Hi all, I found out I have hyperthyroidism over a year ago now. I was on Carbimazole which gave me quite severe side effects, I could not walk some days with the joint swelling and pain. After 7 months on the tablet and the levels just getting higher I stopped taking them and changed specialist. They have put me on propylthiouracil. I have been on these for 3 months and I am not feeling any different. I feel worse. My chest hurts from beating and that's with propranolol 4x a day. I am due to meet my specialist next month and I would like suggestions ideally on how others have managed when the medications not working. I have three young kids and a full time intense job and this is honestly ruining my life and making me feel low. Can anyone help please? TIA
Tablets not working: Hi all, I found out I have... - Thyroid UK
Tablets not working
welcome to the forum
Do you have any recent thyroid and vitamin results
Have you had TSI or Trab antibodies tested to definitely confirm autoimmune hyperthyroid disease - called Graves’ disease
Link about Graves’ disease
thyroiduk.org/hyperthyroid-...
Graves Disease antibodies test
medichecks.com/products/tsh...
Essential For full Thyroid evaluation you also need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.
Very important to test vitamin D, folate, ferritin and B12 at least once year minimum
low vitamin levels can also cause symptoms
what’s your diet like
Are you vegetarian or vegan
Gluten free or dairy free diet?
Hypothyroid symptoms can be remarkably similar to hyper thyroid symptoms
About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies
Autoimmune thyroid disease with goitre is Hashimoto’s
Autoimmune thyroid disease without goitre is Ord’s thyroiditis.
Both are autoimmune and generally called Hashimoto’s.
Early stage Hashimoto’s can initially start with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease……Graves disease or Hashimoto’s or Ord’s thyroiditis
Recommended on here that all thyroid blood tests early morning, ideally just before 9am
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant thyroid antibodies or all vitamins
List of private testing options and money off codes
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins
bluehorizonbloodtests.co.uk...
Only do private testing early Monday or Tuesday morning.
Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery
Link about thyroid blood tests
thyroiduk.org/getting-a-dia...
Link about Hashimoto’s
thyroiduk.org/hypothyroid-b...
Symptoms of hypothyroidism
thyroiduk.org/wp-content/up...
Hi slowdragon, I only have my original test results which are over a year ago now. My doctors and original specialist have been quite useless and just say that the level is much higher each blood test. I will have to have another before I see my specialist so I will add them now. I have not been told much by anyone just kept on the same tablets for a long time and now these. They have said everything else is normal but I had to take folic acid for a while. I have gone completely vegan recently I stopped dairy and gluten a while back and ive stopped eating meat for months now. I will post back on here when I have my results
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Link re access
healthunlocked.com/thyroidu...
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
So if not eating meat highly likely low or deficient in iron/ferritin
Chest tightness and/or breathlessness is common symptom of iron deficiency
Insist GP test full iron panel test including ferritin, vitamin D, B12 and folate
Or test privately
Medichecks iron panel test
medichecks.com/products/iro...
are you currently taking any vitamin supplements
Remember to stop taking any vitamin supplements that contain biotin (eg vitamin B complex) at least 5-7 days before any blood tests as biotin can falsely affect test results
thank you I have checked online but they are not there I will request them
Tests done at hospital (e.g. by consultant) might not appear on your GP records.
(It is a known and recognised problem that things don't fully link up.)
If that is the case, you would need to contact your specialist's secretary to get those results.
I'm getting bloods done tomorrow with my GP they managed to change my appointment to the 3rd of January but I am concerned they wont be back in time as I only found out today
TSH, FT4 and FT3 or Full Blood Count are often done within a few hours.
But the time does depend on the specific tests requested, your location, how things are managed in your area, and your local laboratory.
I will make sure to ask this, I'm worried because its a Saturday and then its a bank holiday Monday and my appointments Tuesday morning at 9am
Yes - I understood that. But labs work on Saturdays. Indeed, to some extend they works everyday.
Your difficulty is more likely making sure you get the results!
Best of luck.
I got some results from the nurse. My T4 is 50.1 and mu TSH is 00.1. She did not have my T3 for some reason? What does that mean? They were from my last blood test in August
Do you have the ranges on Ft4
Usually 12-22 or similar
If Ft4 is significantly over range it suggests you were still hyperthyroid in August
Where medications adjusted after these results
I just was told what is above I have requested all of my results. I had stopped taking my carbimzole and started to feel better so I requested a test from my GP and they said it had gotten much worse so I was referred to a different hospital as the other was rubbish. After an admission to hospital and further bloods done there, which I do not have the results of, my new specialist who I have not spoken to yet put me on Propylthiouracil. I am speaking to him in the 3rd over the phone with these results from the test I had today.
ideally you should have had tested today
TSH, Ft4 and Ft3 and TSI or Trab antibodies
Plus vitamin D, folate, ferritin and B12
In reality they probably will have tested TSH and Ft4
Come back with new post once you get results and ranges
If vitamins have not been tested yet request they are testing this coming week
TSI or Trab antibodies often only tested by endocrinologist
OK perfect I am going to mention all of this to him
You are legally entitled to your results. Some practices can set up access online but if not available obtain printed copies via reception with lab range (ranges vary between labs - you’ll need them for every test) It doesn’t sound as if doctors have investigated cause of hyper and it make me wonder if FT4 & FT3 are being tested or if doctors are going by TSH, the lower the TSH is the higher the thyroid levels are assumed to be.Once you have results & see what’s been tested we can explain a great deal more.
I did not know this. I've got online access so I will check now thank you 
Often, initially practices give a basic access eg coded record, prescriptions & possibly appointments. You have to specifically request full access and historical (prospective) record. Practices have 1 calendar month to set up.
perfect I will ask them tomorrow. This is really helpful thank you 🙏
I got some results from the nurse. My T4 is 50.1 and mu TSH is 00.1. She did not have my T3 for some reason? What does that mean? They were from my last blood test in August
With low TSH and over range FT4 The lab should have tested FT3. It might be the policy that only a specialist is authorised to request test or the requester or lab made error.
A FT4 that level is very high by most ranges. Were you taking 20mg x2 (40mg daily) continuous for 7 months? Were you tested and dose adjusted? I cant say for any certainty, without actual test results - but that’s a moderately high Carbimazole dose within a few months you would be hypothyroid.
You stopped the medication yourself but you may have just need a reduction - before levels were too low.
10mg of PTU is equivalent to 1mg of carbimazole. So you were originally on 40mg carbimazole the PTU equivalent would equate to 400mg. but you have a lower dose with 100mg x2 (200mg daily) it might be a more appropriate dose for you.
Once you have recent results you can adjust PTU level. If still hyper increase dose or reduce in level low. Doctors must look at FT4 & FT3 the TSH won’t be reliable.
My TSH never responded to lowering thyroid levels, I’ve taken carbimazole for 4 years.
My concern now is that was back in August and the one I had at the hospital a few months later they also said were higher and they may be even higher now. When does it become dangerous for someone? I did but mainly because of the side effects it had quite a bad effect on my joints. She kept pushing my appointment back and in the end I was forced to sell my business because I could not keep up. I will mention this also though but the PTU side effects aren't quite as bad. You think they would know what to test. I am going to make sure everything has been done properly.
If you are asking if there a certain level above the normal range at which you may become seriously or dangerously unwell then there isn’t a specific number or level.
Any long term above range level requires treatment.
Doctors would be concerned if you showed signs of thyroid “storm”. Which can occur with trauma or medical crisis and untreated hyper. This have very obvious symptoms such as very fast heart rate, fever, sweating, shaking agitated or confused state & diarrhoea. All which would prompt an A & E visit.
Doctors are taught TSH is the gold standard, (it isn’t) they let this measure rule but it’s not sufficient.
From my experience there isn’t a great deal of genuine interest in thyroid issues & I suspect the weekly clinics are “forced” on endocrinologist doctors who real interests are elsewhere.
The treatment is based on high TSH - give levo. Low TSH = antithyroid for 18 months then remove thyroid (surgery or radioactive ablation) once hypothyroid medics view it easily remedied by Levo. A minority do not manage on levo alone.
You don’t sound as of you have been carefully monitored. GPs could help with monitoring but they are often too eager to pass responsibility to the specialist.
It’s good the PTU is causing less side affects, getting levels stable will be the largest factor in resolving symptoms.
Sorry to hear you had to sell your business.
I have checked and they are not there. I wondered this also I have not had any other tests than blood tests I have only seen a doctor physically once in a year is that normal?
I had many telephone appointments, doctors go by test results, I found not having to visit in person suited me.You do need blood tests, 6 weekly until stable. You don’t sound as of you have levels under control yet.So it depends on if you mean no monitoring or no direct contact.
yeah I initially went to the endocrinology ward to meet my specialist. I have not seen anyone since then? No weighing no ECG. I also wondered if it would require a scan of the thyroid area? My neck gets really sore and my voice is crackling. I don't know if its graves? I am not sure of anything to be honest the only things I have been told that my levels are high and on the 6 blood tests I have had it has risen significantly,
If the cause is confirmed to be Graves through thyroid antibody testing (or assumed to be by doctors) scans are not routinely offered. If you have voice issues and soreness ask for a scan, (emphasise the pain & voice issues) but be prepared for them to refuse. I had a scan (ultrasound) because I had a swelling on one side. I was aspirated during appointment and confirmed benign but the function tests weren’t processed & I was incorrectly discharged. The year after my thyroid level were tested and found to be high but my antibodies were negative. After that I had a nuclear scan to look at function throughout thyroid. This confirmed a hyper nodule. So scan are usually only suggested if there’s an issue to investigate.
Ah ok that makes sense I will mention it to my doctor next month. Thank you I will post my results when I get them x
Hi Chara, PurpleNails
I wouldn’t rely on Patient Access 😬. My records online have been more doctored than I have - seriously recommend asking for printouts- keep your own meticulous records- the printouts have more detail anyway. My friend proudly showed me her online records of some blood tests the other day and only results were reported! That’s right - no ranges and no way to access them. Ridiculous. But if you didn’t know, you would presume the information given was correct- without ranges - useless. Chocolate fire guard! 😱
I honestly thought stress caused it
Hi thereDiet change , gluten removal, carbi and prophylthiouracil u have tried.Now u have to decide for radioiodine ablation or thyroid removal.But ur life will be difficult even with either of the above 2 options.
HTH
Hello Chara and welcome to the forum ;
Both Carbimzole and Propylthiouracil ( PTU ) are Anti Thyroid drugs and generally prescribed when there is a diagnosis of Graves Disease.
Graves Disease is an autoimmune disease and something has triggered your immune system to turn and attack your body and with Graves your immune system tends to attack your thyroid and eyes and I'm truly sorry these AT drugs do not seem to be relieving any of your symptoms.
Graves is said to be a stress and anxiety driven auto immune disease and there is no cure nor treatment other than the AT drugs while we wait for your immune system to calm down and your symptoms reduce and it can be a very scary time as it is as though you have lost all control of your brain, body, being and ' self ' :
All the AT drug does is block your own daily thyroid hormone production from rising any higher and slowly your T3 and T4 hormone levels should drop back down into range and your symptoms disappear.
Sometimes your T3 and T4 can fall too far through the ranges and then you experience the symptoms of hypothyroidism which are equally disabling.
Some people are then put on Block and Replace whereby they keep their own thyroid hormone production Blocked with the AT drug but a measured dose of T4 thyroid hormone is added back in to Replace some hormones to prevent your T3 and T4 falling too far through the ranges.
There should be a blood test result showing which antibodies were over range and positive at diagnosis and for Graves we are looking at abbreviations such as TSI or TR ab - and written as thyroid receptor antibody levels and it would also help to have the results of your very first blood test showing a TSH. T3 and T4 reading and range.
It is very important that you try and keep your core strength strong and solid during this first phase of Graves and you need to also run bloods for your ferritin, folate, B12 and vitamin D as no matter how well and clean your eat your metabolism is working too fast, and or too slow, to extract key nutrients through your food and if these core strength vitamins and minerals are not maintained at good levels your health issues will be compounded even further.
I too have Graves but knew nothing when diagnosed back in 2003 and all my knowledge has been learnt back to front as I went through RAI thyroid ablation in 2005 and ultimately became a lot more ill and only started my research into Graves some 10 years after my treatment.
The most recent research papers suggest the longer the patient stays on the AT medication the better the outcome for the patient but you need to be managed, with regular blood tests and adjustments of the AT drug, and possibly being treated with Block and Replace as the medications do work if on the right doses.
The thyroid is the victim in all this and not the cause as the cause is one of one's own immune system attacking your body -
but if the symptoms being tolerated are such that your life is severely compromised and intolerable there is the option of invasive treatments and the NHS generally suggest either a thyroidectomy or RAI thyroid ablation.
pubmed.ncbi.nlm.nih.gov/338...
ncbi.nlm.nih.gov/pubmed/306...
For all things Graves Disease - elaine-moore.com
For all things thyroid - thyroiduk.org
This is the most detail I have had about this condition my interactions with my specialists have been brief and I did not know enough myself to ask questions I have tried to research but there is not enough details besides symptoms and treatment options which did not describe what I am reading on this forum. I will check the links out and thank you for your reply it has really give me something to think about before I speak with my specialist.
Also I'm really concerned that my vitamin levels has not been checked at all. I am honestly gobsmacked. I have never felt so ill in my life. I worry that the NHS will offer those and they will make me underactive
Do you have any paperwork there stating a diagnosis and detailing any antibodies as over range and positive - TPO : TgAB : TSI : TR ab - for instance :
Do you also have the very first blood test results and ranges when your bloods were first run showing a TSH reading alongside Free T3 and Free T4 reading.
The thyroid is responsible for one's metabolism and the AT drug blocks your thyroid hormone production so I presume you have Graves or Hashimoto's both auto immune disease BUT not treated the same way.
With Hashimoto's the T3 and T4 do not keep rising and fall back down into range themselves and the ' hyper ' phase - the palpitations, are transient, whereas with Graves the T3 and T4 levels keep rising higher and higher and Graves is considered life threatening if not treated with an AT drug to block your own thyroid production.
So an auto immune disease has decided to attack you body and the only way to tell these 2 health issues apart at the beginning is by the antibodies found positive and over range in your blood at diagnosis.
Irrespective of whichever health issue we are looking at - your metabolism was running very fast and you experienced heart palpitation and why the Propranolol was prescribed.
Propranolol and the AT drug will have blocked and slowed down your own thyroid hormone production but there is a risk that your T3 and T4 levels can fall too far through the ranges and then rather than experience ' hyper type ' symptoms you experience the equally confusing, disabling symptoms of hypothyroidism.
Either way your metabolism is running too fast or too slow for your body to extract key nutrients through your food no matter how well and clean you eat and this in turn can make you much more unwell than need be.
Vitamins and minerals can't make you hypothyroid but having a strong core strength of ferritin, folate, B12 and vitamin D will make you more resilient, stronger and more able to manage this phase of ill health whichever thyroid AI disease you have been diagnosed with.
This is a vey stressful time for you and it very easy for me to say stop worrying and try and relax and find things to do that you enjoy and ' turn off " as your brain and body are all over the place and mismatched and it's a very uncomfortable time.
Are you jumpy and nervous for no reason - are you sleeping at all or lying there wide awake watching the hours and minutes pass - eating for England but loosing weight - exhausted just sitting on the sofa and feeling as though you have run a marathon and while your body aches your brain is telling you to run another 26 miles ?
How are you coping with 3 young children - I hope you reply saying you have some help :
I dont have any paper work only my appointments with my specialist. I am certainly going to ask for all my results so I can see for myself now I have a bit more understanding. Are the tablets that have been given right for me? And would I know if its Graves from symptoms? I am very jumpy and nervous and I am staying up later than usual even though I feel very weak and wiped out. I fall to sleep easy but seem to wake up more. I am fine whilst I am at work and busy but as soon as I get home it hits me. Things are really getting to me now mentally also. I work with high risk domestic abuse victims so my work is quite chaotic but important to me so I do not want to leave over this. My partner helps when he can but with three little ones its quite a lot
You are doing a lot and it might might some sense to get signed off sick though understand you likely have a strong sense of responsibility and a very demanding career.
You need to know which antibodies were over range and positive - as the symptoms of both AI disease are similar and easily confused by patients and medical professionals alike.
it's simply a question of degree as some Graves patients have very few symptoms whilst other have a very difficult time, and the same applies to people suffering with Hashimoto's -
The medical evidence and proof of diagnosis is the first step :
If with Graves you are on the correct medication but without seeing blood tests and dosing regimes - I can't say more than that.
Hashimoto's is not treated with AT drugs the hyper swings are transient and overtime you become hypothyroid as your gland is systematically destroyed by this AI disease and you will be prescribed T4 - Levothyroxine thyroid hormone replacement.
OK great thank you. I am going to request print outs and put them on the group I can't wait to finally have some answers and hopefully a resolution. Thank you for your information its been very helpful 😁
I got some results from the nurse. My T4 is 50.1 and mu TSH is 00.1. She did not have my T3 for some reason? What does that mean? They were from my last blood test in August
It means you are very hyperthyroid.
A typical reference interval (range) for Free T4 might be 12 to 22. You are beyond double the top of that.
(People often start to feel bad only a tiny bit above the top of the reference interval - e.g. 24.)
(Be aware, the reference intervals vary by lab. Although often similar, they can differ enough to change interpretation. Make sure you get the reference intervals each time you request results.)
They likely didn't do Free T3.
wow ok thank you. I am going to talk to him about a full blood count. I dont know why I dont know any of this its concerning
Note* from other replies , i think that was in august, stopped Carbimazole at some point , not sure for how long ....then given current dose of PTU. timeline is not clear .
I was diagnosed last December and put straight on to carbimazole which I took until July when the side effects were really ruining my quality of life. I requested my own blood test from my doctors as I took 5 weeks off work and I started to feel better. The results showed that the levels had again risen so I went to a new specialist and I have been on PTU since around September
Hello - ok - so in August your TSH was 0.01 ( welcome to the club ) and you had a T4 at 50 which will be over range by anyone's range.
We have forum members who have a T4 level much higher than 50 so do not be concerned by this number and it serves little purpose without a T3 result and range alongside it.
This does look like Graves as presumable when diagnosed your TSH will have been at 0.01 and your T4 likely much higher than it was in August as by August you had been on the AT drug for some months hadn't you ?
Did you have blood tests every 6 - 8 weeks after diagnosis to monitor your T3 nd T4 levels and have the dose of AT drug adjusted up or down ?
Once Graves ' takes off ' the T3 and T4 levels can rise dramatically and there is no way of controlling this phase of the disease - all the NHS can do is prescribe the AT drug to block your own production of any new T3 and T4 production so what ever is already in your system doesn't rise any higher and slowly your high T3 and T4 levels will reduce.
With Graves there are 2 extremes of symptoms - as you can feel both hyper and hypo as Graves carries both stimulating and blocking antibodies.
At any given time either the stimulating or blocking ' blighters ' take control of your thyroid - sometimes they cancel each other and burn each other out leaving you feeling relatively ' normal ' for you, and you might be given to thnk that it's all over - and for some people it is, and within the time frame allocated by the NHS they come off all medications and the thyroid reverts to normal and this incident just ' blip ' :
For others a thyroidectomy or RAI thyroid ablation is recommended whilst others stay on long term AT drugs.
I think I just read that your boss had RAI thyroid ablation and advises against that - well I'd second that and now wonder if your boss is self medicating as the NHS refused to offer me any alternatives to T4 thyroid hormone replacement and I now buy my own thyroid hormones and am much improved.
I will have to ask her. I understand a lot more now so I can certainly ask all these questions and post all of my results. I will avoid anything permanent for now and give my tablets time to work. I have a friend whos husband is underactive and he also suffers.
OK then - when you have any new information always start a new question so all forum members can follow your progress and we can always look back at your previous questions/threads to remind ourselves of your history, progress and treatment plan.
You can also read of our history/progress - as most of us are here because of the help and support we found when our own health was causing us concern - and now give back to try and help others - as we are a patient to patient forum - simply press on the icon alongside someone's name and you get taken to their profile page and all their posts and answers and everything every printed on their time on the forum.
This forum becomes very busy and every new question / thread tends to get answered as fully as possible within 1 - 2 days max and unless you actually reply to someone in particular any ' added on information ' you may offer after 48 hours will likely be missed as we tend to not ' look back ' at what we understand to be completed questions.
Lovely thank you very much for all of your help 😀
Hello there, I have graves disease, diagnosed 2018.I tried titation(carbimazole only)then block and replace(carbimazole and levothyroxine) but this year I had a total thyroidectomy and up to now have no regrets.I feel so much better on the whole(a couple of niggly problems) but I am 57 years old and don't expect to feel like a teenager.If you would like to read how I came to this point you can click on the picture at the side of my name and my profile tells it all.Everyone is different and I am just showing another option available.I tried other treatments first and got as much information as I could before choosing this.I was happy with my choice and wasn't forced into it by anyone.The advice and information on this site was invaluable to me and helped me understand my condition better, that way I could make an informed decision.Wishing you all the best, things can get better for you.
Thank you for this. Have you not struggled with an underactive thyroid since? I have read this on this group
At the moment my T4 levels are in range they were 18 6 weeks after my operation and then 6 weeks later they had gone down slightly to 16. range (10-18).I have been on the same dose of levothyrixine since my operation(100 mcg 5 days a week and 50mcg 2 days a week).This is suiting me and I feel fine.My endo has discharged me now I have had the op but I am still under the ENT surgeon as my calcium levels are taking a while to settle.My experience is that I am feeling Ok but I do understand that others on here have struggled.I had to have faith that I would be Ok and that gave me the confidence to have the operation.I also knew people on here would be here for support and advice if I had any problems.Hope this helps.
Just a little addition.Yes if you have your thyroid removed you will have hypothyroidism but that will be corrected by taking levothyroxine every day to replace your thyroid hormones(some people take a different form of replacement but levothyroxine is offered in the first instance normally) Daily dose is different for everyone and is checked by a blood test.(in simple terms)
Thank you. I will speak to my surgeon and look at my options
Hi Chara87❤️
Your story sounds just like mine, it took my surgery over 12 months to diagnose me with an overactive thyroid like you I was put on anti thyroid drugs.. first carbimazol which didn't work as my T3, T4.. We're rising and my TSH was suppressed, then propylthiouracil which also didn't work I felt awful.
I went back and forth to my gp explaining these drugs were not doing anything he advised me to persist with them, upshot was my T3 rose to 36.5 and my T4 was 100 TSH suppressed I was rushed into hospital in thyroid crisis.
I had an uptake scan which showed both my thyroid lobes were thyrotoxic , my thyroid lit up like a Christmas tree which was confirmed later as graves disease, unfortunately for me I had no choice but to have a full thyroidectomy as the specialist said my thyroid was actually poisoning my system.
I knew little of thyroid conditions and how they are treated, which I'm sorry to say is awful, I kick myself everyday for not seeking further help and allowing my gp to tell me all my symptoms were menupausal, I never saw a endo until I was in hospital in thyroid crisis 😔.
You really need to take charge, you need your last 2 thyroid blood tests to see just how hyper you are, you also need anti thyroid bloods done if not already done, if like me the anti thyroid drugs are not working (and my gp didn't believe me until it was to late) you need to know your options, I practically lost my voice, had tremors, my heart was beating so fast I would nearly faint and I sweated profusely, you need everything checked vitamin and minerals to..
I hope you get your answers and don't be fobbed of by specialists if you feel very unwell then this needs sorting ASAP.... Good luck.. 🍀❤️❤️
Thank you so much for your reply it made me feel sane! All the times I've typed in google tablets not working it does not give me the answer I need. This is the first I have heard about the Toxicity, does that mean the tablets wouldn't work anyway? I do not understand how they can tell from just a blood test why it is happening? I have not spoken to anyone about what is causing this such as Graves. I have had so little information the bits I do know is that it gets higher. I have not seen a blood test yet but I am having one tomorrow so I will get the results once they are in. I have a telephone appointment on the 3rd. I am worried with the more permanent treatments I will go underactive I have read this on here? I have days where I feel like I'm going to die its been a lot to manage with three kids and a full time job which is quite intense. This has made me feel a lot better thank you x
"This is the first I have heard about the Toxicity, does that mean the tablets wouldn't work anyway? "
Chara 87 , just so you understand .....birkie's case of thyroid 'toxicity' was because she couldn't tolerate taking either of the antithyroid drugs (Carbimazole / ptu).
They control the levels of T4/T3 the thyroid is able to produce. The higher the dose ~the less T4/T3 the thyroid can make.... the dose is supposed to be adjusted to get the T4/T3 levels back in range without going too low .
but if they are not taken at all , or not tken regularly (or you take them and vomit them back up ) or the dose is not adjusted properly. THEN the thyroid becomes 'thyrotoxic' ( too much T4/T3) .
It is very unusual for them not to work 'at all' .
Some people have to stop taking them even though they were working because of a fairly rare liver reaction to the drug .
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
"I do not understand how they can tell from just a blood test why it is happening? I have not spoken to anyone about what is causing this such as Graves...... I am worried with the more permanent treatments I will go underactive"
They can tell from a blood test if the hyperthyroidism is caused by Graves by looking for TRab ( Thyroid stimulating hormone Receptor antibodies) in the blood . These are what makes the thyroid make to much T4/T3 .. so if the find them they know the cause is Graves. (There are other causes of hyperthyroidism .. such as a 'hot' nodule which is producing too much T4/T3.. you need to know the cause before you make any permanent treatment decisions )
If / when the Graves antibodies (TRab) go away again, the thyroid stops making too much T4/T3 . and you are said to have gone into 'remission'.... So they usually give people with Graves about 18 months on antithyroid drugs to wait and see if this will happen. Then if remission didn't happen , (or if the person can't take the drugs) the options are:
a) to remove the thyroid .. which always leads to being hypothyroid and needing to take Levo for life.
b) to use Radioactive Iodine to slowly destroy the thyroid .. which will nearly always lead to being hypothyroid and needing Thyroid Hormone for life... it might take a few months or years before this happens .. but it will nearly always happen in the end.
c) continue to take a long term maintainence dose of antithyroid drugs which will keep the thyroid under control. Endo's don't often mention that c) is a suitable option for some poeple, but it is..... they prefer to get people off their books quickly , so they push options a) and b) .
So don't get rushed into permanent treatment until you are sure you understand exactly what is going on with your diagnosis and treatment. They WILL try to rush you on this decision because they want to get their waiting lists down, and they really do seem to believe everyone who is made hypothyroid will feel fine once they are put on Levo .... but at the moment it is not clear to you what the cause for your hyperthyroidsm is .. and it is also not clear to us if they have been doing a good enough job of adjusting your dose of PTU / or carbimazole to see if you can feel ok by taking them to properly control your T4/T3 levels.
Your August fT4 being as high as 50 strongly suggests your dose of carbimazole was not being adjusted correctly.
I see. My lack of understanding is very alarming to me. My last doctor was not good with explanations so I am hoping this new doctor will be. I am writing all of this information down as for all I know they already have all of this information just not explained it to me. It has been just over a year since I started Carbimazole she adjusted it on two occasions I started on a low dose. I appreciate now that I may have to have patience. I was all for the Iodine treatment until I spoke to my boss who had that same treatment and she said it turned who into Hypo. This is when I found this group the information online has not been helpful to me. Thank you
They don't often explain much to anyone ,,so unless you already knew the right questions to ask , you get funnelled down the route to RAI.. which is the 'preferred' treatment option.... but 'preferred' means "most efficient/ cost effective/ permanent method of getting rid of the hyperthyroidism once and for all".... it does not mean it is the method most 'preferred by patients' .
Surgery is expensive and takes up beds , and they usually don't mention the option of staying on long term low dose antithyroid drugs at all , because it means people need to stay on the (expensive) endocrinology books, as opposed to being given RAI and passed back to the (cheaper) GP to monitor until they eventually need Levo and the GP can prescribe that without any Endo involvement.
They assume most people either aren't interested in the details of the cause of their hyper or how to monitor T4 / T3 levels during treatment , or won't understand them.
It never ceases to amaze me how many people come here apparently with the idea that having RAI won't make them become hypothyroid . That is precisely what it's meant to do .. slowly kill the thyroid off.
It is very unusual to have RAI and not need Levo at some point later . (it can happen , but it's very unusual) .
Are Endo's really giving patients the idea that 'RAI will fix you and then you'll be fine' ?
most will be 'fine' for a few months , or a few years ,and then become hypothyroid and need Levo.
I do not want this so I am going to wait it out and give my tablets the time to work
Toxic refers to toxic levels of thyroid hormone.
Your doctors are assuming your thyroid is over producing hormones or that your high levels are from a continuous cause resulting in continued high levels. Anti thyroid medication works by altering the way the body uses iodine which inhibits the level of new hormone the thyroid is able to produce.
Once the body uses up existing stores the right level of medication has to be found to allow enough hormones to be produced to keep you in range. Too high a dose you become hypo, too low a anti thyroid dose you become / remain hyper. PTU affects conversation more than carbimazole which can be helpful if hyper.
Splitting higher doses through day is beneficial in begining. Was this how you started. Once levels in range a single dose might be all that's required.
I was put on 20mg x2 a day of carbimazole at first and I am now on 100mg of Propylthiouracil 2 twice daily,
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