“My diagnosis is Thyrotoxicosis - Hyperthyroidism”
Hyperthyroidism is a symptom not a diagnosis. Something is causing excess levels. You deserve to know what. Most common cause of continuous hyperthyroidism is Graves an autoimmune condition.
There are other causes of hyper. Including transient hyperthyroidism. There is also toxic nodules.
Knowing the cause is important as other tests may be needed and other factors need to be taken into account when monitoring you.
Graves has potential to remits & relapses, whereas nodules do not. Usually definitive treatments are suggested after 18 months of carbimazole. Dr dislike patients on it long term. Has a specialist ever managed your treatment?
Have all the options been explained & discussed with you? (I write as someone who has has opted to remain on carbimazole long term)
“I have never been tested for anything else other than TSH & T4.”
This is quite shocking. FT3 is the active thyroid hormone. It may have been low or disproportionately high all this time. If FT3 has not been tested accurate information on treatment adjustments can not be made.
Ask doctor for full thyroid test including TSH FT4 & FT3 tested at same time. Ask for thyroid antibodies. TPO, TG. As hyper TRAb & or TSI antibodies need to be tested
GP can request TPO & TG a specialist endocrinologist can arrange TRab / TSI.
Also important to test folate, ferritin, B12 & vitamin D.
If GP can’t test there are private blood testing companies as an option. Fingerprick test done at home.
The TSH is a pituitary hormone which signals thyroid to decrease / increase production on new hormone. When FT4 & FT3 high the TSH drops low. The reverse happens when FT4 & FT3 low - The TSH rises to signal the thyroid to increase.
Most healthy individuals have a TSH around 1. but you would expect to see FT4 & FT3 within range. The TSH can be extremely unreliable & an inaccurate reflection of levels. FT4 is usually higher in percentage than FT3 - eg FT4 70% range & FT3 55% of range.
Please add ranges to results. Ranges vary between labs.
By most ranges TSH high & FT4 low under many ranges. You may be feeling hypo symptoms, but the body tends to prioritise preserving FT3 level & yours may be ok & not as low.
Thank you so much for all this information and to be honest, it's totally over my head. You jogged my memory on my diagnosis. Back in 2011, I had a scan, and this highlighted I had nodules on my thyroid. I have seen a specialist twice, but wasn't really given many options other than as I tolerated carbinmazole very well I could keep taking it indefinitely also there was an option for surgery to remove the gland if I preferred. I'm quite content on the medication but like I said initially this is the first time I've had mixed level results.I will certainly look into a private test . Again,thank you so much for all the amazing information. It is very much appreciated. x
When you test, arrange sample draw early in morning, fasting overnight, drink lots of water. Stop any supplement containing biotin for 3 days. Biotin has potential to interfere with results.
Link for private tests companies & discount codes.
Order online, kit includes means for finger prick sample, (or extra fee for venous draw) post sample back (avoid weekends, likely postal delays ) result available to view online usually quite quickly.
Medichecks thyroid advanced a good option.
I have a solitary toxic nodule. Which was confirmed by a thyroid uptake scan. Ultrasounds can detect nodules but not how they function.
I was offered radioactive iodine early on, which I opted to delay (indefinitely). An ENT surgeon has said they would operate. In theory nodules can also be treated by Radio-frequency ablation, which is less invasive, Unfortunately this limited to 1 or 2 hospitals in UK & therefore not routinely offered - but I hope it becomes more widely available.
Just to clarify. Your levels are currently hypothyroid. TSH rises with hypothyroidism as thyroid levels (FT4 & FT3) lower. They have an inverse relationship.
The opposite occurs with hyper - the TSH lowers as thyroid levels increase.
If TSH & FT4 & FT3 were all low this would be a conflict of expected norm, but does occur for many reason.
The TSH should respond to thyroid levels,but it can take several weeks, even a healthy individual for the TSH to catch up.
If you even had hyperthyroid levels especially for a prolonged period in the past if can permanently lower or down regulate the TSH response. Which means your levels in another person may show as a significantly higher TSH. In short the TSH isn’t reliable you need FT4 & FT3 tested.
Hi, here is my latest update on my current results.Following on from my previous blood results :
8th Feb 2024 TSH 4.28 T4 7.
My GP reduced my carbinmazole to 10mg daily. 13th Feb 2024
Blood test results
4th April 2024
TSH 0.63 TSH 11.9
Repeat blood tests due 3 months time.
My question is considering my levels have dropped so rapidly in this short space of time, I'm concerned that with a further 3 months gap on the same dose should I ask my GP to increase it now .
The Anti Thyroid ' blocks ' your own natural thyroid hormone production :
Do you have the ranges that the T4 should be maintained in ?
Going on the TSH - your February reading of 4.28 is too high and signalling your body needing more thyroid hormones to function well as you risk dealing with the equally disabling symptoms of hypothyroidism -
and your doctor reduced your dose of the blocking AT drug -allowing more of your own natural thyroid hormone production to be released - which makes sense -
In April we see that your TSH has reduced - as we would expect - though still in the range - and that your T4 has recovered a little and increased as one would expect - but without a T4 range it's difficult to say much more.
When metabolism is running too fast as in hyperthyroid, or too slow as in hypothyroid the body struggles to extract key nutrients through food no matter how well and clean you eat - and if ferritin, folate, B12 and vitamin D are not maintained at optimal levels this alone can unnecessarily compromise your health issues further.
The AT drug is used to try and minimise the worst of the symptoms being tolerated -and leave you - neither hyper nor hypo - and it can be difficult assessing the situation as blood tests tend to run a few weeks behind symptoms being experienced, and without a Free T3 blood test run at the same time as the Free T4 blood test result it's difficult to say, where in the relevant ranges your Free T3 needs to sit for you feel as well as you can.
I feel quite good at the moment but I have always noticed that when my TSH is just within the normal range that this usually works for me. Obviously when it becomes undetectable I suffer the classic symptoms of being hyper and that usually takes a good few months to creep up to a detectable reading. When the TSH was 4.8 I was suffering with extreme exhaustion, slow heart rate with palpitations, puffy face and generally felt unwell with lottle or no interest in anything.
Well those symptoms described last read very much like hypo symptoms -
It seems you are being dosed more on a TSH reading than anything else - and without the T4 range it's difficult to know where your unique T4 level needs to be in conjunction of course with the all important T3 level as it is T3 the active hormone that runs the body much like the fuel that runs a car.
T4 converts in the body into T3 and we generally feel best when our T3 is around midway through it's range - tracking just behind the T4 reading in percentage terms.
T3 and T4 tend to be a sliding range - smost people on here range their own blood tests as they are unable to get a full thyroid panel on the NHS - and the Medichecks range we see on here often is with a T4 range of 12 .00 - 22.00 with the T3 range of 3.10 - 6.80 - and so the relationship, and the body's conversion, of T4 into T3 is around a 1/4 ratio T3/T4 ;
Generally speaking once the TSH is over 2 you will be starting to experience hypo type symptoms and years ago in the UK the NHS started treatment for hypothyroidism when the TSH reached 3 - though now in the UK the guidelines state the TSH needing to reach over 10 on two different blood tests months apart !!
Thyroid Uk - the charity who supports this forum - thyroiduk.org - have a very complete list of both hyper and hypo symptoms - maybe it will help you understand where you are on this seesaw of symptoms caused from these ' firing ' nodules you are living with.
My GP works only with the NHS across the board ranges of TSH & T4. and Ive been told that testing for T3 is not available as its inconsistent also unnecessary. Sorry if I'm being a bit dumb but I really struggle to understand this. So the latest blood results of TSH 0.63 T4 11.9 doesn't actually mean anything unless I know what my personal range of T4 should be?? And to get my personal range I need to be tested for T3 as well?
Maccao ~ we are asking about the lab reference range for your fT4 result, ( not what your personal range should be )
because NHS fT4 ranges differ from lab to lab .... some common examples are [7.9-14] or [12-22] but there are several others , it depends what machinery the lab have.
the reference range is usually shown with the results like this eg fT4 13.5 [12-22] if it's not shown with your results , you may have to ask at reception for a printout of results to find out what it is .
Results can only be interpreted with the reference range that was used for the test .
There will always be a blood test range with any blood test report and prior to the ' science of the blood test ' - your doctor would have asked you ' How are you feeling ' and adjusted the medication on physical symptoms.
Now we have the blood tests and ranges it seems to me if the computer doesn't flag anything up as ' being out of the range ' - whatever your symptoms tend to be - nothing is asked or discussed as you are seen as ok and good to go.
There is a great deal of difference between being at the bottom of a range, to being mid way and to being at the top - but it seems that if we fall in the range somewhere - there is no fine tuning of where we need to be in the range to be at our best and well.
A T4 of 11.90 does not mean much without knowing the range used for testing the T4
- and quite where your T4 needs to be within this range to give you optimal health is the fine tuning of the medicine being prescribed.
The TSH is a pretty constant range but the T3 and T4 will vary depending on the machinery used at the laboratory :
If you have online access to your medical records held at your surgery - maybe you can see them on there - alternatively search for where your blood tests were run and look for the ranges for thyroid function testing at the NHS laboratory used by your surgery if it was your surgery who arranged and took your bloods.
Ok - so your TSH is at .063 in a range of 0.30 - 5.00
and your T4 is at 11.70 in a range of 7.90-16.00 so at around 47% through the range.
So if the same lab were used previously your T4 was then at just 7 and at the bottom of its range - and much too low and why your TSH shot up to 4.28 :
Thanks again. Im just concerned my levels changed considerably in a space of 6 weeks .There's nothing I can do really other that keep taking the 10mg dose and hopefully things stay within the required levels. If my symptoms change severely before the 3 month time frame I'll contact my GP.
Well yes of course - but I guess if you start feeling more hypo than hyper you could reduce your dose yourself of the AT drug - and conversely if you feel yourself becoming hyper - increase the AT drug accordingly -
Is your 10 mcg dose 2 x 5 mcg - as they could be chopped into 2.50 mcg smaller adjustment doses ?
It's difficult as I said before the blood tests tend to run a couple of weeks behind symptoms being tolerated and with nodules I'm not sure if you have any control of their volatility.
Honestly your help,information and guidance is above and beyond. The GP's never really explain things I suspect because they can't be experts in everything. I have suggested a 12 .5 dose in the past and on this dose things became more settled. That stopped when I seen a consultant when my GP was on maternity leave and he lowered the dose .I've had problems ever since with rollercoaster results. I'll suggest it again to the GP. Many Thanks again.
with a metabolism ' jumping around ' and ' not settled or sitting quite right for you ' -
the body will struggle to extract key nutrients through your food no matter how well and clean you eat - so please try and get your ferritin, folate, B12 and vitamin D blood test run.
Some NHS ranges are too wide to even be sensible and we can also advise where these core strength vitamins and minerals need to be for optimal , overall , health and well being.
I've had ferritin checked in Feb and that was normal. My GP does a full blood count a few times during the year but I don't know exactly what that includes. I take B12 vitamins daily so hopefully that helps. They tell me my thyroid is "firey"
I just get fed up with it being up & down . This is over 9 mths
I would imagine if you look back through your medical records you will be able to find the results and ranges of whatever blood tests have been run.
The NHS range for ferritin is something like 25 - 200 - so your result is in the range somewhere - optimal would be around 100 - that's what I aim for :
Are you vegan and why you are supplementing B12 ?
Depending on your blood test result - you might be better off taking a B -Complex as supplementing B12 also needs us to support all the other B vitamins including folate :
I now aim to maintain active B12 at around 125 and if serum B12 run instead aim for around 500++
I will look at my test results to see what I can discover. I taken B complex for years buy I was informed they were a bladder irritant so I stopped. I honestly don't know why I take B12 😊
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