to get a diagnosis you need to have had the thyroid antibodies run :
Do you have this evidence and confirmation of the correct diagnosis.
Also
I think try and speak with your doctor regarding an antibody blood test - and ask exactly what have you have been diagnosed with, and which antibodies have been found positive and over range - if it hasn't been done - s/he can sort it for you.
.
I'm looking at getting both of medichecks.com/products/adv... and medichecks.com/products/tsh... -- but would this be a good place to start?
The Advanced Thyroid Function test can be done by fingerprick but sometimes there are a couple of tests that fail so Medichecks recommend venous blood draw. The antibody test must be done by venous blood draw.
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