Been a lot of discussion about giving up levo. I almost did. Had been on levels up to 100mcg per day for 4 years. Struggled, felt ill, had anxiety and panic attacks. Was convinced it was levo and it was poison! So I cut down from 100mcg slowly to 25mcg per day. I felt great for 3 months then.... the picture on the left is me with TSH 40, Ft4 and Ft3 under range.
Not my best look. Spent the next 18 months mostly housebound and poorly building levo dose back up. Luckily my GP was testing FT3 as well because my TSH and FT4 were out of kilter. I missed a lot of living and a lot of family events and holidays.
Once I was back on 100mcg levo again but very symptomatic I had decent sets of blood results to compare so I could get the full picture. My TSH was then0.19(0.27 -4.5), FT4 19 (10-25), FT3 4.4 (4.0-7.0). I had gone gluten free a year earlier and all vitamins were in top half of ranges. Using these figures I was able to show that with a TSH that low I didn't want to add any more levo and my FT4 was 60% through range but FT3 only 16.7% through range. It was a conversion problem that had been causing my problems and my symptoms.
I had a sympathetic endo who had known me for 6 years (but didn't know about my experiment!) prescribed a combo levo/lio and said that she would give me a trial of 6 months to a year as she thought, having been so ill, I would need that time for the body to recover.
The right hand photo is me tonight. I have just begun to feel like me again. I have been 10 months on combo and have adjusted levo and lio doses during that time.
If I had advice for anyone it would be don't give up on levo like I did. You need the hormones. But if you don't feel well on it monitor your TSH, FT4 and FT3 levels and look at vitamin levels and allergies. With that info you can begin to see patterns and to see where things can be improved or indeed if you need T3.
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Lalatoot
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Thanks so much for this. . It has really been helpful for me and I am touched by your honesty and humility and generosity of sharing your experiences. X
Thanks for sharing your story. It shows how important it is to keep going. (Also, you now look about ten years younger and so much happier!)
I can only agree with others! Thanks for sharing, and I really hope this makes people reconsider before going off levo. Once hypothyroid, it´s very unlikely you will be able to go off thyroid hormone replacement, so most of us don´t have an option. What we can do is try to optimise our treatment, and then forums such as this one are invaluable.
No person with diabetes 1 would consider going off insulin. Of course, that person would die within 24 hours or so. The problem with thyroid hormone deficiency is that it doesn´t kill us instantly, but that our health deteriorates slowly, over several weeks and months and years, if we are un- or under treated. But your post shows better than anything how thyroid hormone deficiency can have a negative impact on your health and quality of life.
I hope everyone considering going off levo reads this!
Looking so beautifully healthy now 🤗 Well done! I have similar before and after pictures (not because I gave up Levo but before T3 and after) for me it’s my spirit, my mental health that tripled! I still have heavy eyes but nothing like what they were, I think nearing 50 and 20yrs if I’ll health is just shown on my face now.
Thanks for this post. So many people feel like you did and it's great to have a post that truly illustrates the problem. Glad you are starting to feel well and long may it continue!
My last bloods were done on 100mcg levo and 20mcg lio. FT3 was 7.7 (4.0-7.0) and I was feeling it so I dropped to 15mcg lio. Bloods to be done this week.
We are all different though so what suits me won't necessarily suit another.
I sit the dose because I could not tolerate more than 50mcg in one go. It is useful to spit the dose because if one of the split doses gets compromised on occasion then it isn't too much of a problem.
As a child I was told you have to take the medication for life and that was 60 odd years ago. Glad you are feeling a lot better. Not worth giving it up as you have found out. You will get sorted out in the end just keep persevering, you have given a good warning to other people thinking of doing the same. Thanks for that.
Great post. Thanks. I'm going to have to add some T3. It scares me. I feel it immediately and get all sorts of anxiety, but my T3 is too low and raising Levo doesn't help, just makes me feel worse.
Just remember that the key for T3 is to take it slow. My doctor prescribed a 25 mcg dose, which I knew from my participation here was way too much to start. So I split the pill into 4 pieces and only took 1 a day at first, slowly building my way up to an entire pill, taken across the day. I now take 1/2 in the morning along with all my T4, and the other half in the middle of the afternoon.
I took 1/4 pill a day for 2vweeks. Took 1 piece in the morning and another one in the afternoon for two more weeks. Then went to 3 pieces, 1 every 5 hours or so for 2 more weeks. Then went to the half pill in the morning with other half late in the afternoon.
A picture (or two) is worth a thousand words. Thank you for posting, and I'm happy for you that you're so much healthier now.
Have you watched any of Paul Robinson's video diaries on You Tube? There is one in which he talks about his experiment reducing T3 and replacing it with levo, and the narrowly averted disaster that was the consequence. I think he was very brave to talk about how bad things got, and I salute your own courage in posting your cautionary experience.
Wow! You are your own rat lab. Great Job.Well done.Determination proved to pay off.In addition having a very supportive/caring Dr is extremely essential for our well-being too.
Take home lesson . Never Give Up.
Thank you for sharing what turned out to be a successful experience .
Glad you are feeling better! It also speaks to the need for T3 testing. Without it you would not have been able to identify the conversion issue. Lucky to have a Dr. to work with!
You certainly look far more relaxed in the second pic I have been on Levo for 25 years so am reluctant for change as old age can take its toll and I don't want to fall to bits just yet !
How did your thyroid get damaged, have you ever smoked? I'm convinced hashis is code name for smoke damage eg cell death, necrosis. Were you born with thyroid disease? were you once hyperthyroid and received that radioactive iodine stuff? Did you have nodules and have them surgically removed?
It would be nice for the medical profession to write accounts on what to expect in regards to thyroid recovery times for the above scenarios, if any return to thyroid function exsists in any of those scenarios, or if at all it has ever been researched or once on thyroid medications that that. Doesnt the thyroid have the ability to regenerate like so many of tissues and organs? Not all thyroid diseases is caused by the same variable. A friend of mine had part of her thyroid cut out due to nodules, she was put on levo but it made her sick so she stopped and lives life with what remains of her thryoid functions and does ok. She holds down a job which for many on the forum is impossible due to thyroid replacement side effects.
When you quit your levo did you know if your thyroid could still make any thyroid hormones at all and if you did , did any medical professional tell you what to expect and if you could resume some thyroid function? how long would it take and what kind of diet should you be on in such cases.
Or what about a Mother who smoked all during pregnancy and beyond? Or two or more generations of smoking Mothers and plus possibly some sort of predisposition in the first place? Could this be a part of the equation? Thyroid problems are at an all time high.
ncbi.nlm.nih.gov/pmc/articl... Thyroid Autoimmunity: Role of Anti-thyroid Antibodies in Thyroid and Extra-Thyroidal Diseases
"...Exogenous factors include smoking, which has a protective effect on HT incidence by lowering anti-Tg and anti-TPO antibody levels, while favoring the development of GD..."
Smoking has an interesting relationship with Auto immune thyroid disease: it is certainly an risk factor for developing /worsening Graves Hyperthyroidism. However, for Hashimoto's it appears to be protective / associated with lower TPOab and TGab levels .
and STOPPING Smoking is well known to preceed diagnosis of hypothyroidism /worsening of already diagnosed hypothyroidism.
yes 'tis true . loads on here were diagnosed or got significantly worse after stopping smoking . .... it's an acknowledged connection in research , but for obvious reasons it's not publicised much , as it's not an 'on trend' public health message ....." if you already smoke ,for heaven's sake don't stop, or you might just go hypo " lol ( i'm sure part of the explanation is simply that the stimulus effects of tobacco just masks the flagging symptoms of early hypo , i know i use the stimulus of a cigarette to keep me functioning when i'm done in but need to keep going... but there is probably more too it than that )
Anecdotally only, I used to be involved in an alternative health thingy and there also was an observation there that after people had been smoking for many years and they stopped, serious illness of all sorts turned up. It’s like the body had learned to adapt to the toxic environment but when it changed, usually in a bit later life, it could not cope. I stress it was just an observation. I sometimes wonder too why I survived so long hypothyroid (I am almost certain) without diagnosis, as I have always being pretty aware of health issues. Crap doctoring apart. Keeping fit, eating well, don’t smoke, don’t drink etc. I watched friends doing the complete opposite and remaining sylph like and trendy, whilst I ended up fat and ill. I think it’s just possible that if I had not looked after myself so well it could have been diagnosed earlier and I could have shortened this long and gruelling journey. Or maybe I am just talking myself into anything at the moment while I am champing at the bit?
'tis just wishful thinking arTistapple ....Smoking rollups and drinking moderately since the age of 17 didn't stop me becoming hypo at 32, or help me get diagnosed any quicker ...... and it still took another 4 yrs before anyone thought to do a thyroid test ...in fact smoking fags instead of eating biscuits possibly delayed the time a GP thought to test my thyroid as i wasn't fat, so no-one thought i could be hypo . When i stopped smoking for a couple of years, i then developed symptoms of Post Exertional Malaise~ similar to ME. I also had stupidly high TPOab at diagnosis >3000 ... so despite the research, smoking is no gaurantee of low TPOab levels .
I later started smoking again in a very abstemious way 1-3 a day .. didn't get any better . or any worse , i've still got 'something like M.E'.
It's swings and roundabouts isn't it .... some bits of my body are undoubtedly f**cked up by smoking ... and some bit's are possibly so pickled with nicotine that they are immune to catching colds and flu and covid .
Flippin eck! Sooo want a ciggie now to see if it makes me feel better 🤣. Funny also that it’s been kept under the radar that people who smoke are significantly less likely to get COVID 🤷♀️. ( my friend was part of the Astra Zenica research team and told me this 6 months into the research programme)
lol.... i can save you the bother .. i still have one roll up a day after dinner (and on a very rare social occasion i'll get pissed and have 36 if i want too)...trust me ,it won't make you feel better.... it'll just mean you want another one tomorrow, and another .. and another..... and then you'll be a smoker again ....then your teeth will go brown and fall out.. and your blood won't go to your toes anymore and they'll go purple and fall off..... and you'll get cancer of something or other before your time....
That is fascinating. My Mother a smoker, with hindsight to me suffered undiagnosed hypothyroidism and her Mother before her, although my Grandmother was put in an insane asylum temporarily. After reading Angelic69 I was put in mind and I have searched all morning of a black and white movie where a woman, apparently loved by her husband lived in chaos and clutter and her husband left her for another woman. However I could not find it. I watched it with my Mother and her comment was “there are actually women like that!” It was somewhat delivered as a warning rather than in empathy. Such were the times I think. Anyway thrown back into this memory I wondered if the woman portrayed could have been hypothyroid. You maybe can tell I have just had one of those particularly terrible nights where I was in some circle of hell trying to find my way out. Oh I could do without those. The patience required of us when we want shot of this is sometimes UNBEARABLE. Just taking my keyboard for a walk. Thank you.
I was hyperthyroid. I had been taking multivitamins with iodine in them for years. I think they tipped the balance. I do not have graves or Hashi's. No one in my family has ever had thyroid problems.
I had radio active iodine and became hypo. I had no guidance from medics. They did not help me with information. If it wasn't for this site I would still be ill and blaming levo.
Can you tell what your process was starting the T3? I tried adding t3 and ended up with racing heart that scared the day lights out of me and went back to just levo. So I am really curious what your process was in starting and increasing, etc. Thank you
You have to need T3 firstly. So blood test need to show TSH 1 or under with FT4 well over halfway through its range and FT3 lagging under halfway through its range as a rough guide.
Vitamins should be well over half way through their ranges.
If FT4 is not at the top of the range there is no need to reduce levo. If you are just making up for poor conversion this is a top up of T3.
5mcg for the first week. If ok add another 5mcg as a separate dose afternoon or night.
If things are fine you may wish to stop there. Wait 8 weeks and bloods.
I was told to reduce levo by 50mcg and add in 20mcg lio by an endo. This was her guideline as to my dose. So I have been working at undoing this really - working my levo back up and reducing my lio to get the dose that suits me. I am just switching to 125 levo and 10mcg lio over the next months. This after being strong and pushy with 2 endos who can't quite get the finer details of dosing.
I would say if it is for a conversion problem think of it as a decent dose of levo with a little added lio to make up for an inefficient system.
Well this is great information and I did a chart up of as far back as I could of all my tests and rarely did I get a T4 and T3 test but when I did it shows I have been under medicated (below halfway range) and for decades and this because they (numerous Dr.s)have been dosing me by TSH. Every time I was feeling good at a higher dose (received after begging for it because I felt so poorly) over the years they would freak out if I came even close to the lower range of TSH and reduce my dose.
The fear mongering for 30 years has brain washed me into being afraid of keeping my levo dose higher. So it seems to me I need to try a higher dose of Levo first. Even thinking it scares me as when I go in an take the Blood Test and my TSH shows under the bottom of the range I fear I am going to get pressure to lower the dose again.
I have a new Endo now that isn't thrilled with my TSH under, but is allowing me to have a higher dose, so I guess I should try that for 6 weeks and test again. After that I can determine if it is conversion or that maybe I was just at too low a dose. I wonder now, that if because I was at such a low dose for so long if that is why changing my dose up one level can cause the symptoms of tension, anxiety, more hunger, etc. It is so confusing because some symptoms are both hypo and hyper symptoms from what I have read in numerous places. Perhaps the body just needs to adapt to the new dose... Thanks so much for your response, it's greatly appreciated.
Lalatoot I don’t quite know why this popped up for me but I was very glad to read/see it. So good to know your patience and adventure eventually paid off. I am in a similar spot to your description and I have similar photos. I did honestly look different but I put it down to age, although I thought I looked like an old soak (drinker). I was not happy about it but what could I do? I had another photo which made me look hyper, eyes popping a bit but I did know enough that I was so ‘knackered’ it could not possibly be hyperthyroidism - the one people generally know more about and fear. I did many many years ago ask about hypo and was told in no uncertain terms NO NON NO it’s very rare and to my shame nearly sixty years later I still believed that. Anyway the point is you look lovely, just the way you are supposed to look and I am really really pleased for you.
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B12 testing...don't know what to do...
Weight gain...what did your levels need to be to start losing weight?
Confused. Do I really need Levo?
What should I do about these thyroid levels?
what should I do next?
