my test results have come back abnormal the GP had been tweaking my levothyroxine for over 6 months now maybe even longer as they were over medicating me
Would like to understand what advise on those results mean for me and what the GP needs to follow
I had a deficiency in B12 been on and off supplements as per advise from GP had a steady 8 months on this supplement and b12 has come back normal
advise to take forward to GP as would like to know if I need to stay on supplement to keep my B12 normal
Test results as follows from my thyroid blood test
Specimen
Specimen Type: Serum
Specimen Reference#: 1
Collected: 02 Dec 2024
Received: 03 Dec 2024
Provider Sample ID: CP221243G
Pathology Investigations
Thyroid function test
Serum free T4 level 14.5 pmol/L 19.7 -
24.71; 99% reference range was applied for adults after review with Endocrinology.
Please note change to method-specific reference range
from 18th November 2024
Serum TSH level 6.9 mlU/L 10.55 - 4.78];
Probably under-replaced; Outside reference range
Written by
Sand11
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I take it that by 'tweaking' you mean 'reducing' your dose, and now he's gone much too far! Which is fairly typical of doctors that just can't leave a dose alone even when you're well. At 6.9 your TSH is far too high and you are now very hypo. It should be 1 or under.
I can't say anything about the FT4 because I don't understand what is written: is the range really 19.7 - 24.71? That would be a very strange range for an FT4. And if that is the range then you are very much under-range, and that too says you're very hypo.
Do you have the numbers from when you were said to be over-medicated?
Do you have Hashi's?
Do you always get your blood draw early morning and fasting (before 9 am), leaving a gap of 24 hours between your last dose of levo and the blood draw?
What time of day do you usually have your blood draw?
Sorry it's more questions than answers, but we do need all the details and numbers before we can say anything much.
Especially for B12. I doubt very much your doctor understands B12 - they know nothing about nutrition in general - but it's highly unlikely that you don't need it anymore. You may have got your levels into the so-called normal range, but they won't stay there for long if you stop the supplements.
When you are hypo, it causes low levels of stomach acid, which makes it difficult to digest food and absorb nutrients. Doctors refuse to believe this is possible, but it's true, which is why we have to take so many supplements.
What's more, with B vitamins, there's not much point in just taking one isoltaed B vit - e.g. B12 - because they all work together and need to be kept balanced. So as well as the B12, you should have been taking a B complex. So, can you tell us the numbers, please? Result and range when you were deficient, result and range now, and how much B12 you were taking and which form of B12 it was: methylcobalamin or cyanocobalamin?
Once we have all the details, I'm sure we'll be able to make sensible suggests for future treatment.
Yes tweaking they have been reducing my medication
I take 50mcg Monday to Thursday and 75mcg Friday to Sunday
This is what I was advised by the GP had to buy a Dorset box
I have blood test between 08:30-09:30 none fasting and I take my medication levothyroxine in morning before I go
I take my medication every morning and wait half hour before having any food or drinks
To the best of my knowledge I don’t have Hashi’s never been told I have that diagnosis
B12 supplement I take in tablet form , from Sainsbury’s
useful info to keep on taking it
I was advised when my bloods were took when results came back normal on my last test before this latest one , to stop taking B12 supplement
I had to challenge the doctor by asking her how she , was going to monitor , my levels
Re- peat blood test shown a drop in levels , hence, why she advised me to go back on taking x1 of B12 tablet a day
My last results for B12 say normal.No further action - however- I need -to contact GP in regards to my thyroid :so I’ll discuss staying on B12 with her then
Thank you so much for the advice to take a vitamin B supplement as well as B12
I will check back on my results for what my levels were when they noticed they were over medicating me …
I think this was when it started march 2024
I think it was in March as per info noted over medicating myself
I have blood test between 08:30-09:30 none fasting and I take my medication levothyroxine in morning before I go
OK, so this is why they thought you were over-medicated. All you were testing was the dose you'd just taken! You have no idea what your usual circulating level of T4 is - which is what you need to know with a blood test. To achieve that, you need to leave a gap of 24 hours between your last dose of levo and the blood test.
And it's better to have breakfast after the blood draw because certain foods, and caffeine can lower TSH.
And the result you can see is that you are now on a rediculously low dose of levo, and you're hypo again. You were never over-medicated at all.
I take my medication every morning and wait half hour before having any food or drinks
Probably better to leave an hour for maximum absorption.
To the best of my knowledge I don’t have Hashi’s never been told I have that diagnosis
No, they probably wouldn't tell you because they don't understand the importance of knowing.
Do you get print-outs of your blood test results? It is your legal right to have one. You need to know exactly what was tested, and exactly what the results were. That way you would see if antibodies have been tested and know if you have Hashi's or not. You need to keep your own records. Just ask for a print-out at reception.
B12 supplement I take in tablet form , from Sainsbury’s
useful info to keep on taking it
Sorry, but I have no idea which B12 they sell in Sainsbury's, I don't live in the UK. But, in tablet form or spray, there are two types/forms of B12: methylcobalamin and cyanocobalamin. It's the methyl you should be taking because that is better absorbed.
But, it's not the B12 you should keep on taking, but a methylated B complex containing all the Bs, to keep them balanced. But don't buy it in Sainsbury's! Get Thorne Basic B or Igennus B complex from Amazon.
And you don't need to discuss it with your GP. In fact, it's better if you don't. Doctors know nothing about nutrients and she's already given you bad advice on B12. So, ask your questions on here and self-treat with nutrients. Leave the GP out of it.
So, the way forward is to get your dose put back up to whatever it was before, and in future follow the protocol laid out on here to get accurate blood test results and avoid inappropriate reductions.
Have you had your folate, ferritin and vit D tested? If not, they need testing, too. And antibodies if they've never been done.
No, leave a gap of 24 hours between your last dose of levo and the blood draw. Take your next dose after the blood draw.
Not surprising no doctor has ever told you that. They just don't know. They haven't a clue about treating hypo, doing blood tests or interpreting them. Which is why so many forums like this one exist.
Having trouble deciphering all that. We really don't need every single word that is on the result, just the date, result and range.
Serum vitamin B12 level 236 ng/L 1220.0 - 700.0]
Something wrong with the range, there. I think you put the decimal point in the wrong place at the bottom of the range.
So that was in May 2024? Your B12 was very low, and you should have been tested for Pernicious Anemia in an ideal world. Was that when you started taking B12? Did you have your folate tested at that time? The two should always be tested at the same time.
Serum vitamin B12 level 309 ng/L |211.0 -911.01;
And this was in Decmeber? Is this when she told you to stop the B12? I can't imagine why! The result is not much better than in May, and still dangerously low. It should be at least over 550. So, you really need to get more B12 as well as the B complex. Look for sublingual methylcobalamin 1000 mcg.
If you were positive for Intrinsic factor antibodies, then that is usually regarded as proof of pernicious anaemia.
If you also were positive for Gastric Parietal Cell antibodies, that ices the cake. But would not, on their own, be sufficient.
Other laboratory tests might be Mean Cell Volume (macrocytosis) and other tests in Full Blood Count. Homocysteine. Methylmalonic acid. But you should immediately be started on injections. Your folate needs checking and, possibly you would need to supplement somehow (there are several options). Your iron levels needs to be assessed. And a good idea to ensure you are getting a reasonable intake of potassium as that can drop in the early stages of treatment. But it doesn't need supplementation - just good dietary choices.
Your B12 issues should have been treated before taking folate.
In some circumstances, folate supplementation can precipitate serious worsening of the impact of low B12. And it will tend to mask issues such as macrocytosis thus allowing B12 deficiency to be missed and have a greater impact.
Ah, but it doesn't show results normal! Far from it. Just because it's in-range doesn't mean it's good. The ranges are far too wide - especially for B12.
Ranges are not goals to aim for - something that doctors don't understand - they are just rough guides, showing you results found in the general population. And for each range you have to know where the result should fall to be more or less optimal, and it's different for all ranges. B12, for example, the range often starts about 100, but that would be a very dangerous level to have. You need your B12 over 550, whatever the range says. Below that you are at risk of permanent neurological damage. So, your B12 is still much too low.
And, if you have Pernicious Anemia (inability to retain B12) you need B12 injections for the rest of your life, not just pills. Have you been diagnosed with Pernicious Anemia?
But, even if your B12 level had come up to over 550, you wouldn't stop taking it because if you did, the level would just drop again. You just reduce the dose and keep on taking it. A B complex is usually considered to be a maintenance dose. But your B12 is so low that you need both the B complex and a separate B12.
So, what were your folate and ferritin levels?
Did anyone tell you to take vit C with your iron tablets? That is very important. Vit C helps with absorption and prevents the constipation that iron supplements sometimes cause.
GP should immediately increase dose Levo to 75mcg every day
Which brand of Levo are you taking
Do you always get same brand
Retest again in 6-8 weeks
Remember to ALWAYS tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement
A week later add a separate vitamin B Complex
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
Igennus B complex popular option. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose and may need separate methyl folate couple times a week
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 until over 500
Post discussing how biotin can affect test results
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