Symptons of hyperthyroidism, nodular goiter

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Hi

Since last year I have suffered from dizziness and a feeling of going to faint, although I never have.

It came to a head in January after feeling unwell over Christmas. At the start it was the dizziness and palpitations so checked my heart and all well. I was diagnosed with over active thyroid and B12 and folic acid defficiency (these two now sorted)

They started me on propanalol for the palpitations but had a nasty reaction to it so couldnt take.

Eventually these put me on 20mg of carbimazole which I was taking for about 3 weeks...and then it attacked my liver function and again was very unwell.

So basically I have been off work since beginning of January with no medication. I am asking for support to see if anyone has been through the same and come out of the other side

I have horrible palpitations, almost racking my teeth sometimes. Great anxiety (not driven for quite some time now!) tinnitis in my left ear. Great lethargy, weight loss. I have had a scan of my thyroid and I have a goiter with nodules...or lumps and bumps as it was put.(lymph nodes were fine) Over the last 10 days my neck and upper chest seem tight, swollen and my neck around my thyroid throbs and can be painful. I do have an endocrinologist appointment this week and hope that they seriously just put me through the operation so I can start to move forward. Has anyone had the job lot of symptons? also how long to recover from the operation as desperate to get back to work and feeling 'normal' rather than feeling pathetic and a recluse having to be ferried around when I have appointments

Thanks for reading and really look forward to hearing from someone that has been through this and moved on to be normal! lol :-)

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  • Posted

    Sorry to hear you are in such a bad place ! Can I advise you not to rush in to RAI or surgery. The outcomes are unpredictable and being hypo comes with it's own set of problems ! Don't believe it when you are told that it's simple to replace with synthetic hormone. Read the posts here and on thyroid UK - it's not always so simple !!!

    My advice would be to try for a definite diagnosis by a full antibody panel. Is it Graves - Hashimotos ( starts hyper) thyroiditis, multi nodular goiter or what exactly ???? Treatment outcomes depend on an accurate diagnosis. I have problems with propanalol but can take Nebilet which is a once a day dose. I was on 2.5 mg which worked for me when I was hyper with dreadful heart issues. I had a disastrous reaction to Carb too but took it again a year later and was fine. Also consider high dose 4500mg acetyl carnitine, that's all I take now. Buy it in health food shop or on eBay. Works like a beta blocker without the side effects. With careful diet and carnitine I am well and medication free with only occasional minor symptoms.

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    • Posted

      Thank you for your response, I will raise what you have advised to the endocrinologist on Thursday to see what they come up with.  My friend had her thryoid removed surgically at the end of last year (but she only had the lethargy and sweatiness) and apart from tiredness due to the thryroxin levels she is doing well.  I am at the point of asking them to rip it out but will definitely pose the points and advise that you have raised.  Graves has not been mentioned. It started as being hyper and then the goiter and 'lumps and bumps' came into play.  I will get the full feed back of the scan on Thursday

      Many thanks again

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    • Posted

      Susan, I would agree with linnet.  Do not rush into RAI or surgery until you have done your own research.    I understand your wanting relief, but I think you would just be exchanging one set of problems for another. There have been documented studies that L-carnitine improves hyperthyroid symptoms.  The one I read was by Dr. Salvatore Benvenga from Italy.  You can search for it on Google. I had a very mild case of Graves and started on 10 mg of Tapazole which arrested my rapid heart rate and normalized by T3 and T4 but not my TSH result for 2 years.  Then I read the article and added the L-carnitine.  It helped my antibodies disappear.  My TSH really rose when I added acetyl-L-carnitine but I am now finding I may have another disorder which makes it difficult for me to take the Acetyl-L-carnitine so I will probably switch back to the regular once I have more information from recent blood tests.  Most endocrinologists will not endorse your taking L-carnitine because unfortunately it is not considered regular standard of care for hyperthyroidism although if you read the posts on this board, you will find the majority of patients have responded very positively to it in doses of 3 grams or less, it is quite safe to take as it is an amino acid that is found naturally in the body.  Also avoid foods with aspartame in them as this is know to cause or worsen hyperthyroidism.

      Good luck to you and keep us posted.  

       

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    • Posted

      Brilliant Linda, I will look into that and get googling. Many thanks for your response and will keep looking on the site.  Even just knowing that other people are going through /have been through the same is supportive
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    • Posted

      Hi again.  Looking at the L-carnitine on Holland and Barrett.  500mg tablets.  I am presuming therefore you take...6 of these tablets ..a day?
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    • Posted

      Six 500 mg tablets will give you 3,000 mg a day.  Some people find at that dose, however, that they have a lot of stomach acid.  I started on 500 mg of regular L-carnitine and then worked up to 3,000 mg by taking 2,000 mg of regular L-Carnitine and 1,000 mg of Acetyl-L-carnitine and that raised my TSH to 0.78.  More recently I have only been taking 250 mg to 500 mg of Acetyl-L-carnitine to keep my TSH in the normal range.
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    • Posted

      If you want to take 3,000 mg a day, you would have to take 6 tablets a day. It is always a good idea to start with 1 tablet and notice how you feel and then add more slowly.  Linnet takes the Acetyl-L-Carnitine.  There is a difference between the two - Acetyl-L-Carnitine and regular L-Carnitine.  Do some research on the net about it.  In myself, the Acetyl-L-carnitine combined with the Tapazole, helped the Tapazole get into the cells better.  You have to find what works for you.
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    • Posted

      how are you doingg on the acetyl?i have started 3 months ago,stopped my methimazole which was giving me blurry vision,i seem fine so far,a few weak attacks but nothing serious.

      i take 1000mg 3x day

      my dr was no help,refused to see me when i told him i stopped meds.

       

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  • Posted

    Hi Susan,

    My daughter (18yr) was diagnosed with Graves about 4 years ago.  She has gone through so many ups and downs that at the beginning of this year, we were seriously considering RAI (even though we know that is not the answer).  However, we stumbled upon Linda's post about L-Carnitine and decided to give it a try... after taking it for several weeks, her lab results finally moved closer to the range.  Linda suggested to increase the dosage of acetyl L-carnitine and we did, and since then, she has had perfect lab tests. We were able to achieve this outcome, while reducing Tapazole..which is pretty amazing.  Your doc will likely not be very receptive to this , but having read countless hours of research on this topic, I would encourage you to consider all natural options before making a finite decision.  All the best.

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    • Posted

      Thanks for that - I see the endocrinologist tomorrow and have made notes to take in.  My L-Carnitine is on its way, should have got some acetyl at the same time.

      What concerns me is that not been offered alternatives to Propranalol or Carb after being allergic to them when obviously there are other products available

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  • Posted

    When I started I was totally desperate (28th Jan) My bloods were in normal range although my TSH was at the very bottom of normal and T3 right at the top. T4 was mid range. My blood pressure was 240/112 my pulse was going from 70 (fast for me/normally 60) to 102. I had very typical hyper symptoms, which I was very familiar with !! GP and Endo were determined it was not thyroid this time cause blood fine. I self medicated on low dose of Carb for a week and acetyl carnitine at 4500 mg. I dropped the carb and never looked back. My BP is now 120/60 pulse 60-62. They wanted to load me with BP meds, stations, warfarin etc although every heart scan, ECG etc said my heart was fine. Cardio guy said it was thyroid but no one would listen, despite my previous hyper history !!! My GP removed me cause I would not obey her. I am now very well, it's the first thing everyone says to me. Do not rely on Doctors, it's your health and they make too many mistakes !!
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    • Posted

      I am now very confused, but very grateful for the responses. My bp has been stable all the way through, my heart count fast but regular.... Didnt think so earlier tonight, felt very unwell. Am just very grateful to speak to people that have been through it and are feeling better. I am like you were linnet2012, desperate. I am going to phone docs in morning as want print outs of all results. Want to prepare for endocrinologist appt on Thursday. Last October I took an Austin Martin round a speed track, I can't even think about driving 200 yards in my nice new car, it makes me feel pathetic and not a lot of people understand the anxiety and tremors...oh to be normal...well ish
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    • Posted

      TSH stands for thryoid stimulating hormone.  The normal values for this vary in different laboratories but generally they are anywhere between 0.40 to 5.00 as the range of so-called normal.  The lower the figure, that is below 0.40,  you are hyperthyroid.  Above 5.0, you are hypothyroid.  The other two tests are free T3 (in the lab my doctor uses, normal varies between  2.6 to 5.7) and free T4 (normal between 10 and 20).  For these tests it is just the opposite, anything below the lowest value is  hypothyroidism and anything above the highest value is hyperthyroid.
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    • Posted

      Hi Linda

      I asked the doctors for my test results

      My TSH is less that 0.01mU/L

      T4 is 14.9

      no T3 results

      Then another sheet with throid function test, with no real info on it.  Will have to see what the endo says tomorrow

       

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    • Posted

      Don't know what the normal values are for your lab for T4 so can't comment on that.  But definitely your TSH indicates hyperthyroidism.  Also your symptoms indicate hyperthyroidism.  I am sure your endocrinologist will do a full thyroid panel on you as well as other tests perhaps.
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    • Posted

      I had a TSH of less than 0.01 for two years even though I was on Tapazole, the drug used to treat hyperthyroidism.  (If you are in Britain, the same medication is called Carbimazole).  Then I bought some regular L-carnitine, 500 mg, took one tablet a day and my TSH rose to .05.  So what you have ordered is good to start.  I would start slowly and see how you feel and then increase the dose.  My Graves disease was triggered by stress at work.  If you have any stressors, it is also good to identify them and get some therapy, either in the form of therapy (a professional counsellor to talk to, yoga, mindfulness meditation etc.  The more proactive you are, the better the end result.

       

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    • Posted

      Thanks for your story re conflicting opinions of senior doctors and sorry the way you were treated by gp, although you had a professional opinion from the cardiac surgeon which needed  and hope was bought to that gp's attention to be be acknowledged in your records, and for your new Gp's attention.  I have been throu similar.
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