I was diagnosed with an Hyperthyroidism in late April and put on 10mg of Carbimazole. They subsequently reduced it to 5mg as the 10mg was over treating it. I have had 4 blood tests:
Orignal;
TSH: 0.01, FT4: 31.2, FT3: 8.0
2nd
TSH: 7.80, FT4: 6.4, FT3: 3.8 (medication reduced to 5mg)
3rd
TSH: 4.5, FT4: 8.5, FT3: 5.4
4TH
TSH: 4.12, FT4: 9.1, FT3 5.9
What does all this mean?
They are still running tests to find a cause of the underlying over active Thyroid and if the TSH receptor antibodies are negative they will organise a scan.
My concern is how bad i still feel on a relatively low dose of Carbimazole, Brain Fog, exhaustion, anxeity, i feel a shadow of myself. Could the Carbimazole be the problem?
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johndoe49
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I only have the figures i have supplied, so not sure what the ranges are. I was prescribed Carbimazole before the TSI was tested. The only other information i have is that Microsomal antibodies negative at 1.5.
Without testing TRAb or TSI antibodies then there is not proof positive that you need Carbimazole.
Graves disease (an autoimmune condition) is the most common cause of overactive thyroid and is confirmed by positive TRAb or TSI antibodies.
Hashimoto's is another autoimmune condition which causes underactive thyroid and this frequently starts with a transient "hyper" period. TPO antibodies are usually positive when Hashi's is present but it's possible to have negative TPO but positive Tg antibodies and have Hashi's, and just to complicate things it's possible to have Hashi's without positive antibodies.
Many doctors and endos see what appears to be results for overactive thyroid when it is, in fact, an intial transient hyper phase of Hashi's and they mistakenly diagnose overactive thyroid and prescribe Carbimazole. This is why it's important that the antibody tests are done before prescribing to ensure the correct treatment is given.
Hashi's can also be diagnosed by scan.
Your original results do show high FT4 and FT3 but possibly not high enough for Graves disease.
The fact that 10mg Carbimazole made such a big difference (I think - but not 100% sure - that normal dose starts higher than that) and gave you very underactive results which have become more underactive then in my opinion this casts doubt on your diagnosis.
So, it's possible that your endo has jumped the gun and come to the wrong conclusion. Only testing the antibodies and/or will tell.
It was definitely 10mg initially and after 1 month it went down to 5mg. I was surprised as well that such a low starting dose caused me to go the other way in such a short time. Its just i still feel dreadful and im sure its the Carb, even though its a low dose. I've read other posts from people that feel they have suffered with Carb but they were all on a much higher dosage.
I will go about getting tested for the things you said, i do already have a B12 injection every 12 weeks so thats under control. Diet is ok, could be better but im not vegan or vegetarian and not intolerant to gluten or dairy as far as i know.
I forgot to mention in my original post that all my symptoms of Hyperthyroidism started after a throat infection where it hurt to touch the glands either side of neck towards the shoulders.
i had the sore throat for about a 10 days, then i had a covid like (the lateral flows were negative but who knows) illness then i had the Overactive Thyroid symptoms
I was one of the members outlined by SeasideSusie and SlowDragon diagnosed initially as having Graves, but on following their advice to test antibodies privately, I found out that I actually have Hashimotos. My early results and symptoms were indicative of hyperthyroidism, but I’m definitely under active. My advice, test the antibodies privately if your health providers are reluctant to do this.
Something has triggered your thyroid to over produce T3 and T4 thyroid hormones and the thyroid is a major gland, the body's engine, and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
If your thyroid has been triggered by an auto immune thyroid disease - we are looking at either Graves or Hashimoto's and initially the only way to tell these two apart is by which antibody has been found to be over range positive through blood analysis generally run from the original blood test at diagnosis and before any treatment is prescribed as these two AI diseases are not treated the same.
For Graves we are looking at either a TR ab -a thyroid receptor blocking or a TSI - a thyroid stimulating antibody positive and over range.
For Hashimoto's we are looking at either a TPO - thyroid peroxidase and or TgAB - thyroglobulin reading positive and over range.
There is no cure for either auto immune disease :
Graves in considered life threatening as the T3 and T4 levels keep rising, higher and higher, and an Anti Thyroid drug, like Carbimazole is prescribed to block your own thyroid hormone production and given time your T3 and T4 will start to reduce, with you hopefully feeling a relief of symptoms being suffered.
Hashimoto's is transient in nature and the T3 and T4 are not as extreme and they fall back down into range by themselves and over time with every attack the thyroid gland becomes damaged and production reduces, and you the patient start to experience symptoms of hypothyroidism and T4 levothyroxine is prescribed to support the disabled glands limited production.
You might like to dip into the Thyroid UK website who are the charity who support this forum www,thyroiuk.org and where you will find a list of symptoms experienced when hyperthyroid and hypothyroid - and we are looking at the extreme ends of the T3 measuring stick - as too low a level of T3 for you and you will experience symptoms of hypothyroidism just as too high a level of T3 for you and you will experience symptoms of a hyperthyroidism.
However, it's not that easy as some symptoms cross over and can be experienced when either hyper or hypo.
You have been on a rollercoaster of a ride, and your whole system has been turned upside down and your body is in turmoil and now you need to rest and let your brain, body and soul reset and readjust :
The AT drug needs to be titrated down as your T3 and T4 fall back down into range otherwise you risk falling too far through the ranges and experience the equally disabling symptoms of hypothyroidism.
Likely on that 2nd blood test when your T3 dropped to around 3 and likely near the bottom of the range:
The blood tests are just a snap shot in time and tend to run behind symptoms experienced :
All the AT drug does is buy you time and the hope is your immune system response calms down and your antibodies, both stimulating and blocking, stop raging causing a raft of symptoms and likely leaving you feeling very uncomfortable within your body.
Hope that makes some sense through the brain fog :
Thank you for the in depth and informative reply, i guess its just a case of waiting to see what antibodies are found and go from there. I do believe it has all stemmed from the Covid like illness, its like i fell ill with it, then when i recovered from it i recovered to be a completely different person, i know that sounds daft but its the best i can describe it.
There's no need to apologise - I just thought it funny corresponding with a Johndoe as in the TV movies it's generally a dead body !!!
Well, yes, and this is generally the problem with mainstream medical as when they see you anywhere in a range think they have restored your health - it's subtle all about where you need your T3 and T4 to be within these ranges to give you back your wellness.
Thyroid hormones are not a quick fix - and we never have our thyroid tested when well so have no idea where in these ranges we need to be.
Once on thyroid hormone replacement and synthetic T4 medication we generally see ourselves improved when this is in the top quadranr of the range as this should then convert to a good levels of T3 within our body at around a 1/4 ratio. T3/T4.
We don't have the levels for your results but am guessing they would likely be a range T3 of 3.10 - 6.80 and a range of T4 of 12.00 - 22.00 :
The AT drug can be titrated up or down and blocks your own thyroid hormones - so by titrating the dose little more or a little less of your own thyroid hormone production can be released or stopped.
The antibodies are both stimulating and blocking and there is a middle ground where they tend to offset each others extremes of symptoms and you feel " relatively normal " in this first phase of the disease.
What symptoms are you still experiencing ?
Do they coincide with the list held on Thyroid Uk website ?
If your heart is involved you can be prescribed a beta blocker to make you more comfortable.
So everybody has there own range? Its not a 1 size fits all? What is worse? T4 or T3? Excuse my ignorance but as you said its not the kind of thing you look into when you're well. I just thought it was a case of taking the tablets until the levels were right then job done. My worse symptom is fatigue followed by brain fog and anxeity. I think some of the anxeity is caused by fact im self employed and off work because of the fatigue and brain fog though. I notice you mention the first phase of the illness. I was hoping after 4 months i would be at the end of it! Good lord!
Correct - it's just like saying we all wear the same size shoe - maybe we can all squeeze into the shoe but some will find it too big just as others will find it too small and whilst others need a broader, or narrower fit.
I have Graves and my initial symptoms were insomnia, dry gritty eyes and the continued exhaustion I had just ' lived with ' for years.
I was well on the Carbimazole continued to work and had RAI thyroid ablation the following year 2005.
In 2004 I was physically threatened and verbally abused by a man I took on as my assistant manager and 3 months later diagnosed Graves - I didn't put the two things together until around 10 years later when researching Graves and very unwell with the treatment prescribed on the NHS.
Graves can occur after a sudden shock to the system like a car accident or the unexpected death of a loved one and I only started putting my jigsaw pieces together around 6 years ago when I found this forum and started researching my health myself.
Graves is an auto immune disease - there is no cure - so the NHS suggest that they remove the thyroid and simply flip you into hypothyroidism - which is simplistic but does get you discharged back out into primary care, presumed better !
But we don't know what thyroid disease you have - if you even have one - so we need to wait for the answer on which antibodies, if any, were found over range and positive.
I was eventually diagnosed in 2019 with graves after suffering through the hands of an incompetent gp who for over 12 months told me it was the menupause 😤 without my surgery doing the antibodies test I was also prescribed carbimazol put on this in sep 2018 and left to get on with it, at no point did my surgery re test my bloods after going on the anti thyroid drug or send me to an endo.. My results on the day of actual diagnosis was TSH suppressed, T3 24.2..no T4 done..unfortunately I was worse on the carbimazol and keep vomiting, I was then tried on ptu another anti thyroid medication but were the same, I eventually went in to thyroid storm and lost my thyroid in 2019, I regret to this day that I allowed this gp to treat me so badly, I knew nothing about thyroid conditions and regret not learning about the many different thyroid illnesses,
I found this site and have learned so much about the thyroid, probably way more than a gp or endo, from my experience and many others, gps endos know very little about thyroid conditions and how to treat them, from my experience they looked at the test results jumped on overactive thyroid and prescribed the anti thiyroid meds, I'm sure my gp thought I'd just go away with this drug and propranolol and be fine, nothing seems to have changed much in the way gps and endos deal with us the patient, you have been given some great advice and guidance from members on here, be vigilant and take your thyroid health into your own hands with the help from people on here, always ask your gp and endo questions, get bloodwork print outs and keep a file record of them, Im now struggling with thyroid meds to, so its still an ongoing nightmare for me😤 I hope you get the answers you need from the so called professionals, best of luck🍀
It certainly seems there is so much more to it than the GP has told me and i took it for granted that he knew best. I don't understand what all the results mean (whether im improving in some areas but not others etc) so the information i have given has been enlightening and will be looking into private testing. The fact i feel only slightly better in 4 months made me think it was the Carbimazole. Im getting to the point where im forgetting what its like to feel "normal" How are you suffering with your meds?
I really hope you get the correct info on your condition which ever one it may be, unfortunately for me as I said my gp never re done my bloods after my initial diagnosis and blood results showing hyperthyroidism, just popped me on the anti thyroid medication bob's ya uncle off you go😤.
Being I have bad stomach and gut issues ( lactose intolorent /colitis) I have found the thyroid medication ie T4 both lactose free still affect me it's the fillers I react to🤦♀️.. My endo did put me on T3 which did restore my T3 level I did feel better, but had a horrible metallic taste in the morning, but now after my parathyroid hormone and calcium went over range and the endo saying I probably have primary hyperparathyroidism I'm in limbo as my bloods for this condition have gone bk to normal but are at the top end of normal, spoke to a parathyroid surgeon on Wednesday who as said due to the erratic pth you probably do have a parathyroid problem but the NHS will be reluctant to do anything with you now as your levels have returned to normal.... Even though this is common in primary hyperparathyroidism they bounce in and out, but my surgery are refusing to do further investigations, but this surgeon as invited me to see him, he is going to scan my neck and re do all blood work 👍 it's honestly been a nightmare dealing with the NHS... It truly is a lottery 🤦♀️🤦♀️😤😤😤
Thats how it seemed with me, there are your meds, now off you pop! I had to practically beg him to do a Thyroid test in the first place! Any way i got a referral letter which said if i hadn't heard from the Endo by a specific date then to call them. So i called them after the date had passed and they said an appointment will come through the post as its only a routine appointment. Im self employed and off work, try telling that to mortgage company!
I genuinely did not understand all the complications behind it all, what is T4 meds? What are T3 meds? Why are the surgery refusing to do any more tests? What will a scan of the neck show?
Firstly I'm so sick of my surgery treating me as if I have a thyroid.. I had full thyroidectomy in 2019 they treat you for hypothyroidism after removing your thyroid, but some people are hypo with a thyroid so we who have had thyroidectomy get bunched up with them and given the same treatment, doctors and endos don't seem to understand that the loop is broken when the thyroid is removed, in any given circumstance if it's hyper/hypo hashis or on t4/T3 or anti thyroid medication our bloods should be taken regularly to see how these drugs are performing, but it seems GPS just want you out of there surgery, 😠
I had much the same as you with the endo.. Only I was in THYROID CRISIS!! my T3 was 39.5..t4 100 TSH suppressed and still the endo asked why I needed to see him and why did I need an uptake scan 🤷♀️.. I was in hospital for 15 days and had to travel from my hospital bed by taxi to his clinic a town over.. Nhs eh.. 🙄.. I was never told about any complications due to hyperthyroidism /thyroidectomy, later diagnosed as graves thyrotoxic, my surgeon just told me "you need your thyroid removed, then afterwards you will take T4 and never look back 🤣🤣🤣 if only.. I can tell you in the beginning of my eventual diagnosis I was put on anti thyroid meds, as I said without my gp even knowing what thyroid condition I had.. I think this was my downfall because I firmly believed my gp knew what she was doing, "WRONG", I suffered from sep 19th 2018 till full thyroidectomy in May 2019..through the total lack of knowledge by my gp on thyroid conditions, and my gp trying to stuff anti thyroid meds down my neck in the hope I'd just go away 😤
The parathyroid surgeon is hoping he gets a hit on a overactive para gland through the neck scan, 🤞Have u been offered a scan on your thyroid? .. I think someone my have already mentioned it on here, along with the anti bodie test, these can either rule graves in or out..but you will need to be very pro active in looking after your own journey to thyroid health as the pros really have no idea, and go with out dated nhs guidelines 🤦♀️ this site is the best place to be for info on everything thyroid 💪💪💪
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