I wrote here 4 months ago that I would have to stop both Tiromel & Metavive as my BP went haywire. I tried to stop metavive (having stopped T3) however I became too ill to last more than about 3 days without. My TSH feedback look is crippled, & cortisol in the gutter + I cannot produce any T4 - for whatever reason. I have been bed bound since I stopped T3.
When my T3 was slightly over range at beginning of the year, as revealed by private overseas (UK) blood tests & also via final Endocrinology arranged blood test - during that brief period when my FT3 was optimal - I was able to converse with Endo (more or less) & started to tackle the mountain of chores that had piled up. But the Endo told me to stop the T3 & continue to take Metavive, going by symptoms, not blood tests, he also stated that the finger prick tests were invalid/don't work, & that if I wanted any more blood tests I would have to pay GP to do them. GP told me she could not do them, so I wasted my £ & so I asked for propranolol for night time adrenaline which kept me awake. My eyes have deteriorated, I had no way of knowing if the Graves ophthalmopathy had returned or if I had developed Sjorgrens, so I felt that as she could not test me for TRab, TSI, or ANA, I would have to take precautions in case of a return of graves.
I stopped all meds, & BP slowly went down, but I had to slowly introduce Metavive again, as I became very hypo. I had 2 finger prick tests since, TSH still almost non existent, & latest FT3 around 60%, sounds perfect don't it? but I am still lying in bed, the sun has been shining all day, after ages of cloud & rain, & all I can think about is getting enough motivation to get out of bed so as to put my affairs in order.
Exercise would help, but I'm too depressed, & I have this weird wired agitation going on. Is it the Metavive maybe?
I don't think the thyroid hormones are entering the cells, just swimming around my veins. I have never been so brain fogged or depressed, was always very resilient & happy-go-lucky, & never lazy. It's just not like me. I have solved the low magnesium with Mg threonate, & have Mg glycinate on the way along with valerian, I'm also now taking methyl B12,6 & folate, as well as a host of other tral supplements, so its not nutritional.
Could the new Metavive be activating cytokines via the nucleotides, or maybe it's the lack of T4? but all I know is I was not depressed, anxious, or lazy when my T3 AND T4 were more or less balanced while on T3.
I should add that I have had much exposure to endocrine disrupting chemicals, some of which is ongoing, i.e contaminated water, mould, insecticide, plastics, & teflon. My theory is that these toxins may have damaged me permanently, & possibly contributed to the brain damage & stress - thereby preventing entry of hormones & nutrients into the cells, (especially brain cells).
The supplements (along with occasional zopiclone) have helped to prolong the sleep phase so up to 6 hrs sleep on a good night, so it's not the fatigue. The only thing I have to look forward to is a mammogram on the 22nd, just seeing a human face, & getting a few yards of walking is now the highlight of the year! how pathetic is that?
If anyone has had similar experiences with (possibly) metavive as culprit? please could you share? Sorry about the long ramble, but It's so complicated when you don't live in the UK or USA. I have amended the intro to my profile as detailed as possible. Thank you for taking the trouble to read!
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Jenny583
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I had to stop the Tiromel about 6 months ago. I had been slowly cutting out the T3, but suddenly went over range T3 @ (9) - range 3.1-6.8 - just as I had cut down to 1/2 the T3 that I had titrated up to. My intention was to move over entirely to Metavive, as Met was all I could buy. I was on 160mg metavive IV (late last year,) also 25mcg Tiromel. private overseas tests every 7-8 weeks. When BP went high I cut out everything for 3-4 days. Then I reintroduced metavive at 140mg, test on 11-5-21 = 4.4 i.e 35%. Then I slowly increased metavive to 180mg, tested at 5.4 on 5-7-21. Then I increased to 200, but I feel extremely depressed so I want to slowly go back down to 160mg. I don't want to buy any more metavive.
I have been on metavive for 2 years. I am still on 200mg, (last 2 months)I tried to increase, but feel too wired. I increased every time I got worse. I find it difficult to split the capsules, my eyesight has deteriorated. I felt great when taking T3, but I would rather be on nothing at all than be on metavive, but the Endo tells me I have to take it. GP last year told me to stop metavive & take just 5mcg of self sourced Tiromel, but I could only manage about 3 days on that dose of tiromel & had to resume the metavive. I havnt really stopped metavive for more than a week, I crashed bigtime.
For some reason that wasn't clear, you wrote ".... and, your T3 does not need to be increased..... I agree. This means that I will have to gradually cut out all thyroid pills. I will have to anyway, as I cannot obtain anymore, just 120 days on current dose left...."
....but you didn't explain why you thought you should reduce anything. ? except that you no longer had a non prescription source of T3 tiromel ?
8/1/2021 - TSH = < 0.01, FT4 = 19.2, FT3 = 9 ; "This last test I had cut down to 18.5 ................................................................................................mcg Metavive & yet showed higher .................................................................................................FT3 & FT4" presumably you meant to write you'd reduced tiromel T3 to 18.5mcg, not metavive ?
Related Tagshealthunlocked.com/thyroidu... " I have to transition over to metavive only, (as I can no longer buy T3) - I dabbled with pregnelolone in small doses for a short while in the hope that that would help HPA axis. I also just finished a half course of Nasonex which is steroid, as I had bad asthma. My temperature is down, which is odd."
........................ i think perhaps you were on 12 mcg T3 +2 metavive at this blood test, due to this comment " when I was on double the dose - (MMH test )in November my tests were in range ... 7 weeks later,on another FP test & on a further dose reduction they were then over range... local phlebotomy test that I had last week on half the dose of 1st test Now I'm no expert - but, shouldn't my T3 levels be well within range & dropping? ..."
"I will now reduce the Tiromel to 6mg & continue with the 160MG of Metavive",
12/3/21 "Last night I took my BP, the systolic was high & pulse 105. I have propranolol for emergencies, so I took one. I felt much better "
26/3/21 "I cannot get help for what I believe is a return of GD. Jenny583 in Graves Disease Support " healthunlocked.com/graves-d....
27/3/21 healthunlocked.com/thyroidu... "Should I stop taking the Metavive ? I had the worst night of nocturnal hypertension ever. I took 60 mg of propranolol that I had left over from when I was last in that position, & it took 2 hours to get my BP down to 145/83? only got about 3 hrs sleep - if that. It is now 139/83. I am scared to take any metavive in case my GD is back. My symptoms feel just like thyrotoxicosis..."
" When BP went high I cut out everything for 3-4 days.
Then I reintroduced metavive at 140mg, test on 11-5-21 = 4.4 i.e 35%.
Then I slowly increased metavive to 180mg, tested at 5.4 on 5-7-21. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
11/5/2021 - TSH = <0.02, FT4 = 12.5, FT3 = 4.4 "140mg ... metavive are 80mcg each ? so do you mean 120mcg ? ie 1 and a half capsules.
5/7/2021 - TSH = < 0.01, FT4 = 14.7, FT3 = 5.4 "increased to 180mg" ?? same question .. how do you get 180 mcg ?.... do you mean 160mcg ? ie 2 capsules
today you wrote "Then I increased to 200, but I feel extremely depressed so I want to slowly go back down to 160mg. I don't want to buy any more metavive. I have been on metavive for 2 years. I am still on 200mg, (last 2 months)I tried to increase, but feel too wired. I increased every time I got worse. I find it difficult to split the capsules",....
OK ,it gets a bit confused again. How long have you been on 200mcg metavive, ? ie. 2 and a half, (80mcg) capsules ?.... presumably only a few days, since previous test was only 10 days ago 5/7/21
p.s another post on HU say's you just bought lots of supplements to help insomnia.. so check they don't interfere with thyroid hormones, and mention if you are taking any ... or else it will confuse what advice people give you next.
I've read a lot of your old replies and you seem to have been saying all along that you were previously able to function on 2x metavive + some T3 ,much better than you have this year.
You had a period of unexplained high T3 for 2 or 3 months in jan/feb/ march ,despite reducing T3 dose, but before that you were OK. ....and your T3 is not going unexpectedly high any more , so whatever the cause was i don't think it's a full on graves relapse.
I've had a similar thing happen .....a period of fT4 going over top of range on same dose , and going UP even though i reduced Levo dose..... it happened over a period of possibly 6-9 months , then seems to have stopped and fT4 result lowered .. even though i'd increased Levo slightly again by that point .
Of course, my GP just took the easy route and suggested i'd been taking more levo than prescribed , (it's much easier to suspect us, than be curious and ask "how/why is that happening ? ) .. but it wasn't me ...my doses and blood test dose timings were all very careful, and honest... as it seems yours were.
I don't have a history of graves, i do have TPOab ( i suppose i could have some TRab but i'll probably never know).. anyway the point is .. whatever was causing your fT3 to go over.....it doesn't look like graves is causing an active problem for you at the moment ..... your blood results on metavive since you started back on it in ?April are now behaving as you'd expect, (even if you do feel rubbish)
By the way.... why did you start reducing tiromel after November ? ..... was it just because you don't know where to get any more from? .. or was it the Endo telling you to reduce , because of low TSH ? or was it your choice, did you have symptoms of overmedication ?
It's just that you've often said you were much better last year before you started lowering T3.. so i wondered why you did it.
( do you need to see him anyway ? .. since it seems like you've got to buy your own hormones and your own blood tests.. what do you need him for ? )
Thank you tatty for going to all that trouble, Those links ( now that I can see them) are extremely useful! I didn't expect a reply, & my eyes , mashed potato brain & laptop don't allow me to recall or see what I was up to this year - never mind last year! In answer to the following questions including this 1st one....
....tatty, you recall the following - I will do my best to answer.....
"I can no longer recall which dose relates to which test, sorry, too confused by it all."
I plucked some missing bits from your previous posts ... hopefully this helps everyone see the time line a bit easier ;
19/11/2020 - TSH = <0.01, FT4 = 13.9 , FT3 = 6.2 ; this was 25mcgT3 +2x max dose ........................................................................................................bovine metavive. (recently ? ........................................................................................................changed from porcine x2)
healthunlocked.com/thyroidu...
For some reason that wasn't clear, you wrote ".... and, your T3 does not need to be increased..... I agree. This means that I will have to gradually cut out all thyroid pills. I will have to anyway, as I cannot obtain anymore, just 120 days on current dose left...."
....but you didn't explain why you thought you should reduce anything. ? except that you no longer had a non prescription source of T3 tiromel ?"
tatty.....Just to be clear, 1. I never had prescription T3, I bought them from internet site. 2. I was taking 2 max dose capsules of metavive last year, at one point I tried porcine, and then bovine, as I had to choose 6 of 1 or the other so as to get the bulk discount & as I am sensitive to additives I decided to opt for the bovine which contains 65mg & only 15mg of nucleotides per 80mg capsule - unlike the porcine.
As to the second point, It appears that I was replying to Shield-maiden...
..."It was only when I went over range T3 at 9 that I briefly stopped metavive as the bovine metavive is much stronger than the porcine I had gone over range, & needed to clearout the excess that's when I dropped 25% on previous dose"....
Shield wrote...
"but, to me, your T4 could do with being a little higher (it's my understanding that it should be three quarters through the range) and, your T3 does not need to be increased.
As for your TSH....doctors generally do not like a low TSH, but again no expert here, but, I am of the understanding that, your TSH is where it should be. I have the same TSH reading, and I finally feel the best I have done, Thyroid-wise, in years.
How do you feel on these levels?"...
... So I came to the same conclusion as did Shield, that is, that (my T3 was to high, T4 too low), & I decided that it was pointless to take any more T3, I would need to keep the remaining T3 for emergencies & it was time to try the whole glandular on it's own, with the balanced t4/t3 ratio, based on my 1st (biotin free blood test.
8/1/2021 - TSH = < 0.01, FT4 = 19.2, FT3 = 9 ; "This last test I had cut down to 18.5 ................................................................................................mcg Metavive & yet showed higher .................................................................................................FT3 & FT4" presumably you meant to write you'd reduced tiromel T3 to 18.5mcg, not metavive ?
Related Tagshealthunlocked.com/thyroidu... " I have to transition over to metavive only, (as I can no longer buy T3) - I dabbled with pregnelolone in small doses for a short while in the hope that that would help HPA axis. I also just finished a half course of Nasonex which is steroid, as I had bad asthma. My temperature is down, which is odd."
Yes tatty, you are quite right! I mean't to say....""This last test I had cut down to 18.5 ................................................................................................mcg TIROMEL & yet showed higher .................................................................................................FT3 & FT4" ...
........................ i think perhaps you were on 12 mcg T3 +2 metavive at this blood test, due to this comment " when I was on double the dose - (MMH test )in November my tests were in range ... 7 weeks later,on another FP test & on a further dose reduction they were then over range... local phlebotomy test that I had last week on half the dose of 1st test Now I'm no expert - but, shouldn't my T3 levels be well within range & dropping? ..."
"I will now reduce the Tiromel to 6mg & continue with the 160MG of Metavive",
12/3/21 "Last night I took my BP, the systolic was high & pulse 105. I have propranolol for emergencies, so I took one. I felt much better "
26/3/21 "I cannot get help for what I believe is a return of GD. Jenny583 in Graves Disease Support " healthunlocked.com/graves-d....
27/3/21 healthunlocked.com/thyroidu... "Should I stop taking the Metavive ? I had the worst night of nocturnal hypertension ever. I took 60 mg of propranolol that I had left over from when I was last in that position, & it took 2 hours to get my BP down to 145/83? only got about 3 hrs sleep - if that. It is now 139/83. I am scared to take any metavive in case my GD is back. My symptoms feel just like thyrotoxicosis..."
" When BP went high I cut out everything for 3-4 days.
Then I reintroduced metavive at 140mg, test on 11-5-21 = 4.4 i.e 35%.
Then I slowly increased metavive to 180mg, tested at 5.4 on 5-7-21. ~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
11/5/2021 - TSH = <0.02, FT4 = 12.5, FT3 = 4.4 "140mg ... metavive are 80mcg each ? so do you mean 120mcg ? ie 1 and a half capsules.
5/7/2021 - TSH = < 0.01, FT4 = 14.7, FT3 = 5.4 "increased to 180mg" ?? same question .. how do you get 180 mcg ?.... do you mean 160mcg ? ie 2 capsules
today you wrote "Then I increased to 200, but I feel extremely depressed so I want to slowly go back down to 160mg. I don't want to buy any more metavive. I have been on metavive for 2 years. I am still on 200mg, (last 2 months)I tried to increase, but feel too wired. I increased every time I got worse. I find it difficult to split the capsules",....
OK ,it gets a bit confused again. How long have you been on 200mcg metavive, ? ie. 2 and a half, (80mcg) capsules ?.... presumably only a few days, since previous test was only 10 days ago 5/7/21
p.s another post on HU say's you just bought lots of supplements to help insomnia.. so check they don't interfere with thyroid hormones, and mention if you are taking any ... or else it will confuse what advice people give you next.
.....I am sorry it is so confusing tatty, & I appreciate your patience.
These points really need clarifying.
I was trying to split the huge capsules as & when I felt necessary, sometimes 1 1/2, sometimes 2, sometimes 1 3/4, as best I could & so on, in the hope of finding the sweet spot, as I was bed bound since stopping the T3, & needed to ascertain if I was ill because I was not obtaining cellular levels from the metavive, or if I needed supplements, as I had no way of knowing if my cognitive & physical decline were due to thyroid issues, other low hormones, lack of sleep or electrolytes or the need to detox etc.
I have only just managed ( last night ) to obtain 6 hrs of sleep! my Mg glycine arrived yesterday, so I hope that my mind & memory will improve soon...
BTW the above quoted "200mcg metavive" should read 200mg or 2 1/4 capsules! the #s on blood tests looked good with that dose, but I was not improved at all.
Don't worry about the supplements I bought tatty, I did loads of research. They most definitely do help with sleep too, I don't take them all every day either, & only small doses. None of them interfere with hormones, but if 1 did, I would know.
I have started to perspire again, that hasn't happened in a long time, also my hair (what's left of it!) has more or less stopped falling out. I bought pate last night as I think my iron deficiency is back...
Thanks for all the trouble of going through old posts, that’s very kind of you tatty. I agree that I don't think it was a necessarily a full on graves return in the winter, I suspect I am ruled by blocking antibodies anyway. Perhaps the spike in FT3 was down to the added nucleotides, & the bovine being stronger than the porcine, the T3 on top may have been too much? Also the drop in levels of extreme stress would have upped the serum levels of FT3/4.I noticed many times how my thyroid levels tanked when I was really stressed even when I accidently took an extra dose B4 blood tests - FT3 or FT4 came back as under range on test, perhaps that’s why endo suggested that I dose metavive by symptoms?
I see you had the same spike of thyroid hormones too, it seems to happen to many people. I guess with autoimmune disease & with exogenous hormones - that's bound to happen now & then. You have my sympathies, those Dr's that jump on spikes in hormones are evil IMO. The GP's jumped on my disappearing TSH when I got full TFT's. They only allowed the Free's because I reminded them that I had had severe thyrotoxicosis, even then they couldn't be arsed to check the records, & 2 Dr's lied about the records.
The 1st endo I saw accused me of taking huge amounts of thyroid too, & then leaving them off B4 test, also accused me of causing suppressed TSH via drugs, he even wrote to GP that I had been buying 'sports steroids' over the internet for years, (not true) I had been taking 2 x IV metavives up to that point but told him that I was intending the next day to try T3 instead, he then pretended that he had done the pituitary & other tests. They had not been done...
Now that I'm getting more than 3 hr's sleep - I intend to apply for my medical records...
You ask why I started to cut out Tiromel? answer is 2 reasons, 1. my T4 too low, T3 too high 2. can't source them. The endo's opinion had nothing to do with it, he came on the scene after I decided, he merely agreed with my decision. I did have symptoms of over medication, but that came later, after I decided to quit T3. As far as I know I am dismissed by endo, who anyway was just going through the motions, after I confronted Dr's over their lies & incompetence. I will never be able to try levothyroxine or any prescription meds or tests.
To be honest tatty, I don't know why I felt better on T3, but possibly they helped with depression? Almost buried history showed that Psychiatrists discovered that T3 appeared to be the only remedy for treatment resistant depression. It has been claimed that these women were hypothyroid, however tests were then carried out on non hypothyroid patients, & a very large % got well. Then big pharma did their tests, but paired the T3 with an A D, & claimed that the A D was the cause of the improved mood. Then they replaced the T3 with A D's & claimed the credit for the success of the original trial that included T3 - something like that anyway.
I wondered if the women in those trials had "brain hypothyroidism" where the T3 & perhaps T4 could not enter the cells without large doses of exogenous T3?
Anyway- If it were possible to try a decent dose of T3 on it's own, I would - just to see if it kick starts my brain, but as I say - Yep -I don't know where to get any T3 from - in order to trial it.
First things first, I need to find a source of T3 or thyroid S without a prescription.
I very much doubt that I would be able to obtain a script from the GP, as it looks like the endo would not sanction a script. But once I embark on T3 or NDT I will have burnt my bridges anyway. But I would have preferred a trial of Levothyroxine, I think I would be a good converter, even if only to compare to T3, I have seen posts on other sites where women were transformed by T4 alone, or a combo...
I will now go into the back jungle & get the 1st exercise in 10 months, that will certainly help with everything. Hopefully later I will put out an appeal for sources of rocket fuel or kryptonite...❤️
Thanks! yes It would be very useful if I lived in the US or UK. I bought the STTM years ago, but I can't retain information, I read about half & still don't recall what I read!If my saliva ever comes back & IF I can ever save up enough, I may order the UK saliva test. I have saved the link you gave me to remind me.
There is a quick easy and cheap way to check your adrenals by temperature using Dr Rinds graphs which are on this link with an explanation. That will tell you right away how your adrenals are. This is what I used and it didn't cost me a penny stopthethyroidmadness.com/t...
Thank you Carys! I will try & print that one up, & keep it in my handbag! A few years ago B4 I started self medicating thyroid - I got my then GP to take my temp, she took it twice, it changed by .2 in seconds. My temperature fluctuations have improved since the winter/spring, I notice, but I stopped eating liver pate, so it's possible that my iron sats are under range as usual.
My adrenals are OK, But even if my pituitary is on the blink & cant produce enough to stimulate them, I can't do anything about it, as Dr's are well aware of the falling cortisol levels, & just don't care. The point STTM make about FT3 pooling in blood sounds spot on- except I read on here that it's not called pooling?
BTW, my cortisol levels were way over range for years until a few years ago, In 2009 GP phoned to say my dysautonomia & tinnitus was caused by high cortisol/stress, I still have tinnitus, & it's got a lot worse lately.
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