I have been having issues maintaining a satisfactory functioning T4 for about 2 years. Having had no joy with assorted GP’s other than to lower my dose when I was displaying symptoms of having too much medication and (reluctantly) increasing the dose when I was ‘dragging’ myself around on too little. I saw the endocrinologist for the 3rd time in March. He thought that there may be an issue with my cortisol levels as I’d been prescribed a steroid nasal spray, theory was incorrect. I now appear to be banging my head against the ‘preverbial brick wall ‘ as he now appears to have overlooked the reason I paid to see him, suggesting that thyroxine may have been over replaced as my TSH is totally suppressed. My TSH has been totally suppressed for years and he knows this. Having been told to return to chat with my family doctor has left me totally frustrated and disheartened as there is little point. I have been in contact with BioCare and am going to try a concoction of vitamins and minerals . My logic tells me that everything happens for a reason and there must therefore be a reason why my T4 doesn’t settle for long enough at a satisfactory level.
Do other people share similar frustrations and does anyone have any theories please.
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GardenerSue
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On your posts of two years and one year ago it was explained about T3 being the most important test and you were given links to the Private Testing companies with the suggested tests. That way you will discover your levels and take things into your own hands and not be at the mercy of Docs who understand so little. Please read through your earlier posts for the advice you need. 😊
Thanks I now need to find my posts of 2 years ago to find links to private blood testing . I have been considering doing this as even using BUPA doesn’t seem to help!
My TSH has been <0.05 ever since I started on thyroid medication! The endo was concerned about this so did a TRH test to measure whether I was producing Thyrotropin (from pituitary. I had no reaction. Had MRI scan to see if I had a tumour in my pituitary (I didn’t). This left everyone scratching their heads and they mention it in every letter with ? against it as they don’t know why. Fast forward 6 years to last year. I had increased T3 to 30mcgs with 100mcgs of Levo and I experienced ordema and our in a stone in a month. Fed up with this I stopped all meds for 10 days and had a blood test which showed TSH had raised to 9.7 during those 10 days. Proving that there is absolutely no issue with the pituitary and that it the fact of being medicated that reduces my TSH to <0.05. I quickly lost the weight and oedema and TSH went back to and remains at <0.05 which is my bodies response to medication. I did titrate up very slowly to get back to my previous medication level. I don’t recommend doing this but it did help me. Hope this helps.
"am going to try a concoction of vitamins and minerals"
That isn't the way to approach supplementing. You need first to test for any deficiencies and insufficiencies, and supplement accordingly.
"Lower my dose when I was displaying symptoms of having too much medication / increasing the dose when I was dragging myself around"
You don't say what symptoms you were experiencing but did they correlate with increased and/or over-range FT4 and FT3 levels - it is common to misinterpret some symptoms as being evidence of under/over-medication. However, if you believe that at times you are over-medicated, the practical answer is not to involve your GP in that, and if necessary make minor adjustments yourself without having your prescription changed, and then there is no re-negotiation needed if you want to return to your original dose because you've continued on the same prescription. However by having comprehensive blood testing carried out privately as has been recommended, you will be able to check symptoms against blood levels to know if you are interpreting them correctly.
"Issues maintaining a satisfactory functioning T4"
I don't really understand what you mean by that. It is known that T4 is not "just" an inactive storage pro-hormone as used to be thought, but if you are referring to its function of converting as needed, to the active T3, you will only know if that is happening satisfactorily by testing your FT3 level along with your FT4 and TSH at the same time. A number of factors can affect conversion rates of course.
My T4 tested by the consultant most recently was 22.7. I have been functioning with high T4 for years agreed by endocrinologist after GP referral approx 12 years ago. My TSH is totally suppressed. I can’t remember what T3 was I’m afraid as it wasn’t brought into the discussion. My T4 started dropping 4 /5 years ago on Levothyroxine 200mcg eventually reaching 16 , 2 .5 years ago. I was experiencing the classic hypo symptoms , dragging myself around, brain fog, exhaustion etc. After a battle with the GP the dose was increased to 225mcg but my T4 shot up to 30 after 6 months and I was experiencing anxiety, insomnia, hyperactivity etc. Naturally the dose was lowered by the GP but by 50mcg to 175mcg. I calmed down but too much resulting in the return of hypo symptoms and a T4 of 17. This has been the pattern. I saw the consultant in March this year (BUPA referral) after experiencing hyper symptoms including anxiety etc as before including a ‘panic attack’. GP’s reaction was to lower my dose which I’d already done so I hoped that seeing the consultant would throw some light on the subject. Initially he thought that a steroid nasal spray I’d been prescribed might have affected my cortisol levels , results showed that it hadn’t. The reduction in Levothyroxine brought about the return of my hypo symptoms including low mood. I wrote to the consultant and received less than helpful suggestions. I’m not sure that he’d read my letter as appeared to be referring to hyper symptoms. I am now taking 175mcg Levothyroxine and am considering taking a private blood test before embarking on a regime of suggested vitamins and minerals. Oddly although very tired I’m not feeling too lousy currently. I need to decide which private blood testing company to use. Interestingly our dog also has Hypothyroidism and the vet appears far more interested and willing to help her!
Oh, that sounds like Hashi's! Nothing to do with your levo dose. Have you had your antibodies tested?
Was this a reply to MaisieGray ? Because she risks not seeing it as you didn't click on the blue 'Reply' button under her comment. I've notified her for you. She's made some very pertinent comments, and I 100% agree with her about your proposal to try a 'concoction of vitamins and minerals'. These 'concoctions' are always a bad idea for a variety of reasons, so I would urge you to do nutrient testing to find out exactly what you need and supplement accordingly, in appropriate doses, and with co-factors.
I have replied I think saying that I am taking a private blood test. Have now ordered one from Medichecks I.e TSH, FT4,FT3 , Anti-TPO , Anti Tg, B12, folate,ferritin,vitamin D
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