I posted a while ago, and received some excellent advice but since then things have got a whole lot worse and I am now almost completely housebound and suicidal.
I have hypothyroidism, which was treated successfully for 4 years with both levothyroxine and T3.
After an episode of experiencing severe over-active symptoms (including terrible atrial fibrillations), I stopped taking both levo and T3.
I thought this would be for a week only, to allow the worrying over-active symptoms to settle.
However, this was nearly 4 months ago and I still can't get back to taking either levo or T3.
Some of the worst symptoms I experienced during the over-active episode was extreme ringing in the ears to the point of deafening me and making me delirious; a vibrating sensation in my head; and blurry vision.
I still have these symptoms nearly 4 months later, but I am also now experiencing many under-active symptoms like extreme fatigue, muscle pain, etc....
My recent bloods show:
TSH (0.27 - 4.2): >100
T4 (11-25): 5.13
T3 (3.1 - 6.8): 2.83
I have tried so many times to re-start either the levo or the T3, and every time I get extreme episodes of ringing in the ears, delirium, and confusion, with blurry vision and often tingling in my arms and legs too.
I have tried levo on it's own; T3 on it's own; both together; all different doses.
My GP advised that I leave it and take nothing for a month. I have done this. I am now trying to take a quarter of a 25mg levothyroxine tablet per day.
I have been doing this for a week, and the really bad symptoms are starting to build again.
I just don't know where I go from here. My life is essentially over. I can barely get out of the house unless somebody helps me to the car. I cannot do the smallest of tasks.
Four months ago, I was a busy mum of two, playing regular sport and holding down a successful career.
Is there anyone who has gone through similar and could share any advice?
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GP46
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I have been through similar and feel for you as it was most unpleasant! I knew I had previously tolerated it so was mystified as to what was so different.
In the end I just had to put up with the awful symptoms and get through it somehow. It took many months but the symptoms did subside.
One thing to check is if you have a wee infection. They can be ‘silent’ with no actual traditional wee symptoms.
Also check vitamin levels. What supplements are you taking?
I have had some further blood tests done privately recently (as my GP would not do all of them).
Vitamin B12 (180-900): >2000
Vitamin D (>50): 84
Serum Folate (>3): 3.8
Serum Ferritin (15-300): 19
9am Cortisol (133-537): 262
9pm Cortisol (73.8-291): 119
Calcium (2.20-2.60): 2.19
Anti-TPO (<34): 416
Anti-Tg (<115): 81.7
I am worried that the worst of my symptoms are things I've never experienced before in my life. The vibrations in the head with tingling all down my arms and legs are terrifying. I am often completely incapacitated with this. Do you think there could be anything else going on as well as the thyroid issues, as some of the symptoms seem neurological?
I have some urine dipsticks in the house, so I will test for any abnormalities there.
I've never tried gluten or dairy free as prior to this episode I've never really felt the need. The T3 was the most successful element to my initial recovery after diagnosis.
Things have obviously changed and now I am desperate so will try anything.
Jaydee1507 I would be interested to know how you managed to get back on to the levo, and whether you had any of the same symptoms?
At the moment, my plan is to try to the very slow and gradual approach recommended by SlowDragon.
I am a week in to taking a quarter of 25mg levo every day, and already struggling
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 folate supplement (eg Jarrow methyl folate 400mcg)
Post discussing how biotin can affect test results
Then once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce then stop the B12 and just carry on with the B Complex.
If Vegetarian or vegan likely to need ongoing separate B12 few times a week
I have had completely the same issue. I was over active (over medicated) or I was even under medicated having these same symptoms. Even to the point I had suspected Tia and was in hospital having brain scans. Went to an eye dr as I lost my vision for 3 hours completly, was having blurry vision constantly and could hardly see some weeks.
My main question to all these specialists was can my thyroid being over active (over medicated) be causing these issues. They said straight up no. But I disagree I think all the neuro problems were the meds. I also have PoTs so I am used to a racing heart but I actually felt like I was going to have a heart attack. I am on heart meds to slow down the heart, but they were hardly touching me.
Since all of this, I have cut down the t4 slightly (as advised on this forum). I am still having a few issues and the extreme fatigue still but things are a bit better.
Serum ferritin level is the biochemical test, which most reliably correlates with relative total body iron stores. In all people, a serum ferritin level of less than 30 micrograms/L confirms the diagnosis of iron deficiency.
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing.
It’s possible to have low ferritin but high iron
Medichecks iron panel test
Test early morning, fasting.
If/when on iron supplements stop these 3-5 days before testing
Meanwhile Look at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Low ferritin can make it particularly difficult to tolerate levothyroxine
Hi slow dragon sorry to interupt this thread with my own query.
I am an older man.I have hypothyroidism (diagnosed about a year ago) i had no symptoms and take lego 100mg and still have no symptoms that i know of.
Because i had a blood test and had a heart op they said i am anaemic.I take iron tablets and am still anaemic.I notice you mention transdermal patches.
My other query is stomach acid. do you think tablets for making this stronger would help my iron?
I was wondering about the best way to address the folate and the ferritin.
I wish I knew how long they have been that bad for.
Before the over-active episode and stopping the levo & T3, I felt quite well. That was 14 weeks ago now so I wonder if the folate and ferritin have changed significantly in that time.
Also - do you think that could account for the terrifyingly loud ringing in the ears with blurry vision and confusion?
Hi GP46, are you on B12 injections? Your B12 levels are very high. But folate is low, so that definitely needs some raising.
In my case, function B12 deficiency made me very intolerant to thyroid meds. My serum B12 levels were high because I was taking sublingual tablets, but they were doing absolutly nothing. When I'd stop the tablets, B12 levels would fall like a rock.
At the time I posted that, I could only tolerate something like 12.5 mcg T3. Levo made me very ill.
Now I'm on a good dose of T4 +T3. Starting B12 injections helped immensely! As did getting folate up. Now that my B12 levels are fine (I still inject daily), I notice thyroid medication intolerance comes back when my folate goes low!
I was also diagnosed with adrenal insufficient 2 years after starting levo, and that helped immensely too.
Hope that helps. Best wishes, I know how miserable you must be feeling xx
Yes, I have been on regular B12 injections and found them to be hugely beneficial.
I have stopped them since seeing the blood test result as not sure if I was having them too often and level has gone excessively high over time. I am going to concentrate on getting folate and ferritin up for a bit.
Am also concerned that the real problem is cortisol though.
Hi, no you cannot overdose on B12. I've been injecting 2 x day for nearly 7 years, no problems yet except getting better and better. My levels are always >2000. As long as you don't have kidney or tolerance issues, high levels of B12 are not toxic.
But that low folate will mean the B12 isn't as effective as it could be.
And yes , absolutely those can also be low cortisol symptoms. If I were in your shoes I would ask for an early morning, fasting, cortisol test and eventually a stim test
I'm not sure I agree on overdosing B12 - If there is a range for B12, I think it's safer to be within this range, unless your doctor is OK with being above or below the normal range. peoplespharmacy.com/article...
My levels of B12 were well above 800 (maximum normal level is around 700 or so) because I was taking a supplement. I had lots of symptoms that I think were related and my GP asked to stop the supplement immediately.
Elevated vit b12 on its own, without supplementing, can indeed point to some diseases like cancer.
However b12 on its own is absolutely not toxic and no country on the planet has set an upper limit of tolerance.
Some people may have issues tolerating b12 because of personal metabolism, but it's not because b12 is inherently toxic or dangerous.
The person cited in that one case study may have developed very low potassium based on the reported history & symptoms, as red blood cell generation resumes - those details are not in the abstract and i can't see the full paper. They may have been better off with lower doses & worked their way up to a standard dose with proper full workup. There is no followup so i wouldn't be surprised if that poor woman is now suffering from severe b12 deficiency because she has PA and they stopped injections just like that.
People on injections should ignore blood tests and even the guidelines say serum b12 does not need to be tested once on injections.
Supplementing b12 alone can also cause other Bs to get out of balance. Low folate for example.
A B complex high in B6 can for sure cause issues because B6 is toxic at high levels.
'If there is a range for B12, I think it's safer to be within this range, '
If only it were as simple as 'being in range':
----
there is no consensus amongst scientists as to what levels constitute a deficiency and this is further complicated by the fact that different countries and different areas within countries UK will have different thresholds used to determine a deficiency. That means that in one particular part of a country you will be told your B12 levels are ‘normal’, yet if you lived in another part of the country you might be identified as being deficient. Some scientists believe even the highest thresholds that are used to define a deficiency are far too low. 5
Approx 26-7 years ago I stopped levothyroxine on 3 separate occasions….long story short..left on very inadequate dose
If you still can’t tolerate increasing levothyroxine even as small split doses……you may need propranolol prescribed alongside. This is beta blocker.
(Can’t take propranolol if you have asthma)
Propranolol lowers adrenal need…..as blocks cortisol, so it makes low cortisol last better.
It also slows uptake and conversion of Ft4 (levothyroxine) to Ft3 (active hormone)….which is why its often used for hyperthyroid patients
Propranolol was the only way I could increase dose levothyroxine up over 75mcg ….to the necessary 125mcg ……..even then it took approximately 2 years to SLOWLY increase……then eventually T3 added (more on my profile)
sorry to hear you are having such a dreadful time, it’s a cruel cruel disease. The one thing sticking out for me immediately is cortisol - have you had this tested via an adrenal saliva sample? Tinnitus, palps etc all point to adrenals being highly stressed hence the difficulty getting back on the meds. Being hypo puts a lot of stress on the adrenals and they need sufficient t3 to produce enough cortisol. Very much a chicken and an egg scenario. I had the exact same thing happen to me and it was my cortisol.
THIS THIS THIS THIS THIS THIS. I was exactly the same. Persevered with no meds, t4, t3, t4 and t3, NDT etc. all to NO avail. Please consider cortisol. It kills me what little recognition cortisol gets in the thyroid world. If only someone had shouted it at me louder god knows how much quicker I could have gotten better!
I am not a medical professional. I have just collated helpful information available on adrenals found in different, reputable thyroid help books. Adrenals do not get enough recognition for their essential role in the effective metabolism of thyroid medication. For some people taking thyroid medication is enough to get adrenals working again, for others it isn’t.
If you are having problems raising/tolerating/having no benefit from/feeling worse from your thyroid meds consider cortisol -
"At least 50% of hypothyroid patients may have an adrenal problem and without discovering and treating that problem you will be unable to benefit from thyroid treatment." (Stop The Thyroid Madness, Janie Bowthorpe)
"Low cortisol causes T3 to work less effectively within the cells. This is because T3 and cortisol are partners within our cells. High cortisol also causes problems and can reduce the effectiveness of T3 within the cells, hence thyroid patients with high cortisol often complain of feeling hypothyroid even when they appear to have reasonable or low FT3 levels. When patients try to raise T3 levels in the presence of low cortisol, they may find that the body compensates for low cortisol by producing more adrenaline. This can cause anxiety, rapid heart rate, the feeling of heart palpitations etc. This is usually the adrenaline response rather than a direct issue with the T3. Very often, it is the low cortisol that is at the root." (Paul Robinson website)
"Whatever you may be told, adrenal insufficiency in thyroid disorders is very common indeed and should always be considered at the onset of treatment. Failure to respond to thyroid supplementation, or actually feeling less well, is likely more often than not to involve the low adrenal reserve syndrome." (Peatfield “how to look after your thyroid”)
"If, upon starting NDT [or T3], you experience symptoms, including anxiety, insomnia, shakiness, sweating, dizziness, feeling spaced out it's a strong sign that you may need adrenal support." (Tpauk website)
Adrenal testing: 4 point saliva test from Regenerus Labs + synacthen test (if doctor will do it!) to rule out anything more than adrenal insufficiency. Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available.
Interpreting saliva results: Morning sample must be the number at the top of the range, midday must be 75% through the range, afternoon must be 50% through range and evening must be below the top part of the range. If anything comes up lower than this, then this indicates low cortisol. (If cortisol is high then this can be lowered through Phosphorylated Serine)
Low Cortisol Treatment (after testing):
According to STTM:
Adrenal Cortex Extract (not whole adrenal gland): On waking 150mg, 100mg at noon, 50mg afternoon, 50mg evening. After 5 days on those doses you can do DATS (Daily Average Temperatures) - Measure BBT 3 times; 3 hrs after waking, 3 hrs after that, 3 hrs after that and add them up to make an average, do this 5 days in a row avoiding ovulation & menstruation. If there is more than 0.2 degrees fluctuation between the temps then Adrenal Cortex Extract needs to be increased. Increase Adrenal Cortex Extract until DATs become stable. If DATs do not ever become stable then Hydrocortisone may be needed. STTM states 25mg/day is a starting dose, broken down as: 10mg on waking, 7.5mg at noon, 5.5mg in afternoon, 2mg before bed. If DATs still won't stabilise then this could indicate an Aldosterone issue.
According to Peatfield:
Adrenal Cortex Extract: Anywhere from 150mg to 600mg in the morning and nothing after midday. He also recommends 20mg of Hydrocortisone for those who are not improved by Adrenal Cortex Extract.
According to Paul Robinson:
Research CT3M (Nb. Many do not find this effective).
Nb. Initially cortisol presence can increase thyroid hormone uptake so much that you may feel over stimulated/strange. Some advise to lower thyroid hormone dosing to let thyroid hormones run down a few days before starting ACE to avoid this.
Do you know if it is possible to get the syancthen test done privately?
I don't understand why both GP and an endo at the Nuffield are not interested in a 9am cortisol level of 262 nmol/L.
Even though this is in acceptable range, the NHS lab report clearly states "cortisol level<420 nmol/L does not exclude adrenal insufficiency".
The NICE guidelines also state "Between 100 and 500 nanomol/L — refer the person to endocrinology for further investigations, including an adrenocorticotrophic hormone stimulation (Synacthen®) test."
yes! You can get the synacthen done privately, I did but it is expensive (+£500). Most *private* endocrinologists will be willing I’d expect but you could use the thyroid uk list to choose someone more thyroid literate it is a good idea to make sure you get -
ACTH + synacthen
Electrolytes
Aldosterone (don’t let them fob you off with just renin)
Adrenal antibodies
to be totally covered.
You are right, it is beyond why they won’t take it seriously ESPECIALLY in the context of your symptopms when introducing thyroid hormone but joined up thinking has never been a doctor’s forte 🤷♀️
I have also been concerned about cortisol. I have asked 2 different GPs about it, and also showed my 9am cortisol blood results to a private endo that I went to see in Nuffield.
They are all adamant that 262 is fine for a 9am sample.
I did the 9pm sample privately as wanted to see how low it drops later in the day.
I have not done any saliva samples. Would this be better than the blood tests?
And even if it is, what do I do? Both GP and consultant completely ignored the 9am blood result.
The NHS lab report states "Expected values at 06:00am - 10:00am are 133 - 537 nmol/L. Cortisol level <420 nmol/L dose not exclude adrenal insufficiency".
That's a very generous 420. According to the eminent AI researcher Wiebke Arlt anything below 300 nmol/L does not exclude AI. The upper range is obviously different. Here is the protocol from the paper "Adrenal insufficiency", Lancet 2003; 361: 1881–93 . If you PM me I can send you this long paper all about AI.
Have they measured ACTH? Have they excluded AI? I think not!
Take an advocate - a spouse, family, friend (SlowDragon said on another thread preferrably male and I agree!) .
Probably will need to go through an endo unless GP can refer you for these tests.
Ask for an early morning fasting draw including cortisol, ACTH, sodium, potassium, adrenal antibodies. Ask to be referred for a Synacthen stimulation test. nhs.uk/conditions/addisons-... Usually renin and aldosterone are also measured but it's not listed on the NHS page. All these require special testing protocols, eg ACTH must be put on ice immediately and then transferred to the lab. So these test should be done directly at the lab preferrably between 7 and 9 am.
AI/Addison's is serious and they're not treating it very seriously.
I'm guessing you don't have central hypothyroidism with that TSH. (Could have been a concern because then ACTH might also be low).
From paper, Panel 4: Biochemical diagnosis of adrenal insufficiency
Heavens above 262 is not OK (assuming this is the standard range?) but additionally important- blood shows what is total, saliva shows what IS FREE (and therefore available - kind of like how you get your FT4 bloods and your Total T4 bloods, it’s the Free we care about).
I must tell you, if you think thyroid support is bad… adrenals is a whole new world of pain. They will cortisol zero credence so sadly it is on us to riddle this out.
A cortisol saliva test is best and cheapest option. In an ideal world you’d have a GP who takes cortisol seriously and sends you for a synacthen test with aldosterone and electrolytes… but for now a cortisol saliva test will have to do. Are you UK? Regenerus do one that includes DHEA, which is another useful measurement.
Hi dontforgetcortisol - and please don't take what I'm about to say the wrong way, because I am 100% behind everything you say. Just I got burned a bit by some advice a long time ago and I want to avoid that others go through this.
I had/have adrenal insufficieny and didn't insist enough to get a stim test. So I went the "easy" way and visited some holistic docs - they did a urine test, and i did a saliva test. Cortisol was obviously way too low. So we started me on hydrocortisone. But because I never got the stim test, I fought multiple endos and GPs over the last 13 years to convince them that I really did have Addison's. Saliva tests did not convince them at all. I finally had an antibody test a few years ago that showed adrenal antibodies , so that sort of shut them up. But it's been really really difficult. I know I am not the only one in this position, though maybe the only one on this forum.
So when people are very obviously low on a serum cortisol test, I now always advise people (in my nonmedical opinion) to push for a stim test first before exploring alternative routes.
And I know you are not advising people go and self-source cortisone! (Other forums do!) For those with slightly stressed adrenals because of low T4/T3, I think alternative (non-cortisone) routes are perfectly fine.
But in any case, just to explain why I hammer on about getting proper testing first. Sorry if this comes off weird. I just felt the need to explain LOL.
Nooo! Don’t feel bad at all, I am so happy to find someone else on the forum who will take cortisol seriously and actually discuss it with me!
The problem is that with a blood cortisol technically in range she will really struggle to get a GP to do anything for her, a synacthen test is quite a big ask in the UK, it’s tantamount to asking for T3 or similar 🙄 it absolutely shouldn’t be this way, but it is. I personally ended up going privately and presenting my reasoning for why I thought I had AI and begged for a synacthen, but I am aware not everyone has the financial luxury of going that route and therefore try not to suggest it (I used to all the time but got a bit hammered for it 😅)
The other thing that I am always wondering about is the 2 ways that someone with thyroid disease can develop AI (actually there are 3 right? But let’s leave tertiary hypothalamus). I am sure you already know this but just for clarity - There is secondary - where the pituitary is “lazy” (for lack of better word!) and often this is a product of low cellular T3 because pituitary has become hypothyroid and isn’t sending enough ACTH signal to the adrenals and then there is primary where adrenals themselves are under performing. Often people can recover their adrenals by just introducing thyroid hormone, and this then corrects secondary AI - so I always think that for that reason the softer “holistic” approach is better taken first.
But now I am chatting to you, I have posted on here all about my adrenal journey if you want to read about it, it would be very interesting to compare notes. I failed my stim test but only by a fairly narrow margin and I am STILL waiting on adrenal antibodies results but am on HC now. I don’t want to hijack OP’s post so perhaps I will DM you with your permission?
Awesome! I am very happy to discuss further on a new post or DM. If others would be interested, the forum is maybe better for general discussions? either way! I'm just extremely lazy with DMs for some reason.
I'm so sorry you all in the UK have it so rough. My heart breaks when i read stories like this.. or TSH >4 is fine, or 4 B12 shots a year will keep you healthy. I shoukdn't be shocked anymore...
Anyway yes i'm definitely interested in the T3/adrenal connection. I got P. R.'s book when it first came out but i see you got some very bad advice so we can use other references to discuss!
So sorry to hear this. This wouldn't happen if we didn't have to fight so hard to get good medical care. Then we wouldn't have to keep finding our own way when critical things may get missed, as you describe. It's pretty irresponsible of the holistic doctors that they didn't recommend you get the formal test as well.Can understand your your concern.
Thank you both very very much. This has given me lots to think about.
The most debilitating symptoms that I've been experiencing are completely new to me, and seem to point more to a cortisol issue. My 'thyroid symptoms' I am familiar with, and almost used to having (at varying degrees of severity). My TSH was >100 when I was first diagnosed and it took a long time (and the introduction of T3) to recover from that.
This extreme tinnitus, blurry vision and confusion is a new one on me.
The times that I have tried taking a T3 tablet, the response has been so sudden and severe that I even went in to A&E once. Extreme shaking, palpitations, massive surge of pressure to the head and disassociation.
I guess the next question is whether I have true adrenal insufficiency, or whether my adrenals are just struggling due to the thyroid issue. But if cortisol is the reason that I can't take thyroid meds, then how would I ever know whether sorting out my thyroid will sort out my cortisol levels as well.
I will follow the advice from jade_s around trying to get tested first, although not sure how much luck I will have. Is it possible to pay for the early morning blood tests and the synacthen test? I will happily do this if it is the only way.
I guess results of this testing will then guide the next steps in terms of addressing the low cortisol levels.
I will also start on folate and ferritin supplements as I have no doubt that this too will also be contributing to how generally awful I feel.
I've got more info here in one afternoon than I have in nearly 4 months of GP visits.
The dissociation, tinnitus and trembling were big low cortisol symptoms for me when I tried to add T3 to my T4 - along with dreadful anxiety with suicidal ideation, it was extremely bleak. I agree with jade_s , it could be “true” AI if you are feeling the need to go to A and E. Either way, cortisol support/replacement sounds likely needed for you. If you can afford private testing, this will be the quickest way to get answers and treatment. I can chat to you on DM about particular names as we aren’t allowed to exchange them on the forum. It can be complicated because if you do have “true” adrenal insufficiency, you may need steroids and it is best to have that managed within the NHS because being steroid dependent is a serious state of affairs that private health care doesn’t have the accommodations for (for instance if you can’t take your steroids for whatever reason you will need emergency injection etc.) but I don’t want to overwhelm you or get ahead of myself as we don’t yet know what is going on exactly, I just mention this to highlight that getting testing and treatment will likely require a mixed effort between private testing and NHS treatment. Initially I actually self-treated because I was getting so dreadfully unwell and had no support but NHS did step in and now I am managed by a good NHS endo. In any case, as I say do feel free to DM me if you’d like to. X
A&E consultant looked at me like I had 3 heads when I said that the symptoms only get that severe when I try taking my thyroid meds. His words were "well, that shouldn't happen - odd isn't it".
I just noticed the last line of the post "Four months ago, I was a busy mum of two, playing regular sport and holding down a successful career." Also sounds familiar...!!
absolutely there is more going on here. It’s a disgrace that she must resort to forums for this advice, I am appalled. While being hypothyroid is debilitating and miserable in many ways, low cortisol is life threatening.
Just on another note. Do you have an actual diagnosis of Atrial Fibrillation? If so, are you on heart meds? If AF is not your problem (apparently it’s much rarer than doctors wet themselves about in connection with thyroid) you are in a better place to take your time with all this. I can’t understand that if you have AFib your doctor is not taking a much keener interest. I know they seem to just hate dealing with hypo patients - they have little or no patience with them - endos the same but usually they all literally wet themselves with heart symptoms/or not when they come to the limit of their knowledge. They might get sued after all. I may have missed this info in your post - apologies. It would be good to get that investigated and be able to put it aside. There are a good number of different types of AFib but as I understand it they are all treated. Patients are not usually left without help - even if it’s only ‘A Pill in your Pocket’. If you have no diagnosis, I think it’s important you do get one. The way thyroid meds act (in my experience) we can turn on just about any symptom it’s possible to consider and more!
I’m so sorry that you are suffering hugely and I’ve read some of the responses.
One of the things I wanted to enquire was your age (46?) as I wonder if some of the symptoms were also exasperated by the onset of the menopause - being so hormone related.
I hope you get to the bottom of this - but please believe that at some point you will return to how you were before.
I had a very similar experience. I’d stopped taking levo after being over medicated by my GP who later admitted he knew nothing really about the thyroid. I ended up in a right state. Even taken to hospital and 3 sep occasions who didn’t have a clue either. I really struggled to start taking levothyroxine again. Every time I took it about 1-2hrs later I’d be on the floor literally. I experienced what I felt was massive adrenal spikes. I think it was my body going crazy grabbing the T4 levothyroxine to get me better. But that’s just my thoughts. What I did was take half my dose after the midday cortisol drop at noon. My cortisol had gone very low too. Then the second half about 5pm. It actually worked. No Dr told me to do this I was just trying to get the levo back in to my system. What I’d say is take it slowly but regularly. Do not give up on taking it. My symptoms died down but it took a few days to a week. Your body is desperate to use the T4 and get things balanced again. The one thing that helped me considerably was also switching to liquid form levothyroxine. Ask your Endo or GP to switch you to liquid which is way better at absorbing and you can manage your dose much easier than tablet form. Or in the meantime crush you tablet and take it with jam or milk or yogurt. I can’t stress enough how important it is to get the T4 back into your system. Your Gp is crazy to say don’t take it. Take even a quarter dose 4 times a day ease it in gently Our bodies don’t make T4 in one hit a day it’s a gradual thing
After this situation I found I’m a very poor converter T4 to T3 and prescribed T3 medication too I’m now regimented with both medications
I’ve not had your experiences re symptoms but I have had a decade of trying to fathom so many autoimmune disorders as I have 3 and medical professionals suspect more… rather than getting to the crux of what I already have and prescribe correctly maybe, constantly ignoring and looking at ruling out other things … which is helpful but long wnded.
I’d like to cover few areas.
Age are you at all perimenopausal visit Dr Louise Newsons Balance web page or get Balance app. Without going into loads of detail you may want to check this just to rule out and by far simplest place to start.
Thyroid I think has been covered in other posts and symptoms of under and over are very similar… if me I’d be inclined to gradually increase dose Levothyroxine and get your GP to organise heart monitor for a week regarding the Afib and see from there … long wait for one a friend of mine waited 6 months so sooner get that in place better… hopefully more will be done in this area if anything found and relieve some of the understandable anxiety this will be giving you and won’t be helping you one little bit with having this uncertainty… ask GP to rule out these concerns.
Adrenal again been covered, and many ups & downs with thyroid conditions are linked to Adrenal and likely autoimmune issues haven’t been looked at due to steady cortisol response but doesn’t give you a complete picture. I have had synacthen test and passed it as all fine, but doesn’t mean I haven’t had lows and insufficiency and crashed in past or highs either.
You mentioned neurological and felt that gluten free or dairy wasn’t needed… Re gluten, Have you had coeliac test? If not ask for one. Coeliac U.K. is great place to read up re before testing and more information on what other symptoms coeliac disease can give .… coeliac disease isn’t just a digestive disorder it can cause neurological symptoms and maybe an area over looked because asymptomatic for digestive problems… this was me and leads me on to low nutritional status because of coeliac disease, with areas like Folate and ferritin due to my absorption issues … no matter how good my diet is I need to periodically supplement due to absorption problems… and being perimenopausal my iron but also B12 Vit D was dire too…my insulin levels were a bit high another hormone which can interfere with others, so maybe check your ok in this department too.
Are there any other medications that you take or have taken that give these side effects with or from withdrawal. Have you had covid or ruled out things like Meniere's for the ringing in ears etc
My hypothyroidism/Hashimoto’s problem is muscular predominantly almost being housebound couple of years ago , so know how very frustrating and how quality of life suffers… so I do hope you get the answers quickly and resolve some areas.
Hi GP46, I really feel for you as over the years I know what it's like to be bedbound, unable to walk, zero energy and aching all over due to thyroid issues, I've always been complex.This was just my experience and don't know if others have had similar but 6 years ago after being stable for a few years I couldn't tolerate taking my t3 anymore. It wasn't working, upping, downing or stopping I felt was back to square one and had to stop.
Having gone to a brilliant private endocrinologist who I didn't realise was a fantastic menopause specialist too. Straight away she knew I was perimenopause and this was causing my problems. I wasn't having hot flushes or night sweats and still having periods so never gave it second thought.
Longshot but perhaps this could be a factor?
Hope your Endo/GP get to the bottom of this and quickly. Being unable to function with a young family to care for is soul destroying I know.
Hi - yes, this is definitely also a consideration. It was probably my first thought when I first went over-active despite being on the same dose of levo and T3 for 4 years.
I thought maybe that after allowing the over-active symptoms to settle, I would eventually end up back on to a dose slightly lower than I was on before.
Never did I think that 4 months later I still can't take anything.
Strangely enough, I did ask my GP to run FSH, LH and Oestradiol tests. She agreed to do this, but when the results came back she just said "All fine".
She didn't even know what cycle day I was on when the bloods were taken, so not sure how useful this was.
I would be really interested to know which private endo / menopause specialist you saw. I don't suppose you would mind sharing via DM?
I have got to the point that I will travel any distances or pay whatever it takes to get some help.
Blood tests in perimenopause aren't very useful as levels fluctuate constantly. Can 100 one month then in the thousands the next. This is why we're all over the show in peri.I have struggled so much trying to balance on both thyroid hormones and sex hormones. Only recently do I think I've achieved it
Thank you. Yes, understand the difficulties with blood testing. I would have no idea where to start with any sort of HRT approach, and whilst there is a possibility it may help me on the one hand, I have such a complex picture going on at the moment, HRT would likely confuse matters even further 🤷♀️
Agree with other comments re potential menopausal symptoms if that might apply to you.
Otherwise your Ferritin is a major flag for the palpitations and anxiety. At 16 it’s considered severely deficient. I respectfully disagree that you shouldn’t supplement as even if your Haemoglobin is high your Ferritin store will be replaced first (trust me, my Haemoglobin always sits at top of range and my Ferritin at bottom - I’ve had 2 iron infusions and both times my Haemoglobin fell slightly afterwards with my Ferritin going up and that was what the Consultant expected). If you have the means and are near a clinic, I’d go private for an iron infusion as a Ferritin of 16 will take months to raise any other way.
I always wondered how many others had experienced the same thing because whatever you're going through, someone else has gone through it too. Due to life being so busy and bad advice from a naturopath, I became severely overdose on Naturthroid and suffered similar symptoms back in 2017. The weird thing was that when I finally got around to checking my TSH, it was 0.73, which isn't all that low. My M.D. said I needed to lower my dosage, but my Naturopath said my TSH should be as close to 1.0 as I could get it and 0.73 was good. So, I kept taking it, but odd symptoms I was having started getting worse and I couldn't sleep. I decided to lower my dosage by .25mcg and luckily it was my day off because that's when the fun began. I got hit with something similar to a panic attack, but I was paralyzed and couldn't move away from the kitchen counter which I was holding on to for dear life. I didn't know what was happening to me and I don't know how long I was stuck holding the counter. Eventually the episode subsided and I was left with a generalized hum of anxiety. Everyday about 2 hours after taking my thyroid medication I would get severe anxiety and started taking Xanax to get through my work day. I rechecked my TSH and some how it had dropped down to .009. I asked the naturopath how my TSH could become lower after reducing my medication instead of going up. He said he didn't know. Over the course of 6 months I continue to lower my medication and skip doses because I always felt better when I didn't take any thyroid medication at all. Unfortunately, I got a virus that took me completely out of the game by triggering chronic fatigue syndrome and fibromyalgia. If my adrenals hadn't be so taxed by being over medicated with thyroid hormone, I'm sure I would have recovered from the virus like all the others that I have recovered from. It took me over a year to recover enough to go back to work part time and then I got overdosed again and haven't worked in over a year. I believe you will recover, but not as fast as you would like. During my years of being "ill", I read everything I could get my hands on and joined this group. It is my opinion, from everything I've read, that people from weak adrenals, people who are stressed out, don't recover as quickly from being overdosed on thyroid medication. I never did find any help from doctors or naturopaths. My main focus was feeding my nervous system and trying to calm it down. I feel that my body/ nervous system was too weak to handle taking thyroid medication, so I took a fraction of the amount I needed and worked my way up until I finally fell in normal range. It took 14 months for me to see a TSH in normal range and shed the horrible symptoms I had from taking thyroid medication. I hope you recover far more quickly.
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it is a good idea to make sure you get - 
Medication, joint pain and muscle cramps
Stopped levo - now only on T3
One year on and somehow I'm nearly back where I started.
back to Levo and T3 
