I had a private blood test done in July showing hashimotos and I also had amazing advice on here saying my T4-T3 conversion was extremely poor. I had RAI in 2011 for hyper and am now hypo. Unsure if I had graves before that. I’ve requested my medical history but it’ll probably take ages.
I spoke to the doctor and he has referred me to the endo which is in September but wanted me to get an NHS blood test. Doctor said he doesn’t think the endo will do anything because my thyroid results are ‘normal.’ 😠 So here are the results.
B12 256
(Was 218 in July)
T4 17.2 (11-23)
(Was 18.9 in July)
T3 4.1 (3.9-6.8)
(Was 3.85 in July)
TSH 2.29 (0.3-5)
(Was 2.34 in July)
Anti-thyroid peroxidase abs 165 (<34)
(Was 89 in July)
What do you think? T4 slightly lower but T3 slightly higher. 🤔 Conversion rates have dropped... T4 is 51.67% and T3 is 6.9% so assume this is even poorer? These were 60% and 20% last time.
The antibodies are double what they were. Doctor said ‘take that with a pinch of salt as they’re different labs ‘when I got the results off him. 🤷🏻♀️
Still having symptoms, breathless, low energy, heavy legs, body aches (this comes and goes), weight gain, tired... etc. 🙄
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HypoFrog
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Before seeing endocrinologist strongly recommend you get FULL Thyroid and vitamin testing
You need Vitamin D, folate and ferritin tested as well as B12
What’s range on B12 result
B12 Looks extremely low
What vitamin supplements are you currently taking?
All four vitamins need to be OPTIMAL for good conversion
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?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Hello and Thank you for the reply. I did get vitamin D done and it was fine as I take high strength tablets. Folate and ferritin tested and fine so didn’t include on the post.
B12 range is 200-900 so he said ‘normal’ but yes it’s low. He said this could be diet.
Yes tests have been 24 hours after levo and first thing before food.
What are the through rates? Are these conversion rates? Think I’ve got confused about what these are. 🤦🏻♀️
What’s your diet like...are you vegetarian or vegan?
Please add actual folate result and range
B12 needs improving to at least over 500
Poor vitamin levels often caused by/causes poor conversion
Your recent thyroid results
Ft4 is only 52% through range
Ft3 only 7% through range
When adequately treated Ft3 should be at least 50-60% through the range
You may simply need high dose levothyroxine (Ft4) ...but conversion of Ft4 to Ft3 is currently very low
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
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of 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
An endocrinologist should test for deficiencies in vitamin D, folate, ferritin and B12
But they would unlikely consider a result within range as needing improvement
But patients have found improving vitamins improves conversion of Ft4 to ft3
Eg many Hashimoto’s/Graves patients find vitamin D needs to be at least around 80nmol -100nmol .......but most NHS CCG areas only treat if vitamin D is under 50nmol
Is this endo from Thyroid UK recommended list of thyroid specialist endocrinologists?
Email Dionne for the list, if not got it
tukadmin@thyroiduk.org
Most local endocrinologist are diabetes specialists, and only look at TSH
Aiming to increase dose levothyroxine upwards as first step
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
Not vegan or veggie. Probably eat too much sweet stuff! Recently cut down on gluten due to hashimotos (though I read this could be Graves) and cut down on carbs and sweet stuff!
I didn’t actually get the folate result on the phone. He just said it was normal but I have requested a copy of the full results. They tested iron too which was normal but unsure on the figure.
I’ve always been kept at the higher end of the T4 bracket previously and my dose was put up earlier this year but it seems to have dropped again.
When it was higher, I still had the symptoms. I’m not sure if a higher T4 also increases my anxiety or not.
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,
Recently cut down on gluten due to hashimotos (though I read this could be Graves)
To prove that someone has Graves' Disease they need to have their TSH Receptor Antibodies (TRAbs) measured. Another antibody that appears in Graves' is called TSI (although I'm not clear if TRAB and TSI are the same antibody with two different names or are two different antibodies):
People with active Graves would have extremely high levels of Free T4 and Free T3 - way over the reference range - they wouldn't have the low levels of Free T3 that you have, so there is no need for you to worry about Graves'.
TPOAb and TgAb may appear in people with both Graves' and Hashi's. But neither of these antibodies is proof of Graves' by itself, you'd need TRAB or TSI measured for that. In the following links click on the + signs for more info :
As you have already acknowledged yourself, your conversion of your T4 into the active hormone T3 is poor - both these vital hormones will need to be in the upper quadrant of their relevant ranges for you feel well and loose these debilitating symptoms.
Your TSH is too high and you do have room to increase your thyroid homone medication, which will take the TSH down and you'll feel a bit better when you get this number under 1.
However, no thyroid hormone replacement works well if ferritin, folate, B12 and vitamin D are not optimal - and by this I do not mean taking a doctor's opinion on what s/he considers acceptable - sadly they don't get training on vitamins and minerals and seem to believe if you are in the range somewhere you are ok .
We need the blood test results and the ranges as the ranges can be too wide to be sensible.
I now supplement all four of these essential vitamins and minerals as I've come to learn that I feel much better when, for instance, my ferritin is at around 100, which in turn must mean it enables my body to convert better the T4 into T3. - I think the range is ferritin is something like 15 - 150 - so you could be at 16 or 149 and considered " in range and needing no treatment " - well not for optimal health and optimal conversion of thyroid hormone replacement.
It will be in your best interest to get these vital vitamins and minerals tested before the endo appointment and give us a chance to see if your poor conversion of T4 into T3 is solely due to low levels of vitamins and minerals and, or, if you also need to be considered for a prescription for Liothyronine T3.
Since you have had RAI thyroid ablation you have lost your own thyroid hormone production which is said to be about 100 T4 + 10 T3. and I read that T3 is about 4 times more powerful than T4 and that most healthy people utilise about 50 T3 daily just to function.
Personally, I just think it makes common sense that both these vital hormones be on the patients prescription for if, and probably when, they will both be needed to offer the patient some help in regaining their health and wellbeing.
So, as I think as I've mentioned before, you have in effect been down regulated by about 20% of your overall well being by not being prescribed those same two known and able to be prescribed medications Levothyroxine and Liothyronine.
Thank you for your reply. I don’t think my doctor will do anymore tests now as he kept saying we will see what the endo says.
I’ve requested copies of the last blood test which does have folate and iron on plus my vitamin d and I have the b12 number. Is that the main ones I need?
It sounds as though your doctor is out of his depth and passing the buck to an endocrinologists but sadly there's no guarentee this specialist knows thyroid and may well be a diabetic consultant, first and foremost.
Yes the 4 main vitamins and minerals are those previously mentioned, and there are private companies listed on the Thyroid uk website who will undertake blood tests when your doctor isn't able to action these for you, but I've just looked back and you have all the relevant informtion from SlowDragon on here today.
Well yes, when you actually get the numbers keep us in the loop, so we can talk through anything that needs to be actioned.
Thank you. The consultant I’m seeing is a thyroid specialist and is on the endo list from thyroid UK and has recommended T3 prescription before so 🤞🏻🤞🏻🤞🏻
OK - ferritin needs to be increased up and I aim for around 100 :
I aim for a folate of around 20 : I think the folate will increase, as you improve your B12 : Has your doctor suggested anything regarding this level as suggested by SlowDragon ?
So, Asda do frozen little pots of chicken livers : they are clean and mild and I use 1 pot a week to maintain my ferritin level : defrost and flash fry in a little olive oil, and then whizz down into a pate and keep in the fridge : a spoonful each morning, maybe with a little mayo - helps this medicing go down and your ferritin level go up :
I don't know, as there are many options out there, including tablets, syrups and natural water supplements - your level isn't dire, but you'll improve a little if you get a little further up the range.
Typing with fingers crossed - apologies for any typo's.
Well, yes, they are in the " normal " range as the NHS is not obliged to write a prescription : my ferritin was " normal " at 22 and I couldn't stand up long enough to watch the kettle boil !!!
Well, my normal is where I feel better for me : I've Graves Disease and have drunk the NHS toxic substance radioactive iodine, poisoned my whole body and burnt out and disabled my thyroid and now also have hypothyroid to contend with and none of this is normal either ????
Being within the range somewhere so not necessarily ok - as it is where you are in the range that gives you the best chance of being in optimal health rather than at the bottom of the range and dealing with unnecessary, disabling symptoms.
We are dealing with an AI disease that can choose to disable our whole body when not optimally medicated.
Thanks pennyannie. Yes I wish I hadn’t had RAI. I’d be interested to know if I had or was tested for graves before I had it. I think I probably did and therefore still do if I’m right?
I’ve requested my full thyroid background to try and find out although the doctors moaned at how long this would take.
the anxiety I caused myself asking for answers only compounded my ill health so as you know I backed off and ultimately have repaired myself like Humpty Dumpty ;
Thinking on - I see above Slowdragon has suggested supplements for B12 and folate - I started off on both these and then after around 2 years was able to drop the B12 and now maintain my B12 and folate with just 1 Igennus Super B complex -
I left things much too long and was very unwell - I'm sure you'll not take as long as me getting back to being well.
Hello pennyannie... I got my medical history but it’s not too helpful.
I mainly wanted to know if I’d been tested or has Graves.
One letter had a diagnosis on the top of ‘thyrotoxicosis probably Graves’ but there had been no test of antibodies at that point as far as I can see. And then later on they’ve tested for thyroid peroxidase antibodies which doesn’t make sense to me as that’s for Hashimotos not Graves isn’t it? However, they were negative.
So it’s still a mystery how I can have Hashimotos now, without a thyroid and I didn’t seem to have it before although ‘probably’ had Graves and therefore probably still have Graves.
Oh, I'm sorry to read that - it doesn't leave you any further forward and probably leaves you more upset, confused and disappointed in the whole set up.
I have to say I wasn't prepared when diagnosed with Graves either, I doubt many people are, and was totally compliant and trusted in everything I was told.
Back in 2005 there was very little support and it took a lot of courage for me to even question my doctor, some four years ago, when I had gained some understanding of my current situation through this amazing website.
I've had to be my own best advocate, it hasn't been easy, but it was worth the effort.
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