I was wondering if any one had any thoughts on my results
I’m 14 years post RAI and have been on levothyroxine for 8 years and I seem to be very sensitive to dose change. I don’t have thyroid antibodies just a toxic adenoma.
They run my T4 higher around 19- 22 for conversion for T3, my consultant does not prescribe T3.
It all seems to of gone a bit out since February
My energy is bad and I’m also having intermittent low pulse 42-53 during waking hours and low blood glucose under 4
I have a Drs appointment next Monday and I’m wondering what sort of route to take as I’m totally lost as what to do next. I emailed my endo nurses and they said you need to talk to your gp or consultant. I have a thyroid appointment in July. I did try emailing him in February for advice but he didn’t respond.
It is very rare you get a thyroid test a week apart but when I asked the hospital to do a T3 for me they added in a Tsh and T4, I was quite surprised the difference a week makes when I had been on the same dose, it was the same time of day and same hospital lab.
Reference ranges
TSH 0.7 - 4.2. T4 11 - 21.2. T3 - 3.1 - 6.8
Dec. Tsh.3.30 T4 24.5
Change of dose down only one 25mcg a week.
Feb Tsh.4.70. T4 23.5.
April 24th Tsh. 3.04. T4 17.3
May 1st. Tsh 3.42. T4 23.0. T3 4.0
Only one week difference with no change of medication
Current dosage
Mon Friday 100 mcg
Tuesday Wednesday Thursday Saturday Sunday. 75mcg
Thank you so much for reading
Rfc x
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Realfoodieclub
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Optimal nutrients can sometimes improve conversion.
(Many test privately if doctors / labs refuse to test)
Have Folate, ferritin, B12 & Vitamin D been tested recently?
You need to be on consistent dose for at least 6 weeks prior to having test re-taken.
Recommend that blood test is taken under same circumstances. Book early draw eg 08.45. Fast overnight. Delay replacement until after draw. Avoid biotin 3/7 before test. Was this how previous test taken? Variations in times of day ect can contribute to disparities in results.
I am going to talk to gp about the other blood tests, they haven’t been done for a year but have been consistently fine for the last few years.
My dose hadn’t changed when I did the two tests 7 days apart or for a few weeks before hand. Both tests were done exact same time of day and under the same circumstances. I always get my test done at the same time when I can. I wasn’t expecting them to do tsh and t4 for the second test as they had been done the week before it was only the T3 I was looking for. I have been very surprised by the dramatic change of the T4 in a week. The first result was a lot lower than it usually is though.
Was the lab range definitely the same? Ranges can vary between labs machines eg hospital arranged compared to GP arranged, even in same area.
significant alterations is more unusual when on steady dose, it’s something you see more with autoimmune. but there no FT3 to compare so that might / might not have been different.
It was done in the same hospital as all my tests have been and reference range is the same.
My dr and consultant both use the same hospital for testing. My Dr won’t do T3 but the endo nurses from the hospital will do it on request. When my first result came back quite a lot lower than I was expecting I asked for them to do the T3 which was a week later and they did the tsh and t4 again. Is it possible that T3 could cause T4 to jump around so much?
I am wondering if something else adrenal or pituitary might be going on with the intermittent low sugars and low bp because with a T4 of 23.5 I would expect a higher pulse rather a lower one.
In theory the body should preserve FT3 levels, while TSH should react.
Poor conversion shows an issue. When on levo most feel well with TSH about 1. FT4 in top 3rd, FT3 over 50%.
Your TSH is high, because your FT3 is low. It can still be unusual to have high TSH with high FT4.
Decreasing levo can often lower both FT4 & FT3, but not always.
Your FT4 was over range, so dr lowered levo slightly. Less FT4 means TSH will rise. Increase TSH would normally increase T4 from thyroid, with little of no working thyroid that doesn’t happen. TSH also increases conversion so FT3 may rise & FT4 can drop greater that unexpected.
Unfortunately when it come to the pituitary / thyroid they can have ‘minds’ of their own.
In short, yes, Is it possible that fluctuating T3 could cause T4 (& TSH) to jump around too.
I may have read adrenals compensate for low FT3 & there much written about the adrenal thyroid connection. Have you had cortisol tests?
You would expect low heart rate with low thyroid levels, increased heart rate with high. I find heart rate well correlated to thyroid levels. Lower blood glucose with lower levels. My HBa1c reflect this.
Have you posted on thyroid forum before? You have lots of posts so I couldn’t see if you’d had previous advice.
If this is your first thyroid post welcome to forum / or welcome back. 😀
Thank you, I have posted once or twice on here but I used to be the lead admin on the NHS couch to 5km for 6 years hence the waves of posts 😂.
One of my main confusions at the moment is low blood glucose and low pulse, it’s making me feel very wobbly at times. Usually this time of year I’m training for a half marathon but my energy levels are in the gutter. When my T4 goes higher than we (endo and me) like I lower the dose by 25mcg a week and that does the trick. I found the best results by yo-yo ing 25mcg a week every three weeks. My endocrine consultant doesn’t like it but admits it works for me.
The problem at the moment is the symptoms do not match the levels any more especially as my tsh raises and the T4 does not come down. My TSH since radiation therapy has never come down lower than 2.8. It’s like it’s physically impossible for it to do that. When I did get it to 2.8 my T4 was 28 and raising and I felt quite unwell. Sometimes I do wonder if I have a pituitary adenoma as well.
I have never had a cortisol test and it was something I was wondering about. How good are NHS gp’s at doing that test?
Most symptoms are correlated to FT3, an increase in training will deplete FT3.
FT3 hasn’t been closely monitored & it’s quite common for symptoms or improvements to occur after what blood tests levels are showing on a catch up - recovery / damage - delay.
TSH is almost always follows behind what FT4 & FT3 are doing. Doctors tend to focus on TSH. Patients will say FT3 then FT4 are what’s important.
25mcg a week change is an small adjustment, most tolerate 25mcg per day or 12.5mcg, but you know what you tolerate.
“When I did get it to 2.8 (TSH) my T4 was 28” - what was FT3? Likely very low.
Recommended steps:
Test key nutrients. Dr will accept anything in range as “fine” you need optimal levels. Post on here with results & lab range for further advice.
Gaps in testing - Look at arranging your own private blood test for FT4 & FT3 & nutrients. Thyroid UK have a page listing companies with discount codes you can use.
The test can be taken by finger prick sample at home, send off by post and results viewed online.
Options include function (TSH, FT4 & FT3) only or with / without thyroid antibodies. With / without & key nutrients.
Aim is to have FT4 top 3rd of range & optimal nutrients.
You said your endo doesn’t prescribe T3. If you have clinical need they should do. Last FT3 just in range, so likely classed as acceptable. The criteria makes it difficult, but it is possible.
How was your thyroid adenoma confirmed? Presumably your TSH was suppressed when diagnosed? Prolonged suppressed TSH will permanently down regulate TSH level.
Pituitary adenomas will secrete TSH & other hormones.
Anterior pituitary
* Adrenocorticotrophic hormone (ACTH)
* Thyroid-stimulating hormone (TSH)
* Luteinising hormone (LH)
* Follicle-stimulating hormone (FSH)
* Prolactin (PRL)
* Growth hormone (GH)
These will impact other hormones which will exert direct or indirect effects on metabolism, insulin secretion / glucose levels. Cortisol and growth hormone are potent insulin-antagonistic hormones.
GP are often not authorised to test all these & many unable to fully interpret. Something to discuss with endo.
Thank you so much for your detailed answer it will be very useful. I am going to do a bit of research ready for Monday and hopefully me, my Dr and Consultant can all move forward with a plan of action.
It is essential after RAI thyroid ablation that you are dosed and monitored on your Free T3 and Free T4 readings -
and I quote from Professor Antony Toft the leading but now retired endocrinologist who wrote - Thyroid Hormone Replacement - A Counterblast To Guidelines - 2017 :
' I am so concerned about the state of advice on the management of primary hypothyroidism that I am increasingly reluctant to suggest ablative therapy with iodine - 131 or surgery in patients with Graves disease, irrespective of age or number of recurrencies of hyperthyroidism. Treatment with a thionamide, in which the Hypothalamus-Pituitary- Thyroid remains intact, making interpretation of thyroid status simpler, is currently a more attractive proposition.'
So I take this to mean- post RAI thyroid ablation this feedback loop in ' not intact ' and therefore broken - and as the TSH relies on this HPT axis working well - post RAI - we need to track on the actual Free T3 and Free T4 readings.
Sorry I don't understand how to link to the full article - but have popped your name into a post that links you in to the full article.
I do have this link though and suggest that your T3 needs to be at a good level to entertain any exercise as without sufficient T3 your recovery time post exercise will become slower as your body is exhausted and unable to fully recover and it becomes a vicious circle.
No thyroid hormone replacement works well until your core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin d are up and maintained at optimal levels.
Thank you for the reply I will have a read and get some understanding before July and my Endo appointment. My consultant has said that my T3 between 3-3.6 is good and now with it being 4 I suspect he will be even happier so much so they want to sign me off from the hospital in July. I have a feeling they are at a loss what to do with me so are giving me back to my gp. They do not prescribe T3 anyway so it’s all about how high I can tolerate on the T4 for conversion and once it tips over it’s a bit uncomfortable.
At the moment I’m constantly feeling exhausted so I would welcome anything that would help with that.
Well, generally speaking we feel at your best with the T4 up in the top quadrant of its range as this should in theory, convert into a T3 tracking just behind at around 60/70% through its range.
Put another way - once T4 is in the top quadrant- and when on T4 only medication -
the accepted conversion ratio is said to be 1 / 3.50 - 4.50 - T3/T4 - with most people feeling at their best when they come in this little ratio at 4 or under -
so just divide your ' elusive T3 reading/result ' into your T4 reading/result and see where your ratio is - I'm post RAI 2005 and my ratio came in at 5.50 when I first tested - and I've seen other forum members much further out from centre - and way over 6 - when first coming onto the forum and looking for answers.
and we do need the T3 and T4 thyroid hormones balanced - much like having 2 children on a seesaw - in order to work - you need equal weight - so they can respond and support each other.
My brain isn’t working today, hehe I’ve been trying to sort out where I am in the scheme of things and I keep getting strange answers. My T4 is 23 and my T3 is 4, is that a good conversion or a bad conversion?
Look at both the T3 and T4 ranges - they are sliding scales - and follow each other -
As the T4 rises through the range - one would expect the T3 to follow suit and rise through its range - that would be a ' normal ' sequence of events - both T3 and T4 in the ranges and tracking together up the range with T3 tracking slightly behind the T4 :
So you are in the T3 range - but needing a T4 over the range to get a miserable T3 level that is not at a high enough level to allow you to function well.
Taking his stance - he should also be getting your T4 in range - ( by a reduction in T4 medication ) and then he would find your T3 under the range - and then what would he do - logic says - add in some T3 so to balance both thyroid hormones - within the ranges :
especially since this patient has not got a thyroid and lost their own natural thyroid hormone production of both T3 and T4.
So - without the ranges I can' t know the % through the ranges :
Guess estimate - a T4 of 23 is likely just over the top of most ranges and a T3 at 4 is likely just in the bottom of most ranges -
and based on this guess estimate your T3 is not tracking behind the T4 at round 60/70% through its range -
and more likely just at around 25% through its range. showing very poor conversion - and similar to where mine was - and many others who have had RAI thyroid ablation.
So if we look at the conversion ratio and divide your T4 result by your T3 result I'm getting your conversion ratio coming in at 5.75 - showing your conversion way over 4 and the centre point of the conversion ratio.
Optimal ferritin, folate, B12 and vitamin D may help improve your conversion but ultimately you will feel much better having your T3 and T4 levels restored to being well within the ranges by adding in a little T3 to replace that little bit lost when your thyroid became totally burnt through, and rendered disabled in situ - which is the result of having had RAI ablation.
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 - with T3 known to be around 4 times more powerful than T4.
T4 is a pro-hormone and needs to be converted in the body into T3 the active hormone that runs all bodily functions - much like petrol runs a car - and the thyroid is responsible for the full synchronisation of the body - enabling and supporting your physical ability, through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Optimal core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D need to be maintained at optimal levels for any thyroid hormone replacement to work well.
Some people can get by on T4 only - Levothyroxine:
Others find that at some point in time T4 seems not to work as well as it once did - and that by adding in a little T3 - likely at a similar dose to that their thyroid once supported them with - they are able to restore hormonal balance and well being.
Others can't tolerate T4 and need to take T3 only - Liothyronine :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that f the human thyroid gland and derived from pig thyroids, dried and ground down into tablets referred to as grains.
Roll back to 2000 and all these options were readily available from your doctor should T4 - the cheapest option - not restore ones health and well being.
Currently it has become a post code lottery with not even the necessary blood tests being run in primary care to be able to even see / acknowledge / understand that there is a problem and the patient is struggling - and with only anti depressants readily prescribed when you dare to question why you don't feel well - you are left feeling its all in your head and your fault.
If in England, you can go into openprescribing.net and then go into analyse and you can see, how supportive your surgery and / or CCG/ICB area are at prescribing any other treatment options to T4 -
Just pop in Liothyronine as the T3 drug and for Natural Desiccated Thyroid - pop in the leading brand - Armour as the drug.
thank you so much for your answer. I guess I will have to look at other options as my endo consultant has said quite firmly they do not prescribe T3. And that was his conclusion when my levels were lower than they are now.
Well keep reading around until all this makes some sense and you feel more confident in your understanding of everything and if you keep hitting brick walls there is the option of self medicating which I have had to do in order to feel as I can and have my life back, as have many others of this forum.
There is a lot to take in and I'm not suggesting that you jump ship and do it for yourself immediately - but it's an option down the road if things do not improve.
I'm just amazed you have been so active or so long - though RAI is a slow burn and the dose not as exacting as one might think - the idea being with just a small dose - just a small part of the thyroid is disabled and this ' hyper ' state we found ourselves in then adjusted for - but the reality is there is no stopping the progression of this toxic substance and ultimately the full thyroid becomes totally burnt through and disabled in situ.
But we still have Graves Disease as that is an Auto Immune disease but without a thyroid the symptoms not seen as important and in my experience not understood and ignored as there is no cure for Graves - and simply removing the target of the immune system attack - a somewhat simplistic option - as living without a thyroid isn't much fun especially when you haven't easy access to all the treatment options as was the case up to around the turn of the century.
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Any thoughts?
Cause of my hair shedding
Consultant appointment tomorrow 
HI I wondered if anyone had changed their hypothyroid medication from just t3 liothyronine to armour thyroid ?
Needs some help. Any thoughts welcomed
