Under active thyroid

I'm so upset and frustrated! Want to cry and scream at the same time! I spoke to my GP over the phone (as they couldn't see me for two weeks) and she confirmed my thryoid results were within normal range (mine was 4.74 - range is up to 5.5) and I needed to stop worrying about them. She won't retest as there's 'no point' She said the high cholesterol was unrelated and she has booked me in with the healthcare assistant to change my lifestyle!! I'm 31 years old with three children. I don't smoke and rarely drink. I eat a balanced diet most of the time so I don't understand why I would need to change my lifestyle! I feel so devastated that I'm not being listened to. All of my symptoms point to an under active thyroid - I'm so fatigued all the time, feel cold all the time, have stiff muscles, dry skin and my hairdresser noticed some hair loss, my periods are heavier than they used to be and my mental state is so much slower than it was. My grandmother and aunt both suffer with an under active thyroid so it runs in my family. I have private health insurance but when I asked to see an endo they said I need to get a referral from my GP (which she isn't going to do!). I'm suffering with anxiety on top of all this and don't feel like I'm being the best mum I can possibly be because of all my symptoms. I don't know what else to do. My friend told me to go to a&e but I don't want to waste their time 😥

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  • I'm so sorry you're getting the brush off from your GP. From your symptoms (and family history!) you're definitely hypothyroid. 4.75 is way too high as I'm sure others will confirm. You probably need to change your GP if she won't act on your symptoms. If you have the funds you could get thyroid tests from an online provider such as Blue Horizon, which many of us do, and get a full profile of results, then you'll know what you're dealing with. It wouldn't hurt to get Vit B12, folate, Ferritin and D tested too, as they are very much intertwined with thyroid metabolism.

  • Thanks for your reply Jadzhia i do already suffer with a b12 deficiency and have 3 monthly injections for it. I've changed my GP a few times over the years but all of them have been useless when I've explained my symptoms. I had my thyroid tested a few years ago and they said it was boarder line but no further action required! I don't have the funds at the moment for private testing but I think I will need to save up and pay for it as I just can't continue like this. Everyday it is getting harder to cope with these symptoms and being constantly told there's nothing wrong with me doesn't feel me with much confidence 😪

  • Glad you're getting treated for B12. :) I'm 'border line' like you, have yet to be prescribed Levo, but at least my GP hasn't dismissed me, she took it seriously that my mother had Graves, but at the same time she didn't want to prescribe anything as yet as it might 'push me into hyper'. I've a phone consult tomorrow and am hoping to convince her to let me try it at least!

    It's ridiculous, isn't it? There is definitely something wrong and there are plenty here with similar symptoms/stories who will support you. :)

  • Pleased to hear your GP is listening and taking your symptoms seriously - wish I could find a decent one! I'm just going to have to keep pushing for more tests or pay for private testing. Before this I rarely saw the GP but now I feel totally let down by the NHS who won't take my symptoms seriously.

  • I was told my thyroid was "borderline underactive" in 1990. I didn't get my first prescription for levo until 2013.

    I don't have autoimmune hypothyroidism so my thyroid wasn't deteriorating in the way it normally would do. I was just left to suffer with subclinical hypothyroidism for 23 years.

    The moral of this tale? Don't do what I did. You will regret it. If you have hypothyroid symptoms and evidence that your thyroid is struggling (and you do have evidence with your high TSH), then in your shoes I wouldn't wait very long.

    Change doctor if you think it is worth it. But ultimately I think you will have to treat yourself.

    You can do a finger-prick test privately without involving your doctor.

    There is this one from Blue Horizon :

    bluehorizonmedicals.co.uk/T...

    And there is this one from Medichecks which is currently on special offer :

    medichecks.com/find-a-test/...

    Both tests cover the same things.

    To use either test :

    1) Order the test online.

    2) You will be sent a kit through the post to allow you to prick your fingers and tubes for catching the blood.

    3) Package up the blood and send it through the post asking for "Guaranteed next day delivery by 1pm"

    4) Results are sent via email.

    When to do the test :

    1) Must be done Monday - Thursday, not Friday - Sunday. The blood has to be posted the same day it is taken, and must arrive at the lab no later than the day after it is taken. There is no point in doing the test when the Post Office is closed and there is no point in doing the test if the lab will be closed when it arrives.

    2) Decide which day you will do the test. The day before, don't eat or drink after about 9pm - 10pm, apart from water which should be drunk freely. You don't want to be dehydrated when you do the test.

    3) In the morning, don't eat or drink (apart from water) until after the test. Aim to prick your fingers around 7am - 8am if possible. The later it is the lower your TSH will be (which is not usually desirable).

    4) Package up the blood. Take it to the Post Office before their last delivery time for "Guaranteed next day delivery by 1pm". In my local Post Office I can't post after approx 4pm for this kind of service, but you will have to check for yourself what the latest posting time is where you live.

    5) Once you have your results copy them into a new post here and ask for feedback.

  • When you have the funds I am sure your doctor would refer you for private tests..Private treatment usually requests a dr referral and this is for own safety, as the Dr would be aware of the fact they would only refer you to a bona fide situation

  • Have you read upon B12 deficiency. There's a healthunlocked forum called PAS. 3 monthly B12 injections are not frequent enough for many people. I self inject fortnightly. Also TSH of over 4 too high. Needs to be around 1 or less. I take NDT medication and self medicate now. Leaving your health in hands of GP can mean a lifetime of misery and disability. Sorry you're feeling so unwell. You have my every sympathy. I've been there.

  • Unfortunately I have a fear of needles so really couldn't inject myself. I did buy some b12 spray to help in between the jabs but it wasn't very successful! I will have a look for the PAS forum thanks!

  • The test from Blue Horizon isn't actually a needle :-) Its a little plastic device which you just press against your finger and this just triggers a little pin prick and surprisingly that starts enough blood flow to fill the little container they send. The pin prick will probably make you jump, but it definitely isn't a needle and you can't see what happens because the thing that pierces your skin is tucked away inside the device. Hope that helps.

    Also many Endocrinologists don't require a GP referral. I did get a referral (after a year of pestering) but there was a 3 month waiting list. So I said I would go private and they did arrange an appointment which came through within about 4 days. However, did a bit of research and couldn't find any information on the Endo I'd been referred to. So I just told the GP I wanted to see someone of my own choice, got a recommendation from someone in this forum and then gave the GP the Endo's name. But they didn't send out another referral and the Endo I saw didn't need one.

  • Is once a month enough

  • It all depends on what's best for you. Some people find 3 monthly ok, some monthly some weekly. It depends on when symptoms start to return. Good thing is is that you cannot overdose on B12.

  • I find at 2 week i get fatigue again but its a monthly shot

  • It would definitely help you to know if you have thyroid antibodies, and a private blood test c £99 would tell you this. Low B12 will be interfering with thyroid function in itself. My daughter has a tsh of 3.5 with no antibodies and low B12, ie the low B 12 looks to be stressing the thyroid.

    Do you know if yr low B 12 is caused by autoimmune gastritis? Which untreated can become Pernicious Anaemia.

  • I've had b12 for over a year now and the GP ran all the usual tests but couldn't find any reason for it! My cousin also suffers from it so not sure if it's another inherited condition? I think I need to save for that private blood test.

  • The test for antibodies to intrinsic factor isn't reliable, it works for about half of AIG sufferers, people report a neg result, then a year later a positive. So you may well have it.

    Yes there do seem to be genetic links to AIG/pa, some of the genes have been identified.

  • Is your GP your primary physician? I'm asking because in the US we have to have a primary but they can be a specialist. Mine happens to be an internist and luckily very pro active with thyroid stuff. I know how frustrating it can be.

  • My GP is purely general practice. Sometimes I don't even get to see the same GP as she doesnt have any appointments! With our NHS system you have to see the GP who refers you to a specialist (if they feel it necessary) unfortunately money comes into this a lot of the time and people are not treated properly! I'm also frustrated as I pay for private healthcare but they are saying I still need the GP to refer me to the endo! She's adamant there's nothing wrong with me so can't see her agreeing to do that!

  • yikes! Good luck. Sorry to hear that

  • Have you mentioned to your GP that you have private medical insurance and are willing to go private? If you go private it will not cost the NHS anything so your GP should refere you without making any problems, they just need to write a letter.

    My GP refused to refer me to an endocrinologist until I mentioned private medical insurance...then she said she'd do it.

    Bully them into refering you, cry at the appointment, say you are at the end of your tether...if it isn't your thyroid (which from results seems to indicate it is) then it might be some other hormonal imbalance and seeing endo might help.

    Point to the fact that you want to manage your own health but they are making this difficult for you. Say you fear for your own mental health if this goes on...I know a bit melodramatic but believe me, I know of someone with no thyroid issues whatsoever being refered to an endo after saying that to the GP.

    Also, with private medical insurance (I know with AXA PPP it's like that) you get a certain amount per year for private medical tests on top of medical appointments. If you manage to get a referral the endo will most likely want to run his own panel of tests.

    Maybe 1st speak to GP secretary about getting a private referral letter, if that fails make an appointment and prepare to nag, bully or be dramatic...

  • Thanks I'll try that! Haven't mentioned the private medical insurance as GP wouldn't let me get a word in edge ways regarding thyroid symptoms! I have been to the GP over the past few months suffering from anxiety and she's now referred me for CBT! I totally broke down a few months ago and she claimed I was depressed (nothing to do with any of my symptoms apparently!)

  • I just had to comment on this as it has so many similarities to the situation I was in until a few years ago. Three children, no energy, weight gain. Doctor testing me telling me I was OK and then refusing to re test. Hair loss, weight gain. Also it runs in my family.

    Firstly you are hypo as 4.75 is high.

    I stupidly believed them and my levels went to almost non existing. I now self medicate and have never had an nhs diagnosis. May be worth thinking about. It takes time but you can't be like this with 3 kids as you need energy and it looks as if the NHS will just leave you like they did with me.

    You need to get your health back in order to function properly for your kids and you.

    Have you thought about trying NDT? It takes a while to build up into your system and can be purchased online but it's worked for me.

  • Thanks I'll have a look into it!

  • If you need any pointers on where to purchase inbox me or put another post up asking for others to inbox you where they get there's. It's perfectly legal and many people have to do it. With or without a diagnosis. You also have to test yourself privately and blue horizon is a good one to use. Just to monitor your levels. Hope you get this sorted.

  • Thanks I'll look into it. Glad you're feeling better now x

  • I think you can insist your GP refers you to a private endo, you have health insurance, so it's no cost to them, you just tell them that's what you want and off they go. You may need to find a private endo that is accepted through the health insurance, perhaps ring them first and ask them what they need from your doctor. Docs don't care about the referral if you have the insurance, so just tell her that's what you want, there isn't any reason for them to not do it. If she still won't then ask the surgery to give you another doctor who will refer you or ask the practice manager to write a referral letter. Don't go wasting your money on private blood tests when you have the cover, the private endo will do all that for you and will probably insist you have them done all over again anyway! I hope you get some luck with the doctors! From experience it's a nightmare trying to get them to listen, so just keep strong and as my own doctor told me, 'you may have to shout a lot louder to get heard'.

  • Your cholesterol level will come down if you are put on levothyroxine.

    Try to find The Dummies guide to Thyroid" its a little out of date but very informative.

  • I take my cholesterol Jed's Crestor 40 mil. And my cholesterol doesn't budge.

  • I am falling asleep every where . I am always tired . My hair is brittle. My nails are brittle. And I drink synthroid 100.

  • No idea what you are trying to say on this thread .I was responding to someone else who is not on levo and saying that going on levo should reduce cholesterol as a by effect of providing thyroid hormones.

    Had never heard of Crestor but googling tells me it is a statin ,which I have stopped taking since reading " The Great Cholesterol Con" by Dr Malcolm Kendrick.

  • hun, you need to go to a different doctor - your hypo, i was 5.7, and now its coming down after being put on 50mcg levo.

  • Glad to hear yours is coming down! If my range was 5.5 the GP said she would consider retesting my thyroid but as it stands there no point in her eyes!!

  • Some times you can even ask the GP sec to write the letter for a private referral, GPs CANNOT stop you going private.

    I have already done this just incase my GP won't respond to new blood test results this wk.

    I have a low T3 and feel utter cr.... Strong enough to fight tho, the headaches and thick head is just so debilitating x

  • Do I literally just ask the GP to refer me then? I've never used the private insurance before so not sure how it works! I know what you mean I feel terrible - some mornings I struggle to do the school run - thankfully I don't have a job at the moment - I really wouldn't be able to cope!!

  • Yes, ring the secs up, and ask for the letter they then send it direct. You phone the endo sec up and tell them a letter is on its way, they will then give you an apt.

    Good Luck, if I don't get a good response from my GP on Friday I'll be doing this as well.

    I have been off sick for over 3mth, first with depression, now more informed and realised I'm low on T3 and only just able to get out of bed some mornings

  • Be careful when going private, you could end up with a diabetes specialist. Ask for recommendations on here stating what region of the country you're in. Don't just assume that private means better, there's plenty of sharks out there as I've discovered.

  • Lehec, did you have this test early in the morning, and fasting? That's when TSH is highest.

    You don't need to change your lifestyle. Cholesterol has nothing to do with lifestyle, it's made in the liver. And, it's made in the liver for a reason : the body needs it! It is an essential nutrient, but, as doctors know nothing about nutrients...

    And it doesn't matter how much cholesterol you consume - the liver will just make less. If you consume less cholesterol, your liver will make more. Because we need it.

    And it doesn't cause heart attacks or strokes - you're more likely to have a heart attack if you have low cholesterol - or if you take statins!

    The reason yours is high, is because your T3 is low - although they never bother to test that, so they wouldn't know! It's just that when T3 is low, the body cannot use cholesterol correctly, so it accumulates in the blood - which is why you test high in a blood test - the rest of the body will be starved of cholesterol.

    So, if you have to see someone about 'changing your lifestyle' (poof poof poof) just smile sweetly and say yes, yes, yes - your fingers crossed behind your back... But an absolute no to statins!

    As for your thyroid, your doctor obviously knows very little about it. You are hypo as soon as you hit 3. And in some countries, you would be treated at 3. But, was this the first test that has come back high? Or is it one of a series? If it's the first one, then it would be reasonable to ask for a retest in six months - your doctor is very unreasonable in saying there's no point in further checks. However, if this is just the latest high TSH, then your doctor should be testing other things to get a better idea of what's wrong : FT4 and FT3 (although the lab would probably refuse to do the FT3!) and antibodies.

    But, in any case, I would not give up, if I were you. In three months time, get another test somewhere, somehow. It's pretty certain you do have a problem, but what that problem is, nobody knows because they're not looking, are they!

    Good luck. x

  • Hi thanks for your reply. The test was done around 11.30am as we have a sit and wait clinic for blood tests (there were 30 people in front of me even though I arrived early!) I had a blood test done for thyroid a few years ago and they said it was boarder line but no action needed. It's only because I've been doing my own research that I've managed to practically self diagnose my symptoms! I'm going to see if I can get a referral to a private endo on my healthcare insurance. Totally lost all faith in my GP now x

  • Yes, I don't blame you! OK, so at 8.30, your TSH would probably have been over-range! Sounds like a terrible system you have there for taking blood. Trouble is, doctors don't realise that the TSH depends on the time of day it was taken, and don't make allowances for that. And, had you fasted over-night?

  • Yes it is terrible! I was told I couldn't see a GP to discuss my results for two weeks as they are fully booked!! Yes I had fasted overnight - although I did have a cup of tea in the morning!

  • Well, without that cup of tea, your TSH could have been even higher.

    That's one of the advantages of doing a home pin-prick test - you can take the blood as early as you like, and then have your cup of tea! Get your TSH nice and high. Problem is, your GP probably wouldn't accept private tests. She doesn't sound very open-minded. :(

  • That's exactly what I thought! I very much doubt she will listen if I get a private blood test done! I'm just going to have to keep pushing for an endo appointment x

  • Yes, I think you are. But, don't let him take blood in the middle of the day! Some of them like to do that. Just say that you'll make an appointment another time. :)

  • Ok thanks I'll remember that! I'm 3 weeks overdue for my b12 jab - do you think that would have any impact on my blood results?

  • Only on the B12 result, I would imagine. No, I don't think it has any effect on your TSH. However, you must be feeling ghastly with a low B12.

  • I'm shattered and I've gone down with a cold so feeling very sorry for myself! The nurse who administers the b12 jab has been on holiday so I'm well overdue for my jab!

  • Shouldn't someone be replacing her??? That's not good enough. When does she get back?

  • She's back next week so I've managed to book in for Wednesday if I can make it till then 😞

  • Fingers crossed! :)

  • Hi Lehec84. Firstly, I'm so sorry you are going through all this because of your GP who clearly hasn't a clue about hypothyroidism apart from what they were taught over a few hours at medical school and most are certainly not up to speed with the latest findings on this tricky condition. Unfortunately many say they are too busy to swot up on it too or to attend symposiums.

    My local phlebotomy clinic is walk-in too and a couple of years ago I had "the long wait" looking at the ticket numbers moving soooo slowly to my turn, finally at midday!....and yes I got skewed results which meant that my GP didn't increase my levo even though I had raging symptoms still.

    Last time I went to the phleb clinic they had just started a pre-booking system for those that needed early morning fasted blood draws only rather than those who would only use it for their convenience. I got one at 7.30am!

    Maybe your clinic has similar, sometimes they don't advertise it very well.

  • I will have a look. Unfortunately nothing is very well advertised at our surgery! I had to ask for a b12 blood test last year after reading up the symptoms but GP still wouldn't accept it was that - apparently mine came back just over the range so thankfully they couldn't argue with the results and I was allowed to be treated!! Now I have another fight on my hands but everyone on this group is so supportive and has made me feel that I must not give up!! x

  • I ask the GP for a note to take to the hospital phlebotomy department which opens at 07.30am .There is usually a queue even then but I have always been out by 08.15.

  • Hi Lehec84,

    I can totally understand your frustrations. I agree wit some of our friends here and advise you to get a second opinion, I had too. Also ask for all your bloods to be checked. You may be anaemic. A lot of the symptoms go hand in hand and it is quite common to have underactive thyroid, B12 deficiency, pernicious anaemia and calcium deficiency. I have the lot! You also want to get checked for any thyroid antibodies too. If they come back positive, then it should prove you have a thyroid condition as well. I am assuming you are not currently taking any medication for your thyroid?? Whatever happens with future tests, never take the medication together with possible calcium and or anaemia and any future thyroid medication, they have to be taken individually otherwise they will not absorb properly. Also never take the medication before a blood test. It will give a false reading if you do. Let us know what you decide and whether you seek a second opinion.

    Do you sleep a lot? Do you drop off, without realising, or sleep for many hours and then when you wake up, still feeling very tired?? Do you suffer with insomnia? Nails brittle, skin dry/itchy? Do you get very irritable as if you are on a short fuse? These are all classic symptoms. :)

    Take care and keep in touch :)

  • Hi yes I have all those symptoms you mentioned! My husband works long hours so I'm on my own a lot with three children who are wonderful but very full on!! My energy levels are so low and I just can't seem to get motivated for anything!! I could sleep for so long (if I was able to). I did have a full blood count and apart from the high cholesterol everything seemed to be ok. I don't currently take any medication for thyroid I'm still trying to get my GP to accept that there is a problem with it! x

  • Lehec84 I really hope you get sorted out - I understand exactly how you feel (too well!).

    I wanted to suggest if necessary you could pay to see a private GP and ask for a referral from them to the private endo. It's not fair and you shouldn't have to and hopefully your NHS GP will refer you but if you don't get anywhere with her it's another option.

    It depends where you are in the country - there tend to be more around big cities. Good luck - hope things improve soon :)

    x

  • Thank you 😊

  • Hi,

    As far as I am aware a Doctor will not refuse to do a referral for a private consultation.

    My recommendation would be to see someone privately if you have that option as I didn't do that when I was diagnosed as under active at your age with 3 children under 5.

    I had the opportunity back then but I didn't really follow it up and wish I had now I'm nearly 60 and starting to get more symptoms.

  • I will certainly give it a shot! Got nothing to lose! It's just very difficult when I have to speak to such a headstrong GP who won't listen to any of my symptoms and sees that nothing is wrong with me!! At one point I had 3 children under 5 and it's exhausting. Unfortunately the GP has been telling me for years that my tiredness is due to being a busy mum - obviously nothing to do with having b12 deficiency and a possible under active thyroid!!

  • Back in time and up until the mid 60's - if any one had raised cholesterol they had their thyroids treated 😊 That was before statins. Sadly Docs of today have only been trained to look at test results on a screen and have trained in establishments sponsored by Big Pharma. Looking and listening to the patient are long gone 😣

    Stick with the advice above and you will be well in no time.

  • Hi, Im so sorry to hear you are having this experience. I have had this where doc says bloods are fine but you still feel awful. Magnesium, vit b and zinc are vital for converting your meds into usable energy.. if they don't convert you just feel tired and wired as they are useless. Lack of vit b is called pernicious anaemia which causes tiredness and anxiety. I find if I eat lots protein, eat red meat for b vits, cereals fortified with b vitamins and less breads I feel much better. Also take epsom salt baths from chemist they are full of magnesium so they really help with the anxiety.. I sleep like a dream after them but you need to go very easy on them a small handful in warm ( never hot ) bath is perfect once or twice a week to start. Take a supplement of the 3 above and vit d and i'd be very surprised if you didnt feel a bit better. I have tried everything over last 6 or 7 yrs and this works for me :)

  • sorry I also meant to say my bloods never read low for vit d , or vit b but the supplements of those plus zinc and magnesium still really helped me... maybe I just need higher levels than other people

  • My husband has been diagnosed with hypothyroidism due to taking Amiodarone for A/F, thankfully he is now off of it.. His TSH is 3.4 and he has been on 50mcg of levo for about 2 months and his GP wants him to continue this for the time being. His TSH was about 7.4 at the start so it has come down, can somebody tell me what the normal range should be has his GP has said that the 3.4 is borderline.

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