I would appreciate some help/advice with these results.
I was diagnosed with Graves Disease in October last year and put on 40mg of Carbimazole which caused Cholestatic Jaundice and made me pretty ill. I had a thyroidectomy in December and was put on 150mcg of Levothyroxine after my surgery. My dose has gradually been reduced over the last 6 months and I'm now taking 75mcg, although I feel OK, I'm not entirely sure how to read these results or what they mean and I want to know more about my condition. I'm also taking Selenium, Vitamin D and Vitamin B12 supplements.
Any clarification would be very helpful.
TSH
5.98 mu/L
TSH levels high (normal range 0.27 - 4.2 mU/L)
THYROXINE
16.8 pmol/L
FT4 levels normal (normal range 12 - 22 pmol/L)
TRIODOTHYRONINE
2.9 pmol/L
FT3 levels low (normal range 3.1 - 6.8 pmol/L)
Written by
Helen161
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Basically they mean your dose of Levo is now too low and needs increasing.
TSH (Thyroid Stimulating Hormone ) is a message from the pituitary to the thyroid (or in your case ~ the Doctor ) to ask for more or less thyroid hormones ,T4 and T3( Levo is synthetic T4)
A higher number means 'more please' .. a lower number like 0 means 'we've got enough' .
Free T4 (fT4) is a measure of the available T4 in your blood, which if you have no thyroid tissue left, is now all coming from Levo.
Free T3 (fT3 ) is a measure of the available T3 in your blood , T3 is the 'active' version of T4.
Your TSH is too high and your fT3 is too low.
Increasing your dose of Levo will lower your TSH , and hopefully your T3 ( the important one) will rise.
talk to GP , (say TSH is over range and T3 is under range), ask them to put it back up to 100mcg and then retest after another 6/8 weeks .
There shouldn't be any problem from GP since your TSH is so clearly over range, but if there is show GP the article from GPonline mentioned in this post healthunlocked.com/thyroidu....
welcome to this lovely forum , you've found the right place to learn everything and there will be others along (who are more awake than me) shortly
Thank you so much. It's all been rather bewildering to be honest. Very little was explained to me by my Endocrinologist at the time and sometimes I feel my GP couldn't care less !!
Absolutely essential to regularly retest vitamin D, folate, ferritin and B12 too
Likely low , especially if under medicated as you currently are
What vitamin supplements are you currently taking
ALWAYS test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test
Do you always get same brand levothyroxine at each prescription
Many people find different brands are not interchangeable
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.
My current brand of Levo is Teva and yes I do get the same brand.
I'm currently taking Vitamin D, Selenium which I was told was beneficial for people with Graves and Vitamin B12, all recommend by my consultant before I was discharged from hospital.
The aim of levothyroxine is to be on high enough dose to keep Ft3 at least 50-60% through range. That usually means, if on just levothyroxine, having Ft4 at least 70% through range
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)."
(That’s Ft3 at 58% minimum through range)
You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor
A fully functioning working thyroid would be supporting you on a daily basis with T1. T2. calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg.
T4 - Levothyroxine is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on and is said to be about 4 times more powerful than T4. with the average person needing to be able to convert/ find / utilise around 50 T3 daily, just to function.
You ability to convert the T4 into T3 can be compromised by low vitamins and minerals, so it is essential to maintain your core strength strong with ferritin, folate, B12 and vitamin D at optimal levels.
You may well be in the NHS ranges but some of these ranges are too wide to be sensible and you may need to self source the vitamins and minerals yourself to reach optimal levels for someone who hasn't thyroid and needs to be on top of her health and optimal rather than slide down the slippery pole into further ill heath.
The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological an spiritual well being, your inner central heating system and your metabolism.
Since you haven't a thyroid it is essential that you are dosed and monitored on your T3 and T4 blood test results and to have both these vital hormones balanced within the ranges at around a 1 / 4 ratio - T3 / T4 : and we generally feel at our best when both T3 and T4 are in or towards the top quadrants of said ranges.
Currently your T4 is only just around 48% through the range and your T3 is below range and you must feel pretty awful.
When on any thyroid hormone replacement, the TSH, looked at in isolation is not a reliable measure of anything but it is likely, in primary care, that this might be the only blood test marker run.
So, there is synthetic T3 - Liothyronine, just as there is synthetic T4 - Levothyroxine.
Currently, in primary care your doctor can only prescribe T4 and so you need a referral to an endocrinologist and depending on where you live in the country, you may, or may not, be seen as needing T3 - which is absolutely ridiculous, but this is where we are.
As you will see from the above by not replacing your own thyroid T3 production, you have in effect been down regulated by some 20% of your overall well being.
On another note I'm interested to read about your Graves diagnosis as I too have Graves but was given RAI thyroid ablation back in 2005 and now manage lingering Graves, thyroid eye disease, caused by the RAI, and hypothyroidism.
Graves is an auto immune disease and there can be a genetic link and predisposition for your immune system to have been triggered this attack your body, and Graves can occur through a sudden shock to the system, like a car accident or unexpected death of a loved one.
You might like to read further around Graves from the books and website of Elaine Moore, who too has this AI disease and after her RAI treatment failed to resolve her health issues researched this poorly understood and badly treated AI disease herself and is now a well respected and leading researcher in , amongst others, AI thyroid disease.
Should you go onto the Thyroid UK website, who are the charity who support this forum you will find all things " thyroid " including a list of private companies who can run the appropriate blood tests for you, should your doctor not be able to help you.
Thyroid UK also hold a list of patient to patient recommendations of endos, doctors, and specialists, both NHS and private, who are seen to be more understanding and likely to support introducing other treatment options other than with just monotherapy with T4 - Levothyroxine.
Thank you for this pennyannie, yes I do believe my Graves is genetic. My Aunt was affected with it along with thyroid eye disease. She is no longer with us so I can't even pick her brains about it.I was diagnosed in early September 2020 and put on 40mg of Carbimazole in October. By Mid November I was in hospital with Cholestatic Jaundice caused by Carbimazole, a very rare side effect apparently.
I was in such bad shape that they removed my thyroid two weeks later.
Just interested to know has specialist or GP been in charge of your care? How frequently had you been having blood tests?
I’m wondering what your results have been like and if your doctor has been reducing dose appropriately on what information eg TSH alone or actual thyroid hormones.
You have had good advice to approach GP, test key nutrients and increase dose.
Make sure you get into the habit of obtaining test results to keeping track of your levels.
Find out if your practice offers online access (England is contractually mandated to provide, other areas vary). If available request full access including historical record. If not, always request a copy of your results via reception (don’t ask doctor). Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to and avoid providing just say they are “for your records”. You are legally entitled to them.
Hi PurpleNailsI'm now under the care of my GP. I've had two blood tests since February and both times she was very insistent about cutting my dose but I've never seen any test results at all until I got a test done privately.
I was told by my consultant that I should be having a test every 6 to 8 weeks until my levels were normal but at the moment I can't even get to speak to any one at the surgery. I'm being fobbed off with text messages.
I have an appointment for a blood test next Friday and have given my latest results to my GP and requested an increase in my levothyroxine.
Many are saying appointments & blood tests are being delayed.
They do not seem to be following the specialist advice which or the standard guidance.
They may have previously decreased the doses going by TSH. Now the TSH is too high.
GPs do not always act on private blood test ps or accept them but you can use them to argue your case and they may insist on repeat them, which is planned anyway.
T-S-H is way too high ,you need an increase in thyroxine then a check after 8 weeks to see how you are doing .Are you taking your meds properly ,one hour before food and drink except water ...4 hrs away from vitamins especially iron .Always stick to the same brand of medication . It’s written on the tablet blister pack not the box . I found that Boots were the only chemist that could guarantee the same brand every time . Try not to mix brands either if you need 25s or 50s as well as the 100s
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