(The TRab result was given to me verbally when receiving the first set of results, as the result is back, but the "write up" wasn't)
I've been prescribed carbimazole by GP; when questioned on "why carbimazole?", I was told that it was the endo's job to work out why I have hyperthyroidism, and the GP was just treating the hyperthyroidism.
As a note: I have neither seen a GP or taken carbimazole -- this means that the numbers have dropped (or fluctuated downwards) of their own accord.
What do people think? I have an appointment to see an endocrinologist privately on September 7th, and was planning on waiting to take the carbimazole until then, given it isn't clear that problem the GP is treating with carbimazole (as the hyperthyroidism is a symptom and not the cause).
Given that I'm negative for both TPO and TRAb, this feels unlikely to be either Graves or Hashimoto's (unless I'm seronegative for both) -- but who knows?
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I think you have Hashi's, regardless of negative antibodies. A certain percentage of Hashi's people never ever have antibodies over-range but they still have Hashi's. The antibodies are not essential to the disease. They are a good guide when they're positive but they don't have to be there.
Your high Frees look typical of levels after an autoimmune attack on the thyroid. And, they will go down by themselves as the hormone is used up or excreted.
Your doctor's explanation is rather illogical, and he wouldn't have given it if he had any understand of blood tests results in someone with Hashi's (I have Hashi's, by the way). Carbi is the wrong treatment of a Hashi's 'hyper' swing (or flare). It stops the thyroid making hormone but it doesn't get rid of the hormone in the blood. So, the patient tends to go very hypo very quickly. Good job you didn't take it!
Well - that's interesting - as neither antibody readings are over the range - though has to be said antibodies can wax and wane.
But with Graves - as a health issue - we would expect T3 and T4 levels to build higher and higher and why Graves is seen as life threatening - and the reason why the AT drug is prescribed is to block/ stop this process :
With Hashimoto's - as a health issue - we would expect T3 and T4 levels to slowly drop back down into the range naturally and why there is no need to prescribe an AT drug.
So - you haven't taken the Carbimazole and have another NHS follow up blood test in a few days time and arranged to see someone privately in September and plan not to take the AT dug until you have this second opinion.
Again, the symptoms of Graves can be quite traumatic and you sound as though your symptoms are minimal - how are your symptoms now ?
You did refrain from serious exercise - blood pressure / pulse and temperature readings ?
What symptoms have appeared, do you sleep well, can you ' turn off ' or feel as though you are constantly on ' high alert ' ?
> With Hashimoto's - as a health issue - we would expect T3 and T4 levels to slowly drop back down into the range naturally and why there is no need to prescribe an AT drug.
This is almost my biggest problem at the moment: if it was Graves (or, at least, not Hashimoto's), then taking the Carbimazole would make sense. However, given it could be Hashimoto's, it feels there's "significant risk" to taking the Carbimazole now, when I could just wait and it will drop anyway (vs. dropping "hard" on Carbimazole and swinging too much into hypo).
> So - you haven't taken the Carbimazole and have another NHS follow up blood test in a few days time and arranged to see someone privately in September and plan not to take the AT dug until you have this second opinion.
Yeah, no Carbimazole to-date, because I am unsure if it is the right thing (the whole GP saying "we're just treating the hyperthyroidism, not investigating the cause" really didn't give me confidence about taking it).
I had an NHS blood test today (first one on the NHS), with the results coming back on Tuesday -- however, I don't have any believe they're going to be any different from the two private tests I've had already (i.e., they're going to show no TSH + elevated T3/T4).
The doctor who reviewed the Medicheck's blood tests was "quite unhappy" I was going to wait until September 7th to the endo, as she believed this was way too far in the future 🙈
When I had blood tests taken today, the GP even told me "no point starting the Carbimazole now, might as well wait until Tuesday" (when the results come back) ...
> Again, the symptoms of Graves can be quite traumatic and you sound as though your symptoms are minimal - how are your symptoms now ?
Honestly, I would say "extremely minimal"; I was having chest pain + palpitations + an elevated HR about 4-6 weeks ago -- however, these have totally subsided now. The only prolonged symptom I have now is "appalling" sleep, but even that has improved after following some CBTI: I was getting about 3-4 hours a night, and now I'm at about 6-7 (with about 1-2 hours awake around 2-4 am).
My resting HR is now back down to 53 (from a high of 68 or so) -- but I have stopped doing rigorous exercise, so it could be that.
> You did refrain from serious exercise - blood pressure / pulse and temperature readings ?
I've stopped all strenuous exercise and I'm now aiming to do a gentle walk (average HR on a walk: 105) for an hour each day.
Temperature is normal and I had my blood pressure taken today: 112/70 (which is marked improvement over the 140/90 that I had about 6 weeks ago).
> What symptoms have appeared, do you sleep well, can you ' turn off ' or feel as though you are constantly on ' high alert ' ?
I can turn off fine (falling asleep is not an issue); my sleep is just very disturbed -- I wear an EEG at night (a Dreem) so I can accurate track what's going on. I'm averaging about 15 "awakenings" a night for 1 to 2 hours "awake" a night.
I started taking melatonin and Kalms (along with the CBTI), which really helped me improve the sleep from 3-4 hours up to 6-7 hours.
When I do wake up, I'm not on "high alert" and I do a good of not going "stressed" about being awake, but my body is just "awake" without much tiredness, so it takes a long time to nod back off (and, when I do, I yo-yo between awake and sleep in 5 minutes increments).
Well, if Graves, your symptoms are minimal at the moment and understand your reservations in taking the AT drug - let's hope your symptoms do not change and the box of Carbimazole can stay unopened.
Thyroid UK- the charity who support this forum do hold a list of patient to patient recommended thyroid specialists and endocrinologists NHS and private - might be of help to you - though I know you have already committed to someone.
> Well, if Graves, your symptoms are minimal at the moment and understand your reservations in taking the AT drug - let's hope your symptoms do not change and the box of Carbimazole can stay unopened.
I guess that's a good way of looking at it: if it wasn't for my poor sleep and the blood test results, I don't think I could tell you anything is wrong with me (well, maybe if I was exercising heavily I would) -- this is what makes me so hesitant with the Carbimazole, because it feels a bit like dropping a bomb to kill an ant (at least until we understand what's causing these symptoms).
> Thyroid UK- the charity who support this forum do hold a list of patient to patient recommended thyroid specialists and endocrinologists NHS and private - might be of help to you - though I know you have already committed to someone.
Is this list the "Private GPs and Practitioners List" and "Endocrinologist List"? If so, I have those lists, and the endo I'm seeing privately is on the "Endocrinologist List" (with "Has prescribed T3", but I guess I have enough of that already 🤣).
Oh, and I was also checked over by a nurse from an endocrinology department while at the GP today. The nurse checked my eyes, "shakiness", as well as doing a thorough physical examination of my neck/thyroid.
From the outside, she could find no signs of nodules, or that I was experiencing eye issues that would align with Graves.
Before the appointment, I'd read online that one of the symptoms of Graves is a shaking/tremor of the hands.
The GP didn't say this beforehand, but one of the checks she made me do was hold out my hands extended in front of me while she checked them; this was to check if they were shaking or not (I passed the test, either way!).
Sorry - yes - I misread and first off thought the shakiness related to your eyes !!!
Hence the question but then the ' penny ' dropped and I edited my reply - yes, my only new symptoms at diagnosis was insomnia and when I held out my hands there was a tremor on the middle finger.
Just a very very long shot - are you taking anything containing biotin as this can skew with the assay used in the Labs and distort blood test readings ?
> Just a very very long shot - are you taking anything containing biotin as this can skew with the assay used in the Labs and distort blood test readings ?
Wishful thinking ... unfortunately I'm not taking any supplements at all (well, apart from Kalms, which is just valerian root, and melatonin).
Well I was diagnosed Graves Disease 18th April and prescribed Carbimazole and although blood tests show a little difference my levels still fluctuating. I never felt so ill. Chronic fatigue body pain insomnia sickness and no appetite. It's affecting my mind also so I don't think this drug is working. More blood tests this month and in September then consultation so not sure of my levels or if meds will change or the dose even
If you levels are unable to be controlled / stabilised on the At drug alone there is another treatment option called Block and Replace whereby your AT drug is increased to fully block your own thyroid hormone production and a dose of T4 thyroid hormone replacement is introduce to replace a measured dose of thyroid hormone so to relieve the equally debilitating symptoms of hypothyroidism.
Are your eyes sore, dry, watery, light sensitive - just ensure any lotions, potions and preparations you use are all Preservative Free - even those prescribed by the NHS.
Do also get your core strength vitamins and mineral run as these tend to nose dive through the ranges when metabolism runs too fast or in fact too slow - and non optimal ferritin, folate, b12 and vitamin D can compromise your health issues even further.
My experience, is that the carbimazole will bring your TSH , T3 and T4 back into the ranges although it may take up to 3 months. I was started on 10mg as like you my figures weren’t too far out. After being in range for approx 12 months the endo reduced me to 5mg and after 18 months I was advised to stop and see if my thyroid would function on its own. This is where I currently am and will see the endo again in the Autumn or before if I relapse. The endo hasn’t offered much advice about my Graves , again my readings were just outside the ranges, so I can’t offer any advice on this.
Maybe ask for your strength vitamins and minerals to be run as when metabolism isn't running quite right, ferritin, folate, B12 and vitamin D can nose dive through the ranges compounding your health issues further.
> The TRab range looks high. That might be the range, as ranges do vary but the fact your result matches the limit makes me wonder if this is incorrect.
Yeah, it was a bit weird that the results were both `<`. I've attached a screenshot of the report from Vitality; the Medichecks one hasn't yet come back, I was only given it verbally.
Writing "TRAb: <2.9 iu/L (range: <2.90iu/L)" for the second set of a results was a "generalisation" by me, and not actually what the report says.
It will be interesting to see how the results from Medichecks actually look.
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I only look at the TSH:
Help in understanding results.
Do my thyroid results from Thursday look ok?
