Most recent thyroid tests, what do they mean? My gp says they are fine but they are out of range as far as I can see!

After reading about the importance of t3 I requested my tsh, t 4 and t3 as the fatigue has been horrific recently

My current levothyroxine dose is 125mg daily

Tsh 6.9 (0.20-4.00)

Free t4 8.1 (10-20)

Total t3 1 (0.9-2.5)

I have just completed iv infusions for iron as my ferritin level has been 5 for 3 years and the effect has been amazing in so much that my hair has fallen out and a layer of fatigue has been lifted.

I also suffer from adrenal insufficiency but am improving gradually

i would be grateful of any advice as my doctor says it is Normal....

Many thanks

Me

11 Replies

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  • You might be 'normal' if you did not have hypothyroidism but you are very, very hypo with a TSH of 6.9 and extremely low T4 and T3. No wonder you are feeling awful.

    You are so underdosed. I believe it verges on neglect as he/she can cause you to develop heart or other serious problems.

    Email louise.warvill@thyroiduk.org.uk and ask for a copy of Dr Toft's online article in Pulse. Highlight question 6 and have an emergency appointment with your GP or up your dose yourself by 25mcg and see him as soon as possible. You will see the whereabouts Dr Toft (who was President of The British Thyroid Association) recommends our TSH to be, even suppressed.

  • Not sure what planet your doctor is on if he thinks your figures are normal or whether he would be happy if those were his figures. I'm not surprised you are feeling awful. What does your doctor think the ranges are for - you can feel pretty terrible and be within the range but you are so out of the range it is ridiculous.

    Get yourself a copy of that article and go back and see him, take someone along with you for support if need be.

  • Oh crumbs, I have just burst into tears as I read your responses. I suffer with lupus aswell and many times, doctors just say the fatigue is caused by lupus. In my doctors defence, I am a tricky patient as it appears that if you tweak one area, there is a cascade effect on every other, so I think they prefer to just ignore. I will go back and request an appointment with my endocrinologist who has been looking after my adrenal insufficiency

    Many thanks for telling me I have a right to say that I don't feel well...... It means so much

    Me x

  • Oh goodness, I hate to think I've made you cry.

    I think it can be quite difficult to sit in a surgery and tell a doctor that you feel really awful - well it is for me - especially if you have to be persistent about it. I was brought up to believe that pretty much anything I had wrong with me was 'my imagination' which looking back (I'm 66 now) it was an awful thing to do to your children and it meant that if I ever got so ill that dragged myself to a doctor I was really apologetic and just accepted whatever they said even if I wasn't convinced because deep down I thought mother was right and it probably was my imagination.

    Then one August a couple of years ago I went to a doctor feeling terribly ill, was actually told ' you're needing my holiday', I came out almost in tears with frustration and said to my husband that the doctor clearly thought I was a nutter - I could see it in her face - by November I was in a state of collapse with Graves Disease, that was what I had had all along yet I pretty much just accepted her 'needing a holiday' diagnosis even though I knew it was wrong.

    The good thing for you is that it has been recognised that you have lupus and that you have adrenal insuffiency, so in a way that's good. Could you get your lupus specialist to order the blood tests for you if your doctor won't or even the endocrinologist who has been looking after you, I think it is a very good idea to ask to see him again.

    Good luck with this and hopefully it won't be too long before you are sorted out 😊

  • They were tears of relief, don't worry. Have a renewed determination to be heard!

    Thank you......

  • 😊

  • How was your Adrenal Insufficiency diagnosed? You are very under medicated, but having autoimmune disease can cause fatigue. I may have Secondary Partial Adrenal Insufficency, which is Pituitary. I have not had all the testing yet. It is normal for one med change to change all other hormones, unfortunately. You need a real well trained doctor to monitor all of it and they are very hard to find for sure. Also, total t3 is not going to tell you as much as a free t3.

  • I collapsed just under 2 years ago after having complained about dizziness for around 6 months. I was taken to hospital where they blamed it on my lupus but I knew it was not. I felt at the time of the collapse, as if my entire body was shutting down...my heart was getting slow.

    I pushed for a cortisol test and eventually went privately where it was discovered that my cortisol was 39 at 9am (should be around 300) and rose to 80 after the acth test ( should have gone to 400-600) so my adrenal glands had pretty much shut down.

    It was a long and painful process but my acth test last week showed that my morning level was 216, still out of range but much better ;-)

    The joys of autoimmune diseases

    Hope that you get yourself sorted, be patient and do not be alarmed by perceived personality changes, they do get better as you manage the condition

    Me

  • Hi Chablis, the description of your entire body shutting down really sounded like me, before they discovered my B12 was really low. I am also concerned about my adrenal function, and have been wondering how to go about getting a private test? Did your levels collapse after a prolonged period of stress? Best wishes MarLiz

  • Not that I am aware of, I think I just overworked them until I used up all the reserves. The same happened with my ferritin. It also does not help that I have used steroids to manage my lupus in the past. I think that when you gradually slip into a state if fatigue you are not aware that it is happening and fatigue becomes the norm and you just try to keep going. It is only since having my iron infusion that I have started to feel a little more energetic, in fact good, despite my under active thyroid. Just goes to prove what we all deal with on a day to day basis

    You could always try Genova testing, their saliva test is a very good indication of where your cortisol levels are throughout the day, and if have a feeling that you may get a discount if you mention health unlocked.... Does anyone know if that is true??

    I hope that you feel better soon, feel free to get in touch if you have any other questions

  • Thank you for putting up the cortisol levels Chablis. I have to have a 9am blood test in a couple of weeks and did not know what levels should be. I woke up one night to feed my daughter and found I could not breathe. A locum came out and injected Hydrocortisone, but this was not followed up on and I was just given ADs. This was five months after a sub-total thyroidectomy and not on any treatment. How they thought I could survive on just 9/10th of a thyroid, I don't know! So think, like you, I just used up all my reserves. My iron has always been good, but I haven't had it tested for some time, so will try and follow this up. Glad it has helped you as you seem to have more than your fair share of AU problems. You get the discount for Genova via Thyroid UK and it is a good service. Had a few fainting episodes after this until I was treated with Levothyroxine 19 years later, then all has been well until 4 years ago when they changed Levothyroxine from Goldshield Eltroxin to Mercury Pharma generic Levothyroxine.

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