But 100 of levo doesnt seem to be enough as my tsh shoots to 9! (0.27- 4.5) and i feel depressed detached and horrible...
So i was put on alternate doses of 100/125 then after 8 weeks my tsh shot down to 0.15 (0.27- 4.5) and made me feel over medicated heart palps confusion weird anxiety basically hell... though my ft3 is at 5 (3.5- 6.8) so not technically over medicated but feel like it, i just dont think i need a ft3 that high to be honest...
So now im taking 110mcg of levo to see of if i mentally feel any better..
Does anyone else only need to take a tiny bit extra to get there tsh in range and feel normal??
I have hashis by the way...
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ThyroidObsessed
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Don't do everything to get your TSH in range. If you took it ten times a day it would probably be different each time. It is highest early a.m. and drops throughout the day. Food also causes it to drop.
Concentrate on your clinical symptoms being relieved and for that your need a Free T4 and Free T3 to be towards the upper part of the range. The TSH is meaningless once diagnosed unless it rises which means the person wouldn't be on a sufficient dose. I shall give you a link from TUK about tests:-
The TSH doesn't make you feel anything, whether it's in-range or out. So, I really wouldn't bother altering your dose just to try and keep it in range. But how you feel is entirely a different matter. If you feel better with your FT3 under 5, then that's the way it should be. But, be careful of symptoms. So many of them cross over from hypo to hyper, so it's sometimes difficult to know which is which. What exactly are the symptoms that make you feel you're over-medicated?
My symptoms are more mental i sometimes feel like im going crazy i go into horrible wierd anxious moods that i cant snap out of and feel like something is intoxicating my brain like i cant think straight and get confused in thinking whether im dreaming or not, its hell!!!!
I know im just not right and i havent been right since my tsh shot up and been nearly 2 years trying ro stabalise levels... iv tried having a higher ft3 and went through severe paranoia...
Im going through hell and just dont know what to do for the best anymore and the only think that slightly helps at the minute is a bit of alcohol at night...
My endo thinks im very sensitive to the thyroid hormone and any slight change can change my levels drasticly which seems to be the case...
I was fine and stable for 10 years on levo until my tsh decide to go up...
But those mental symptoms sound more like hypo than over-medication. Could you not try increasing very, very slowly? Your FT3 would be too low for a lot of people. But the TSH really has nothing to do with it.
Iv been adjusting doses for 2 years now and have been monitoring my bloods regular and have noticed the higher my ft3 goes the worse my metal symptoms are ... my tsh has always been a good reference to go by in my case as i was always fine with it just below 1 for 10 years i have primary hypothyrodism so my ft4 is always high unless i stop taking levo altogether then it drops..
Me and my endo have been taking my bloods weekly for the past 2 months since taking alternate doses of 100/125 and my tsh has got lower and lower and i have felt worse and worse... past week has been hell.. to the point i cant cope and do know how much of this mental symptoms i can take, i feel like im having a mental breakdown...
I have been alot better when my ft3 had been lower ...
i have primary hypothyrodism so my ft4 is always high unless i stop taking levo altogether then it drops..
Sorry, that sentence doesn't make sense. It would be exactly the same with secondary hypo.
There's no point in taking blood every week. It takes six weeks for a change in dose to be fully metabolised. And the TSH moves much slower than the Frees. And, if he doesn't test T3 at the same time, it's absolutely pointless because it's the T3 that causes symptoms, not the TSH.
However, it is possible that as your TSH gets lower, your conversion gets worse. How is your conversion, anyway? Have you had your nutrients tested?
Sorry, but that is not OK conversion. With OK conversion your FT4 and FT3 would be about equal in range. If you have to have your FT4 right up the top of the range to get your FT3 to 5 - which is only just over mid-range - then that T4 will be converting more to rT3 than T3, so it's not good. I'm not saying that rT3 is causing your problems, because no-one really knows what rT3 does. But, that's not how conversion is supposed to work. What was the highest dose of T3 that you tried?
Highest i go to was 5mcg and i suffered with extreme herrendous depression and anxiety through the roof, i know it was the t3 as when i stopped it stopped.. my endo agrees im too sensitive to hormones for me to tolerate straight t3...
Though id maybe consider trying ndt if things dont settle ..
Because at the minute my levels are still not stable and as i was fine for 10 years with stable levels i believe i will be fine again once my levels stabalise on the correct dose..
'Stable' is not really a word that should be used in connection with thyroid, because it doesn't mean anything. You can be 'stable' with a TSH of 0.1 or with a TSH of 100, but which one would make you feel best? What we need to aim for is 'optimal'.
But, which ever word you use, I don't see that as a reason not to try something new.
Hi, sorry you're feeling so awful I personally find the sort of symptoms you describe much harder to deal with than the tiredness, constipation etc. They really do make you feel dreadful.
I'm a bit foggy headed but I'm wondering a couple of things. I've read in one of my thyroid books (and sorry I can't recall which one) and on this forum that taking a small amount of T3 can make you feel worse. Conversely I've read on here (posts by marsaday ) and in a book called 'The Functional Approach to Hypothyroidism' by Kenneth Blanchard, that very small amounts of T3 work well. A quote from his book: "In my extensive experience, the average daily dose of T3 that results in sustained long-term improvement is about 1.2mcg daily in time-release form" and the talks about patients who are extremely sensitive to T3. Perhaps his book might be worth a read for you?
I've also read that if your FT4 is high but your conversion to T3 is not that great, which it sounds like yours isn't, that the T4 gets converted to Reverse T3 instead. If this happens I understand that a small amount of T3 can make it worse, and you actually need to take a higher dose. I'm struggling to remember the detail but I think Kell-E was the one who mentioned this to me. I've tagged her in case she can help!
A small amount of T3 can make your TSH go down significantly, making conversion efficiency suffer. Turning T4 into more rT3 and less T3. So the small amount of T3 added does not overcome the net loss.
In the case of poor conversion it is usually better to lower levo and increase T3.
From my own 36 year experience, adjusting doses is a nightmare, and did not work for me. I had to put my own dose up (T3 only) then work very very hard on other stuff. I had been suicidal for most of 36 years. I have sent you a Reply to your latest Post, and I must reiterate that it is not just the thyroid hormone replacement that will make you better. I had to do the AIP (auto immune protocol) diet, which involves cutting out everything - only eating vegetables, fruit, and bone broth. It's very difficult but I would have taken my own life if I had not taken full control & something very drastic.
It is vital to do this way of eating for 6 weeks so you can find out which types of food your body doesn't like. For example, I discovered my body does not like ANY type of grain. Foods your body does not like cause inflammation in your gut, which in turn can move to your brain. The gut/brain barrier is now fully understood; ie it used to be thought that inflammation from the gut could not travel to the brain. It can.
So - I will list what you must try now. And not worry too much about your TSH etc.
1. Start the AIP Diet urgently. (I will PM you how to make Quick Bone Broth)
2. Start taking high dose supplements.
***Most important is the Multi B Vitamins. All these eight B vitamins are vital for good mental health. I will PM you with details of what I take & it's worked miracles.
+ high dose Vitamin D (low levels cause depression)
+ high dose vitamin C (for healing & immune system)
+ high dose Omega 3 - or cod liver oil. (our brain is made of 80% fat, therefore all this malarky about low fat diet has caused a lot of mental health illnesses)
+ Selenium (helps the thyroid to convert T4 into the usable thyroid hormone T3)
+ Zinc (for immune system, is found is cells throughout the body, vital for memory/learning)
I will add here, that you just may have a faulty gene which means your body cannot convert T4 easily into T3. I had to pay for a DIO2 gene test from Regenerus (around £160) to prove that my body could only manage on T3.
What was your ft4 level on this test? Some people seem to be sensitive to the ft4 levels whilst most people aren't. I had neurological issues when my ft3 was in range (5.8 on range similar to yours) but my ft4 was just over its range. Could it be that you're also sensitive to ft4?
Yes im definitely very sensitive to the thyroid hormone, and yes my ft4 goes over range when my ft3 is near top of range.. i have also tried t3 but it was hell!! And didnt suit me
Yes I'm wondering if the fine balance between ft4 and ft3 is at play. I felt bad when my ft4 was high that's for sure but also bad when ft4 was high in range but ft3 mid range. My tsh was below range both times. Im at a loss right now as feeling v hypo but rather unlikely my bloods will support this, expect to be overdosed but had reduced Lio a bit for 2 weeks and was in a very dark place then.
Unlike some other perceptions of all this expressed here I feel very affected by fluctuating TSH and am very sensitive to levels of Levothynxne . I agree that trying to get TSH into the 'Lab Range' is not the be all and end all... The lab range isn't your range and only clinical signs and your ovn symptom records can help you find that , getting somewhere in the the Lab-range is merely the start, a rough target but not Your optimum. TSH is a vital indicator as part of the holy trinity of free T3 free T4 and TSH but infrequent snapshots of these are almost useless , you need consistent regular data from the same time in the day over a long period with dose data and symptom records to get a handle on where your optimum is. The effect of comparatively small doses of Levo, 10-12 µg a day over a few days, can send my TSH and my symptoms way over or under the optimum....... the healthy thyroid system makes continual subtle and exact adjustments that seem almost impossible to emulate with a straightforward consistent dose of levothynxine ....
This sounds exactly like me.. my tsh shoots up or down with very slight increases and decreases i believe im very very sensitive to the thyroid hormone the endo agrees.. after being ok and almost symptom free for 10 years on 100mcg i believe my thyroid has maybe been destroyed a bit more hence needing a little more thyroxin but in my case it wasnt as easy as just taking more, its been nearly 2 years of changes in dose different brands different side effects to the brands different doctors doing different things, settled on mercurypharma for the past 10 months and im still suffering...
For the past 4 weeks iv had my thyroid levels checked at the same time same day same circumstance once a week at alternate doses of 100/125 that i started 6 weeks ago, though my ft4 and ft3 started off high and tsh was at 1.7 and it was hell!! Detachment feeling im going crazy seriously thinking of checking in the mental hospital ..the frees have now dropped but tsh has got lower and lower and currently is below range, i dont feel right mentally so believe i am on too much so have reduced to 110 a day.. i just wanna feel normal...
Antidepressants are looking appealing at the moment 😔
I just read your general introduction piece and yes my symptoms are all like yours, so many of them are actually hidden and the doctors seem to think I’m making it up because I look so fit and healthy! Bloody idiots! It’s because they think lab ranges are the only thing to bother about and even when my blood levels are, what to them seems just a little under or just a little over, they choose to do nothing or even say I’m fine, when I’m actually feeling like death or mad. I would bet that almost none of the clinicians responsible for treating us are hypothyroid and even less of them are hypothyroid with complications such as reduced capacity to transform T4 and T3 et cetera et cetera and as I said before I think that levothyroxine can be quite toxic to some people - that is absolute heresy to almost all the clinicians and researchers let alone the drug companies! But levothyroxine has been known to create highly toxic affects in some lab animals particularly in association with histamine! And it is certainly true that the best way I have found of reducing my side-effects are to take antihistamines!
I get that horrible detached sensation and crawling scalp and weird temporal pulsing headaches which seem most likely pulsing levels of high tsh, but levothyroxine feels almost toxic to me and I take as little as possible under sufferance making up the rest from desiccated thyroid extract. I didn’t get on with mercury pharma pills and wockhardt seems the least worst but their 25mcg pills are too small to cut accurately and yes, sometimes it feels I’m going mental as a direct side effect not to mention going mental because of the side-effects! And of course, the endocrinologist just thinks I’m mental! After many years and many endocrinologists I think they are all bloody useless. It’s okay if you have a bog standard response to the medication but the slightest complication they simply do not know and choose to blame the patient, something has to change! I wonder if your head symptoms would ease off if you swapped some of your NHS medication for desiccated thyroid extract? If you buy in bulk from the states it is not that expensive. Unless you have some other need for antidepressants I can only think that they will make matters worse or more complicated or both.
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I personally find the sort of symptoms you describe much harder to deal with than the tiredness, constipation etc. They really do make you feel dreadful.
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