To Jackie, yes I believe it will take awhile since I have had this for eight years. Just never did anything because the t3 and t4 were alway

normal until now.. As I stated to Louise, I am scared because such a low dose has already decreased tsh and stabilized my t4. So will I go hyper now, or will the low dose only take me down and stabilize so much if I need a stronger dose. Will it stop working altogether if the dose is not strong enough?Scared and confused.

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  • Hi First of all do not place too much reliance on what the TSH is, T4 and Free T3 are really more important and how you feel is essential part of the treatment level.You need to ask the receptionist ( sec at hospital) for a print out and ask for the ranges, most different and essential for interpretation.Always keep For bloods the true picture can only be seen by havng TSH, T4 and free T3 done. The T4 should covert in the body to lower the FT3 and lower the TSH. This is often not sufficient just on levo, which is T4. You need all these bloods to see what is happening. It is quite usual to need some Levo and a little T3 , separate drugs on a script Generally T4 needs to be in top third of range and FT3 near the top. However, the main criteria is how you feel. Your thyroid does stabilise once the doses are correct and the bloods should show this. This can take as long as year or so, even then there are ocassional blips. You will always have the disease but controlled with the permanent meds ( except in rare patients)Bloods are done very frequently until stable with increases in meds as needed. Once stable you will realise when the thyroid has "gone off" and ask for an extra blood test, otherwise ideally bloods done 6 monthly but your GP may just do them annually. It is important to notice how you feel as it can get worse for lots of reasons , especially age. I hope this helps,

    Jackie

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  • Thanks so much Jackie. I take it a dose can work for awhile and then maybe a year or two down the road it weakens and you have to increase because of age and maybe stress?

  • Hi Yes, that is exactly right. When ever you feel "off" request a blood test if lasts more than a few days. I have had Hypo/ Hashi for 50 years but not diagnosed for about 20. In that case it can take a while but I am normally very stable now. I do have more tests than usual because my heart is very bad, nothing to do with thyroid but levels important with heart disease.If you get to the stage that you feel "stuck" do find a good Endo and then ask for a referral ie do not rely on a GP`s choice.

    Best wishes,

    Jackie

  • I have seen an endo and she seems to know less than me. Had to convience her the low dose was working. She wanted to jack me up to 75 right away but I convienced her to do another blood test. She was shocked that I came down so much in two weeks starting and it made me feel so abnormal. This is why I am so anxious.and trying to understand that my body is doing the normal thing. She is a young doc so maybe she is just learning. I am calm most of the time but then get anxious because of so many changes. Is has only been three weeks for me and I know this.

  • Hi Yes, unfortunately some docs of all types are not too good. Above all you need to research your own and a good listener who works with you is vital , My own Endo always says , I know my body best and what is best or not above any docs.my blood is odd in every respect and it causes a lot of problems with ignorant docs, just had a row with GP on the phone, told him I am peculiar and cannot expect my body to perform as others do!

    Best wishes,

    Jackie .

  • Exactly Jackie, I don't feel so alone now. I am tiered of some doc's acting like I am from another planet because my blood, body, whatever, doesn't respond to textbook rules. Can I be so bold to ask about how your blood is different as well>! I appreciate your advice and this group so much. You lot have really helped me with my anxiety and ways of finding answers.

  • Hi Where to start. I have sticky blood, on huge doses of Warfarin which panics hospitals, I refuse their INR test and DIY, inspite of bullying. I have very odd Potassium levels which cause me to have arrests with a little help from their friends. That is not understood, hence the argument with the GP yet again, today.I said that I would just buy it ,in theend. Many years ago a cardio in hospital told me that my blood is so odd , does peculiar things and no one could possibly understand it but me. He said that no one but me must ever touch my complicated medication and must always look after myself.I have emergency admissions every few months, so you can imagine the arguments and sometimes bullying I have. TSH is so low cannot be measure ( not pituitary gland) but quite bad hyo and hashi, PTH questionable, thyroid swollen and nodules. So , you can see I have to have exceptional docs. When discharged recently after 6+ weeks , cardiac, liver and CCU etc, consultant cardio said that I cannot expect any one to understand as all my bloods etc so complicated. I hear that regularly. I do think liver some thing to do with it actually. Liver disease, not drink etc. I have a joke with my good consultants, I always listen to them , then tell them why they are wrong, very good so not a problem with them.

    Best wishes,

    Jackie

  • Oh Jackie, you are one strong woman to have to endure all these issues. It is so kind of you to help others when you have so much to deal with. I just better learn to deal with this and quit whining. I just get scared because with a tsh so high, I know you can go into a coma. When the doc says I don't know, that is really unsettling. I don't understand why they cannot level the potassium though. That is very important for the heart. I have had labrynthitis for the past nine months and was just getting over that. They think I had some kind of stroke last October. I had no equilibrium and when I would try to walk it was like bouncing up and down on a rough ship. No spinning just couldnt walk or look down without the pavement coming up at me. I tell one it is one thing after another.

  • Hi That is horrible. potassium is the main cause of sudden death, cardiac, any age. If some one solved it they would be rich. Half the medics do not even understand it ,mine is worse than most. Actually it is because I have had so many "fights" with docs that I try to help others, where I can within my own limitations.I have had lots of things from consultants sending me home to die, A favourite with them, cardiac arrests, caused by consultants, MI`s, the list is endless. Not so easy in ITU and coma as does happen with me.

    Have you thought of trying to see another Endo? pick your own first, on the site, or look up names on hospital lists, then cross reference, lots have their own sites, also often more info on private hospital pages, local to hospital or their home, usually.. Then you phone the sec if seeing NHS, or private hospital etc, and fish! basically ask which treatment they like, also how important blood tests are to them.you can usually get a feel for them. I do pay for most of my consultants, simply because they have more time. I also get meds and tests etc thro my GP, quite usual to do that. of course, if you pay ,you can go any where you like. ,with a referral. i know in theory you are meant to be able to do that NHS but I know ,not that easy.I have also learnt to "dump" rotten ones, even if nice!

    Have a think about it. It is not good to live like that if you can find some help, it is just a question of lots of research into your conditions and finding a wonderful consultant.

    Best wishes,

    Jackie

  • Thank you Jackie...problem is funds are limited at the moment. I am kind of stuck at the moment.

  • Yes I understand. However, usually ones good privately are also good NHS, I find, just time. So, do have a hunt around for a good NHS one. Revcently in H I had such a bad consultant, made me iller( ?) and then asked if I wanted to go home to die or stay in. and I complained, informally, had a wonderful one, never met me, on holiday and came every day to see me and spent ages on phone calls,e mails etc to my various consultants. In fact the hospital, largest in Europe is run by the registrars, like consultants else where and normal is one consultant visit a week, if lucky. I know partly because dying but even so this chap was fantastic.I have met a few others just as good but needle in a haystack and need lots of research.

    Best wishes,

    Jackie

  • I have had doc's in the past that have been so cruel and heartless and then have come across caring ones. I guess we need to remember that they are all human and all have different motives for being caregivers. Yes, the hunt is on.

  • Did you mean to say 'raise the FT3' in your first post above Jackie? [5th line down]

  • what I meant to say was the ft3 went up two points and is now completely in normal range. I am so pleased but it is happening so quick it kind of scares me since my doc thinks it is so bizzare that such a low dose could work so well. Why do you ask about the ft3? It was in normal range before but now is even better.

  • Pleased for your result.

    No, the query was for Jackie- in her first answer post to you [above] where she said FreeT3 would go down. I thought the FT3 level converted up [following the T3], but it does depend on how much the body actually uses up, I suppose.

    Not sure if it was a simple mistake -or I was missing a subtle point.

  • Yes, I checked my labs. According to my lab normal range for ft3 is 1.8 to 4.6. The first time they drew it I was within normal range at 2.3. After starting the 25mcg of levo it increased to 2.7. So I guess it can be true what they say 'dynamite comes in small packages or doses sometimes. Just hope it keeps going good.

  • Hi Yes I did mean raise, sorry, I did read it through but missed that. still not too good, thought brain had recovered obviously not!!!

    Thanks,

    jackie

  • You are great... You should know about some of the backward stuff I have done!!LOL

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