Moved to stage two of my health plan

After seeing the private endo he put me on a 3 point plan. Increase levo from 50 to 75 and keep the T3 at 20 (cut in half) and in 6 weeks take a blood test and if need be switch to T3 40 and decrease levo to 25.

Well I have been absolutely awful and it has only been 14 days. I had two days in the beginning where I felt like things could get better but then it went downhill rapidly. I think initially I may have been fighting a virus as everyone in the family came down with something and my little one and I were the only ones not with a full blown cold. So I put it down to that, then the exhaustion kicked in so I wondered if it could be down to my period about to desend! Got through that and it just kept getting worse. Then the dizziness started about 3 days ago along with the need to take a nap during the day (no mean feat with a nearly 3 year old sat on you) and unable to even cook the evening meal.

So yesterday I called to speak to the endo and he again proved he is human. He didn't have my notes but remembered most of what was going on. I explained and the first thing he said was he wondered if my adreanals weren't coping. But then remembered I had had a couple of tests a short syn something or other which came back fine. He checked to see if I was feeling over active, heart palpitations etc which I am not and then said that I need to start taking more T3 so to take 20 in the morning and 20 in the evening and reduce the levo to 50. I said he had previously said to 25 but he wants me to do 50 to start with and if I start to suffer with over active symptoms to reduce it myself to 25.

I am confused by my own symptoms. To me the logical explaination is that my body is now not producing any T4 or T3 itself and that my body does not like the sythetic T4 at all. Anybody had similar?

12 Replies

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  • Dear poppy, sorry to hear you are struggling so much, after such a hopeful strategy. Its so hard when you have to just carry on and take care of people when you what probably really want to do is just look after yourself.

    On a positive note, it sounds like you struck gold with your endo. What a HUMAN!

    And as for you...what do YOU think is going on?

    It seems like you are taking quite high doses of t3, and your endo might be on the right lines when he questions your adrenals. In my experience, the synacthen tests only pick up pre-addissonian levels of adrenal failure...it's not a sensitive test at all. I've had it, results were fine despite 3 terrible adrenal stress index results. I would invest in one of these tests and take it from there. Lots of love to you. katey

  • Thank you Katey for your reply. I haven't looked into anything to do with adrenals since I had the test come back as 'normal' but I will look into it now. My endo seems really on the ball with understanding me as a person so I am still hopeful of getting better. Feel a bit better after taking the extra T3 yesterday and today, time will tell. I am so blinking cold I want to whack up the heating and my little girl is running around in a summer dress and no socks! Think it might be me - lol.

  • i am the same as katey, synacthen test was normal despite 4 terrible

    saliva tests.

    jonny

  • Hi Poppy, Sorry to hear you are not yet well, Just to let you know Dr P said to me adrenals are very important and if they are low and mine were really bad then no amount of thyroid will get to cells, over the last few years ive had a few adrenal tests done via Genova about £70 i think, I dont know whether Endo's recognise adrenal saliva tests though, perhaps someone on here knows? as they pick up adrenal fatigue,

    best wishes angie xxxxx

  • Hi Poppy

    My story sounds v similar to yours. My endo has put me on T4 50 and T3 40 previously I took 100mcgs of T4 but was unwell for a period of about 6 mths with symptoms as you describe . Confused as to whether I'm hypo or hyper. When I started the combination therapy I had high hopes. However I never got past 15mcgs of T3 as I felt so ill -fatigue got worse felt spaced out. My temps went lower to 34 I too suffer with low temps and pulse. I was taking my T3 in divided doses of 5mcgs. I had a feeling my adrenals were crashing further on the T3 and I did a saliva test, sure enough the results were very poor. So I have stopped all thyroid meds for few days and have started taking Nutri Adrenal Extra and then hope to gently introduce the thyroid meds again although I can't see me ever getting to T3 40! I too had a short syn test 5 months ago and it was fine! I'm seeing my endo at the end of the month to check how I'm getting on with the T3 - I may only be up to 10mcgs daily by the time I see how! So don't know what he will say. It's so difficult having to take so much responsibility for my own health - it's a lonely process. Keep us informed how you get on. Good Luck

    Alli

  • I got very sick on T3 didn't suit me at all made me very speedy. Sorry your having such a rough time.

    Dancer

  • Angel. Did you find by having the test you were able to sort out your adrenals? I will ask my endo when I see him next what he thinks since he mentioned it. Thank you.

  • Alii. Sounds like you are going through the mill too. I seem to be doing ok on the extra T3 at the moment but had a wobbly moment when I started it as I think it was too much too soon. Have now reduced to 25 of the T4 which seems to be helping (touch wood). You are right though when you say it is a lonely process. Thank god I found this website. Let me know how you are getting on too. I have now added the follow this link to this thread (doh!)

  • Thanks Poppy. Were you on T4 initially before you added in T3? If so how much T4 were you originally on? I'm still struggling with T3 feel a bit spaced out so I'm keeping the T3 slowly but maybe I need to reduce my T4 too.

    Alli

  • Alli. I was on 75 T4 but when the T3 at 20 was added my T4 went down to 50. I initially felt a little spaced out, then felt amazingly better then after a few weeks started to go downhill to the point that after afew months I could no longer carry a plate of food in one hand. The new endo firstly increased my T4 to 75 but I felt so awful on it, truly awful, he reduced my T4 back to 50 and increased my T3 to 20 twice a day. Not liking the 50 so have reduced down to 25 (he said to do this if I didn't like it). Feeling a bit better now but not great.

    How much T4 are you on? Did they not decrease it when adding the T3?

  • Hi Poppy,

    Dr P advised me to take HC for my adrenals first i was on Nutri Adrenal Extra and then HC as well, mine were 12 on a range 21-41 so they were very low. Dr P says to treat the adrenals before the thyroid but Id been on levothyroxine for well over a year before i met Dr P and didnt no anything about adrenal fatigue before that. I still have lots of hypo symptems so nowhere near better yet, on levothyroxine only and feel rubbish but still hoping to feel better one day. best wishes angie x

  • I was on 100mcgs of T4 for years and then started to have symptoms of hypo so had dose of T4 changed many times got to 125mcg but seemed to go hyper. I find it confusing to determine whether it's hyper symptoms or intolerance symptoms - symptoms seem to overlap. Endo decreased T4 to 50 and prescribed T3 40 daily - quiet a big dose of replacement therapy as T3 is 4 times stronger than T4 so 10mcgs T3 = 40mcgs T4. So I'm trying to juggle the dose myself and it's hard work!

    Alli

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