Not doing well

So good morning my dears. Just wanted to check in. For anyone who does not follow my posts, i had my endo agree upon cytomel for me and she prescribed 5mcg daily 1x. i am extremely sensitive to meds so i cut it into quarters and moved up to a quarter in the morning and then quarter in the afternoon. At first after my body adjusted i felt more energy, Almost 3 wks in i started gaining weight because she also dropped my synthroid dose back down. I seem to not tolerate the whole 5mcg at one time so i kept it at 2.5 mcg a day. So i had energy to exercise daily again but weight started coming again. Plus i constantly felt up and down like energy high and then a few hrs later crash before the next cytomel quarter. Head aches too started. I am wondering if i should just go back and put my synthroid dose back again where it was of alternating 50/75 mcg and stop the T3???? Wait and see what my labs say in a month or 6 wks then if i am not at 1 for tsh and still feeling crummy then maybe i need another increase in synthroid to a full 75. Honestly that is the only time i had a low TSH was on 75 mcg. She was reluctant to increase me a full 25mcg last time because i went hyper with the first endo. I feel now though that maybe that was only because I was sick for so long and unmedicated and he did not gradually work me up like I thought he should. Especially me being so sensitive. he probably should have gone 25, then 50, then 75. I thought T3 would be the answer for me but now not so sure. What do you all think? I am so sick of being not optimal!!!!

17 Replies

  • No, you should put the levo back up to where it was and keep the T3 - IMHO. The dose he prescribed wasn't high enough to warrant lowering the levo, and you're not even taking the full dose. So, not surprised you're putting on weight again.

    But exercising won't help! It will probably make it worse, even. You don't have enough T3 in you to exercise because that uses up your T3 at an alarming rate. You can't replace it quick enough, so you get more hypo - and put on more weight!

  • thanks Greygoose I can always count on you. When they literally just raised the synthroid and then told me to lower it again even though they were only prescribing 5mcg of T3 I thought why???? And then to top it off like you said i cannot even take the whole pill!!!! I am raising it to the 50/75 to see how do and then i will keep the 2.5 cytomel broken twice a day!!! i need to feel better!!!! I hate these drs..... i hate this disease.

  • Totally agree with you! They are incapable of thinking for themselves or using logic. It's usual to lower the levo when people are taking a highish dose, and they prescribe a decent amount of T3. But when you're on a starter dose of levo, and they prescribe a piddling dose of T3, common sense should tell you not to lower the levo! They're just robots, really.

  • That's fiction about not taking the whole pill. I take my one dose daily. This is the reason it was advised by Dr Lowe (RIP) as his fibro patients took T3 and he himself took 150mcg in the middle of the night (thyroid hormone resistant). Your dose of 75mcg is very small and the effect of 5mcg of T3 is between 15mcg/ 20mcg levo. Excerpt:

    Now, to address your rheumatologist’s assertion that T3 is dangerous, and his implication that amitriptyline is not. I think the best way to reply to him is to quote publications that are available to him. In the USA, when patients get their prescriptions filled for T3 (usually the brand Cytomel), the pharmacist usually gives them a leaflet on the product. The leaflet contains the following statement:

    "NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with the proper use of this medicine." (Medi-Span, Inc.: Database Version 97.2. Data © 1997.)

    Third, the leaflet on Cytomel pharmacies give patients when they fill their prescriptions states, "POSSIBLE SIDE EFFECTS: NO COMMON SIDE EFFECTS HAVE BEEN REPORTED with proper use of this medication." This information is accurate—when plain, full-strength, one-time-per-day doses of T3 are used properly, there are no adverse effects. The only adverse effects occur when a patient takes a dosage that for her is excessive. With Cytomel, if overstimulation occurs, it can be stopped with one or two small doses of propranolol. Or the patient can simply reduce her dosage of Cytomel the next time she takes it. I want to emphasize, however, that when our protocol is used properly, there is no overstimulation to be avoided by using timed-release T3. The protocol has safeguards against adverse effects.

    And finally, why do I specify that the typical patient use one full dose of non-timed-release Cytomel for life? Because extensive testing has shown that this is safe, effective, and most economical—when used within the context of our entire protocol.

    This explanation may be over our heads a little bit but I've put in italics that which might be easier to absorb:-

    Dr. Lowe: The short time that T3 is in the circulating blood isn’t the limit of its beneficial effects on the body. When T3 binds to T3-receptors on genes, the binding regulates the transcription of mRNAs, and the mRNAs are later translated into proteins. The transcription and translation initiated by the binding of T3 to T3-receptors occur in waves, and these waves far outlast the T3 that started them at the chromosomes. Moreover, the newly synthesized proteins themselves far outlast the transcription and translation.

    "As a result, a single dose of T3 will be long gone from the patient's system before he or she experiences most of the benefits of that dose—a molecular and metabolic yield that may smoothly spread out over one to three days. The "rocky road"

  • My Cytomel is actually the generic and i do not know whether it is time released or not. All i know is how i feel from about an hour after i take it only lasts a few hrs and then I crash. I appreciate your response Shaws but that was very over my head if i am being honest. I have heard from way more hashi's patients that they do better taking their T3 in multiple doses whether it be 2 or 4xs a day. Now i think i know why. Some people cannot handle T3 or not much. And then there is the crash feeling. Me myself gave up a lot of things over the yrs and caffeine was one of them. I think this is why i feel the tiredness so much as opposed to others! Either i have more than hashi's and hypothyroidism causing the lack of energy or i am a very different case. I have had people with a TSH 10xs higher than mine that didn't have such extreme symptoms. Now i understand why some drink coffee all day......... Something i can never get back to.

  • There was one T3 that gave me symptoms and I reported it as did some others on this forum, but I'm fine now.

    Dr Lowe, took T3 himself, as did his patients who were thyroid hormone resistant.

    I do know some members do split their doses. I cannot understand how they can then finally reach a dose that removes their symptoms and it must be awkward all day waiting for a slump and hoping it wont happen.

    Dr Lowe took no blood tests after the initial ones and the symptoms of the patient were his priority. He said that in a few hours T3 is within the cells and that their work then began and lasts between 1 and 3 days. I myself can miss a day's dose but of course that's rare occasion for me.

    You also have hashi's and I hypo, so at times you are going to have a rush of antibodies so I do feel sorry for you. It's bad enough having one thing to contend with, never mind antibodies as well.

    I hope you find a solution.

  • shows what do you have? hypothyroidism? If so what has caused yours?

  • No one has ever told me and as far as I know I've not had antibodies tested. I don't think I have hashi's as I didn't have the swings that hashi's causes. :)

  • They should have tested your antibodies for sure so you know the cause and know better how to treat yourself. Maybe you are like my best friend who just had hers completely stop working. She does have hashi's though so i Don't know. She just never had most of the symptoms but her antibodies were 4,000 when diagnosed and her TSH 200.

  • With a TSH that high she must have suffered terribly.

    I had clear clinical symptoms except that none of the doctors/specialists/cardiac department ever took a Thyroid Function Test when I first complained with a very common symptom and over several years I became more and more unwell.

    I'm glad to say I'm well now and have no symptoms. It was a long search though, like many on the forum.

  • That is absolutely horrible. I too was sick for a long time and no one, i mean no one ever even thought to test a full thyroid panel. This went on for many yrs and when my TSH only was put on a annual check ups labs my TSh was always within "normal range" even though normal was up to 5!!!! i had no idea about thyroid disease and then even when i did find out it was in the family and the symptoms and signs (which i had any and all) i looked to the drs who said you're fine and in range and they kept putting me on anxiety and depression meds. I was even told new mothers are tired!!! When i finally started doing more research and decided no! this is what's wrong with me...... it was terrible. I got copies of test and my vit D was extremely low, insufficient actually, iron very low and others no where near optimal. And my TSH was high "in range" for yrs. It took one "nurse" to listen to me and test my TSH and Free T4. It showed very low T4 and even higher TSH. At that point I was already supplementing my nutrients. At that point I finally had something to get referrals for an endo! I am still not stable!!! A year after being diagnosed with antibodies and finding out both antibodies were very high. How long did it take for you to get well???

  • You know there's something badly wrong with you as does your immediate family but the fault lies at the foot of the Guidelines of the BTA and RCoP for the guidelines the issued (still believe they keep to the 10 for TSH before prescribing), whilst ignoring the very disabling clinical symptoms we are suffering.

    Like you they are given any other medication for the symptom instead of a trial of thyroid hormones even if TSH is under 10 as most other countries prescribe when the TSH is 3+.

    As far as I know I had no antibodies.

    We are left floundering in illhealth and it's terrible really in what is supposed to be a 'modern' country, but backwards with regard to thyroid hormones.

    Dr Peatfield was hounded by the GMC for prescribing patients as he was taught as a student (before blood tests and levo) as were all doctors at that period. The stress was too much to bear and he resigned but still assists patients privately but he himself is very unwell at present.

    Dr Skinner was another who, finally, had a stroke. His patients (I was one) believed it was due to the sress he had to go through as he appeared before the GMC about seven times, I believe, and it certainly wasn't his patients complaining as he saved many, but the fact that he prescribed due to symptoms and the fact he was not an Endocrinologist but a Virologist.

    It took me about five years to finally feel well. I did improve after about 2 years when T3 was added to T4 and I was relieved about that. It didn't stop the palps but it was an improvement. I tried NDT and then GP said he'd prescribe T3 as I had many trips to the A&E and since I've been on T3 my heart is becalmed and I've not been to the A&E Dept since.

    Relief is our uppermost sensation when we are finally diagnosed and then if not improving on levo or maybe getting new symptoms we want the ability to trial an alternative after a reasonable time on levo but are prevented because False Statements have been made by the BTA about NDT, whilst many thousands have recovered their health with NDT or T3 or T3/T4 so we should have options offered.

    I do hope you feel better soon and, another thing, many doctors stop increasing when the TSH falls within a certain range when it should be when TSH is 1 or lower.

    I, like you, didn't expect to have to thank the internet for a source of information, lifesaving information for many. That's when I found and am now a member and now the forum - HUThyroiduk

  • I would love to become more involved with this site Shaws. I have done so much countless research myself, have a close friend with graves and a few friends i met over the yrs with hashi's. I also know people with just plain old thyroid disease with little known like if it was auto immune related. I was undiagnosed and misdiagnosed for a very long time. I lost pregnancies and even had my first born son pass away before he was a month old which i feel had something to do with my conditions and he was born prematurely. I have been through so much and am fighting to feel well. Besides getting myself better....... I want to be an advocate for Thyroid advocate for auto immunity!!!!! I need to find a way! One of m y children is currently going through the diagnoses process here for auto immune disease. I have thought for months onto find a way to write a book about my experiences of misdiagnoses. I was told by quite a few my experiences would definitely help others.

  • I'm sorry you had miscarriages and losing your little baby is awful particularly if you'd been treated optimally it may not have happened. But we cannot look back.

    Some women cannot get pregnant and don't know the reason and others miscarry.

    I thought this might be informative for you. The fact that hypo involves head-to-toe which I don't think is recognised by many doctors/Endos.

  • I was looking at old blood test results last night and it did state that I had 'Acquired Hypothyroidiism'. I'd never heard of that before and it must mean ordinary hypo without antibodies.

  • That is different! Never heard of it as well. However my mom has hypothyroidism and they stated hers was "just hypothyroidism" but i kind of wondered if they just didn't test her antibodies???! This site has answered questions for me that i have not found on the internet or in books and i am forever grateful. Maybe one day I will be "better" and thank you.

  • I don't know where you live but you could, if you have time and wish to, set up a local TUK. Some members meet in a particular cafe or someone's home just to have a moan and support.

    If you are interested you could email

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