Thanks for looking. Got blood test results today. GP was happy with thyroid bloods but he wasn’t bothered about the CBC. I’ve been feeling rather unwell and can’t quite work out if it’s the carbimazole making me unwell or it’s psychological. I was taking 5mg of carbimazole three times a day between 3 and 29 September 2020.
TSH <0.001 always, no suprises there
T4 on 03/09/2020 was 59.0
T4 on 29/09/2020 was 26.0
T4 range 10-24
T3 on 03/09/2020 was 37.5
T3 on 29/09/20202 was 12.7
T3 range 2.0-6.0
WBC 24/09/2020 was 6.60
WBC 29/09/2020 was 3.90
WBC range 4.0-11.0
In 5 days my WBC dropped to just under range. Dr not bothered by this but I am.
Neutrophils 24/09/2020 was 3.80
Neutrophils 29/09/20202 was 1.90
Neutrophils range 1.9-7.50
This is not out of range but fell by half in 5 days. That can’t be Ok? But I don’t know.
My ferritin is 213 with upper range being 200. So it’s just higher than the range but I can’t help but wonder that the Graves’ disease is hiding anaemia because my MCH is always 26 then 27 then 26 and the haematology range is 27-33.
My Haemoglobin has slowing fallen and is now 130. Range 115-155
I generally don’t feel that well. Tired. I’ve lost my appetite but I do wonder if that’s because the Graves’ disease is closer to being in the ranges. I’ve got a few bruises. Legs feel like lead. We have agreed to do one 5mg tablet morning and evening. I don’t know if what I am experiencing is normal? Any thoughts?
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I think it reads about right in that the AT drug has done it's job and your T3 and T4 , have reduced down and it's logical to now drop the AT dose by a third as you are very close to being back down and into range.
Obviously these are just numbers on a computer screen and your actual recovery from this first phase of Graves may take you a lot longer, so please don't expect too much too soon from yourself as it may well feel as though you have been hit by a wrecking ball.
Maintain your core strength with optimal vitamins and minerals and take time to recover :
I don't know enough to say anything about the high ferritin - maybe ask your doctor ?
Take care, look after yourself, you're going in the right direction :
Morning. I was taking 3 tablets of carbimazole but i managed to convince to the GP to do 10mg a day. I think 15mg for another 4 weeks would be too much and drive the T4 too low. I just don’t know what is going on with the white blood count and if it’s the drugs making me feel ill. I hope u r well, always and thank you
Well - I didn't know anything when diagnosed back in 2003 and just followed doctors orders. - I do remember however starting off with a comment from the doctor saying that my white blood count was only 4 - and that Carbimazole might lower it, but wasn't told and didn't ask of the implications.
I think you're right to reduce down the AT drug - you're coming in to land in range and so to ease off on the blocking drugs is logical.
It's a fine balance, and a balancing act - has there been any discussions on adding in some T4 - Levothyroxine if your levels drop too far in the range ?
You're probably looking at a period of around 15 months or so on the AT drug in the hope that during this time your body recovers and the antibodies calm down which then offers you the possibility of remission with this phase just being a " one off " .
Without the AT drugs you had more debilitating symptoms than you have now - you are now living through the consequences of those extremely high levels of T3 and T4 that you had initially and that sent you to the doctor:
You need the AT drugs at the lowest possible levels to titrate your over production of thyroid hormones caused by your antibodies probably " sitting on " your TSH and driving down your TSH which in turn drives up the metabolism to those uncomfortable levels you once experienced.
In Graves Disease we can have antibodies that " sit on " and " control " our TSH - it can take time for these antibodies to disappear - if they ever do :
In Graves Disease the TSH is the least reliable measure of anything because of this interaction with the antibodies, which is why you must always be monitored and dosed on T3 and T4 blood test results :
I know that is happening now, but when, if, anything changes, it's essential that T3 and T4 are monitored and not a TSH :
In the UK in primary care irrespective of your reason of becoming hypothyroid it seems you are monitored on only a TSH blood test which is how I ended up becoming so unwell and ultimately had to pay privately for the correct blood tests.
Hi. Good to hear u r well. That all makes sense. I understand what you have said. It is going to be a fine balance. There has been talk of taking levithyroxine to do block and replace. I’ll have to see where my bloods will go in the next 4 weeks. I worry Taking 10mg a day will drive my T4 under the range. I wonder what would happen if I took 5mg of carbimazole for the next 4 weeks and what that would do to my bloods?
Well, just go slow and steady - you have just dropped the AT drug from 15 to 10 daily haven't you ?
So see how you go first on this lower dose over the next 4 weeks - slowly taking the brake/ block off and easing back, merging back in your own thyroid hormone production.
No point worrying or second guessing, as if your own levels keep falling - Levothyroxine will be introduced to top you up while your own thyroid recovers it's normal production and rhythm.
Just out of interest - have your antibodies been checked again ?
I noticed your ferritin is highish as is mine and has been for a few years. One of the admins gave me a link about Graves' sufferers having this so I will try and find it for you. Also when I asked my GP about mine which is over 300 he didn't seem concerned and told me the time to worry is when it reaches 800 because I might have to give blood then. Just to add my TSH stayed suppressed even when my levels were in range because it takes a long time to rise and lags behind. Did you ask about changing your medication because of the side effects you are experiencing?
Hi. I hope u r well. GP didn’t even mention changing drugs. He’s happy because the blood is trending where he wants it. I wasn’t happy. I just feel unwell and it makes drug compliance harder. I just feel trapped. No options. Take the drugs fell u well and work through it or don’t take the drugs and get very unwell. Big sigh. He did not mention PTU. I’m pretty sure I am anaemic and that could be contributing to feeling unwell. My Haemoglobin is on the low end like the bottom numbers. I have thought of adding iron tablets to see whether It will go up. Thank you for the link. I do know with Graves that calcium gets elevated as well. GP did say TSH will be last but he is only looking at T4 and T3. T4 is nearly thee and T3 has a way to go. I wish they had done antibody tests but I suspect that will be March next year when I next see the Endo or if I get unwell and see him sooner. Thank you again. I hope this finds you well
Hi, I would be pleased with those results. It shows that the Carbimazole is working. You are obviously still hyperthyroid which may explain why you do not feel completely well yet. My WBC did dip slightly below range when I first started treatment, but recovered afterwards. You just need to keep an eye on it, maybe get it measured next time you go for a blood test to reassure yourself that it has not continued falling.
Hi. That’s reassuring to know someone else had their WBC drop. Just have to keep going. Thanks for your insight. It helps to know you are not alone. Have a great day
B12 top end of range is 600. Mine was 877. I’m just not sure if I’m anemic. Ferritin is over the range at 213 and top end of range is 200 but my MCH is always low at 26. Range starts at 27-33. I wonder if the Graves is throwing off the real levels of iron? It’s just hard to know. Thank you. You do amazing work for a lot of people
Hi. B12 is over the top of the range. Folate came in ok. Vitamin D was 54 in August so I’m still taking vitamin D although I don’t know where I am now in the range. Dr said stop taking it. Medical herbalist and I agreed to continue taking. 54 is not ok for vitamin D. Thank you
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