TSH level came back at 1.9

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Hi all, I'm new here. Saw my Rheumatologist yesterday, who gave me my TSH result that my gp did last week and it came in at 1.9. He said it was absolutely fine as it can be 5.5 and still within normal range. Was told that I am worrying needlessly and to accept I have a normal thyroid. I already have an autoimmune disease as in severe form of Rheumatoid arthritis, and my mother, when I was very young had myxoedema and was left undiagnosed for many years, in fact she was sectioned at one time before finally going into a myxoedema coma and only then being diagnosed. My great grandmother and grandfather both had an underactive thyroid. Am I worrying needlessly? is it all in my head? I asked for further tests as in antibodies and was refused and told I may want to think about a depression test!!!

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  • Posted

    Hi Sarah

    1.9 is well within normal limits with the one caviat that I have been told that everyone has different thyroid funciton so 'normal' can only be confirmed if a test was done before symptoms appeared, which is almost never the case.

    The symptom list for hypothyroidism is so long, there are lots of things that can overlap with it, depression is just one of them.  If you don't feel depressed don't listen to that suggestion.

    Sorry to hear you have RA, what a horrible illness to have, it must be very hard for you.  I hope you can get more help soon.

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    • Posted

      Thank you for replying so quickly. I told him i was offended by the depression quip confused. I was under the impression that 2 is the number that puts you in under active range and that 5.5 is outdated. I asked him why i still had the signs and symptoms if it is all so normal and as usual my rheumatoid was used. It was a fasting blood as I was tested for diabetes at the same time and that came back as normal too although it was 6.8. Yes, dwynwyn the Rheumatoid is enough to contend with, but I'm seriously thinking of getting tested privately and just pay for it. That way I'll get a print out with all required info. A phlebotomist told me that to get T1,2,3,4 and antibodies tested in the NHS, you have to be outwith normal range. You just feel that you have to fight for everything now and do your own research, but hey many are so much worse off than me. Hope you are well dwynwyn xx
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  • Posted

    Hello Sarah,  With your family history and already having an autoimmune disease

    can see why you would be concerned.  Whilst your TSH 1.9 seems fine and I would question if 5.5 would still be in the normal range as I know some doctors/labs have changed the range to upper limit of around 3 with optimum level 1-2 which you are.  That said there are folk out there all within normal range but still having symptoms, or those on levothyroxine but under treated for them.

    You don't mention if you have symptoms and you will have enough to deal with 

    with your RA.  It is bad that they mention depression and fob you off. Can you ask to be referred to a endicrinologist (not right spelling) for a full thyroid function test.

    You could mention about your family history and especially your mums history.

    I hope you can get some help don't let them fob you off until you afre fully satisfied with what they say.  

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    • Posted

      Hi libralady13, my hubby is a libran toobiggrin. Thank you for your reply. He knows my family history and obviously knows i already have an autoimmune disease. Yes I have the symptoms, even lost the outside of my eyebrows, hoarse voice, swelling in my neck, can't stand heat, skin and hair all dry and hair falling out and fatigue. There is no chance of seeing an endocrinologist as he made it clear that i had to accept what he said. With having the rheumatoid for 17 years, you find that you become in tune with your own body and just know when something is wrong or when something new comes along, as you all probably experience yourselves. When you get an illness/disease, I truly believe we become the expert over time. I will plod on and get my answers one way or another, but so glad to hear replies from people who know what they are talking about. Thank you xx
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  • Posted

    Hi Sarah.  Started one message and lost it all.  So will try again.  I do feel for you.

    I get angry the way some doctors treat their patients.  You do seem to have many of the symptoms of a thyroid problem.  I was very lucky when I was diagnosed over 20 years ago (now 66) my doctor knew that my mum had low thyroid and my son being diabetic, so tested my after I complained of fatigue

    feeling the cold and aches and pains.  He could so have easily put it down to oncoming menopause, having lost my mum to cancer and having a job,home and

    husband and 3 teenagers to look after.  I think that sometimes us ladies have to fight more and not be fobbed off as hormonal etc. I notice you said that your blood sugar ws 6.8 that seems high if it was a fasting test or at least border line.  Maybe you are right and will have to get a private complete thyroid function test done, but you should not have to.  Have you looked at Thyroid UK. You might find something here.  I could go on and on I think it is dismissed as a unimportant condition just take your tablets and you will be fine.  Might be for some but it is not as simple as that.  Sorry to go on.  Hope you can find a way to get some help.  As you say always someone worse off.  Take care, keep in touch on the forum.

    Carol

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    • Posted

      Hi Carol, I'm 59 so he couldn't use menopause as excuse haha. I agree that woman do have a harder time due to our "hormones", it's a cop out though as the ratio for autoimmune diseases is I believe 75% women and 25% men, although I think on the whole men get them more severe. They are life threatening illnesses at the end of the day so should be taken seriously.

      Twenty years ago when you were diagnosed, seems like an entirely different age with different ways of doing things with doctors thinking for themselves , now it's all high tech and become very impersonal and of course all the cuts within the NHS. When my mum was suffering it was 1959/60, but her symptoms were so severe she was sectioned as they obviously thought she was psychotic, when in actual fact it was all down to not being diagnosed. When she was eventually put on Thyroxine, she did make a recovery of sorts, but ended up having a stroke.  It was my granddad who secretly gave her thyroxine as he was sure it was her thyroid and only then did the doctors do something.

      I just need to make sure, then I can move on, as I have enough to contend with the rheumatoid. You have had a lot to put up with too and I think we ladies do try to keep everything "normal" for our families and sometimes that comes with a price, but at least we make choices.

      It's been lovely talking to you Carol, and yes I will keep in touch if you don't mind. I get a bit slow on my laptop as I have to use voice recognition as my hands are badly affected, but with my husky voice just now it's struggling to recognise me!!

      I'll go and have a look on Thyroid uk and see what I can get from there, so thanks for the link.

      Take care

      Sarah xx

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  • Posted

    Most importantly how do you feel?  Are you getting symptoms?  Blood tests aren't worth the paper they are written on and I strongly believe it is symptoms that count, doctors have a different view but MUST be dragged to the symptoms point of view if there is to be any decent treatment.
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  • Posted

    TSH! This is all doctors rely on.  Its disgusting.  I, like your mother, spent years being treated for mental health issues till I was almost off my head.  I wish doctors would turn back the clock to before the pharmaceutal industries got involved.  They used to listen to patients then and treat them with Natural Thyroid Hormone accordingly until their symptoms improved.  Levothyroxine is T4 only.  "Normal" functioning thyroids produce T1, T2, T3 and T4.  Whilst we have the ability to convert T4 to T3 there is no guarantee your body is managing this process and they dont test to see if it is.  Getting TSH levels within range is about all they are interested in.  My level tends to sit bearly in range for me to feel ok.  I have been asking to try Natural Thyroid Hormone for some time in my gp practice but get fobbed off so I know how you must feel.  You should definitely push on having antibody tests.  I had to go privately to find out that my myxoedema was autoimmune.  I now also have fibromyalgia.  I hope you have better luck at pressing them for a test.  You should also ask for reverse T3.  A good site for information is Thyroid UK. There is a section on there under 'about the thyroid' which explains the various tests for autoimmune.  I hope this is helpful and wish you all the best.
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    • Posted

      Couldn't agree more especially about the pharmaceutical industries.  I think a lot of it is box ticking that is why so many are on statins etc.  To get back to thyroid It is all about money they surely know how the body works naturally T1,2,3 and 4 and then the conversion problem they know about that as well.  I have read lots of stories from patients about how well they are on natural thyroid hormone proably prescribed privately then the gp won't give it on NHS back to square one. I myself have been hypothyroid for well over 20 years.  My dose has been 125mg of levothyroxine for years and my TSH around 2.8 fine according to the GP although I read that the new range has an upper limit of 3  I have often thought that I might feel better at a lower range. To bring you up to date after a fall which resulted in a wrist fracture I was prescribed VitD3 as I was found to have ostepenia.  Since taking it my TSH had gone down from 1.something in 2013 and this year .98

      My doctor says it is nothing to do with VD3 but I am not so sure. Do you know anything about this?  Unfortunately I have a lot of other medical problems so it is hard to know what sympton is caused by what condition if you know what I mean.  As you say all gp's are interested is that you are in range.  I know from my last TSH that the range the lab uses the upper limit is around 4.  I am in Greater London you would think they would know about new ranges.  All they are interested is that you are in range.  They are frightened of giving you too much even if you still have symptoms.  I did have a gp years ago now retired who was a bit more helpful he was prepared to play around with the dose according to how you felt.   Sorry to have gone on a bit I wish you and all on this forum the all the best.

       

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    • Posted

      I'm sorry to hear that. I don't know about that vitamin but I have to take folic acid 5mg. I was rather put out when my gp suggested my diet wasn't good as I homecook everything (no junk).  I think absorption issues are more to blame from what I read.  It's no fun is it? I'm in Northern Ireland so we are pretty hampered by any new regulations, our health minister and authorities don't have a brain cell between them and are too caught up in their own personal religious agendas to care about real people in the real world.  I have signed the government e-petition to have natural thyroid discussed in parliament. No research goes into thyroid yet it accounts for huge swathes of the population. I too have read how many people do better on natural thyroid but as you say it's all about money. 

      PS I'm libra :-)

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    • Posted

      Hi, To another Libran.  Don't get me started about government and healthcare.  Anyway I have been on to Thyroid UK and signed the E petition.

      All the best 

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  • Posted

    I know this is old... But did you ever get to the bottom of this? 

    I tick many boxes for hypothyroid but have a level of 1.6 so am deemed fine and my symptoms put down to stress. I know stress can do some funky things to the body, but this stress isn't new, everyone has stress, yes I may have a lot right now, but I'm a 36yr old woman and I should feel like this, I wake up bone tired and feel like I am being fobbed off as it being stress. I have 3 youn children to care for and this is not helping.  Can stress cause a horse voice?! I am living in  Spain however so have the lost in translation to deal with too. Though we have found their health service to be good and usually better than the nhs. 

    I'm wondering about private testing for free t3 & t4 & if it's worth it. 

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  • Posted

    I was hyper because of thyroid inflmation my iodine scan came back normal.

    My results were ft3 35 ft4 55 and tsh was .0001

    Doctor told your thyroid levels will normalised in two months

    Antibody test

    Tsi came back negative

    Tpo came 102

    Thyroglobulin came .4

    Now i am feeling cold nausea and loose stool.

    Not well . I dnt know if i am gone into hypo or i have hashimoto

    I have been struggling from 6 years and doctors couldnt diagonose anything for me properly .

    Did endoscopy as well and nothing came up except small Haitus hernia and doctor said its normal

    When i was hyper i didnt have any indigestion problem but reflux problem. Now my last test came normal ft4 1.4 ft3 3.2 tsh .01

    I want to repeat my results again to see if i am hypo. I gained weight back to 56 kg from 51 kg which was droped when i was hyper.

    Doctore says high tpo are normal . Its usual in mist of people.

    I dnt know what to do

    Right now my nausea is bad daily early morning and i burp alot as well.

    Trying some lemon apple cyder vinegar or fennel tea to balance my digestion. Ginger is good for nausea as well. All these remedies i am using to keep going

    Regards

    Youkon

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