I am 39 years old and I was diagnosed with Graves in feb 2022. I was put on ADT . I’m currently on 5mg Carbimazole daily and I take selenium 100 daily. I also take Vitamin b complex.
Until have been on top of my blood regularly but only t4 and tsh was being tested. My Endo has only tested my t3 twice since feb 2022. I’m currently abroad and decided to get my blood work done. To be honest this group has been amazing and very informative and I couldn’t be grateful enough.
My endo will like me to come off ADT in feb once I’m back from holiday.
My t3 levels have come back low and I’m not what it means. Also my gp never tests me t3.
Ferritin 34.95 ng/ml (30 - 400)
T3 56.01 ng/ml ( 84.6 - 201.8)
T4 6.50 ug/dl (5.1 - 14.1)
FT3 2.54 pg/ml ( 2.0 - 4.4)
FT4 1.46 ng/dl (0.93 - 1.7)
TSH 3.79 uIU/ml ( 0.54 - 5.3)
B12 587.4 pg/ml (197 - 771)
VIT d 20.84 ng/ml (30 - 100)
I am waiting for my folate and TSI results to come back.
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Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Hello dude. I'm 45 and was diagnosed with graves in 2015, I've been living with it since then. That you're only on 5mg daily sounds positive, it suggests you don't have that severe a problem.
I've been through the mill with overactive thyroid and the long and short is doctors don't really know what causes it, or how to treat it for the best. I was being advised to have radioactive iodine treatment to help manage the problem but flat out refused. I've been on all sorts of medication to help manage it.
It turns out I solved the problem myself. The main purpose of the thyroidnis to process iodine. You get iodine in certain food, it's actually added to certain food by governments. So I live in the UK, and in the UK they add iodine to dairy products. It just so happened I loved dairy. So when I cut dairy down in my diet massively, my thyroid started performing normally again.
I'm not saying iodine consumption is the only thing to cause an overactive thyroid because it isn't. If you smoke for example, stop. If you'rr stressed in life, address that. But iodine consumption is a key factor, have a look at your diet, calculate how much iodine you are consuming, and you may find there's a solution there somewhere.
Overall listen to your body, and don't trust that doctors or online commentators know it all, because they don't. Good luck dude.
P.S. A lot depends on what country you live in, as different countries add iodine to different foodstuffs. For example in the UK they add it to dairy food, but in the US they add it to salt. Go figure.
Iodine has never been added to milk in the UK as far as I am aware. The reason UK milk used to have quite a bit of iodine in it is that the milk came from cows whose udders were disinfected with iodine before milking. Inevitably the milk got some iodine in it.
But then, iodine was abandoned and some other disinfectant started being used. Hence the iodine content of milk from UK cows is now substantially reduced. And obviously this also affects any product made from the milk.
I don't know why you've come on here to spread misinformation, but you're wrong. The iodine content of milk in the UK is substantial, as any basic research via google tells you.
This article clearly sets out that milk and dairy products are the main source in the UK for iodine:
Even if you go onto the nutritional information for milk as supplied by supermarkets, it clearly states iodine is contained in it, and to quite significant levels too, e.g.:
This isn't hard to research. I don't know why you want to come on here and spread mistruths, but it isn't helpful at all, especially when people are trying to deal with thyroid issues. If you have a solid source disproving that iodine can be found in milk please share that, otherwise please don't spread misinformation.
Well I'm not really sure what your point is and why you made it, it sounded to me like you were saying iodine levels in milk are no longer significant, when that's not the case. You want to argue semantics about it hasn't been added to milk, but it is in milk because of farming processes... Isn't that the same as saying it has been added to milk?
Personally I think there should be greater awareness raised of the amount of iodine "added" to dairy products in the UK, especially for those diagnosed with thyroid problems. I saw consultants for 8 years, and not a single one mentioned this as a point of interest, when surely it has relevancy. They wanted to give me radioactive treatment to "solve" the problem instead. Something is wrong somewhere.
I think the issue about whether it is purposely added, arrives due to teat disinfectant, or is from their diet is significant.
One reason is that when organic milk starred to become widely available, the iodine content of the milk was low - lower than non-organic. The farmers did something (not sure what, but clearly some change to diet) and raised the iodine content to similar or slightly more than non-organic. But they did not take the route of adding iodine. Which would probably have lost them organic status!
It might also have pushed the hands of the milk substitute makers to incorporate iodine because it would have been obvious to everyone.
That's interesting because I made a switch to organic milk when I cut down on dairy, assuming it has a lower iodine content than normal milk. It is difficult a lot of the time to know how much iodine is in different products, this should be made much clearer. Some products that contain iodine don't even declare that on the packaging sometimes.
If iodine is an ingredient in its own right, it certainly should be declared. And I know I have seen "iodised salt" as an ingredient in a number of prepared foods.
But for things like seaweed products it might not be obvious.
Ironically, laverbread contains some but a relatively low level of iodine.
I'm not sure there is a legal requirement to list iodine in the UK, as it is a fairly obscure mineral, rather than being a main ingredient. I've certainly bought milk before that doesn't list iodine, but which likely had it in. I don't know for sure about that though, I'm no expect on the laws in the UK around ingredient lists.
The requirements have become more stringent, if anything. Especially given the issues of undeclared allergens and the deaths they have caused.
One example (which changed a few years ago), is flour. Which must declare all ingredients, including the tiny quantities of ingredients which are demanded by law. Not just on packs of flour (as listed below), but in everything which contains flour as an ingredient - however small an amount of flour is involved.
Carbimazole is an Anti Thyroid drug and semi-blocks your own natural thyroid hormone production of T3 and T4. so by reducing the AT drug you will be lowering its effect and increasing your T3 and T4 natural daily thyroid hormone production.
What were your T3 and T4 readings / ranges at diagnosis and what antibodies were found positive and over range in your blood - antibodies are generally written as either or - TPO -Tgab - TSI - Trab - do you have any readings / ranges or any of these thyroid antibodies ?
Graves is an Auto Immune Disease - there is no cure and something has triggered your immune system to turn and attack your body rather than defend it - and that's the 64 million $ question and probably you are the only one who may know this has happened to you.
Graves is considered like threatening if not medicated with an Anti Thyroid drug - such as Carbimazole - and just ' buys you time ' like a planes waiting for a landing slot - while we wait for your immune system response to calm down and hopefully your thyroid reset itself.
When metabolism runs too fast - and you have high and above range T3 / T4 levels as in hyperthyroid or running too slow as in hypothyroid when you will have too a low a level of T3 and T4 - the body struggles to extract key nutrients through food, no matter how well and clean you eat - and without a strong core strength of ferritin, folate, B12 and vitamin D your health issues are further, unnecessarily compounded.
As a woman - I now aim to maintain my ferritin at around 100 - folate around 20- active B12 75 ++ ( serum B12 500++ ) and vitamin D at around 100.
Graves is a poorly understood and badly treated auto immune disease - everyone's journey with Graves is different and unique to them but stress and anxiety seem to be common factors.
I've now ' pinged ' HenriC to come back to your question - by typing in as now highlighted in blue - once you start typing @ and the first couple of letters the computer gives you named options to complete the ' ping ' -
Does that make sense - I'm well past my best before '' time of day ' !!
Seems like your stats are in the right range as of Nov, which maybe indicates that carbimazole 5mg has worked. You can calculate how much iodine you are consuming in your normal diet, iodine levels by food in the uk is available by googling it. I was consuming a lot of dairy, like 3+ cups of milky coffee per day, cereal with lots of milk(milk is one of the biggest problems imo), several eggs, greek yougurt and lots of cheese. I calculated I was consuming 3x the recommended daily intake of iodine through dairy, the RDI of iodone is around 150 micrograms according to the NHS, I was consuming 3x that. No wonder then I had issues with my thyroid, whose only function is to process iodine. Also I found the book "Thyroid reset diet" by Christianson useful too, though that deals with underactive thyroid issues mostly I think a lot in there can be relevant for overactive thyroid too.
You seem to have a mild case though, so probably don't need to make too radical changes. Good luck.
I’m also confused why the GP does not test for T3 regularly.
My endo has recommended that I come off ADT once back from holiday but I am worried I mite relapse. I still have antibodies I got my TSH Anyibody receptor checked while abroad it came back 4.4 (Range: <2.5) I will be getting my TRAb test once back.
You need to make sure when you reply to someone that you press their reply button and their name comes up in the reply as they then get a message saying they have a message waiting :
I was coming back on to amend / edit my post to you and found these messages :
The AT drug blocks own thyroid hormone production and should be titrated down as your T3 and T4 start falling otherwise you risk becoming hypothyroid with your T3 and T4 too low in the ranges and you experiencing the equally disabling symptoms of hypothyroidism.
With a TSH over 2 - you are now drifting into hypothyroidism and need to titrate down the AT drug a little-
Thyroid UK - the charity who supports this forum have a page on their website detailing both hyper and hypo symptoms - maybe take a look and print out the symptoms - as it is not clear cut and some symptoms sit in both camps - thyroiduk.org
OK - so obviously if your TRab are still over range it is pointless talking about coming off the AT drug - the trouble is the NHS rarely tests the antibodies more than once - I know - stupid- isn't it ?
and the NHS generally allocate around just a 15-18 month treatment window with the AT drug - as the NHS is target focused and encouraged to reduce O/P waiting list times -
and should you fail to find remission - and made to feel like a failure the conversation then becomes one of definitive treatment - RAI thyroid ablation or a thyroidectomy and a discharge out to primary care- where as you already are aware your doctor can't run the correct blood tests - I know - it's crazy.
Whereas if you read the research paper I sent you - you will see that the longer the patient stays on the AT drug the better the longer term outcome becomes for the patient.
I maintain my core strength and buy A grade vitamins and minerals after building up my core strength from very low levels after becoming very unwell some years post RAI thyroid ablation for Graves Disease back in 2005 - when I knew nothing and did what I was advised by mainstream medical.
Details on my profile page - just press the icon alongside my name and you should be taken to all I've ever written on this patient to patient forum - I don't wish to rewrite my trauma here -
Same applies to anybody else you may wish to read about - and if you get lost reading around - just press your Profile icon - top right on my laptop or bottom left, I think, if using a phone.
Ok - so I think you have confirmation of Graves Disease there with the TSH Receptor Antibody reading being over range at 4.04 as the ' cut off ' is 1.75.
We work from the Free T3 and Free T4 readings as these are what are available and circulating in your blood stream.
Did you reduce down your dose of the AT drug and allow more of your own daily thyroid hormone production to be released into your blood stream to help support your body ?
There are no dates on these blood tests and do not know if in chronological order -
Your TSH 'looks ' higher than previously and your T3 at 2.25% in the range with your T4 at around 69% :
Just for reference - In a normal, well functioning thyroid - the TSH would be around 1.5/7 with a Free T3 tracking slightly behind the Free T4 - by around 10/15% -
but with AI disease attacking and driving up and down your thyroid hormones the T3 and T4 levels can jump around - and why the AT drug is prescribed to try and mitigate the worst of the symptoms experienced by semi blocking your thyroid production while we wait for your immune system response to calm down.
Your Thyroid Receptor levels have dropped - and hopefully this first phase of Graves is coming to an end -
Your TSH has risen suggesting you need more thyroid hormones and your T3 and T4 are now in the ranges - but not at an optimal level and a small reduction in the AT drug to allow a little more T3 and T4 into your blood stream the next step as suggested in a previous reply.
It's somewhat confusing making direct, simple comparisons as some of your blood tests look to be from different assay measures and presumably different laboratories - and likely at different times - but suffice to say - you now look to be dealing with hypothyroidism symptoms -
How are you feeling - it can be a bit of a roller coaster of symptoms ?
I didn't pick up on an earlier post re vitamins and minerals as you didn't actually reply to me - but see SDragon has already picked up on these core strength vitamins and minerals and extensively covered these co-factors.
Sorry to sound dumb but I’m not sure what I should reduce ADT down to since I’m only on 5mg carb.
I had hypo last year when my TSH went up to 12. Was really annoyed because I couldn’t understand what was going on and my Endo said nothing to do with my thyroid. He never told me the symptoms I was experiencing was due to hypo as I was over medicated and he just reduced my ADT.
Also is it ok drink lemon balm tea. It’s says online that you shouldn’t drink it if you have thyroid issues.
I’ve just started taking magnesium glycanite at night, vitamin D in the morning. I wanted to ask what is the best time to take ADT and vitamins and how far apart I should take them? I’ve stopped selenium and started eating Brazil nuts.
You will have hypo symptoms with a TSH over 3 let alone a TSH of 12 :
Buy a pill cutter or use a sharp knife a chop the AT drug into 2 -
alternatively if that isn't possible try taking the 5 mcg dose of the AT medication every other day.
I used to take my Carbimazole first thing in the morning and suggest you take vitamins and minerals some 4 hours away from these drugs - I take mine after my main meal that contains most protein.
When your TSH was at 12 - your endo was saying and meaning that you were over medicated on the medication - the Carbimazole - and why he reduced your dose of this Anti Thyroid drug - and this should have resulted in a lower TSH -
Can you see that this happened - have you a blood test post this dose reduction that the endo initiated - there are no dates above and I can't find the natural order of events.
If you dip into Elaine Moore - elaine-moore.com - as previously detailed - there is a section on holistic and alternative treatment options where you can read around all supplements and suggestions - and I think I remember lemon balm being recommended :
My endo has now recommended that I stop carb. He hasn’t tested my trab. And if my levels go back to hyper then he has recommended radio iodine or Tyroid removal which I’m not to keen on either.
The earlier results I sent were done on the 04/01/24.
My endo has now recommended that I stop carb. He hasn’t tested my trab. And if my levels go back to hyper then he has recommended radio iodine or Tyroid removal which I’m not to keen on either.
The earlier results I sent were done on the 04/01/24.
So - the most current results here seem to be from November 2023 -
Your TSH is 2.15 and the T4 is at 20.10 - ( range of 10.50-24.50 ) - so around 71% through the range :
Please check the above as being correct and advise if I'm wrong as I find it difficult reading these small phone messages.
So, you are currently abroad and I guess the next question is do you plan on completing your treatment - here or there - as guidelines are different, country to country -
Japan would not be suggesting your loosing your thyroid for an AI disease -
Alternative, more holistic and integrated doctors would probably agree -
I believe I've already sent you the most recent research papers and the treatment regime generally followed by the NHS.
OK - so if still with over range and positive Graves antibodies it seems pointless to come off the AT drug :
The NHS tends to only run the antibody once - at diagnosis - and then when patients do not ' find remission ' in the 15-18 month window - tend to make the patient feel like a failure when this short phase of AT drugs is stopped :
Some patients are offered a treatment option called Block & Replace - where your AT drug is increased to fully Block your T3 and T4 production BUT a measured dose of T4 is prescribed to Replace some your T3 and T4 do you not fall too far through ranges and become hypothyroid and suffer the equally, or in fact, worse symptoms of hypothyroidism.
Play for time - and I believe if push comes to shove - the cleanest and safest long term definitive treatment is that of a thyroidectomy - though fully appreciate it feels like being between a rock and a hard place -
any invasive surgery carries a risk just as taking down a toxic substance that we now have negative evidence on does - though have to say when I was very ill with the consequences of I believe from RAI ingestion - my thoughts and symptoms all totally dismissed and denied by the NHS.
OK - well blood tests tend to run behind symptoms being experienced by a couple of weeks -
Your symptoms reads as more hypo than hyper - did you find the list of symptoms of both over and under active thyroid on the Thyroid UK website - thyroiduk.org ?
Graves is a stress and anxiety driven Auto Immune disease :
Too low a T3 for you = hypothyroidism just as too high a level of T3 for you = hyperthyroidism -
Maybe once home - adjust the AT drug and try and monitor your symptoms -
Graves is said to be life threatening if not medicated so hopefully you'll not be kept waiting too long before being picked up by the NHS.
When I started self medicating with thyroid hormone replacement after RAI thyroid ablation for Graves - I monitored my blood pressure, pulse and temperature twice daily - and plotted these changes as my symptoms pf hypothyroidism were alleviated and it just helped me in my understanding of my body and proof of improvement when dealing with so many symptoms.
You are coming from a different direction as just adjusting down the AT drug - so symptom relief maybe quite subtle initially as the AT drug build up in your body reduces - so just go slow and you have the option of returning to 5 mcg daily if you experience anything untoward.
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