Does this mean I shouldn't try to reduce t4?

[puncturedbicycle]

Levo does very little for me, but with the addition of t3 my quality of life really improved, so if I ever feel like I'm on a little too much medicine I don't like to reduce my t3; however every time I try to reduce my t4 I get hair-raising anxiety - really crazy panicky tearful anxiety.

I thought I had gone a bit hyper so reduced t4 by 12.5mcg for a few days and the anxiety hit me today. I took an extra 6.25mcg t3 - should be plenty to compensate, right? - but it hasn't really touched it.

Why doesn't the t3 'make up the difference'?

And does this mean I shouldn't ever try to reduce my t4?

Could it be falling levels of t4 which create this feeling?

[Aurealis]

I don't know the answer punctured bicycle, but I know that I don't function without taking t4, even though I've made an amazing recovery with T3. With me it's sleep that doesn't happen unless I take T4, so I start to feel ill, paranoid and losing touch. It seems that a balance of T3 and T4 is needed - or T4 has a unique function of its own. Anything below 50 mcg and I run into trouble within about 3 weeks. How sad that Endos can't answer these questions for us! I won't be reducing my T4 below 50 for anyone.

[puncturedbicycle in reply to Aurealis]

Thank you so much for your reply.

I was on 75 and I literally just took a quarter off and three days later I felt bonkers, and the t3 just fails to work on that in an effective way.

I used to be on a higher dose of t4 and the same thing happened then. Even a small reduction would make me feel awful anxiety. Now I'm on a lower dose so it must be possible, but I suspect it was a thyroid wobble - where it suddenly started belching out hormones - which necessitated the reduction (so in other words I wasn't trying to take less than I need).

I got excited that maybe if I could be on t3 alone I might feel really well ('if a little is good, a lot must be better') but I just become a gibbering wreck.

Good for you! Stick to your guns.

[Aurealis]

My theory is that the wobbles only occur when dose is too low - usually my TSH is suppressed, that's where I like it, but if I reduce dose too far I think that sometimes TSH comes in then thyroid goes into overdrive. Risky, as that would mean that an increase in dose is necessary to suppress it again and effectively reduce levels. But don't try it while you're feeling really anxious - and have a glass of wine ready to bring the anxiety down. I prefer red!

[puncturedbicycle in reply to Aurealis]

This is an interesting theory and makes sense. Yes, I felt well all summer/autumn and then suddenly went hypo and nothing has been right since then.

I feel like I'm only well when I'm right on the verge of being hyper, which makes me worry for my long-term health. I don't know whether to trust the blood test or the Broda Barnes. They are never in agreement about whether I'm on too little or too much.

Red sounds good to me!

[Aurealis in reply to puncturedbicycle]

I'm also at my best on the verge of being hyper but I'm not worried as I've had a bone density test which was ok and I think the risks to heart are greater if hypo (based on my experiences). If you run out of red, rose is good too!

[puncturedbicycle in reply to Aurealis]

Okay, this gives me confidence. When I win the lottery I'll have a dexa scan and echocardiogram every year to give me peace of mind. Oh and a cardiologist on call.

I am worried about the people here whose criteria were similar - kept themselves near hyper - and ended up with heart damage. I listen to everyone's story, but then I get confused and worried.

Rose might give me a headache but I'm very partial to a beer.

[Aurealis in reply to puncturedbicycle]

Had dexascan on NHS - GPs idea

[PinkNinja]

It sounds like you need the t4. How much T3 do you take? It might be that occasionally you might need to very slightly reduce your T3 next time you are hyper.

When you are feeling hyper but reducing your dose causes other symptoms, it could be that your iron or ferritin is lower than you need it to be. This might be worth looking into of you haven't already.

Carolyn x

[puncturedbicycle in reply to PinkNinja]

Hi CarolynB. Thanks for that. I have these tests scheduled for next week. I suspect I am anaemic now because in the last three four to six weeks or so I stopped taking supplements before a blood test (so I didn't skew the test) and my face has gone very grey. I'm on 25 t3.

Surely a month or so of stopping the supplements shouldn't mean I'm in free fall. I need to find out if I'm failing to absorb nutrients. I normally take loads of supplements but I don't think stopping them should mean I become ill more or less straight away - ? I have a good diet. I'm thinking maybe I need some hcl tablets because I began getting heartburn and it is more or less chronic now unless I dose myself with apple cider vinegar every day.

The only times I have gone hyper on a steady dose (not increasing) are 1) when I took all my t3 in one go and 2) once when I split my last dose of the day, which was not an increase, just a small slightly later dose. This was the most hyper I have been - not just a bit over but raised temp and heart rate for about two hours. I did not reduce my t3 the next day and have not been hyper on this dose again, so I suspect it was something to do with taking it late in the day.

The t3 is where all my well-being seems to come from, so when I reduce I feel flat and get very swollen. The t4 seems to do nothing good for me (except keep my anxiety in check I guess) but despite my feelings about it it refuses to be reduced.

When I am wobbling back and forth like this it's hard to know how to correct it without changing too many things and then you lose track of where you are altogether. I felt well last spring/summer and great in Sept/Oct (I suspect slightly overcorrected) but since then I've gone from hypo to hyper and back again.

[PinkNinja in reply to puncturedbicycle]

It could be the iron. Sounds familiar. I get low in iron very quickly. Glad you're getting tested though. That might reveal something.

I'm the same with t4. Doesn't seem to do much for me but I'm good for nothing without t3.

Carolyn x

[puncturedbicycle in reply to PinkNinja]

Always good to hear similar stories. When it all goes wrong I despair. x

[Jackie]

Hi Any changes in meds must have bloods done, TSH, T4 and FT3 azfter 4-6 weeks, then if altered repeat. This is essential for the god safe treatment and the only way. You do often need to reduce t4 when also on FT3, but depends what they all were first and after the 6 weeks etc.

Best wishes,

Jackie

[puncturedbicycle in reply to Jackie]

Hi Jackie. I'm afraid we will have to agree to disagree. I went hyper after being on a steady dose of t3 and t4 so I had to reduce immediately.

[kosmickaz in reply to puncturedbicycle]

I agree. Blood have rarely, if ever reflected how I have felt.

Adherence to them in a rigid fashion has done me no favours whatsoever. In fact quite the opposite!

[puncturedbicycle in reply to kosmickaz]

I understand Jackie's point and I heed her warnings. I too worry about being overmedicated to the point of hurting myself, but having a blood test every time I may need a tweak is just not workable. I am trying to find the right balance.

Blood tests tell me one thing and Broda Barnes the opposite. I'm struggling to understand what it means.

[kosmickaz in reply to puncturedbicycle]

I understand. But, over reliance on testing rather than using the blood results as a foot note/guide to the clinical presentation (which should take priority) seems to be commonplace - and its a big problem.

rather than trusting the clinical presentation and looking deeper the standard blood test result are governing practice and keeping many of us ill.

I would trust my pulse rate, BP and temp - general energy etc over any TFT.

[puncturedbicycle in reply to kosmickaz]

I'm lucky(ish) as I see a doc who would dose me up to the eyeballs if I said it helped. Doc is happy to oversee any tweaks and only asks me to reduce slowly if my t3 is really out of range. Of course it's nicer to have flexibility than rigidity, so I prefer this doc to the NHS endo/gp, who would have me on 150mcg t4 and tell me my numbers look great.

In truth I don't trust any of them. I don't think "good doc" is careful enough and the others are too rigid.

My pulse and temp don't really change, with the exception of the one mysterious time I went bizarrely hyper for two hours with no increase in dose. So I am reluctant to trust them. I can't seem to resolve the argument for myself.

[Jackie in reply to kosmickaz]

Hi I say this as a while ago, when I was treated by a private doc., he went on how I felt. I was very ill. When I finally had bloods done and saw my now endo. We discovered that without the blood tersted, I had been made very ill indeed and overdosed. When I was made hyper and when Hypo, my symptoms were identical, including my temp. This, I now know can be so. I just feel safety is so important. f one feels "off", I suppose to clarify ,I should have said to have an immediate bloods done and then reduce, even before the results. unless a blood test at the time, impossible to know for the future.

Jackie

[kosmickaz in reply to Jackie]

I don't understand. Maybe I am missing something?

Can you explain how your vital signs would be identical in hypo and hyper thyroidism - and why? Why would your temp still be low?

A central problem?

[Aurealis in reply to kosmickaz]

I can't explain but I have experienced it - I think of it like octaves on a piano, the best place is the same position within the octave but I can sometimes end up in the wrong octave - I'm no musician, this could be nonsense!

[puncturedbicycle in reply to kosmickaz]

Me too. The only time my temp/pulse went up was when I had my mysterious hyper episode. I often get t3 results over the range but my temp is low within the normal range. Has been all my life.

[puncturedbicycle in reply to Jackie]

Hi Jackie. Sure, I know your story and totally understand. I think it was Moggie - ? - who had a similar story.

I agree with you that it is important to guard your health and have the tests when you can't seem to resolve an issue or when you feel ill. My problem is that I have had them when I feel well and t3 was through the roof.

In fairness the first time I was hustled off for tests soon after I took my dose, so I can't trust those results, but recently I took a greatly reduced dose - I needed a little t3 in my system - and had the test probably nine hours later and it was high, and everyone was in a tizz about it. Endo will no longer supervise what he sees as my wild ride on t3 - fair enough and no great loss.

May I ask you a personal question (and I do understand if you prefer not to answer)? Do your bowels not tell you when you're over or over? For me this seems to be the only dependable sign.

I am the lady who asks everyone about their bowels.

[Jackie in reply to puncturedbicycle]

Hi You made me laugh. I actually have every conceivable thing wrong with my gut and abdomen, so would not know this way.!

I am sure you know to always split the T3 and try to take it 12 hours apart? When your FT3 high was your T4 Ok?ie in only in top third of range.I do need my FT3 near the top of range, so it is tricky!

Jackie x

[Aurealis in reply to puncturedbicycle]

I do the same sometimes - I know from how I feel if I have to reduce (or increase) the problem is that on T4 with T3 it's sometimes difficult to know what to reduce and when. Even GP and Endo have ignored my test results at times, as I can be obviously poorly/ unable to work etc, but pick up quickly with dose change (in both directions)

[puncturedbicycle in reply to Aurealis]

Yup.

[Jackie in reply to Aurealis]

Yes, my Endo does not go solely on bloods, none of my good consultants do for anything.Actually since that episode my heart soon tells me if FT3 too high or too low, then I have an extra test, pronto!

Jackie

[Aurealis]

Hope tomorrow's a better day for you punctured bicycle