Well I'm doing ok but not brilliant. I am not yet fully medicated so still raising.
I'm now taking 88.5mcgs Levothyroxine and 15 mcgs T3 it's taken 10 months to get this far.
My last bloods were
TSH - totally suppressed
FT4 9 (12-22)
FT3. 5 (3.6-6.8)
What I need to do is raise my Levo. I'll explain.....
I've had a lot of problems raising levo in the past and have to do it very slowly because of it triggering psychosis.
Ideally I would like to raise my levo because I need more stability in the bank. Safety really. But taking T3 too is confusing me. ( not physically!!)
How do I do this?
Do I just keep raising my levo? And leave my T3 dosage the same. I am still really under medicated.
The awful symptoms have disappeared now so clearly I'm on enough men's to get rid of those.....they were
Minor seizures when sneezing
Sleep apnea,
Loss of swallowing
Stammering.
Loss of speech.
Things have been bad. Terrifying at times.
I can only do 12.5 mcgs of levo every 6 weeks without hitting problems.( psychosis)
I have a brill endo who diagnosed tertiary hypothyroidism and put the T3 in because he couldn't bear how painfully difficult it was for me to raise the levo and just wanted to get some meds in to me quickly. At one point he was considering putting me on a T3 drip but thankfully it hasn't come to that.. He's a godsend.
But now I feel ready to raise the levo again. Bit by bit. I can't see my endo for ages and he is very happy with me having a go raising the levo. Whatever it takes....he says. I'm very lucky I know.
So how do I do this?
I don't want to lower my T3 meds because I'm frightened the awful symptoms will come back. My endo wants to see my FT3 at the top of the range or at least high enough not to cause hyper symptoms.
I tried to raise my T3 recently but went a bit hyper. It was just too much too soon that's all. I can only raise my T3 by 5mcgs every 4 weeks otherwise psychosis problems kick in too.
So as you can see. I'm tricky.
But I DO want to raise my Levo for safety reasons if nothing else. I am about as overt as it gets. Full blown myxoedema. It frightens me and now I'm crying! ?..note to self....MUST STOP IT!!!I
According to my endo. Treating the hypothalamus is tricky because you really can only go on how the patient feels.
You have told of symptoms that have gone but not of what is left.
If you still feel undermedicated, I would raise your T4 because that will make some convertion to T 3 anyway so both levels should raise.
I think you know how to do it...you are just reluctant due to past history.
Raise T4 by the 12.5 mcg that you say your body will accept.
For confidence you could take your temp and pulse every morning and evening to monitor how your body is reacting. That way if things get heated, you can miss the odd day of the extra bit but record everything so you know rxactly where you are.
You have fine so well to come this far and another few months and you may be optimally medicated....perhaps be feeling great for christmas??
Lol
Good luck, Flower
in reply to
Flower thanks so much. This has been a horrible journey and I could never have believed that I would end up so ill with symptoms that have been just horrific.
My remaining symptoms are.
Terrible fatigue,
Flu like aches everywhere,
Swollen fingers and ankles
Joint pain,
Crippling foot pain,
Tearful but no depression
Flat mood.
No stamina,
No motivation
Heat intolerance
Cold intolerance
Headaches.
Weight gain
They are the main ones. I have just begun to see an improvement in my hair which is encouraging.
I will continue to climb, all be it slowly.
I am hugely better than I was simply because those horrific symptoms I mentioned earlier have gone.
I will keep everyone updated and when I finally hit the golden 100mcgs of levo I shall be on this site in a flash ...... Boasting!!!
One thing to note.....if you are central hypothyroid.....there is no eyebrow loss!! There's a bonus!
Joesmum, increasing T4 dose by 12.5mcg will improve FT4 and FT3. If you're nervous you can increase more gradually by adding 12.5mcg alternate days for 2-3 weeks before increasing by 12.5mcg daily.
Think I'm going to take this fairly slowly. I wasn't sure if it was ok to raise T4 when taking T3. I know that sounds a bit daft but most people do it the other way round and I couldn't find any info on it. I am determined to get to 100 levo!!!!
If your TSH is totally supressed (ie near enough to zero) the T4 you are taking will actually be working against any T3 you are taking or have in your body so no wonder you feel awful. The reason is that the lower the TSH, the more Reverse T3 is created by your body from the T4 you are taking, blocking the T3 you are taking. When your TSH is this low the only medication that will work is to take T3 only but it will take time for all the reverse T3 and T4 to work out of your system. I went through the same cycle of having a virtually zero TSH and nearly died as Endos dont seem to have a clue about the conversion of T4 to T3 and Reverse T3 . Eventually I came across Paul Robinson and his books which explain this and moved onto just T3, which has saved my life.
I also have a diagnosis of Alzheimers which was made around the same time as my battle with the Endos to get treated properly. Since I have been on just T3 my mental state has improved significantly and my dementia dr has now said that at least part of my Alzheimers is due to the incorrect treatment of my thyroid condition over the years. Its now 10 years since that original diagnosis of dementia and i am still hanging in there popping the T3 pills and still functioning reasonably well.
Good luck!
Heather
PS have you ever had a head injury, even as long as 25 years ago? I am now pretty certain that my Pituitary was damaged when I had a head injury about 25 years ago when i had a basal skull fracture and its been slowly giving up the ghost and now not producing TSH any more.
Thanks Heather that's really interesting and informative.
I have tertiary hypothyroidism due to familial hypothalamic dysfunction. diagnosed very late having had symptoms for 30 years!
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