It needs to be a private blood draw. Can’t be via DIY finger prick test
The test you did with Thriva has tested TPO and TG antibodies…..these are often very high with autoimmune HYPOTHYROID disease (hashimoto’s) ……can also be slightly raised with Graves’ disease
Both TPO and TG thyroid antibodies are well within range - ie “normal”
I don't take anything currently for Vit D and Folate wasn't tested. Do the antibodies test mean that i don't have Hashimotos? ( there was an initial thought that may overactive diagnosis may have been a flare up before Hashi)
What i did notice is the optimal Ferritin range was lower than the normal range, is that correct? I thought it would go low, normal, optimal not low, optimal, normal.
Nodules that produce excess thyroid hormone — called hot nodules — show up on the scan because they take up more of the isotope than normal thyroid tissue does. Hot nodules are almost always noncancerous.
Im in Somerset, have booked the Trab test via medichecks so lets see what that says. I noticed my FT4 went up by a significant amount in the space of a couple of weeks. I can't make head nor tail of it all....all the results say normal yet they appear to be fluctuating weekly🤦♂️
Do the antibodies test mean that i don't have Hashimotos?
Not conclusively, no. Antibodies fluctuate all the time, so just because they were low the day of the test, doesn't mean they always are. Is this the first antibody test you've ever had?
Also, some Hashi's people never even have over-range Antibodies. They are diagnosed by ultrasound when the damage to the gland becomes visible. So, despite the low results, you could still have Hashi's.
TPOAb: 7.4 klu (Range 0-200) 0-34 classed as normal
That range is weird. I have never seen a TPOab range go that high. And, if 0.34 is classed as 'normal', what is 35-199 classed as? And how about more than 200? Doesn't make sense. Are you sure that's right?
if someone has a ultrasound to check for hashi’s , what is the benefit of having the ultrasound and what do you do with the results, is the treatment any different or just thyroid meds
The benefit is in knowing that your levels are going to swing around from time to time. The treatment, basically, is exactly the same, because there is no treatment, as such, for the Hashi's itself. All one can do is replace the missing hormones as the thyroid slowly dies.
Do you know how Hashi's 'works'? It's an autoimmune disease where the immune system periodically attacks the thyroid and slowly destroys is.
During the attacks, the dying cells deposit their stock of thyroid hormone into the blood, causing the FT4 and FT3 levels to rise sharply, and the TSH to fall.
When this happens, doctors - who, in general, have no idea how Hashi's 'works' - will tell you you've 'gone hyper' and slash your dose of levo. They've even been known to stop treatment altogether because they have no idea that the sudden rise to 'hyper' levels is only temporary, and the patient will inevitably become hypo again, with time. This is why they rarely test for antibodies, because they don't know what they signify.
However, if you know all this, know that you have Hashi's and what is likely to happen, if you feel that you have suddenly 'gone hyper', you can reduce - or stop - your levo by yourself, without involving your doctor with all the complications that that brings. After all, at least one of you should know something about your disease. And if it isn't the doctor, it has to be you! 🤣
thanks for a great reply, I didnt know any of that info, very helpful, could I ask you how often can the attacks occur and for how long does it occur, presumably you are aware of a attack if pulse etc increases? . or
How long is a piece of string? There are no set timings, it happens when it happens. I'm afraid there are just no answers for those questions, and it's probably different for everyone.
PurpleNails knows more about diagnosis and symptoms
Folate is low
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.
This can help keep all B vitamins in balance and will help maintain B12 levels between injections too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I havn't had an ultrasound and Endo has said if my next set of bloods are "normal" he will stop the Carbimazole. I will ask for an ultrasound at my next appointment. I have invested in some D3 supplements and will get some B complex as well to see if they help shift the fog.
The endo may well run his own test as private medical results are not readily accepted by the NHS. though with the ' rider ' that he will stop the Carbimazole at the next appointment if your T3 and T4 are in range, suggests that he thinks you are not with Graves Disease.
It seems absolutely ridiculous to me that your TRab wasn't processed from the initial blood sample that was suggestive of an auto immune thyroid disease and this should have been actioned before any medication is prescribed.
I am awaiting the Medichecks one but unbeknown to me the Endo had taken 1 (after 4 sets of bloods) and the result came through in the post Wednesday. Am i right in thinking that if stop the Carb completely my TSH will come down and FT 3 & 4 go up?
Yes, once the AT drug is out of your system your TSH, T3 and T4 should revert to where they were before this ' hiccup ' - but we do need to know ' why did this hiccup happen ' - and if it is likely to happen again ?
Were your Hashimoto's antibodies TPO / TgAB negative ?
Was there a suggestion of a thyroid scan - I can't recall ??
Both TPO and TgAB were normal on my Thriva test. Endo initially said he would scan if antibodies were found.
I had a sore throat to touch around the thyroid gland and it hurt to swallow intermittently in the same place that it hurt to touch (will attach picture) then i had a Covid like illness (didn't test positive), then symptoms of Hyper.
I had a thyroid scan because I had no autoimmune & therefore it was necessary to confirm the source of hyper levels - with doctors suspecting it was a hot nodule.
If the cause was known as autoimmune it’s rarely considered necessary.
Usually scans are only done if there’s a physical concern with the growth / swelling of thyroid & suspicioun that it is compressing surrounding structures ie impacting on voice, breathing or swallowing.
Nodules can easily go totally unnoticed, especially if small or located deeper in thyroid.
2 doctors had said my neck was “fine”. Then at a third appointment - I took a bottle of water & asked nurse to look at neck when drinking.
Put your head up & gulp water, sometimes this reveals thyroid swellings.
It was quite obvious there was an issue with a noticeable enlargement to left side. It wasn’t noticeable unless looking for it.
She arranged bloods & ultrasound. The nodule was measured at >5cm. (So you can see what im saying about small nodules being missed)
the team did a FNA at 1st appointment- which was clear.
It was some time before it was noticed the function tests I’d had hadn’t been processed - other blood test results were ok but thyroid function was missing. When these showed hyper I was stated in 20mg carbimazole by two months FT4 & FT3 was low but TSH has always stayed undetectable.
This is when I had a radioactive iodine uptake scan. This show which areas of the thyroid function & confirmed uptake was confined to nodule. When diagnosed my FT3 was higher % then FT4. This is said not to be unusual with nodules, which also suggest it’s possible for FT4 to be high too.
Symptoms can be very individual I hadn’t noticed many of mine at the time. I thought I might have hypothyroid, I had no energy, my nails were de attaching. but I was over weight and had a uncontrollable appetite. As I’d had elevated levels for many years this had developed gradually.
I didn’t lose weight until levels mid way & then I felt well enough to mange diet well. Your hyper symptoms sound like they started quite suddenly? I don’t think that should rule out possibility of nodule either.
The Endo doesn't seem to bothered about the cause, he just seems ok that levels are in range! Is it something i can insist on? Based on your experience it seems quite important, well it does from my point of view.
You can be insistent but ultimately the doctor has control over what investigations & treatments are appropriate. Doctors do have a duty to work with you & can’t for example force a treatment on you.
So you may need to argue your case. To you it’s preferable knowing the cause because if it’s either of the 2 autoimmune conditions the hyper could either “take off” again and you could become hyper or the opposite could happen and you become hypo.
Your doctor may argue either out come can be treated as & when it occurs, but having an idea in advance is helpful & might prevent the worst extremes.
With Graves doctors recommend a 18 month trial of anti thyroid medication in anticipation the hyper resolves, then consider permanent treatments (surgery / radioactive iodine) are considered should the hyper remain or relapse.
If it were a nodule the hyper production is permanent - without the potential of remission / relapse so permanent treatment need to be considered earlier.I was offered RAI early after diagnosis of nodule, knowing Carbimazole would be life long otherwise. (I chose to stay on carbimazole)
My concern with it is that i am self employed and i've had to take a considerable amount of time off so whilst i understand the doctors ultimately have the final say so it's important for me to understand exactly what i'm dealing with. The fact he wants to stop the Carb after a relatively short time makes me think that my "episode" has been short ( compared to most) and sharp and there must be a reason for it. Or is it feasible it flared up due to the covid like illness and has now responded to the treatment and job done. Is it that simple?
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
I will request an ultrasound at my next Endo appointment. I have received the Thorne B complex vitamins and D3, just waiting on my specialist to confirm they are ok to take with the Phenytoin. Do you know anything about Magnesium supplements?
"Your thyroid stimulating hormone receptor antibodies are low. This is reassuring as typically high levels are associated with autoimmune thyrotoxicosis (Grave's disease and hashitoxicosis).
Glad they say it’s reassuring - A little non committal as saying low = not Graves. Would be interesting to know if in range high or is over limit classed as high?
Negative for antibodies, means doctors should scan thyroid. Ultrasound will detect them but to confirm function they may consider a uptake scan. This does show function, throughout thyroid.
Doctors may order an “thyroid uptake scan” or “nuclear scan” to confirm strong suspicion of hyper functioning nodule.
Hospitals can complete the scan differently - either a small injection into vein. Some hospital give a drink. The substance is radioactive iodine so is taken up by thyroid.
An injection is quicker and scan 30 mins later, if a drink the wait might be 3 hours, or return the subsequent day.
The radiation level in very low but you usually have to minimise close contact for 24 hours afterwards.
Endo has now told me stop the Carb completely and re test in Jan. From my bloods my TSH is lowering, T4 is increasing and T3 is levelling. What can i ascertain from that? He has requested a scan but not based on the thyroid but more because my Lymph nodes are swollen.
“ From my bloods my TSH is lowering, T4 is increasing and T3 is levelling - What can i ascertain from that?”
Now you stopped Carbimazole it allows new hormone to be produced. The FT4 should rise.
Most FT3 is converted from T4 although some is produced by thyroid.
The TSH mechanism should work to both preserve FT3 from going too low & stop FT3 going to high, but you previously you had disproportionately high FT3 so that’s something to keep an eye on.
So increasing T4 & levelling T3 is what should occur.
I think a scan is necessary - If all you antibodies are negative your doctors should have curiosity about the source of the hyper, in order to explain if & prevent it.
Thriva have a very confusing way of reporting their results.
Please ignore their "optimal" levels, and in most cases their "normal" range, they are generally nonsense as you can see by this:
FT 4: 14.7 pmol (Range 0-22) this was classed as optimal
That FT4 range is actually 12-22 (the green bit on the coloured bar graph) and your result is just 27% through the range, which is low. Optimal would be, for most people, in the upper half of the range, possibly around 19+ (70% +).
So on the bar graph just look at the green part (light and dark green), anything else is out of range.
You can find your results with their normal ranges as a pdf by using the "view printable results" button on your dashboard.
Forget the range with Vit D. Vit D has categories - deficient, insufficient, adequate. Each category has a range. Generally deficient is 50. But even "adequate" is a lot lower than the level suggested by the Vit D Council, Vit D Society and Grassroots Health who all recommend a level of 100-150nmol/L with a recent blog post on Grassroots Health recommending at least 125nmol/L.
You might want to check out a recent post that I wrote about Vit D and supplementing:
The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).
So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day. The nearest you can get is 4,000iu.
Retest after 3 months.
Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:
Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.
D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc. 90-100mcg K2-MK7 is enough for up to 10,000iu D3.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.
For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.
For Vit K2-MK7 my suggestions are Vitabay, Vegavero or Vitamaze brands which all contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.
Vitabay and Vegavero are either tablets or capsules.
Vitabay does do an oil based liquid.
Vitamaze is an oil based liquid.
With the oil based liquids the are xx amount of K2-MK7 per drop so you just take the appropriate amount of drops.
They are all imported German brands, you can find them on Amazon although they do go out of stock from time to time. I get what I can when I need to restock. If the tablet or capsule form is only in 200mcg dose at the time I take those on alternate days.
If looking for a combined D3/K2 supplement, this one has 3,000iu D3 and 50mcg K2-MK7. The K2-MK7 is the All-Trans form
Magnesium should be taken 4 hours away from thyroid meds and as it tends to be calming it's best taken in the evening. Vit D should also be taken 4 hours away from thyroid meds. Vit K2-MK7 should be taken 2 hours away from thyroid meds. Don't take D3 and K2 at the same time unless both are oil based supplements, they both are fat soluble vitamins which require their own fat to be absorbed otherwise they will compete for the fat.
Don't start all supplements at once. Start with one, give it a week or two and if no adverse reaction then add the next one. Again, wait a week or two and if no adverse reaction add the next one. Continue like this. If you do have any adverse reaction then you will know what caused it.
Ferritin: 264 ug (Range 30-400) optimal range (30-200)
What i did notice is the optimal Ferritin range was lower than the normal range, is that correct? I thought it would go low, normal, optimal not low, optimal, normal.
The range is 30-400, ignore the "optimal" range.
Ferritin is recommended to be half way through range which would be 215 with that range, so yours is a bit over half way.
Active B12: 151 pmol (Range 37.5-150)
That's a good Active B12 result.
Do you take any iron supplements, or B12 or B Complex?
Thank you for such in depth information, i will try and find the printable results (can't find it on the app, will go desktop site). I will have a good read of all the links you sent me tomorrow.
As for the B12, i have a quarterly injection and it had been administered a week prior to the Thriva test so that explains the high score.
As you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) as may be beneficial.
This can help keep all B vitamins in balance and will help improve B12 levels between injections too
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
Have had a B12 injection for over 10 years now, and i really notice the difference towards the end of the quarter. As far as im aware it is just low B12, initially i had to have 5 injections in 5 days to get it up to level and then the quarterly 1 ever since. Im not vegetarian or vegan. I have sent off for a folate test from Medichecks to see how that is but a recent intolerance test (which also tested vitamins) said i was low on it so maybe the Medichecks 1 will confirm it. Will look into Vit D and B supplements.
It is also wise to take a good vitamin B complex in addition to your B12 injection as all B vitamins need each other to work properly. Supplementing one in isolation can cause an imbalance in others. If you can increase your intake of B6 from food then there is no risk of toxicity, however some people have experienced side effects such as neuropathy from daily very high dose vitamin B6 when taken for long periods. Please note, the folate contained in B complexes and multivitamins is commonly folic acid and this may not be the best form for you. Please see point 10 above.
The GP seemed to think it was because i take Phenytoin (an anti-convulsant) because its an enzyme inducer. There are links between low B12 and Folate and taking Phenytoin, but things would make alot of sense if it were thyroid issues all along.
Results showed a significant decreases in thyroxine (T4) and free T4 (fT4) among patients taking antiepileptic drugs, specifically carbamazepine (CBZ), phenytoin (PHT), and valproic acid (VPA), while thyroid-stimulating hormone (TSH) was increased compared with control groups; triiodothyronine (T3) and free T3 levels were unchanged.
Thank you for that, its a very interesting read, i was put on Phenytoin 30 years ago, way before i started the B12 injection, never had any folate supplements though, i think i will invest......
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