This paper is from China so there are significant differences - they use methimazole rather than carbimazole (very little real difference), and the cost of hospital nights is much, much lower than in the UK (or USA).
However, the reason I am posting is to emphasise that suspected agranulocytosis needs to be investigated immediately. That is, do go to Accident and Emergency, do demand appropriate blood tests, etc.
Catching it as early as possible has the potential for massive savings of costs. A few blood tests which end up showing no issue are far less a cost than a stay in hospital. Don't feel bad about going to A&E. Feel good about being responsible - for your own benefit and for the cost savings to the healthcare system.
Endocr Pract. 2021 Jun 30;S1530-891X(21)01113-7.
doi: 10.1016/j.eprac.2021.06.017. Online ahead of print.
THIONAMIDE-INDUCED AGRANULOCYTOSIS: A RETROSPECTIVE ANALYSIS OF 36 PATIENTS WITH HYPERTHYROIDISM
Dongchun Zhu 1 , Shiqi Zhang 2 , Xi Cao 3 , Quan Xia 1 , Qiu Zhang 2 , Datong Deng 2 , Shan Gao 4 , Haixia Yu 3 , Yaru Liu 3 , Haiyun Zhou 3 , Fangbiao Tao 5 , Xuqun Sun 6
• PMID: 34216800
• DOI: 10.1016/j.eprac.2021.06.017
Abstract
Objective:
Agranulocytosis is a rare but serious adverse drug reaction (ADR) of thionamide antithyroid drugs (ATDs). We explored the characteristics of ADRs in patients with hyperthyroidism.
Methods:
This retrospective study included 3558 inpatients with Graves' disease (GD) treated in a Class A Grade 3 hospital between 2015 and 2019. The clinical presentation and laboratory workup of patients with ATD-induced agranulocytosis were analyzed.
Results:
Agranulocytosis was thought to be caused by ATD in 36 patients. The hospital length of stay (h-LOS) was 12 (10-16) days, and hospitalization costs were approximately $2810.89 (2156.50-4164.67). The median duration of ATD therapy prior to agranulocytosis development was 30 (20-40) days. Fever (83.33%) and sore throat (75%) were the most common symptoms as early signs of agranulocytosis. The lowest neutrophil counts were 0.01 (0.00-0.03) × 109/L and 0.14 (0.02-0.29) × 109/L in the methimazole and propylthiouracil groups, respectively (P = 0.037). The recovery times of agranulocytosis were 9.32 ± 2.89 days and 5.60 ± 4.10 days in the methimazole and propylthiouracil groups, respectively (P = 0.016). Severe agranulocytosis patients required a longer time to recover (P <0.001) and had closer to normal serum thyroxine (T4) and triiodothyronine (T3) concentrations. The interval between the first symptom of agranulocytosis and ATD withdrawal was 1 (0-3) day.
Conclusions:
Agranulocytosis patients needed a long h-LOS and incurred high costs. Methimazole was prone to causing more serious agranulocytosis than propylthiouracil. High thyroid hormone was unlikely to play a role in the ADR. Patient education is important.
The most important symptoms to be vigilant for are
* Sore throat
* mouth ulcers
* Fever
* Unusual bruising or bleeding
* Feeling unusually tired
* Generally unwell or think that you may have an infection.
The doctor should arrange a full blood count, so white cells can be checked.
I’ve seen it reported on here a patient was told it’s not necessary after the first few months but that is not correct the risk, although low, never completely disappears.
I also now make it a habit to reread the patient information which is dispensed with the medication, at least every months or so. The information does gets updated & it’s worth reminding yourself of side affects which can be associated but forgotten about after taking it for a long while.
Well I read this with gutso... after about 12 months of going bk and forth to my gp with what was clearly hyperthyroidism, I finally got diagnosed in sep 2018, to this day I have no idea what tests my gp was performing on me I told him on several occasions it was my thyroid (after I put all my symptoms on to the NHS website and hyperthyroidism came up) I've just recently required my medical records and found going back to that time he only did TSH of which a few were below range one was short suppressed, no wonder he couldn't Diagnose me no T3, T4 done.. Although the TSH should have raised a few red flags, I also found a letter from an endocrinologist dating bk to 2011 which states "karen has had a few episodes of thyroiditis (a swelling of the thyroid) I had no idea I had this diagnosis. When I finally got my hyperthyroidism diagnosis I was put on carbimazol after about a week I found myself feeling very sick (nauseated) and had the most bad stomach and bowle pain, eventually i vomiting and then had server diarrhea, I persisted for another 2 weeks as I was told it needed to get into my system, anyway by then I was very sick no sooner had I swallowed the tablets as it was back up, I rang my surgery to inform my gp of this but he insisted I keep trying, upshot after another 2 weeks I was still throwing the tablet back and had bad diarrhea , I feared if this was not getting into my system then the anti thyroid drug would not be helping with my hyperthyroidism!! Again he insisted I just get on with it, I told him the tablet was coming up as it went down.. WHOLE.. he insisted I get on with it... After a number of weeks... This is by now about 2 months on this anti thyroid medication not getting in to my system he eventually relented after my T3 came bk as 34.5...range 3.10...6.80)..he then put me on propylthlouracil,the same occurred the gp by now was angry with me saying I was bringing the tablet back myself (ho yes like I want to do that) eventually I became so ill I was rushed in to hospital in thyroid storm.. TSH.. suppressed, )T3.. 39.5...)T4...100) i was totally out of it, came round some hours later hooked up to god knows what!! A gentleman in A&E came in and gave me 6 small tables he told me to take them immediately I did without asking what they were, silly me... Then I was put on a ward and given 6 more of these tablets I stupidity took them THEN asked the nurse what they were... She said propylthlouracil anti thyroid drugs.. I nearly hyperventelated saying I've been having a bad reaction to these drugs.. She laughed and said you'll be fine.. After about 15 minutes or so I started again with the sickness and bowel pain, vomited over the bed and soiled myself at the same time😢.. They rushed me to a private room then noticed my whole tummy was swollen, they got me a scan which showed server inflammation in the small intestines and in the large intestines, the lining of my stomach was bleeding.. Here's the kicker they the consultants stood and scratched there heads as they had No idea what was wrong with me.. I kept saying its the anti thyroid medication, there answer... We don't know of anyone who has had a bad reaction to any anti thyroid medication!! 🤷♀️.. I said "well your looking at one" they dismissed it saying I probably had something else wrong, I said I do have colitis could the medication be causing it to flare up... NO.. was the answer, only one doctor on that ward believed me, he then asked me what my uptake scan was on my thyroid, I said I've not had an uptake scan.. He then proceded to ask me what kind of thyroid condition I had.. Hyper I said.. He said yes but you can have hashis or graves you definitely haven't got hypo we know that!!.. He was appalled I'd not been given a scan, he immediately requested one I had it 2 weeks later it showed massive uptake in both lobes and the report said thyrotoxicosis the endocrinologist recommended it should be removed ASAP... Even the surgeon who performed the op said he would not do it until I had consumed 3 weeks of oral iodine as he could kill me if he cut into the thyroid as is.. Turns out the anti thyroid medication would never have worked for me and indeed was making me more ill as it was not getting in to my system... I blame my gp for insisting I just get on with it... And the lack of information the consultants obviously didn't have, 😠 sorry this is a long post but I can completely understand it, and thank you for posting it... ❤️❤️❤️❤️
We on health forums often get stick from the formal medicine world for the information we discuss. And sometimes we get things wrong!
But time and again we have had hyperthyroid members having major issues in getting diagnosed and treated. And reactions to anti-thyroid medications have figured prominently. Time and again, there have been threads consisting almost entirely of advice to go, urgently, and be seen by someone who can do the necessary tests. Rarely have members been advised individually that they need to take reactions seriously and urgently.
Yes, the Patient Information Leaflets do say that, more or less. But when people are very ill is quite possibly when they find it most difficult to read and take in this sort of information.
Hi NIKEGIRLAnd in no way have any of these people apologised for their incompetence, I saw the same gp 2 weeks after leaving hospital after thyroid storm, I tried to tell him he was to blame for the state I was in.. He brushed over this then had the nerve to say.. "do you realise just how ill you are" humm yes I do doctor you put me here!! He as Been quiet ever since.. But I'm seeing the practice manager about my results buried within my records (thyroiditis) out of range TSH... But this surgery are doing it again.. I have had raised calcium and pth.. The endo wrote and said it could possibly be hyperparathiyroidism, I've had more raised calcium and pth.. But they got one bk as normal.. Now they are saying I don't have it.. Primary hyperparathiyroidism does not work like that so I'm fighting them AGAIN its so annoying when the bloods say you have it, then One normal and they shove you out of the door.. I was diagnosed in 2004 with early onset of primary hyperparathiyroidism again they got one blood test bk and that was that.. I now have, ostiopein in my spine, calcification in joints, kidney stones passed, gal stones, I'm peeing loads thirsty, have bad bone pain., tremors, palpitations, exshastion ect.. And they are still dragging their feet... Unbelievable 😠😠😠😠
The care isn’t there. I was going to say quality of care but there is no quality in your care. I’m sorry u have had an absolute shit time of it but saying sorry doesn’t cut it, it really doesn’t.
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