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GP not interested since I paid for private consultation - advice? 😕

Posted , 4 users are following.

d5cou
d5cou

My story started in Sept 2013 when I had what I thought was a bad bout of flu...my GP refused to give antibiotics and my symptoms went on for weeks... My GP is not known for showing much concern, and the standard reply to most complaints is 'go home, take paracetamol and rest'.  After 2 more visits,  I went back to the GP in Dec 13, she finally did a general blood test which showed my tsh level at less than 0.01, at this point she agreed that there was a problem and prescribed 20mg carbimazole. Nothing was explained, I read about carbimazole and decided I didn't want to take it.  For the next six months I tried natural remedies but it didn't work for me.  I decided to use my private health cover from my work to see a specialist endo.  He wrote to my GP in August 14 when my tsh was less than 0.01, T4 17.5 and T3 6.2 at the upper limit of normal, my TPO antibodies are negative, TSH receptor antibody level 2.1.  The Endo diagnosed Sub-clinical hyperthyroidism but is treating me for Graves as it is in my family.  He advised my GP to start me on a Block and Replace treatment, 40mg Carbimazole daily for a month, then when my T3 &T4 levels start to come down they are to start me on 100mcgs of Thyroxine for 9 months - he wrote that I 'should then be asymptomatic and with no requirement for regular blood tests until after discontinuation of both treatments in July of next year'.  I am taking 500mg of Acetyl L-Carnitine, 1000mgs L-Carnitine and 1000mgs vit D.  I am due to get my blood results this week after taking Carbimazole 40mgs for 6 weeks, I went to my GP when I first started taking Carbimazole 40mgs as for the first week I felt dreadful, she said that she is sticking to the Endos treatment plan and if I have any questions I'm to go back to him.  I then asked the receptionist for a print of my last six months results and the GP has recorded on my notes 'DEMAND TREATMENT'.  I only went to the Specialist as I felt his opinion would give me the confidence I needed to proceed with treatment, but now my GP has wiped her hands of me!  I can't afford to keep seeing the private endo as my health cover only covered my initial consultation... Should I consider changing my GP? Or just ride it out for the next 9 months?

0 likes, 15 replies

15 Replies

  • d5cou
    d5cou

    Posted

    I've just noticed my TSH antibody receptor results 2.1 also have a note saying that The assay detects Both blocking and stimulating antibodies.... What does this mean?
  • linda187
    linda187 d5cou

    Posted

    Hi.  I definitely think you should change your GP.  Sorry I cannot answer the question about the antibodies.  I have a concern though that you are taking the carnitines on this process.  While I personally am not familiar with block and replace, I am familiar with the Carnitines and I can tell you they are going to lower your thyroid hormones big time.  They will multiply the effect of the carbimazole at least double the effect of it so if you are on a block and replace program I would only follow your doc's advice on taking what they told you to and avoid the carnitines.
  • dambudzo
    dambudzo d5cou

    Posted

    i thinkthat you are entitiled to get a second opinion, which is what you did.

    if you look online there might be an NHS patient charter or something similar which outlines the rights of a patient.

    check what the wording is and see how that fits in with your situation.

    if your GP is still unwilling to cooperate with you then i think that you'll be best changing to a different GP.

    hope it gets sorted.

  • d5cou
    d5cou

    Posted

    @linda187 that's good to know, I've been taking them for a couple of months, is it safe to stop them straightway? I only started taking them as so many people on the forum have been saying that it helps. I will be receiving my latest blood results tomorrow so that should show if there has been any significant change... once the thyroxine has been prescribed I think I will look to change GP practice - thanks for the advice both 😊
  • linda187
    linda187 d5cou

    Posted

    You can discontinue the Acetyl-L-Carnitine totally. The Acetyl-L-Carnitine is the one that really doubles the effects of the Carbimazole. The regular L-Carnitine does also but to a much lesser extent and you can safely stop it also. If you feel better on it however, 500 mg of regular L-Carnitine is not going to cause much of a change in your values but will help muscle weakness if you have it. I would imagine when you get the results of your tests now, your blood results will definitely be much lower for T3 and T4 and your TSH will have risen. It sounds like you have not been feeling good since you started on the 40 mg of Carbimazole. My experience has been with Graves disease only treated by Carbimazole only to block some of the excessive thyroid hormones and normalizing the thyroid test values. What often happens in this case and in my case is that the T3 and T4 totally normalize but the TSH stays at less than 0.01. In this case, it is then good to add the Acetyl-L-Carnitine because it dramatically raises the TSH along with lowering the T3 and T4. It is quite a balancing act though and requires frequent blood test monitoring at least monthly and adjustment of Carbimazole and the Carnitines dosages to keep the values within the normal range. All my blood tests have totally normalized though they are more towards the hypo side but still within the range of normal.
  • linda187
    linda187 d5cou

    Posted

    Just to add, I have stopped the Carnitines now because my values are in the lower side of the normal range and am on only 2.5 mg of Methimazole (similar to Carbimazole in your country) and hopefully if my values stay where they are, my endo will discontinue the Methimazole when I see him in November.
    • d5cou
      d5cou linda187

      Posted

      Thanks so much Linda for taking the time to reply, my gp is not interested in monitoring my blood levels until after the 9 months treatment period, so I would have no way to monitor if the carnitines need adjustments, I think it's probably safer to cut out the acetyl lc right away, and see how I fair on a low dose of the lc... I have made enquiries about another local practice, but their not taking on anymore patients until next month 😫 thanks for your input, I really appreciate it! X
    • d5cou
      d5cou linda187

      Posted

      hi again Linda, I had my blood results back today, after being on Carbimazole 40mgs daily for almost six weeks, plus the carnitines, my TSH is still less than 0.01 and t3 and T4 are even higher than the last results 😫  GP can't see me till next week, im confused!  In your experience, do you think Carbimazole isn't working , or just taking a while?  It's really good to have this forum, I don't know what I'd do without it! 
    • linda187
      linda187 d5cou

      Posted

      Yes I think it does take a while. What dosage are you on for the Carnitines? Also how are you feeling now?
    • d5cou
      d5cou linda187

      Posted

      I've been taking 40mgs of Carbimazole for 6 weeks, 10,000 iu vit d, 1000mg Acetyl lc and 1000mg l-carnitine.  I've been feeling very sluggish, I've put on  4lb in a few weeks, my muscles are weak and shakey, sometimes my whole body seems to have a tremor, I get tearful and irritable, I'm tired, get the sweats occasionally... Most of my symptoms are the same since starting Carbimazole but the weight gain is a mystery!
    • linda187
      linda187 d5cou

      Posted

      You need to know your lab results since starting this regimen. That's a very high dose of Carbimazole and the addition of the Carnitines makes the Carbimazole more potent in doing its job which is to block excess thyroid hormones. Your lab results will tell you if you need to lower your dose of Carbimazole. Depending on the results, you may need to lower or even stop the Acetyl-L-Carnitine. Can you ask your doc to test your lab results? When you add Acetyl-L-Carnitine especially, you need more frequent lab tests because in a lot of people, it causes the thyroid hormones to go down rapidly. I was testing my results every 6 weeks and adjusting dosages accordingly. I am fortunate to have a GP that will do that for me. My endo was seeing me every 3 months initially and when my values improved, it was every 6 months.
    • linda187
      linda187 d5cou

      Posted

      Hi d5cou

      I read your posting again and it appears that you still have hyper symptoms aside from the weight gain and feeling sluggish which suggest hypo symptoms?? I suspect your next blood draw will show a huge difference in your values. Usually the Acetyl-L-Carnitine especially increases the body's response to Carbimazole so that you don't have to take as much of it. However, it is possible that you have antibodies to both Graves and Hashimoto's. Do you know whether antibodies were tested and if so which ones? What I have seen before in another posting on this Board is not a lot of change in TSH after 4 weeks but when Acetyl-L-carnitine was continued for 6 months there was quite a change in TSH to well over 1.00 and a drop in T3 and T4 to almost hypo values which necessitated a lowering of the dose of meds. You may find that Bugleweed, Motherwort and Melissa supplements would help to quiet the hyperness. They are herbs you can find in a Health Food Store. One of the Naturopaths in my city showed me a bottle of all three combined in one capsule.

    • d5cou
      d5cou linda187

      Posted

      Hi Linda,

      i did have my antibodies tested, my TPO antibodies came back negative, which suggests that I don't have graves or hashimotos (although I've read that 10% of patients with these conditions do recieve a negative reading) my TSH antibody receptor reading was 2.1 (with both blocking and stimulating antibodies, although I have no idea what this means!) my latest blood test came back today from last Friday's test which said that although I've been on the Carbimazole and the carnitines for six weeks my TSH remains unchanged at less than 0.01 and t4 has increased to 18.5 with the t3 still being processed... The results suggest hyper, but my symptoms are more hypo - what a merrygoround this is... I think I will carry on with the Carbimazole and carnitines, and hope that I see some improvement over the next few months - if I don't crack up in the meantime!😳

    • d5cou
      d5cou linda187

      Posted

      Hi Linda,

      i did have my antibodies tested, my TPO antibodies came back negative, which suggests that I don't have graves or hashimotos (although I've read that 10% of patients with these conditions do recieve a negative reading) my TSH antibody receptor reading was 2.1 (with both blocking and stimulating antibodies, although I have no idea what this means!) my latest blood test came back today from last Friday's test which said that although I've been on the Carbimazole and the carnitines for six weeks my TSH remains unchanged at less than 0.01 and t4 has increased to 18.5 with the t3 still being processed... The results suggest hyper, but my symptoms are more hypo - what a merrygoround this is... I think I will carry on with the Carbimazole and carnitines, and hope that I see some improvement over the next few months - if I don't crack up in the meantime!😳

    • linda187
      linda187 d5cou

      Posted

      You have a good sense of humour! I have heard of some Graves patients and non-Graves patients having both stimulating and blocking antibodies but I think it is rare. You might have had a thyroid reaction to an infection. In any case, what is helpful for recovery is watching your diet, removing gluten, aspartame and sugar from your diet, reducing stress, as well as the meds you are taking and having regular blood tests for your thyroid to keep on top of the labs. Keep us posted on how you are doing.
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