What is wrong with me?

Hi guys, I have been directed here by posting on another forum as I'm at my wits end. Since 2011 I have been vaguely unwell. Went to GP as I was always cold, even in summer, tired, losing hair etc, felt spaced out. He did bloods and all was normal so I went away feeling it was me. Then in 2012 I started getting dizzy and off balance. Went to a more sympathetic GP in the practice and have been back and to since then still undiagnosed and feeling worse. I started getting muscle weakness and trembling, dizziness, breathlessness and horizontal ridges on my nails. Did more bloods Sept 2013 and found out to be v anemic and low ferritin. Was given iron tablets but couldn't tolerate them so Dr did another blood test and told me to stop taking them as it was now in normal range. Asked him to check my thyroid as I match all the symptoms. In July 2014 it was TSH 2 and FT4 10.4. Again told normal and he couldn't prescribe any thyroid meds as I was in the normal ref ranges so said the only thing he colud do was refer me to an endocrinologist. I am on the waiting list.. I so suffer from anxiety even though I feel fine in that respect now so he says it's my anxiety causing this but I know it's not!

Fast forward to now and I feel so old and unwell, I'm only 35! I am back at the Dr on Monday and going to ask him to re-test my thyroid and possibly iron levels. I took some print outs of info that suggested all my symptoms were hypothyroid, I match them all! I feel like a wind up toy that has run down.

Any ideas?

22 Replies

  • Hi,

    It seems that all the time bloods are within range (nhs ranges are wider than others), they won't prescribe.

    Endocrinologist are the same as they work under criteria guidelines, computerized results, even if symptoms are there.

    It's enough to drive crazy!!

  • Do you have the ranges? Your t4 sounds low but without ranges I am guessing.

    Your symptoms sound consistent with underactive thyroid. Like you I looked and felt old. My face was grey.

    With respect, I would cancel the endo appt. They will not treat if you're within range and (unless you're very lucky) may insult you as your gp has done. Or they may blame it on something completely unrelated (in my case the registrar fantasised that I had myasthenia so I was sent for a completely unnecessary chest xray and told to reduce my levo to 25mcg). I'm sure that sounds terribly negative and others will disagree but if I had it to do all over again I wouldn't bother with an endo in the UK. I wish someone had warned me how fruitless it would be. The protocol is too strict and they're largely uninterested in how you feel.

    You may want to ask your gp to test vit d, b12, iron, ferritin (again), folate and certainly antibodies. Can you afford a private thyroid test? You should have your t3 tested but your gp (or lab) will almost certainly refuse, and as you're in range they may also refuse to do antibodies. Anything your gp won't do you could have done privately incl t3 and if any of it looks low you could look into your options.

    Starting now, one very helpful thing you can do is to get printouts of your test results, old and new. There may be a small charge for older results but you're entitled to them all and they will help you understand your issues.

    You will get there! But your current doctors may not help much.

  • Thank you both for replying. I don't have the ref ranges but will get a full printout on Monday and re-post back here. I didn't realise the endo would in all likelihood treat the same as GP as GP reckoned they had more clout and may possibly agree a trial medication. I just don't know what else to do. It consumes my whole life. I feel so wobbly all the time and start to wonder if I'm imagining it but I don't think I am. My surgery won't test FT3 but I might try and push.

    I used to have terrible brain fog too but that's improved since taking a good multivit and I take omega high strength as I get palpitations and breathlessness.

    How do I go about trying to treat this myself if my GP won't? I've red about desicated thyroid treatment being better than GP stuff but right now I'd take anything if I thought it would help!

  • You have all my sympathy. I have been there (I'm there now actually, but on meds).

    Is it a random endo or someone recommended here? To be fair I am very grumpy about endos, so take my opinion w a grain of salt. :-) But you will note a theme on this site as regards endos.

    You may get treatment from your gp in the end, but unlikely until you're outside the range or very close to it. Until then you may want to keep reading, post results and see what people recommend. I think TUK are not especially pro-self-treatment but in the end you may want to do your own trial.

    For me, the important thing is either to find someone who will help (who is more likely to be a holistic gp or naturopath or someone else off-piste and not an nhs gp), or to learn as much as you can if you feel up to it. And to avoid getting overwhelmed by it all. You can't force the learning experience, you will get there in time.

    A lot of people seem to find the Stop the Thyroid Madness site/book helpful, and it certainly can help you feel like you're taking control of your own destiny, which will help. This book is good: amazon.co.uk/Your-Thyroid-H...

    Or just read through some posts here, continue to ask questions. It will help you put the whole picture together. You can feel better. :-)

  • As far as I know, my GP has referred me to the endo at the hospital but the waiting list is around 6-9 months. I'm more than happy to be proactive about getting better, I've wasted nearly 4 years of my life feeling ill and having people think I am a hypodcondriac. Thanks for the link to stop the thyroid madness, I've heard of them but will look into them further.

  • Most of us here have had the hypochondriac experience. Link is to Dr P's book but if you google STTM it should be easy to find. :-)

    Did you know that there is a list of thyroid-friendly endos available from TUK? You could check to see if your endo is on there. Or you can ask here if anyone has seen him/her and they can pm you with their experience (has to be pm and not answered publicly on your thread if that makes sense). It could either quell your fears or save you a dud visit.

  • Hi Angel, What an excellent description ..." a wind up toy that has run down".

    I don't know how the NHS treats other conditions but after observing for two years, it seems it is very inadequate for thyroid problems. It's too bad you didn't find this forum back then. As been said, the ranges they use for thyroid function tests are worrisome enough but worse yet, you could be at the very edge and you are considered "well". That is not true. All your symptoms are implicated in your low thyroid and since every cell of your body needs this hormone, it is no wonder. And it is good you are looking at co factors since not only do you need sufficient T4 but it needs coordination from your adrenal glands and good blood levels of iron, ferritin, folate and B12. Even depression is a prominent symptom.


  • Thanks Heloise I too wish I had discovered this forum a few years ago! My depression is the worst it's been and I'm convinced that whatever ends up being the root of my problems is causing all of them, if yo see what I mean!

    I'm going to push to get everything re-tested along with the ones suggested above and then take it from there.

  • Make the earliest appointment for a blood test as (hopefully) the TSH is highest then and you will be given levothyroxine. It is horrendous that someone who has clear clinical symptoms has to wait until the magic number appears on the TSH result. Which, in the UK, the doctors are told to wait till it reaches 10 before medicating. I don't know what fairyland they live in but it's not here on earth. Some doctors will prescribe at around 5 with symptoms.

    Before the blood tests were introduced along with levothyroxine, patients with symptoms were given a trial of NDT (natural dessicated thyroid hormones) and if they felt much better continued on treatment. How much easier would that be today if this system was still in use.

  • I don't think I could function if I had to wait till they reached 10! I sincerely hope they have raised on this next test. Where is the best place to get NDT from, assuming he still refuses to trial a treatment?

  • Someone will respond by private message as it's against the guidelines to give information on the main forum.

    To send a private message to anyone, you click on their photo or name and it takes you to another page and you will see Send Message. You click on this and send your message to the person and it is private between both of you (or if there is more than one named then it goes to all of you) but is still private.

  • It's not you. When I had results like yours, I was very unwell indeed. Good advice from previous posters. Let us know how you get on.

  • If taking a multivitamin improved how you felt even just a little bit, then it suggests you have nutritional deficiencies. Being nutritionally deficient is extremely common with thyroid problems. Please ask your GP to test your iron, ferritin, vitamin B12, folate and vitamin D, then post the results and reference ranges for people to interpret.

    I realise that fixing nutritional deficiencies doesn't change the underlying problem (an under-performing thyroid) - but please believe me when I say it will make you feel a lot better.

    On the subject of your thyroid, the really important test you need, based on the info you have provided, is a Free T3 test. You might be unable to convert T4 to T3 and if this is the case then you will feel awful. Nutritional deficiencies also play a part in reducing T4 to T3 conversion, which is another reason why it is so important to fix them.

  • Thanks humanbean, that makes sense. I do feel mentally better on the whole, not 100% but it has improved. It is the physical symptoms that floor me. I have not had my FT3 done but I'm prepared to fight my Dr politely to do it. Fingers crossed!

  • You do sound hypothyroid and, if it helps, I was diagnosed by a private doctor years ago when my TSH was 0.49, with FT4 and FT3 low to middle of range. Since then every other doctor I've seen has told me my thyroid was fine and I should not be taking thyroid hormones! As I feel somewhat better but not normal I sometimes wonder who was right.

    Anyway, I suggest you try another form of iron supplement such as liquid Floradix from H&B or Solgar's Gentle Iron, to see if they help a bit. I was told my ferritin was normal when in fact it was something like 7 in a range of 6 - 250!

    Then you could post again mentioning the area of the country where you live and asking if anyone can suggest a good endocrinologist nearby (to answer you by PM) who might help you - because, regardless of your TSH level I reckon your FT4 is probably below range, and a decent doctor would try to find out why. Also do you know the name of the endo you're being referred to? Someone may know of him and know if he's likely to help or not.

  • Thanks for this info. I don't know who the endo is, it's just a referral from my GP to the local hospital. I live in Wales s we don't have choose and book or anything like that I don't think. When I was anemic my ferritin was 8. My last test in April showed my hgb as 12.5 which another GP said was normal. Though from what I've read it's only just normal!

    I forgot to mention I get tingling/pins and needles in my fingers and terribly achy arm muscles for no reason, usually whilst sitting on the couch!

  • A ferritin level of 8 is very low, it should be around 75 from what I remember, I also think your hgb level sounds low or only just within range. I think that right now you could phone the GP's receptionist and say you'd like copies of all your test results and could they be ready for you when you go back on Monday. That way the GP has notice that you want them and shouldn't really refuse. Also if he is likely to refuse the receptionist might alert you to that so you can get the info ready to point out you are entitled to them. There shouldn't be a charge for them but sometimes they charge a small amount for the photocopying. If I'm asked why I want copies I say they're for my consultant, but you could say they are for your own records. You shouldn't have to justify why you want them though.

    Do you get the pins and needles while resting your elbows on the arms of the couch? If so it could be carpel tunnel or cubital tunnel syndrome. I get the latter, both are symptoms of hypothyroidism but other people can also get them.

    Do you have any choice of whom you see within Wales? Could you ask to see and endo in England (I'm thinking of the Bristol area as I think someone has mentioned a good one there)? Would you be willing to see someone privately?

  • That's a good idea, I will ring the practice in a bit to request. I don't think I have a choice who in Wales I see, it's usually the local hospital but could pay if it's not too expensive. I pleaded with my GP to trial a med to see how I go but as sympathetic as he was, he refused and claimed the endo would have more power to do that. Now I'm wondering if he's just passing the buck!

    As for the pins and needles, I do get it from elbow resting, usually within minutes but also get it randomly when not! My little finger was tingly the other day like a trapped nerve so I guess it could be that as I do have neck problems that flair up from time to time.

  • I don' t understand the dynamic between the gp and the endo. My endo would only recommend meds to my gp but would not prescribe them, so it's not like they work any special miracles. Perhaps the gp just feels better getting the opinion of the endo, and/or the opinion of the endo protects the gp should anything go wrong down the line. But as far as 'power' is concerned, I think the general protocol is the same for all doctors (can only prescribe once the tsh is over 5 if not 10, no consideration for the other numbers) and few tend to stray very far from those guidelines. In that sense it is passing the buck because it sounds like your gp would like to treat you but is aware that he isn't allowed to and is hoping the endo will grasp the nettle and take this dilemma out of his hands. But the endos seem to be even less flexible than gps.

  • Hi FallenAngel22,

    Just a quick note to ask if you had your blood glucose checked with a Fasting Test? I'm only asking because although it could very well be your thyroid, it's also a good idea to eliminate other conditions that sometimes display similar symptoms such as Type 2 Diabetes or indeed a variety of other ailments.

    My neighbour was recently diagnosed with Adrenal Fatigue and her symptoms sounded similar. The process of elimination can be draining and frustrating but I think it's better than focusing your attention on just one thing when it could possibly be a combination of things or something else altogether. Once you know for sure, you can concentrate on the management of the condition.

    Not knowing what's wrong but knowing you're unwell can be very frightening.

    Wishing you knowledge, discovery and enlightenment in the very near future and all the best with the Endo.

  • I don't understand the GP/endo thing either! My GP led me to believe the endo had more power to prescribe a trial dose because he can't. I will ask him again today when I see him.

    I have had my blood tested for most things (not sure on vit levels) and not diabetic or coealic. I did want to ask people though, can low blood sugar exacerbate thyroid? I was shopping in town the other day and had to get something to eat as I felt so weak and faint. It didn't go completely but did get a bit better. This has only been a problem since I started with all these symptoms in 2011.

  • I can relate with what you say I have requested some blood tests because a few weeks ago felt like I was in a black hole once again , Can happen periodicaly 2 to 3 monthes feel like im losing it sleeping heavy get up feeling like I got a hang over don't drink tired later in the day dont want to go anywhere want to cancel my daily activities don't want to drive trembling tearful all the time brain fog affecting my eye sight you name it I had it,Also hot sweats lasted 3 wks then just passes now cold all the time especially hands and feet have heating on high, But feel normal again so why do I keep getting these depressions can anyone relate with me .Hate being like that the anxiety is the worst ?/

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