Desperate for help!!!

Thought I'd write a blog to put my thoughts / frustrations down in writing. I'm a 30 year old male who up until 3 years ago was a very sporty and fun loving guy. I regularly play football and go to the gym and am a league cricketer and play at a good standard. Well, I do at the minute... I doubt I will for much longer.

My problems started several years ago just before I travelled to Australia to travel and try to further my cricket career. I noticed I had begun to sweat heavily from my arm pits. My enjoyment of the trip was spoilt by that along with various other problems.

The list of things wrong with me may take some time... Sweating, hot face, tiredness, leg muscle pain, achilles pain, acid smelling sweat & urine, nervousness, anxiety, daily headaches, blurred vision, dizziness, mood swings, bloodshot / yellowy eyes, depression. Funny thing is that to look at me you wouldn't really think there is anything wrong (unless you look closely!). That's probably why my doctor keeps on ignoring my complaints and I'm on a final warning about my sickness record at work.

The doctor has taken various blood tests and I've got the readings here if anyone wants to know any of the readings. I also paid for a private thyroid blood test to be done because my doctor refused to do one. I'm told there's not too much out of the ordinary in them. The results are as follows:

ENDOCRINOLOGY

THYROID PROFILE 2

TOTAL THYROXINE(T4) 83 nmol/L 59 - 154

THYROID STIMULATING HORMONE 2.49 mIU/L 0.27 - 4.2

FREE THYROXINE 15.4 pmol/l 12.0 - 22.0

FREE T3 5.1 pmol/L 3.1 - 6.8

IMMUNOLOGY

THYROID ANTIBODIES

Thyroglobulin Antibody <10.0 IU/mL 0-115(Negative)

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 8.9 IU/mL <34 (Negative)

Method used for Anti-TPO: Roche Modular

My doctor had finally referred me to the Rheumatologist but unsurprisingly they cancelled my appointment tomorrow... today. I'm losing hope of ever finding out what the problem is and this is absolutely ruining my life. My career is in danger, I can't meet anyone new because of the smell/sweat (as a single guy this is not a good look!) and my sporting career is being badly affected by my sight. It's worth mentioning I recently had an eye test and my eye health is fine.

Hope there's someone out there with some ideas what I can do to make this better (other than jumping off a cliff). I'm at the lowest point I've ever been at and any advice would be very much appreciated.

Paul

28 Replies

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  • I can appreciate how frustrating it is for you as an active person. Has it been suggested that you visit an eye specialist?

    Sorry that I can't help but there's bound to be someone on here that can so you may get a response tomorrow.

    You mustn't give up - it's complex with thyroid disorders and you have to work your way through one step at a time.

    Good luck.

  • Hi paul have had same problems as you im on my third year of fighting docters who dont want to send you anywhere cant answer ur blood results brain is mush at moment but there are a lot of good people on here who can.Have you been to see an endo if not ask docter to send you and if you have ask him to send you again.I know you probably dont feel like it but you have to try and keep going and fight. I found out about my thyroid through a dermotologist after i had written to a lupus centre and sent photographs some of the things you are describing could also be fibromialgia i have that to and lots of people say they go hand in hand rheumy will find this when you eventually get to the appointment. best wishes let us know how you are getting on x

  • Sorry I just wanted to reply although I have absolutely no experience of what you are feeling - even did my homework & looked back at your posts, but none the wiser.

    Yes your TSH is above 1 (THAT is normal) but no TPO antibodies - so not autoimmune? - but if you are hot, it isn't the usual Hypo thing (we're cold!) are you thinking Hyper, has it been suggested & that's why you are looking here?

    all I can pick up on is yellowy eyes - have you had liver testing? adrenals? - I really don't know about these (we're not docs here sorry, just Thyroid sufferers)

    so the only thing I can suggest is elimination - deficiencies - testing Vit D (for muscle/joint aches/pains) and irons, ferritin. folate & B12. (all cause fatigue & more)

    If you have stomach issues a lot of folks find avoiding gluten helps (processed carbs in general really, like bread, pastry etc) - I also hope you're not on opramizole, as so many are - this just stops the enzyme working and natural stomach acid is needed to kill nasties and let essential nutrients be absorbed - food for thought anyway. Just to let you know we're here & trying to help ....

    Hoping more knowledgeable folks will chip in here! Jane :D

  • Spareribs, a lot of hypos suffer from heat - actually, he just says 'hot face'. I am hypo but I know all about that hot face!!! It's horrible.

    Paul, whilst your TSH isn't too high, your FT4 is low, not even mid-range. And your FT3 could be higher. Most people need it at the top of the range to feel well. Trouble is, with that TSH where it is, I doubt if you're going to find a doctor to treat you unless you go private. However, if you try testing again at some later date, things might change, that TSH might go higher.

    Spareribs gives you a good list of tests to have done to rule out other problems, and I would add to that testosterone (I wonder if it might be a tad high...).

    Are you on any meds, such as statins, or beta blockers, or anything?

    Hope you get some answers soon, Grey

  • Thanks for getting back to me. It's nice to actually get replies because it all seems to be a very lonely battle at present. I think my GP genuinely has no idea what the problem is, it would be better if he admitted that. That's why he referred me on to the rheumatologist. He initially suggested that my symptoms could be those of someone who is hypo, but also they could be a variety of other things. My B12 was low once when I was tested but when it was re-tested returned to normal. I haven't had liver testing or adrenals (that I'm aware of) done so maybe I should ask for that when I get to see the rheumatologist. I haven't seen my GP since I was referred on as I felt like they were washing their hands of me. Not a nice situation to be in and one I'm sure others will have suffered from. Thanks again for taking the time to reply.

  • I have learnt from this site (and others) not to believe 'normal' results - you have the right to see your tests (all your records actually)

    - try asking what your B12 actually was, get a printout with ranges. Sadly it's not a lonely battle (although it does feel like it) there's loads of us fighting to feel better! J :D

  • ....for those of us with aches and pains and various conditions it is important that the B12 result is near the top of the range. Also D3. Try to obtain your results and ranges from your surgery and post here. We will all help you. We are not doctors but between us all we can sort something out for you.....

    Once you are familiar with this site and the people you will realise that it is a long journey for many of us. I was not diagnosed until I was 59 in 2005 after years of poorliness, fatigue and the stress of hanging onto my job and taking care of the family. There are simply loads of us.....so hang in there....Being on this forum has enabled me to do lots of fine tuning to improve my health.

    Also look at drrind.com where you can read up on Thyroid v Adrenals. It's all very complicated but if you think of the Endocrine System as an electrical circuit - then when one gland is out of synch then the whole thing becomes unbalanced.

    How is your diet ? How much water do you drink ? May just help - but hey just one step at a time and small steps too.....keep posting.

  • My comment is going to be absolutely useless for you (sorry), but just wanted to encourage you to keep fighting for additional testing until the issue is however. i first went to Doc in 2009.....i was diagnosed with borderline Hypo at that time and was given no treatment or follow up appointment. I didn't persue until few months ago when i was diagnosed with Hypo and multi noduled goiter, perhaps if i had continued to peruse, i wouldn't have got the goiter.anyhow, the point is.....it's your body and you u know it better than anyone else, keep on at them and good luck to you. Anne

  • Hi Paul,

    I hear your frustrations, I think alot of us are in the same boat (that feels as though it's sinking) having read your symptoms, mine are very similar & I am 29, female. I have always taken pride in my appearance & exercised on / off & enjoyed life & been 'happy'

    Well over the past 5 years I have slowly felt worse & worse within myself. I have had many blood tests & been classed as borderline hypothyroidism (or so they call it) for over a year. This past year things for me have deteriorated, I had a blood test in November which was (abnormal - 5.5) and the Dr did say he would prescribe me tablets but i said I would try to loose weight, ect, (I have been fighting this saying it's weight gain dragging me down, or i need to go out more, find a better job, etc) my brain works overtime & i constantly give myself a hard time. What with zero energy - **always tired** - I never get done what I want too. Most recently I have had suicidal thoughts - not that I would harm myself but even just thinking this way is alarming me, plus only recently realising that muscle pain is connected to hypothyroidism, I finally decided I need help. I've recently had another blood test & it was again (abnormal - 7) it's got worse so no longer 'bordeline' I am now taking 25mg of Levothyroxine, only been a few days.......a long way to go.......

    But don't wait. Go back to the Dr & ask for it, i'm not sure by your blood test results what your levels are but your symptoms are not normal. You can't carry on feeling this way. It will only get worse if not treated.

    I am also on a warning at work for making minor errors due to fatigue & confusion - but now that I have been diagnosed & I am getting my head round the fact that something is wrong, which is out of my control, I am not going to let it get the better of me. I hope you do get this sorted out & feel better soon!!!

    Jo

  • Hello Paul, Not much good to either really but have one or two things you might try. They cost nothing. Get ALL your minerals and vitamins checked - pay particular attention to Vit D, B12, B5, B6, ferritin, folate, magnesium,zinc, sodium, calcium. As far as the ranges are concerned : where are you within that range? Near the top, bottom or in the middle. What is the optimum level for good health? If you are at/near the lower end supplementing is necessary.

    Now for the adrenals : 1. 7day temperature chart, ( 1st 2 take before rising 1st under the arm 2nd by mouth - this is for the thyroid ---- remaining 3 lunchtime, teatime, 8pm ish for the adrenals) what to look for are the fluctuations in temperature. You will know if they are too big.

    2. Raglan Test = blood pressure check

    3. Romberg test = for balance

    4. Eye sensitivity test

    5. Sergents"s White line

    6. FInally Dr Wilson's questionnaire - google Dr Wilson Adrenal Fatigue, the 21st Cent Syndrome (buy the book along with your Thyroid & how to keep it healthy By Dr Peatfield) All the above tests are in the book.

    Finally for the Adrenals you could have a Saliva Test done --- privately of course --- note that NHS will not accept it but at least will know one way or the other.

    Hope this will prove helpful.

  • Hello Paul - google Dr Barry Durrant - Peatfield. He deals with metabolic issues and it sounds like you've got something like that going on.

  • Hi Paul,

    My heart goes out to you.

    I felt so bad I gave up on Doctors altogether! On a visit to the nurse (for a flu jab), she asked how I was. I told her I was shocking, and felt terrible. She made an appointment an I saw a locum Dr who ordered blood tests. 1 week later, called in - severe hypothyroid/Hashimotos !

    I went private to see an Endo as I wasn't feeling any better £180

    He ordered an adrenal test. Blood was taken, something injected, then blood taken again 30 minutes later. £136. This would have been £300 but the NHS did it, still had to pay though.

    Adrenal fatique!.....but nothing to worry about.

    Your answers Paul, will have to be slowly ruled out of a huge list. Don't give up. Please DON'T STOP going to your Dr. like I did.

    Sadly it takes time, you may find out the answers yourself on the net. Either way, keep at it Paul.

    X

  • Hi Paul,

    Another person commiserating with your illness. I would suggest you have a private appointment with a sympathetic Endo (NHS) or a doctor (private) and if you email louise.warvill@thyroiduk.org she will provide information.

    Nowadays we are diagnosed by blood test alone, even though people are experiencing distressing symptoms but most GP's are unaware of clinical symptoms.

    These are a couple of archived links as the originator of the sites died last year but you may get some info from them.

    web.archive.org/web/2011042...

    web.archive.org/web/2011030...

    web.archive.org/web/2011041...

    (read column on right hand side)

    web.archive.org/web/2009081...

  • Hi Paul, your intolerance of heat is something I've come across writing to people with hypopituitarism. I know the websites for hypopit say sufferers can't stand cold, but three people I know have complained of finding heat oppressive - so I wonder if you could have hypopituitarism too. Maybe you should get yourself checked for all the pituitary hormones, especially growth hormone. The others are thyroid stimulating hormone (which you've checked), adrenocorticotrophic hormone - to stimulated adrenalin production - and luteinizing hormone and follicle stimulating hormone which cover the sexual side. And prolactin, because pituitary dysfunction can mean an excess of this, which can cause depression.

    You say when you were well you were sporty, I thought I'd just mention - not accusing you, but it might apply to your friends at the gym - that taking steroids can damage your hypothalamo-pituitary system (http://uk.answers.yahoo.com/question/index?qid=1006042117761).

    Getting your pituitary checked is a nightmare, just as it is trying to get diagnosis for hypothyroidism. Don't be deterred by getting a 'normal' result for the short synacthen test - it misses 40% of people. Also, if they say 'Your IGF-1 levels are normal', that doesn't mean you don't have growth hormone deficiency either. Be persistent and try to see a good endocrinologist - someone else suggested Dr Peatfield and that sounds good advice. Please don't despair. I'm in touch with people with hypopituitarism who lead normal happy lives now that they're treated, just keep pushing. Get your family involved to help you, and definitely don't jump over a cliff.

  • Hi Paul

    You don't mention any Liver function tests but yellowing of the eyes is usually indicative of a liver problem, not necessarily serious, but that's what I would start with. Go back to the GP or a different one in the surgery and ask for Liver and Kidney function tests. You could also see if they will do Vit D and B12 and the others that have been suggested but I would definitely get the liver and kidney tests to rule those out.

    Shaz

  • Paul, it has almost all been said and what a lot of info to take in. In the very first instance make a decision that you will gather together as much info as possible - getting a full screening done should be offered regardless when you feel this unwell.

    This would include, liver function, folates, ferritin, B12, etc. as a start.

    Keep a record of everything covered including any patterns you see and hopefully something will eventually emerge.

    Try to be patient - it can be very difficult to trace the underlying cause but hopefully you can find a little strength to treat this as a road to discovery and don't take no for an answer. If your GP won't screen any further (which they should do really so that the endo has all the info in front of him/her) then ask around and change your GP.

    Take care.

  • Hi Paul,

    Your list of symptoms are very similar to mine. I'm hypo and it looks like you are going down that path. For many years along with tiredness and weight gain I had problems with sweating, sometimes it did have a funny smell. I put this all down to exhaustion and living on adrenaline. Fast forward to two years ago I was diagnosed hypo. I had yellowy bloodshot eyes too. My optician said you get extra fat and fluid behind your eye in hypo, that creates pressure, hence the redness. Every summer for as long as I can remember I just can't stand the heat. Also I do get very cold like my thermostat doesn't work at all. Even drinking a warm drink can have me running with sweat. I've noticed time and again when my thyroxine is low I sweat, sometimes so badly I can't sleep, it goes with nausea and weekness with me. I also used to get daily migraines from 1996 until I got diagnosed 2 years ago. One thing that has improved with me on Levothyroxine is headaches/migraines. If my dose is cut, they come back.

    As the others have said get your minerals and vitamins checked. When you're hypo you tend not to absord things from your diet as well.Vit B12 is always usually quite low, so is Vit D3, supplementing with these, selenium, and iron can make you feel an awful lot better, but it does take quite a while.

    I too have achillies pain, I even developed lumps there and awful tightness. Also desperate pain and tightness in my calves rather like "stitch" Walking on the slightest incline is very painful. A lot of people on this site have similar problems. Mine go back 7 years and I'm hoping when my meds start working better it improves.

    My daughter has just been disgnosed with hypo and she too has the achillies pain which has improved on Levothyroxine. I think there are quite a few links with this and hypo if you google it.

    Another thing get your cholesterol tested, it usually increases apace in hypothyroidism. This alone could be worth insisting to your doctor you go on Levothyroxine.

  • your Free T4 and fT3 don't look too bad but your total T4 looks a bit low and your TSH a bit high so possibly slightly hypothyroid? Get the feeling there is another route cause and this could be a knock on effect. Try looking into what can cause a low TT4. You may have low thyroxine binding globulin levels. What could cause this? eg. Low estrogen or high corticosteriods.

    en.wikipedia.org/wiki/Thyro...

  • Thanks for all the info on this everyone. As a complete novice it's helpful to get suggestions of tests and things I should look into. I don't blame my GP for not being able to get to the bottom of the problem either because its clearly very complex and will probably need an endo to get to the bottom of it. The hard part seems to be getting referred to one. I may have to go private I think. One of my biggest frustrations is not being to explain my symptoms, it's really helped to get them down in writing.

  • Wow, just been looking at some pics of myself from a couple of years ago and the difference to today is amazing. Shame I can't post them on here.

  • Paul, I've read several articles saying that athletes make themselves hypothyroid. The intense exercise causes the overload to the thyroid and when you think about it, you need a lot of T3 to keep you going. Marathon runners especially can have problems. I know one article was on Dr. Mercola's website but if you Google, I'm sure he is not the only one commenting on this phenomenon.

  • I didn't think my T3 levels were too low Heloise? I thought it was my T4 that looked a bit low. I don't really know what I'm talking about though!

  • Yes, I'm not expert either but I think to be in the upper third your T3 needs to be at least 5.6. (But check my math skills.) Dr. Rind says you have to take all three (FT3, FT4, TSH) measurements as a whole and if you can figure out this scale, it might help.http://www.drrind.com/therapies/thyroid-scale

  • drrind.com/therapies/thyroi...

    Maybe this link will work.

  • Managed to post my mug shots as a profile pic... Now I'm not a doctor but I do know I look horrendous on the second picture!!

    I didn't think my T3 levels were too low Heloise? I thought it was my T4 that looked a bit low. I don't really know what I'm talking about though!

  • Hi Paul,

    If you want to reply to a particular comment you have to press the blue 'reply to this and another box will open. That person will then be alerted that you have replied. Otherwise you may wonder why there was no response (if one was needed).

    Yes, it is a big learning curve but I am sure you will get to the bottom of your ill-health, especially being a sportsman.

  • I empathise with you .... Its very hard trying to get anything done correctly as far as lab tests go for hypothyroidism or any thyroid problem never mind finding a doctor who will listen in the first place .. penny wise and pound foolish comes to mind.

    Don't give up if you get no joy with one doctor then go to another and another if you have to until someone listens, don't leave this .. you are a young guy and deserve a healthy life not one where you barely function.

    My local hospital in Dorset won't do any of the tests other than TSH as they say they are too expensive according to my GP !

    I can't be bothered to argue or even care any more as I'm now too tired.

    We shouldn't have to constantly fight for optimim health, do our own research and investigating about Thyroid problems, its complicated for a GP never mind us.

    I read an artical about a Doctor who decided to specialise ( Dr Skinner in Birmingham ) who specialises in thyroids because the NHS is so inadequate in dealing with this disease.

    I went on the Website looking for him last week and his details to phone and find out how much a consultation etc; will cost ... but shocked to find out he had been taken to court and threatened with being struck off for refusing to go by the NHS / N.I.C.E. guidlines and instead treats patients as individuals, treats them according for their requirements until they are feeling and functioning at an optimim level regardless.

    Many patients he has treated actually went to court on his behalf and written letters to the Court .. the Judge decided he shouldnt be struck off but he can now only treat new patients if they were refered by a GP.

    DR Stringer is now trying to raise awareness World Wide of the debilitating issues that Thyroid problems cause but are not recognised as serious.

    If you go on line you will find a form to register if you feel strongly .. he needs 50,000 signitures to persue this.

    Its also interesting to know that

    In America , the test levels are 0.3 to 3

    Australia, ,, ,, ,, ,, ,, ,,

    South Africa, ,, ,, ,, ,, ,, ,,

    New Zealand ,, ,, ,, ,, ,, ,,

    United Kingdom the test levels are 0.5 to 5 ?

    N.I.C.E. promised to increase these levels inline with the rest of the world 12 years ago and to date it hasn't yet been done.

    It makes me wonder if they are looking at the cost and not peoples declining health because at this time if you go by the test results for the rest of the developed world there are thousands if not millions of people walking around in the UK undiagnosed , border line or are very ill with no quality of life because of lack of correct treatment.

    If they were to test and treat people correctly yes it will cost alot of money but in the long term I personally feel it will save so much money as right now they are treating all the symptoms we are all getting as single issues when they are really thyroid related .. doesnt make sense to me.

  • Thank you for your response, found your comments very interesting. As it happens I wrote a letter of complaint to my doctors yesterday (first one I've ever written!). I think to have been suffering for over 2 years with barely any action is quite enough. My doctor is very helpful but I just get the feeling they rely far too heavily on the test results. It's almost like he doesn't believe me and is just being nice/polite by getting more TSH tests done. I'll have to wait and see what response I get to my letter I guess.

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