Carbimazole Titration Treatment / latest blood results

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Diagnosed with Hyper/Graves 3 years ago.  2 years on Block & Replace Treatment with failed remission. Both ATD's stopped for a couple of weeks (40 mgs Carb 75 mcgs Levo) before commencing Titration  Now on Carbimazole Titration Treatment (since beginning April).  Started on 10 mgs which produced the following blood results:-

10th May

TSH  13.21  (0.34 - 5.6)    Above Range

FT4   10.4    (7.5 - 21.1)

FT3     5.6    (3.0 - 5.0)      Above Range

Due to over-medication Endo then lowered dose of Carb to 5 mgs which produced the following blood results:-

31st May

TSH  4.12

FT4   14.1

FT3    4.82

All within the "medical" range

Latest blood result 23rd June:-

TSH   0.16         Below Range

FT4    15.9     

No FT3 

Over the last few weeks I have had extreme breathlessness upon any exertion which has become progressively worse over the last couple of weeks and in turn that causes anxiety etc.  Also feeling extremely cold - which usually happens when I have swung from HypeR to HypO and yet TSH at 0.16 is somewhat HypeR.  Very confusing.

I can see from the results that 10 mgs Carbimazole is too high and 5 mgs is too low.

Comments/advice most welcome.

Christine

 

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  • Posted

    I empathise as this has been happening to me since March 2013. It probably won't get any better. I'm going for a total thyroidectomy as soon as I can. I'd have RAI but have thyroid eye disease. I've tried everything to help myself but nothing works. Carbimazole is making my white cells reduce. I know I will go hypo but it's easier to treat than being hyper as thyroxine is a safer alternative. Sorry I can't offer more positive advice.

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    • Posted

      Hi Sue1247, sorry to hear that your white blood cells are being affected by Carbimazole.  I have been on it too since 2013 and I am very fortunate in that it does not (so far) affect my cells, I have a blood count done on a regular basis and so far so good.  I guess it's the luck of the draw, some patients on this forum and other forums have been taking Carbimazole for over 20 years and continue to do so without any problems and yet some can't tolerate it at all due to the itching it can cause.  I'm sorry that we even find ourselves in this situation with this horrendous disease and have to make decisions like RAI or surgery at an attempt to feel "normal".  My life has certainly been turned upside down since 2013, neither the GP nor Endo cared to mention just how long this goes on for and there was I thinking I'd just take a course of tablets (Carbimazole) for a few weeks, maybe months and hey presto I'd be back to normal !! Although I am depressed and oh so weary from it all because some of the symptoms have never disappeared completely, I am still refusing RAI which my Endo has been trying to push me into.  I'm going to hold out for as long as I can but I wish you all the very best.

      Christine

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    • Posted

      I do have other health issues which is probably why I've a problem with my white cells. I also became iron deficient due to the Graves. I went into remission once but had a very bad kidney stone and sepsis that set it off again. Surgery is a last resort but I don't want to be up and down on carbimazole for the rest of my life. I'd like to feel relatively well again and haven't for years. s.

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    • Posted

      I know excatly where you are coming from about wanting to feel relatively well again !  In 2004 I had a bowel cancer and had a tumour removed, took well over a year just to recover from the op as well as suffering from post operative trauma.  And just after I got my 5 years "all clear" having had yearly CT scans and colonoscopies for 5 years, I was diagnosed with Spinal Stenosis another extremely painful trauma - which could have been  the trigger for the onset of this monster Graves.

      Christine

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    • Posted

      There's always a trigger. I think it was my husband dying and then my father. Now any stress makes me overactive again. It's a bugger.

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    • Posted

      Again, I know exactly where you are coming from - my father died 16 months ago and I flipped and couldn't cope, I was bed ridden for 2 weeks and on Diazapan as well as the ATD's.  Like you say any stress at all and I'm floored but who has a life without any stress ?

      Christine

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    • Posted

      Totally agree. Stress is part of life but its how we deal with it. I can't go on like this any more but I sincerely hope you can get yours stable.. If not don't hesitate to seek a permanent solution. Life is really too short to spend it feeling awful. Hypo is easier to control and the only reaction to thyroxine is if the fillers and preservatives react. They have another version if that's the case. I'm going to trust my consultant for once who says that if I did go into remission again there's a 95% chance of it coming back.

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    • Posted

      Sorry to hijack your postings but I wondered if you have any painful/throbbing joints or muscle stiffness, burning , tingling or numbness in your buttocks, thighs , legs and/or feet.

      ​TIA

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  • Posted

    Patients with normal thyroid function show some fluctuation of their TSH and FT4 and FT3 values as the body tries to maintain the required level of thyroxine. This 'dynamic balance' is disturbed in patients with Graves disease by the presence of thyroid stimulating (TS) antibodies. These can trigger the production of excess thyroxine that cannot be suppressed by our body's control mechanism (that is using the TSH level as a 'thermostat'.)

    Doctors are using the block and replace therapy to suppress the production of thyroxine using Carbimazole and supplement Levothyroxine so that patients do not become hypo. This is all done in the hope that at a later time the level of thyroid stimulating antibodies returns to a normal level. 

    It is possible that you are hypothyroid at some time and then again hyper depending on the actual level of Thyroxine, Carbimazole, TSH and TS antibodies.  

    The substance that causes the symptoms of hyperthyroidism is T3 the active form of thyroxine.  Many times you might be able to tell well ahead of any blood test if your thyroxine level is high (and you are feeling agitated and your heart is beating fast) or low (and you are feeling cold and sluggish). 

    Your goal should be to gradually lower the dose of Carbimazole. So if 10mg is too much then you could try to take 5mg and rather lower the dose of Levothyroxine. 

    It is best to discuss this with your endocrinologist. It is sometimes frustrating and some doctors are better at listening then others.

     

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    • Posted

      Hi danR, many thanks for replying to my post.  However, I am NOT now taking any Levo Thyroxine - I stopped the B & R treatment at the end of March and began Carbimazole ONLY titration treatment at the beginning of April and have so far been titrated down from taking 10 mgs Carbimazole to 5 mgs Carbimazole resulting in the last blood test result on 23rd June.

      Christine

       

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    • Posted

      Maybe I should mention that (after reading about it on this forum) I started taking Acetyl L-Carnitine 500mg per day. I have been doing so for more than a year and at the moment I am down to 2.5mg Carbimazole per day. 

       

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    • Posted

      Before reducing the dose of Carbimazole from 5mg to 2.5 mg (back in April) I did a private blood test to see if my TSH receptor antibody level is within normal range.

      I can understand why doctors refrain from including this test during a routine thyroid check-up (probably a cost factor) but if the TSH receptor antibody level is still high the thyroxine level with rise as soon as the dose of Carbimazole is reduced.  

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    • Posted

      have you ask your Dr for any deficiencies your body lack. see if they could test it.  I am now at a stable dosage after finding out about those deficiencies and corrected them.  Mainly are VIT D, magnesium, carnitines.  
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    • Posted

      are you still taking Acetyl L car even with 2.5mg carbimazole?  I took acetyl l car and gave me the shakes like a hyper.  so im taking regular L -car instead.  my total and free carnitine are normal but my ester carnitine is low. I dont understand it and im still looking for a doctor to explain to me about this ester's about.  somwthing to do with brain..neurology stuff.. but my GP doc and endo dont want to comment about it

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    • Posted

      Hi danR, yes I have read about Acetyl L Carnitine and L Carnitine and also seen the many comments from Linda who highly recommends it for Graves BUT she also says that you have to be very very careful when taking the Acetyl L-Carnitine so that put me off but I bought the regular L-Carnitine (2 x large jars) and then read that Carnitine should NOT be taken by HypO patients and as I swing from HypeR to HypO I decided it would be better if I didn't take that either !?  It's a mine field, just so much information to absorb and sometimes too much scary information.  I did get my GP to test for some Vitamin deficiencies and Vit D was the only one I was low in and have had that boosted and take a maintenance dose now.

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