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Low TSH, Normal T4 - Help!

Posted , 9 users are following.

NikkiMorgan
NikkiMorgan

Hi all, I;m really hoping someone could help clarify some things for me.

I've been Hypothyroid for 14 years, treated with T4 only Levothyroxine, my levels are rarely stable for more than a year and have been treated with anything from 100mcg - 175mcg over this time.

My main problem now is in the past 9 months I've had a real return of many hypo symptoms, my weight has increased, my hair has thinned and fallen out, my skin is dry, my eyebrows have thinned, I'm extremely cold and of course the crippling fatigue. I've had two blood tests during this time, as a result of my first one my Levothyroxine was reduced much to my dismay from 150mcg to 125mcg, despite my protests my GP refused to do anything until I had tried this dose for 4 months and had a further blood test.

My results today were TSH - 0.08, T4 - 13. My GP has said that as my T4 is in range that there is no further action required, I'm feeling really dissapointed as I'm still feeling incredibly hypo and really struggling with the fatigue, I've arrange to speak to my GP tommorow and am hoping he'll agree to test my T3 levels as I'm starting to think their might be a conversion problem, can anyone clarify is this might be a possibilty based on my results or have any advice that I can speak to my GP, any help is really appreciated.

Thanks again, Nikki xx

1 like, 26 replies

26 Replies

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  • anne72835
    anne72835 NikkiMorgan

    Posted

    The practice I am with doesn't do t4 or 3. from what I have read this gives an incomplete picture of what is going on. I don't know if you can insist they do it. There are places who will do tests privately but I haven't used them... YET
  • LAHs
    LAHs NikkiMorgan

    Posted

    Nikki, Anne and Dawn,

    I am not suggesting that you go to private doctors but you can pay to have your blood tests done by an independent lab. Get a complete thyroid panel done, this way you will get your T4, T3, (both free and total) reverse T3, TSH and your antibodies. This will let you know all of the basics of hypo/hyper thyroidism. You can then take these to any doctor on the NHS and discuss the results with him/her. If s/he brushes this off as something s/he is not interested in, you must change docs - your life may depend upon it.

    If you Google "Independent blood diagnostic labs" you should find all which are available in the UK. Many of them, like in the US, will operate from the intenet - I use one of those. You select the test you want and pay them, they send you a purchase order and tell you where the nearest lab is, you just go along to that lab and your results come via e-mail about 3 or 4 days later. If you are really interested I could PM you a good one which operates here in the US but is also global (I can't put thier name on open forum - it would be advertising according to the moderator).

    It is absolutely essential to know all of your numbers, not just TSH and T4 - those tell you very little unless your are very, very hypo, like TSH = >10 then it tells you something.

    If your T3 turns out to be low, then you must move to the next step, what are you deficient in that you are not converting your T4 to T3. If it is not a nutritional deficiency, then you must take T3 as well as T4 - or an NDT. But get your Thyroid panel done first, that is basic.

    • anne72835
      anne72835 LAHs

      Posted

      Thankyou LAHs, suggested more extensive tests T3 and T4 to locum doc who pooh, poohed the need for anything other than TSH! This a young doctor so what hope!  I left thyroxine off for five days ansd then reduced to 100mcg as earlier post.  I also sent for a thyroid support multivitamin so will see how I go.  Provate lab testing is a deffinate possibility as I am determined to sort probs out with or without NHS help.

       

  • barbara98940
    barbara98940 NikkiMorgan

    Posted

    Hi everyone, try registering with tpauk they have a wealth of information to help you understand what is going on and practical info re where to get blood tests etc.
    • anne72835
      anne72835 barbara98940

      Posted

      Hi barbara98940, thanks have done as you suggest but find web site less easy to search (prob me being dim/unused to web site).
    • barbara98940
      barbara98940 anne72835

      Posted

      Try looking under 'treasure chest', 'resources', 'for doctors/patients'. Some popular articles are:

      - You and Your Doctor

      Going into Hospital

      - How to Obtain Access to your Medical Records

      - How to Make a Complaint

      - You and Your Dentist

      - How to make a Living Will

    • barbara98940
      barbara98940

      Posted

      I particularly like the pist

      Hashimotos - why does the body react to its own a ntigens?

      Ehich is talking about TSH levels are fixed but not the underlying cause of why the body attacked the thyroid.

    • Scazzoh
      Scazzoh barbara98940

      Posted

      Hi Barbara, There is some evidence that taking Low Dose Naltrexone (LDN) reduces the level of attack by antibodies. Google LDN. However, I would imagine that trying to get that on the NHS is next to impossible. I mentioned it to an endo recently, and he called it 'faddy'. 
    • barbara98940
      barbara98940 Scazzoh

      Posted

      Hi Scazzoh, I have immediately had a look and am amazed: this sounds really promising. I'm seeing my, very supportive, GP on Wednesday 4th Oct 2015 and will discuss it with him.

      I'm in awe - how do you find out such useful information? Thank you very much, I'll let you know how I get on (if I forget, please prompt me!)

  • betsy66835
    betsy66835 NikkiMorgan

    Posted

    Nikki,

    I had same symptoms:  pain in feet, low energy.  Went to rheumatologist because I want to rule out Rheumatoid Arthritis.  He did complete blood work.  Turns out I got the Parvovirus B19 from a recent vacation trip. Blood test shows the antibody for that virus.  I also had anemia, high white platelet, pain in feet (feels like arthritis), low TSH -- those are symptoms of the infection.  Rheumatologist gave me Meloxicam to reduce inflammation, that work perfectly.  I felt better next day. Going to Endocrinologist in a few weeks to check the low TSH to make sure that's just temporary & part of the virus infection and not something permanent that needs to be treated with Rx adjustment (I also have Hashimoto Thyroiditis & take 75 micrograms Synthroid daily for it).  

    Good luck!

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