Borderline underactive thyroid

Hi there

I have been very tired for a long time (years). I recently had Thyroid tested (4 weeks ago) and it came back as TSH 2.9 and T4 7.9. I could not get an appt with my GP for 5 weeks and when he was on holiday another GP received a letter from me outlining a huge amount of symptoms ....49 ! I had included the Thyroid UK checklist. Trial of Levothyroxine was declined. Today a new blood result came back as "normal"... TSH 3.4 and T4 9.9. Asked receptionist to request Thyroid medication as a trial, from my own GP. What can I do if he says no as I feel awful. Any suggestions would be great . Thank you. Best wishes Jane

46 Replies

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  • I'm sorry you're feeling awful. The fact that you have antibodies indicates that you should be given levothyroxine. Email louise.roberts@thyroiduk.org.uk and ask for a copy of Pulse Online (doctor's magazine) and read question 6 and it recommends that if someone has antibodies they should be given a low dose of levothyroxine. Dr Toft was President of the BTA.

    The problem is that the British Thyroid Association's guidelines state not to prescribe until the TSH reaches 10, completely ignoring clinical symptoms and sometimes a TSH will never reach 10.

    In other countries if you have a TSH of around 3 you will be given thyroid hormones. You can see what the following link shows about blood tests.

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

    You have an Autoimmune Thyroid Disease called Hashimoto's and the antibodies attack you thyroid gland. You can help stop or reduce attacks by going gluten-free.

  • Dear Shaws

    Thank you for your message it's very helpful. I did not get tested for antibodies ... as apparently a month ago I did and it was normal. Just TSH and T4 was done. If I went private for blood tests I still can't 'make ' my GP give me Thyroid medication . I also have CKD egfr48. All seems so unfair. I will email Louise now. Thanks again Jane

  • Is your B12 low in range, or ferritin?

  • Hi there

    I have not had that tested . They appear dis-interested in me as I have "normal" results. A nurse was very rude recently when I was trying to explain my symptoms. I have had to initiate this second blood test. Thanks Jane

  • I cannot understand anyone who chooses a medical profession and who are then rude to patients. Ina few months you'll know far more than the nurse with regard to dysfunctions of the thyroid gland :) You will also be able to improve your symptoms.

  • Thank you I will request a B12 test

  • If getting a B12 blood test also ask for Vit D, iron, ferritin and folate. All of these have to be optimum as symptoms can occur too.

  • I had 14 different tests done and all were okay (apparently) but iron a little low. I have to repeat bloods for this which I will do at my new surgery!!after all if I write to them again I will be "struck off". Full blood count normal, liver, folate, rheumatic? Sugar, glucose, crt all normal. TSH 4.25 normal. Ft4 12.1. Normal .(looking for pituitary issues) New symptom today is trembling and shaking a few times from within. Phew!! Are you an Administratir for This site Shaws? You are very kind and helpful . Good night Jane

  • It would be more beneficial if you always start a new question as you will get far more responses and one might be extra good.

    First, always get a print-out of your results, We are entitled by law to have them. Some surgeries charge a nominal sum for paper/ink.

    One huge tip - never take 'o.k' 'normal' or 'fine' with regard to blood tests. We need optimum of everything, except for TSH which should be 1 or lower.

    I am an Administrator but that doesn't mean I know more than many others on this forum but it is a good site and everyone is helpful but thanks for compliment. If we've suffered we don't want others to as most times it is unnecessary but doctors are following guidelines.

    So, remember, the earliest possible time for a blood test and fasting. You can drink water. If on thyroid hormones allow 24 hours between dose and test and take it afterwards.

  • Hi there my B12 was 300 the surgery said today which is "normal".

  • Yes, 300B12 is not bad, but supplement to raise it to 500.

  • Hi Shaws

    Thanks it would appear that when my GP was off and he has been fantastic for many years the doctor and nurse who received my letter were not interested. The nurse was very hostile and refused to discuss the letter. I will be putting in a complaint about her to my own GP. I am being treated as a 'hypochondriac' because of my huge amount of symptoms. I have had breathing problems for a year and a half too. I phoned surgery today to request a trial. How is your thyroid function? Hope it's good. Thanks Jane

  • I am very fortunate in that I am now well. Thanks to Thyroiduk.org.uk and am now informed and I know what hormone suits me. It was a bit of a long journey but I got there in the end :)

    I have tried the full range of alternative and take T3 only now. Your breathing problems are a concern and it's unfortunate those who are supposed to 'know' do not KNOW anything about clinical symtpoms. That's how we used to be diagnosed - clinical symptoms paid attention to and given a trial of Natural Dessicated Thyroid hormones.

    When is your own GP returning? If not soon I'd be tempted to buy my own levo. I wouldn't be left to suffer and of course ignorant people will deem us hypochondriac because we have so many symptoms and we want someone to treat us. We don't pluck symptoms out of the sky.

    thyroiduk.org.uk/tuk/diagno...

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

  • Aw thank you for your support Shaws. My GP returned a few days ago. I will call the surgery this afternoon to find out his decision. (Yes or no to Levo). That's brilliant you are feeling good and treatment is working. I am due to return to the Respiratory Consultant who thought it was "probably" asthma and I have been on inhalors for around 18 mths. But the inhalors have stopped working eek and the Asthma nurse at my GP surgery feels it's Defo not asthma. As Spirometry test has always been within range. Also I have ckd egfr 48. Seeing Renal Consultant in 2 weeks. I will definitely get to the bottom of it all though. I have gout too and I think all these diseases are inter/related. Thank for all info.

  • Hi Shaws

    Just got a call from GP surgery and was advised that I must have come in for recent blood tests on my own rather than being referred from a GP for proper tests re thyroid function including Antibodies ... have not been done?!? I was incredulous. I said that I was recently triaged by Nurse Practitioner and that she ordered the tests. And that the phlebotomist refused to do antibodies when I asked as they were previously normal?!? What a mess!! Told the receptionist that I feel as if "I've been hung out to dry" and had no support from the letter sent and was making a complaint against the nurse who was very rude regarding my symptoms and the letter. I also have red blood spots which the triage nurse thought could be respiratory issue. The great NHS!!!! Thanks for listening 😬

  • Breathing problems or air hunger is assoc with b12 def. Don't supplement till fully tested for this, you may have to pay for a private blood test/s.

  • Two weeks ago I was rushed into hospital with crushing chest pains in addition to thyroid issues. Got all clear re heart , but I am feeling very unsupported re thyroid. My surgery advised me today that T4 range is 9-25 and I am 9.9 so normal !! Beggars belief a country like U.K. Is offering people no support like other countries. I can't imagine what TSH 10 would feel like. I can hardly keep my eyes open at 3.4 lol!! I will get private blood tests done if necessary. Take care

  • I was forever in and out of the A&E with heart. Always got the all=clear but I now know it was the lack of thyroid hormones as I've had no problems since on the right hormones.

    Our heart needs thyroid hormones to work efficiently. My goodness your T4 is at the bottom of the range, they should have done a Free T3 blood test which I expect is at the bottom and that's the reason you cannot function normally.

    Tell them if you have a heart attack it will be down to them, as you will make sure that a Free T3 blood test is taken and if it's too low it will cause serious issues as all our receptor cells cannot

  • Hi Shaws

    That's a shame you were in and out of a&e!! I have been in 3 times regarding chest pain. On 9th Sept when I was in ... they did tests for everything under the sun ... glucose, cholesterol, heart attack etc etc but refused to do Thyroid check saying that's your GP that does that!! To be honest I feel as if I'm waiting for a heart attack and the only way I would get help is if took a cardiac arrest. I collapsedat my surgery a year ago and was nebulised taken to hospital by ambulance. Now my doctor was present and he knows it wasnt made up by still they are being guided by these "normal results". They should now run the full battery of test ASAP and if not it's time for a new surgery but perhaps their thyroid reference range will be the same or worse!! Starting to rant now sorry!! Gives me hope that you are better now Shaw. Well done for getting through it al it must have been a very hard time. Take care Jane

  • Hi Shaw

    I had bloods taken for 14 different tests yesterday. ( after complaining about being 'hung out to dry'..Today the Renal consultant prescribed Levothyroxine and an hour after I handed into surgery, I got a call that the Endo said do not prescribe as they want to look at Pituitary gland. I am worried now. Will be seen within 4 weeks as an urgent referral. So slow!!! TSH 3.4 and T4 9.9. Feel awful.. sore throat ears chest and breathless. BP 160/109 at renal clinic today. Cholesterol 7.9. Hope you are well.

    Jane

  • I am fine, thankfully. Your experience sounds awful and I hope the 4 weeks will pass quickly. You have distressing symptoms which I hope they can resolve. You will be worring until you see the Endo.

  • Hi Shaw

    hope you are well and other folks. I have been assertive at my GP surgery regarding undiagnosed Hypothyroidism. Today I have had a written warning from the surgery I will be "struck off" f I write any more letters from my GP or be late. (2 mins recently). And 2 minutes in the queue. Plus I said an expletive !! When the receptionist said make another appt. not going back to that surgery. Told manager I am being discriminated as I have too many symptoms and if i didn't have to wait 5 weeks for an appt with my GP I wouldn't need to write to him. Also he said I could write to him. New results today : TSH 4.25 Free T4 12.1 all "normal". B12 300 I am unsure about that esult. Iron a little low get bloods redone but will do at new surgery eek!! Folate normal but didn't get result. Oh dear!! What an illness to get diagnosed!! Was prescribed Levothyroxine yesterday by Renal clinic but GP says must see Endo first!! Onwards and upwards!!!! Thanks for all advice 😀

  • thyroiduk.org.uk/tuk/testin...

    You only need to read the first page of this link:-

    web.archive.org/web/2010112...

    Unfortunately doctors have to following the guidelines which state 'not to be diagnosed until the TSH reaches 10'. Other countries diagnose if TSH is slightly above 3. A huge difference and very sick people because symptoms aren't recognised.

  • Hi Shaw

    Thank you for these sites. The good thing is the Renal consultant said above 2.5 is not good phew!! My surgery is 0-6 for TSH. My current levels have gone from 2.9 to 3.4 to 4.25 in 4/5 weeks so if I carry on I will be at 10 lol!! Feeling very bad with chest pain nearly all the time . Wouldn't go to a&e unless I collapsed as no point!! Thanks Tcare.

  • It's quite scary when we're having symptoms and we expect the doctors to know what's causing them - it's not good we have to research for our illness to try to give it a 'name' and I feel sorry you're having chest pains. I think you should go to the A&E and hope they give you an ECG. Just say you have a very bad chest pain and let them give you a diagnosis.

  • Hi chest is ok now thanks. It wasn't crushing pain just discomfort most of the time and as I had the treadmill test recently and appeared to manage well. I can only assume my heart is ok, not returning to my surgery. Will register with one closer to home tomorrow. Just been educating myself on the B12 deficiency website. Gosh there are some scary letters there that hospitals have written to patients and all along it was their B12 deficient. It seems to closely resemble hypothyroid symptoms. Having major kidney surgery 20 years ago was easier to deal with than the hostility you get for trying to get listened tore thyroids and vitamins. I told the practice manager today I was being discriminated against for having too many symptoms. Oh well!! Time for a change and if absolutely necessary my family have said they wd go private for me. Goodnight and thank you again. It's great people on here are sharing their knowledge and experience with others.

  • I, too, had similar symptoms and most unpleasant as you have. We're taking tablets and are stumped as you expect to feel better instead you feel far worse. With a bit of luck you will get their and I hope it's soon.

  • Meant to say renal doc said I do not have much "good" cholesterol and 7.9 for other bad cholesterol was too high , but he wanted to treat my sub-clinical hypothyroidism first. Let's hope the endo feels the same way. Should get seen within 2/3 weeks. Thank you I had a good cry today and I got rid of a lot of stress. Night .

  • Hi so sorry to hear how unwell you are... my GP told me that I had subclinical hypothyroidism and said he would re test me 4 weeks later. I have felt ill for years! I got my second results from his locum doctor who put me on Levothyroxine as he said I would feel better. He started me on 50mcg and told me to be re tested in 8 weeks. I booked in for my following blood test and when my normal Doctor called with my results he said he would never have put me on the Levo and was annoyed the locum had! fast forward 1 year and many countless tears over my doctor being rude and calling me a hypochondriac. He refered me to my local NHS Endo who knew of my doctor and told me that I was not a hypochondriac and I'm now on 100mcg and a small amount of T3.... I have now left my doctor and moved to another surgery... my advise is to move surgery if possible or try and get referred to an Endo! We have to fight for our health as GPs have no idea!

  • Hi Lindsay

    Thank you for your support. Your story sounds similar to mine. I seem to get a new symptom every day is quite scary . If my GP does not give me a trial Levo I will consider new GP. I have to phone surgery today for decision. Tomorrow is a family reunion which has taken years to get us all free at same time and I'm too tired to go.'i'm only 50 but feel 85!!! I have constant dry throat 2 black toenails arthritis in feet and hands and sore throats and ears and cough. Chest discomfort and headaches. sorry for going on!!! Hope you are doing better on your new treatments . Thank you very much for your reply. Xx

  • Try and remain positive. If your Doctor does not listen then move surgery. You could always pay to see a private Endo and If you ask on here for advice Someone will send you a Private message with some good Endo names... just don't give up

  • Hi, I don't know what your diet is like but you may be able to address some of your symptoms by changing how you eat. I have improved mine no end by mostly following a low carb high fat diet, eating fresh rather than processed, not too much fruit and avoid bread, wheat products, potato and rice. It sounds harsh but there's so much you can eat, eggs, meat, fish and vegetables along with cheeses. Might be worth a try if nothing else is working.

  • Yes my diet could be much better that is my next goal. Thank you very much x

  • Life-giving hormones have to be at an optimum before you do anything else.

  • Yes!!! No wonder people are having to resort to self-medicating and private blood tests when they are blatantly suffering unnecessarily. Must be about money saving!! Grr

  • No, it is just ignorance and I've just responded in another thread copying some info from the AAE

    Excerpt:

    Recently, the American Association of Clinical Endocrinologists (AACE) and the National Academy of Clinical Biochemstry decided that the range of TSH values indicating normal thyroid function is narrower than they formerly believed. The

    AACE has decided that 0.3-to-3.0 is the new reference range. According to this new range, if a patient’s TSH level is above the upper limit, the doctor should diagnose hypothyroidism. As a result, when a patient’s TSH is perhaps 2.8 or so, I (GH-L) might consider it borderline. Today, both of us would consider a TSH of 5.7 clearly high, not borderline.

    We want to emphasize that decisions based on the results of lab thyroid test results are fallible.

    [1,pp.794-798,824826][404][405] The tests aren’t

    especially reliable: test results on one day may be markedly different from those on the next day or the following week.

    web.archive.org/web/2010112...

  • Wow that's reassuring thank goodness for this site!!! You have done a lot of research on this subject. Thank you for all of this 👍

  • Just read Dr Tofts symptoms of hypothyroid and I have all of them. Good article I will print it off and refer back to these posts as I find a solution to all of this. Thanks again it's very reassuring that I am not imaging these symptoms 👍

  • Hi Shaw

    Hope you are well. Just an update from this morning. The GP finally phoned and said he's had time to read my letter of 22/9. He contacted his colleague in Endo who says DO NOT give Levothyroxine as it can be dangerous cause heart rhythms etc if you do not need it. Hes referred me to endo now. Told him that he has been a great GP to me for 20 years but I have been 'hung out dry' when he's not there. Told him about nurse being very rude and uninterested. Told him my heart could be under a lot of strain etc. Also said uk reference ranges are very wide compared to USA etc and if a person feels very ill then surely this is just as important as a blood tests . oh well things are moving in the right direction. Thanks again it has helped me a lot to get advice and given me a confidence I can get things sorted.

  • Thanks started a new post didn't realise I could do that doh!!

  • Hi Lydsay

    Good advice thank you. To confirm my TSH is 3.4 and T4 9.9. Along with lots of symptoms would anyone agree it is reasonable to request a trial of Levo, which I did yesterday? Any thoughts would be greatly appreciated. Thanks for your time x

  • Hi Jane,

    My blood tests are "normal" so I did the Barnes basal body temperature test then started to self-medicate with NDT last year. I added T3 this year. My GP thought I was going to be wasting my money, but had to agree on the improvements to my health. He supported me re my concerns of being struck off when I saw my latest endocronologist.

    I'm sure you'll get plenty of support from the community here, if you choose to take that route.

    Mel

  • Considering any route at this point!! Haha. Well done diagnosing your own condition Levetette!! Great youhad the confidence to do that . Brilliant your GP stood by you when you self/medicated. I think my surgery are fed up with me as I have so many ailments and appointments. It's so unfair the NHS have such off the mark guidelines compared to the US!! Thank you have a lovely day Jane x

  • Hi I did much the same as above. I had every heart test available at the hospital and my dr still thought it was my heart to blame when my heart rate went down to the 40s and I was out of breath and dizzy. I was told my TSH at 7 .2 was border line three yrs before that and wasted so much time. I became very ill then self diagnosed hypo. The GP started me on t4 when the TSH was 12.9 and became worse over the next months until I told the dr that I had to stop taking it. Then I Saw Dr Peatfield who said I was toxic from too much T 4. I started on t3 and sorted out my supplements and after six mths am feeling much better. My GP hasn't supported me and I have got my t3 from Greece. Take your temperature every am as above and heart rate and make a diary so you have some evidence of low metabolism. I hope you get medicated before you get too ill.

  • Hi Sue

    Sorry you had so much trouble getting your issues treated. Glad you are getting better. I will take my temperature etc. Take care Jane x

  • What a shame you had to go through years of illness and wait until TSH was soo high. Mine is 4.2 and I feel horrendous. Seeing endo soon. Apparently urgent referrals are within 4 weeks with NHS. I am taking on board all the very good advice including temperatures and now changing my surgery tomorrow. Take care hope you are well .😀

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