Endo says there is nothing she can do?

So last Thursday I saw my endo for the second time after filing a complaint.

We went through the blood test and at 125mcg levo my levels T4 T3 is all fine!

T4 = 22.4 hyper side infact!

TSH = 0.2

T3 = 5.8 i think

all my other levels seem fine...but my symptoms are still there...im thinking of just letting the drug out my system and just starting t3 alone? slowly slowly?

my t4 is usually always in range if you like, its at 12-14-15 while my TSH would shoot up really high

tbh really dont know whats left...thinking of going to see a private doctor?

20 Replies

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  • Anti-bodies ? B12 Folate Ferritin Iron VitD - have they all been tested ? Your results look good so you could be feeling unwell due to other causes.....what are your symptoms ?....

  • These results are very similar to mine, but I felt ill also. My antibodies were 4, never given good explanation by Endo, also all B12 and necessary vits etc good. They do not listen to the symptoms. I have also started on T3 and dropped the Levo, been on it for 18 years and felt terrible.

  • sorry for the short post (as you know some days you just want to give up)...also I posted a long one some time ago.

    My TPO antibodies are 209 so yes hashimotots. Its been 8 years since I was told i'm hypo. but since past 4 years symptoms became bad and past 6 months just worse!

    other levels are ok I've checked, confirmed and also posted them on this site.

    recent symptoms include: Hair loss, thinning hair, brain fog, mental sluggishness, weakness to the extent I can really run and if I do I get super tired! dry mouth...muscle cramps/aches all over especially legs. Reactive hypoglycaemia....(low sugar levels AFTER a meal) but generally I feel I have low sugar levels. Crave salty sugary foods and without out I do tend to become weaker, shake, dizziness. Dizziness and I feel the blood pump to my head on standing..slurred speech....and it goes on LOL....IM NOT a complainer but just listing it as something needs to be done eh? :)

  • Go to wilsonhealth360.com and follow the process. My data was almost identical but I still felt rubbish. Turned out my thyroid wasn't the only problem. A year later feel human. I was thyrotoxic at those levels but the process to change dose etc. is something that needs monitoring. Also the real question is why? If you need help inbox me...

  • Look I had the same dilemma bloods within normal range.I had all the symptons of hyper I had brain,adrenal tumours excluded.It took 5 mths after stopping thyroxine to actually feel better.Now I have sleep apnoea which my Gp believes caused my extreme high Bps night tremors ,sweating,nausea,ringing in ears5kg weight loss.I think not & so does the holistic Gp I am seeing he believes I have Graves & thyroiditis.If this is any help insist they listen to you & do thyroid antibodies & u/s

  • Sorry, Marylyn - u/s?

  • ultra sound

  • Ah- I thought un-serviceable- as I'm ex forces ;)

  • So what did you do? Nearly all my levels seem fine...My cortisol was high once but the endo really made me understand on how it wasn't something that would affect me...I researched it and she does seem correct...HOWEVER... she did not want to buy the 'adrenal fatigue' issue simply saying its a myth lol

  • If you are not converting your synthetic T4 ten all it's doing is building up in your system which in itself is enough to make you feel rubbish. If your thinking if seeing someone privately - Barry Peatfield Durrant us your man. Read his book The Great Thyroid Scandal. I promise you it's the best thing I have ever done. Best if luck xx

  • I agree JaneyG I have read it and just got it out of the library again to re read. Great doctor and he puts it into so simplistic terms, a must for thyroid sufferers.

  • His book is good. T4 only felt def. 'not good' to me.

    The fact Dr.B D-P left GP practice to continue helping people says it all about NHS thyroid policy.[What there is of one]

    They certainly pay a lot of attention to playing to the same [inadequate] rules, though.

  • hmm I had the suspicion that my T4 wasn't being converted....but then my levo was upped to 125mcg daily until it reached a t4=22.5...that's a hyper stage now....so it was only then I finally managed to get a T3 test and that was in the mid t3 range at 5.5 or something.....so firstly, it could be that my t4 converted some but only at a hyper t4 I got a mid t3? and secondly my tsh was crazy high before on no meds but t4 would always be just about in range at 12-14...what could this suggest?

    I stopped the levo, hoping my t4 could return to the 12-14 they are usually at....this would mean my TSH would go back to some 20 or so...then I could see how the T3 is?

  • How long have you been going along with these results? After a very long time I eventually got my results to tsh <0.02 Free T4 23 (12-22) Free T3 5 (?-6) and I still didn't feel any difference. I was still in bed for most of the day and had almost every symptom.

    I had no choice but to stick with it as I had previously tried T3 (under Dr P) and NDT/T3 (under Dr S) I had no choice.

    Then, as I kept a note of symptoms I very slowly saw that I was improving. I would say that it was 5 or 6 months later that I did start to feel better.

    I take 200/225mcgs of purified levothyroxine and 1 grain naturethroid.

    If you think of all of the work that the medication has to do to get trillions of cells up and running again it is not surprising that it takes a while.

    We are all so different, some people in your situation may really benefit from adding a little T3 which you could discuss with the Endo after it has been around 6 months with these blood results maybe.

    Sue

    thyroiduk.org

  • Your Free T3 result is good so I would think that this means that you are converting ok.

    It really is worth you having your B12, vitamin D, ferritin and folate tested.

  • Had those tested Sue, they are fine even the clever people here agreed.

    That being said I think my T3 is only in range now because i'm on a hyper T4 level.

    So I could just be converting some.....so i'm going on no levo atm...then once my t4 reaches the 12-14 it's always at i'll start very very slowly with T3 only...6 months does seem long considering it's been getting worse for the past 6 months! lol

  • You have mentioned that your FT4 is over range and you are hyper - my understanding is that you are only hyper when the FT3 - the ACTIVE hormone is above the range. You do need time as Suze says....also we are all so individual and your blood tests are only a guide.

    With Hashimotos it is important to address the auto-immune aspect of the illness - which starts with inflammation in the gut. so diet is VERY important and we are what we eat.....Have you considered going gluten free ?

    When coming off T4 it just may be advisable to reduce it slowly rather than come off it all at once. Am only repeating advice that was given to me from Dr P's clinic. I too have Hashimotos and various other issues.....hope you soon feel well.

  • In your guys opinion who do you think is the best private doctor for me? I'm hearing Dr P or Dr S one of the two.

    I live in London, what about any one closer that's just as amazing? (I've got the list of private doctors but tbh I just want the best for me wherever)

    Thanks a million people.

    Really really appreciate the advice and support!!!!

  • You can see Dr Peatfield Durrant In Crawley - it's honestly worth the drive ....best money I have ever EVER spent - he us booked up quite far in advance so get on it as soon as you can - I waited 3 months to see him.. Good luck!!

  • How long have you been at these blood levels for? Is it worth waiting?

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