Thank you for your help! I have Hashimotos and have been having a Hyperthyoid flare up for the past 3 months..heart racing, diarrhea,

trembling, swollen thyroid etc... but the hypo symptoms have not subsided like Myxedema and full body swelling. My eyes are puffy and i have blurred vision. I have been under treated for my Hypo symptoms for the whole 3 years that i have had this, been through 4 Endo's and seen numerous other doctors too, no one recognizes the symptoms of this disease, and now i'm going it on my own, got off all t4 5 weeks ago [my last labs showed ft4 underange and rt3 at 30%] and started t3 only..i thought it would stop the attack on my thyroid, by getting meds to my cells, but it may be making the hyper symptoms worse. How on earth do i adjust my t3 during this hyper phase? Going off all thyroid meds is not a safe thing to do. I'm looking into getting LDN, because thyroid meds do not get to my cells, my rt3 is always high, been ill with hyper and hypo symptoms that are very severe and have been homebound since 2009.

I wanted to add, that I have read Dr. John Lowe's and Paul Robinson's books and was planning on using them for guidance. The hyper symptoms were well on their way before i started t3 only.

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  • It can take 10/14 weeks after stopping Levothyroxine for rT3 to clear. How much T3 are you taking and do you have recent blood results with lab ref ranges you can post?

    Have you tried reducing your T3 to see if your hyper symptoms improve?

  • Thank you for replying.

    I cant locate my last labs but I know that the ft4 was underange, the rt3 was near the bottom at 30% of the range, ft3 was at 3.7 which was the upper 2/3, this was on 50 t4 and 36 t3. They were done about 7 weeks ago, right before i went on t3 only. I was having hyper symptoms at the time of the labs, from this Hashi's hyper flare up. I have been off all t4 for 5 weeks now. I have both hypo and hyper symptoms which is confusing and really terrifying. My eyeballs were bouncing, my heart went to 133 bpm today. I have a Beta Blocker to slow it down and help with tremors. I had worked my way up to 75 t3 and feel it made things worse [maybe] and have only taken 50 at this point today. I have been at this dose and lower and on nothing for a few days and my symptoms still stay hyper. My thyroid swells and then i get another terrible episode, my thyroid shrinks, swells again and the hyper starts again. My mistake was trying dessiccated thyroid again, which apparently causes me to have an attack on my thyroid. I will not be getting labs again, as they are not reliable for me as an indicator for dosing.

  • I sympathise with your symptoms having experienced spiralling Hashi's for a year prior to diagnosis.

    It can take up to 8 weeks for T4 to completely clear your system and as I said above 10/14 weeks to clear rT3 after stopping T4.

    50mcg T4 + 35mcg T3 is equivalent to 155mcg T4. 75mcg T3 is equivalent to 225mcg T3. Do you think you may have increased too quickly and overdone it?

    A poster was advised by Dr.P to limit her T3 to 5mg daily for some weeks to clear her rT3 but she was struggling to cope with hypo symptoms during this regime. Another article, from Paul Robinson's site or STTM, advised that large doses of T3 were needed to 'nudge' the FT3 into the receptor cells temporarily vacated by rT3. So, conflicting advise there :( You may find some help in the links below:

    healthunlocked.com/search/rT3

    healthunlocked.com/search/R...

    Labs can be a useful guide to dosing in addition to resolution of symptoms and will indicate when you are over or under medicated.

  • Thanks again! Hashimotos is terrible isn't it?

    I really don't think it's an overmedication issue. My rt3 drops rapidly when lowering my dose of t4 meds, so never understood why they say it takes so long to clear. Maybe someone on t3 only will see my post.

    When on t3 only you cannot go by labs, only symptoms, which is what is causing my issue with dosing.

  • You need to get Vitamin b12 ,homocysteine folate levels attended.I had hypo taking thyroxine went hyper stopped thyroxine still having tremors,ringing in ears,pins & needles In hands ,sweating,breathless .fatigued.U/s showed thyroiditis .Diagnosed on symptons b12 290 with B12 defeciency.Havent taken Thyroid med for 13 mths now levels ok.On methyl b12 last test 495 feel so much better.

  • hello Marylyn

    I read your post with interest as i was lead to believe people with this thyroid problem were either hypo or hyper, can you swing from one to the other?

    as i seem to be having some of the hyper symptoms , but also have the pins and needles in hands,

    really bad ringing in my ears,, im on 50 mg levo, and am sometimes constipated, sometimes runny tummy.. always tired but not being able to sleep and going in to a coma for about one hour where i go really cold,,,have tremors all day long and felt really dizzy and thought id throw up,..

    is there an alternative to levo as ive felt dreadful on it?

    Many thanks

    Astro

    ps im glad you feel better, this thing is ghastly,,

  • Hi astroscopesuk,

    I hope you don't mind me answering your post too.

    Yes, having hyper symptoms is common with Hashimotos. You can get a combination of both hyper and hypo at the same time. This has been what has happened to me, made worse by Levo.

    So many people just don't do well on t4 meds like Levo. Levo is a t4 only med. T4 is a pro-hormone, which your body has to convert to the usable form, which is t3. Many people, especially with Hashi's don't convert the t4 well, due to inflammation, in part. I don't convert well at all. This is why i have switched to a medication that my body doesn't have to convert, which is t3 only, such as Cytomel. I have the same symptoms as you do and many more. Sometimes i feel like i have electric current running through my body. I think some of it might just be from having the antibodies and not just being undermedicated. You sure sound like you have a combination of symptoms, hyper and hypo both.

    There are t4 only meds like you are on now, pig thyroid, which so many swear by, which is also called desiccated thyroid, like Armour and Erfa, NP, some people take Levo and Cytomel together etc.. Maybe you could Google stopthethyroidmaddness for info. There is so much good information there. They are very partial to dessicated, but it is like poison for me.

    Maybe it would be a good idea to get free t4, free t3, reverse t3 testing done, to see if you are converting your t4 only meds correctly. I believe you are not on enough medication.

    I'm so sorry that you are going through this!

  • Dear Faith63

    Thank you for replying at this early hour

    I am very grateful,of course i don't mind, its wonderful to have any help at all right now.

    I am having a blood test on Friday and i need to ask the gp to ask for the correct things ,

    they only seem to go for the minimal blood tests.

    I am going nuts with this as i. feel dreadful 24/7. I have a month to get better before my sick cert runs out, I don't want to be off work forever , but i am not recovering from this at all. At the moment i seem unable to move fast, also due to the bursitis in my hip, but my whole body seems to be messing up,I don't know my body any more. I am used to feeling really healthy, running about doing work and looking after my family and fella(whos awaiting a hip operation), and doing shopping for my mum, fella and my family , and now I cant do a thing. I am having physio (hydro) for my hip and when i do that i cant move for the next two days. I really feel as though the 50 mg levo is poison and its making me worse.. I am trying desperately to find something feel better, I sweat and shake and ache and have ringing in my ears,have pins and needles and cant sleep, pee all through the night ,have heart flutters, have put on two stone, have confusion, its driving me completely nuts..How on earth does eveyone suffering thyroid problems cope!!!!

    I know life is precious, but this condition just after i had the all clear from breast cancer is the pits and some. I empathise completely with every soul on this site,REALLY..

    I have looked at stop the madness, i will look again, but i am trying to get my head round this t3, t4 and conversion thing as its very confusing what the thyroid does and doesn't do and im really not a doctor but i have a medical interest,as this maddening condition makes it so.

    Thankyou

    Kind regards

    Astro

  • Since i'm in the US, it's 11 at night, so not horribly late here. I will have to get back to you tomorrow. My back hurts from hunching over the computer for hours! I really have to stop this habit! Hang in there. I hope you are able to get some sleep.

  • Hello Maryln,

    I have had my b12 levels checked and they are over range. Homocysteine levels are usually elevated when hypothyroid which i still am, with hyper symptoms add since the flare up.

    Do you have Hashimotos then? If so, the antibodies will eventually destroy your thyroid. I went hyper first, then normal, then hypothyroid and have never been properly medicated.

  • I'm so glad that you are feeling better and that the b12 helped you. I believe that b12 deficiency and anemia's are common with Hashi's. I wish i could get off these meds!

  • It was a pharmacist that told me to cease Eutroxsig (thyroxine) because I was hyper not dr as they told me TSH normal.I had thyroiditis from u/s also high Bp ,low cortisol,liver & gut inflammation.After month off med Bp decreased.Its now 13mths since I got ill Thyroid tests have been normal.I worked it out myself I have Hashs as now if I have fish or High iodine foods hyper symptons are back.I also found gluten free,no alcohol,caffeine or processed foods helped heaps.How high are your be b12 my dr wants mine around 1000.google b12defeciency treatment protocol most drs ignore symptons as well as B12 levels which actually abnormal if pts have neuro symptons.

  • My gut is bad too, bp gets high, didn't have this until the hypo symptoms showed up. gone gluten free and nothing helps. I have been severely under treated for my low thyroid since this started. My cortisol is not right because of it. I'm hoping the the right thyroid meds bring it up. I take licorice to help the cortisol that i do have, stay in my system longer. I don't go by labs for thyroid anymore. My symptoms were of low thyroid for quite awhile, now hyper and hypo both. I will be getting a drug that is supposed to help the immune system and stop the hyper episodes and it will help with the inflammation by lowering the antibodies to normal..if it works like it should.

    My b12 was 1200.

  • I'm sorry that i couldn't get back to you sooner.

    I have no doubt that this Bursitis is really a symptom of your under treated Hypothyroid. Fluid accumulates around the joints when hypo. Please google it. No amount of therapy is gong to help. My hips hurt off and on and all my pain has gone away when i was properly treated for a few months, then all my t4 went to rt3 and wasn't being used by my body and i went down hill again. 1 time my lower back went out and i couldn't get off the floor for days, i even went to a doctor and he asked about my thyroid. It stopped when i raised my dose.

    50 t4 could make you feel worse than you did before treatment. It is such a low dose, but it will lower your TSH, which means your Pituitary isn't signaling your Thyroid to produce more hormone, which you need. With Hashi's it is often likely that t4 won't be converted into the active form which is t3. Many people only find relief of pain when they add t3 meds to the mix. You are terribly undermedicated and from what i understand, in the UK, it is nearly impossible to get dessiccated or t3 there. If, i were you, i would not waste more years of your life and find a doctor that does this right. I think you should ask on this forum for a good Thyroid doc who uses t3 and does the right tests. But, just because the tests look normal, doesn't mean you are properly medicated. You dose by eleimantion of symptoms. You may have to pay for this doctor yourself, but it will be well worth it. You can also order the meds yourself without a prescription, if needed. For me dessiccated makes my Hashi's worse, but many swear by it. You are going to have to learn all that you can, so you can get well. The other thing is that doctors do not address the fact that this is an autoimmune disease and this complicates things and makes more symptoms for some. The hyper symptoms such as you have may be because your body is actively attacking your thyroid right now..this is happening to me and it makes treating the hypo symptoms nearly impossible, The flare up of this disease is making my pain and swelling worse, but when i raise my meds, it makes the hyper symptoms worse. There are things like Selenium which is supposed to lower antibodies and other anti inflammatory's like fish oil etc.. but they have not helped me. There is a drug called low dose naltrexone, which is supposed to balance your immune system, lower anti bodies and stop this attack.

    Have you been taking any supplements?

    I don't know my body anymore either. I also gained 2 stone [28lbs] in 3 months, when this hit me. My life has come to a halt and the hyper symptoms are so frightening. I was hyper in 2009, which now i know what caused my symptoms, hypo in 2010 til now. I was not diagnosed until 2011 and have never had the right treatment or improved much. I have been mostly home bound since 2009. I will be getting the drug that i mentioned above and pray it works. My symptoms are terrible and i rarely leave the house. My eyes are effected, blurry and puffy and my brain isn't getting enough blood..which was tested. I believe it is swollen. Do you have this lumpy, soft fat all over? It is Myxedema. Go to youtube and look up the hypothyroid skin pinch test. It will show a woman and her husband and then her daughter. See if you have Myxedema.

    Hang in there. There is much you can do to improve you situation. With some people it takes a long time to figure it out. We are like soldiers going to battle.

    Hope to hear from you again.

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