Everything is so confusing

Hi. I have been fighting my GP to investigate a suspected endocrinology issue for sometime. I was put on levothyroxin in 2013 when my thyroid levels were found to be abnormal (sorry I don't have the results). In the summer of 2016 I had what appeared to be a thyroid storm with tachycardia, sweating and hypertension. I have been getting these symptoms in a progressively worsening fashion for some years. I was admitted to A&E after I collapsed and was found to have very low TSH of less than 0.01. My T4 was normal. The doctors in A&E couldn't find anything wrong so sent me home. My GP thought I was simply over-medicated and reduced my levothyroxin.

Fast forward to December 2016 and I finally get to see an endocrinologist and she measured a TSH of 8.41mU with T4 normal.

The endo suspects that there is an issue here though and is now looking for a possible pheochromocytoma (adrenal tumour) and is also testing growth hormone and testosterone. She observed I had thickened skin, was sweating and I had a HR of 119, palpitations and a BP of 180/100 when I saw her. Any ideas hat this might mean? Could it be my pituitary (I sometimes have minor vision problems in my periphery but the Endo tested for this and it appeared normal)?

I will add that a few years ago I was told I had bipolar disorder as my moods suddenly become very erratic (literally one minute to the next I went from calm and normal to agitated and out of control). I was put on anti-psychotics, lithium and depakote for over 5 years and gained 6 stone in weight and turned into a zombie. I stopped taking all my meds 3 months ago and feel so much more human again - I can think faster, am more cheerful and don't have suicidal thoughts anymore (something which started the moment I started the drugs). The drugs never stopped any of the symptoms. I refused electro-convulsive therapy.

I also have terrible shifting muscle\joint pain in my lower limbs, mostly in my ankles but sometime knees and thighs. I also get the same pain in my wrists and fingers. My GP has ordered rheumatism tests as a precaution, however there is no redness or swelling).

There seems like there is a lot going on. I'm only 41 and have a 7 year old son. The last 6 years have been hell and my marriage has failed because of it. I have only worked for about 25% of that time as I've been far to ill to do anything. Before 2011 I was very fit, athletic, in a great job and a happy marriage. Now i have none of this.

Is there anything else I should be investigating? What could it be? Am I going to get better if the doctor finds a pheochromocytoma or a pituitary gland issue? I am determined to beat this!

Many thanks.

4 Replies

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  • By 'normal' T4, I presume you mean 'in range' T4. But, just being 'in range' does not automatically make it 'normal'. Although doctors tend to think it does. However, it's where in the range the result falls that counts. If it's right at the bottom of the range, it's not 'normal', and you will have symptoms.

    I'm not medically trained, but from all I've read, I very much doubt if you have a problem with your pituitary, because your TSH reached 8.41 when your doctor reduced your dose. Have they not considered simply increasing your dose again to see if it helps? It could just work.

    It is essential to always get a copy of your blood tests results and keep your own records. Otherwise, you cannot keep track of how you feel on what dose and how the results corresponded. You therefore have no leverage with your doctor if you want them to raise your dose - or add T3. If you live in the UK, it is your legal right to have a print-out of your results, under the 1998 Data Protection Act.

    It seems to me that it would be a good idea, to give you a base line, to get your own private tests done. You need to test :

    TSH

    FT4

    FT3

    TPOab

    TgAB

    vit D

    vit B12

    folate

    ferritin

    It's very unlikely that your doctors will ever do all of these. But, if you have all these results, it will give you a far better idea of what is going on, and what to do next. :)

  • If you can not get GP to do these tests, then like many of us, you can get them done privately

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

    chriskresser.com/the-gluten...

    chriskresser.com/the-thyroi...

    scdlifestyle.com/2014/08/th...

  • You may have hashimotos disease, which is an auto immune issue with the thyroid. You can get these storms when the thyroid is self destructing.

    You need the thyroid antibody tests doing. Make sure you request them.

    Here is a link to bipolar, which is very often a hidden thyroid issue.

    psycheducation.org/treatmen...

  • You mention pains in wrists and hands and doc suggests rheumatism at age just 41?

    Try holding your hands above your head. If that makes it worse, then I would immediately suggest carpal tunnel syndrome, a classic symptom with hypothyroidism. Get a referral to a hospital where they can do a test to verify this. A very simple op to remedy it and you'll see a 95%+ immediate improvement.

    I had to abandon all DIY work but as soon as wounds on wrists healed after the ops I could spend hours painting, decorating with no problems.

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