What's happening to me?

I can't describe how I'm feeling at the moment but thought I'd see if any of you knowledgable people might have any answers as my brain cannot understand my research as present.(I'm seriously trying not to cry).

After feeling so well due to adding T3 to my T4, I had a set back with some mild symptoms returning and just thought I'd overdone it as the time. Well a few months down the line and gradually getting more and more fatigued. Yesterday I got back from work(only 4 hours) and felt even to exhausted to take the dog out(which I do everyday), also felt very tearful and just not good. Today my pain has returned, achy back, arms and fingers(just like before), I'm freezing and can't think straight. I can't believe that this is happening!!!

I reduced my dose of T3 from 20mcg back to 10mcg about 4 weeks ago at the request of my endo as I had increased it myself due to my mild symptoms returning. Is it just this that's taking me back to being so ill again? Wouldn't it have happened sooner? If that's the case, does it mean T3 will no longer work for me as my initial starting dose of 10mcg was okay to began with, I don't understand how it can go to having no effect at all???

My last 2 blood test results are on my last 2 questions, can't have another blood test until 4 weeks but have an endo appointment next week. I was hoping to get him to understand how my TSH result doesn't mean I'm over treated but if I stay like this or worse will he just say the T3 is not working for me at all and take it away???

Please help, feeling very very lost :(

P.s. Here is a link to a document I thought might be useful for explaining that TSH doesn't mean everything but not sure if it's helpful or not as can't take it all in:

auburn.edu/~deruija/endo_th...

12 Replies

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  • Hi Den,

    So sorry that, like many of us on T3, you are finding it difficult to find your "sweet spot". I have just had a 50mcg's reduction in my T4 and I have found my symptoms creeping back. My nails are splitting, my brain fog is back and I generally feel unwell, and that a decrease in my T4 not my T3.

    I think certain aspects of T3 are like T4 - when you first start staking it you feel great but after a while the symptoms come back so you have to up the dose.

    Could you have an underlining problems with either B12 or VitD? Do you take any suppliments.

    I think when T3 isn't working as well as it was we should start looking at other things like diet and absorbtion problems. Its so easy with this illness to blame the level of thyroid drugs you are taking but recently I have found that my body is kicking against the thyrod drugs for other reasons, the tricky bit is finding out what other probelms this could be.

    I have found that diet is playing a HUGE part in my thyroid journey - sweeteners were a big problem and now I am trying to go wheat and sugar free I can honestly feel the difference. The timings of my meds are also questionable and since changing my timings my heart palps have almost gone. It really is a juggling act which we have to control very carefully. I have found its not as simple as throwing a couple of pills down your throat and thinking everything will be o.k. (expecially when you are on T3) you really have to work hard to change amost every aspect of your routine.

    Dont get down hearted Den, you will figure it out in the end - I have been on T3 for over a year now and am still learning and adjusting so its early days for you yet. You need to look on the positive side as you have an endo who will give you T3, all be it not as much as you would like, and there are many on here who would love one of those.

    Go back to your GP and discuss this with him/her. Shaws posted a link today regarding people on T3 and heart palps and it covered quite a lot of really good info regarding suppliments and how being low in certain things will effect your T3, have a look at it and see if anything rings true to you.

    lowcarbfriends.com/bbs/thyr...

    wishing you all the very best Den.

    Moggie x

  • Thanks Moggie :) I am taking Vit D prescribed by endo but didn't want to take anything else due to all the blood tests, not until I'd sorted the T3 dosage anyway.

    I've looked into diet a bit but eat pretty healthily anyway. In the past I've gone gluten and lactose free, to no effect and I was doing the Dukan diet for quite a while, eating only protein and then protein and greens. Although this helped me lose weight, it didn't seem to improve my symptoms but maybe I'll try again.

    I've also changed timings and now take my T4 at night(didn't notice a difference but kept it to this) and my T3 first thing then, then 10am, is there another sort of time I should try? However having it much later would cause me to be even worse in the am than I already am.

    I do realise how lucky I am at having my endo prescribe T3, which I why I'm so worried about him taking it away and of course I feel for those not as lucky as me, I know what they're going through as it has taken me years to get to this point. I just feel if I'm not feeling any better, it doesn't matter what he prescribes me as I'm still in the same position. He's not very flexible like some endo's so I have to tread carefully as I don't want to go backwards and my GP won't touch it, so will have to wait to see endo.

    I'll defo have a look at all the info you've suggested and I'm quite interested in the heart palps too. Mine went when I started on T3 but since lowering my dosage have come back with a vengeance.

    I think I just can't get over how I could feel so well after so long and then end up back where I started.

    Thanks again for all your advice Moggie, really appreciated. X x x

  • Have you told your endo about the palps going when you up'd your T3 - this might be the advantage point for you as being either over or under medicated can cause palps and since they went when you up'd your T3 then your cause was more than likely being undermedicated.

    Would he be the sort to take on board any written evidence if you provided it?

    As for timings - the only thing I can suggested is taking it with your T4 last thing at night but your say it will make you worse the next day. Do you know this for a fact or are you just guessing. If you haven't tried it why dont you do it of a weekend (cant remember if you work or not), that way it wont cause major problems if your energy levels go down slightly.

    Sorry I cant be of much help Den but I think your first port of call will be trying to convince your endo to up your T3 to 20mcg's again - ask him for a trial with a promise that if you feel you are over medicated you will stop immediately.

    Good luck Den and let us know how it goes.

    Moggie x

  • No I haven't seen him yet to discuss what's happened since I upped and then decreased my T3. I think he'd look at stuff written by docs and I've found a few bits and am hoping he'll take it onboard. I'm just guessing by how I feel I need it first thing but night time might work so I will try at the weekend :) I'm going to do my best to get 20mcg back as I definitely didn't feel overmedicated. Thanks Moggie

    D x

  • Den,

    It has just come to me that you said you weren't feeling to good when you came back from your holiday abroad. Could you have been bitten or caught something there that would explain this? I ask because when I first found this site there was a lovely lady who helped me loads but she was struggling to feel well even on a megga dose of T3. After sheds loads of hospital admissions and untold tests it turned out she had been bitten months and months before by some exotic bug and her last post on here went along the lines of - if you are still feeling unwell look elsewhere for the solution - its just a shot in the dark Den but you never know.

    Moggie x

  • I was already feeling no quite as good before I went, hence upping my dosage but by the 3rd week away started to get really tired and faint and it took me ages to recover from jet lag etc when I got back. So I don't think it was that, although when I first started to get really ill was when I took up running. I often ran in the woods with my dog and always though it was the running that really triggered the escalation in my symptoms. However, I've since read some things about Lyme disease and have wondered if it's worth asking my GP? Don't want to seem like I'm jumping form one thing to the other x

  • I think that's what this lady who I am talking about had - the tests in this country showed nothing and is wasn't until she went to hospital in America that it was picked up. She didn't even know she had been bitten. If you do get your T3 increased but still feel no better it might be useful to mention this to your doc.

    Do you know what time your appt is and are you having more bloods taken - lets hope it is in the morning as reading one of Rod's latest blogs there is quite a big difference in the TSH reading if they are done in the afternoon - they turn out to be a lot lower, if he wants to send you for bloods after he has seen you and it is in the afternoon it might well be worth your while to go back the next day as early as possible and have bloods done then.

    Moggie x

  • Thanks Moggie, will do although I'm not sure how they test for it here, I'll research if necessary. :)

    My appointment is in the afternoon but I've been told I have to wait 8 weeks between blood tests, so still got 4 weeks to wait. I usually got to the docs in the morning to get them done. It's actually just made me realise, that my gp surgery always wants them done early but I've had a couple at the hospital and the endo doesn't seem to bother that they're in the afternoon hmmm.

    D X x x

  • If your Endocrinologist reduced your dose due to your TSH level - this is a quote from Dr Lowe. Although it states T4, I assume it also refers to all thyroid hormone replacements. I don't have the link at present but the quote is self-explanatory and I doubt if the Endos know much about metabolism.

    The TSH level is not well synchronized with the tissue metabolic rate. (Probably most doctors falsely assume that studies have shown that the TSH and metabolic rate are synchronized. But despite my diligently searching for years for such studies, I’ve yet to find them.) Adjusting the T4 dose by the TSH level is like adjusting the speed of your car by a speedometer that's out of synchrony with the actual speed of the car. Adjusting the speed of a car by an out-of-sync speedometer, of course, will get the driver into trouble—either with other drivers who'll object to the car traveling too slowly, or with a police officer who'll object to the car going too fast. And adjusting the thyroid hormone dose by the TSH level gets most patients in trouble—almost always because their tissue metabolism is so slow that they are sick.

  • Thanks Shaws, I'll show this to my endo, definitely makes it clearer :)

  • Here is a link to research about TSH circadian variabliity. Either your endo takes this into account, or s/he does not know about it.

    ncbi.nlm.nih.gov/pubmed/228...

  • Thanks for this, useful info to have. Sometimes it's difficult to be sure of what they do and don't take into account lol

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