Confused Delux

Confused Delux

Hi everyone, I wanted to ask if anyone has some insight as to why my results are always terrible. I have a combination of hyper and hypo symptoms. I take enough vit d, b12, folate etc all in the healthy range. I was on 75mcg T4 (levo) and 20mcg (T3). My endo reduced the levo to 50mcg and I feel like I am going to die of fatigue more than anything else. It has been about 4 months since this change. Here are the results of private testing that I had done that prompted the doc to reduce the T4. The comments from the doctor from the pathologist room made the follow comment, which my endo dismissed. "The thyroid stimulating hormone (TSH) level is low, which is normally suggestive of hyperthyroidism (overactive thyroid gland). However, the free T4 and T3 levels are also low, which raises the possibility of hypopituitarism (underactive pituitary gland, which would lead to an underactive thyroid gland instead) - further testing would be advisable if this is suspected. In those taking the T3 form of thyroxine (liothyronine), thyroid function tests sometimes yield confusing results. If this applies to you, it is feasible that you are taking insufficient medication. Whatever the scenario, it would be a good idea to discuss these results with your usual doctor at your earliest convenience."

Any thoughts on this would be greatly appreciated.

12 Replies

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  • Christina - did you know that you have autoimmune thyroid disease, aka Hashimoto's, and this is causing you to have hypo and hyper symptoms? Hashi's is where antibodies attack the thyroid and gradually destroy it. The antibodies fluctuate and this causes fluctuations in symptoms and test results.

    Adopting a strict gluten free diet can help reduce the antibodies. Gluten contains gliadin (a protein) which is thought to trigger autoimmune attacks so eliminating gluten can help reduce these attacks.

    Supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

    stopthethyroidmadness.com/h...

    stopthethyroidmadness.com/h...

    hypothyroidmom.com/hashimot...

    thyroiduk.org.uk/tuk/about_...

    Gluten/thyroid connection:

    chriskresser.com/the-gluten...

    I am on a Levo/T3 combination (the T3 is self sourced/self medicated) and when I was tweaking my doses I reduced Levo from 100 to 75mcg and that made my FT4 plummet from around 19 to 12.8 (12-22) and I felt very unwell and fatigued with it at that level. I increased Levo back to 100mcg and my FT4 is now back to just under mid-range, feeling better than on 75mcg but not as good as when my FT4 was higher. Even though it's normal to have low/suppressed TSH and a mid-range FT4 when on combination meds, we're all individual and I appear to need a bit more FT4 to feel a bit better.

    Your results indicate a need for more Levo (in my opinion, which is not that of a medically trained person but from personal experience).

    How did you feel on 75mcg Levo/20mcg T3? Are those results when you were on that dose? If so I think you need to increase Levo to start with, see how you are and maybe even increase T3 if your FT3 remains that low.

    Bear in mind that Hashi's swings can make you feel, and your results look, overmedicated and dose may need to be adjusted temporarily if you feel hyper.

  • Thank you for such a quick reply. I have questioned the endos and doctors about Hashimotos and was told that my thyroid is just sluggish - such a typical answer. I have been off gluten since Dec and have eliminated all processed foods out of my diet. I also take selenium daily. Those results was when I was on 75mcg Levo/20mcg T3. I probably felt my best at 125mcg levo/20mcgT3. I source my T3 from South Africa from my family doctor and every 6 months my mother in law visits us here in the UK and brings it with. October last year my TSH was 0.05 (0.35-4.5) and Free T3 3.8 (3.5-6.5). Nothing else was tested. It was at that point it decreased from 100mcg to 75mcg levo. I could always source levo from South Africa and try and do a trial and error situation. To battle for 10 years now is just crazy - there are moments where I feel like I totally nailing it and other times feels like fatigue will put me 6 feet under...Thank you for the links. I will go and have look at them. Really appreciate your help.

  • TSH was 0.05 (0.35-4.5) and Free T3 3.8 (3.5-6.5).

    If those were your only results, why on earth was Levo reduced??!! Without FT4 the doctor couldn't possibly know if your Levo was at the right level or not! And your FT3 was too low anyway, an increase in T3 would have been beneficial.

    I've turned into a rebel, more so since reading ridiculous accounts of doctor stupidity like this. If you felt your best at 125mcg Levo/20mcg T3 I know what I'd be doing!!!

  • Definitely mad. here are my results that I have kept on an excel spreadsheet. I hope it makes sense.

    TSH (0.35-4.5)T3 (3.5-6.5)T4 (9.0-19.0)Tyroidperoxidase (<34) Thyroglubin (<115)

    (TSH > 0.03) (T4 35.40) Antibodies 215.20 788.90 (05/2007) (no meds)

    (TSH >100) (T4 6.6) (07/2007) (no meds)

    (TSH 0.12) (T3 3.40) (T4 22.60) (03/2014) (125mcg levo)

    (TSH 0.74) (05/2015) (125mcg levo)

    (TSH 0.31) (T3 3.60) (10/2015)(125mcg levo)

    (TSH 0.40) (02/2016 ) (125mcg levo)

    (TSH 1.45) (T3 3.50) (05/2016) (90mcg levo/10mcg T3)

    (TSH 0.03) (T3 11.20) (08/2016) (90mcg levo/30mcg T3)

    (TSH 0.05) (T3 3.80) (10/2016)

    (75mcg levo/20mcg T3)

    (TSH 0.07) (T3 2.80) (03/2017)

    (TSH 0.17) (T3 3.05) (T4 11.7) Antibodies 210.4322 (03/2017)

  • My opinion

    (TSH 0.12) (T3 3.40) (T4 22.60) (03/2014) (125mcg levo) - should have added in T3 here

    (TSH 0.40) (02/2016 ) (125mcg levo)

    (TSH 1.45) (T3 3.50) (05/2016) (90mcg levo/10mcg T3) - seems strange that T3 was added and Levo reduced when no FT4 result

    (TSH 0.03) (T3 11.20) (08/2016) (90mcg levo/30mcg T3) - that could have been a Hashi's 'flare' and a temporary reduction in T3 was called for, without FT4 there was no way of knowing if Levo needed to be reduced

    (TSH 0.05) (T3 3.80) (10/2016)

    (75mcg levo/20mcg T3) - T3 should have been increased as FT3 level had gone right down again after the Hashi's flare was over

    (TSH 0.07) (T3 2.80) (03/2017)

    (TSH 0.17) (T3 3.05) (T4 11.7) Antibodies 210.4322 (03/2017) - both sets of results show the need for increase in both Levo and T3

  • I also think I have a problem converting my T4 to T3 so I have been researching that as well.

  • Yes you have, this result shows it

    (TSH 0.12) (T3 3.40) (T4 22.60) (03/2014) (125mcg levo)

    Good conversion takes place when FT4:FT3 ratio is 4:1 or less, yours was 6.64 : 1

  • You need to research :

    secondary hypothyroidism - a problem with the pituitary

    tertiary hypothyroidism - a problem with the hypothalamus

    Collectively these are known as central hypothyroidism.

    Anyone with one of these conditions produces too little TSH so the thyroid isn't being stimulated enough. As a result Free T4 and Free T3 are low.

    Sadly, doctors often tell patients the above conditions are rare and don't test for them as a result. It's a good way of making a rare disease vanish.

    But I would say you need your pituitary tested for hypopituitarism, as the blurb you got suggested. The pituitary produces several hormones and any of them (or all of them) could be deficient.

    en.wikipedia.org/wiki/Pitui...

    If that comes out okay, then you need your hypothalamus testing.

    On the assumption that you have a problem then your TSH can never be used to monitor your thyroid, and the actual thyroid hormones (Free t4 and Free t3) will need to be measured every time.

    ***

    There is another possibility that I can think of. You have positive antibodies showing that you have Hashimoto's Thyroiditis, otherwise known as autoimmune hypothyroidism. It is the most common form of hypothyroidism in the UK.

    I wrote a long post about Hashi's at this link - the third reply to the post :

    healthunlocked.com/thyroidu...

    If you read that it should help you to understand what it does and how it affects you.

    At the height of a Hashi's flare your Free T4 and Free T3 would be high. As a result your TSH would drop.

    If the Hashi's flare then calmed down your Free T4 and Free t3 would drop. After a while the TSH would rise. But TSH responds more slowly than Free T4 and Free T3, so if the test was done before the TSH had "caught up" then you could have low levels of all three things.

    But if you've had multiple tests with the same pattern of results then I'm more inclined to believe my first explanation of a pituitary or hypothalamus problem.

  • I think you might be right of the trend through and I should look into the pituitary or hypothalamus problem. Got some research to do. Thank you for your input and the links. I am seeing a new endo on the 21st Aug. Hopefully it will be positive.

    Here are the test results I have been recording. Hopefully it makes sense. Trying to add it in as pic wasn't working.

    TESTS & RANGES

    TSH (0.35-4.5)T3 (3.5-6.5)T4 (9.0-19.0)Tyroidperoxidase (<34) Thyroglubin (<115)

    (TSH > 0.03) (T4 35.40) Antibodies 215.20 788.90 (05/2007) (no meds)

    (TSH >100) (T4 6.6) (07/2007) (no meds)

    (TSH 0.12) (T3 3.40) (T4 22.60) (03/2014) (125mcg levo)

    (TSH 0.74) (05/2015) (125mcg levo)

    (TSH 0.31) (T3 3.60) (10/2015)(125mcg levo)

    (TSH 0.40) (02/2016 ) (125mcg levo)

    (TSH 1.45) (T3 3.50) (05/2016) (90mcg levo/10mcg T3)

    (TSH 0.03) (T3 11.20) (08/2016) (90mcg levo/30mcg T3)

    (TSH 0.05) (T3 3.80) (10/2016)

    (75mcg levo/20mcg T3)

    (TSH 0.07) (T3 2.80) (03/2017)

    (TSH 0.17) (T3 3.05) (T4 11.7) Antibodies 210.4322 (03/2017)

  • Your TSH was over 100 in 2007. That rules out central hypothyroidism at that time.

    If something has happened since 2007 to damage your pituitary or hypothalamus - a head injury, whiplash, or Sheehan's Syndrome for example are a few known causes (there are several others) - then you could have central hypothyroidism. But unless that has happened I think you can discard it as a possibility.

    en.wikipedia.org/wiki/Hypop...

    This means that your issue is more likely to be related to your Hashi's that SeasideSusie and I mentioned earlier.

  • I feel your pain. 😓 Some fantastic advice from these 2 people above me 👆🏼.

    If you haven't already done so, could I ask you to read and sign this petition to help stop the withdrawal of T3 from the NHS? If be super grateful.

    change.org/p/itt-campaign-g...

  • Also read this post healthunlocked.com/thyroidu...

    whch explains titrating the T3 dose is so hard when T3 reduces TSH which then reduces Ft4 to Ft3 conversion.

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