Hypothyroid agitation?

TSH agitation over 6 weeks when TSH 180 then 100 then 77 will get T3 readings at that appointment. Thanks to this site I have discovered its T3 not TSH that causes whole lot of side effects.

I am extremely agitated with very little patience & have a short temper at the smallest of things which I never had before also haky & jerky symptoms normally associated with hyperthyroidism.

Doc's increased dose of thyroxine to 225mcgs had had 24 uneventful years on 175mgs prior to the events of 6-8 weeks ago. Could I now be hyperthyroid? Would increased thyroid have had enough time to tip from hypo to hyper ? (having thyroid bloods checked in 4days) would account for symptoms normally associated with hyper

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  • People do not tip from hypo to hyper. It is a physical impossibility. If your thyroid is working so badly you need to take 225 mcg levo, it is not suddenly going to up it's game and go the other way. It's probably dead, anyway.

    On the other hand, you could be over medicated. But a blood test will tell you that.

  • greygoose that's gps words 'tip into hyper from hypo' I know should have checked nyself..I was wondering what you meant ' it's probably dead anyway ' ?? I realise I have posted fair amount of questions. I can't be ill I'm single working mum for my son aged 20 who is receiving palliative care so need as much swuppirt & advise as possible as all but overwhelming...thabjs

  • Yes, I realise that's one of the things doctors say, but surely you must have realised by now that they have no idea what they're talking about. You have to know better. How could you possibly have 'gone' hyper with such an enormously high TSH?

    What did I mean about 'it's probably dead'? Well, your thyroid is probably dead which is why you need such a high dose of levo. Thyroid glands do die off if you have Hashi's. I don't know if you have Hashi's. It's possible you do without even knowing it.

    I'm so sorry about your son. But, the fact is that you are ill, and being in denial is not going to help. And you're not going to get better unless you get the right treatment. And, at the moment, you're not getting it.

    You don't ask a lot of questions, you keep asking the same questions, and people keep giving you answers. You even got an answer from Diogenes in your last thread, which is somewhat rare. He really knows what he's talking about, so you really should follow his advice. Go back and read it.

    His suggestion was that the TSH readings were wrong because of antibodies which affect the standard tests. This does happen. You need to suggest that to your doctor who should then find a new way of testing your TSH that is not affected by the antibodies. Such tests do exist. And, if your doctor does not know about these antibodies and these tests, then he should send you to someone who does.

    Having said that, it is not the TSH that is the most important reading. It is the FT3. Did you have your FT3 tested? If your FT3 is well over range, then you are over-medicated. If it is low, then you are hypo and probably not converting all that T4. If it is just under the top of the range, then you need to look for other problems, like nutritional deficiencies, or low/high cortisol. These are normal procedures, but your doctor does not seem to be following them.

    The best thing you can possibly do is take a deep breath, make a cup of tea, and sit down and reread all the answers to your last few threads, take notes and then try to work out a plan of action to take to your doctors. OK? :)

    Take care. x

  • greygoose I wanted to pick your brain's 're hypo with such a high TSH as it appears i have become hyper after six weeks, gp cannot explain what is causing these hugely abnormal readings within such a short time frame, thyroid bloods checked yesterday am & hospital labs called my gp as alarmed at readings yesterday evening, gp called to let me know results & he was trying to get hold of endocrinologist but 1700 on a Friday guess he got no-one, TSH now 0.2 from 77 six weeks ago & T4 was 12 six weeks ago & now 26..help any and all advice be extremely helpful as I can't make sense of all this..

  • No, you have not become hyper. That's a physical impossibility. You are just over medicated.

    Those very high TSHs were obviously false and - as Diogenes suggested - affected by antibodies. And, should have been investigated as he suggested.

    But, instead of that, your doctor over-reacted and grossly over-medicated you.

    On a dose of 225, it was obvious that your FT4 was going to shoot sky high. And, as it happens, the TSH reading wasn't affected by antibodies this time - it isn't always - and appeared low.

    What is going on is antibody activity and over-medication. Nothing to do with your gland or 'something else'. Lower the dose - gradually - back to what it was before all this, and things should fall back into place. That's how I see it.

  • greygoose thanks for your advice my thyroid antibodies well within normal range & I wasn't over medicated when TSH 180 then 100 which is when endo increased thyroxine from 175 to 225, he took bloods which had the TSH at 77 so in two week period THS went from 180 to 77 with no increase in medication only then with reading of 77 increase in thyroxine & on that dose for last 4weeks so not due to antibodies & wouldn't expect to have had such over medication in 4weeks to have levels & symptoms associated with hyper I really need answers as to cause so I can make sense of all this.

  • No Not thyroid antibodies. TSH antibodies. Not the same thing. These are antibodies that affect the testing of TSH, giving false high results. NOT antibodies that affect your thyroid gland.

    People are giving you answers, but you're just not listening!

  • If it is TSH antibodies, a competent doctor would understand what to do:

    1) Get two or more samples of your blood from one blood draw;

    2) Send samples to two or more labs that are independent of each other and use different analytical techniques (preferably including a lab which uses a technique known not to be affected by TSH antibodies);

    3) Compare the results.

    When doing this, they absolutely should test FT4 and ideally would test FT3 from the same samples. That allows investigation of the correlation between TSH and FT4/FT3.

  • greygoose there is a huge difference from not listening to understanding

  • Then if you don't understand, say so, and someone will explain. But, keep asking the same questions over and over just seems as if you aren't listening.

    Which bit don't you understand? :)

  • greygoose I'm just not getting whats happening to my body & what the results mean. Honestly I'm the person who manages & makes sense for others when they are dealing with everything life throws at them. I am the problem solver & this has totally floored me as I can't retain the info your all kindly providing. I fight to ensure my family & friends get optimal care & I've nothing left to fight for me. I really don't want to sound self pitying it's just a fact at a time when feeling so ill I'm unable to make sense of it all so I can understand & let others know what's going on. In Scotland I don't know where to begin looking for independent private labs to follow your & Doc Diogenes advice, I don't know what the difference is between thyroid antibodies & TSH antibodies. I don't know what's happened to my thyroid over the last 8weeks, healthcare professionals can't explain what's going on & as I don't know I can't make sense of it all & bottom line im absolutely exhausted & just want someone to say this is what's happened to make bloods at this level & produce these symptoms & this is what you need to do to make it all right again...anyone with a magic wand would be gratefully appreciated😇

  • OK, so if Diogenes' (researcher, not doctor) theory is correct - and I think a lot of us believe it is - absolutely nothing is happening to your thyroid. It has nothing to do with your thyroid.

    The immune system produces different antibodies for everything it attacks. So, all auto-immune diseases have their own antibody. The anti thyroid antibody you had tested was the TPOab, which only attacks the thyroid (put simply).

    But, there's another type of antibody that affects the TSH, and gives false results when the TSH is tested. So, those high results you had were false, and nothing to do with your thyroid. And nothing to do with how much levo you were taking. Just a 'mistake' - you could say - in the labs because of the TSH antibodies. You don't have to understand the difference, just accept that there are lots of different antibodies that do lots of different things.

    Now, above, Helvella has explained, in simple term, what has to be done to check on those antibodies. But, it shouldn't be down to you to find the lab to do the tests, that's what you have a doctor and an endo for. That's their job. Did you even tell your doctor about the TSH antibodies?

    And, the most important point of course, is that antibodies fluctuate. I'm sure you must have read that before. So, they were high for three of your tests, so that you got rediculously high readings, and your doctor panicked, and increased your levo by to much.

    So, the next test you had, the antibodies were low, and didn't affect the test, and because of the high dose of levo, the TSH test showed over-medication (absolutely NOT hyper, you are not hyper, you are just over-medicated).

    Your doctor has been extremely silly in all this. What he should have done before increasing your dose, was test your FT4 and FT3. And, if they had been in range, then it would have been obvious that there was something wrong with the TSH test. But, he didn't. Instead, he has sent you into a panic, and now you can't think straight. But, there's nothing to panic about. So, you've got to take a deep breath, and try to think about all this logically. The TSH isn't even a thyroid hormone. It is a pituitary hormone. And rarely reflects thyroid status.

    The TSH is a deeply flawed way of deciding dosing. And this is just one more proof if proof were needed. Doctors have got to start looking at the Frees, or this is the sort of thing that happens! :(

    So, do you understand better now? If it's still not clear, tell me. :)

  • greygoose many thanks for patiently explaining everything once more & finally I think I've got it☺I couldn't get my head around high TSH levels & equate that that had nothing to do with my thyroid & it certainly makes sense of such discrepancys in the blood tests & good news to be honest as thyroid actually working ok in the background. My gp is contacting endo he did try on Fri with no joy & that's getting chased up on Mon. I absolutely do not want to continue being over medicated especially with horrible symptoms so I will be getting message to gp about the frees that need tested. I would be much happier returning to 175mcgs daily as been that for 24 years years. When gp called me yesterday he advised reduce thyroxine from 225 to 200 & will retest in 8weeks but taking all the advise on this forum I'm not comfortable being over medicated unnecessarily for 8week period. Finally feel the penny's dropped & I can articulate to gp & endo what's been said & have a clear rationale around my concerns, my care & treatment pathway & the way forward..it's huge sense of relief as I'm so not a panicky anxious patient & feel but more in control..watch this space😊

  • I'm so glad to hear it! But l agree with you, 8 weeks is too long to wait for the next test. It should be six weeks. But minimum four weeks, given the circumstances. But you mustn't come down too quickly, because that would be equallybad for you. These things must be done slowly.

    Do let us know how you get on with your doctor and the endo next week. :)

  • Before any treatment, I went from subclinical Grade 1 hypo to overt hyper and then subclinical Grade 2 hypo, over the course of two years (definitions: ncbi.nlm.nih.gov/pmc/articl... )

    Thanks to the poor communications and feeling I was banging my head against a brick wall (going to GP over several years, with nothing done), I was lost to follow-up during the hyper stage. I'd like to know what my FT3 was when my legs had internal tremors, making me feel like I was experiencing an earth tremor.

    thyroidfairy -- from my own experience, I believe a serious injury and/or hospitalization can increase one's FT3 or its utilization. When hypo, any increase must be by improved/increased peripheral conversion unless, perhaps, our diseased thyroids manage to keep some capacity for emergencies.

  • Do you have Hashi's?

  • Aye, my GP eventually conceded that that's what I had, eight years after first being tested. My sister's TSH of 3.8 is where I was at the start, so I urge her to get tested every 3 to 6 months.

  • Well, that's why your FT3 went high, then. But, you didn't 'go hyper'. Hyper is where the gland is out of control and making too much hormone.

    The so-called hyper swing of Hashi's, is when cells from the gland are broken off and disgorge their hormone into the blood, so that T3 levels rise. But, the gland itself is not making too much hormone. It's not the same.

  • I can't be sure of the mechanism in my case, but I had six months of the stress of a parent with cachexia leading to end of life care at home, and a seemingly disinterested GP (in retrospect, not much could've be done).

    Then, a couple of months later, things seemed to have calmed down, but I had three tests with rising, above-range FT3 and positive for TPO antibodies, which I think may have been a hyper swing. Close to Christmas and difficult to get an appointment, I was lost to follow-up.

    A year later I'd half-coped with having builders in to deal with a subsidence claim, and slumped into hypo.

  • Doctors don't treat antibodies, anyway. They don't know how. They would just have lowered your dose, and then you would have had trouble getting it raised again, when you needed it.

  • Just to clarify, I was receiving no treatment during the events of my previous post. I read some patient experiences of Carbimazole, which swayed things.

    Then I got hospitalized with hypertension. TSH of 14.9 with note to GP: "You might want to look into this."

    The hospital experience triggered something -- peeing like a horse and rapid loss of oedema (not on a diuretic), and TSH dropped (5.3 a month later), which meant several months of begging before treatment started.

  • Dopamine issues have a lot to do with temperament. This first video touches on it but more on serotonin but if you go to #2, he discusses dopamine.

  • Hi thyroidfairy First of all. Sit, close your eyes and breathe.

    You're way too stressed and it's not helping.

    We're in a similar position, same age, both single mums struggling with our own health as well as trying to get the correct treatment for our children. I have Pernicious Anaemia and Hashimotos and recently lost my job because of it. I've been temping to keep the mortgage paid until I find another job so I completely understand the panic and the need to keep everything together when it all seems to be falling apart.

    Unfortunately there are no instant solutions to long term problems, it just doesn't work that way.

    I can't give a definitive answer as to why your TSH suddenly shot up to such a high level but it is coming back down so that's a positive.

    You can't suddenly become hyperthyroid after more than 20 years of being hypo but being over replaced on thyroid hormones can give symptoms that make it look like you've gone over active.

    You said in a previous post that 6 weeks ago your Dr increased your levo from 175 to 225, that's quite a big jump all in one go. It wouldn't have had an effect straightaway but 6 weeks down the line it has saturated your system and could be a contributing factor to the anxiety you are feeling now. You may need to reduce your dose slightly.

    Do you supplement b12 between your 3 monthly injections? If not, this could also be a source of your anxiety.

    3 monthly is never enough for anybody. I take 4 x 5000mcg solgar methylcobalimin sublinguals under the tongue every day between my 2 monthly injections and certainly know about it if I haven't.

    You're are getting your bloods checked in 4 days so at least you will be able to see where you are at.

    Obviously they will check TSH, but make sure they are also checking the actual thyroid hormones FT4 & FT3. They need to be in the top quarter of the range. Remember, always get a printed copy of the results and post them here when you have them.

    I know it's hard when you have the weight of the world on your shoulders but you've been signed off work sick because you are sick.

    Try to take the time to relax and breathe and de-stress. You can't be there for those that need you if you burn yourself out with worry.

  • Singoutloud your kind words were genuinely appreciated I did sit, close my eyes & breathe..sounds very simple but actually much needed advice so thank you.

    I'm sorry to hear your going through such a difficult time also. Its incredibly hard when we're ill plus all the added stresses we have. I know there are many leading a difficult life at the moment & many who will be dealing with harder obstacles. I hope you do manage to keep your home just what you don't need at any time but particularly when you are so ill.

    I am finding it difficult to try & understand what my thyroid is doing..the symptoms it has caused & continues to cause. I have been very lucky that although hypothyroid for 24yrs I never had any issue with being hyporthyroid had not given it a second thought until now as I said I know in that respect I have been incredibly lucky.

    I know that accounts for questions to this site that I have asked in a different way but ultimately these are the same questions., I'm just not getting it & struggling to understand. I am really trying to make sense of this. Like you I imagine I have to understand in order to make everything work. I am continually trying & I read the suggested sites folks are saying may help. One of the most frustrating symptoms is this level of brain fog I haven't experienced anything like this & it's really debilitating when you say something & see the confusion on peoples faces or get reminded that's the 4th time you've said the same thing!

    Your explanation why I'm experiencing symptoms normally associated with hyper really made sense.

    Thanks for all your advice & helping me make sense of all this in such a way I don't feel a total idiot..it hasn't always been the case. I will supplement b12 between injections. I got my Vitb12 injection today and been so incredibly tired hopefully this will start to ease off the tiredness especially supplementing with extra between injections.

    Thank you for your kindness and understanding

  • I had over a year after being diagnosed with an underactive thyroid taking various doses of T4 followed by T3 feeling worse and worse.

    I weaned myself off all medication (supervised by my endocrinologist) and am now in week 6 taking nothing. My symptoms were definitely much more in line with hyperthyroidism than hypothyroidism - lost weight, diarrhoea, very active, always hungry, etc - i.e. the opposite of hypo.

    My TSH is still quite high (11.04) but my FT3 is within range and I am generally feeling pretty well back to normal. Interestingly my TSH has gone down from 14.91 to 11.04 since being off the pills.

    I think therefore one should listen to ones own body and not necessarily to the GP who just looks at the blood test results and works off them without taking symptoms into consideration.

    Anyone else had a similar experience?

  • In my opinion you are taking too much medication. It happened to me in the beginning when I was taking too much T3. I wad restless, agitated, irritated by the smallest thing... with no patiene at all. I reduced T3 only by 10 mg and everything disappeared!! You should have gone to take 200, not 225 of T4. Sometimes a little increase can cause a whole lot of symptoms. A lot of T4 gets converted into T3, so it's important to get the T4 absolutely right too. I perfectly understood what you said about going from hypo to hypet, I almost felt the same. Your blood test will tell.

  • Hi thyroidfairy

    I'm no expert but I had the same thing happen to me. I called it going hyperthyroid also cause I felt just like you did or do......all jittery and what you said. My problem kind of began this last March. My TSH read high to 8.9 and my doctor wanted to up my 100 mcg Levothyroxine dosage that I'd been taking for years...to 125 mcg. I told her that if I'd take this higher dosage that I would probably go jump out the window and I also told her that I'd already lowered my dosage to half my initial dosage by cutting the tablet in half. I was not doing anything terrible as a time prior to this I had thyroditis virus and she had told me that I could have cut my dosage to half. We had a long talk and she suggested that I keep going as such 50mcg....and if I begin gaining weight and constipation, to return to regular 100mcg or work up to it if needed. I continued taking 50mcg and even lowered my dosage to 25mcg. Last app. my TSH read 6.1iu. and she told me I had improved and to continue with 25 mcg and I am still on this same dosage for months now.....It's hard to not know or to have to wait but since I feel so much better, I'll be continuing on taking 25 mcg dosage. I hope this helps....

  • Lily288 thanks it's good to hear from you. I appreciate there will be huge numbers of folks who have our symptoms but feels so much better hearing from someone who's actually been there & done that....i've got everything crossed TSH be heading in right direction as been a rough time when 180 to 77 down

  • thyroudfairy

    I don't understand your numbers but yes, your numbers sound like it dropped a lot.. Here, it is counted or read as milli-Internatinal Units. And the normal range is 0.5 to 3.0IU. Above 0.5 iu means Hypothyroidism... and since mine read 8.9iu that's why my doctor wanted to up my dosage but I felt more hyper than hypo so no way was I accepting a higher levothyroxine dosage. lol

    I don't understand it and neither did my doctor but I'll write again after my next test. God bless. 😍

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