Meeting with endo, question re my abnormal T3 reading

Hi Everyone

Had a rather confusing meeting with my NHS endo recently and have been pondering my results.

Have been on 25/50 mcg levo.

Results TSH 5.49 0.35-5

T4 11 7-20

T3 5.5 3.3-5.3

I have lots of unresolved hypo symptoms, am so cold all the time, weight gain, balance issues, awful pain in muscles and joints.

When I told the endo i was thinking of trying NDT she said that I have enough T3 already and I could push myself over the limit.by taking Armour.She had originally talked about putting me on T3 only but changed her mind when she saw my T3 result. She said you have more than enough T3.

Am so wanting to try something that makes me feel better. Would taking NDT push my T3 up too high. I dont understand as all other readings are not brilliant, ie highish tsh and lowish T4. Am really confused now. Any ideas would be welome.

Thank you

19 Replies

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  • The problem with blood tests is, it shows you what you've got, but not what you're doing with it. It could be that for whatever reason, your body is not able to use the T3 it has at a cellular level. In that case, it doesn't matter how much T3 you have, you'll still have hypo symptoms. As to pushing your T3 up 'too' high, what would it matter? You can only be 'hyper' if your body is using more T3 than it needs, not because it's there in your blood.

    So what is the solution? I confess my memory is letting me down here... Have you had your adrenals tested? Although you obviously don't have a conversion problem, fatigued adrenals might have something to do with it. I shall have to think about this one - whilst hoping that in the mean-time somone else might provide the answer!

    Grey x

  • Besides, it's not that much over the upper limit! Some people need it up that high. I do. Not sure it's cause for concern... And the low T4 is probably because you're taking such a low dose. The high TSH would suggest that youre body isn't using the hormone you're giving it... Just thinking 'aloud'...

  • Thanks greygoose for your replies.

    I did not think it was terribly high but the endo warned me off starting the Armour saying that I would simply overdose my system with T3. This scared me somewhat! Have not been able to tolerate anymore that 25/50 mcg levo as have awful headaches with it.

    Am in a bit of a state wondering whether to give the Armour a go.

    Have not had adrenals tested.

    Thanks again

  • Is your Endo doing you a dis-service?

    Dr Lowe who was the editor of ThyroidScience and Fibromyalgia Research wrote to the British Thyroid Association three times without a response from them regarding his Rebuttal sent them about the untruths the state in their guidelines of dessicated thyroid hormones .This is a copy:-

    Dear Dr. Allahabadia,

    I have included below a link to a rebuttal I have written to the British

    Thyroid Association (BTA). The rebuttal concerns the BTA Executive

    Committee's 2007 document on natural desiccated thyroid and levothyroxine.

    After having critically analyzed the Committee's document, I believe it

    constitutes a gross disservice to patients and clinicians who might read

    and be mislead by its unbalanced presentation of evidence and the false

    statements it contains. I feel it is proper to let the BTA know about my

    rebuttal so that its officials can respond, hopefully by correcting the

    misinformation the 2007 document contains. We at Thyroid Science, of

    course, will be happy to publish any statement the BTA decide to make in

    response to the rebuttal.

    thyroidscience.com/Criticis...

    All best wishes,

    Sincerely,

    Dr. John C. Lowe

    Board Certified: American Academy of Pain Management

    Director of Research: Fibromyalgia Research Foundation

    Editor-in-Chief: ThyroidScience.com

    Your TSH appears high for someone on meds and your dose of meds too low - I assume that's why you are feeling so bad. Cursor down to November 28, 2003

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

    Dr Toft's advice (British Thyroid Association) is:-

    6 What is the correct dose of thyroxine and is there any rationale for adding in tri-iodothyronine?

    The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range – 0.2-0.5mU/l.

  • Thanks Shaws for the reply. I was horrified when my endo said that she was happy for me to have a tsh 5.49 whilst on meds. She said it was quite normal. She said that in trying to get it as low as 2 would alter the T3 and mine is at the top level already.

    Am in a real quandary. Would like to try the NDT but am worried about the T3 elelment.

    Just when I think I have it sorted it all goes pear shaped!

  • If you wish you can email Louise.Warvill@ThyroidUK.org and ask for a copy of Dr Toft's article which was in Pulse online and point this out to your Endo.

    This is also on Armour and you will be reassured, I think, when you read Dr Lowe's replies.

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

    I am so much better on dessicated although it isn't Armour. Levo didn't agree with me and I told my GP so and he said the only way to prove that was to stop taking it. As I had been very ill before diagnosis I knew I couldn't do that but when the Endo added some T3 I felt so much better and stopped the levo and my health improved more or less straight away so I didn't take it for 9 weeks but added T4 in again in case the T3 was stopped if blood levels looked strange.

    This is from STTM to Endos/GP's

    And you may ask: where’s the science? My answer to you is simple: if patients had waited on science to tell them what they already know by repeated and shared experience, we’d ALL still be sick. Some research which backs us up is here.

    So, may I respectfully ask that if you consider yourself to be a caring and wise physician, listen listen to your patients, both in your office, on this website, and in more detail in the book. Because if you do, you just might become quite wiser than the average duck… and patients will adore you.

    stopthethyroidmadness.com/m...

  • Thanks shaws

    I wont be going back to that endo.

    Am thinking about going private I cant deal with this anymore. I feel like I am fighting my GP and the Endo just to get some help. I need someone on my side.Have felt so poorly for so long - just want to be 'me' again

    L

  • ThyroidUK has a list of private doctors and it is worthwhile.

    I went private too in the end but I only needed a few appointments and was referred back to GP who wont prescribe, but I get private prescriptions from the Specialist and send a copy of my blood results to him, so when the GP says you are too low, I say 'no' they are fine and also gave him a copy of Dr Toft's Pulse article plus other items. They stick to what they have been told is the way to treat us when we know differently

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

  • Your endo is an idiot. Sorry, but it's true. A tsh of 5.49 is way too high for someone on meds. I would be half dead with a tsh like that! So what does she suggest you do? Stay as you are?

    Grey xxx

  • Yes Greygoose she said to stay as I am.My jaw fell open when she said 5.49 was ok on meds. She asked me why I looked shocked and I told her about my research had said that it should be lower than 2 if poss. She did not agree and said my results were fine on levo and I would be taking a chance adding more T3 in the form of NDT. I am just wondering if the T3 is sort of pooling in my blood and not being used properly.

    Think I am going to have to get to a private doc on this.

    Thanks again

    L

  • Hi :Lizzie - I'm wondering if you are someone who usually has T3 above the range? The ranges are statistical averages and roughly 95% of people will fit into them (if I remember my statistics right), so that means that 5% of people will have values which are normal for them that are outside of the range. Maybe you are one of these?

    I think you should give the Armour a go. Some people never feel well on the synthetic stuff.xx

  • Hi Clarebear

    Thanks for the reply, the endo has really knocked my confidence in making decisions. Am going to go private and will probably go down the NDT route but only when I have asked a very long list of questions.My T3 in May was 3.8 (3.1-6.8) so it has increased on the levo but not helped any of my symptoms.

    Just cant get my head round it increasing while my TSH is highish and T4 low.You would think that some of my symptoms would have eased but I think they are actually worse.

    L x

  • My symptoms didn't improve on levo even though my T3 looked good at 5.8 (3.1-6.8). I feel much better on the Armour with a similar T3 level. I fefinitely think it is worth a go :) xx

  • Don't let doctors knock your confidence. You know yourself better than anyone and must do what makes you feel well. Don't go by tests, go by how you are feeling.

  • Hi ChrysO

    Its so very hard when GP's, Endos and the like almost make you feel like its all in your head. I know I am not well, trying to convince them seems an uphill battle. Have made an app with a private doc, hopefully will get some answers.

    Thanks for your reply.

    L

  • Doctors say it's in your head to avoid responsibility and because they are lazy.

  • I think it needs further investigation, such as, for example, your level of rT3 and the ratio fT3 / rT3.

    You are taking T4 ie Levo but your fT4 is still on the lowish side, backing up the high TSH which is asking for more thyroid hormone. If the doctor had not checked your fT3 we'd have been nomen the wiser and presumably your dose of Levo would have been increased.

    I don't really know what conclusion to reach as your results are indeed somewhat unusual with the fT3 being so high, but mistakes happen - it is a possibility that it is a lab error. It needs double checking.

    Certainly further tests are necessary and this needs looking into in more detail. I hope you find a doctor willing to do so.

    koala

  • Hi Koala

    Thanks for the reply. rT3 is what worries me. They had wanted to increase me to 75mcg, thank goodness I cannot tolerate levo and was unable to take an increase.I have stopped my levo until I can get to the bottom of it.

    Have made an appointment with a doctor from the private doc list so hopefully he can shed some light on it.

  • "none the wiser" is what I wanted to say, my spell checker thought otherwise lol

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