Would it be possible for some clarification on some test results. The more I read about the thyroid the more complex it appears to me. Different GPS give different advice and trying to see 1 consistent GP is so difficult.
During 2021 I lost over 3 stone in 9 moths I was unable to see GP face to face but when I eventually got to see one I asked if it was my thyroid and she asked me to put my hands out and as they weren’t shaking she said she doubts it but would do blood test. This came back as hyperthyroidism and I was put on 20mg of carbimazole which worked for several months then dosage was reduced after new bloods taken over several months then told I was hypo. GP liaised with endocrinologist who advised to stop all meds. I took nothing for 5 weeks had more bloods taken then was put on propylthiouracil 50mgs daily. I now believe that I’ve gone hypo again. I’m due more bloods at the end of the month. It appears I am flipping between hyper & hypo!! Is this possible? I just want to feel well again.
These are what I’ve had printed off at GPs as march results. Not sure if I’m giving right information as all looks complex to me. Waiting to see Endocrinologist but appoint not until end of August😌
.i'll start by explaining how to read these latest results :(i've removed the bit's you don't need)
TSH level <0.05 [0.27-4.2]
TSH (Thyroid Stimulating Hormone) is a signal from your pituitary to your thyroid asking it to produce more ,or less thyroid hormones (T4 and T3).... a higher number means 'make more please' , and 0 means 'stop making any more , we've got too much'
Yours is effectively '0' (< 0.05 means the test can't measure any lower)
This is because you have too much T4 and T3.
Free T4 level 19.1 [12-22] .... T4 is the inactive /storage /transport form of thyroid hormone made by the thyroid and yours is quite high ('normal' range goes from 12 to 22)
Free triiodothyronine level 19.1 [3.1-6.8] ....Triiodothyronine is T3. this is the 'active' form of thyroid hormone ... yours is very high .. and this is what causes the symptoms of hyperthyroidism (the 'normal range is 3.1 to 6.8)
TSH receptor antibody level > 40 [<1.75] .....this is a very high (positive) result because it's more than (> ) 40 ( the 'normal range is less than (<) 1.75)
'TSH receptor antibody' = 'TSH-R antibodies' ( these are different ways of writing the same thing ... Thyroid Stimulating Hormone Receptor antibodies , usually written as TRab
TRAb assay detects both TSH-R stimulating and blocking antibodies .. don't worry about that bit, it's complicated and you don't need to understand at the moment )
TRAb< 1.75 IU/L negative
TRAb > 1.75 IU/L positive ....this bit is just explaining the 'range'
Your positive TRab result (>40) means the cause for your hyperthyroidism is Graves disease . These antibodies act on the thyroid in the same way as TSH (Thyroid Stimulating Hormone) and they are causing your thyroid to make more T4 and T3 than you need.
You were given the 'antithyroid drug' carbimazole to stop your thyroid being able to make as much T4 and T3 ( Doctors can't do anything about the antibodies ..so they have to stop the thyroid working instead) The higher the dose of Carbimazole the less T4/T3 can be made , and when you lower the dose of carbimazole the thyroid is able to make a bit more T4/T3 again.
So they give you carbimazole and hope the antibodies will go down by themselves, and in the meantime they adjust the dose of carbimazole to lower your T4 /T3 into normal range , but not too much that your T4 /T3 go so low you become hypothyroid.
If your T4/T3 go too low they lower the dose of carbimazole .. if they go to high they increase the dose of carbimazole .
propylthy ..thingy is also called PTU , it's a different form of antithyroid drug , they give it to people who carbimazole didn't suit, but it works in exactly the same way ,
So the whole thing is a balancing act:
your TRab are making your thyroid make too much T4/T3 ..
the levels of TRab will change ..more TRab = more T4/T3 , less TRab =less T4/T3.
Doctors are trying to balance what's going on with antithyroid drugs:
higher dose = less T4/T3 can be made
lower dose = more T4/T3 can be made
When you get your next blood test , they will be able to see what effect the 50mcg PTU has had , and the dose of PTU may then have to be adjusted.
" I was put on 20mg of carbimazole which worked for several months then dosage was reduced after new bloods taken over several months then told I was hypo. GP liaised with endocrinologist who advised to stop all meds. I took nothing for 5 weeks had more bloods taken then was put on propylthiouracil 50mgs daily. I now believe that I’ve gone hypo again. I’m due more bloods at the end of the month. It appears I am flipping between hyper & hypo!! Is this possible? "
The carbimzole lowered the T4/T3 it stayed stable so they try to reduce dose a little to see if you will remain stable on a lower dose with a view to eventually stopping it totally and seeing if you will be ok without any . ( but this will only work if your TRab have gone down a lot ... while TRab are very high you won't stay stable without some carbimazole)
They found a lower dose than 20 was still lowering your T4 and T3 too much (making you hypo) ..so they tried stopping it ... but T4/T3 rose again. (because you TRab are still high )
I don't know why they decided to change to PTU, did the GP explain why? .... but whatever, now they have to try to find the right dose of PTU to keep your T4/T3 under control ( not too much , or you will go 'hypo' , and not too little , or you will go 'hyper' )
It was probably a bit too soon to take you off all antithyroid drugs , and you probably just needed to stay on a tiny dose of carbimazole (or ptu)~ smaller than the last dose you were on .
Thank you so much TattybogleFinally I have a explanation of what is going on. As I said it seems so complex & when GP gives you limited information to try and grasp what is going on with yourself it’s hard to comprehend.
I am due to speak with GP today and from reading info on this community I will be asking for vitamins to all be checked to see if that will help me feel any better.
The type of thyroid issue you have is Hyperthyroidism ~too much thyroid hormone being produced by thyroid , making you feel shit and loose weight and you heart and everything else go too fast and leaving you exhausted ...etc
There are several possible causes of Hyperthyroidism , but the cause of yours is Graves disease.. which is where your immune system get's confused and produces these (TRab ) antibodies that mimic TSH , and they make your thyroid keep producing more T4/T3 even though your 'real' TSH is 0 .
The other causes of hyperthyroidism are things like 'hot' nodules that grew on your thyroid that work by themselves and produce T4/T3 independently to the thyroid,
other causes are 'drug induced' or viral induced or 'transient' thyroiditis .. but these would not have high TRab .. it's the TRab that show you have Graves .
There is no actual treatment for the TRab.
If and when they go down and stay down, you can go into remission from Graves ., and T4 /T3 levels will hopefully stay ok with no treatment, but while they are high your thyroid will produce too much T4/T3 and will need to be controlled in some way.
The endocrinology dept. will try and persuade you to have your thyroid disabled permanently by RAI (radioactive iodine) or removal by surgery , if your Graves doesn't go into remission after approx 18 months on antithyroid drugs... but if you get to that point you should do your own thorough research by asking on here before you accept these are your only options .
There is a third option which is to stay on low dose antithyroid drugs for longer, if you feel well and are stable on them .. but they will prefer to get you off their books as soon as they can (and RAI /surgery will do that, you will nearly always become Hypothyroid and need to be on Levothyroxine for life to provide your T4/T3 .. but this is much cheaper for the NHS than you are now ,because you are then monitored once a year by a GP rather than needing endocrinology appointments )
Levo is fine for a lot of people but a significant minority do not do so well on it ( and end on this forum trying to figure out how to feel better) ... but the endo is unlikely to tell you about this possibility when they are discussing what your options are going forward.
Graves is an auto immune disease that tends to attack the thyroid and eyes.
There is likely a genetic predisposition to Graves with somebody maybe a generation away from you with a thyroid health issue, and it can be triggered by a sudden shock to the system, like a car accident or unexpected death of a loved one.
The thyroid is a major gland and the controller of all your bodily functions including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
Graves has 2 unique antibodies, TSI ( a thyroid stimulating ) and TR ab ( a thyroid receptor blocking ) - so basically, one acts as a driver and the other acts as a brake and at any one time, either one can be controlling your thyroid hormone production and there is also a "middle ground" where these 2 extremes vie for control, offset each other, and you my feel relatively well.
There is no cure for Graves and mainstream medical have no answers on how to control the antibodies and during this first phase of the disease an Anti Thyroid Drug, either Carbimazole or Proplythiouracil is prescribed to block your thyroid hormones rising any further as if left untreated, Graves is aid to be life threatening.
After initial diagnosis of the Graves antibodies being over range and positive, and antibodies are generally not tracked again, and a 15-18 month window is suggested as the time frame to be treated with an AT drug with the thinking being that during this first phase of the disease your Graves may calm down and ' remission ' be found without taking any medication.
What symptoms were you initially dealing with and have they been resolved by taking the AT drug ?
As already detailed too high a level of the AT drug and you may find your T3 and T4 thyroid readings too low for you and you may start experiencing hypothyroidism, which can be equally disabling.
Just as too low a level of the AT drug and you may find your T3 and T4 thyroid readings too high for you may start experiencing hyperthyroid type symptoms.
In effect using the AT drug is like putting you on auto pilot as it is used to block and control your T3 and T4 levels and meant to keep you on an even keel as the Graves antibodies rage between themselves and hopefully burn themselves out..
When metabolism is running too fast or too slow there is the added issue of you keeping your core strength strong and solid which is generally done through being able to extract your essential nutrients through your food.
So it will be in your best interests to ask for your ferritin, folate, B12 and vitamin D levels to be run as these need to be maintained at optimal levels throughout any thyroid health issue, and we can advise on these results if you start a new post with the results and ranges.
Can I just ask - is your T3 result correct at 19.10- the same as your T4 result and just a coincidence ?
Should you wish to read further around Graves Disease the most well rounded research I found was that of Elaine Moore and she has written several books and has a World wide following on her Graves Disease Foundation website, which is Stateside.
Thyroid UK who are the charity who support this forum is another very useful website where you find all things thyroid - and if confused by what is a hypo or hyper symptom there is a page dedicated to just this and yes, it does get confusing as symptoms of both can cross over, and no two of us are the same.
I have Graves and had RAI thyroid ablation back in 2005, a treatment I deeply regret, and now manage lingering Graves, thyroid eye disease and hypothyroidism and am self medicating with full spectrum thyroid hormone replacement which currently the NHS do not readily prescribe.
I am listing below 2 research papers you might like to put under your pillow :
I'm a bit previous, but just for reference, when and if needed :
Thank you so much PennyAnnie & Tattybogle for all the information. It sure is confusing. Yes it does appear that both test results are 19.1
I will look at some of the research you’ve suggested looking at and let you know my next blood results which I’m due to have on the 28th of this month. I will be asking GP for my victims to be tested at this time too.
Some of my initial symptoms were 3 stone weight loss but unable to see doc due to lockdown. Eventually saw one and had bloods tested and then put on carbimazole 20mg. After a few months felt a lot better as was extremely fatigued and loss of muscle mass, heart rate would wake me up beating at 130 bpm. This settled over the next few months then was reduced to 15mgs at next blood test was reduced again to 10mgs then down to 5 mgs heart rate then fell to 54 bpm then they stopped medication altogether for 5-6 weeks then went hypo then put on PTU a few weeks ago. Heart rate increased but is now on a downward trend again. It’s just all so exhausting.
I don’t know why they took me off the carbimazole I just got a phone call from GP who said advised by Endocrinologist. I don’t get to see Endo until end of August!!
I will definitely not be pushed into having my thyroid removed and will continue as I am for now but thanks for heads-up on that.
Once again thank you both so much for sharing all your knowledge and experiences. 🙏😊
Your journey with Graves so far, sounds like a bit of a roller coaster - and would have thought you would have been offered a beta blocker for your heart palpitations.
Is it possible your hospital appointment can be fast forwarded and presume your doctor is taking instruction from the hospital endocrinology department as to how to dose and monitor you in the short term.
Graves is an autoimmune condition where the thyroid is continuously stimulated causing high levels of T4 & T3.
Your thyroid is healthy but the immune system is causing the high levels. (The cause is not known)
Trab is the antibody which confirms your hyperthyroidism is caused by this condition.
It’s expected for high FT4 & FT3 and for the TSH to drop in response.
It’s quite unusual for the FT4 & FT3 to be the same or near the same value. It would mean you FT3 is disproportionately higher than your FT4.
FT3 dominance is a recognised phenomenon with Graves (occurs in 10 - 15% of cases). If this is the case there are ways to manage it.
The difficulty being the FT4 will drop too low and FT3 remains high. When using adjustment or titration of the antithyroid alone.
This is often managed by higher doses of anti thyroid with a replacement dose of Levo (T4). This in affect blocks the thyroid totally but replaces the hormone (block & replace)
As the results are exactly the same (19.1 for both) it might be worth double checking there’s not an error and not just an unusual coincidence.
To be adequately managed you should be having blood test 6 weekly to ensure you are in the right range. Do you have a history of you other results and dose alterations?
Are you taking any other medications? Propranolol is sometimes prescribed to relieve symptoms.
Have you carefully read the patient information leaflet with both anti thyroid medications as there are certain side affect which you must be vigilant for?
Graves can sometimes cause eye issues, were your forewarned of this? Smoking can increase the chances of developing associated eye issues.
Serious eye complications and issues from the medication are all extremely rare so I mention only as you do need to be aware of them but not be alarmed by them.
Was the glaucoma an existing issue from long ago or also recent?
The results in January show you were very hypothyroid. With both FT4 & FT3 being very below range and TSH rising way above range. You must have felt very unwell?
As they were so low I see why the carbimazole was stopped, hopefully you were carefully monitored before levels reached over again and Anti thyroid resumed.
PTU is usually only used if you have a poor reaction to carbimazole, it is also preferred to use during pregnancy, but you don’t mention either so I have no suggestion why doctors altered type of medication.
Glaucoma I’ve had for years. I was taken off the carbimazole at the advice of endocrinologist to the GP I think they thought it would sort itself out.
I was not feeling well at all and I feel a bit of a fraud as too look at I don’t look to bad. Besides feeling exhausted at times feeling freezing and unable to get warm then when it flips it’s like going through the menopause. My skin gets effected when I’m too hyper and hangs as if all the elasticity had gone.
Well sometimes transient hyper can occur with autoimmune thyroiditis, with levels often decline soon after. As you tested a high positive for Trab your drs should have really anticipated it to remain high for longer than a few months.
When they saw the TSH of 48 they jumped to conclusions but haven’t recognised that the antithyroid has caused it and that a dose adjustment at the appropriate time would have prevented FT4 & FT3 from dropping too low.
We do hear a lot of stories of doctors firstly rushing to start antithyroid based on low TSH. When thyroid levels care not actually high.
More recently as endocrinologist appointments seem to take months to come through we have been hearing that doctors are rushing the reduction of antithyroid to soon too.
It really needs much more careful monitoring and adjustment than what you seem to have experienced.
I recommend you start to keeping a diary of your symptoms to note any new or changing symptoms. You already seem aware of changes to you skin ect. Record any medications and supplements you take including dose.
You’ll also need to get into the habit of getting your own test results and checking what’s being tested and what the results are. keeping track of your levels and following up when tests & appointments are due will be an important step. Once you understand the results and how medication is affecting you can be your own advocate.
That sounds good advice re diary I think it will be very useful as it seems I maybe in this for the long run.
I have seen 3 GP’s over last 4 months and don’t think they know what they are doing one says one thing the other another. At least the one I insist seeing is at least liasing with the endocrinologist I’m hoping they know what they are doing as reading some posts it can be hit and miss!
when I eventually got to see one I asked if it was my thyroid and she asked me to put my hands out and as they weren’t shaking she said she doubts it but would do blood test.
Just wanted to point out that fine tremors can be difficult to see. An easy way round this is to put a single page of ordinary paper on the backs of your hands as you hold them out. If there is a tremor then the page shows it up far more readily than just your hands would.
There are several regular members on the forum who have posted frequently on the subject of Graves. You can see more of their posts on their profile pages. I notice pennyannie has already replied to you. You can see more of her posts and her profile text here :
Fruitandnutcase , who has Graves but it has been in remission for some years, also writes on the subject. You can see more of her posts and her profile text here :
Thank you humanbean ,it’s nice to have people understand and share their knowledge and understanding of the subject. Especially when your new to all the jargon of t3, t4 & TSH
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