I am writing to my Endocrinologist and, as I am fed up with the run around, I want to go to my next appointment, fully prepared. My GP said I was due to be seen in March by the Endo and was surprised I had not heard anything.
I’ve made this table out to keep a record of my readings so I can take it with me. Could someone advise me on figures for the first three columns? (If there is such a list?)
I put in the ranges I found on Thyroid UK. I started to insert ‘Optimal Levels for me’ but left it as my sources of information varied so much or clashed. I thought I would leave it to the experts! 😉
When I went in to my Medichecks account to retrieve my test results for 14/11/19, I noticed the Dr had left me a note saying the following:-
Normal levels of B12 but at the lower end of the range, to work out if you have an underlying deficiency, I recommend a serum methylmalonic acid test’. (I totally missed this note)
He also said iron levels were slightly high. If I was taking a supplement, to decrease it slightly.
Folate was low. Increase folate rich foods and consider a supplement.
Your T3 is normal.
Your antibodies indicate an autoimmune reason for your symptoms
(The D3 ... already dealt with now.)
He didn’t mention T4 or ratio between T4 to T3. Or indeed, TSH.
Is there anything I should add to the left hand column? (Let’s face it ... it is only private testing where I will have something to put in to those usually). Is there such a thing as ‘NICE Guideline Ranges’? Couldn’t find anything online that jumped out at me.
Thanks in advance. 😀
(I am booking another Medichecks Test today - the Ultra Vit one probably)
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Aslangal
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GP should have prescribed LOADING dose vitamin D ...did they?
Loading dose vitamin D is 300,000iu over 6-8 weeks.thats typically 5000iu per day for 8 weeks or 7000iu per day for 6 weeks. Important to get levels retested at end of prescription - was this done?
Vitamin D supplementation was safe and it protected against acute respiratory tract infection overall. Patients who were very vitamin D deficient and those not receiving bolus doses experienced the most benefit.
are you now prescribed folic acid supplements and regular B12 injections?
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. This may be more beneficial than just folic acid.
B vitamins best taken in the morning after breakfast
Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. (Or even half a tablet per day for first week) Retesting levels in 6-8 weeks
Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
@SlowDragon sorry, I didn’t clarify - I just needed some advice on the table and not put you to the trouble of analysing those results again.
* My Vit D was sorted but I had to do my own private test after loading dose as Endo said unnecessary. Second Test was 74nmol and I’m using BetterYou 3000iu mouthspray. (Endo only prescribed 800iu tablets)
Note your recommendation of 80-100nmol 👍🏻
. Just received today the K2Mk7 supplement and magnesium.
.B12 & Folate - Both Endo & GP said my B12 was ‘ok’ and no need to supplement based on those results! However Medichecks advised supplement.
. I’m not veggie/vegan. I eat a good healthy diet with lots of variety on veg and lean meat. I’m finding it hard to go totally gluten free!
Why 'lean' meat? The body needs fat and animal fat is one of the good fats. Don't avoid with some crazy idea that eating fat makes you fat, or that it raises cholesterol levels. It doesn't do either.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.
Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
Get rid of the green column. The ranges on ThyroidUK's website are an example only, that is made quite clear on a couple of their pages:
Be aware that different areas in the country use different test ranges so one TSH test range might be 0.5 – 5.0 but in another area the TSH range might be 0.4 - 4.0.
and
There is a range, which is used for the tests. These vary sometimes which is why you must always ask what the range is, so that you can see where you are in the range.
You can only use the range that comes with your results, no other range, so to avoid any problems don't use any other range that you may see.
**
I started to insert ‘Optimal Levels for me’ but left it as my sources of information varied so much or clashed. I thought I would leave it to the experts!
Not quite sure I follow that. Only you know where your levels need to be for you to feel best, nobody else can tell you that and nothing you read can tell you that. You will find out from experience of different doses and how you feel on them. Is that how you arrived at the figures in that column?
**
Also get rid of Reverse T3/FT3:rT3 ratio. Reverse T3 is generally not recognised by the NHS and there are many, many causes of high reverse T3, only one of which is to do with the thyroid - a build up of unconverted T4 and that will show with your FT4/FT3 results.
Other conditions that contribute to increased Reverse T3 levels include:
· Chronic fatigue
· Acute illness and injury
· Chronic disease
· Increased cortisol (stress)
· Low cortisol (adrenal fatigue)
· Low iron
· Lyme disease
· Chronic inflammation
Also selenium deficiency, excess physical, mental and environmental stresses. Also Beta-blocker long-term use such as propranolol, metoprolol, etc. Physical injury is a common cause of increased RT3, also illnesses like the flu. Starvation/severe calorie restriction is known to raise RT3. Diabetes when poorly treated is known to increase RT3. Cirrhosis of the liver. Fatty liver disease. Any other liver stress Renal Failure. A fever of unknown cause. Detoxing of high heavy metals.
So testing rT3 can tell you if it's high but not why it's high, it's an expensive and unnecessary test.
**
Instead of "Changes since last test" I would make sure that you noet down what dose of Levo you were taking when that test was done and if the dose was changed on sight of the results. I would also do a column for notes on how you felt at the time of the test,eg symptoms, felt better or worse if dose had been changed and in what way.
**
Normal levels of B12 but at the lower end of the range, to work out if you have an underlying deficiency, I recommend a serum methylmalonic acid test’. (I totally missed this note)
This is the test for B12 deficiency/pernicious anaemia which was suggested previously you asked your GP to do. You need to ask your GP if he actually did the MMA test. You said you had a negative PA test, but apparently this test can give false results.
Did you check for signs of B12 deficiency from the link you were previously given? Doctors are supposed to go by symptoms not numbers where B12 is concerned.
**
You said last week you've had another Medichecks test since that test when your Vit D was 74nmol/L, you need to add another column for your new test results and keep it updated.
First column: Forget rT3 and rT3 ratio. They are not relevant at this level, they're more for research purposes. The rT3 test is expensive, and doesn't give you any useful information for your purposes. It will tell you if your rT3 is high but won't tell you why. And, there are many many reasons for high rT3, and only one of them has anything to do with thyroid. Even if your rT3 is high, it does not cause symptoms, and has no effect on your T3. A thyroid related high rT3 will be caused by poor conversion, not the cause of poor conversion. Your rT3 will be high because your FT4 is high, and you need it high to get just mid-range FT3. You are a poor converter, which is frequent with Hashi's sufferers.
Both your TPO and Tg antibodies say that you have Hashi's. There is no point in retesting them. Antibodies fluctuate but you will always have Hashi's, that won't ever go away until your thyroid has been completely destroyed.
TRAB is for Grave's. There is not reason to suspect you have Grave's.
Second column: I don't know if there are any NICE suggested ranges, but even if there are, they wouldn't be reliable. Ranges are not fixed, there are no international ranges. They are calculated according the machine used for the analysis and the local population. Therefore they vary from lab to lab. You need to use the ranges provided with your results. The ranges on TUK are just examples, you cannot use them to interpret all results. The ranges you've put in your 'range' column are frequently seen, and are the ranges used by Blue Horizon, I believe, but there are many variations in ranges.
And, all that makes the third column redundant, too. There is not a range that goes for the whole of the UK, whether for adults or anyone else. And, ratios are only relevant to euthyroid people. Hypos are going to have their own specific needs and individual requirements for levels. There is no one ratio that you should be aiming for. You need what you need, not what a ratio says you ought to need. Aim to be well, whatever it takes regards levels and ratios.
Column four: How would you know the optimal range for you? In any case, it would be more likely to be a fixed point than a range. And, even that could change over time, because hypothyroidism is not a static disease. It evolves. Do you really think you feel at your best with a TSH of 2? Most hypos need it below 1.
The last column would need to be a percentage. As ranges vary, it's difficult to compare results unless you convert them into percentages. Here is a handy calculator for calculating the percentages:
In the first box you put the T4 result. In the second, the bottom number of the range. In the third, the top of the range. Below, you do the same thing for T3, if you have it. Then you click on the button underneath and the percentages will appear.
. Optimal levels - yes I was basing it on typical for Hashimoto’s but of course, we are all different so I understand now why it was confusing me. Yes got the figures from books and articles. Scrapping that one ✅
. Reverse T3 I had read can often be elevated during sickness, injury or trauma? I will remove that as well as the FT3:rT3 ✅
. ‘Changes’ - will adjust that with your advice thank you ✅
B12 - I’ve got nowhere with this, inspire of asking. All I got was what I said further up ‘levels ok - no need to supplement’. I will ask the Endo to clarify and if MMA was done. And yes ... I absolutely 100% had some of those symptoms which was what prompted me to go to the Dr in the first place. I actually said ‘something is seriously wrong because I do not feel right’ Four weeks later, I took the Medichecks Test based on yours and others advice here ✅
. New column for updated results - now I’ve got rid of a couple, I can add those in (I was going to do a separate sheet for each test) ✅
. No Grave’s then? Did I have Grave’s do you think when they gave me RAI (they have no idea where my notes are. The most recent letter from the Endo asked my GP to find this info) 👍🏻
. NICE - am I right in saying that NICE say the upper range for TSH is 10.0?
. Need what I need in the ratios 👍🏻
. Optimal column - gone 👍🏻
. Last column - use %
. See previous post in replies as to changes and adding notes on how I feel also.
Thank you for taking the time to look it over and reply 🥰
. No Grave’s then? Did I have Grave’s do you think when they gave me RAI (they have no idea where my notes are. The most recent letter from the Endo asked my GP to find this info) 👍🏻
Ah. I didn't know you'd had RAI. But, all I can say is: not necessarily. So many doctors don't know the difference between Grave's and Hashi's, and give the wrong diagnosis.
. NICE - am I right in saying that NICE say the upper range for TSH is 10.0?
Not exactly. What they say is that despite the range, a diagnosis shouldn't be given until the TSH reaches 10.
. Need what I need in the ratios 👍🏻
You don't actually need a ratio at all. It's irrelevant.
I don't think you've quite understood the process for tagging people. Yes, you put @ infront of the name, but then you have to click on the person's name in the drop-down (or up) menu that appears, so that the name turns blue. People won't be notified unless their name turns blue:
SlowDragon
SeasideSusie
Alternatively, you could just click on the blue 'Reply' button under their comments.
There is a high (approx 40%) prevalence of B12 deficiency in hypothyroid patients. Traditional symptoms are not a good guide to determining presence of B12 deficiency. Screening for vitamin B12 levels should be undertaken in all hypothyroid patients, irrespective of their thyroid antibody status. Replacement of B12 leads to improvement in symptoms,
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