One final go?

Hello. I am a 22 year old female in desperate need of guidance. I was taken to the doctors at 11 years of age as my parents suspected I had an underactive thyroid. I had always been overweight despite not over eating and being a normal active child, was always tired and sluggish, had a yellowish tint to my skin, eczema,  asthma etc etc. 

The doctor diagnosed me with an enlarged thyroid and said it had a chance of going underactive at any time. Two years of blood tests later to monitor my thyroid and the decision is made to scan my thyroid.  The scan showed that my thyroid was apparently normal. And the testing stopped.

Jump forward 8 years and I've basically given up all hope of ever feeling normal. I've gained considerable amount of weight, feel like every moment of life is a considerable effort,  have problems with circulation, joint and muscle problems, cannot regulate my own body temperature and struggle to concentrate on a daily basis.

My dad and sister in the last year have been diagnosed with an underactive thyroid. My dad's results came back abnormal but my sisters came back normal until they did an antibody test which came back abnormal. They are both now on medication. This triggered me into deciding that I wanted my diagnosis too. I am just plain miserable.

So my doctor happily agreed to do a blood test. My tsh came back 3.8 and my t4 came back 9.1. Which I am told is perfectly normal. However my own research tells me that I am borderline underactive. Am I right? So I push for an antibody test, which is reluctantly and begrudgingly done. And comes back normal.

I was so devastated that I cried. I am now tempted to purchase medication online, or at a last resort purchase ephedrine as I know the weight loss and energy benefits, as well as the potential harmful effects of course. 

The thyroid UK website states that you can be privately blood tested for a smallish sum. However my concern is that the tests will show exactly what the doctor said and will be no help at all. Unless it shows that my t3 is said abnormal. Which hasn't so far been tested. 

I just want some opinions really by people who have gone through similar things or anyone who might know what my best next step is. I can't even fathom living life this way for much longer than I have already endured.

6 Replies

  • These results both look quite low - but please can you confirm the reference ranges....

    Low TSH and low FT4 could show a problem with your pituitary gland, or central/secondary hypothyroidism.

    Please can you let us know what the antibody result was - thanks!

    Also, have they tested your B12, Vitamin D, iron, ferritin..? x



  • The last line of your post brought tears to my eyes. You are too young to have to endure this misery.

    It is hard to say without reference ranges but your T4 seems very low and TSH is certainly not as low as it might be. In any event, it is always slow to respond to changes in T4 and is not the exquisitely perfect test it is made out to be by endocrinologists. I would definitely suggest getting a free T3 test and then posting result here with ranges. Perhaps have the whole thyroid test to be sure of up to date levels, to include free T4 and TSH. It seems fairly obvious that you need help but in the meantime, ask your GP to test your serum iron, ferritin, Vit D, B12 and folate. These are often low in hypo people and can make one feel very ill in all sorts of ways. Low iron is always my issue so I take a regular supplement.

    Try not to lose heart for the moment and do try not to resort to ephedrine. It will just complicate everything even more.

    When you have the results, post here for advice. You will get help soon and you will get better. Just hold onto that thought. xx

  • I am so sorry to read about your experiences. It reminded me so much of my son's experiences before at last being diagnosed with severe Crohns and associated deficiencies in his late 20's when he ultimately collapsed and his friends fortunately took him St James Hospital in Liverpool - I had always been told by GPs here, that there was nothing wrong with him, I was just an overanxious Mother ...... You have had good replies from Louise and Hennerton and I know that once you have your blood results posted here (even if you have to go down the private testing route) you will receive some excellent guidance. Take heart that even if you decide you have to self- medicate, like many here, there is a way forward. I do get frustrated by 'borderline' and/or 'normal' descriptions of our blood results, what is important is what is right for you, and I think there is more than enough years' of evidence to demonstrate things haven't been going right for you. Good luck :-)

  • Did you know that you should have your blood test done as early as possible in the morning? Your TSH is highest then, and you are looking to get a TSH result above the top of the range. At the moment you are, as you said, borderline underactive. Certainly I would feel awful with a TSH of 3.8. Self medication is an option - lots of people on this site do it. A doctor would start you off on 25 or 50mcg of Levothyroxine. You need to look out for hyperactive symptoms - fast pulse, sweating, diarrhoea etc because being hyper is bad for your heart.

    Depending on the range used by the lab which did your blood test your T4 level is low or very low. Your body should respond to this by producing TSH to kick your thyroid into life, but it hasn't done so to any great extent. This may mean that your pituitary gland (which produces the TSH) isn't behaving as it should. This is called central hypothyroidism, and many doctors don't understand it. The only way to know whether this is the case is to get your T3 levels tested, which most doctors won't do. A private blood test as you suggested would show this.

    Good luck, and don't give up trying.

  • Thank you so much for everyones responses. I apologise for my very short reply, I'm currently using someone elses computer and internet connection as mine isn't working at the moment.

    I can't tell you how much your responses mean to me and my will to carry on pushing for a diagnosis.

    With regards to self medication, can someone send me in the right direction of a website that is safe to buy thyroxine from? That they personally use themselves or know that other people use. As I'm quite wary of putting my health at risk and wasting money. But if I can't get the diagnosis then it may be my only option.

    Again, thank you so much.

  • With your dad and sister both having thyroid problems it could point to a genetic condition - thyroid hormone resistance, also referred to as reduced sensitivity to thyroid hormone. With it blood tests can be high, normal or low, often declining as you get older.

    With thyroid hormone resistance people tend to need T3 rather than thyroxine. Are your dad and sister now well on their medication?

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