Help needed

I have had bloods done TSH 3.47 T4 12.5 feel absolutely awful...beyond tired, no clarity of thought,foggy head, freezing cold and had weight gain over 2 years even though i eat a squeeky clean diet AND have been going to the gym weights and cardio 4 days a week. Ferritin and folate were bottom of scale but also ith the "normal range" i have started supplimenting B12 is mid 500's everything else ok.. Doctor tried brushing me off with CFS and also suggested antidepressants which i refused coz i KNOW it isnt that. Unable to go to gym in the way as was as i just do not have any energy whatso ever.. Had a referral to endo now waiting ( up to 6 month waiting list) anyone else get these horrific symptoms on these levels which are considered normal? Please don't tell me they are going to leave it until im well out of the range as im already feeling incredibly unwell. Any advice welcome

52 Replies

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  • Suggest you get antibodies measured, because if you have them you have a much stronger case for asking for medication. Best time to have blood draw is first thing in the morning when tsh is highest.

    Ferritin needs to be at 70 or higher, and where are your free t4 and free t3 readings? Doh! Your doctor is a slave to the tsh.....

    Maybe get a full profile done through one of the private labs..... Its about £90 and you deal direct with the lab yourself. Details here...http://www.thyroiduk.org.uk/tuk/testing/private_tests.html

    Xx g

  • Thankyou the free T4 was 12.5. T3 wil only be tested with the endo..i am hoping when i get to see him/her i will be more clued up. my doctor didnt even request the thyroid test i ticked it myself as my symptoms were extreme fatigue and titedness and foggy head all the time. Good job i did tick it or i would be none the wiser

  • Is antibody test the T3?

  • No, antibodies and T3 are different things.

    People with high antibody levels have a condition called either autoimmune thyroid disease or Hashimoto's Thyroiditis (same condition, two different names). Hashimoto's is the commonest cause of hypothyroidism in the UK, Europe and many other parts of the world. About 90% of cases of hypothyroidism in the UK are caused by Hashimoto's. Look at the table on this page :

    labtestsonline.org.uk/under...

    The antibodies attack the thyroid and destroy it - this process is quite slow and can take decades. The antibodies wax and wane, making any thyroid function tests fluctuate a lot and the sufferer usually feels really grim. There are ways and means to try and reduce your antibody levels, by means of diet, although this doesn't work for everyone. In many cases going gluten-free will reduce antibody levels. Some people find that what works for them is going dairy free. Some people have to do both.

    When enough of the thyroid has been destroyed the sufferer becomes permanently hypothyroid because the thyroid can no longer produce enough thyroid hormone.

    The medical profession doesn't care about people having antibodies. They tell people that antibodies don't cause a problem. They sit back and wait for people to become severely hypothyroid before they will treat them (reluctantly) for the lack of thyroid hormone.

    The thyroid produces several hormones, the main one being thyroxine or T4. T4 is a prohormone. That means it has little or no activity itself, it acts as the raw material for creating another hormone known as T3. The thyroid produces a small amount of T3 directly, but most T3 is produced in organs around the body by conversion from T4. It is lack of T3 that makes people hypothyroid, and an excess of T3 that makes people hyperthyroid.

    Getting a full profile done is the best way to find out what your problems are. The best one for most people is this one :

    homebloodtests.co.uk/

    Go to the link above, look down the left hand side of the page and click on the blue badge with the words "Thyroid Check Plus Ten".

    Also read the link given by Galathea above to find out about discounts you can get and other testing sites.

    It would be helpful if you got a vitamin D level done as well, because this is often deficient in people with thyroid problems.

    vitamindtest.org.uk/

    betteryou.com/vitamin-d-tes...

    Once you have the results post them in a new thread and ask for feedback.

  • Wow...thankyou for this info..

    I am already gluten and dairy free...to be honest going back 3 years ago i originally thought that was the initial problem!.. Then came the weight gain regardless of how healthy i ate and how many calories i burned in the gym...stil i put this down to wrong micro management of the things i was eating after all we are all taught calories in has to be less than calories burned yes? Well WRONG coz i have blown that theory right out of the water...i have kept a food and exercise diary thats how convinced i was i was the one doing something wrong!! And then the fatigue started creeping in and NOW it cannot be ignored as i seemply have no energy to boil a blooming egg! My head feels as if its in some kind of vacuume and my memory is seriously worrying me...i help to look after my mother who has alzeimers and some days her memory surpasses mine!!!!!

    I am going to read the links you have supplied..i have never done so much research in my life!

    If you do choose to have these tests via the links supplied what then? Is your own GP bound to do something about it?

    My problem is my results are just within range but i feel so awful my TSH level is 3.47 (the lab level is o.27-4.2)and my T4 is 12.5 (lab level 11-25)

  • Unfortunately no, your GP isn't obliged to do anything until your TSH is above the range (when you are positive for antibodies and you have symptoms - but they rarely test for antibodies), or your TSH is above 10, or your Free T4 drops below the range.

    Doctors still don't treat in many cases because they say things like "Everyone gets tired, everyone's memory gets worse as they get older, you are depressed and anxious so have some anti-depressants, you are putting on weight because you eat too much and don't exercise enough, all your symptoms could be caused by something else they aren't exclusive to thyroid, a TSH of 11 is only slightly above normal so it isn't serious and we can wait a bit for treatment because you may have a problem which resolves itself given time so we'll re-test in 3 months or 6 months or next year or never,..."

    And so it goes on. Excuses, excuses, excuses from the doctor. And anyone who puts on lots of weight with thyroid issues is assumed to be lying if they say they don't eat a lot and do lots of exercise, because patients always lie as far as doctors are concerned.

    Some doctors won't treat until TSH is over 10 no matter what else is happening.

    To read what criteria doctors are supposed to use, see this page and click on the various tabs on the left hand side of the page. The one most relevant to you is "subclinical hypothyroidism" although officially that only applies when your TSH is over the range.

    cks.nice.org.uk/hypothyroid...

    If you can't wait for your tests to come back at a level that your doctor will treat then I'm afraid the only alternative is to treat yourself. Getting the testing suggested above then getting your vitamin and mineral levels up to optimal will help you to feel better. If it still isn't enough to resolve your symptoms then you may have to treat yourself.

    Be aware that if your pituitary and/or hypothalamus is damaged then you may not be able to produce enough TSH to ever have a level of 10+.

  • This is infuriating my gp was a bit like this....he says what is your diet like ...i told him his chin hit the floor so then he asked did i do any excercise...i told him again his chin hit the floor so then i asked HIM if he could explain to me why a person could eat a clean diet and have less caleries going in than was being burned how it was possible to gain weight with no medical problem...basically he couldnt...he then asked me if i was "low" i said no im not low i am absolutely exhausted freezing cold with a memory like a dementia patient...it was then he said he would refer me as i think he could see i wasnt being fobbed off with lame excuses! I then came onto the internet and am fast on the way of becoming a proffessor in the subject!

    I have just found out you can buy Levotirion over the counter in Turkey and i go there twice a year!!! What is it with this country decent medication is kept a guarded secret yet statins and happy pills dished out like no body's business!

    So while waiting on the list for an endo...i now know that if i do not get any joy i will be self medicating as there is no way i can continue to function and have a quality of life feeling the way i am feeling and am simply not prepared to sit back and feel 10 times worse while starting to look like the side of a house!!!

    This is absolutely insane

  • Welcome to our forum,

    It will be a big learning curve for you but members will support you along the way.

    Due to the guidelines, the British Thyroid Association State that we should not be given thyroid hormones until the TSH is 10. It is barbaric and must be the highest TSH in the world for being diagnosed. Some countries prescribe after TSH is 3 or 5. plus symptoms.

    The symptoms are awful and we don't quite know what's going on and we struggle, Probably you've never heard of hypothyroidism before - I knew nothing about the thyroid gland. I certainly do nowadays.

    Unexplained weight gain is a common clinical symptom (doctors don't know any clinical symptoms nowadays - the computer print-out tells the doctor the diagnosis ignoring all clinical symptoms. Also a higher cholesterol (don't take statins as they can damage our muscles if hypo). Many doctors prescribe them.

    Galathea has given good advice because if we have antibodies (an Autoimmune Thyroid Disease called Hashimoto's) we will be prescribed levothyroxine. If we don't have antibodies we wont be prescribed until the TSH is around 10.

    Fortunatley some doctors prescribe when the TSH is just out of range (around 5).

    This is the procedure for the best outcome (if that were possible). You get the earliest possible blood test and fast. You can drink water. If you are on thyroid hormones you leave about 24 hours between the last dose and the test and take it afterwards.

    Always get a print-out with the ranges from now on for your own records and so that you can post if you have a query. The ranges are important as labs differ in their machines.

    Also ask for Vitamin B12, Vit D, iron, ferritin and folate as we can be deficient.

    It is a big learning curve for us if we want to recover our health.

    I would reduce your keep fit at present as your receptor cells need what little thyroid hormones you are producing. The Active one which drives our metabolism is T3 (liothyronine) is needed in the billions of our receptor cells. Exercise when not on an optimum of hormones can reduce what little we have circulating.

    You can have a private appointment with a recommended Endo if you wish and for a list email louise.warvill@thyroiduk.org.uk. Choose an Endo and then you are allowed to put his name on the main board asking for a private message to be sent to you about others' experiences. We don't put any info on the main board about doctors/endos.

  • Thank you so much for taking the time to reply to my post

    Firstly a TSH of 10??? 10?? Omg if i feel like this on 3:47 what on earth am i going to feel like at that level? And even then will the ideal optimum for the doctor be to get me where i am now which is clearly way off the mark?

    How long on average does it take for levels to alter for it is therefore quite possible i am left to feel like this for years? Now THAT is a very dunting prospect

    As for the gym i have naturally had to cut down as i just do not have the energy to complete a workout which is why i know there is something seriously amiss as fitness has been a large part of my life since i noticed little symptoms 2 years ago...i follow quite a strict vegetable based diet not eating any rubbish yet i have still managed to put on weight?? That is SO obvious something is not right and for me who works so hard to keep healthy im very disheartened by this....i do not want to be huge and unfit before i am eligible for help...thats just unethical by any standard.

    Maybe on that note i should push myself to total fatigue as it wil get an earlier result? The doctor was quick to suggest anti depressants so what is the hold up on thyroid meds when symptoms are staring you in the face ? are they majorly expensive? Or is there some kind of government conspiricy to have people so ill they will end up on other drugs too? This just does not make sense atall and is a public outcry!

    As for going private what difference could it make? If they do not prescribe till TSH level is over 10? My blood result would be the same if done in NHS or private?

    Is it true only endo's do T3 or can the GP ask for these too?

    And this is a dead cert no one gets treated until TSH over 10 even with symptoms?

    So many questions i know i do appologise...i have learned so much in a week!!!!

  • Folate and ferritin in range but bottom so i have starting suppliments B12 was mid 500's so also supplimenting

  • My TSH was 3.32 and I could hardly move... so you're not alone! :)

    2 NHS endocrinologists said I was the picture of health and in the end my GP said he would accept a private diagnosis of hypothyroidism due to thyroid antibodies and then he would treat me. Following a private diagnosis, I'm currently rebuilding my adrenal health so that I can then get the thyroid right after that (though I'm on a low dose of T4 in the meantime).

    Good luck :)

  • Well i'n not a conspiracy theorist, but the lack of thyroid hormones makes you wonder if something else is going on..... Thyroid medication ( levothyroxine. T4) costs around £2 per month per patient. T3 is more expensive at £200 plus but there is no reason for this except a silly pricing system.

    Fortunately, for now, ( and unlike some other eu countries) we are allowed in the uk to import medication bought abroad for our own use. I was treated by the nhs but gave up after 20 odd years and decided to self medicate. It costs me about £100 a year, i no longer have thyroid issues so am happy. I obviously worry about what i might have to do in the future, but no point in worrying about what might not happen.

    Some people get treated with a tsh of less than 5, but it all depends on symptoms and the doctors ability to be empathic. As there are no official NICE guidelines in the uk, its all a bit hit and miss.

    Get yourself a full set of tests so you know where you stand, and take it from there..... No point in hassling an endocrinologist if he can smugly turn round and say t 3 is normal and no reason to suspect thyroid problems..... Best to know in advance in my book.

    Xx g

  • Very good point i had absolutely no idea you can self medicate for this but i do now....and funnily enough i was just having a conversation with my friend in Turkey who buys Levotirion T4 over the counter there!! So alas no points for guessing what I am going to be doing should i get no joy here!

    Unafraid of self medicating as i always self medicate for little ailments ect rather than go doctors infact this is the first time i have been to the doctor for 8 years!!!!

  • Self medicating is fine, but you need to go slowly with it, double the dose doesnt make you feel twice as well, as many have realised....... You need to make sure everything else is optimised, ferritin, b12' d 3, iron and folate and if you dont the thyroid meds can make you feel much worse. It is a privelidge afforded to us in the uk, but we have to be very careful we dont stuff up and ruin it for everyone else.

    Have a look at the metabolic temperature graph on the dr rind site.... Its really really useful and lets you see where you are....

    Xx g

  • Many private doctors don't prescribe to the 'must be 10', thankfully. I did mention above that some doctors do prescribe but you aren't aware yet who will. Speak to your GP. Levothyroxine is about £2 per month.

    Some doctors do prescribe with clinical symptoms when you're just over range. Not all wait till the patient is on their knees. Pity those who are told when they feel so unwell that they are 'normal' which is shorthand for 'your bloods are in range therefore there's nothing wrong with you'.

    Many members do self-medicate - it's not ideal but .........

    Once we are diagnosed with hypothyroidism, we get all our prescriptions (for whatever illness) free of charge. Not that it's a consolation but how serious the condition can be if untreated/undiagnosed. We have to read and learn if we want to be at optimum health. A couple of links from Thyroiduk.org and you will see how we, the sufferers, are more understanding than the 'guidelines'.

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

    Every one of the billions of receptor cells in our body have to have thyroid hormones in order that our metabolism will work efficiently.

    You have had a shock but you will recover and feel well again. I am and I wasn't diagnosed until my TSH was 100. If you click on my name it will take you to my profile if you wish to read.

    P.S. Our brain has the most receptor cells and the heart needs sufficient to work as well. We usually have low pulse and low temps as well which will rise when on optimum hormones.

  • TSH of 100 got to be the world record!!! Well done! Jeez

  • I've seen people mentioning they had levels of close to 300, but not often.

    Mine never quite made it to 6. Nevertheless I was on my knees and was inches away from being permanently bed-ridden.

  • Think i am slowly getting to the bed ridden syndrome im tired of being tired

  • Do NOT push yourself - that way lies adrenal hell! As your thyroid functions less and less, the adrenals start to push out cortisol to try and compensate. The trouble is that even once you are being treated for thyroid, it takes a long time for the adrenals to get the message and calm down.

    By the time my TSH was 3.6 I was sleeping 15 hours a day, and barely functioning the rest of the time. I had to go private for a diagnosis. I suggest you do the same because by the time your TSH is 10 permanent damage is likely.

    Louise will send you the list. But even some of the endos on the list are less than 100% sympathetic in all scenarios, so before you choose someone ask for members to message you privately with their experiences of the doctor concerned, and ask specifically if they went to get a diagnosis with a relatively low TSH.

  • Wow really thats the same as my TSH level...i thought i was just being ridiculous...i want to be in bed all the time but just cant i am a lone parent have 5 kids 3 are autistic and i also help to care for elderly parents my dad has bowel cancer and my mum alzeimers...i mean omg i need my energy im practically crawling through the day...im 48 and never had an illness in my life until now...because im usually so well people actually think im putting it on...some of the stupid messages ive recieved are incredible " your over doing it at the gym..not eating enuff...eating too much....eat more steak...take a holiday...start taking suppliments for this that and the other" im quite sick of it all

    Mad isnt it?

  • Of course you aren't being ridiculous! Different people respond differently. (And from what I can see men generally cope much better with a raised TSH, often not experiencing symptoms till their TSH is up in the 30s or higher. So of course you can imagine that doctors just think we sensitive girls are winging for no real reason.)

    The critical measurement is the one that they don't bother doing - your free T3.

    No-one who hasn't been through it can imagine what the fatigue of an underactive thyroid is like. And they all assume that your weight gain is due to laziness and overeating.

  • Out of interest my friend in Turkey buys a product over the counter for her thyroid it is called Levotirion T4 ( pharmaceutical name Levothyroxine Sodium 100mcg/tab) manufaturer Abdi Ibrahim

    Is this what is prescribed here?

  • Yes, it is.

  • Well would you blow me down with a wet rag!!!!!

  • These are recommended labs and if you put Thyroiduk's code number you get a small discount as do they.

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

  • Gwhere domu find the code number?

  • This is one of the labs and you will see the Code is TUK10. The other labs must have one on their link :)

  • Hi, my TSH was 9.5 then went within normal range. My TPO is high but, I have been told you can live with that. I too have been told they think it is CFS. I feel terrible everyday and have done for 2 years since this all started. I am still under an Endo which I see again in March. I just wish someone would give me something to make me feel normal again. I am so tired of feeling tired

  • Dr lowe. ( unfortunately, the late Dr lowe). Was one of the docs who belived that CfS is caused through lack of thyroid hormones, specifically t3 or liothyronine. The levothyroxine has to convert into t3 to be of use. once the doctors stopped medicating people by symptoms and started relying on the tsh test, a whole plethora of previouly unknown, but vague illnesses appeared. cfs appears to be one of these.... There is no definative cause or cure...... N

    What levels are your free t3 and free t4?

    G

  • Unbelievable

  • I would feel absolutely dire with those blood results. Seriously. I wouldn't be able to get out of bed. I had a FT4 of 12 for donkeys years which was right at the bottom of the range and kept being told that I was fine because my FT4 was "in range" 12-22.

    I literally couldn't get out of bed to feed myself so the symptoms you're having are very real. My TSH was also in the region of 3.

  • As long as its not me being a wimp... I feel like death on a plate but i am a single mum of 5 and 3 of them are autistic...added on to that i help look after elderly parents my dad has bowel cancer and my mum who lives with him as the middle stages of alzeimers...so there is just no way i can give in to this whose going to take over?... My family members have absolutely no idea how i feel because up to now i have never been ill therfore why would i possibly be ill now...it seems everyone else is allowed to be ill but not ME...and that is seriously getting to me now too!

  • Reading about your circumstances KGeorge you may want to read about 'adrenal fatigue' and how to treat that. You sound as if you are under constant stress and unless any issues with adrenals are addressed then I have read that it maybe more difficult t find a balance with levothyroxine. I am being treated for hypothyroidism but know things are not right yet. It is early days but I believe that my adrenal glands have been compromised and need some care before I can get real benefit from my levo. I'm not medically trained in the least but seem to have had to do do a lot of my own research due to GP's either not recognising adrenal fatigue or like you living with low levels but always being in range. Worth a read and to be mindful of.

  • Very sound advise i am also hoping that now i have had a refferal the endo will discuss this too after all it is his neck of the woods so to speak...what are you doing to address the issue of adrenal fatigue?

  • I have just completed a saliva 'Adrenal Stress Profile' and sent off to Genova labs who I found, and who were discounted, via Thyroid UK site. Waiting for the test results and hoping some kind person on here can help with their interpretation. I have told my GP that I have done this and will take results to her too. There was an article in Harmony Thyroid UK site a few months back (you can order back editions) about how too much cortisol can lead to production of Reverse T3 which gives Hyperthyroidsm symptoms and how too low cortisol causes problems too - so for levo to operate at its best it the adrenals need to be addressed. My old GP told me they would not treat until I was at either end of the spectrum ie Addison's Disease or Cushings disease 😟! So basically like hyperthyroidism you have to be really ill to get help and meantime ... the NHS will treat all the symptoms you present by prescribing Pharmaceutical drugs which may cause further side effects and so the cycle goes on. I am reading a book at the moment called ADRENAL FATIGUE, The 21st Century Stress Syndrome by James L Wilson and hope to get some sound dietary, supplementary advice from it. I have posted these you tube video links on the fibromyalgia site previously re Magnesium and B12 Deficiency. Both were enlightening to me and are definitely worth a watch.

    Jax💕

  • Dyes funnily enough i have watched those you tube videos also as my initial though was i had B12 deficiency it was only after posing my blood results on a B12D site that others pointed out my thyroid results wer the problem!

  • I supplement b12 also. The level you posted is more than likely the serum level which floats in your bloodstream and not the intracrllular reading which is required. You can't overdose on b12 as its water soluble so I wouldn't ignore either. The pernicious anaemia society has a good checklist of symptoms for you to check. Seems they are all interconnected and need each other to operate effectively.

  • Yes like you i too looked this up...not being fobbed off with " normal" by the gp i am on day 4 of an iron suppliment called feroglobin...next its V b 12 can u reccomend a good one? Heard selenium an essential too

  • GP agreed to give me 5 loading doses given symptoms so have done that but to wait 3 months for next shot. Taking Methylcobalamin b12 as its apparently easier absorbed. Just melts under the tongue. I have ordered a nasal spray for next time though from dr myhills site so will give it a try. I'm at the stage I will try anything to feel better albeit I think that's where we Iall are on this site!! Good luck J 💕

  • A ha ...never thought of her site! Thankyou...the more i research the less i trust doctors! I have suvived 48 years without the need of medication am totally gutted i feel this way...its dire!

  • I have found a fantastic GP who is open minded and will help within the constrictions of the GMC, so my faith is being restored. Advances in medicine I fear are not being taught at grass roots and I have found some GPs to dismiss what they don't know as unreal or psychosomatic symptoms which is sad for the suffering patient. It takes a good person to say 'I don't know but I'm willing to learn'!! ...unfortunately the big Pharmaceutical companies most certainly pull the strings. Take Care 😊

  • Joesmum, same results as mine! Felt like death mildly warmed up for a decade of being told I was 'depressed' or had CFS, then fibromyalgia. I finally got treatment because of insisting on a endo referral... took months, but was positive for antibodies. Now on 75mcg of Levo and beginning to get my health back.

  • Thats 3 of us then with same levels now i really do lnow im not imagining it...every morning i get up as soon as i open my eyes the thick foggy head is there...i get out of bed and the tiredness decends like an atom bomb and i think when is it bedtime again? Had a few dizzy spells today too anyone relate to that?

  • I was at the point during which every waking moment I was yearning for my bed! It didn't matter how much sleep I got... sometimes 18 hours out of every 24.

    I had muscle, joint and nerve pain. Migraines, tinnitus, dizzy spells... Had high blood pressure and high cholesterol that didn't respond to medications. In short, I was an absolute mess.

  • I have had more support here than i have ever had thankyou so much everyone xx

  • You are certainly not being a wimp and you have such a lot on your plate.

    Is there any way that you could see a different GP and ask for a trial of Levothyroxine? Your FT4 is right at the bottom of the range which suggests your FT3 will be low too.

    I can't imagine how you are coping feeling so ill.

    Even if they just give you 25mcgs to see if that makes a difference.x

  • This is actually a really good idea and i think i will take that advice and phone the surgery in the morning and see another doctor in the practice!

  • Did indeed phone surgery, usual story cant get in to see the doctor but down for a telephone consultation tomorrow morning it is the same doc that ordered bloods so i will be asking for a trial of Levo and bloods for T3 and antibodies

  • Just looked at my lab results...serum folate 7.6ug

    and serum ferritin 27ug

    Again was told this is NORMAL

    B12 563

    Have started supplimenting with "Feroglobin capsules" im on day 3

  • I believe you are supposed to be in the top quadrant of ranges for b12, d3, ferritin and folate for thyroid to operate optimally x

  • Me too so thought i would try supplimenting as the GP doesnt seem that bothered!

  • Ferritin is best mid-range. Since iron is poisonous in overdose it is vital to avoid over-treating.

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