This is my first time posting so it may be a long one but please bare with me.
I was diagnosed with Hypothyroidism 8 years ago and after getting meds correct after 1st year I had been pretty stable on 125mg of levothyroxine for about 5 years, still felt exhausted all the time but bloods were apparently fine. March 2021 doc said I was over medicated and dropped me to 100mg per day, didn't have any symptoms so didn't think about it. Had bloods done again in November 21 and he said there were fine. Skip forward June 2022 I was on holiday on Spain, the first night I became very anxious and was constantly shaking, I was a bit stressed before I went away so put it down to that as I am quite an anxious person anyway. Basically the whole 2 weeks away were a nightmare, I had tremors, fast heart beat, no appetite, horrible thoughts, terrible anxiety. Didn't ever think it could be my thyroid. So went to my gp and she gave me beta blockers to help and took bloods. Bloods came back she said I was over medicated and reduced my meds by 50mg for the week. They didn't give me any results but I know she said my t4 was 19.8, she said we won't blame it all on the thryroid, my mood was on the floor didn't want to be alive. Next bloods done 4 weeks later showed t4 jumped to 22.8 she she dropped me a further 50mg a week. I lost 19lb in 6 weeks. Didn't seem to be getting any better so went to my other gp and he did tests for graves and said my antibodies were high. He now has me on 75mg per day since September, he said its still a bit over active he said I would be waiting about a year for an endo and wants to do a thyroid ultrasound to have a look. He will checked bloods again in end of November, I was feeling good the last 2 weeks but now staring to feel very down. He said he doesn't know why i went over active between November 22 and June this year. My mind is going crazy and I feel so lost and down. I did have covid and April so I won't was it connected. Any help would be appreciated. I am in Ireland.
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Dollc86
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Thank you for replying, yes he did the antibody test and said it was high but said its was the antibodies associated with auto immune hypothyroidism and that graves test was negative. I will ask him at the end of the month to do a full panel again and some vitamin testing. Also see how the ultrasounds goes. Just feels like I'm never going to get better. It's more the mental and emotional symptoms as the others have seemed to have calmed down. So hopefully I'm going in the right direction.
March 2021 doc said I was over medicated and dropped me to 100mg per day,
Do you have results from this test in March 2021
Never agree to dose reduction based just on TSH. Before considering any dose reduction it’s essential to test TSH, Ft4 Ft3 and vitamin D, folate, ferritin and B12. If vitamins are low extremely important to improve and maintain at optimal levels
Reducing dose levothyroxine inappropriately frequently sets up a long chain of instability ….vitamins drop…TSH frequently doesn’t increase
Then often dose is reduced even further
So went to my gp and she gave me beta blockers to help and took bloods. Bloods came back she said I was over medicated and reduced my meds by 50mg for the week. They didn't give me any results but I know she said my t4 was 19.8, she said we won't blame it all on the thryroid, my mood was on the floor didn't want to be alive. Next bloods done 4 weeks later showed t4 jumped to 22.8 she she dropped me a further 50mg a week. I lost 19lb in 6 weeks.
Anxiety is common hypothyroid symptom
Which beta blocker was prescribed.
Are you still taking this
went to my other gp and he did tests for graves and said my antibodies were high. He now has me on 75mg per day since September, he said its still a bit over active he said I would be waiting about a year for an endo and wants to do a thyroid ultrasound to have a look. He will checked bloods again in end of November, I was feeling good the last 2 weeks but now staring to feel very down.
Which antibodies were tested?
TSI or Trab antibodies are tested for Graves’ disease (hyperthyroid)
TPO and TG antibodies tested for Hashimoto’s (hypothyroid)
If you had Graves’ disease you wouldn’t be taking levothyroxine…..unless on Carbimazole as well …known as “Block and replace”
Far more likely you have Hashimoto’s and had a Hashimoto’s swing (temporary release of excess thyroid hormones as thyroid cells break down)
Have you had coeliac blood test done yet
If not, that needs doing along with vitamins
Hashimoto’s is frequently kept under control by taking high enough dose levothyroxine to suppress TSH to near zero. Reducing dose levothyroxine can upset thyroid
Sorry I know I sound very vague but the doctors here don't really tell you anything. I am self educating threw this fourm and I a bit lost
March 2021 doc said I was over medicated and dropped me to 100mg per day,
Do you have results from this test in March 2021
He never mentioned anything about vitamins to me, only said all my other bloods were fine.
So went to my gp and she gave me beta blockers to help and took bloods. Bloods came back she said I was over medicated and reduced my meds by 50mg for the week. They didn't give me any results but I know she said my t4 was 19.8, she said we won't blame it all on the thryroid, my mood was on the floor didn't want to be alive. Next bloods done 4 weeks later showed t4 jumped to 22.8 she she dropped me a further 50mg a week. I lost 19lb in 6 weeks.
Anxiety is common hypothyroid symptom
Which beta blocker was prescribed.
Are you still taking this
( she gave me proponlol, I stopped taking this after a month because I was getting very bad headaches and I couldn't sleep)
went to my other gp and he did tests for graves and said my antibodies were high. He now has me on 75mg per day since September, he said its still a bit over active he said I would be waiting about a year for an endo and wants to do a thyroid ultrasound to have a look. He will checked bloods again in end of November, I was feeling good the last 2 weeks but now staring to feel very down.
Which antibodies were tested?
TSI or Trab antibodies are tested for Graves’ disease (hyperthyroid)
TPO and TG antibodies tested for Hashimoto’s (hypothyroid)
He tested Tpo TG as far as I know, he said the test for graves was negative and they antibodies that were high were that of Hypothyroidism anyway. In Ireland they don't use the terms hasimotos just whether your under active or over, your just told to take your levothyroxine and be on your way.
Have you had coeliac blood test done yet,
had a coeliac test years ago and that was negative
Dollc A spell like you had is something that can happen with autoimmune hypothyroidism often referred to as hashimotos or hashis. The autoimmune system attacks and damages the thyroid causing it to release higher levels of thyroid hormones. This is called a hashis flare. Following a flare antibodies are higher as they clean up the debris left by an attack. During the period of a flare you will have the symptoms that folks associate with being hyper because of the extra hormones that have been released. This is temporary and once the attack is over you become hypo again.
The way to diagnose hashimotos is by testing for antibodies. @SlowDragon has given you details of that below.
If you type hashimotos into the search function on this site you will find more information about it.
Thank you for replying to me. Ok what your saying makes sense, my gp didn't know why I all of a sudden went Hyper. Unfortunately here in Ireland it's very hard to get an endo and I suppose the gp's only know so much.
I’ve had a few ‘hyper’ like flares, as described by Lalatoot and even ended up in A and E with tremor, palpitations, very fast pulse…. But this was temporary and I needed to reintroduce my previous Levo dosage when it had passed.
How long do these flares last, I've been sick since June! Omg they are so horrible, most physical symptoms have calmed but my mentally I'm struggling with my mood.
I felt I was massively anxious and on ‘high alert’ /paranoid until my thyroid medication and key vitamins (ferritin, folate, B12 and Vit D) were optimal. This did take months, but following forum advice I got there!
Incidents of fast heart rate, palpitations & tremor during ‘flares’ have passed within days of me reducing my medication dosage & I’ve then been able to reintroduce it.
Increased anxiety continues to be an ongoing thyroid symptom for me, but this has greatly improved with optimal thyroid & vitamin levels, plus magnesium, supplements & relaxation via Pilates/mindfulness/ CBT.
In the unlikely circumstance that GPs do know something about thyroid, they render their knowledge and opinions to a higher power - the endocrinologists - who seem to have a firm hand on any ruling around patients treatments - despite the science.
Yes it seems even though its very common, not a lot is known about it, my gp says I could be waiting a year before I even see an endo and could feel better by then.
I have been taking and using excellent advice from the forum since about May 2022, I think - a year after I started meds for hypothyroidism. If I had left it to my GP, I would still be completely ignorant of my situation and frankly very ill indeed. Lack of information, lack of empathy, lack of knowledge and expertise on the part of the GP service etc etc. Visits to A&E showed I was hypothyroid years before I was informed; which I have only recently found out. I tried to see an NHS endo, but no dice. I think my symptom picture and history should give me some purchase with an endo but they won’t even deign to see me. I am now going to see one privately out of my area, as thyroid politics here stink to high heaven. My health is of utmost importance to me and I so recognise your symptom picture (painfully). If I had somehow known it it was my ‘illness’ causing me all these symptoms I could have ……….. It’s taken me a while to stabilise my thoughts and agree with myself a plan of action. I could self medicate. Why not? Not entirely sure of a succinct answer. Still, I have a plan! Best wishes to you.
I was wrongly diagnosed as Graves, largely on ‘hyper’ like symptoms (plus Thyroid Eye Disease, which is more common when hyperthyroid). However, antibody tests later showed I am hypothyroid. It is extremely unusual to have antibodies for both Graves and Hashimotos.
It is very important to have the correct antibody tests to find out, so definitely ask for print outs of your tests and share with us:
Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:
Thanks for your reply. Yes the doctor thinks it's definitely auto immune as he did check all the antibodies, he said I was negative for graves, but the high antibodies were that of hypo. I've been hypo the last 8 years but as my first post it just went haywire in June. The doctors here are so vague it's very hard to get proper help.
Doctors everywhere are vague. They just don't know much about thyroid and nothing at all about Hashis - aka Autoimmune thyroiditis. So, he told you you have Hashi's, and then said he had no idea why you went 'hyper'? That is just incredible that he couldn't join the dots. He should know that that's what Hashi's. What's more he should know that carbi is the wrong treatment because you will go very hypo very quickly.
I don't think you should lament the fact that it's difficult to get to see an endo where you are. Endos are very often worse than GPs where thyroid is concerned, and know less. So, you're not missing much. Hypos are very often better off without endos.
As soon as I saw the title of your post, I thought 'Hashi's!'
They didn't give me any results but I know she said my t4 was 19.8, she said we won't blame it all on the thryroid, my mood was on the floor didn't want to be alive. Next bloods done 4 weeks later showed t4 jumped to 22.8
Do you have the ranges for those T4 results? Because they don't look especially high. Not high enough to be Graves', anyway. So, I would imagine your doctors was mainly going by the TSH, which is a very bad thing to do. A low TSH does not automatically mean hyper.
Anyway, now you can go back to your doctor and tell him why you 'went hyper' - if, in fact, you did, which I doubt - and that carbi is the wrong treatment and you should come off it. The best thing to do with this sort of situation with Hashi's, is just to come off the levo and wait until you feel hypo again. Then, you will not to be back on your old dose of levo again.
Thank you, can I ask was carbi is because I am only on levothyroxine, well we call it Eltroxin here. I'm currently on 75mg a days so he trying to get it back within level and will check it at the end of the month again. Forgive my ignorance but are you saying to stop meds and then go back to my original 100mg per day?
Maybe I misunderstood what you said. 75 mg of what? Levo? If so, it's 75 mcg, not mg. As you put mg, I thought you were talking about anti-thyroid drugs.
I'm a bit confused, because you said the other doctor cut you down to 25 mcg, so I thought maybe you'd stopped the levo and been put on antithyroid drugs. But I think I got it all worng! lol Sorry.
Yes, it is best to get a print-out of your results, otherwise it does get very confusing. So, forget all I said above. Well, most of it, anyway.
Yes sorry it may have been the way I wrote it. Basically started on 100mcg levo a day (700 weekly) was cut to (650 weekly) after another month down to 600 and now taking 75mcg per day (525 wk) since end of September, levels are coming down slightly and need a retest at end of November, with all of your help here I know have more of an understanding of what may have happened to me and what to ask my gp to test for. I really appreciate all of your replies. Thank you
Well, it's the difference between mg and mcg. 75 mg levo would be a massive dose! lol
But which levels are you talking about? You don't want your FT4 to come down too far or you will be hypo again. And, it doesn't matter that much if your TSH is low. If their aim is to get your TSH back into range, then that is probably going to make you unwell.
Ha yes not very good at math so that was my mistake, god I'm not sure to be honest he just said in September I'm still a little over active that ft4 was the upper side of normal to keep taking the 75 and retest end of November, I also am having an ultra sound in December. I'll just wait for the results and post here, and maybe if ye could then see the numbers it may become clearer with what I'm trying to say lol thanks again. 😊
What you are saying is quite clear now. But, what I don't understand is why he's keeping you on 75 mcg levo if your FT4 is still over-range, without even testing your FT3 to find out what is going on. It could be that your FT3 is also over-range, if you've had a Hashi's 'hyper' swing. Or it could be that you need your FT4 over-range in order to get a high enough FT3. But without testing the FT3 he's just groping in the dark without a clue.
Hi Greygoose,Being honest I really haven't a clue 😕 I just rang my gp and they said they can give me results, so when I get them I'll post here and maybe if you have the time you might take a look for me please?
I hope you are well, my gp has just emailed me results from the last 3 blood tests, I've screen shoted them but haven't a clue how to read them. I'll attached here.
Hi, thank you very much for taking the time to look at these.Same brand of levo each time.
Gp only opens at 9.30 am so can't get bloods done any earlier.
Don't think I ever got a vitamin test done. I will ask him to do that at end of the month. I dont really eat alot of foods with gluten except maybe pasta so I will change that. My overall diet isn't great to be honest. What does it mean if I have poor conversion? Sorry I only ever just took my pill and took no notice until June when I got really sick so this is all new to me.
OK, so the only results of any interest there are on 04/10/22. Your FT4 is high, although not over-range, which isn't in itself a bad thing. But, as the blood draw was done late in the morning, the TSH was at its lowest, so if not very useful. TSH is highest before 9 am. Pity there isn't an FT3 result to give us more information.
OK, so there's your problem. Your FT4 is right up the top of the range, but your FT3 is only just about mid-range. That means that you are a poor converter. Bring your FT4 down any lower, and your FT3 will also drop, and you will feel worse. What you actually need is some T3 added to a slightly reduced dose of levo.
Thank you, I wonder does my doctor know this. Doubtful he will prob laugh at me, I think I read somewhere that t3 is difficult to get prescribed for. Omg its such a trek to try and feel better. Thank you so much for taking the time to look at this for me.
Doubtful that your doctor knows anything about T3. They don't learn about it in med school. I had a terrible time getting to feel better - I've written all about it on my profile. That's why I ended up self-treating.
I'd be scared to self treat as I wouldn't have a clue. I know they definitely won't give me any t3, are there anyway you can boost this yourself naturally or possible supplements that you know of?
Do you think the best thing to do would be to get all vitamin checks done at next bloods and see where I am then? Does t4 and t3 need to be pretty equal to look ok?
No, there are none. If there were, we'd all be using them!
You do need to get all nutrients tested, yes. They need to be optimal for all sorts of reasons. But doubtful that will help your conversion.
Talking percentage-wise, the FT4 should be just slightly higher in range than the FT3 when you are converting well.
As for self-treating, of couse you don't have a clue. At the moment. But you can learn. There ar many of us on here that do that and we will help and advise you.
I'm glad I found this fourm you are all so helpful and nice. The doctor actually called me today said another test that he did came back today. It was smooth muscle antibody test. He said I was positive, apparently its auto immune Hepatitis and it attacks your liver, while he did say that all my liver function tests are normal I'm quite worried about it. Did you know anything about this?
I'm afraid I don't know anything about it, now. I'm so sorry to hear that. Why don't you post a new thread asking if anybody on here does know anything about it. I would be surprised if no-one did.
I am still on 75mcg levo and started 800 vit D and have to report I am feeling better. He has referred me privately to an endo for an opinion on what has been going on with me. Unfortunately reviews on said endo aren't great so not sure what to do.
I think it would be a good idea to start a new thread with these results, because very few people - if any - are going to see these results on this old thread.
Glad to hear that you're feeling better, but there's still quite a way to go before your result look good. Your TSH is still on the high side, and your FT4 has dropped, I believe - can't find the last result. They rarely do FT3 because they don't know what it is!
The amount of vit D you've been prescribed is not enough to raise the levels of a sunburnt gnat! And, I bet they didn't tell you that it's not going to do you any good without taking magnesium and vit K2-MK7 with it. Doctors know nothing about nutrients.
Your B12 is so low that they ought to be testing you for Pernicious Anemia before you do any supplementing. And your folate should be at least mid-range. But don't supplement folate before getting tested for PA or it will skew the results.
Looks like they didn't actually test ferritin, but given the low levels of your other nutrients, it will probably be low. However, it should be tested at the same time as CRP - and inflamation marker - because high CRP (which is likely with hypothyroidism) can falsely raise ferritin levels.
If you are paying to see an endo, you should be chosing which one you see. Your GP shouldn't be saying 'here, see this one, but you pay'! If you write a new thread you can ask for recommendations for endos in your area.
The accepted conversion ratio when on T4 monotherapy is said to be 1 / 3.50 - 4.50 with most of us feeling at our best when we come in this ratio at 4 or under.
So if I divide your T4 by your T3 I'm getting your conversion coming in at around 4.40 so slightly wide of centre and showing you struggling to convert the T4 into T3.
It's not by much and maybe able to be improved by maintaining optimal vitamins and minerals - but I can't see results clearly enough to see if there are any ferritin, folate, B12 and vitamin D results and ranges in those photo shots.
We generally feel at our best when our T4 is up in the top quadrant of the range as this should, in theory convert to a good level of T3 - which is the active hormone the body runs on.
Your T4 is at around 100% whereas your T3 is at only 54% -
I think I saw you have Hashimoto's AI thyroid disease which can explain the symptoms experienced and the likelihood that your own thyroid is being systematically damaged and ultimately you will need to think about moving to a full spectrum thyroid hormone replacement.
I have Graves and am post RAI thyroid ablation but many forum members find the research and information imparted in Dr Izabella Wentz book very useful.
Hello 👋I'm going through a similar thing. I was on 75mg for two years. Then had my blood's done in June. Doctor then put me on 100mg. I'm feeling very anxious can't sleep having really horrible thought 🤔 I'm 53 year's old but feel 100 year's old. I've never been the same since being on thyroid tablet's. And can't see a doctor. Really hope you get your sorted.
the same story happened with me also and the gp completely stopped me from taking any levo.. my symptoms started getting better and then after using two months of carb my levels gone back to normal .. I used some homeopathic medicines for my increased heart rate and anxiety .
That's good that you came out of it, I'm hoping to find some success stories, it's very hard I feel my family are sick of me hearing that im sick every day. My gp will just keep adjusting the levo until he seems improvement.
Thank you for sharing your experience , I can’t comment on the dosages and levels because despite reading this site daily for 7 years I still can’t remember what is a good level of TSH for example ! However I will say that I had a similar experience with devastating anxiety post Covid - which was hell for around 5 months but eventually improved, might be worth thinking about the effects that Covid has in our mind body axis. PS I also have Hashimotos.
Hi Steni, thanks for the reply, yes I had covid in April wasn't very sick with it at all but then got sick with all these hyper symptoms in June. My Mom also is hypo and she has been stable on 100mcg levo for years, she also got covid in June and was very sick, she then got bloods in September to say she was over active too, maybe just a coincidence but I wonder was it connected to covid. 🤔
Hi Dollc86 , I have read quite a bit of information (that I can't immediately put my hands on) that shows that hypothyroid folks levels get wildly upset by Covid (and possibly after the vaccine too) that can take 6 months to settle again. It seems to cause flares to all auto-immune disorders. Hopefully you're over the worst of that now and your next tests will show it has settled back down again. 🤞
I am still on 75mcg levo and started 800 vit D and have to report I am feeling better. He has referred me privately to an endo for an opinion on what has been going on with me. Unfortunately reviews on said endo aren't great so not sure what to do.
Thanks for your reply. I'm not vegan nor vegetarian, he said all my vitamins were fine except for Vit D which was slightly low. I am about 56 kilos and bloods taken early morning with levo taken 24hrs before. I had to ask him to do the vitamin checks, I don't think he bothered with them. Do you think I should take the vit D x800 maybe twice a day then? The levo brand I'm taking at the moment here in Ireland is called Eltroxin. I also started taking a pro biotic called Zenflor it has B vitamins in it. Also had the results of my thyroid ultrasound, nothing nasty in it he just said it has inflamation which is due to chronic thyroiditis. I'm seeing him for bloods again in Feb and I'll ask him about that aneamia thing then.
If GP thinks that low a level of B12 is ok …..can you see different GP
Such low levels B12 and folate need correcting now
If you’re not going to get tested for pernicious anaemia now suggest you start supplementing separate B12 asap and add separate vitamin B complex in 2 weeks time
Vitamin D tablets must be at least 4 hours away from levothyroxine
Mouth spray often gives better results as avoids poor gut absorption
1600iu is unlikely to be high enough dose to increase vitamin D result
Assuming you have Low B12 symptoms GP should test for Pernicious Anaemia before starting on B12 daily supplement or possibly B12 injections every 2-3 months
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.
once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
Thorne currently difficult/expensive to get - normally around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
Similar happened to me recently, without suspicion of graves. I don't have any advice as such but it took me around 3 months to fully respond to each dose change. I feel better generally but have been left with a stubborn heart arrythmia. I'm one of those who stopped producing tsh so am dosed by my circulating t4 alone. Good luck, I thought being hypo was awful but hyper is even scarier.
I'm not sure if it was covered in the previous replies, but there are a few scenarios to explain such manifestation of the disease:
1. Remanent thyroid tissue involvement might be of interest. I think SlowDragon covered the topic of a Hashi flare that could explain such situation. One observation - anxiety, memory issues, psychological well-being disruption can be caused by both hypo and hyperthyroidism states.
2. A remote possibility but not unheard of....disease conversion from hashimoto to Graves. Again, very remote possibility after 8+ years but it would make sense to ask for Graves Ab testing
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Something's off.. Hypo or hyper?! 
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