I have been unwell for 7/8yrs. Had Hypothyroidism 25 yrs and prior to be coming unwell was on 100mgs Eltroxin. Was finally diagnosed with Lyme disease and co-infections last Feb and treating for that. I have had high rT3 throughout and was on T3 only and doing OK. My issue now is that end Oct I became v hyper. Decided to retry T4 only as my last rT3 was 10. Started on 50 and increased to 100, felt awful so added in T3. This threw me hyper again which I only figured out Dec 22nd. Stopped all T3 meds for a week and was on 75 T4 only. Felt great on T4 only Day 5 and 6 but felt awful Day 7 so started v slowly adding in T3 again. Bloods on Day 5 of 75 T4 showed TSH 0.94, FT4 11 and FT3 3.1 ( both low in range). Felt v hypo from Day 6 onwards so started adding T3 back in but feel absolutely awful again and as if I'm hyper on low doses of T3. Got rT3 done whilst I was on 100mgs T4 and it had increased to 23 ( ref range 10-24). I'm wondering should I go back to T3 only but at a lower dose or retry 75 T4 only? Any suggestions pls? Really struggling as thought I'd be stable by now but finding thyroid dose seems to be a huge problem for me. TIA
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louise52
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Louise the body likes stability. You need to make small methodical changes 1 thing at a time. Random guessing and chopping and changing doses makes things worse.Symptoms of overmedication and undermedication can be the same so you really need to confirm what has caused the symptoms by doing blood tests
Once you make a change you then need to keep on the same doses for 6 weeks to let things settle and for the body to adapt .
Thank you Lalatoot and I understand. Just finding it very difficult to tolerate the symptoms.s especially anxiety. I had classic hyper symptoms on T4 plus T3, lost 7lbs in a wk, insomnia, v high heart rate, anxiety, irritability. Thyroid GP told me to switch to 75 T4 and slowly add in T3. Dropped to T4 and anxiety and other symptoms decreased greatly over the course of a week. Day 7 felt completely hypo so started adding in 5mgs T3 but felt hyper symptoms returning and anxiety has increased since. Did bloods on Day 5 no T3 , will continue with 75 T4 only and monitor signs and symptoms but my guy is I don't do well with any T4 in the mix. My concern is I have just returned to work PT after 7 yrs and need to continue working but feel so dreadful I'm worried as I will lose my job permanently. Thanks for answering.
The reason I responded was your words hyper symptoms. When I am undermedicated I lose weight, I get anxiety and my resting heart rate increases. I lost a stone and a half when I was undermedicated and on levo only. I just want to make folks aware that the lists of hypo and hyper symptoms are not clear cut and that you can have the same symptoms for both. This means that you need to also look at blood results from being on a stable dose for at least 6 weeks to determine whether to increase or decrease a dose.Hope things settle for you .
Yes I had my bloods done and my FT3 was tip top of range before adding my T3 in for that day leading me to believe it would be extremely high after adding in 30 T3 so I was deffo hyper NOT hypo. Good to know though.
Good grief it sounds awful but when it comes to thyroid hormones- it needs to be low and slow as Lalatoot suggests. Small changes and wait for body to adjust. You say you are being treated for Lymes? What medications are they using for this and are you taking any other medication, or HRT for instance?
Everything is relevant. Also I noted from an earlier post you have Hashimoto’s. This is also a possible cause of difficulty in getting a balance. I noted you have also tried NDT.
What are your vitamins looking like? Do you supplement at all?
Sorry just more questions but hopefully this will help identify possible issues and help forum members make suggestions.
I'm on Lymecycline, Azithro and Rifadin as well as LDN and tonnes of supplements since Feb 23. I was doing fine until this Sept. Gut instinct was the Lyme treatment diminished my need for such high T3 requirements as I had been on 60mgs throughout and functioning well on this. I'm also on HRT , 1.5 sachets of Divigel, Utro and Testosterone as Lyme crashed my Endocrine system and my hormones. My Oestrogen levels have dropped recently so my Gynae said it was OK to increase by a pump whilst I'm sorting thyroid. Throughout this whole 'journey' I have never really tolerated T4 only or NDT, T4/T3 combo so I don't know why I changed when I went hyper. I should have just decreased T3 instead of going down this road but I wanted to see if the Lyme treatment had helped my thyroid and perhaps I'd be good on just T4 again!! My fault
I wanted to see if the Lyme treatment had helped my thyroid and perhaps I'd be good on just T4 again!!
Nothing is going to 'help' your thyroid when you have Hashi's. Your immune system is slowly destroying your thyroid and it cannot regenerate.
What's more, you cannot 'go hyper' once you are hyper. As said, the thyroid can't suddenly regenerate and start pumping out excess hormone. You could have been over-medicated, but what do you mean by 'hyper symptoms'? Symptoms of both under and over-medication can be the same. And anxiety is very often a hypo symptom. 60mcg T3 is not a high dose when on T3 mono-therapy.
From my experience, if you cannot tolerate T4, then you never will. So, do you really think going back to it is a good idea? Certainly wouldn't be for me.
As for rT3, that is a total red herring. It is inert, so doesn't make you feel anything. It's not even worth testing. It can be caused by many, many things, and only one of them has anything to do with thyroid. And that is when your FT4 is too high. So, I would forget about that, if I were you.
As has already been said: too many changes in too short a time. Your best bet would be to pick a dose and stay on it for six weeks and then restest and see how you feel.
Thank you GreyGoose. I was told I had Hashis 25 yrs ago but tests in last 8 yrs my antibodies are normal so not sure if I had Hashis? Yes , what I meant was I was overmedicated and symptomatically so but I was unsure if I was over or undermedicated until I checked HR, I lost 7lbs. had zero heat tolerance, poor sleep, waking at night in a jolt and wide awake, inner trembling, really anxious, irritable.When I stopped T3 for 5 days my high anxiety lessened, sleep improved. I'm I really don't know what my issue is with my Thyroid. I was on 100 mgs T4 when 1st diagnosed and never thought anything about it as I just took the pill, had no issues. But once Lyme hit everything changed and I felt I did better on T3 only. I should have just decreased my T3 meds slightly when I went overmedicated so it is my own fault I feel so awful. I agree with you re T3 . I am a poor converter so should have stayed on T3 only. I don't know what to do now, stay on 75 T4 for another 2 wks until I see my GP or try to revert to T3 only at a lower dose.
I was told I had Hashis 25 yrs ago but tests in last 8 yrs my antibodies are normal so not sure if I had Hashis?
If your antibodies were high 25 years ago then yes, you had Hashi's. That's the only reason they would be high. Could be that they are now within range because your thyroid is dead or nearly so.
When I stopped T3 for 5 days my high anxiety lessened, sleep improved.
I'm afraid five days isn't enough to prove anything. Anybody on thyroid hormone replacment who stops it - for whatever reason - will find that their symptoms disappear for a while. That's just what happens. But, if you're hypo, sooner or later the symptoms will come creeping back in.
I really don't know anything about Lyme - except for wondering if I too have it (multiple tick bites) but it's bound to change things, I should think. So, you have to adapt to a new 'normal'. But it has to be done slowly. But understandable that you panicked and just wanted to sort things as quickly as possible. I think most of us have done something like that at some time or other.
I don't believe there's any mess that can't be sorted out eventually. If it were me, I'd just give up on the levo and go back to T3 mono-therapy for the next six weeks, and see what happens.
Welcome back to the forum! I am so sorry you have felt bad for so many years. Looking at your past posts, there is a 6 year gap! That is a long time, and I’m glad youve come back for some advice.
Finding the right thyroid dose is hard for all of us : ) in fact, when I think about it, if it was easy this forum probably wouldn’t need to exist!!!
It’s a constant struggle for all of us, but it’s a tortoise and that hare situation.
I can’t tell from your post- what hormones/vitamins/meds are you taking right now and for how long? What was the date and results of your last blood test (include ranges too)
My issue now is that end Oct I became v hyper
What were your bloods at this point?
Started on 50 and increased to 100, felt awful so added in T3. This threw me hyper again which I only figured out Dec 22nd.
What were your bloods at this point?
Stopped all T3 meds for a week and was on 75 T4 only.
This alone would have created confusion and symptoms with your body/blood. Moreso since it’s part of a string of other rapid changes.
Echoing what Lalatoot said - the first thing I see when I read your story is that you are changing up your hormones/meds too rapidly. “Low and slow “ is the mantra here.l when it comes to dosing changes.
Unfortunately, thyroid hormones are part of a long and multi-stepped chain reaction in our bodies. And those things takes weeks and weeks to settle. During that time, you will feel ups and downs, better then worse again, old symptoms come back and new ones appear. But how you feel on day 2 or 5 or even day 30 is not a reliable marker for making dosing changes. In fact, often it is said that taking our bloods a week or so into a med change is unreliable.
The guidance is - get your full bloods following proper protocol including these things: TSH, FT4, FT3, Vit D, B12, Folate and Ferritin. (And results for thyroid antibody tests done any time in the past.)
Share exactly what meds you are taking, and for how long. This should be one med dose regiment for a minimum of 6-8 weeks.
You’ll get more helpful, specific input from the forum with that information.
Sorry to hear you are having such a rough time. For a month try cutting out all sugar, sweet things, cake biscuits chocolate etc and all grains. No wheat rye oats rice pasta bread etc. Mo processed foods, cook from scratch. Eat vegs meat fish eggs nuts cheese dairy avocados, berries, apples & pears in moderation, probiotic yoghurt, kefir. Start eating fermented foods like raw sauerkraut (easy to make), kimchi, apple cider vinegar (with the mother), take probiotic supplements. There is more and more research coming out on how importabt the gut microbiome is to health. Try it, its been a game changed for me. Its hard cutting out wheat, but try it...
Thank you for your reply. I don't eat dairy as I have histamine issues, or avocado, sauerkraut, Kim chi, kefir etc. I do take high dose probiotics as I'm on high dose antibiotics for Lyme and I totally believe in gut health too. I eat as clean as possible , my issue is finding the correct thyroid dose but thank you for taking the tome to comment. I appreciate it x
Have you heard of Tim Spector and the Zoe method? Might be worth looking into it as it may help solve your histamine problem too.... I wish you well in your health journey...👍😊
your trying to 'get control' over the illness by keep changing your dose adding this and that, supplements getting tested for everything under the sun, been there done that myself. Best option is try and get some treatment for your likely PTSD, once you get that treated you will stop chopping and changing trying to get the better of yourself. I say this in the nicest possible way because ive been through it, ive had no thyroid since 2016, i didnt listen to my GP's and really all i needed to do was stop and listen and start treating myself kindly.
I found changing any dose takes about 8 weeks to settle down for your body and your mind to acclimatise to it, it doesnt happen over night! T3 is very hard on the nervous system, you only need a very small amount, i take 112.5mcg T4 and a quarter of one grain of NDT (2.25mcgT3 and 9.5mcg T4) every morning so roughly 125mcg of T4 which is exactly what i was on coming out hospital (125mcg T4).
Clean up your diet, reduce supplements, minimise pharmaceuticals you can with advice of GP, there is no way on earth you can tell what is what when your taking such a cocktail and chopping and changing, most importantly start being kind to yourself, many things in life change our moods, quite often our behaviour and people around us are the root cause.
Great reply, yes I do agree. I was fighting for 7 yrs to get the Lyme dx whilst v ill and I definitely do have PTSD, health anxiety to a certain extent. I was on 100mgs T4 prior to everything falling off a cliff and took it and no issue but I'm on 75 T4 now a good mth, only a wk T4 only so maybe I just need to give it more time to settle but I feel really dreadful as if I'm not getting anything? Lyme deffo crashed my Endocrine system hormones as my periods stopped too. My sleep is awful too. I just want to try to optimise my thyroid hormones finally and if means taking meds for my health anxiety I am OK with that. So I really appreciate this comment, thank you. I have an appointment with my Thyroid Dr tmrw so will discuss with him
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