Still feel rubbish :(

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Hi all, I got told I have over active thyroid, beginning of July, was put on 40mg carbimolae and 80mg propranolol, spoke to the doctor yesterday and he said thyroid has corrected as it is now 15! Which is great, he also told me I have Graves' disease, could this be the reason why I still feel like rubbish, I am constatly tired, sweating and just no energy, in the beginning I was starting to feel myself again but these past two weeks have been a nightmare, I havecried constantly for a couple of days and I am at my wits end, no reason just real tears like someone has past away, I don't know what I want from this forum, maybe just some reassurance, I have the hospital at the end of August, thanks for reading.

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  • Posted

    Why not just have the thyroid removed? Be done with it. Not sure what you mean by "I have the hospital......"
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  • Posted

    Hi Dawnemma,

    This is why I urge all patients to ask for a copy of their actual lab report on blood tests done every time they are done and to read all about and learn all about their their particular disease and symptoms. If a doc told me my thyroid has corrected as it is now 15, I would say "what are the other values?" Because my T4 and T3 corrected immediately when I was put on 10 mg of methimazole but my TSH did not rise at all and it was at less than 0.01 when it should be a minimum of 0.40 at least by my doc's lab standards. So my symptoms were managed but my disease was not. I still had thyroid antibodies and one of three of my thyroid lab tests was still not normal. Doctors are not Gods. They are educated mortals. They have to get educated on a lot more medical stuff than you do but you can get educated on your particular problem. People who have had hyperthyroidism values that require 40 mg of Carb and 80 mg of Propranolol have lost a lot of carnitine from their muscles and this needs to be replaced. You can Google the article by Dr. Salvatore Benvenga who documented this in a research study he did. You can ask for a Free and Total Carnitine blood test to document this and if it shows you are canitine deficient as I am sure it will and as it did in my case, you can start taking Carnitine supplements you get from the health food store which will address the problem of muscle weakness. Secondly, you probably no longer need the Propranol at least not at that dose. This is probably making you feel depressed. It is very necessary to control symptoms until all tests are done for a diagnosis but once you start on Carbimazole, it is usually not needed or at the very least not needed at that dosage. Tell your doc at your next visit how you feel and ask him if you can reduce or eliniate the Propranolol. Please keep us posted on how you are doing after your next doc's visit.

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    • Posted

      Thanks linda187, this is all new and I don't understand a lot of the values, doctor only just told me yesterday what they were and I had the first blood test July 8th! Need to ask them more questions! 
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    • Posted

      Absolutely Dawnemma ask a lot of questions. Get educated on all your options. You have taken a first step by posting to this Board. When you say you felt better the first couple of weeks you started the Carbimazole and then felt worse, that makes me think it is the Propranolol that is making you feel worse. It is needed before you are diagnosied and before you start on Carbimazole but after the Carbimazole starts to work, keeping the same dose of Propranol might be what is making you feel depressed. When I take even a half a dose of Propranol if I have a fast heartbeat, then my first blood pressure measurement after that is low, last night it was 111/46 when my blood pressure normally runs 135/70. So I tihnk this might be the cause of your problem. You could call your doc and ask him before your Sept appointment if you can lower the Propranol and by how much.
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  • Posted

    I have the hospital to see the specialist as I have only seen a local doctor, I am really none the wiser about all this as I only got told about the Graves' disease over the phone
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    • Posted

      There are a lot of books on Graves Disease that are understable to the lay person as well as a lot of information on the Internet. The tests commonly used to measure the thyroid gland's function are Thyroid Stimulating Hormone (TSH), Free T4 and Free T3. Those are the 3 that are usually done, although some doctors will not order all three. They always have for me though or I would ask for it to be done. Your values are listed and right beside them are the normal values from that test listed from the lowest value to the highest value as a range of normal for that particular test. The disease is treated by medication such as carbimazole or methimazole, sometimes beta blockers like Propranolol before diagnosis and many if not most physicians will push for either radioactive destruction of the thyroid gland or surgical removal of the thyroid gland and then giving thyroid hormone replacement. Some people who have had radiation are happy with the results but I would say the majority are not. As well, sometimes eye disease from eye irritation to bulging and protrusion of the eyeball and swelling goes along with Graves disease and if you have eye disease, radiation will make it worse. Many patients do not feel normal on Synthroid, which is mostly prescribed for thyroid replacement.
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  • Posted

    Hi I started feeling like that when I went hypo, it is very easy for to go the other way.  

    I also just want to mention my consultant can not understand why I am still feeling just dreadful with my levels being controlled by 40mg Carbimazole & 100mg levothyroxine.  My tsh is 0.09, t4 23.4 t3 6.4 .  He has started looking into iodine uptake and this can be a reason for not feeling great.  Has anyone else had an iodine uptake test?  

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    • Posted

      I have only had blood tests, seeing specialist at end of month so hopefully will get some answers, I was signed of work for a month and supposed to go back on Thursday 
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    • Posted

      Hi Linda,  I am really considering the RAI or surgery (I don't want either!) however I have now got an ovarian cyst with raised tumour markers which I do believe is due to the graves (so does consultant )  and  really worried about the increased risk of ovarian cancer - do you know anything about this?. I just don't know what to do for the best.  Also what impact does low TSH level have on the body?  Many Thanks Emma 
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    • Posted

      Hi Emma.... Your TSH is low ... What do you mean by dreadful! What are your symptoms ?? My GP says you can still feel awful even after your levels are normal for few months sad 

      How long have you been on medication?

      Audrey 

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    • Posted

      Go to Google and search "Hyperthyroidism /increases Ovarian Cancer Risk - Thyroid Disease." Hyperthryoidism can be treated with antithyroid drugs, RAI or Surgery and thyroid replacement. All of those methods reduce the hyperthyroidism. The latter two make you just the opposite - hypothyroid whereas the first one can make you normal thyroid as well as hypothyroid. As far as I know, just because you have RAI or surgery does not mean you will lose your thyroid antibodies and that leads me to question what will they attack next? Also, I would wonder whether any of the radiation if you had RAI would travel elsewhere in your body. The article suggests " If you are hyperthyroid, or if you have any risk factors for ovarian cancer, you should consider asking your doctor for the CA-125 test, a blood test that can help identify those at increased risk for ovarian cancer, as well as a transvaginal ultrasound." Before making a decision about RAI or surgery, I would have those two tests done.

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    • Posted

      Emma as far as feeling dreadful, I would add L-Carnitine and vitamin D to my treatment regimen. Carnitine is an amino acid that is lost from muscles in hyperthryoidism and needs to be replaced. You can measure carnitine deficiency by having a Total and Free Carnitine blood test done and you can also measure vitamin D deficiency with a blood test. I felt better when I added this to my treatment regimen.
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    • Posted

      Hi I have been on meds since apr 2013.  I am just fragile and tired, don't want to socialise and unable to work because of bouts of high blood pressure.  I just can't do what I used to and I was a very active and switched on person. Just wondered if the tsh level can effect you like this.x
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