I’ve been on Levothyroxine since 2008 after receiving RAI treatment. I’ve been prescribed 100mcg over the past few years , My symptoms go up and down, sometimes hypo , sometimes hyper symptoms.
In a previous post I outlined the problems I’ve had with my gut over the past couple of years, all investigations were normal, so I’m trying to manage this with advice from this amazing site .
I’ve recently been feeling unwell . I’ve had my thyroid bloods checked by Medichecks on 27/0220 .Results were:
TSH 0.24 (0.27-4.2)
T4 18.8 (12-22)
T3 3.63 (3.1-6.8)
I just received my blood results today ,which were done by my G.P. on 5/ 03/20
I persuaded him to check my T3 as he only goes by TSH and unfortunately is not well informed on significance of T 3
G.P. results:
TSH 0.13 (0.27-4.2)
T4 21.1 (12-22)
T3 4.9 (3.1-6.8)
He also checked B12 : 350 (191-663). Ferritin 74.4 (13-300) Folic acid 10.7 (3.89-26.8)
I just got a phone call from receptionist at surgery to say my G.P. wants me to reduce my Levothyroxine from 100mcg to 75mcg and to repeat my bloods in a month.
I would be so grateful for any response to this , is this reduction of levo the way to go? I’m confused!
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Golli
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Refuse to reduce dose of levothyroxine, and that you would like retest in further three months, or a referral to endocrinologist of your choice for possible prescription for T3 alongside levothyroxine
Take in these results from Medichecks too
Ft4 18.8 (12 - 22
FT4 68%
Ft3 3.8 (3.1 - 6.8)
FT3 18.92%
GP results
FT4 21.1 (12 - 22)
FT4 91.00%
Ft3 4.9 (3.1 - 6.8)
FT3 48.65%
Were both tests done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
Most people need Ft3 at least around 60% through range on just levothyroxine
Medichecks result shows extremely poor conversion of Ft4 to Ft3
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. 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
Thank you so much for all your information, I will try to put my point accross to my Gp but i know it will be difficult as he is so adamant and really believes that the TSH is the most important result .
In answer to your questions ,
Yes, my bloods were done fasting with last dose of levo 24 hrs before test.
No, i haven't had my vitamin D tested, I haven't yet had a full vitamin check done with Medichecks, but i intend to do so.
Yes, I've been tested for coeliacand it was negative. I'm not on a gluten free diet.
No , I havent had my thyroid antibiodies tested as far as i know. They may have been done by endo, intially , but i don't know if this was done.
I was under care of an endo around the time of my RAI in 2008 and for some 3-4years afterwards but was discharged to care of GP from about 2012.
At the moment i'm undergoing tests for leukaemia (C.L.L)
So this is foremost in my mind at the moment. I've had first consultation with haematologist and awaiting results of more specialist blood tests and will hopefully find out more when i see haematologist in 2 weeks time.
I don't know if this has any bearing on my thyroid issues, but i have read somewhere that RAI has caused leukaemia in a small percentage of patients! Trying to keep positive but feeling a bit vulnerable at mo., So not confident in my performance in telling in GP. i don't want to reduce my levo!
Suggest you say, you have a lot of other health issues going on and the last thing you need is to be messing with your dose of levothyroxine. Plus as your Ft3 is no where near top of range you won’t be reducing dose
Request GP tests vitamin D (likely to refuse)
Or say you will be testing vitamin D yourself and working on improving vitamin levels and trying strictly gluten free diet as these can improve conversion of Ft4 to Ft3
You will retest Thyroid and vitamins yourself privately in 3 months and review then
Recommend you test thyroid and vitamins via Medichecks- this includes thyroid antibodies
1) Were both tests done under exactly the same conditions, i.e. same time of day, preferably no later than 9am, after an overnight fast with breakfast after the blood draw, and water only to drink before the test (no coffee)? If you had a later blood draw, ate breakfast and drank coffee, all those things affect the TSH result.
2) When was last dose of Levo before both tests? Last dose of Levo should be 24 hours before blood draw? If you took your Levo before the test then this gives a false high FT4 result.
3) Did you take Biotin or a B Complex in the 7 days before the test? Taking Biotin can give false results.
If your results are accurate then it looks like your GP is adjusting dose purely by TSH result which is wrong. TSH is not a thyroid hormone - FT4 and FT3 are the thyroid hormones and tell us if dose needs changing, particularly FT3. If FT3 is over range then we are overmedicated.
If those results are accurate then it would seem that you conversion of T4 to T3 is poor.
Good conversion needs optimal nutrient levels.
B12 : 350 (191-663)
This is low. What is the unit of measurement - pmol/L or ng/L or pg/ml.
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."
You may wish to supplement to improve this level.
Folic acid 10.7 (3.89-26.8)
B12 and folate work together. Folate is recommended to be at least half way through range which would be approx 15+ with that range.
To improve both B12 and Folate you could supplement with a good, bioavailable B Complex. I like Thorne Basic B, others here use Igennus Super B.
Ferritin 74.4 (13-300)
Ferritin is recommended to be half way through range which with that range is 156. Your level isn't dire but could be better and I'd aim for 100+.
You can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, also liver pate, black pudding, and including lots of iron rich foods in your diet
You really need Vit D testing. If GP wont do this then you can do it with a home fingerprick bloodspot test offered to the general public by an NHS lab for £29:
Once all nutrients are optimal, if conversion is still poor then it may be worth considering the addition of a small amount of T3 to your Levo (Levo dose may or may not need to be lowered depending on new results at the time).
Your current results do not suggest that your Levo needs reducing. Both FT4 and FT3 are in range. You can use the following to discuss this with your GP:
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the magazine for doctors):
"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).*"
*He recently confirmed, during a public meeting, that this applies to Free T3 as well as Total T3.
You can obtain a copy of the article by emailing Dionne at
tukadmin@thyroiduk.org
print it and highlight question 6 to show your doctor.
Thank you so much for all your information. Please check my response to Slowdragon as that will answer some of your queries.
I will print out copy of article you reccommended and show to GP , but i won't hold my breath, as he really believes and is adamant that TSH result is the most important one and the one he basis his treatment on !
I wouldn't reduce levo when it isn't over-range. Your free T4 is much higher in range than your free T3 - so I agree with SlowDragon - you probably need more T3 in your system ... reducing levo won't achieve this (unless you replace with lio)
Im feeling very tired , aches and pains in joints , just not up to par.
Mood not great , brain fog, but if you read my response to SlowDragon , i am undergoing tests for ? leukaemia (C.L.L) and will know more when i go back to see haematologist in 2 weeks when i will hopefully get results of the specilist blood tests done on first consult with haematologist.
You poor thing - last thing you need is less levo when you have other health worries. Good luck with the leukaemia test and big hugs from the south coast
In short, no, a reduction in Levothyroxine is not the way to go, but this is probably what your doctor will suggest.
Do you have Graves Disease, were you on AT drugs, like Carbimazole, and then had RAI and then a discharge back out into Primary care with a prescription for Levothyroxine and monitored on just a TSH / T4 blood test ?
Your conversion of the T4 - Levothyroxine into T3 - the active hormone that the body runs on, is not good, and a reduction in Levothyroxine will no doubt reduce your T3 further, causing more disabling symptoms.
Most people feel well when both T3 and T4 are in the upper quadrants of the reference range coming in with a conversion ratio of about 1/4 : your conversion on both blood tests, ( just divide the T3 into the T4 ) is way over 1/4 - with your Medichecks result giving a ratio of 5.18 and your NHS test giving a ratio of 4.5 :
Since you have had RAI your feedback loop in broken and you must not be dosed or monitored on a TSH / T4 blood test, but on a T3 and T4 blood test.
If you have Graves Disease it is acknowledged that the TSH is an unreliable marker of anything as we have TSI/TRab antibodies sitting on our TSH receptors thereby ' looking ' as though we are over medicated when in fact the opposite is more likely to be the reality.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 plus 10 T3. and personally I just think it makes common sense that if there has been a medical intervention and the patient had either a thyroidectomy or RAI thyroid ablation that both these vital hormones be put on their prescriptions for if, or probably when, they will need them in order to regain full wellness.
Some people can get by on T4 - Levothyroxine alone, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of wellness acceptable to the patient.
T4 - Levothyroxine needs to be converted by your body into T3 - the active hormone that the body runs on, and I read most people use about 50 T3 daily in order to function and that T3 is about 4 times more powerful than T4 - Levothyroxine.
Your conversion of T4 into T3 can be compromised if your ferritin, folate, B12 and vitamin D are not optimal but either way, as no doubt you have now realised, you have lost this little bit of T3 that your own thyroid supported you with and that equates to about 20% of your overall daily needs and well being.
I was in a similar situation to you a few years ago.
With the help of this amazing website and much reading up I managed a dose increase in Levothyroxine, rather than a reduction and a referral to endocrinology for a trial of T3.
I was refused the trial as by the time my appointment came around, my TSH was suppressed and this was used as the reason not to put me forward for a trial of T3.
Ultimately, I trialled T3 for myself and felt much better, I have now moved over to full spectrum thyroid hormone replacement and have my life back. This has meant however that I am buying my own medication and monitoring myself.
There are full details on my profile page should you wish to ' look at me ' a bit closer, but in short, I'm with Graves Disease and had RAI in 2005 - a treatment I deeply regret. I now manage lingering Graves, thyroid eye disease and hypothyroidism and have found no help nor understanding within the NHS system, and now self medicate with NDT.
I’m so grateful for your advice. Like you , I deeply regret the fact that I had radioactive iodine’s treatment, but trusted the endo’s advice at that time , as I knew no better ,
Yes I was on AT treatment, Carbimazole , for about a year before I had the RAI , and after a few years discharged back to G.P. management.
I think I will chance my arm and ask G.P. to transfer me back to endo, for T3 trial, but he has no understanding of it’s importance, so I won’t hold my breath,
I’m gonna to take a little more time to digest all your really helpful information , when things settle down here ( my house has been very busy with visitors) . And read your profile page as I would be interested to know how to obtain T3 medication in UK, if it is required for me .( Would it be ok to p.m. your for that info?)
You might like to check out the Elaine Moore Graves Disease foundation website in the states. This lady is a medical researcher and was diagnosed with Graves in the late 1990's and given RAI treatment. She found no help nor understanding with her health issues so wrote a book to help others who might also be struggling and getting nowhere.
She now runs a very well respected and researched stateside website into all things Graves and auto immune and there is also an open forum much like this amazing forum.
There is also a book written by a doctor who has hypothyroidism. Your Thyroid and How To Keep It Healthy by Barry Durrant - Peatfield, is a relatively easy read, insightful and sometimes funny, and is everything we need to know about the thyroid and how we can try and make up for the fact that we have lost such a major gland.
I am not taking T3 any longer so my contact not current. I am now on full spectrum thyroid hormone replacement. Natural Desiccated Thyroid ( NDT ) is pig thyroid dried and ground down into tablets, referred to as grains and contains all the same known thyroid hormones that we once produced, viz: T1. T2, T3, T4 and calcitonin.
NDT is available in the uk and some endocrinologist and doctors will prescribe it on a named patient only basis on the NHS. whilst other endocrinologist may prescribe it privately.
NDT was used successfully for over one hundred years and the treatment given for thyroid disorders, prior to the introduction in the 1960's of Big Pharma, Levothyroxine and the blood tests and guidelines.
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