GP dismissive of blue horizon results. Advice please?

Hi,

I got my results from BH on Wednesday and sent a copy to my gp and asked for a phone call today.

He was really unhelpful and wasn't interested in the results. Then said even if he was to look at them my TSH isn't actually high and the thyroxine in my body is fine so they're clinically insignificant but can repeat in 6 months.

TSH: 5.03 (0.27-4.2)

Free T4 14.52 (12-22)

Free T3 5.43 (3.1-6.8)

He then asked that I wasn't taking thyroxine or "anything stupid like that?"

I told him I've been feeling crap for the last 1-2 years with symptoms: fatigue, weight gain, dry skin, feeling of lump in my throat and irregular periods now approx. every 6-8 weeks.

He then said to repeat now. I asked if it would be the same tests he was repeating as i'd prefer to go private again (phobia of needles) he said no there were others but he wouldn't tell me what and asked why I wanted to go private. I explained and he said if I wanted him to deal with it just go for the blood test and he was only going to stick a needle in my arm (him laughing - me starting to cry)

What other tests would he be doing? Are there other conditions that can cause the same symptoms and slightly raised TSH that I should be concerned about?

I can't go through with the NHS blood test I was crying and could hardly breathe when I got off the phone just at the thought of it. Do you think I should try a different NHS GP or will I get the same response there? (even a bit more compassionate of my phobia would be a plus.) Are there any private GP's who would be more willing to consider the results?

Also, when do you think I should repeat the test? BH dr said in 3 months unless symptoms develop then retest sooner but I've already got symptoms. My gp said 6 months then 3 when I told him what BH dr said then down to next week when I told him my symptoms (particularly the infrequent periods - before this he asked if my symptoms were because I was anxious about anything)

My dad has underactive thyroid and so did his auntie and my great nan on my mums side. I was thinking of changing to my dads GP as they'd know family history better? Or is this irrelevant? I don't mind going private if I'm not made to feel as stupid or belittled as I was earlier :(

Thank you

114 Replies

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  • Some of these doctors are so smart - making fun of a patient whose care from him is so bad that she has to search the internet and thankfully finds support from many members who've had similar treatment.

    Due to the ridiculous training in dysfunctions of the thyroid gland they are ignorant at the very least. You have no option but to have a trial yourself and doctors who trained before the introduction of blood test paid no attention to the TSH but only considered the patient's symptoms. The following link is from TUK our main website and you aren't the first to be treated so shabbily.

    thyroiduk.org.uk/tuk/testin...

    You will see from the above chart that you are hypothyroid and I'll also give you symptoms check. Tick them off and tell your GP you will have no option but to take other advice. Say you've had a word with a Support Group on Healthunlocked who are the NHS Choices for advice on a dysfunction of the thyroid gland.

    thyroiduk.org.uk/tuk/about_...

    Just as he has dismissed you, you can dismiss him as he is not helping you at all.

    Your TSH is above range but, as I said, the biggest problem is the BTA's guidelines. In other countries if TSH was above 3 we'd be prescribed.

    Tick off your symptoms and send him the Interpretation of Tests and say you'll have to take things into your own hands. Also that hypothyroidism runs in the family.

  • Thanks for your reply shaws.

    When you say my only option is to have a trial myself. Do you mean try different GP's?

    I have about half of the symptoms on that list (some others I wouldn't know as haven't had tested)

    The chart says to confirm diagnosis check FT4 TT4 TPOAb & TgAb. My FT4 was within range so do you think I should get the others checked too? If so, how soon?

    Having read that I feel like going to America! I've been so worked up all night over what else it could be if he doesn't believe it is my thyroid and wouldn't tell me what else he was checking for :(

    Thanks again

  • Awe bless you. I get your needle phobia cos I'm the same. There's some right arrogant monstrous GPS who get pleasure from seeing us squirm. The old saying goes what goes around comes around. Maybe they will get symptoms of hypo thyroid too one day! Let the battle commerce.

  • We can only hope! There's a reason he gets his bad reputation and nickname around here... Nice to hear from someone who understands. It's not just something that goes away with taking a friend or looking away etc. And definitely not with someone telling me their only going to stick a needle in me! :(

  • I know. I had it done yesterday. I have to have it taken for 2 medical conditions at different times. More due next month 😭 you Can insist that they freeze your arm. They don't tell you that . And it really works . I have to have steroid injections and insist they use gallons on the freezing spray beforehand x

  • Ahh I couldn't cope. That would be the worst thing for me. I've used the numbing cream etc etc but it's not the pain or the feel it's the whole thing and thought of it :( I can just about handle normal injections and finger prickers but can't stand the thought of it going into my vein :( it (literally) goes through me where I can't keep still if it even crosses my mind xx

  • Yes I totally understand that one. Maybe find a holistic doctor who would be happy measuring your BP, Temperature, and using your symptoms. I don't know of one myself but someone on here may know. I really feel for you because no matter how terrified you are no Doctor will understand how bad this is for you. when I get my test done I ask that the band around my arm is tightened really tight then I talk for England! I talk, alot of anything for about 3 minuets that's my coping strategies. It also helps if you find someone gentle xxxxxx someone using child's size. I do understand that I can tell you all this and it won't make a jot of difference. At the end of the day you have a Phobia that terrifies you. X

  • Thank you. A holistic dr is a good idea. There's a gp surgery not far from me who have been rated outstanding by the cqc who mention in their report that they're part of a holistic approach scheme. (That's how desperate I am to be reading gp's cqc reports!) Maybe I'll try there first.

    Yea I'm really sorry and I really appreciate you trying to help but even the band they tighten on your arm freaks me out. Even when lay in bed with my OH he knows not to even rest his hand over my veins because I can't stand it and can't relax :( xx

  • I know 😕 go and see the holistic one . Youll be treated with respect and as a human . Not a number x. Let me know how you get on . Take care and have a lovely Christmas🎅 ho ho ho 😇xx

  • I did have a look but unfortunately it seems like they don't believe in any medication. I need one who assesses holistically but treats medically haha I don't think they exist x

  • Commence! 😂 predictive text ! X

  • I meant that you should buy your own levothyroxine and give yourself a trial. Many members have done that and have got much better. Some also try a Natural Dessicated Thyroid Hormone.

    If you want to see another Endocrinologist you could email louise.warvill@thyroiduk.org.uk who has a list and one might be near you. You can put up a post asking if the person you think of seeing is a good choice.

    Please note that I'm not medically qualified. I had undiagnosed hypothyroidism and untreated until diagnosed by a First Aider :)

  • Thanks I'll try email her tomorrow to see who there is in my area.

    Where would I buy it from?

    I'll try the antibodies route first and hope that picks up something gp's can't ignore. Then if not I guess I wouldn't have much choice but to try x

  • You must put up a new post asking for a Private Message to be sent to you of where to source levothyroxine or Natural Dessicated Thyroid Hormones.

    Just for information some of our older doctors who were trained before the 60's on symptoms alone and NDT were dismissed as their licences were withdrawn or they rendered them in. This is an excerpt of one doctor who went out of his way to fight the BTA etc but he died of a stroke, no doubt brought about by appearing before the GMC about 7 times. His 2,700 patients wrote or turned up at the hearings. Excerpt:

    This book was written to draw attention of the medical profession to a major faux pas in the care of patients with hypothyroidism. This arises from the inexplicable refusal of the medical profession to recognise that patients can suffer from hypothyroidism when the thyroid chemistry is deemed to be ‘normal’ if the free thyroxine or the thyroid stimulating hormone lie between 95% reference intervals. There is a further problem that when a patient is diagnosed as hypothyroid many patients receive too low level of thyroid replacement through servile reliance on thyroid chemistry with (often) cavalier disregard of how the patient feels accompanied by an implicit and bizarre belief that a level of thyroid hormone is a better index of wellbeing than the patient’s own view of his/her wellbeing.

    worldthyroidregister.com/Go...

  • If I don't get anywhere with nhs I will do thank you.

    Wow, what a shame and now we have to fight for ourselves.

    Lovely that all his patients turned up to support him. Maybe we all need to appear infront of the GMC. X

  • At the Hearing the GMC had Red Ledgers with all the 2,500+ testimonials sent by his grateful patients. Many also attended the Hearings

    The strain for Dr S even with excellent lawyers would have been awful, although you might think you are bearing up well.

    He was doing as taught as a student and couldn't take the 'nonsense' that abounds nowadays in the Endocrinology. Particularly with patients not being diagnosed or too low levo.

  • I did say about going elsewhere he wasn't interested. That's when he laughed at me and said if I wanted him to deal with it then go in and repeat the blood test he was only going to stick a needle in me. Aside from the phobia I had my second hep b vaccine yesterday (I'm an NHS physiotherapist) so I don't know if I'd have to wait a while to repeat the blood test anyway.

  • I'm the opposite of you melissaemily, I can give blood and let them take as many blood samples as they want yet the thought of an injection horrifies me. There's no accounting for phobias is there.

    I use the BH Thyroid 11 £99 test. I'm in remission from Graves Disease (overactive with antibodies) and I went totally gluten free a year ago after being diagnosed with inflammatory arthritis. I've got lots of autoimmune conditions and that was one autoimmune condition too many. So I've been checking my (previously sky high) thyroid antibodies ever since and both have come right down.

    Could be a fluke but I'm sticking with gluten free. It's easy to do and I know a lot of underactive people have good results when they go gluten free so it could be worth trying that.

    Your doctor sounds like a bit of a bully to me. It's not funny to say something like that to someone who is obviously scared, then to laugh at his own joke! Horrid person. Unless going elsewhere was really inconvenient, I wouldn't want to go back to him.

    On the other hand if you can give as good as you get back to him you might be able to come to an understanding. One of my sons had a teacher who was a bit like that and when I gave back as good as I got he realised that he couldn't intimidate me and wad ok, had a GP who was full of the same sort of bluster and again when I gave back as good as I got he changed. Funnily enough I got to like both of them.

    Standing up to bullies likethat is hard when you're terrified though. Good luck.

  • No there isn't unfortunately. Thank you for understanding and not making me feel stupid/crazy :)

    Thank you for the advice, I will try it in the new year (I've already done the Christmas shop and I've heard GF is quite expensive?)

    Yea I think I can stand up for myself in certain circumstances when I really know what I'm talking about. But when I'm this worried about my health and don't 100% understand the thyroid levels and how they work then my immediate reaction was to just start crying (& worrying more since he wouldn't tell me what else he was testing for.)

    To be honest I'd drive the M6 5 times if it meant seeing someone who understood and actually considered that tests and treatments are changing and looked at the evidence rather than ignoring because he didn't like it.

    Am I right that him saying a TSH of 5.03 at 1pm isn't high (or his exact words "Ha! Hardly!") Shows he doesn't have a good understanding of thyroid anyway?

    I would never normally see him but the nicer ones I used to see have all either left the practice or gone on maternity leave. There's only him and another lady who is just as bad if not more rude. So I'd rather leave. I'm just not sure where to go because I'd feel even worse if I changed and got the same again xx

  • You know guy has a nerve to refuse to tell you what he is testing you for! Who does he think he is? Santa Claus bringing you a surprise, that's not on.

    GF isn't that expensive. GF biscuits and substitutes for cakes, bread etc are expensive but junk food is junk food be it GF or not and it's probably not stuff you want to be eating much of anyway.

    You'll need to read all labels carefully, wheat etc can pop up in some very surprising places.

    I don't eat grain based products - they really spike my blood sugar. I eat fish, chicken, I start my day with Astro egg omelette and grapefruit, I tend to have soup and unsalted nuts for lunch then some sort of meat or fish and vegetables, I'm cautious about potatoes because jacket and mashed potatoes spike my blood sugar too.

    Eating out isn't a really a problem, most places can offer something, some places are really good. Nando's has a thick book with every ingredient in every dish and I've had the chef over several times to check our order because we've mixed GF and Non GF on the same order. They are excellent.

    I hope you can get sorted out soon, it's just so unfair that your doctor seems to be such an idiot. Any chance if the nice one coming back when her maternity leave I over?

    Actually just had a thought - is there anyone you could take with you for support next time you go to this guy? Might help if he realises that he is the only person who thinks 'sticking a needle in you' is funny.

  • Thanks for this. Yes I wouldn't miss biscuits or cakes but bread would be a thing for me. I tend to take a sandwich for my lunch at work as I'm out all day in the community. But maybe if I had more energy I'd be able to make more interesting things.

    I don't know when she went on maternity so not sure when she'd be back. I only saw her a couple of times for recurrent tonsillitis. I wouldn't want to wait for her then have the same issue.

    I'm not sure to be honest, all my friends and family I've spoken to in my area avoid seeing him to.

    I think I'm just going to switch to my dads go and see what happens.

    Thanks for your advice x

  • Quite a few of our members who have had enough of suffering have gone it alone with support and don't regret what they've done.

  • With support from this site or private/holistic route?

    I'm going to repeat my blood test earlier in the day and with antibodies vit d etc then see where I go fr there and if I can get a to listen.

    Then of my levels are the same and I'm still feeling rubbish then I'll go it alone.

    How likely is it that my next results will be fine? Can it sort itself out or is that unlikely? X

  • I think with support of the members you'd do fine. The majority have been through the mill and have gone it alone and are better for it. Also we aren't offered alternatives if levothyroxine doesn't work but it does for thousands of people.

    I remained undiagnosed for about 7 years and finally it was a first aider who suggested thyroid and that was one week after being discharged from the Cardiac Dept of the A&E with 'probably viral with high cholesterol'. Not one doctor/specialist despite my many visits did a blood test for thyroid gland and neither did the Cardiac Dept. My TSH was 100.

  • Wow you must have been feeling horrendous!

    My dad has responded well to levo and vit d supplements so hopefully I'd be the same if I can get someone to listen or go it alone.

    I can't believe my dr asked that o wasn't doing anything stupid like taking Levo. Clearly if I had been and my tsh was still 5 I'd need it! X

  • It's a pity to say so, but they have been brainwashed that it's easy to treat i.e. just take the TSH and wait till it reaches 10. Five points above the top of the range. What idiot thought that up.

    Let's get back to treating patients and taking symptoms into account first and prescribe if TSH is above 3 (in quite a few countries the cut-off).

    Rather than give patients a decent dose of hormones they are willing to hand out other prescriptions for anti-d's (no blood test for this but go by symptoms): pain relief for disturbing joint/muscle pain symptoms: sleeping pills - insomnia: betablockers etc. etc..

  • More money that way. Having worked in pharmacy and seen that it's medication to treat side effects of other medication x

  • That's the point it would seem, raking in money by not getting what our body really needs a decent dose of hormones.

  • True,

    Do you think this could be why I stopped tolerating the contraceptive pill and getting a lot of side effects?

    Or does it not effect them kind of hormones?

    I was on it for the first 4 years without problems. Then it got so bad I had to stop taking it or any form of hormonal contraception so that's obviously a worry too. X

  • As I'm not medically qualified I am not sure but many women must be using contraceptive pill.

    I have just looked at a past post and it does appear that birth control pill can affect thyroid hormone uptake. This will be helpful to you as its important to have optimum thyroid hormones to alleviate your symptoms and make you feel well.

    healthunlocked.com/thyroidu...

  • It was helpful thank you. I feel like I may have had symptoms for longer than I realise. I felt some improvement when stopping the pill which is why I haven't gone back on it. I'd like to get to a stage where I feel well enough to go back on it without feeling worse :)

  • I'd have another blood test in a few months. Most of us don't feel an improvement when first on thyroid hormones but that's most probably because hormones been gradually diminishing for much longer than we think.

    Also because an initital dose, being low, can give us more symptoms until dose is raised gradually and we have to be careful as our heart and brain in particular needs thyroid hormones as well as the billions of cells in our body. :)

  • I need to find someone willing to give me an initial dose first ;) x

  • The Estrogen in CP HRT & Fertility drugs would give you a higher Reading than the 5 so I guess symptoms of symptoms of Hypo worse. I got a lot of my knowledge from fertility Freind's UK.

    I was 50 when I visit my GP to inform him I was going to do IVF with donor eggs & asked for HRT untill it was organised, I don't know why but he ordered hormone test & my TSH was 7.8, I asked if it was ok to get pregnant with those levels he said yes also as my T4 was in range I was not Hypo! Now in the night I got up as my gut was telling me some thing was not right , I got on PC and found my GP was ignorant on thyroid issues. I found an American site about .Com & the reason I had 5 Miscarriages why I found it difficult to conceive after having 4 kids I managed in 1 and the ones I managed to carry for 9 mths had problem the third one is worse with Dyspraxia, the other 2 Dyslexia. So of I trots back to GP after contacting FT clinic in CZ Rep who informed me it was infact to high & detrimental to pregnancy.

    My story is like yours my GP refused me treatment on the T4 reading until I put my foot down & thank heavens I did. I was 6 wks on Tabs with 50mg x 4 wks & 75 x 2 when I got the call to start Hormones for IVF & 6 wks later I got a POS HPT so off I go to GP to ask for test for HRT as advised by FT clinic of which I was refused I had. THS BT due it was 5.?.

    In 2000/I attended a recurrunt Miscarriage clinic who told me to self refer when I got pregnant again so in 2007 I gave them a ring & informed me I would need refered back to them for length of time it had been, I told them my GP would not give me a HCG at same time as my Thyroid blood test so hardly going to refer me to RMC. This rang a bell with the Midwife, so of she went to get my results & informed me she would need to speak to a Consultant in Fetal Medicine as my THS was to high, I then got a call back to say the Consultant would ring my GP to put up meds immediately, I also got a slot at RCMC. It turns out your THS should not really be much above 2.0 when pregnant & around the 1.0 mark when trying to conceive allowing for the rise with pregnancy hormones & especially if taking Estrogens for fertility treatment.

    Now I have told you my long story & if you are still reading I will advise you to change GP if yours won't listen & treat you. Get your self on Dr Google & get cluded up so you have the info to back your fight. As issues run in family you will more than likely have Hashimotoes so will need your Anti-thyroid antibodies tested. A person with high antibodies & a normal THS of 3.0 & under should get meds & defernatly if trying to conceive, Fertility Dr's in the know will treat Hashimotoes with steroids for 12 wks of pregnancy & maybe blood thinners. I don't have Hashis but still had steroids.

    The new level of THS from 0.3 to 3.0 have been know a bout in USA since the 1990s but this info never got to UK & when it did the NHS only lowered the 0.5 to 0.3 in my health ahorthority, some other took the higher end down to 4.5 , but all took down the 0.5 to 0.3 I believe??. I'm guessing our NHS could not afford to treat every one with a level over 3.0 as treatment is free & not just for your thyroid but all prescriptions so I guess this is the reluctance to treat us.

    I had a little girl full term then Twins @ 26+ wks all 3 are normal bright with no bad memory, organisation skill's or coordination problems.

    Hope you get sorted soon

    Good luck.

  • Thank you for putting up your history and it would be good if you could copy and paste it into a new Post and also onto your Profile.

    We would assume ALL doctors knew the dangers of an underactive thyroid especially when a patient has recurrent miscarriages or has difficulty conceiving.

    In the UK the barbaric guidelines state we have not to be given hormone rreplacement until TSH is 10. Some doctors also think if the person reaches the top of the range (around) that they don't need more hormones.

    I really don't know what planet they are on and I know many countries prescribe if TSH is over 3.

  • Thank you Inashoe. This was really helpful and I second shaws input of making a separate post as I'm sure others will find this useful too.

    It really helps to solve the puzzle of symptoms that I've had that may be linked but ignored them as nothing and compensated for them i.e. I came off the combined pill and felt a bit better so carried on without it.

    You made me laugh with the "if your still reading" :) I really appreciate all the advice you have given. Even some I wasn't looking for but needed as we would like to TTC in the next year or two. So it's obviously very important that I get this sorted before then and find a GP willing to help me.

    If only we could catch up with the US. I'd be being treated and able to test from one dried blood spot so my needle phobia wouldn't matter either!

    Thanks again for all your advice and glad you were able to extend your family :) hope you all have a lovely Christmas and new year x

  • Hi Melissaemily

    Sorry to hear you have been given such shabby treatment from a very uncaring doctor. I would change surgery as that is just unacceptable. It's hard enough dealing with all these symptoms and quite scary without all that horrible attitude on top. Your family GP sounds better. I have also been dismissed constantly and refused treatment. People on this forum are very helpful and knowledgable and have great research which they can send you. Take good care of yourself Jane xxx hugs xx

  • Thank you Jane. I hope you get sorted too.

    Yes I'm really glad I posted now as I think I'd still be crying and having a panic attack over the blood test and going back to see him! Xx

  • Aww poor you ...don't bother with him or go back to him. Is there a surgery better that someone cd recommend? Must say I've changed surgery and stFf and doctors a bit better but THYROID issues seem to be a closed subject unless your TSH is over 6/10. This forum has been a life saver for me. You probably feel scared as so many symptoms at the same time but you will get there.. do t worry and keep posting. Merry Christmas xxx

  • There are a few in my area but having worked in the local pharmacy during my degree I don't have much faith in any of them!

    I'm considering going to my dads go as they noticed and treated his underactive thyroid before my dad knew he had a problem. They also tested and supplement his vit d without him asking or having a clue it needed testing.

    There's also a new one slightly out of area who have had an outstanding cqc report which included patient choice compassion and holistic approaches. But as you say whether that includes thyroid treatment is a whole different ball game.

    Also I've learnt from here that I took the test when my levels would have been at their lowest at 1pm. I did it as soon as it was posted and returned within 2 hours as I was just desperate to know if it was all in my head and I was just getting fat!

    I've never been big/fat, I'm 5ft1 and don't really eat a lot (especially not compared to OH or brothers who are fine) though I do like a bit of chocolate after tea. I don't drink alcohol, fizzy drinks etc just water or squash and I'm a physio so don't have a sedentary lifestyle or desk job either.

    I feel like a fraud at work giving lifestyle advice when I look like I need it myself! X

  • You really need to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

    Also get 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 in UK of being hypo.

    (NHS rarely checks TPO and almost never checks TG. NHS believes it is impossible to have negative TPO and raised TG. It's rare, but not impossible, there are a few members on here that have this.)

    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 you can get them done privately, as your last test

    thyroiduk.org.uk/tuk/testin...

    Blue Horizon - Thyroid plus eleven tests all these. £99

    Usual advice on ALL thyroid tests, (home one or on NHS) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then 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, best idea is to keep result as high as possible

    If you have Hashimoto's then you may find adopting 100% gluten free diet can help reduce symptoms, and lower antibodies too.

  • That's great thank you. How soon do you think I should get this checked? My last one was on Tuesday - it was fasted but at around 1pm.

    My gp said there's no point repeating now as I'd get the same result. But then after I told him symptoms he said to do one next week.

    I don't know what my gp would be testing for as he wouldn't tell me so I'd rather get them done myself.

    Do you know if I need to leave it a while after my hep b vaccine?

    Thanks again for your reply.

  • In my view this is unethical:

    I don't know what my gp would be testing for as he wouldn't tell me so I'd rather get them done myself.

    You should be giving informed consent to having the blood taken. Not being told (at least when you ask) is far from informed consent.

  • Thanks helvella.

    I asked if he'd just be repeating the thyroid tests and he said "no there's other things"

    So I asked what else and he wanted to know why so I said I'd rather go private and he asked why.

    I explained my fear and he asked how private would be any different so I told him I could either have a phlebotomist or someone to do a home visit or from my finger (eventho I know the first 2 wouldn't make a difference I knew how he'd react to the finger test)

    Then he completely shut me down and said well you can't have these done from your finger so look if you want me to deal with this then come and get the blood test only going to stick needle in you etc.

    That's when I started crying and said OK bye as I couldn't speak x

  • I'd have said "I'd rather go private because I'd get treated like an intelligent adult, not a retarded, naughty child, and I would know and have control over what tests were done"

  • Personally, I'd change my Dr & put in a complaint about my current one while I was at it.

  • If your TSH is 5 when blood test done at 1pm, it will probably be even higher if you get it done early morning (before 9am if possible) and don't eat first. Just water.

    I doubt GP will do both TPO and TG antibodies, but you can ask. Essential to get B12, folate, ferritin and vit D checked too.

    If he won't do all, then you can get done privately anyway

  • Thank you. He wouldn't even tell me what he was testing for, he just said "other things" (which has obviously scared me as to what else could be wrong) then wanted to know why I was asking but still wouldn't tell me. So I very much doubt what is tested is up for negotiation.

    If his response to bh results of tsh 5.03 at 1pm is high was "Ha! Hardly!" Does that mean he doesn't have a good understanding of thyroid anyway and it's not worth the fight? Or is he right and it's likely to be something else causing my symptoms?

    My dad is underative and has to take vit d supplement too so I'll definitely get them checked I just don't know how long to leave it since my last one or my hep b vaccine.

    Thanks again x

  • He is a know-it-all, know-nothing tw-t who needs to get over himself. Just imagine him in the street in saggy Y front and wellies and nothing else. It'll make you feel better

  • Haha not a nice image at all! x

  • if my tsh was up at 5 I would be feeling really poorly! so no, its not all in your head. When you have calmed down and are thinking straight, ask again what tests he wants to run, and see if you think they would be benificial to you. I would be changing my doctor if that were an option, and it sounds like it would be for you, chin up chicken, these good people in here will set you on the right path :-)

  • That's good to know Whisper thank you. I feel alot less guilty about feeling so shattered all the time now :)

    I might call and speak to the receptionist next week to see what he's pit needs testing. When he was mumbling under his breath he also seemed to say let's check what they were before. He didn't say what they were but then we discussed symptoms and he said to go for the blood test.

    So I wonder if it's worth asking the receptionist if I've had it checked before.

    I last had a blood test when I was 15 (nearly 10 yrs ago) when I had glandular fever but I think this can alter thyroid levels anyway?

    Then before that I was checked for anaemia. Not sure if anything else was tested but i was told it all came back normal.

    I would have been about 13 then though so I don't know if normal children/teen levels would differ to adult

    Either way thought I won't be going back to that gp or surgery even.

    Thanks for your help x

  • I'm so sorry you have to deal with a GP who is being a moron, on top of having health symptoms and a needle phobia. That's a terrible way for a doctor to deal with a patient, especially since you took the trouble to do a blood test via another route. I did the exact same thing as you as I am also a needle-phobe, but fortunately for me my doctor has accepted the results and has allowed me to continue on using BH. Like you I was also just over the top end of the range and got put on 25 mcg. Your symptoms tell me you should definitely be having hormone replacement and if you can afford it, get tests for B12, folate, ferritin and D.

    Definitely change your GP. *hugs*

  • Thank you for your reply and support :)

    If you don't mind me asking what part of the world you are in?

    I'm looking in the Greater Manchester/Warrington area but don't mind travelling to a decent gp who will listen to me x

  • I'm in Great Malvern :)

  • Oh lovely I could combine it with a holiday with the dogs ;) x

  • Yes it's a wonderful scenic location!

  • That's the spirit Melissa, you sometimes have to travel a long way to get exactly what you want. My doc is a 400 mile round trip! - but I only have to do it once a year if that, because I worked very hard with him to start with to get on a precise dose (of NDT). Don't be shy to go after what you know you need. My neighbors think I am crazy to travel that far, but one of them has terrible hypo symptoms and goes to the doc in the village. She saves a lot of time but spends it asleep or watching TV - until she falls asleep. I spend one day a year max on the freeway, it's worth it.

  • Thanks LAHs.

    If I knew where to go I definitely would.

    I've spent a long time ignoring it and blaming myself for being lazy not eating better or exercising more etc but then when I tried I was exhausted and couldn't do anything without 12 hours sleep and a 2-3 hour nap in the middle of the day. It's nice to be able to hear I'm not the only one and that my results aren't clinically insignificant because I can stop feeling guilty and making excuses for only working part time, avoiding going out and everything else I've been do I got to mask the fact I have no energy x

  • You will probably be better off with a new doctor you are allowed to change practice without giving a reason and thyroid uk can provide you with a list of doctors in your area who have been known to be sympathetic to thyroid treatment. You can also try using the nice guidelines which say

    "If TSH is between 4 and 10 mU/L and FT4 is within the normal range

    ◾In people aged less than 65 years with symptoms suggestive of hypothyroidism, consider a trial of LT4 and assess response to treatment 3–4 months after TSH stabilises within the reference range — see the section on Prescribing information for further information on initiation and titration of LT4. If there is no improvement in symptoms, stop LT4. "

    if you can face another blue horizon test it is essential to get thyroid antibodies done as the standard view in the uk is that treatment should really only be given if tsh starts to approach 10 consistently if the ft4 is in "range" but they do consider treatment at a lower TSH if you have thyroid antibodies and a strong family history of thyroid problems.

    Good luck hopefully you can find someone who listens a bit better.

  • ps blue horizon also offer a thyroid plus which includes vitamin d and ferratin and folate and b12 which is good value.

  • Thank you I really appreciate this.

    I assumed this magical 10 would have come from the nice guidelines so I didn't even check! Thank you!

    Is there any reason to wait before repeating the bh test?

    Also, I struggled to fill the vial for the +3 test I had. They said to atleast the top of the printed label and I was about 1mm off. Do you know of its the same amount of blood required and same vial for either the +6 or +11? (One with a yellow cap) I think I'd have to split them into two tests if it needed more.

    Thanks

  • I getThyroid 11 -£99. You order and pay online, the kit arrived through the post next day. It comes with lancets and detailed instructions. I always do mine early in the weeks ops o that it doesn't lie in th post over the weekend. The results arrive in my email inbox a couple of days later. I like that test because among other things it does antibodies, B twelve, vitamin D and T three, sorry can't get the numbers to work at the moment!

  • No problem, thanks. I did the thyroid +3 sent it back the same day with delivery before 1pm the following day and got my results by 5pm it was really good.

    I just struggled to get enough blood for the 3 and was worried the 11 would need more x

  • I think (don't know for certain though, you'd need to ring them and check) that it's the same size miniature test tube within the larger one for posting.

  • Hi Melissaemily I really feel for you as I too had a horrible doctor due to having asthma probs - she mentioned my weight and I was not happy as I am with a slimming group and had lost two stone plus and she grinned and said oh I've touched a nerve there. Needless to say I won't be seeing her again she gave me steroids but she told me I had to go back 48hrs later to see another GP to see if I was ok with them - my previous GP who had retired also wanted me to have thyroid function test again.

    I saw a lovely GP who took my bloods herself - I was able to go online to see what results were - and as I didn't have the foggiest what they meant - I put them up on thyroid uk and found Coastwalker and Clutter to be very helpful they told me to ask for TPOab and TgAb along with vitamins blood tests - I've had TPO results put them up on here and got useful info back.

    since then GP called me Monday told me I was Hyperthroid plus she had written to endocrinologist when I saw her a few weeks ago and hadn't heard back from them so she was going to give them a nudge.

    she's since called me again on Wednesday has heard from endocrinologist who's said I have nodules on the thyroid may have to take Carbimazole - once results come back from scan they want me to have a nuclear scan - so GP requested it whilst on phone to me - I have just received appointment for 28th Dec at the nuclear medicine department for a thyroid scan. Yesterday I had my bloods done for vitamins.

    try and see another GP in your surgery and if they are helpful, listen to you - then the advice is to see this GP in future especially if it involves thyroid.

    Hope you get a positive outcome and wish you every success. Take Care 😘🤗🎄🎅🏻

  • Thanks Toolie.

    Glad you're getting sorted :)

    Unfortunately there's only two gp's there now as 2 are on maternity and the others I used to see have left (I wonder why)

    So I'm just trying to make a decision where to switch to and also find out how long I need to leave it before getting my antibodies and vits tested as my last test was Tuesday and I had my hep b vaccine on Thursday so wouldn't want this to interfere with results.

    Also which test to buy as I struggled to fill the vial for the thyroid +3 test x

  • Have you considered asking for some diazepam or similar prior to a blood test? Just a thought

  • No but I've been on it before for anxiety (ptsd) years ago and had to stop because it made my blood pressure too low (I've always had low bp anyway.) But I suppose now my bp has gone high with the weight gain etc it might be worth trying again.

    I was even hoping for a CBT referral for the phobia at the very least yesterday but he just laughed at me.

    Thanks x

  • You could just take it for a day or so around the blood tests.

  • I really hope you do find a GP with better people skills - I am lucky as needles don't bother me in the least but can imagine how you feel having phobias myself - I hate spiders - don't mind small ones but anything bigger than a money spider YUK !!😂

    Maybe some body here can give you advice regarding how long to leave it between blood tests - think they should've been all done together - if you've not given it from a vein that's probably why you've had problems filling the vial - again not sure if you're Hep B injection will interfere - as you are a physio perhaps you can contact one of your nursing colleagues or doc (not surgery) to find this info out.

    Noticed you put area you live I am in Cheshire.

    Take care keep in touch to let me know how you get on. Take care 😘🎄🎅🏻

  • Thank you Toolie.

    To be honest as I thought it was all in my head I just did the thyroid +3 expecting a definitive yes or no answer. I didn't expect to be sub clinical (or even know i could be) that's why I didn't do them all together. On top of that people who didn't understand my phobia telling me to stop being silly wasting money and go to the Dr so I went with the cheaper option. Really wish I hadn't now.

    But nevermind I'll know in future :)

    I did ask the nurse who administered the vaccine but she wasn't sure. She said its not a live vaccine so didn't think it could but gave me the patient information leaflet from the box (wish doesn't say anything about altering bloods) and told me to ask my gp. But as you can see by this post the conversation with my gp didn't get that far :)

    Thanks x

  • In my experience GPs are always scornful of private blood tests. Also you'll often be bringing things they don't understand, because the NHS rarely or never does them. So they then think it's not important. In this case freeT3, which even my endocrinologist doesn't understand.

    You're unlucky enough to be in the limbo of having a raised TSH, and obvious hypothyroid, but not being high enough to get a diagnosis. Some GPs make this arbitrary cut-off at 10, but others do it at 5. So if I were you I would do some GP shopping and try out a lot of them, to see if you can find someone who will treat you at 5.

    Doctors will tell you that 5 is only a little raised, but it's pretty high. People can easily be very ill at 3 or even lower. Healthy ppl have TSH close to 1, so anything much higher than that shows illness.

  • Thank you SilverAvocado,

    Do you think it's worth getting my antibodies checked first or just get started with finding an understanding/knowledgeable gp?

    I'm in work till Thursday then away from 28th-2nd so limited to what I can get done until after new year. Also might have to wait a while between blood tests due to having my hep b vaccine on Thursday.

    My hep b vaccine isn't live but the aim is for me to make my own antibodies. So I'm assuming getting any sort of antibody test anytime soon wouldn't be the best idea? X

  • Yes, I think it would be worth getting them tested. Others will be more familiar with guidelines than I am, but I believe that either Nice or another well respected body say that people who have antibodies and symptoms should be treated even if their thyroid panel looks fine. So you may have better luck persuading a GP to treat you. Although be prepared for them to scoff at the private results, likely the best response you can get is a retest.

    I don't know the full answer as to whether the Hep B vaccine will interfere with a thyroid anti body result, but it will be picking up different antibodies, these ones particularly target the thyroid. But I also think it's better to err on the side of safety, as your body chemistry may be effected in more complex ways.

    The Blue Horizon thyroid packs are very good. Most contain the 2 thyroid antibodies, but it's worth getting the largest one you can ( the largest doesn't allow the finger prick test), as the vitamins are also very important. Your GP will only care if you are desperately deficient, but you can supplement easily yourself. Hypothyroid causes vitamin deficiencies, and in turn vitamin deficiencies cause similar symptoms to hypothyroid AND make the medication less effective when you finally get it. You may be able to improve your vitamin status almost immediately and get a reduction in symptoms.

  • Thank you, I'll change gp next week then get the extra tests done when I can afford it and take the results to him. I wish I could pay for additional tests on to my last sample in retrospect. Kicking myself now! I was hoping for a clear cut yes or no answer to being hypo, not maybe/probably :(

    There's someone on here who is treated off private results 2 hours away from me, then someone else who said their gp now recommends bh testing to his other patients. So there is hope :)

    Thanks for your help

  • From your results, you are definitely hypo. No one would be healthy w those results (barring a few extreme outliers).

    The problem is the treatment guidelines, not you. Not even w your current results which are clear cut, you are definitely hypo.

    The only reason anti body results will help you, is that they hold sway w thick headed doctors. There's no such thing as a person who has these antibodies and doesn't have a deteriorating thyroid. So it is just another data point.

    Btw, the reason I'm saying you're definitely hypo is that the idealized healthy results are: TSH close to 1, freeT4 in the top quarter, and freeT3 in the top third. FreeT3 is the most important and most closely correlates w symptoms, but doctors will not know this as they are woefully under educated about thyroid.

  • As another aside, self medicating is an option for someone in your position, you will almost certainly feel better within weeks on some kind of thyroid replacement. But people can sometimes be left years waiting for their thyroid to deteriorate to some arbitrary number before the NHS gives out treatment.

    Unfortunately it's a hard road to tread, so best to follow up all NHS options first. Personally I self medicate, and so do a lot of the regulars here.

  • This is good to know too! I did wonder why my gp said "you're not taking thyroxine or anything stupid like that are you?"

    I didn't know you could without getting it prescribed x

  • It's hard to get, and that's one of the reasons it's much better to go through the NHS if you can :p At least then you know your supply is secure.

  • That's good to know thank you :)

    It's just such a relief to know it's not all in my head and know the reason for it. I've been finding it quite embarrassing how much I've changed and not knowing why. Even to the point of avoiding going out where I know there will be people I haven't see for a while because I've always been quite athletic and felt self conscious about them thinking I've just let myself go.

    Sorry for all the questions but how is my Ft3 still quite good if my Ft4 is the lower range and TSH high?

    Thank you.

  • SilverAvocado Sorry I'm not sure why this didn't go as a direct reply to your other message x

  • Shame and embarrassment is a big thing with this illness, I think. There is such a stigma to not being able to do things.

    That's a good question about the freeT3, and I don't know enough to answer it conclusively. Although the balance of the 3 numbers can fluctuate a bit. If you have Hashimotos, which is the most likely thing, you can get big peaks and troughs as when the thyroid gets damaged extra hormone is dumped into the blood.

  • (Oh maybe it did go as a direct reply) Thank you :)

  • NICE guidelines are "advisory". So GPs can refuse to follow them.

    Even if a specialist says you need treatment or tests at a particular time interval. A GP can refuse to follow that advice.

    However if you end up being blue lighted to A&E due to serious injury or or dead due to the GP refusing to follow a specialist's advice then the GP is liable. Though even then some GPs managed to wiggle out of it.

    In regards to Blue Horizon tests it really depends on the individual GP whether they will use them.

    At my current practice they are happy to but then again I live in an area where:

    1. medical staff in different practices have admitted that the NHS can't do all tests people need,

    2. they are aware that at least one of the labs that BH use are the same ones they use for the same tests.

  • Thanks Bluebug.

    So there is hope, I just need to find it in my area.

    As a health care professional I certainly wouldn't want to be defending myself for ignoring NICE guidelines. I'd have to have really strong clinical reasoning with valid evidence behind me to back it up and if that ever happened it would be very specific to the patient I was treating and I'd have to 100% believe I was acting in their best interest.

    No way would I choose to ignore or dismiss a patient who brought it to me in usual circumstances. At the very least I'd do a lot of research before making a decision.

    I'd be mortified if I ever made one of my patients feel how he made me feel x

  • It's amazing how cruel and badly behaved doctors will be about thyroid problems. It's one of those things where the current guidelines and best practices are very poor. So doctors don't really know what's going on, and I think often the attitude is that they haven't been prepared for these patients, so they will disbelieve, minimise and shame turn.

  • That's true. He did say on the phone he'd be clinically responsible for me.

    It's probably a lot of insecurity in themselves it's easier for them to dismiss it x

  • I dont know if anyone mentioned but u should write a complained it's clear that treated u badly and that's against your rights. It happened to me before and I did complain I got apology letter and a better doctor who gave me a chance to explain and listened to me and offered all knowledge and help. So it may be worth trying.

  • Who did you complain to? Was the better doctor at the same surgery? He owns the surgery so I don't think there's any point complaining to them and don't think there's any point going to anyone official because other than poor communication and poor patient manner he did offer to do a blood test I just don't know what it was to test for. I'll be glad to not have to see him again so I'm just trying to decide between two surgeries now. Fingers crossed I don't have to face many more like him before finding one who will help me.

    Thanks x

  • In my case it was endo I complained officially to Nhs, they are obligated to look into it and answer, if he laughs at u and make u cry then there surely is an issue to complain about. When I complained I got appointment with different endo, he contacted me personally to invite me for appointment. Same hospital.

  • Your Dad's doctor sounds really good.

    Why not change to them, if you can, you at least know how good they were with your Dad.

    Standing up to your own bully of a doc is not easy when you don't feel well. Why not change, and then when you feel stronger, report the awful behaviour. I am waiting till I am stronger. Ive had legal advice and I take great satisfaction knowing I will shortly be making a claim for medical negligence.

    I was stuck with a truly awful practice, they literally nearly killed me. I changed, now have a lovely doc, who doesn't know much about thyroid, but is very happy to look at stuff from Thyroid UK and follow my/their suggestions.

    Good luck on your journey.

    The folks on here will get you right, it just takes time for our thyroids to improve, be easy on yourself in the meantime.

  • God that's awful! Glad your in a better position now. Thank you for your support. This particular gp missed my granddads stroke many years ago, said it was viral and sent him home. I don't think I'm in the position to complain and don't think it will do much good. He owns the surgery so it's not like there's anyone above him there who could do anything. Luckily I've found this site and know now not to give up and not to believe him.

    I'm really thankful to this site and to BlueHorizon's doctors comments otherwise I would have believed him that my results were clinically insignificant and carried on ignoring symptoms just thinking I was lazy x

  • Hey fellow hypo

    The only thing that's clinically insignificant is your GP

    Due to circumstances I won't go into, I am aware of a patient begging for tests on his heart who died in my GP's consulting room. In front of him, the useless, arrogant, patronising tool. When I'm on the verge of tears in his consulting room, I think of this poor family man who almost certainly died unnecessarily and resolve not to crumple. He shall not have me. The complete and utter sh*t that he is.

    Regrettably the area where I live has a dearth of consultative medics and having changed practices once already, I see little point in moving again and have resigned myself to poor primary care concerning practically every complaint which takes me to his surgery. I can get paid for help at a push but it rankles, doesn't it ? You're fortunate to be able to consider your dad's surgery; have done with your GP's nonsense, re-register and put the finger up to this buffoon.

    Hypo is hard enough without dealing with this imbecile, clearly threatened, as shaws and others have pointed out, as you already know more than him about your familial complaint.

    Good luck :)

  • Thank you Rapunzel. That's awful! I wouldn't be able to continue practicing and definitely not continue being an arse!

    I plan to register at my dads gp next week. However having just spoken to him, his underactive thyroid was found during a wellman check when he turned 50 and his vit d was checked/tested due to a recommendation from a chiropractor. So maybe not as good as I thought but atleast they listened :) fingers crossed.

    If not I will just have to keep changing. Good luck with yours x

  • TSH=5.03 is way too high. Fire the doctor. Incompetent doctors have a habit of making fun of patients when they should KNOW that hypothyroid makes patients feel vulnerable, which requires extra effort on their part to behave in an emotionally-appropriate manner.

    If you haven't been checked for TPO and TG antibodies, now is the time to do that, along with all the other suggestions made in the thread.

  • Thanks Eddie, I'm going to get them done in the new year as I've just had my hep b vaccine and don't know if that will effect it.

    Then get a new gp.

    Do you know why my Ft4 is OK and Ft3 is quite good? He said as this was fine my results were clinically insignificant.

    Thanks

  • I don't know specifically in your case, why your FT4 is in-range and your FT3 is 62% up in range, yet you don't feel well. Euthyroid Sick Syndrome would not apply in a case like this. One thought is that you have thyroid hormone resistance; that is, your pituitary "thinks" that you need more thyroid hormone as evidenced by TSH~=5, but the hormone you have isn't getting into the cells where it is needed to do its job. You need to consider a bunch of possibilities, including nutritional deficiencies, genetic factors (lots of people have been talking about the MTHFR gene defect - see StopTheThyroidMadness.com), whether or not you are harboring autoimmunity (including all types of autoimmunity, not just thyroid), whether or not you have leaky gut/gut dysbiosis (that would contribute to autoimmunity), whether or not you have high levels of heavy metals or other evidence of environmental illness, whether or not you have an imbalance in other hormones (esp. adrenal hormones - cortisol and DHEA). Are you on any type of hormone therapy? There is a known issue with estrogen therapy causing decrease in thyroid output. These are all issues that no GP is likely to have a handle on. Specialists at a place like holtorfmed.com could probably figure it out, but it would cost you mucho moola.

  • That seems alot, do I need to get it all checked?

    No I'm not on any hormone replacement or any medication. The last medication I was on was the contraceptive pill but that was progesterone only due to the combined pill causing migraines. I stopped taking that about a year ago now because it was making me crazy and paranoid.

    I'm not aware of any reason I'd have an environmental illness.

    I'll have a look at the links now, thanks again

  • I agree, it's a lot! Perhaps you have a competent naturopath in your area, you could run all the possibilities by, and see if she can pick the most likely? This is a good example of why the wealthy get good healthcare, and many of the rest of us spend decades (or even the rest of our lives) trying to get well. Guess I was lucky, it took me only 21 years after I got seriously ill, to recover.

  • I'm not sure of a naturopath to be honest I've never heard of one and certainly not in my area.

    Going back to your earlier response, what is euthyroid sick syndrome? And why would it not apply in this case?

    Do you think there's a possibility of my levels sorting themselves out by the time of my next blood test? Or is it unlikely to improve on my own?

    Thanks x

  • I've just had a quick look around stopthethyroidmadness. Although it seems to say that my TSH level doesn't matter, it suggests that if FT4 is low and FT3 mid range or higher it can indicate that FT4 is converting like mad to produce the FT3.

    Is my FT4 14.52 (12-22) on the low side? Or does that mean low as in under range?

    I'm concerned that if my FT4 and FT3 is ok then the elevated TSH may not be due to thyroid problems and could be something else? I thought I'd finally found an answer to my symptoms so it's worrying to think as my FT4 and FT3 levels don't fit in with my tsh my symptoms could be caused by another condition I don't know about.

    Do FT4 and FT3 fluctuate throughout the day as with TSH? Could it be to do with doing the test at 1pm?

    Thanks x

  • Your FT4 is 25% up in the range. That is, it is 25% of the way from bottom to top of the range. It could be higher, like say right in the middle of range. But I don't suggest pushing it up real high. If you overload yourself on T4 then the body could decide to convert some to rT3.

    FT3 fluctuates quite a bit. I doubt FT4 fluctuates a whole lot, since its half-life is about a week. I always do my blood draws a few hours after taking my T3+T4, so I can see what my peak in measurements look like. But that is personal preference.

    There are several scenarios where FT3 & FT4 don't seem to fit in with TSH. Later today, I'm going to post a couple papers from Kent Holtorf, one of which documents that the way the pituitary perceives euthyroidism, does not match the way the body perceives it. Of course, out-and-out pituitary disorder can cause this - I believe that is known as "secondary" hypothyroidism, as opposed to "primary" hypothyroidism, which is the inability of the thyroid to make enough hormones.

  • Thank you. I've had a read up but apparently secondary would cause a low tsh not high?

    Could it still just be hypo/Hashi's even though the t4 and t3 aren't low? X

  • You're right, I was thinking secondary was any control disorder due to the pituitary, but in fact it is only when the pituitary stops putting out TSH.

    I have heard lots of people say that, when you have active Hashi's, your thyroid output can wax and wane. (But although I had Hashi's, I cannot remember this happening to me.) I assume that would be reflected in TSH bouncing around.

  • This makes me so mad for you. This is a totally disgusting way to be. They don't like being told thry were wrong and I've just told the nhs I've been self medicating for 2 years with ndt. Just waiting for the guilt trip as I am currently 23 weeks pregnant. My levels got so low thyroid wise I was almost dead and Gps refused to RE test my thyroid. Have you considered self medicating at all? This forum is amazing and literally gave me my life back. Just been diagnosed with gestational diabetes and I was controlling it well with diet. My blood glucose results were good after each meal and below the level set for me 7.8, but my fasting results in the morning were 5.4 and they wanted it to be 5.3. So they have put me on metformin. My levels have jumped after meals to 8.7 to 8.9 and previous to this they were within range below 7.8 after each meal. I do not trust them as far as I can throw them in all honesty.

  • Hope you get sorted Katie and wish you all the luck in the world with your pregnancy :)

    Have you noticed a difference in your bloods since you have been self medicating?

    I haven't really thought much about it yet as this is the first time I've discovered my tsh is a bit high.

    I'm going to get my antibodies and vits done in the new year then try a different gp surgery and hope for a better outcome.

    If not I don't think I'll have much choice but to go it alone x

  • Thank you, yes it took a good year to get by body to normal ranges. My T4 is now at the top range but my tsh is suppressed which natural dessicated thyroid meds often do. I feel good thyroid wise really good but I was recently slightly over range and the nhs freaked out so lowered it. I was very ill like yourself and was like that ten years in all until it finally gave up almost completely and had to self medicate. The reason I had to tell them very recently was because I had to sit and be spoken down to by a consultant about my bmi being over and they also flagged the t4 being slightly over and I am afraid of blurting out something I regret. If I hadn't of been left for ten years with no help my bmi would be normal. I was a size 8-10 before thyroid issues and went up to a 16 once the thyroid problems kicked in, despite walking 8 miles a day and eating 1 meal. I am now a 14 and pregnant and eat healthily and 3 meals a day.

  • I'm the same, was always an 8 now 12-14 sometimes 16. Have you found it easier to lose since improving your levels? X

  • No it's still difficult but at least I am not gaining anymore and the swelling isn't happening as much, it is going down but much slower. Obviously with me being pregnant though that's on the back burner for now. I've lost a bit but it's slow. A size 12 would be ideal for me. It is so depressing especially if you had a great figure previously. People assume you stuff your face all day lol

  • I know that's what I find most embarassing lol. At my old job people used to ask if I ate because they never saw me eating and I never had any of the biscuits or anything they used to share. I had to tell them I don't eat as much as I look like I do 😂

    I was hoping it would fall off when I got sorted. But not gaining any more would be a plus. If I'm going to gain I'd want to make it worth it haha x

  • Exactly I was eating one meal a day and gaining and when I was skinny I was always eating but pretty unhealthy stuff also. It's as if everything works backwards. Once you get your levels sorted you will feel a bit more in control of that, I do. Hope you find a good gp and they help you.

  • Hi melissaemily, I honestly feel your pain and as for changing GP I am on my 4th and to be honest they are all much the same. The last one told me I was tired and aching because I was obese. Great bedside manner eh? They won't accept private test results because they use the correct parameters GP ranges are as wide as the grand canyon. My private practitioner referred me to a clinical dietician who has given me a diet plan (started November) including supplements and I have already lost a dress size. His ultimate aim is to get my thyroid working again and come off tyrosine but that will take time. Meanwhile tiredness eased, joint pain still sore but bearable and as I lose weight it's easing. Don't give up, persevere and look for the right treatment. You can get other tests but from past experience they will come back within spec. Good luck and feel free to contact me anytime xx

  • Thank you mohjoh. I guess we can only keep trying until we find one willing to listen.

    With the lab parameters, where one can be 0.27-4.2 and another 0.3-5.5 - would the levels still be the same or would they be relative? I mean if my TSH was 5.03 at the lab who's range was up to 4.2, would it be higher at the lab who's range was 5.5?

    Or if the same sample was sent to the second lab would the level still be 5.03 but just not flagged as high? It seems silly for different labs to have different ranges of what they would flag.

    I'm sorry you had to experience such a rude bedside manner about your weight. I'm sure he'd appreciate the same to him if his metabolism was struggling.

    Well done on dropping the dress size! That must have been really hard. I tried dieting but since I would normally eat under the daily recommended cals anyway I was just so exhausted I just couldn't function. Doesn't help being short either, I don't have much room to put it lol.

    I'm hoping that my next test will still show the raised TSH but also antibodies to give me a better chance of someone listening to me!

    Good luck with yours x

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