Hi everyone - I am in a real dilemma and don't know where to turn, as I don't think Thyroid UK can offer me advice on this. I'm sure I have underactive thyroid (test results were borderline) but the doctor has diagnosed fibromyalgia, which I definitely DO NOT have!!! Where do I go from here? If I don't start to feel better soon I will lose my job. Any suggestions gratefully received.

123 Replies

  • Really sorry to hear you are not feeling well. Just out of curiosity why do you think it is definitely not fibromyalgia? They have a lot of similar symptoms such as the fatigue, Memoery problems and joint pain.

  • Hello Karen - thank you soooo much for replying so quickly. The reason I think it's not that is that the joint pain is extremely mild, and some days I don't have any at all. The overwhelming symptom for me at the moment is fatigue (plus as you say, memory problems) and feeling cold all the time. My TSH is 3.44 and T3 is 8.

  • Do you have a range for that T3 results, please? It looks high.

  • Yes - he said TSH top level is 3.5, and T3 is 8-21 (I think)

  • Always best to ask for a print out, that way you get all the details, not just what your doctor choses to tell you. It's also important to know the bottom of the range. And, to know any other tests that were done at the same time. Did he not, for example, test FT4 or antibodies?

    Your TSH says that you are hypo. But, your FT3 says that you have a very good level of T3, which is contradictory. And, I am wondering if a decimal point hasn't been left out somewhere, or something. If your doctor had any sense, seeing those results, he would ask for them to be redone.

    But, you could redo them in a private test. And, whilst you're at it, also test antibodies and nutrients :






    vit D

    vit B12



    That will give you a better idea of what's going on.

  • That's interesting greygoose, I did ask for a print out and he refused!

    You're amazing, I can't thank you enough for that list of categories to test for. I have just emailed a clinic to ask for a private test, so I will forward those as something that I am requesting.

    I think I wrote F3 instead of F4. So confusing to a newbie! But I think thaht's the way the GP likes it ;)

  • Ahhhhhhhh OK! That makes more sense. I didn't think of that. Yes, so that confirms the hypo.

    It is confusing, but you soon get used to it. :)

    Oh, and on what grounds did he refuse you a print-out? If you are in the UK, you have a legal right to a copy of your results - either a print-out, or you should be allowed to see the screen, and write them down yourself. :)

  • And, whatever you do, do not accept a diagnosis of fibro!

  • Though Fibro and HypoT are linked. I believe Fibro tends to be more a symptom rather than cause and if thyroid not treated, fibro will gradually get worse, along with everything else. Fibro was definitely a symptom of my inability to convert t4 to t3.

    Best of luck.

  • That is interesting as I can't convert T4to T3 and dystonia followed and now the T3 has been withdrawn and I am feeling very unwell

  • Ann-Simpson Search and check out my reply from CMO - outlines guidelines -if existing t3 patient clinical benefit should not be refusing? That's how I read it anyway.

    I'd push for 'clinical' to me visibly and not 'blood test'.

  • Well it was weird really - I just said "Can I have a print out?" and he said "Why, do you have a friend or someone you know that's training as a GP?" (I don't but I said yes). So he then wrote them on a post-it note.

    I definitely won't accept the fibro!

  • He has no right to ask you that. They are your results, you are entitled to them BY LAW. The Data Protection Act of 1998, in fact. So, tell him to stuff that in his pipe and smoke it!

  • Hahahaha! Great advice. As I walked out he said "Cool beans" which I wasn't too impressed by!!

  • What does it mean?

  • I'm think it means "great" as in "That's cool".

  • What a strange thing to say.

  • Exactly, it definitely was NOT cool beans!!

  • Maybe he was referring to himself, thinking he'd got one up on you?? Sounds like that to me. Maybe you should put in a complaint. Unprofessional at the least! And totally agree with Angel-of-the-north's comment! Is there another Dr in the surgery you could see in future?

    Unfortunately you will have to face this attitude, as it seems to be getting worse - more widespread as more and more of the younger Dr's are brainwashed into thinking that all us Hypo's out there are to be disregarded as manic depressive hypochondriacs! Amongst other things! My opinion, this is, that's 36yrs worth of experience! What do I know, only been living with it most of my life - if not all, like many.

  • Very odd?

  • Self-important Tw@t ...

  • Hahaha love it!

  • Are you in a practise where you can choose a different doctor?His attitude is very,very common,but unacceptable & obstructive in your search for health..I asked someone I trusted when my lovely female GP emigrated to Canada & my new GP is as good as it gets(both females)

    I have had to explain to her that I will not be seeing the arrogant,ignorant,brainwashed control freak of an endocrinologist who refuses to treat me unless I give up the liothyronine(T3) that has improved my health & go back to thyroxine.

    She has agreed to monitor me,although I will be buying my own T3 on the internet & taking it with my NHS thyroxine in future.

    Doctors who try to control access to information about our health are bad news

  • I completely agree Naomi18. What valid reason does he have for keeping knowledge about my own body away from me, other than that it perhaps gives him a sense of superiority. My mum used to work for GPs and she always used to call them "little tin pot gods!

    Wow, it must be nice to feel so superior!!

  • The way they have been trained encourages too many GPs & specialists to believe rigidly that what they have been taught to be the facts about thyroid disease are 100% accurate.They are therefore of the opinion that anything deviating from these"facts"are a threat coming from a neurotic deluded patient who is going to be a problem,ie "be difficult,a nuisance,hard work.

    In the process,they lose understanding that our experience of the disease,our loss of wellbeing,and all other symptoms are valid & a direct result of the disease & its poor management,rather than due to other causes.

    Due to the pioneering work of the patient advocacy movement that lead to "Thyroid UK" "Stop the Thyroid Madness"etc,we are learning to get well IN SPITE OF,rather than,with the help of doctors like these

  • That's really encouraging. I think you're right, if a GP recognises the condition it represents more work for them.

  • How very true. And these dr's are suppose to be scientists - I wonder how many of them still believe the world is flat!

  • And neglectful!

  • And unworthy of the title DR

  • Where do you buy the T3 I am desperate to find it having had it withdrawn from me after many years of being very well on it Ann Simpson

  • You have the legal rights to all your med. Records here in the U.S. as well.Demand. Im a retired R.N. of 40 years.get a second opinion .I have graves dz.Sounds to me as if you need more test to rule other auto immune dz.

  • I too have graves dz.Was diagnosed years ago.All my sis.and brothers as well.My older brother died of thyroid storm.Have you been seen by a endocrinologist.I suggest you see one if you havent.I know how you feel because I have all those symptoms as well. In addition to taking synthroid my endocrinologist put me on liothyronine.Its a old drug used for treating hypothyroidism but it made me feel so much better.Ask around to see if you can find a reputable on..

  • Lulujewel,

    I think it is probably T4 which is 8-21. T4 is bottom of the range and TSH 3.44 is almost top of range if it stops at 3.5. Your symptoms are almost certainly due to low thyroid. NHS doesn't usually diagnose hypothyroidism until TSH is over range ie 3.5 if that is top of your lab's range, or until FT4 is below range.

    You should ask for another blood test in 3-6 months as TSH might be over range or T4 below range then. Arrange an early morning blood test when TSH is highest and fast (water only) as TSH drops after eating and drinking.

  • Hi,

    Thank you so much for that - it's more than likely that I wrote T3 instead of T4 as I was so flustered and confused. I had pinned a lot of hope on that appointment and was so upset afterwards.

    My blood tests were at 9.30am, and I probably had tea and some form of cereal bar at about 8.30am. I will do as you say and book another test, and fast.

    I can't thank you enough; I'm not a hypochondriac, or lazy, or a wimp!

    I get free prescriptions anyway as I have epilepsy so they have nothing to lose financially by describing me thyroid replacement.

  • Lulujewel,

    I really don't think that diagnosis is denied to save the costs of free prescriptions.

    Don't let anyone tell you you are hypochondriac, lazy or a wimp, low thyroid can make you feel absolutely dreadful.

  • I'm almost crying here with relief at your understanding and kindness! I mentioned the anit-epilepsy meds/ thyroid link but the GP just brushed that off. I've been on the for 20 years, my Mum has sub clinical hypo, and my Nanny had a goitre - the clues are there!!

  • LuluJewel,

    It sometimes helps to have suspicions confirmed but it is only really useful if your GP accepts that your treatment is causing low thyroid and prescribes Levothyroxine to restore thyroid levels to euthyroid ie TSH around 1.0 with FT4 in the upper range.

  • Lulujewell,

    Your anti-epilepsy drugs may be causing hypothyroidism

  • With free prescriptions who's budget do they come out of - the GP's or central? Anyone know?

  • That range looks more like a T4 range rather than T3.

  • Thank you - I think I wrote it down wrong. I was very confused and anxious in the appointment!

  • Lulujewel have you mistaken the T3 result for a T4 result? That range is more like the one for FT4. If that is the case, then with the TSH at 3.44 you need to be started on treatment.

  • Hi j-bee - yes I'm pretty sure I've muddled them up. I'm so anxious about this that I'm quite confused. According to the thyroid UK website I do need treatment - I just can't get anywhere with convincing the GP. I definitely don't have fibromyalgia, whatever they may say!!

  • My TSH level is 4.10 and my GP told me he won't treat me until it is out of range (5.5) also I have antibodies of 76

  • You need to post ranges for your blood tests. You should get TSH, Free T4, Free T3 and antibodies and then post the ranges. My doctor started me on levo with my TSH was 3.91, and I feel so much better 7 months later.

  • I don't understand why I'm not getting treatment, mine is 4.10

  • I hope this helps you a little. I am talking in context to myself but you may find some of this helpful. I have an under active thyroid (UAT) and take 100 mg of Levothyroxine per day. I have muscle weakness, general pain all over, last summer was the worst because my feet were so sore. I started taking Magnesium Malete for the pain, V-D3 for my bones along with K2 (from NATTO fermented soya beans, I know we should not eat soys because of the gouitrogens but they are broken down with the fermentation process). Mu tail bone was very painful I could only sit on my bottom cheek switching back and forth....I was in constant agony. My GP was an idiot who told me to go get a massage when I expained that I was finding it difficult to hold my friends baby, hang up the washing, blow dry ny hair and that my shoulder was so painful. Eventually myself and a woman I work with who has had thyroid cancer worked out we had similar inflamation symptoms so we googled it and discovered that I was probably suffering from fibromyalgia. I insisted my GP send me to a rheumatologist who said I was low on Vit-D3, calcium, and magnesium, she explained that our muscles send signals through to other muscles by way of the nerves so they need Calcium, magnesiun and V-D3 to act like an conductor or aid to send messages, if your low on these you will feel more pain.

    I now take, Vit-D3 5000 mg, magnesium but also Vit-K2 which is needed to act like a bus picking up the Magnesium, Vit-D3 and the calcium and to take it to the parts of the body where it was needed. Magnesium Malete is brilliant for Fibromyaliga which some of people who have an UAT develop, it has helped me to sleep for 4 to 5 hours sleep a night uninterupted...OMG it is haven being able to sleep! Buy Magnesium chloride flakesand make a Mangesium oil equal parts boiled water to flakes, which you can spray on to your skin Magnesium can be absorbed transdermally but I take the tables from a company called Source Naturals Magnesium Malete you can get them on amazon UK and COM. I have also started taking D-Ribose which body builders take for energy. D-Ribose activates the Adenosine triphosphate (ATP) is a nucleotide, It is often referred to as the "molecular unit of currency" of intracellular energy transfer ATP with the cells to give use a burst of energy, it is the molecule that carries energy to the place where the energy is is super good and helping to make you feel NORMAL again another benefit is it can help reverse heart disease which folks like us are prome to.

    Take Vit-B12, all the B Vitmins except folic acid which is synthetic go for Methyal-Folte. I mentioned B12 and B vits because the B vits are essential for thyroid health. It has been shown that patients who have autoimmune thyroid disease also have pernicious anemia (vitamin B12 deficiency) and gluten intolerance. Pernicious anemia can occur when the body is producing antibodies to intrinsic factor which is required for vitamin B12 utilization. I am in the process of dumping the wheat but I have not been very sucessful as yet. Studies have linked gluten intolerance to autoimmune thyroid by a mechanism called molecular mimicry. This occurs when the body’s immune system identifies a dietary protein such as gluten foreign to the body but also attacks it’s own tissue which is tagged by the immune system. Constant intake of gluten will lead to a constant attack on the ingested protein as well as thyroid tissue.

    Anout a year ago I began taking Bladderwrack for my thyroid and the fat which i have collected over theyears on my tummy and around the tops of my arms started to happy with that.

    So sorry I did not mean to write a book but I hope you find it useful.

  • I would totally leave it to a reputable doctor to interpret labs. Speaking from a nurses perspective that could be totally dangerous. Im a med.surge and oncology nurse as well. I also have graves dz. If you can please find a endocrinologist .

  • Fibromyalgia symptoms are muscle pain ,not really joint pain.

  • Fibromyalgia affects your muscles , not your joints.

  • HI Lulu

    You are so young. I was diagnosed with glandular fever when I was about 12 years of age, of course, there were no blood tests back then I was diagnosed with a sleeping sickness was told to cut my long hair off as it was taking all the strength out of my body did that and nothing ever changed. I couldn't play sport as I came from a sporting family but I would get exhausted. I was classed as the lazy one in the family but I would never give into it. If I sat down I would fall asleep.

    27 years later I was advised to swallow radio active Iodine as I had an over active Thyroid - they overdosed me and I have been on Thyroxine ever since which by the way doesn't have T3 in it - I live in Australia and our rules and regulations are different. I developed CFS after that and have lived with it ever since I could write a book on it all -have suffered from everything that goes with CFS I really feel for people that suffer with it - I find it affects people differently unless you suffer with it yourself no one has a clue what the sufferer goes through.

    I didn't sit back and wait for the Drs to try and fix me as they didn't know what to do at that stage I went looking at alternative medicine so find your self a good Naturopath and between the both of them they can work together I suggest you watch your diet and believe it or not I took up snooker and watching those balls running around the table took my mind off my pains and aches I would lean on the table as my body was aching so bad- you have to have an interest may be meditation, but nothing strenuous until you feel that you can do it. - I could rattle on here for hours. Everyone has a different story to tell. so hope those couple of hints will help you.

  • Oh bleurgh, the dx process for fibro is just identifying a collection of symptoms anyway. (Not saying it isn't a legit dx, just that it can be used unscrupulously as a shortcut by docs who don't want to look at treatable conditions you can test in a lab because it might all get a bit longwinded.) I think because this is TUK the advice generally would be to persist w trying to get a thyroid diagnosis and to continue to exclude other things.

    Have you had antibodies tests? How does gp know it isn't RA or Sjogren's (which can also present w joint pain and fatigue)?

    Have your thyroid antibodies been tested? If positive you will be headed for thyroid issues anyway, it's just a matter of time. It is advised that tsh testing takes place as early in the day as possible and on an empty stomach.

    Cute specs btw! :-)

  • Oh wow, thanks for all that info!

    You're right, he did bloods for all major organs, thyroid and autoimmune diseases. Only thyroid as a bit odd, so he gave me a fibro questionnaire (!) and diagnosed that. I definitely did feel as you said, that he couldn't be bothered to look into it further, fibro doesn't need any prescriptions, so let's just put her in that box.

    Since the appt I've also read that he should have done a test where he presses joints to see if it hurts - didn't get any of that.

    Might go private and get the full test done.

    Thank you, I hate wearing glasses so that's kind of you!

  • Glasses are jewellery for your face! :-)

    Yes, that's exactly what I mean about fibro, that giving someone a questionnaire and a diagnosis on the basis of the questionnaire can be their transparent way of making you feel like your concerns have been dealt w. Like what more do you want, I have diagnosed you w this random thing, don't you feel listened to?

    Would be good to know what tests were carried out and what the results were. Do you get copies of your test results?

    If you have raised thyroid ABs and your tsh continues to rise (I suspect they will want it to be near or over the top of the range and/or t3/t4 low or below range) it would not be unreasonable to ask for a trial of levo.

    You can order private tests via Blue Horizon and Medichecks and you can even do some at home w a fingerstick, but as treatment is contingent on your gp's ok it is often better to push the point w them as your first effort.

  • Ok thank you, that's excellent advice. I need to check these ABs I think. He refused a print out and just scribbled TSH and T4 on a post it note!

  • Oops, I call bs on that, you are entitled to your own results I'm afraid. Outraged on your behalf actually. Who does he think he is?

    If he continues to refuse you can make a written request. Info here:

    Just think about whether you want private tests for your own satisfaction or to get treatment. They can turn out to be expensive and useless if you find your doc won't act on them (and that seems to be the usual stance). If you decide to pursue self-treatment it's a different story, you will be using those results to monitor yourself.

  • Oh thank you, that's kind. Since chatting here I'm starting to realise how badly I was treated. When I walked in he was looking at a camera on Amazon, so he was probably keen to get back to that!

    How would I pursue self-treatment?

  • I will pm you. This is the TUK official policy:

  • Wonderful, thank you :)

  • :-)

  • Lol, that must have been so annoying! You know what it's like, you start to research something on Amazon and you get interrupted and have to start all. over. again. No wonder he wanted to get rid. :-D

  • Hahahaha I know! Patients must be so annoying for GPs!

  • Lulujewell,

    If you start self medicating you will never get a NHS diagnosis. You are so close to top of range for TSH and bottom of range for FT4 you will probably be able to get a diagnosis soon. It would be better to see another doctor if you have no confidence in the GP you saw.

  • That sounds like a great idea. I'm feeling worse and worse by the week, so hopefully it won't be too long before it shows up on the bloods. I wouldn't dare to self-medicate anyway, especially given my epilepsy meds. I will book another appointment and keep my fingers crossed (and also hope that I can hold down my job in the meantime - I've already given up on the business I set up due to fatigue).

  • Lulujewel,

    Show the GP the links about epilepsy drugs inducing hypothyroidism and tell the GP that fatigue has caused you to give up a business you set up and you are worried about it impacting your ability to hold down your job and ask for a trial of Levothyroxine.

  • Ok I will. We do have a family doctor that I couldn't get an appointment with last time - I think I will make an appointment with him. I know I've said it once, but I can't thank you enough for your support today, you've been amazing x

  • Just to be clear, I am not advocating self-treatment, certainly not at this early stage when your results are largely unknown and w other conditions alongside that may be affected. I am pointing out that private tests are useful when, say, self-treating and self-monitoring, but less so when you're working w a doctor who is likely to take no notice of them

  • That's really clear, thank you. Looks as though the initial attempt will be badgering the GP :(

  • I think many have already had to give up jobs, myself included. It is not unusual. Try to keep going and stay positive, you have taken a huge step forward finding this forum (I only found it recently...been on TUK thousands of times and not had the energy or 'something' to join, but so glad I found it and did. Lots of people on here have great advice and invaluable support. You are not alone.

  • Thank you - I'm desperate to hold onto this job, and only got it at the beginning of Feb. HOwever, they are lovely people (a charity) so I think they will stick by me as they are always thanking me for my hard work, which I've never had at a job before.

  • Agree with Clutter, if you can get a diagnosis from NHS - safeguard. Future GP cannot deny.

  • A Dr saying to you 'Cool Beans' and looking at a camera online is absurd!!! - what an absolute moron. You must have felt like saying to him ' am I interrupting you' ......

  • Suppose, having test results might be a starting point to find a dr that will help. If you have no results to present, other dr might try to fob off too. Presenting actual results might avoid that - and you will then be looking for someone who will acknowledge and treat you, accepting that there is an issue, if that all makes sense? Sorry -waffling.

    Considering getting tests done for 22yr old son - he's seen Dr P, we know he has adrenal issues - clinically clear to a novice! His own GP's seems to be testing him for everything but the screamingly obvious. I'm thinking if we have blood test proof - they cannot completely ignore it - but will take advice from Dr P.

  • Sadly I think they can and do ignore private tests and then, because the way they see it you've burned through all the wisdom the nhs has offered and have opted to go off piste like a health-obsessed nutter, you also have a target on your back.

    I am wary to the point of being paranoid about bringing anything 'unsanctioned' (private tests, complementary medicine, supplements etc) to the nhs. I will no longer expose myself to their scorn because one day I may need them for something that can't be treated w acupuncture and if they think I'm a hypochondriac mentalist I would fully expect to be passed over for treatment.

    I was advised to write a letter to my gp when I first had a hiccup w my thyroid treatment (I was diagnosed and then un-diagnosed because I delayed treatment) and I will never do that again. I am sure it incurred their hostility.

    Good job they are so overwhelmed now they never get to look that far back on my record. (I'm being sarcastic, there is nothing good about it.)

  • Thanks for that advice - I'm inclined to agree with you. I never mention private treatment (I once paid for private psychotherapy) as they then totally label you mentalist/ hypochondriac/ nutter/ time waster.

    It then gets to a situation where you are damned before you even walk in the door!

  • Oh I think I have had a target on my back long before I went the private route - because when he was quite young, I asked for my son to be checked for thyroid - symptoms - coldness, lethargy and fatigue, dry skin, difficulty concentrating, despite being a bright lad. etc etc... Of course did tsh - refusing to do full function testing -as not necessary, despite it taking me 12 yrs + to get a diagnosis and my THS needing to be c0.01 for me to be well....usual rubbish. He has 'seasonal' asthma... (thinking 'air hunger') has had some major bouts of illness this last 5 years (22yrs now) he has forfeited a rugby scholar and is now 2yrs behind with studies - due to illness. Increasing symptoms - Dr P diagnosed adrenal issues - GP's looking at everything but...

    I'm fairly certain that I now have 'Munchausens' attached to my name along with the Hypochondriac, pain in the...etc.

    My GP was quite supportive when I told him I was going to see Dr P - 7 years ago -asked him for his support and I then kept him informed of what I was doing and over 18 months or so got to the best health level ever, using t3 only. GP accepted this and just monitored. Unfortunately this gp retired last year so fell like leapt back about 20years with the attitudes!

    gp attitudes often the biggest hurdle.

  • I have had some results (TSH 3.44 and T4 = 12) but he said these weren't bad enough for treatment. So I just assume I have to wait until I'm practically dead with exhaustion, beg for another test and hope that the results are outside the borderlines next time (although he did admit that they were very low).

  • I can understand why, but as marigold 22 said, on here yesterday, what if something happens and you are incapacitated, needing emergency would hospital staff know you were taking medicines if self medicating? I'm not dissing self medicating - totally understand the need, but I think, going forward, this could be a big issue, and I can see gp's refusing to have you on books if they find out you are trying to help yourself...even though they force the issue!

  • can you get the receptionist to print for you - I never ask my doctor directly ... Shame you don't have your T3 result ! Your T4 is really low too - good luck

  • I will - some of the receptionists are friends of my Mum's (she used to work there) so I'm sure they would be happy to. Great idea :)

  • Use all the connections you have!

  • If it helps, this is my 'method'. I ring the surgery and say I'd like to collect a copy of my test results, can they please tell me when would be a good time to collect them. Sometimes they have to be signed off by a gp but I assume that's because they want to make sure they haven't missed anything that they need to talk to me about, which seems like a due diligence thing (we'll skim over whether or not that makes any actual difference to the way my results are handled ahem). Then I go in and they are waiting for me at the desk.

    This way there is no asking permission or grovelling, just the statement that I will be in later, tomorrow, whenever it is convenient for them. It works for me, maybe it will work for others. My surgery are not all complete b******s (most of them anyway) so that's something.

  • That's a great way to do it - positive and assertive :)

  • A coward never asks. :-)

  • Before considering going private or self-treatment,why not change practise or even see a different doctor in your present practise?

    It is your right to have the appropriate tests & a print-out of the results.

    Why let an arrogant passive-aggressive GP intimidate you into having to pay for standard tests & the standard proceedure of a print-out of those results?

    Many of us on this forum do pay for private tests,but we should not let those in authority deny us our NHS entitlements

  • Yes, all true. When we pay for tests there is a reason for it. I do my own meds adjustments after years of being messed about w reducing my dose. Now I make sure I know my own levels regularly and gp knows them on a need-to-know basis. There is usually little point in paying out of pocket unless you have a solid plan for using your results.

  • Thanks Naomi8 - I have called the surgery and the best they can offer me is a phone appointment on 20th April which I have accepted as I am desperate and will cling to any lifeline at the moment. You're so right, I shouldn't have to pay due to being patronised and initimidated.

  • I wonder how much of the thyroid issues could be alleviated if anti-body testing was done when initial symptoms develop, rather than waiting the no of years/decades for the damage to become so advanced that, yes you might then get a diagnosis for Hypo T, but too late to save the thyroid. How many of us on t3 would not have needed it, and could have managed on t4, if diagnosis had not been delayed so long? (In my case 12 years! I'll bet others can beat that...NO diagnosis at all!)

    Regards and best to all

  • I live in Greece and have done for 14 years. I once heard of Greek Doc proclaiming to a patient - you have a thyroid problem - as she entered his room ! He said it was because of the necklace type wrinkle on the neck - and that the body always indicates what is wrong ! I now see it often on both men and women :-) Nothing scientific you understand - but this forum is open minded enough to consider many aspects when trying to reach a diagnosis - thankfully :-) I can just spot yours in the great pic you posted.

    I am off to find a link I once came across linking low B12 to epilepsy - when looking for a friend with the condition.

    Lots of good advice from everyone - so do keep posting and asking questions ....

  • I think that is so true - an observant Dr - how rare! I see the signs in so many people I know - family and some friends - both hypo and hyper. I am not medical but the signs of potential problems are there if you know what to look for. I think gp's re just not taught to do clinical assessments like they used to - when was the last time a gp actually took his fingers off the keyboard and looked/touched us? I realise it is often the fault of time restriction, but really that is no excuse, that is down to mismanagement and forcing people into constant re-visits because they won't accept the symptoms, of the patient in form of them and treat them accordingly - they are too busy looking to cover themselves by reading a blood test.

  • I find the same - half the time they don't even give you eye contact when you're speaking, which again makes you feel belittled. I completely agree - if they were able to take a little more care thousands of revisits could be avoided.

  • Is it possible to source T3 from Greece?Ann Simpson

  • Click onto my name in this post - then click onto POSTS - and you will see the one I wrote recently about the problem if you scroll down a little.


    Here is the link above for Private Testing Kits to be sent to the home - through the main Thyroid UK website. As you can see Medichecks also have an offer currently :-)

  • That's wonderful Marz, thank you so much. I can't believe how kind and helpful you are - I genuinely didn't expect any replies at all! Maybe I need to see a doctor in Greece! I will take up the Medichecks offer. Thanks for your time and support x

  • If you ask Dr google - Low B12 and Epilepsy PubMed - you will come across many research papers - which may or may not be helpful. PubMed is a useful research tool - all research papers done globally are stored there :-)

    Will look out for your posts :-)

    The link above takes you to a list of B12 Deficiency signs and symptoms and more .... Scroll down for neurological ones .

  • Thank you Marz! :)

  • Hello Lulujewel.

    We haven't got the same GP have we LOL? When I nearly crashed my car three times on one journey due to my falling asleep at the wheel my GP wanted to send me for sleep apnoea tests.

    I recently had tests done (see other posts) but T4 and T3, ferratin were not included and my GP does not see the need to do these even though I have Hashimotos and have low Vit D and B12.

    On the recommendation of others on this forum I have sent for two sets of tests from Medichecks, one for complete thyroid and the other for B12, folates and ferratin.

    The tests were £69 each but I will consider it money well spent if I can have some more answers and ammunition when I return for repeat B12 testing in 6 weeks time

  • Hi Megluka

    I think we have! I simply cannot believe that even with patients coming to them saying I've crashed my car three times (I even TOLD him that 3 times!!), I've almost lost my business and am struggling to hold down 2 days a week, they send you away with some 'token' diagnosis.

    Thanks so much for the medicheck recommendation - I would be really interested to hear how you get on with those tests. I've made a phone appointment with our family GP, so I'm hoping I will be able to convince him to run more tests. <sigh>

  • I find they switch completely off when I start asking for things to be checked or dare to make suggestions for things to be considered! It is as if I never spoke or speak a different language!

    Good luck, hopefully your family GP will have a bit more understanding and compassion.

    I would not wish this condition on anyone, not even ignorant gap's, tho, have to admit, the thought has crossed my mind - maybe then they would understand.

  • Hi I have had a thyroid result come up low and they wanted to send me to a specialist, I had to get all new everything so I can't see a specialist yet, I too have a fibro diagnosis, I don't know what to do about your thyroid problem yet as I don't know what to do about mine, but I can tell you, DO NOT take Lyrica if they give it to you, I know there's a class action lawsuits and it isn't for pain in any way, I am on it and it's nearly impassible to get off, take care, here's to figuring out our thyroids!

  • Hi Inmyfeels29

    Thanks so much for that great advice - I have made a note of Lyrica to ensure that i don't accept it. The advice from these lovely people for us at this stage seems to be to keep hammering away at the GP for more tests, and to make sure you have your bloods taken early in the morning after fasting (water only).

    To be honest I would rather he had said nothing than giving me an incorrect diagnosis just to make me go away. I was very depressed when I thought it was fibro - nobody wants that. I'm determined that I know my body better than he does though, and i know this is hypothyroid.

  • You're welcome, I really hope we both get out thyroids taken care of asap, I hope my new gp listens, I think I have enough blood again for more tests lol, I have almost all symptoms of hypo, I was told the last test that something was outdated in the process, it's so hard but we'll hopefully get it sorted, best of luck!

  • Yes I hope we do too - at least there is some comfort in knowing that somebody else is in the same boat. Wishing you loads of luck - maybe by this time next year we will both be happy and healthy again??!!

  • That would rock! :)

  • My personal advice to you both, Inmyfeels29 and Lulujewel, is to read as much as you can around this subject. As I said earlier, fibro can be a major symptom of thyroid/adrenal deficiencies, thyroid affects every cell, after all, . I found Dr P's book to be a great place to start - written so even I could understand most of it - was like reading my life story! Might give you an overview of all the connected issues - you'd find it on TUK site - along with other useful publications. I keep buying it and end up giving it to others struggling with the condition - need to buy another one - this will be 4th.... Obviously this is my own personal opinion as this helped me, gave me 'ammunition' in the form of knowledge to ask the right questions and to query things I was told - so when I was told there was nothing but t4, I knew there was, and could put the gp right on that one - in the nicest possible way, of course! And when he told me that t3 stays in your system for a long time, I could tell him that it had a much shorter half life than t4 - (hence -also making it more expensive)...but does stop them trying to fob you off a bit, I find.

  • Sounds great, I will track the book down on the TUK website. Thank you

  • Hi, I had exactly the same, and actually gave up a career because of my health. I was even misdiagnosed with Lupus. The consultants spoke of Carpel Tunnel operations rather than give me medication. They told me that I risked a heart attack if I took the medication - this frightened me off for a while but I was so symptomatic that I went back again. This time I felt it was worth the risk as I was not enjoying life feeling so ill all of the time. I suggested that I was at greater risk of heart failure and stroke if it wasn't treated - the Dr decided to take another test and consult with colleagues. She took me seriously this time and asked me to come back to discuss the results (I've always felt fobbed off before).

    When I returned The Dr was incredible, she referred me to orthopaedic and physio team to help me cope with the pain and as my thyroid levels had dipped further she gave me levothyroxine. I only took 50mg a day as I am in my 50's and still pose a health risk due to family history but the difference was incredible and I felt some relief within 36 hours.

    I would say to you that you should persist but know if you have any health risks so that you can weigh up the pros and cons; list your symptoms so that you are not trying to remember on the day - always remember what we should have said when it's too late! And note how each of your symptoms is affecting your life - for me the tipping point with the Dr was when I told her that my hands and arms were in so much pain and swollen that I feared that I would not be able to look after myself, so seriously think about the things that you have stopped doing or the things you need help with, like putting on socks etc.

    I really feel for you and I hope they help you soon x

  • Hi Dee,

    Thank you for your lovely kind reply. It's a really good idea to take in the list of symptoms - my mind tends to go blank with anxiety, and then I underplay my problems as we've all been brought up to do so! Stiff upper lip and all that.

    I'm going to emphasize the car scrapes and near accidents, as well as the loss of my business (well, nearly - i can't keep up with it much longer). I'm desperate to hold down the 2 days a week I have at the moment, but in order to function on those 2 days, I have to rest/sleep the other 5 days.

    My quality of life is rapidly declining, but it seems as though it has to get worse still for me to be treated. I really hope I will be like you and find some relief from levothyroxine, if I can get them to give it to me!

    I'm glad you're feeling more healthy now - long may it continue! xx

  • I too run my own business and appreciate how hard it is to keep it going. Try a different doctor, they should be looking at your symptoms as well as lab report. Someone mentioned that gluten can cause joint pain and I would agree with that, I'm much better on a gluten free diet so that might help. I also make sure I have selenium as this helps the thyroid, I like eating so I chop up a couple of Brazil nuts and have with yogurt and fruit! - might be a good way of introducing the vitamins and minerals you need without the gluten.

    Hope you feel better soon ⚘x

  • Sounds like a great idea. I like brazil nuts (and fruit with yog) so it will be easy for me to add those in. I will also look into gluten free, and a friend mentioned the AutoImmune Protocol or the Wahls Protocol for autoimmune diseases. Thank you for your sympathy; I'm hoping I don't have to give up the business as I started it 6 months ago and it's really climbing high now, but my health has to come first. xx

  • I started my own business so I could slope off in the afternoons for a sleep - back in 1993 - after demanding and exciting careers. I retired early in 2004 and was diagnosed with Hashimotos here in Crete in 2005 at 59 :-)

    Having had a long life of complicated health issues I had blamed everything on that - so did not visit the Doc unless I was desperate. Blue flashing lights spring to mind ! Discovering I had Hashimotos was the beginning of my journey to wellness.

    Click onto Marz in blue above and you can have a read of my Profile - only a couple of minutes. So taking control is good and taking care of ourselves is what we have to do to find wellness .....

    You can do it :-)

  • Wow Marz, that's exactly why I set mine up! And sadly the lethargy is also the reason that I've chosen not to have a family. At 37, it will be probably be too late by the time I get treated.

    I too have had other health problems that I have been blaming this on, but the danger element now is making things urgent. I blamed the symptoms on my increased weight for a long time, but having shed a bit of it, nothing changed.

    I will definitely take a look at your profile, thank you sooo much for your encouragement :)

  • Good luck, hope it helps 🌷

  • Joint pain is also associated with gluten sensitivity. It may be worth a gluten free trial to see if your symptoms improve.

  • Thanks Josiesmum - that's really helpful as I've been looking into dietary changes that might have a positive effect. Gluten free food seems widely available nowadays (or more so than it was!) so I will give that a go.

  • My daughter went on an anti-inflammatory diet and going gluten free and low sugar really helped with joint pain. It's important to have lots of veggies to make up for the lack of wheat fibre, and also worth cutting it gradually over a couple of weeks so it isn't such a shock to the system. M&S GF brown bread slices are good but a bit pricey. Other than GF bread she mostly eats other foods rather than gluten substitutes as they tend to have lots of sugar and additives. Probiotics (Biokult) also helped with her gut issues.

    Good luck x

  • Wonderful, thank you. I was looking at the autoimmune protocol - rather strict but I'm pretty desperate at the moment! I will look into Biokult too. Thank you x

  • This is a good website on AI, again I would recommend changing diet over a couple of weeks to give your microbiome time to adjust ;-)

  • Whereabouts do you live??

    I run a thyroid support group - we are meeting in Solihull on Saturday.

    Many of us are fobbed off until our TSH goes above 10, for many people it never will which is why the TSH blood test is just rubbish!

    Many of us are well since taking matters into our own hands.


  • And the damage done waiting for a diagnosis - irreparable!

  • See another doctor asap! Be stubborn and persistent. They are not God, and one doctor doesn't necessarily know all the answers. I was told I was diabetic, even though blood tests showed that I wasn't. BUT I kept having hypos, my weight was out of control, I felt rough, falling asleep at the wheel when driving, all sorts of odd things. Struggled to keep working. The cancer was missed in the early stages due to all messing around with tests for diabeties. Am now on Levothyroxine for life, radiotherapy finally killed my thryoid. Also have auto-immune condition, psoriasis. If you can afford it, go for full check up, scans, tests, etc. It's your body and you know it better than anyone else. Best of luck.

  • I have been thinking the same thing for years, it was only when I went to the memory clinic that they told me my calcium levels were elevated and had been for some time. He was shocked to learn that I didn't know about it as my doctor hadn't bothered to tell me. The clinic said I must go see my doctor and tell him it needs sorting out. When I did this my doctor dismissed it and said not to worry as its nothing. Luckily there are 4 doctors in the practice and another doctor sent me for tests and I was diagnosed with hyperparathyroidism disease. That was a year ago and I am still awaiting treatment. So TELL your doctor you need to have your blood calcium checked. Also ask for a vit D check while he's at it. Usual symptoms are tiredness, lethargy, brain fog, (memory problems creep in) muscle weakness, headaches, low vitamin D. feeling unwell. Also if your thyroid is borderline you can ask your doctor for a low dose of thyroid medication to see if you feel better. Another option is to go online and find all the herbs containing the highest thyroid enhancing iodine, Buy some empty capsules and fill them with the herb and take them daily. Seaweed is full of iodine. Another thing I found helpful is a MEGA multi B vitamin from Boots, One week on that and my mood picked up, my energy levels were raised, and I manage to survive a full day, but get some vit D and C as well. Hope you find one of these helps you, if only till your doctor sends you for tests, I know how you must feel, its terrible that the doctors just don't listen anymore, I've learned to be forward and tell them what I want, after all, its our right, don't let them bully you anymore, take care and blessings, from .......dottydi

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