Why are the doctors prolonging my agony?

I finally went to the doctors 4 weeks ago after experiencing aches, pains and cramps all over my body for the past few months. I can only describe the pain as a cross between the burn of a work out and the heavy ache of flu. I often wake up feeling as though some has beaten me up in the night, then I'm so stiff I struggle to walk first thing. I'm 33!!

Despite all this I have still been working (where I'm on my feet most of the day) full time (at leat 45 hours a week). Whilst at work I struggle through. After work I'm absolutely shattered. On my days off I tire easily just going about everyday things, whether it's house work or a family day out.

The first doctor I saw sent me for blood tests. Everything came back ok except my thyroid levels were low. He told me over the phone to make an appointment as I may need medication or to be referred. I began to research hypothyroidism and it was like a light bulb moment. I had every symptom going!

Although I'm not over weight I work in fashion so try my best to stay slim. The past year I had really struggled to maintain my weight and every time I tried to lose a few pounds on previously successful plans I instead seamed to gain weight! Because of the failures I just gave up which is unlike me.

I have had extreme fatigue for the past couple of years however I always put this down to long hours, long commute and being a working mum! Sometimes Im so tired by the end of my working day I can barley focus or form proper sentences. I even worry about driving home! It doesnt matter how much sleep I have (I have to get up at 6 every work day, sometimes earlier but I'm always in bed by 10 and have often dozed on the sofa before hand) I always want to go straight back to bed in the morning. I often cancel plans with friends as I just want to go straight home from work and rest. I find it hard to focus at work and am very forgetful in the sense that I find it hard to recall things that have happened or been said.

My skin has been horrible recently and my periods are getting further and further apart. I had often wondered whether I was going to have an early menopause.

I feel the cold more than most (this was always a running joke between my partner, friends and me)!

I think I have carpal tunnel too, I get pain and cramps when I type and click on the mouse at my computer and I get sporadic cramps in my wrists and fingers throughout the day.

Anyway at my 2nd appointment last week I saw a 2nd doctor. Instead of referring me he said he wanted to do another blood test to check the last reading wasn't a one off. Again he urged me to get it done asap so that I could come back the following week as hopefully they could decide on best course of action.

Today I phoned to find out of the results were ready and was told by the receptionist that again my thyroid levels were low and the doctor (this must be a third doctor as she referred to her as a 'she') just wants me to go back in 3 months for another thyroid test to see if levels are still low.

I'm absolutely fuming as I thought it was quite obvious by now what was causing all the physical pain I'm in. I understand that they wouldn't want to put me on medication based on just one reading but I've now had 2 low readings plus every symptom. I honestly can't carry on feeling like this. It is affecting my work and making me depressed. I get tired just walking up a flight of stairs and as I said I'm 33 and not overweight! I feel like I'm 83!!

It was only the physical pain that prompted me to visit the doctor in the first place as I could explain away all the other symptoms.

I feel as though the 2 doctors I've seen have been keen to progress my treatment but now the third whom has not physically examined me is sentencing me to 3 more months of pain!!!

I have never ever had time off work sick (even when I was pregnant and throwing up 8 times a day for 7 months) but I'm starting to feel as though I can't cope with my job anymore. I honestly feel as though I'm going to black out sometimes.

Sorry for going on, it just feels good to get this all down and my questions are, do these symptoms I'm describing sound like I have hypothyroidism? Does it normally take so long to diagnose?

Thanks muchly xx

39 Replies

  • Do not wait 3 mths , i think you should make an app with doc and tell him everything, you should not have to feel so ill . I really wish you all the best in getting diagnosed 😀

  • Thank you, I'm going to take my partner with this time and also my post to refer to x

  • Brilliant ! Take over some control, whenever you feel really low things can overwhelm you and you may not have the energy to push things forward. My very best thoughts are with you , let us know how things progress 😀

  • Thank you, I will do 😀

  • Insist on getting copies of the tests done ....its your legal right

    Make an appt with the gp

    Post the results on here and we can help you get the help you clearly need

  • Thankyou so much, they have never shown me any actual results so I will definitely ask next time x

  • The only way you or us can work out whats happening is with the test results start a file

  • Learn as much as you can and get your partner interested too.

    The ThyroidUK website is excellent for starters


    When doctors say 'normal' they mean results are 'in range', but that is not the same as 'optimal' which is what you need. Get printouts of all your previous tests - you are entitled to have them. These will show your results and their ranges. Keep copies so you can see how treatment is progressing.

    Keep fighting. All the best.

  • Thank you so much that's really helpful x

  • Also, have u had vit d checked .. u can get internet test kits. Might link to some of your symptoms.

  • Thanks, yes they did check vitamin D. I didn't see any results, they said the only thing showing low was thyroid levels x

  • You need to get the results of ALL the blood tests you have had. Make sure you get the ranges as well.

    If you are in the UK it is your right under the Data Protection Act 1998 to have a copy.

    All doctors have a protocol they should have set up to follow to give you the results, so you may have to wait a few days after the request to get a copy.

    If the receptionist is difficult about giving you the results post here and people will tell you what to try in increase order to make your doctor comply with the law.

  • Thank you so much for your help xx

  • Ask to get your thyroid antibodies checked

    There are two sorts TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) Both need checking, if either, or both are high this means autoimmune thyroid - called Hashimoto's, the most common cause of being hypo. NHS rarely checks TPO and almost never checks TG.

    Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

    When you get results suggest you make a new post on here and members can offer advice on any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately


    Blue Horizon - Thyroid plus eleven tests these, plus folate ferritin, b12 and vitamin D. These four all need to be at good levels for thyroid hormones to work. Just being within the range may not be good enough. In which case supplementing can really help, but you need the actual test results first to know where you are at.

  • Thank you much, that's really helpful ☺x

  • I would go for the Private Testing with Blue Horizon as suggested by SlowDragon. It will be worth every penny and saves all the battling with the GP's who know so little about the Thyroid and its workings. The kit is sent to your home and the results back with you after a couple of days. Takes all the stress out of things.

    When Hypo so many other things are also low - like the vitamins and minerals mentioned above. Somehow Docs rarely join up the dots and make the connection.


    The above link is about obtaining your results from the GP surgery.

    Hope all goes well for you and I will look out for your next post.

  • Thank you so much. It looks like private may be the way to go xx

  • Hello.....I feel your pain!

    Reading your post was like listening to myself. I have plantar fasciitis, chronic knee pain and muscle fatigue too and I know how frustrating docs can be!! My 3 month apt is up next week and they said originally that my TSH was slightly high and there expecting it to be higher this time. I too was sleeping on the sofa 3-4 x a week for a granny nap and needing at at least 8 hours sleep as an early riser 6 am. Single mum with 3 kids gotta work to pay the bills lol. My job is physical and I take pain meds just to walk and bend my knees. Next week I hope this will change but the anxiety is there, what if it hasn't changed? I have since the beginning of the year started taking antidepressants as according to the docs originally I am depressed. I will be honest the better days now outnumber the 'low' days and although I still feel lethargic I only have a granny nap once a week. These little happy pills give me the boost not to give up. All the physical elements are still there though. As for weight gain, crap isn't it?? I love a doughnut, so unfair!! You can try the LCHF diet but it bloody hard 50-75g a day of carbs is what they recommend and lots of natural fats and proteins. I never lost weight apart from water but it did maintain it-however through advise from here (and people are amazingly understanding) I have stopped sugar and soy oil and the weight gain has dramatically reduced.

    Anyway I have waffled way too long, keep up the fight with the doctors I certainly am and I will follow you and your journey. You are not alone...as I have discovered....there is lots of support here and so much understanding.

    Be strong xx

  • Thanks so much for your reply,as you say it's great to know you aren't alone. It's nice to have an outlet to voice everything.

    I hope you are sorted soon, a healthy person would be exhausted with your lifestyle so can imagine, suffering like this how you must be feeling 😯

    Good luck with your 3 month app, hope you get the help you need xxxxx

  • Many of our members have their own 'stories' unfortunately.

    Pay no attention as you have found out that many doctors haven't a clue how we struggle to get diagnosed and palm you off with 'this - that - or another'.

    Your symptoms point to hypothyroidism and pain etc.

    When having a blood test it should be the very earliest possible and don't eat before it although you can drink water. This helps the TSH to be at its highest as sometimes they adjust hormones to 'fit' into the range - shouldn't be done as it rebounds on the patients.

    When you are given hormones, you should have the last dose approx 24 hours before the test and take it afterwards.

    The procedure for taking thyroid hormones is first thing on an empty stomach with full glass of water and wait about an hour before eating. Food interferes with the uptake. Or, you can take them at bedtime as long as your stomach is empty (maybe about 3 hours after a big meal).

    It is a big learning curve if we've to recover our health but you are struggling now. The biggest problem is that the British Thyroid Association have instructed doctors not to prescribe until our TSH reaches 10, (barbaric) and other countries prescribe if it is over 3.

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

    (I remained undiagnosed - paid gastrenterologist and other Specialists and got a different diagnosis from each one. Even went under anaesthetic to remove a 'Post Cricoid Web (whatever that is) and was told I could choke to death if it was not removed - when I came round I was told I didn't have any so I said 'well what was it on the Barium Swallow - no answer was forthcoming but they got their fee. I was also discharged by the A&E cardiac dept 1 week before I was finally diagnosed by my own insistence on a test, suggested by a First Aider.

    I shall give you a few links from our website, Thyroiduk.org.uk and we also have recommended labs who give a small discount if the code is used.

    If you have thyroid antibodies you'd have the commonest form which is Autoimmune Thyroid Disease called Hashimoto's. If no antibodies you could have hypothyroidism.



    There are other topics down the left-hand side.

    The doctors are following their instructions and we, the patients, are outraged at the inability to get proper diagnosis and adequate doses of hormones and they should all be re-trained in clinical symptoms and blood tests as a 'tool' not a diagnosis per se.

  • Thanks so much for your help. I'm trying to get an app today and will go armed with all this info xx

  • Most doctors dislike us bringing in 'papers' or any info - (reflects on their training?). If you look on the BTA site and guidelines you will see what they recommend.

    I have just looked and I cannot see info as they have changed their website, it would appear. I have copied this and 'symptoms' came as a huge surprise :-

    How are thyroid disorders diagnosed?

    Your doctor will be able to get a good idea about the activity of your thyroid gland by listening to your symptoms, asking you some questions and by examining your neck. However, by taking a small sample of your blood he or she can assess exactly your thyroid secretory state. On this single sample of blood, for example, the levels of the hormones involved can be measured in the laboratory. By this means it is possible to find out if too much or too little T4 and/or T3 is being secreted, and how active the pituitary is by measuring the TSH. A single blood test will normally confirm the diagnosis, but sometimes other tests are required.

    Can thyroid disorders be treated?

    Yes – your thyroid disorder and many of the symptoms, too, can be treated. Most thyroid disorders are treated with daily medication. There are other treatments for those thyroid disorders that cannot be controlled with medication. You can read more details under the specific thyroid disorders."

    I then clicked on another item and was taken to the American Thyroid Association website and under hypo:-

    The correct diagnosis of hypothyroidism depends on the following:

    Symptoms. Hypothyroidism doesn’t have any characteristic symptoms. There are no symptoms that people with hypothyroidism always have and many symptoms of hypothyroidism can occur in people with other diseases. One way to help figure out whether your symptoms are due to hypothyroidism is to think about whether you’ve always had the symptom (hypothyroidism is less likely) or whether the symptom is a change from the way you used to feel (hypothyroidism is more likely).

    TSH (thyroid-stimulating hormone) test. This is the most important and sensitive test for hypothyroidism. It measures how much of the thyroid hormone thyroxine (T4) the thyroid gland is being asked to make. An abnormally high TSH means hypothyroidism: the thyroid gland is being asked to make more T4 because there isn’t enough T4 in the blood."

    So, two Thyroid Organisations, one states symptoms and the other don't really appear to take notice as there are 'none'? Also we know in the UK they do not take account of clinical symptoms of which there are about 300+.

    No wonder we, the patients, are in a pickle.

    Oh, to go back to before the blood tests and levo were introduced, then all doctors knew symptoms, took signs etc into consideration, i.e. fatigue, unexplained weight gain, cold etc etc and we were given a trial of Natural Dessicated Thyroid Hormones. There's no danger.

  • Thank you so much. I have a telephone app for today so I'll update later xx

  • Reading this post and your symptoms sound identical to mine. I went to the Dr and focuses on telling him about the cramps and muscle fatigue. Got. Tests. The fr phoned me at home the next day asking me to come in the next day for further blood tests and prescribed me levothyrixine. My levels were through the floor.

    Following second set of bloods I was referred to endocrinologist (still waiting but it has only been 4 weeks).

    I would go back and try and see one of the other Drs. We are so typically Nritish and don't always make a fuss where we should. I put off going to Drs until I was really ill putting up with symptoms.

    Good luck.

  • You're so right about being too British. At my last app the first thing the doc asked was 'how are you?' I replied in my typically polite fashion of 'oh I'm fine thank you'! I was anything but fine, that's why I was there!! 😂

    I hope you get to see the endocrinologist soon amd get sprted xx

  • I have just got results from Dr. My 1st test came back as TSH 5.2 and T4 9.6.

    2nd result was TSH 5.7 and T4 10.9.

    He said this is why I need the test done again in 3 months to establish a pattern. I asked if I was just supposed to suffer until then and he said I needed to book an appointment to discuss the symptoms...um this is what I have done, twice! I didn't initialy go in saying I thought I had a problem with my thyroid, they decided to test because if the symptoms I was presenting! I feel like I'm going round in circles 😫

  • How far apart were these tests done?

    It seems even more than usually sadistic to make you wait yet another 3 months. But I suspect if you book an appointment to discuss the symptoms before the three months is up they won't decide to treat you, they will give you anti-depressants and a diagnosis of fibromyalgia or Chronic Fatigue Syndrome. That has to be avoided at all costs! Once you have fibro or CFS on your medical notes they stop treating you for practically everything and blame any health issues on the dustbin diagnosis they've given you. They might treat you if your leg was hanging off - but only if you were wearing a skirt and they could see it was hanging off. Wearing trousers might hide it, so there are no guarantees in that case.

    What the doctors think : The reason for making you wait is that they don't want to treat a transient thyroiditis. If that is what you have then they justify the non-treatment by saying it may go away without treatment.

  • The tests were just over 3 weeks apart. I heard that even once you start on meds it can take 3 months to relieve any symptoms, therefore it's looking like at least six months before I start to feel any better 😣. Even if they offered me some help/support in the interim I'd feel more positive but it feels like they are hoping by saying it will be 3 months i will just go away xx

  • I completely understand you. God it's like reading about myself. I have just been diagnosed and have started taking thyroxin. I also have an added complication I have a lump in my neck. I have had an ultrasound and am waiting to see the specialist. Go back to your gp good luck

  • Usual advice for thyroid test, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) if on Levo don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, so best idea is to keep TSH result as high as possible.

    If you can not get GP to do these tests, then like many of us, you can get them done privately


    Blue Horizon - Thyroid plus eleven tests all these.

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later

  • Thank you so much for your help xx

  • All you have said is exactly how I feel now, i have just been off work for 10 weeks first time ever off, after many years of pushing myself to the absalute limit, no life really, until my body and mind has said no more,was diagnosed many many years ago maybe 15 or more don't remember, I have to go back to work in one day, not fit enough, i only get ssp and on my own can't afford to stay off any longer, have tried different Meds, I obviously haven't got it right yet by a long way. Still learning, I knew no better for most of them years.

    So please don't wait, gain all the knowledge you can with everyones help and advice on here, I know it's hard when you feel like you do, but will be well worth doing, so you have a decent quality of life.

    Best wishes xg

  • So sorry to hear you've had such a hard time xx thank you for your kind comments and advice xx Hope you make some progress soon xx

  • When I came off thyroxine an alternative medicine, health shop put me on sea kelp, my tsh was still high but my energy levels improved greatly. I also feel pain from my head to my toes, serrapeptase helped me a lot.

  • Thank you, I will look into this xx

  • You are being stiffed! The reason you are being stiffed, is that your doctor has never had hypothyroid himself so he has ZERO idea of how it makes life impossible. Make another appt now, and if he won't listen, get ready to do self-treatment. Many here can help you. If you want people here to help you, it is best to get the full panel TSH,FT3,FT4,rT3,TPOAbTGAb which you can get from a private testing company if your doctor is only doing TSH.

  • Thank you. You are right, if they were in this pain hey wouldn't like someone telling them they had to wait another 3 months xx

  • What is wrong with these docs?why haven't they given you the thyroid meds you need? As far as your body aches/muscle cramping or fatigue you should make sure you're using iodized salt that will help

  • Thank you, I will have a look. At that. Good news today though, I went as a walk in before work this morning and saw the original documents that sent me for first tests. He has prescribed a small dose (25mg) of levothyroxine so hopefully with this and the supplements people here have recommended I am on the road to feeling like me old self again ☺ xx

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