Swollen thyroid, normal TSH, Hypo Symptoms

Hi all,

This is my first post. I have been experiencing hypo symptoms for over two years now and in that time I have had two TSH tests which have come back within normal range at 3.09 and3.13 respectively. I went to the doctors yesterday to basically plead for a referral because the joint and muscle plain and fatigue are really getting me down. My doctor looked at me like I was crazy and wasn't willing to refer me. He then did a manual thyroid exam and said it was slightly enlarged and therefore he will put me forward for an antibody blood test. Is there a chance the test could come back within reference range? Will I be treated for hypothyroidism if it's comes back as high? My doctor mentioned steroids to kill of my thyroid antibodies but that scares me because of further weight gain! 😓 Please help! Thank you.

16 Replies

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  • Your TSH is in range, but that doesn't mean it's 'normal'. In fact, there's no such thing as 'normal'. However, a TSH of someone with absolutely no thyroid problems, would be in the region of 1. So, your thyroid is struggling, and your TSH is high enough to cause symptoms. The problem is, the ranges, which cut off at a stupidly high level. But, doctors don't understand ranges, anymore then they understand symptoms - or thyroid itself, come to that.

    As to your antibodies, all I can say is that one negative test does not prove you do not have Hashi's, because antibodies fluctuate. And, the chances are that you will have the test during a time when they're low. What's more, there are two antibody tests, and the NHS, in all its wisdom, will only do one of them. So, whilst it's good to have the test, don't count too much on it getting your treatment.

    Also, your doctor is a bit of a wally, because steroids will not lower antibodies. What might lower them is a gluten-free diet and taking selenium, but cross that bridge when you come to it.

    But, getting back to your TSH... What time of day did you have the test? If you want your TSH to be as high as possible, you should have it early in the morning - before 9.0 am - and fast over-night. TSH drops throughout the day, and is lowest after eating. So, beg, cajole and bully him - say you've been feeling even worse, lately - to do another TSH at the same time as the antibodies, and make sure you get the earliest appointment and have breakfast after the test. :)

  • Thank you for your reply. My doctor has told me he will only test for TPO and said if it's negative then he won't refer me. He also said it can't be hashi's because I would have experienced underactive symptoms first until my thyroid finally burns out and I start to get underactive symptoms.

    My fear with the steroids comment was the additional weight gain I would have from the steroids possibly causing further complications and not addressing the hypo symptoms.

    My last TSH test I had on an empty stomach at 08:35 in the morning. Given my symptoms I expected it to be much higher.

    Regards

  • Well, that's what they all say - over-active symptoms followed by under. But, the over-active symptoms could have been so mild and of such a short duration, that - as you didn't know what you were looking for - you might not have noticed them. And your thyroid does, most definitely not, have to burn out before you start feeling hypo symptoms. Just a slight alteration of the FT3 could do that. What is more, the antibodies themselves can cause symptoms. Although doctors deny it. So, all in all, your doctor does not know as much about thyroid as he thinks he does.

    Yes, I understand about the fear of weight-gain. But there's absolutely no point in putting you on steroids because they will not lower the antibodies.

    The thing that patients know and doctors deny is that the TSH rarely reflects the way you feel, thyroid status or intensity of symptoms. It is, in fact, a very bad test, and should not be so heavily relied on. Even the man that invented it said that it was never intended to stand alone, but should be used in conjunction with FT4 and FT3 for both diagnosis and dosing. But that's another thing that doctors deny.

  • Thank you again for your message. Yes that's possibly quite true as my weight and energy levels have always had a mind of their own! I just really hope that my antibodies are out of reference so that I will get reffered to an endo! Only a couple of weeks to wait to find out!

  • Ok, but remember, one negative does not rule out Hashi's. Don't let your doctor tell you otherwise! :)

  • Well I may pay for a full thyroid screening privatelyand then take that and prod of my symptoms to another doctor for a second opinion.

  • That sounds like a very good idea! :)

  • I know you are troubled but I am as well if your doctor mentioned prescribing steroids to "to kill of my thyroid antibodies".

    The problem is, if in the UK, that doctors have been told not to prescribe levothyroxine until TSH reaches 10, whereas in other parts of the world they will prescribe if TSH is 3+.

    If you have thyroid antibodies he should have prescribed levothyroxine and if you email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse Online article and tell GP you are taking advice of an NHS forum about dysfunctions of the thyroid gland. I think it's question 6 that states if antibodies present we should be prescribed hormones.

    Go to GP and ask for a Full Thyroid Function test which is TSH, T4, T3, Free T3, Free T4 and thyroid antibodies. Also Vitamin B12, Vit D, iron, ferritin and folate.

    The test should be the very earliest possible and fasting (you can drink water) and if you were on thyroid hormones you'd leave 24 hours between the last dose and the test and take afterwards. Your doctor is ignoring clinical symptoms for the reason he knews few. You can give him a copy of the following.

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

  • Thank you for your reply. My doctor only discussed budgets with me and refused to even take me seriously until he felt my thyroid. Then he reluctantly sent me for antibody screening. That isn't until Friday so I've got no idea what the outcome will be but he outright said that if it's negative then he won't refer me or treat me. He said in some situations you could be prescribed T3 hormones but and I quote "they cost the NHS £150 a month and they're questionable as to whether they actually work". Obviously insinuating a placebo effect.

    He measured my vitamin levels when he last measured my TSH and that was all normal.

    Thank you for the info on pulse and the email. I will certainly look into it. Unfortunately it won't hold sway with my doctor as he doesn't believe that there is anything wrong with me and is concerned with budgets only.

    Regards

  • We have to be pro-active as it's our body and our hormones. Get a print-out and it may cost you a nominal sum of your latest results. Put them on a new post and members will respond.

    Levothyroxine is the hormone of choice in the NHS and many do o.k. on it and have no further symptoms. Others do have remaining symptoms (which should be alleviated by an optimum of hormone) but the doctor tells them its nothing to do with the thyroid gland and prescribes other medications for the 'pain', 'sore muscles' 'insomnia' 'antidepressants' being uanware that all of these (and more) are due to low thyroid hormones.

    I take T3 only and believe me it is not a placebo affect. I am now well but was very unwell on levo (not everyone is).

    I remained undiagnosed despite paying to see specialists (not Endocrinology) as at that time I was completely unaware about the thyroid gland. If you click on my name you can read my profile.

    I have recovered thanks to Thyroiduk.org.uk before their was a healthunlocked forum.

    This statement your GP made just shows his ignorance:-

    'He also said it can't be hashi's because I would have experienced underactive symptoms first'

    and it is completely untrue. They are very badly trained in dysfunctions of the thyroid gland, are unaware of any clinical symptoms and palm the patient off with anything else to keep them quite and so it continues until you are well out of range and suffering.

  • Thank you again for your help and advice. I asked for a printout of my results as soon as the dr told methey were normal because I just didn't believe it.

    I will wait to see what comes back from the antibody test and maybe go private if necessary. I'm so frustrated with the doc! They will just wait until I'm chronic to treat when they could have causght it so much earlier!

  • If your antibody test comes back positive he should prescribe levo but some don't as they have no idea that they should.

    Go to the surgery and say that from now on you want a copy of your blood test results with the ranges. You may have to pay a small sum for ink paper but we have a right by law to get copies so request yours again.

    If your GP doesn't want to give you the treatment you deserve, you will have to go it alone with the help of members. I hope he will be reasonable but why should you have to tell a doctor how to treat you. Its ridiculous.

  • There are two sorts of thyroid antibodies- TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin) BOTH need checking, if either, or both are high this means autoimmune thyroid (Hashimoto's) the most common cause in UK of being hypo.

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

    ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. Some surgeries make nominal charge for printing out.

    Alternatively you can now ask for online access to your own medical records. Though not all surgeries can do this yet, or may not have blood test results available yet online. (Saves hassle of getting print out from recepetionist!)

    When you get results suggest you make a new post on here and members can offer advice on vitamin levels any vitamin supplements needed

    If you can not get GP to do these tests, then like many of us, you can get them done privately

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

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

    This is an easy to do fingerprick test you do at home, post back and they email results to you couple of days later.

    Usual advice on ALL thyroid tests, (home one or on NHSu) is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

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

    You do not need to have ANY obvious gut issues, to still have poor nutrient absorption or low stomach acid or gluten intolerance

    Best advice is to read as much as you can. Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this. You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.,

    hypothyroidmom.com/92-of-ha...

    vitamindcouncil.org/tag/aut...

    chriskresser.com/the-gluten...

    naturalendocrinesolutions.c...

  • Hi SlowDragon,

    Thank you for your reply. Since this post my TPoAb antibodies have come back as 7.4 IU/ml. I've not been tested for any other antibodies. I suppose this is a good thing but leaves me with no answers.

    Regards

    Lucy

  • Really need to check for TG antibodies too (but NHS won't)

    If you can afford it, get the full thyroid plus eleven test from Blue Horizon - £99

  • Thank you I will do that

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