Hi, I recently posted as a Newbie (under the name Sailorbo, which I've now discontinued as I had a previous registration with the BHF).
As a quick recap, had a full Thyroidectomy last September due to Papillary Cancer. I'm not having Radioactive Iodine as I already have poor saliva and it might make it worse. I have been on 150mg Levo up until 2/3 weeks ago when consultant suggested reducing to 125mg 2 or 3 days a week as I was experiencing some chest pains. I have a stent and coronary artery disease/angina and am on meds for that. Consultant arranged for a PET scan 2 months ago which was clear.
I have been having blood tests every 8 weeks or so, but was not told that I needed to stop Levo for 24hrs and then to have the blood test before 9am, nor to stop having milk in my morning decaf tea! Following the fantastic response on here I'm now having the Levo in the night when I get up for the loo, and as suggested on here I've just done a Thyroid and Vitamin test with Bluehorizon, (No Levo for 24hours before and blood test at home at 0800) and the results are just in. These results are based on a combination of 125mmg and 150mg Levo over the last 10 days or so.
TSH: 0.51 mU/l (Range 0.27 - 4.2) 6.11%
Free FT4: 25.9 pmol/l (Range 12 - 22) 139.00%
Free FT3: 4.39 pmol/l (Range 3.1 - 6.8) 34.86%
T4 Total 135.0 nmol/L Range 66-181
Anti-Thyroidperoxidase abs = 92 Range less than 34 IU/mL
Anti-Thyroglobulin Abs = 151 Range less than 115 IU/mL
Vitamin D = 97 Optimal range 75-200nmol/L
Vit B12 = 330 Range 145-569 pmol/L
Serum Folate = 21.70 Range 8.83-60.8 nmol/L
Ferritin = 420 Range 30-400 ug/L
Mg = 0.98 Range 0.66-0.99mmol/L
I've worked out the percentages on your site calculator ....dopiaza.
I know my consultant is trying to keep my TSH low so as to keep any rogue cancer cells at bay by keeping my Levo amount at a slightly high level, but don't really understand this.
Any thoughts on these levels and many thanks for a great site and for all your help and advice.
Written by
Devonlad
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TSH. Thyroid Stimulating Hormone is a pituitary hormone which signal thyroid cell to work.
Your thyroid has been removed but should any residue cell remain a high TSH would stimulate those cells.
Your FT4 (Levo) is high to stop the TSH rising but the body needs to convert it to the active FT3.
Your FT3 is too low. Low FT3 = hypothyroid symptoms, even if FT4 high.
Ideally FT4 should be top of range not over and FT3 50%. This is where most feel well.
Checking nutrients- folate, ferritin, B12 & Vitamin D are optimal (not just in range) can help conversion, but otherwise you need lio (T3) which has a very restricted criteria so doctors consider it unavailable.
We usually say B12 over 500 and folate at least half way through range
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) . This can help keep all B vitamins in balance and will help improve B12 levels 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
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 1-2 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Improving low B vitamins may/should improve conversion rate of Ft4 to Ft3
Especially as you tested very soon after changing dose and how you take your levothyroxine
Ideally……..Looking for Ft4 and Ft3 to be at similar levels through range. Actual % each person needs is going to be slightly different, but likely to need at least 50-60% through range
Retest again in 6-8 weeks
Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test
Which brand of levothyroxine are you currently taking
Do you always get same brand levothyroxine at each prescription
Many people find different brands are not interchangeable
If Ft3 doesn’t improve
Roughly where in U.K. are you……Devon?
Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3
There are a few on NHS
tukadmin@thyroiduk.org
In Devon CCG area ….there’s a limit of 10mcg T3 per patient per day (regardless of clinical need)
Many people on levothyroxine plus T3 will need 3 x 5mcg per day or 20mcg divided up as 2 or 3 smaller doses per day
Thanks for your comprehensive reply. I'll study more closely tomorrow.Yes I do supplement Vit D 1000IUs, have been since Covid started.
I'll look at Vit B how much do you suggest?
I'm currently on MercuryPharma levo, but also have some Teva. How do I know which is best, I just take as given by pharmacist, I've also just been resupplied so have about 4 months supply.
Do you think I should be taking T3? If so how much.
Yes I do live in West Devon and will email for list of specialist thyroid endos
I'm currently on MercuryPharma levo, but also have some Teva. How do I know which is best,
Many people react badly to Teva
It can be tricky to asses if, for example, you are taking 50mcg and 25mcg Mercury.
If you were taking 25mcg Teva and 50mcg Teva …..you might see more obvious issues
Teva contains mannitol as a filler, which seems to be possible cause of problems. (It can change the way gut biome works)
Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free tablets
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesn’t make 25mcg tablets
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
It is essential that you are dosed and monitored on your Free T3 and Free T4 blood test results - which if well managed will ultimately end up with your TSH being supressed anyway.
The accepted conversion ratio when on T4 only medication is said to be 1 / 3.40 - 4.50 T3/T4 with most people feeling at their best when they come in at around 4 or under.
To find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours coming in at 5.90 showing you very wide of centre and with a T4 over range and over replaced as planned by your consultant.
You may well feel more comfortable dropping a little T4 to bring it into range and adding in some T3 - Liothyronine - as we generally feel at our best when our T4 is up in, or towards the top quadrant of it's range with the T3 balancing out at around, at least, over 50% through the range.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.
The body runs on T3 - nor T4 - T3 is said to be around 4 x more powerful than T4 and once converted into T3 we need around 50 T3 daily just to function with the heart and brain taking the lions share of the T3 - and T3 lowers the TSH :
Some people can get by one T4 only :
Some people find they need to replace that little bit of T3 they once had, before loosing their thyroid - making a T3 + T4 combination of medication.
Some people can't tolerate T4 and need to take T3 only :
Some people find their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and which was used successfully to treat hypothyroidism for over 100 years.
All the above treatment options were readily available through your doctor up until around 20 years ago when systematically they were unencouraged.
Currently in primary care your doctor only has T4 at his disposal and a referral to endocrinology is required should you wish to seek an alternative treatment option which currently is a post code lottery based more on costs than patient medical need.
N.B.
Obviously optimal thyroid hormone conversion of any treatment option required optimal ferritin, folate, B12 and vitamin D and conversion can also be compromised by inflammation, any physiological stress ( emotional or physical ) dieting, depression and ageing.
My thanks pennyannie, SlowDragon and PurpleNails for your responses and advice, sorry about the delay in getting back. I am thinking about just keeping on the 125mg and not the 150mg mix I'm supposed to be on. Though I don't know how long it will take for me to get used to this new regime.
The reason for this response is that I'm finding that I have little energy, and if I do even mild exercise like walking I get very hot, sweaty, uncomfortable and sometimes a bit shaky, this does seem to be worse during this hot weather though improves once I've cooled down.
Do you think this could be because my Levo is still too high and I am getting a bit hyper?
Also, do you have any advice on how to cut 50mg tablets in half, I have tried a tablet cutter I bought recently and find the pills tend to break up into many pieces?
I really do appreciate all the help and assistance I get on this site, I have learnt soooo much about my thyroid over the last few weeks.
I wouldn't think so as your T3 is well in the range at just around 35% through :
Most people feel better when their T3 is around at least 50% through the range :
Hyperthyroidism and hypothyroidism are the extreme opposite ends of and same T3 stick - too low a level of T3 and you have symptoms of hypo symptoms just as at too high a level of T3 for you - you will have hyper type symptoms.
You can't ' go hyper ' once hypo : you can't ' go hyper ' when you haven't a thyroid BUT you can be over medicated - and currently you have an imbalance in your T3 and T4 levels - a T4 at 139% with a T3 at around 35% -
These 2 vital hormones need to be balanced at around a 1/4 ratio T3/T4 :
Look at the ranges and see where the base of each range starts :
The current weather isn't helping one little bit -
I'm stuck behind blackout blinds way down as my eyes can't deal with brightness and without a thyroid I find it difficult to control my temperature quickly enough to be outside, comfortable and able to respond well this summer.
P.S. Suggest you dip into Thyroid UK the charity who support this forum where you find a list of both hypo and hyper symptoms - as it does get confusing knowing what is what - and it might just help you in your understanding of symptoms - though as with everything it's not that simple as some symptoms are experienced in both the hypo and hyper camps. and that's when your blood test has the definitive answer as it's all about where your T3 sits in this range and generally speaking we need T3 be at least over 50% through with a reading on the T4 at around 15% higher.
I shouldn't have used the word hyper, it's just that some of my symptoms seemed to indicate too much T4 (I think!!). So in my little brain I think by reducing T4 intake that might improve the T3/T4 ratio, or would T3 also fall as well. So then I would ask how do I improve my ratio, unfortunately it seems as if the T3 medication route is either a non starter or going to be somewhat tortuous. I have today started taking Vit B complex (Thorne Research Basic) and upped my Vit D (with K2) to 1600 IUs, which will hopefully improve the T4 conversion. Did you have any thoughts on the best way to successfully halve my 50mg Levo tablets as the pill cutter I bought just seems to break them up. Many thanks, and like you I've retreated indoors to keep cool.
Hey there - unless you actually reply to someone in particular you risk the chance of not being read - as people tend to move to a new question when they feel they have nothing else to say - so yes, still in doors now as it's pouring with rain here, and likely there.
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