Running out of ideas

Hello all,

I have a strong family history of underactive thyroid. My mother and all my aunts suffer from it .

I am 27 years old, and over the past two years I have gained around 2 and a half stone and being feeling extremely fatigued. This is despite a high amount of cardiovascular workouts, and eating a healthy balanced diet as I did before. I am physically fit despite being so overweight, I have passed a marine fitness test and my personal trainer says I am working very hard.

I have tried all within my power to lose body fat but there has been zero success, I just look fatter and my clothes are tight. I feel whatever I do will not work. It reached the point where I again visited my GP after gaining 6kg's in just over 7 weeks which I consider quite alarming. We ran what must be the 4th or 5th blood test and predictably the results were ' all within the normal range'.

I've been told it is normal before however nothing is changing for the better despite healthy lifestyle changes.

This prompted me to visit an endocrinologist at a private practice. On the 16th February 2016 I saw an endocrine surgeon and explained my symptoms, he said to me that he felt I would benefit from a trial of thyroxin due to the weight gain, low energy and strong family history of underactive thyroid. I presented a copy of a blood test result from October 2015 to the gentleman. My TSH was higher end of normal at 3.43 ( normal range is 0.3-4.5) and my t4 was lower end of normal at 13.1 (normal is 10-22). This test was was 11:20 in the morning.

I had a more recent blood test earlier this month, and again 'normal' results. There were no thyroid antibodies , TSH now 2.4 and T4 12.6. Has changed slightly.

I presented these results to the private GP and contrary to what I had been told from the endocrine surgeon the following week he felt that actually I would not benefit from any thyroxin. My TSH was normal, and the T4 was again with normal range. He explained to me that prescribing thyroxin could actually do me more harm than good as it would possibly make me overactive - and lead to heart problems such as arrhythmias. He is running another blood test looking for testosterone issues as that can apparently give you similar symptoms. I did ask him what is causing this then? He didn't actually know but he said diet and lifestyle changes could help.

I feel as if I do eat very healthily and now I am very confused as two different medical professionals have told me such differing information.

I feel as if I have nowhere to turn- I have a lot of the symptoms but nobody will prescribe me anything. I understand why they will not but what am I to do? Just wait and live like this ?

It doesn't seem fair. I am 27 and should be in the peak of my life and I am suffering here.

Has anyone else had similar experiences? What do you think I should do?

I plan to perhaps get referred to an actual endocrinologist at hospital - I am based on Birmingham and I have been told there is a consultant at the Queen Elizabeth Hospital who is particularly good. Does anyone know her name ?

Any help you can give me would be massively appreciated !

5 Replies

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  • Unfortunately Jose88 you have got onto the roundabout which you yet cannot get off.

    'Norma'l with regard to the whereabouts of our blood tests is meaningless to us who have awful symptoms. The doctors and many Endocrinologists refuse to acknowledge these or even know them.

    Before the blood tests were introduced in the late 50's all doctors knew and prescribed Natural Dessicated Thyroid Hormones, even on a trial basis for the patient.

    We have to read and learn and many on this forum have been in similar situations to yourself. Being told 'bloods normal' - you don't have hypothyroidsim/hashimotos/etc because 'your bloods are normal'. You feel like you've absolutely nowhere to turn.

    Get a print-out of your results with the ranges and post on a new question for comments.

    When you go for a blood test it should be the earliest possible, and fast (you can drink water) - if you were on hormones you'd allow 24 hours between the last dose and the test.

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

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

    thyroiduk.org.uk/tuk/about_...

    Ask for B12, Vit D, iron, ferritin and folate to be tested and also thyroid antibodies.

    Also ask for Free T3 and Free T4 to be tested. Labs don't usually do these if our TSH is in 'normal' range. but we can get a private blood test. The only active hormone required in all of our billions of receptor cells is T3 (liothyronine) and levothyroxine (T4) is supposed to convert to sufficient but sometimes it doesn't.

    If our FT3 is low (even if it's in range it could be bottom of range when we need it towards the top) we cannot function properly, i.e. we usually have a low temp and pulse because our metabolism is too low in T3 for our bodies to work efficiently in hypo everything is slow.

    You could also have an Autoimmune Thyroid Disease called Hashimotos (the most common thyroid gland disease) antibodies will confirm or not if you have it.

  • They always say that the symptoms are hard to take in because they are so non specific. As a fellow professional within the medical field, I can understand the difficulty the Dr has.

    Perhaps I can trial natural derivative thyroid hormone- I am going to see my GP in around an hour or so. I will ask for a referral to endocrinology and hopefully that will help?

    Exactly- nowhere to turn... its like being told to deal with it and stop whining essentially.

    I had a private blood test looking for thyroid function and testosterone deficiency this morning and thankfully I had ate nothing prior to the appointment. Hope this can shed some light on the situation. The idea of self medicating seems scary to me due to the warnings I have been given regarding cardiac arrhythmia.

    My B12 is fine, no thyroid antibodies detected,iron and ferritin normal.

    Free t3 is a good idea I don't recall it being tested before with me, at least not recently.

    Thank you shaws, I will post another question.

  • I don't know why they give warnings. If anyone who has taken more thyroid hormones than they should will have very unpleasant side effects and reduce it themselves. They will have hyper effects.

    I wasn't overdosed on levothyroxine but had never-ending palps which caused me to go to the A&E dept quite a few times and sometimes by ambulance plus a whole combo of side effects. The cardiologist couldn't figure it out either. Isn't it strange that as soon as T3 was added, everything calmed down. I'm on T3 only now and was also good on NDT with no adverse reactions.

    The scary thing is when you're on new medication which we expect to help and we're worse, we don't have a clue whether it is a common sensation/reaction or why they are happening. GPs also haven't a clue and are apt to prescribe anything else to keep us quiet which isn't very helpful for us, the patient. (that's the effect of looking at a print-out for answers instead of at the patient and listening - as they used to do).

    thyroiduk.org.uk/tuk/about_...

    You are more likely to get cardiac arythmia through undiagnosed or too low a dose.

    For info. This is an archived website as Dr Lowe died two years ago and he was an Adviser to Thyroiduk.org. There's lots of info but links within may not work due to it being archived.

    web.archive.org/web/2010103...

    web.archive.org/web/2010121...

  • Well that didn't go too well. The Dr again said I was ' normal' and that there is a danger of becoming transfixed on this issue. He wants me to' get thyroid out of your head as it is not the problem'. He said I am being seen by an endocrinologist already therefore there is no need to go elsewhere.

    Yeh, but did a Dr prescribe you T3/NDT or did you self medicate? I can't even get a diagnosis ! I don't know what to do...

    The Dr always looks at the results and say that the results do no support use of thyroxin! He fake listens but has completely ruled it out, said we will have to look at more 'obscure' reasons such as prolactin , testosterone .

    I have read that it can give you those problems, it's a big worry as my father passed away from coronary artery disease 3 years ago, aged 58...

    What do I do next??? everything you mentioned is 'normal'. Think I am starting to dislike the word ' normal' now ha

  • Dr also said that if all tests come back normal I may have to accept that there is ' no reason' for my symptoms. Very odd.

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