Help! Suffering for 25 years but having trouble getting diagnosis. Very confused and depressed about test results!

Hey. This is my first post and Id be SO grateful for any feedback or advice.

So I'm a 40 year old man in London. I had glandular fever when I was 13 and have been complaining of chronic tiredness since then. I suffered with a massively bloated/distended stomach since I was about 8, IBS symptoms, easily put on weight, had trouble losing it, been massively depressed, anxious and irritable all that time... After 18 i began drinking too much coffee and eating sugar for energy and developed a bit of a drink problem which is in control now.

I've been going to the docs complaining of the tiredness for 25 years and nothing has helped. Developed Atrial Fibrilation 10 years ago. Been tested for Coeliac disease and many other things, all negative - got tested for Sleep apnoea recently which was negative BUT the specialist told me that my 'thyroid levels are on the low end of normal'. He and his colleague seemed to think this might be it and said they'd write to my GP.

I got excited about this. I eat a lot of (cooked) broccoli. Ive been feeling a bit better recently then about 3 weeks ago FELT TERRIBLE and was wanting to sleep at work - you know, that crushing mental fogginess and heavy tiredness. Researching thyroid issues I notice the soya is bad thing - and Ive been drinking soya milk for the last three weeks right as my energy levels have dipped. I stopped a day ago and some of the crushing tiredness has gone. So this has made me think it is a thyroid related issue.

I went to my GP today who hadn't had the letter yet from the Sleep apnoea people and wasn't convinced that this is a thyroid issue -

in Jan 2007, my TSH was 1.56 (normal 0.27 - 4.21 he says), T4 levels 14.3 (normal 12 - 22 he says).

In 2014 my TSH was 1.88 and T4 14.6

He said I had one test for TPO at some point which was negative.

He said that because the TSH wasn't raised it can't be thyroid.

He has sent me for another test and if it is normal they will take no action.

When I mentioned the Soya thing he said 'Who told you that?'

Is it possible it is still thyroid related?

Could it be to do with pituitary gland?

I was thinking of loading up with Kelp tablets. Should I?

Should I go private?

I am severely depressed! Help! Thank you!

12 Replies

  • Many GPs are clueless when it comes to the thyroid hence many of us are forced to go outside the NHS.

    Broccoli I think is a goitrogenic and should not be eaten in excess. Soya milk seems to be a no no but there are other non-dairy milks, I use lactose-free. Not sure about kelp and it would be worth doing a Search on here as I'm sure there's been posts about it.

    You may be better off going to a private specialist, a list is available.

  • You definitely should NOT "load up" with kelp tablets.

    If, after carefully reading up on iodine, you eventually decide to try some, take it very carefully. Excess iodine intake can cause hypothyroidism.


  • My TSH and fT4 were perfectly normal but I was severely hypothyroid. The normal figures suggest your thyroid gland is OK but it doesn't guarantee your body is able to utilize the hormone effectively (hormone resistance). The only way to confirm whether it is a thyroid hormone problem is for your doctor (or a specialist) to prescribe an incremental trial of thyroid hormone to see whether you improve. If you don't improve and show signs of hyperthyroidism (overactivity) then it is unlikely to be thyroid related. Unfortunately it is very difficult to find a doctor who is prepared to do this. I would have one last go at persuading your GP, make a list of your symptoms and suggest you can monitor progress (record your pulse) to ensure you don't become overactive. Even if you go private you may not get the help you need.


  • If you go private, research consultant first, you'll find many on google, and can find out what their interests are, and what treatments they use.

  • If you email she has a list of NHS Endos/private doctors

    who are sympathetic. These are some links which may be helpful. Nowadays, many medical personnel have no clue about clinical symptoms so diagnose on TSH alone. Considering the TSH varies hour by hour, day by day, it should only be used as a tool not a diagnosis.

    Gp's will take no notice of this test but it is useful for us.

    Tick off the symptoms list and you can show GP the interpretation of the last link. Thyroiduk is a NHS choices site.

  • TSH is highest first thing in the morning so that's when you need to have your blood test done. Lots of people on this site self medicate because they can't get any help from their doctors.

  • Your t4 might be in the reference range ( I wish they stop calling it normal!!) but it is low. Mine was 14 and has since dropped to 13 and I felt awful. You might need to get some private testing done to look at t3. And your doc is wrong about TSH being the only indicator of thyroid hormone issues

  • Hi Matt. Low T3 can make you very tired. There are loads of websites that speak of T4 hormone not being converted by the body to T3 (the active hormone) - which can cause terrible symptoms you describe, your TSH is low anyway. Selenium (health food store) can aid the body to convert the T4, stick to the recommendation though!! But stil you'd prob need t3 anyway, & T4? I feel like a different person since taking this but of course were all different...I still have terrible bowel probs but at least I have energy etc. best of luck!

  • Thank you for your advice. I really appreciate it, Just got some blood results from 2010 - my TSH was 2.08 but T4 was 11.9.

    Also my MCH was 33.2 when normal limit is apparently 33. Online it says 33+ suggests a thyroid issues.

    Its overwhelming to think I'm finding out whats wrong with me but I'm really enraged - have been going to the docs since I was 14 with fatigue and they've always said my thyroid was fine! Argh!!

  • Hello Matt,

    I am so sorry to hear you are suffering so much, it would be very understandable that you are severely depressed.

    The first thing I would say is be careful with your kelp tablets - to much can cause problems as can not enough.

    In my opinion the blood tests don't mean much - as long as their is nothing out of the ordinary.

    Soya is to be avoided, but if you are looking for a dairy/soya/gluton free alternative then you could try koko - its coconut milk.

    As you are suffering so much and not getting anywhere with your GP's then maybe would you benefit from seeing the wonderful Dr Peatfield? Costs are reasonable and Thyroid, Adrenal, Sex hormone etc tests can be done, It is just an option and the good thing is you can get the Thyroid/Adrenal medications online and in certain places at such a good price.

    I hope you get the answers you need and start feeling well soon

    Best wishes

  • Have a look at this, There is a chance you could be hypo but never get the raised tsh.....

    Glandular fever can often lead to being hypo, but I can't remember why...... I had it then was hypo a year later.


  • Your t4 is at low end of normal theres no dispute whatever about that

    your tsh is low but that could be you have central /2ndary hypothyroid instead of primary hypothyroid but too many doctors forget that situation exists. Both my husband and daughter have it and i suspect that glandular fever is the agent which damages the pituarity and leads to central hypothyroid

    i suspect your cholesterol will be high

    your ferritin


    vit d3


    will all be low

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