Good afternoon, I dropped my recent Blue Horizon test results of to my Doctor this morning. The surgery just rang to say that they are different to their NHS guidelines and she therefore wants me to have another test done by the local NHS phlebotomists.
Has anyone ever came across this problem ?
Thank you.
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TJc64
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Yes, it happens quite often. They don't have to accept private test results, but if it's prompted them to do their own tests then that's a good thing.
I don't understand what the mean by "that they are different to their NHS guidelines", it's a test with a result and a reference range not a guideline for anything. If they mean the reference range is different, so what? It's where you are within a range, any range, whichever lab does the test, that counts. So if your GP compares your results, make sure that any result is only used with the range from the lab that did the test. So Blue Horizon result with Blue Horizon range, and NHS result with NHS range. It's easy enough to work out the percentage through range.
What tests are being repeated with your GP? Don't forget to book the first appointment of the morning, fast overnight (water allowed), leave off Levo for 24 hours and T3 or NDT for 12 hours, don't take a B Complex or Biotin for 3-5 days before the test. If iron is being tested then no iron supplement or eating liver etc for one week before the test.
Thank you for the response I posted my results yesterday on here . The doctor said the guidelines were different to the NHS so she is unable to read them . She wants to test again as my ferratin levels were high . She is quite a young doctor so may be inexperienced in thyroid. One of your colleagues said I need to increase my dose but I have a TSH level of 0.01 which would indicate over medication? According to the Verywell link regarding over medication. Hope this makes sense . Thank you
Total T4: 63 (66-181) - is that 63, I can't quite make it out on your other thread
FT4: 15.6 (12-22)
FT3: 5.39 (3.1-6.8)
I've just had a quick look through your last thread and it all seems to have been said there.
These results show that you take T3. Taking T3 can suppress TSH and it can also lower FT4.
Your Total T4, if it is 63, is very low, one would expect to see that in range if you are taking Levo as well as T3.
FT4 is 36% through range.
FT3 is 61% through range.
FT4 and FT3 are where one might expect them to be when on T3 plus Levo. Some people need both higher in range. I take both T3 and Levo and I need both FT4 and FT3 around 75% through range.
A suppressed TSH doesn't mean you are overmedicated. Over range FT4 and in particular FT3 show overmedication. TSH is not a thyroid hormone, only FT4 and FT3 are thyroid hormones.
TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.
I still don't understand what your GP means by the guidelines are different. There are only results from Blue Horizon, not guidelines. Blue Horizon doesn't set or quote any guidelines, they only give results of testing.
Yes it is 63 Total T4 can you tell me what this means ? I am sorry am I not quite clear on this . The Doctor said the results were not within the NHS guidelines and wants me to re test . X
Total T4 is the total amount of thyroxine (T4) which includes bound and unbound (free) T4.
The normal range for total thyroxine (total T4) is 66-181. Your results shows that you are below range. When taking Levo only, when optimally medicated one would expect a good level of Total T4 and it should also show a good level of Free T4.
When one is on T3 only and no Levo, one might expect to see Total T4 very low, even under range, as you're taking T3 only, not taking any T4 (Levo).
When one is on a combination of Levo and T3, one would expect to see Total T4 in range, unless the amount of Levo dose was very low perhaps.
The Doctor said the results were not within the NHS guidelines
Perhaps you can ask your doctor what s/he means by "guidelines", emphasising that Blue Horizon doesn't set any guidelines, they only test and give the results and ranges.
Thank you for the explanation. I have sent my results to my Endocrinologist and hopefully he will respond . He accepted the Blue Horizon results last year . Am right in thinking that a low T4 of 63 is below the BH guidelines and therefore undermedicated ? I agree with Greygoose she probably does not know enough about it . That’s why I always ask here first as you ladies know so much more than the doctors and sometimes the Endocrinologist . Though my Endocrinologist is very good .
Am right in thinking that a low T4 of 63 is below the BH guidelines and therefore undermedicated
Blue Horizon don't give any guidelines. They give reference ranges for the tests, same as NHS tests. They are not guidelines.
Your Total T4 is below the reference range.
I honestly don't know if you are undermedicated.
I am not clear exactly what you are taking with regard to Levo and T3 and exactly when your last doses were before you had the blood draw for your BH test.
I am taking 50mg Thyroxine at night. The test was taken as per your guidelines. On an empty stomach. No Thyroxine within 24 hours . No T3 for 3 days prior to test .
How much T3 do you take? I assume you normally take it every day. Why did you leave it off for 3 days?
Considering that you left off T3 for 3 days, you have a false low FT3, and it's at a remarkably good level for someone who hadn't taken their T3 for 3 days. So your FT3 result is meaningless and if you want a true result you should go back to regularly taking T3 and retest to get your normal circulating level.
It's not possible to say if you are undermedicated. It's the FT4 and FT3 results that tell us that. Your FT3 result isn't accurate because of how long you left off your T3 for but you don't seem to be undermedicated with T3, and only you know where you need your FT4, as I said that's different for everyone and I need mine 75% through range, someone else would be fine with your level when on Levo/T3 combination.
Yes . I have sent him my results and am awaiting his response as I think he is away . He prescribed me a trial of T3 a year ago . I then purchased some from abroad as the cost was nearly £400 for a months supply . I did not find it helped much and tbh I have only taken it intermittently. I thought it only stayed in the system a few hours ? I am suffering from anxiety and low mood , dizziness and joint and muscle pain . I had an Adrenal Test a year ago which showed I was producing virtually no Cortisol. I have ordered another test from Regenerus . As I suspect Adrenal fatigue . I also have unexplained high ferratin levels which are higher than a year ago . I do not take iron pills. The doctor wants to retest for this also. Thank you
I then purchased some from abroad as the cost was nearly £400 for a months supply
Good grief! I haven't paid that for a year's supply! Was that with a prescription?
I did not find it helped much and tbh I have only taken it intermittently
Did you give it enough time? Did you reach a dose which made some difference? Taking it intermittently wont help, it has to be regular, every day.
I thought it only stayed in the system a few hours ?
It peaks in the blood 2-6 hours after taking it, but it has a half life of 1 day, so whatever is in your system today then there is 50% of that tomorrow, then the next day there would be 25%, then the next 12.5% etc, so it would take about a week or so to be completely out of your system.
dizziness and joint and muscle pain
These could be low nutrient levels, dizziness B12, joint and muscle pain Vit D. Have you tested these?
I had an Adrenal Test a year ago which showed I was producing virtually no Cortisol.
My B12 was high 580 and Vit D 84 so on the low side but I do supplement with the spray .
The Adrenal Test was done a year ago . I think I told the Endocrinologist but I don’t think he thought it important. I honestly can’t remember now. I just looked at the test and it said it was consistent with phase 2 Adrenal dysfunction possibly due to thyroid or iodine deficiency l I have never supplemented with that . As I thought it was not advised to do that( iodine ) . The Cortisol level was almost non existent. I have ordered another test . I have terrible morning anxiety the adrenaline starts as soon as I wake .
That's not high. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:
"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".
"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
I do my adrenal tests with Regenerus and mine also mentions Phase 2 adrenal dysfunction:
Diurnal cortisol pattern is consistent with evolving (Phase 2) HPA axis
(adrenal gland) dysfunction.
They've never mentioned iodine or thyroid deficiency, but of course they know what you take medication wise as you have to list what you take so they would see I take thyroid meds.
No, we don't supplement iodine unless tested and found to be deficient.
I've just looked at your other thread. Your B12 units of measurement are pmol/L and the quote from the book is pg/ml (units are important).
So 580pmol/L is the same as 785pg/ml, so still not high when you see the quote suggests "For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."
Nothing to worry about with your B12.
My low cortisol was caused by taking adaptogens for high cortisol for too long without retesting, so I am now trying to raise it again using adrenal glandulars.
Thank you so much for helping me SeasideSusie. I appreciate you taking the time to answer my questions. I will receive my test tomorrow so will do it Friday . I think from researching previous posts on here and looking on the r3 website and looking up the symptoms I have Adrenal failure . I have virtually every symptom and was beginning to think I was loosing my mind . I have been so distressed this last few months unable to take the intense summer heat . Anxiety, panic attacks , crying . I have been so unhappy but felt there was some underlying cause. Maybe I can now get to the bottom of it .
Can I ask why you did not get hydrocortisone pills ?
I will take my results to the Doctor if they are that bad as I suspect they will be . Thank you . I am going to increase the Thyroxine to see how I feel .
Guidelines are guidelines and BH don't give any. Ranges are ranges and results are results. BH only give results and ranges. If she is mixing up her vocabulary - most of them do - then it's understandable if no-one understands. I think she probably means that the results were not within the NHS ranges - except that there are no NHS ranges. The ranges vary from lab to lab, according to the machine they use for the analysis. So, at best she's making excuses, at worst she has no idea what she's talking about.
I don’t think I will bother getting another test done till I hear back from the Endocrinologist . I will ring and tell her that’s what I am doing . In the meantime should I increase my Thyroxine ? Or wait to see the Endocrinologist who is away till 23/10 🙄 Thank you Greygoose much appreciated.
I think this NHS "guidelines" that GP's always refer to frankly relates to their budget.
NHS tests seem to give huge ranges, you may be on the floor suffering but still within NHS ranges.
How you feel, how your are, how it affects your everyday life is what matters. Never forget that the word Dis-ease has a meaning. Sorry I know very little re: thyroid, still learning, but you have my sympathies and I wish you strength. j x
Thank you for your response. This Thyroid business is a mine field . I don’t understand it myself . Just know that I feel “ wrong “ . Trying to get to the bottom of it .
It's absolutely essential to take the same dose of T3 EVERYDAY
Many patients, especially with adrenal issues need to take T3 in split doses 2 or 3 x per day
your adrenals can't cope with an intermittent dose
A private prescription for T3 can be ordered online Germany at much cheaper cost (31 Euro for 100 x 20mcg)
All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
When also on T3, make sure to take last dose exactly 12 hours prior to test
If you normally take Levo at night, then you need to adjust dose time before testing
If testing Monday morning, don't take Sunday evening dose until after blood test
Take Saturday evening dose Sunday morning
You left 36 hours between last dose Levothyroxine and blood draw. So result would be slightly higher. But not by much
3 days for last dose of T3, obviously means FT3 result is meaningless
Thank you for the advice . The brand of T3 I have is tiromel from Hong Kong I think . If this is no good can you send me the link for the German supplier ? Please I have not taken it for a week or so . Should I increase My Thyroxine from 50mg as well or just take T3 regularly ?
Yes, the NHS love to waste taxpayers money. Not invented here is common problem. Just make sure that the blood draw is done first thing in the morning, fasting etc. Of course the results aren't "different from their NHS guidelines" as there aren't any - it either means that the reference ranges are different and the GP doesn't know how to calculate percentages or that they wouldn't normally do free T3 and anti-bodies *sigh*. You'd think that an NHS that is always complaining about not having enough money would be glad to have some of the costs borne by the patient - but no.
Thank you for your response . I can’t get to see my Endocrinologist for another month . I am now at a loss as to what to do next . My T3 levels were fine . It’s a very confusing blood test . I took an extra 25mg of Thyroxine last nigh as advised by Greygoose. I have not taken any T3 as that seems to be ok according to my blood test . I am awaiting an Adrenal Test and have ordered a thyroid genetic test from BH. I am trying to help myself .
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