Have you rung reception and asked for a printout that includes lab ranges? Alternatively you could ask reception to organise online access to blood test results. By law you are entitled to them. COVID is no excuse.
Hi yes I have she said I have to take id to the gp surgery which as this stand atm we are not meant to go to the surgery unless an emergency and this is not classed as one she said. I just feel so awful and can’t wait another 4 months for another appointment.
I would ring again and tell her that it might not be an emergency but it's their legal obligation to provide full results. They could do a print out with lab ranges and post it to you. What they've provided is inadequate. Ring the practice manager and ask for it to be sorted out quickly as you've already experienced a delay with incomplete results posted to you.
Did you manage a phone conversation with your doctor as suggested on your first post ?
Did you get an answer on which antibodies had been tested ?
So your TSH has remained pretty much the same at around 7.7 and your
T4 has dropped from 18.6 to now at 8.60 : guess range of 12 - 22 :
with a T3 of 6.90. that is ok : guess range 3.10 - 6.80 :
I don't have any idea how long it takes for the AT meds to totally leave your body.
The normal range of T4 is around 12 - 22.0 so now you have fallen too low which could still be the AT drugs blocking your own natural production - which when diagnosed at the hospital was up at around 122 - wasn't it ?
You may find the longer you stay off the AT drug that your levels fall back into range.
Do you still have the symptoms that necessitated you're first hospital visit ?
You really do need to know what the diagnosis is and the medical evidence to prove the diagnosis.
I don't have any idea how long it takes for the AT meds to totally leave your body.
Carbimazole has a half-life measured in hours. That is why, at least at the start of treatment, split dosing is common. Otherwise the level in the bloodstream can drop enough before the next dose for more thyroid hormone to be manufactured and released.
However, the thyroid does not necessarily suddenly return to its former function as soon as the blood level of carbimazole drops.
I really do think you need an explanation of what has happened to you - is it possible to see the doctor in person and simply ask these few questions ?
What were you originally diagnosed with and treated for, and ask for a copy of the blood test results that backed up this diagnosis.
Since you have now been told to stop all AT medications are you to presume the original diagnosis and treatment wrong,?
What is the diagnosis now, where is the medical evidence, do you need further blood tests and medical support as 4 months seems a very long time to wait when unwell and confused with the medical help and instructions you have experienced.
When you speak with your doctor on Monday you might just learn something else and if s/he has print outs of all your tests and results can offer you your copies :
Since the hospital seem to be distancing themselves from you for the next 4 months maybe your doctor will feel more able and step up and run the appropriate full blood test :
Morning , back when this started I went to the hospital because I thought had something wrong with my heart since then symptoms have just got so bad. I feel so unwell nearly all the time.
The thyroid is a major gland and some people refer to it as the body's engine.
So in my very basic understanding of all things medical :- does it seem like you are a car with kangaroo petrol, and you can stutter and start and then feel ok for a while ?
When under ' attack ' by your immune system the thyroid can throw all sorts of symptoms your way, and one is heart palpitations.
This appeared to be your main concern and it reads as though it still is :
Did the beta blockers help -and if so, can these be reinstated.
Talk through your continued symptoms with your doctor, you need reassurance and the doctor is there to offer this advice and support.
Thank you. Yes I do still have the palpitations but not as bad as before my pulse is on average 150 at rest. I have so many other symptoms now I have put on over a stone in weight (even though calorie counting ) all my joints hurt so bad sometimes I can barely walk my hair is a mess I have hardly any eye brows left my nails are all flaky I have blurred vision if I try to read I can’t sleep for more than an hour at a time so constantly tired. Sorry feeling sorry for myself.
Thank you for the advise I will call my doctor again tomorrow.
You are going through a phase of an illness, and yes, it's debilitating, confusing and the not knowing makes everything worse as you want answers, an understanding and a solution as to where you are now, and a plan to what " happens next " - and I would think this quite a normal reaction, in anybody's book :
The AT drugs have blocked your own natural production of thyroid hormones, and the symptoms you mention are all part of this and now we have to wait for your own thyroid hormones to start producing again.
Imagine a seesaw - it works best when both ends have a balanced weight : as the children respond to each other, and have fun, giving each the other bounce, and the bumps.
This is a normal thyroid, responding to normal life, allowing overdrive, reverse, and all stations in between, like a gear box in automatic gear simply working without too much thinking, responding and adjusting to life's stresses and strains as one does.
Hyper is sitting on one end of this seesaw and hypo is sitting on the other :
When well and getting on with one's life your thyroid hormones are balanced :
When your thyroid comes under attack from your immune system the thyroid goes a bit haywire and your natural, unique balance goes out of sync causing hyper or hypo symptoms : all the symptoms you now describe are known to be thyroid related.
The AT drugs prescribed blocked your own thyroid hormone production and have now caused hypothyroid symptoms, whilst you are still dealing with the aftermath of the hyperactive phase, so it's a bit like a double whammy.
I'm with Graves and looking back then, when I knew nothing about the thyroid or the disease, I was exhausted for a good few years after I was meant to be " better " after the RAI treatment. But then I had been on the AT drugs for around 18 months and not just 8 weeks, so it's impossible to draw a line between yours and my situation.
But you will have symptoms, that you doctor maybe able to help you manage, especially with the palpitations which are frightening and debilitating as you'll keep second guessing yourself, as to if being able to do stuff, , and I think, if I remember rightly , you've three young children, so this is a trying time, and you need help, both in practical and other ways, to allow you time to recover.
Your thyroid will recover and your own natural, unique balance of hormones will be restored. But we do need to know why your thyroid is misfiring and we can only know this when we have the antibody blood test, to confirm a diagnosis and then medicate with the appropriate thyroid medication.
Sorry I've gone on a bit and switched from seesaws to car engines, but I hope it gives you a better understanding of where you are now :
P.S. When well your thyroid is in neutral gear - when attacked by antibodies it goes a bit haywire, and your thyroid jumped and got stuck in fourth gear, overdrive :
The AT drugs manually blocked any further thyroid hormones being produced, like cutting the petrol, your fuel tank, which can cause symptoms of hypothyroidism.
It's a fine balance, but once the AT drugs are fully out of your system your own thyroid hormone production should naturally restore itself.
P.S. think I should have added :
as your own thyroid returns to your ' normal ' your TSH will come down and it will be possible to chart your progress through your T3 and T4 blood test results : your T3 will come down a little to a level within the T3 range and your T4 will come up into the T4 range and it's the fine balance between these two vital hormones that gives you back ' you ' :
Just enough T3 and T4 to balance each other and generally most people feel well when the balance between these two thyroid hormones is around a 1 / 4 ratio T3 to T4. as T3 is said to be about four times more powerful than T4 : and I now think I'm back on the seesaw - balancing out the hyper and hypo symptoms.
This could all be too much information, sorry if I've confused you.
Pennyannie - that is the best description of thyroid malfunctioning I've ever read! You have a way with words! I don't want to impose but given your experience wanted to ask your opinion. I have Hashi's and never any issues for 5 years but I was severely overmedicated in 2018 on thyroid meds (taking T3 to be exact) and diagnosed early 2019 with "iatrogenic hyperthyroidism" - that is basically hyperthyroidism caused by taking too much medicine and not from my thyroid producing too much hormone. So I spent 2019 taking NO medicine as the overmedication leached from my system - can't describe how sick I have been the last 2 years have been horrible. My doc (who is at a top hospital in the US) explained it would take around 18 months for this to work it's way through and sure enough - I am at 18 months now and finally starting to see the distinct hyper symptoms fading and my TSH rising -- in the last few months TSH went from 2.8 to 3.3 to 4.3 to 5.2 (range in US is .5 - 4.5). Doc says I will need to start a low dose of levothyroxine but I am terrified taking meds again will start up the hyper symptoms again. He says that shouldn't happen because my body needs the T4 now - but I cannot face taking a step back to those debilitating hyper symptoms. Any thoughts? Why 18 months? Hyper is horrible! Been so sick for so long
Whilst flattery may get you somewhere - I don't think I can offer you the level of expertise you may think.
I'm just another, on this website looking for answers and helping out when I think I maybe able to assist someone, by putting a different ' spin ' on sometimes confusing, complicated issues, which when either hyper or hypothyroid can be a difficult time.
This website saved my life and I just try giving back as I feel so grateful and indebted.
However I do not feel comfortable advising on a one to one basis with anybody and prefer to offer my help from within the group of forum members, most of whom know a lot more than me.
I think you need to start your own post, and address the forum, in the usual way.
At age 69 I had to become my own dyslexic doctor for Graves Disease, thyroid eye disease and hypothyroidism and currently I am forced to self medicate, buying my own full thyroid hormone replacement and slowly getting my own life back.
I think a lot of us are the same as you pennyannie I am just repeating what I have learned over the last 12 years and sharing my own experience of thyroid disease. I am not medically trained but I did work for the NHS for many years. Even though I know how to use the service it really hasn't helped me get the correct treatment I need and I have been fobbed off by a lot of doctors who think I am making up my symptoms. Years ago people were treated by symptoms not blood tests and in my opinion that was a much better way to treat thyroid disease than it is now.
Pennyannie - thank you for the response! It amazes me how many people are forced to self medicate because doctors are simply not tuned in to the thyroid! I'm in the US and my experience has been the endos here focus on diabetic patients. I have a really good doctor I trust who has helped me through this overmedication, but it has been a real struggle and I still want to better understand what I'm going through. When I first was overmedicated had the multiple doctors I visited been tuned into symptoms and not the almighty blood ranged I would have caught this before it got so severe. I recently read an excerpt from a book that instantly grabbed my attention by William Hanna Thomson written in 1904 called "Graves' Disease with and without Exophthalmic Goiter" so I ended up buying the book - and he painstakingly analyzed many patients who came to him having what ended up being Graves - he was able to, with careful observation of symptoms, determine these patients had Graves and not some other disease - in 1904!!! It's uncanny how many of these common symptoms I experienced but doctors did not listen to me so I went without property treatment. Doctors in the US mostly depend on the blood ranges and nothing more. It is such a shame so many of us have to suffer for so long and work so hard to figure out what we need. I appreciate your comment and wish you the best!
Well Graves owes it's unfortunate name to the Irish doctor Robert James who first recognised the symptoms in patients way back in 1835.
Though thanks to Wiki I can now impress you further with a 12th century finding from a Persian source - such fascinating information.
It seems not much has changed except maybe we seem to be going backwards, as symptoms now seem secondary to a computer and some number crunching and the insistence that you therefore are " better " than whatever you may say or feel !!!
When my Endocrinologist first told me I had Graves' disease I went home and researched it and all these horrible pictures popped up. There were people with protruding eyes and large goiters. I was horrified that I was going to end up like that after being left untreated for over 2 years. Luckily I didn't and I think some of the people in the pictures must have been left for a lot longer than me or were more extreme cases. I actually knew a woman at one of my daughter's toddlers group who had it. She was very nervous, thin and had big staring eyes. I just thought she was an anxious mum but no she had Graves' and had her thyroid removed I think. I often think about her and wonder how she is 30 years later. Hopefully I will be able to keep my thyroid but I have no idea what will happen if my goiter gets any bigger and starts to interfere with my breathing etc. in the future.
I actually did look into getting the test done privately but can’t afford it atm 🙁 and the consultant said would consider it after next appointment if still no better. Problem was having a phone appointment felt very rushed and felt unable to convey to him how unwell I actually felt as all he kept saying yes this is related to the thyroid. I called my gp on the Monday after and all she said was that she couldn’t really give any advise because I was now under the hospital !!!
Thyroid antibodies for hypothyroidism (hashimoto’s)
TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Basically you are testing as hypothyroid so they took you off your hyperactive thyroid meds to see if you will normalize. If not they will start you at a lower dose and test you every few months until they get you into the normal range. With tsh you should be between 0.5 to 3.0. The other values are hard to pin down without further information because different labs measure it different ways. I hope that helps.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.