tests show breathlessness due to being under medicated :)

Hi everyone, I posted recently to ask for your thoughts on my situation. I have just started on a T4 / T3combination and 8 weeks down the line although improvements in brain fog and constant hunger, my weight and constipation is just as bad and more worryingly i have been struggling to cope with my tennis lessons by being badly out of breath and taking much longer to recover. Originally My endo agreed to try me on T3 based on my symptoms but he made it clear that his aim is to get my TSH up to 1. 3 months ago I was on 100 mcu T4 only and my results were TSH 0.03 (0.3 - 4.94) T4 17 (10 - 19.1) and T3 below range at 3.2 (3.6 - 6.5) So he reduced my T4 to 50 and gave me 20 of T3 and i have been taking this for 8 weeks now. I am not due to see him until 5th march so I asked my GP for an interim test due to the breathlessness and my results are TSH the same at 0.03, T4 now below range at 8.1 and T3 just creeping into range at 3.7. Ranges as before. So my GP called me to say that I am clearly in need of more T4 so she has increased to 75mcu and I have to write to my endo with these results and ask about increasing my T3. MY GP is a star, she is more interested in how I feel and my FT4 and FT3 than my TSH but she can't prescribe T3 sadly. My endo is primarily interested in TSH so I may have a battle to get him to up my T3…..we shall see.

But Im very glad that the breathlessness has an explantion. so onwards and upwards! Thanks for all your previous advice and happy new year everyone! :) May it be the year we all start to feel better :)

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  • ...how are your levels of Ferritin - Folate - Iron - B12 - VitD ? It is your red blood cells that help to transport oxygen to your cells so if your iron etc is low then breathlessness will be one of the symptoms. Am sure you are aware of this - am mentioning it just in case :-)

  • Thanks Marz. All advice welcome. I am booked in for a private blood test on Monday to have all the additional tests done. Didn't dare to ask my Gp :)

  • I am sorry you are having such problems. When we aren't on an optimum of thyroid hormones for us to feel when, and we exercise we reduce T3 further which is the hormone we vitally need to function and breathlessness is a symptoms of insufficient hormones.

    I am glad your GP is willing to up your dose as she obviously is knowledgeable enough to be aware you were undermedicated.

    What a fool your Endocrinologist is when he is insisting on raising(?) your TSH. I would get another Endo. If you email louise.warvill@thyroiduk.org ask for a copy of the Pulse Online article by Dr Toft who was President of the British Thyroid Association. Question 6 will show you how low your TSH can be and maybe your Endo can take notice. Louise will send it after the holidays. Maybe if you also show your GP that Dr Toft says there can be the addition of T3 she may be o.k. with that and prescribe, but of course it depends on the surgery's rules. Also the blood tests when we are taking hormones in addition to levo, will be different (i.e. taking T3 lowers the T4 and increases T3)

    web.archive.org/web/2010103...

  • Thank you Shaws. It is frustrating but at least I feel that there is a reason for me feeling so useless! I guess I am still a long way off being optimised. There is one thing for sure, if my endo says no more T3 then I will self medicate with the tiromel I bought from Turkey. I am not going back to the land of brain fog just so that my TSH will increase xxx

  • It's disappointing when you see a 'qualified' person and dependent and hopeful that they will know best how to at least try to make you well, then the reverse happens. I think you will do fine on the Turkish meds. You will be aware if you take too much and then drop back to the previous dose. This is a link for info and go in particular to question dated November 9, 2005 and July 5, 2000

    web.archive.org/web/2010103...

    This is an excerpt from one of the other answers:

    Conventional endocrinologists' lack of knowledge about T3 results from conduct that is clearly unscientific—that is, overall, they accepted without question mandates passed down to them by old guard thyroid specialists, much as loyal military personnel obediently and unquestioningly comply with orders from higher command. The particular mandate of conventional thyroid specialists I refer to here is this: "The only thyroid hormone preparation a doctor should ever prescribe is T4 (thyroxine)."

  • Low Ferritin is a major cause of breathlessness just like any form of anaemia

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