Hello,
I'm wondering what kind of symptoms people have experienced on a levo dose increase.
I'm 12 days in on a 75 to 100 dose after about a decade of being on 75.
I'm aware of people feeling wired, more anxious, palpitations.
Anything weird or wonderful you can recall encountering along the way?
I always felt sick, loss of appetite, generally ill weeks 2 and 3 of any increase in particular.
Thank you Lalatoot.
If you feel that you really need the increase hang in there for 6 weeks and do bloods. Too often I've given up and then had to go through it all again because I really needed the increase Try not to second guess what your blood results will be from your symptoms either. The symptoms of over and under medication can be the same so don't change anything untill you see those blood results to confirm the next step.
Thanks that's good advice.I feel I've got to know how I will feel when established on 100, otherwise I will never be able to rule it out.
So I'm ploughing on.🙂
As the others say stick it out for the 6-8 weeks and retest.I know first hand how hard it is to be patient when changing dose.The hardest part for me is getting to know my symptoms of under/over medicating as many of them crossover.I reduced my dose lately and i was wiped out for the first few days.
That’s so true SovietSong I can feel tired and weak on too high a dose and something similar on too low.
Hi Hashiboy, have you managed to find a settled dose on your meds now?
SovietSong Yes 75 is low and I asked for an increase in the past, but lacked the knowledge I've gained here to really push for it.
I've never felt well since I was prescribed it, diagnosed with nonsense CFS label years ago and have had muscle aches, tired but wired feeling, and crushing fatigue. Lately dizziness and head pressure and other things which could be low vit and mineral so trying to sort that out too.
Yes I can certainly relate to the muscle aches and the fatigue.I agree 100 % about the lack of knowledge.I just took my GP's word as gospel but I feel much more clued up now because of this forum and fantastic people on it.I wonder how many people out there have been fobbed off with antidepressants and painkillers due to the doctors lack of education on thyroid issues? I bet the numbers are staggering.
Yes 130.000 plus members, even if only half have issues, is a huge number of people.We do take their words as gospel, don't we? They are supposed to know. Thyroid = pretty common issue I would have thought, for a gp.
Funny, I've not particularly associated the muscle aches with thyroid per se, as I've had a lot of adverse emotional stuff to deal with, so I've put the tight muscles and aches down to that. But I keep reading here about anxiety being related to thyroid too- maybe I'm not as messed up as I thought😁.
Have you recovered from the wipe out with your dose drop?
Yes I'm just about there now.But those few days were not pleasant.I was in bed early evening and could barely lift my head next morning.Your defo not messed up, the muscle aches I find a major symptom along with the brain fog.I just couldn't think straight or concentrate.
That's really interesting about the aches in particular. And today the brain fog - is a real pea-souper! I'm glad you're starting to have some relief 👍👍
Sneedle Hi there, just to echo SovietSong I get terrible muscle pain when under medicated, especaily in my legs and hands, Im hypothyroid and previously been hyperthyroid and my experience is that being over equals jitters and anxiety and under is super sluggish thinking and low mood - I'd add irritability but that might just be my character .
That made me laugh! Much needed at the moment.Thanks for your take on symptoms, I'm going to remember it for when things are more settled dose and vitamin and mineral-wise.
I've had all of them at the same time in varying degrees for many years (tired but wired and cfs 'diagnosis') and since the dose increase, the fatigue has been terrible.
Which has confused me.
But there are other factors involved (recent strong antibiotics, adrenals maybe, mental health) which are muddying the waters right now.
Being able to come here definitely helps start to sort stuff out.👍🙂
It's madness really, ten years is a long time to be on 75mcg while you were experiencing those symptoms.Which of course could have been avoided had you been increased to 100 some ten years ago.It may even be possible after this 6-8 week period you may need 125mcg.Anyway good luck, hopefully this increase does the trick.
I can agree with virtually everything that has already been said. “Weird or wonderful?” At 75mcg levo I ‘acquired’ pulsatile tinnitus. I have had it since, must be well over a year now. It particularly drove me mad whilst trying to sleep. Bought a white noise machine which helped a bit. However the game changer was the CPAP machine. My theory is the machine helps with the ‘collapsing’ tissue in throat/head/ears and off course breathing difficulties, due to hypothyroidism itself. I also, thankfully, sleep much better now. An absolute for better health/life. I can now sleep for usually a minimum of six hours per night (sometimes more - heavenly) after about a good forty years of very poor sleep (or none at all according to the sleep clinic) and about ten years before that of waking with rapid heartbeats, probably due to thyroid trying to produce enough T3 to keep me going.
How strange about the tinnitus. Has it remained through a further dose change or are you still taking 75mcg? I've had it for quite a few years, not pulsatile I don't think as it's a steady highish-pitched hiss.
Wow that is brilliant the CPAP has changed so much for you. Awesome when something works!! I don't know anything about breathing/sleep problems in hypothyroidism but just read a little about sleep apnoea - the 'collapsing' muscles get in the way of the air going down into your lungs, narrowing the passage? Do they 'collapse' because of thyroid issues?
I am certain the ‘collapsing’, the inability for the muscles to do their job is due to hypothyroid issues. I was not overweight when my original sleep issues started, but unfortunately I am now. Most of my other muscles also seem to be affected, including my heart. My muscles just do not do the job they are designed for. Consistently low T3 for me seems to be the root cause. From what I read, brain, heart and muscles in general appear to need and use lots of T3. Eventually I will fill in my bio but for now I am still trying to get things right!
I agree “Awesome when something works!!”
Eventually I will fill in my bio but for now I am still trying to get things right!
Snap!😃
Know where you're coming from.
I'm doing the same investigations and learning for my daughter who is due to start university in about 7 weeks and trying to get her health to a level where she has a chance of staying there.
It's a big challenge and a massive worry (she's been ill for a few years, you may have spotted my posts).
So maybe I need to look at my adrenals next🫣 don't want to look!
Yes. It just seems never ending the stuff we need to attend to. If we don’t get properly medicated it has an effect on our vitamins and supplements. AND if we don’t get adequate supplements both our thyroid situation and our vitamin situation is worse.
It’s good you are looking out for your daughter. My Mother (I can now see) tried to look out for me too but I can understand now how she never got far. Her Mother had to go into an asylum for a while and I have no idea whether she was actually treated for hypothyroidism or not. However she lived till she was eighty, walking the roads which I am certainly unable to do! My Mother too I am certain was undiagnosed hypothyroid.
We and our daughters and granddaughters (and men who are unfortunate to experience hypothyroidism) deserve better.
Waking with a racing heart is due to the oxygen deprivation in sleep apnoea triggering the release of hormones (which can also result in the need for a trip to the bathroom). It's at the extreme end of the scale, as those with sleep apnoea can have disruptions to their breathing dozens of times per hour, which aren't severe enough to wake them.
My experience exactly. My sleep test showed ‘episodes’ 47 x per hour. In fact when I briefly was on T3 the actual waking (as opposed to the not waking type episode) was significant and ‘exagerrated’ just as it used to be many years ago. If only I had understood this mechanism - an explanation from medics would have been useful - where else are we going to get this? T3 briefly ‘toned’ up the mechanism which I think I would have got used to, if I had half understood it, if my T3 levels had been allowed to improve. However I did not and my private endo refused to treat me further, wetting herself that I was developing atrial fibrillation. Why don’t they know these things? Talk about gaslighting the patient? Just as a matter of interest, do you know which hormones are released in the circumstances? Feels like adrenaline. Thanks for that clear explanation, I have not seen it written so clearly before, no doubt due my complete abhorrence at the idea I needed a CPAP machine.
"The postulated mechanism of nocturia in OSAH is that the negative intrathoracic pressures resulting from occluded breaths cause distention of the right atrium and ventricle. This right-sided cardiac distention results in release of atrial natriuretic peptide (ANP), which inhibits the secretion of antidiuretic hormone (ADH) and aldosterone and causes diuresis through its effect on glomerular filtration of sodium and water." -- that covers the need to pee.
ChatGPT provided the following:
When oxygen levels drop and carbon dioxide levels rise due to breathing disturbances, the body activates a mechanism to wake the individual and restore normal breathing. The hormones involved in this process include:
Adrenaline (Epinephrine): Sleep apnea triggers a "fight-or-flight" response in the body due to the lack of oxygen and increased carbon dioxide levels. The adrenal glands release adrenaline (epinephrine) as part of this response, which helps to increase alertness, heart rate, and blood pressure. The heightened state of arousal prompts the person to wake up and resume normal breathing.
Cortisol: The stress hormone cortisol also plays a role in the body's response to sleep apnea. It contributes to the activation of the body's stress response, promoting wakefulness and aiding in the restoration of normal breathing.
Norepinephrine: Another hormone involved in the stress response, norepinephrine, is released in response to the physiological changes caused by sleep apnea. It contributes to increased alertness and arousal.
Serotonin: Sleep apnea can lead to disruptions in serotonin levels, which are neurotransmitters involved in regulating sleep-wake cycles. The changes in serotonin levels can affect sleep architecture and contribute to arousals during sleep apnea episodes.
When I first had a cardiology appointment in 2015 I'd recently started using a CPAP, and said that, as I wasn't needing to get up in the night, my leg oedema was worse. The cardiologist (now a professor, overseas) pooh-poohed the idea.
Another cardiologist had put me on a beta blocker due to palpitations caused by starting doxazosin at double the recommended dose. The concurrent increase in levothyroxine dose took the rap, but I've subsequently had higher doses and lower TSH for years, and never had palpitations again. The beta blocker immediately caused what I think I can call central sleep apnoea. I was dozing off in hospital and waking, gasping for breath, with the realisation there was no respiratory drive (temporary paralysis of my ribcage).
Although I acknowledge I have obstructive sleep apnoea, and now have a high BMI, I know I had the problem in my 20s when I was fit and active, and people told me I was too thin. My problem is mainly due to nasal obstruction, and the sleep clinic has been of no help in that regard. I've heard the NICE guidelines have been updated (or published, for the first time?), so I must check out the current thinking.
I should be seen at a lymphoedema clinic for my legs, but that is a "Cinderella" area of medicine, and rationed in my area by BMI. Sleep apnoea can be due to high BMI, but patients need the treatment, it shouldn't be rationed. With lymphoedema, there can be potentially life-threatening skin infections, even in cases like mine, which are comparatively mild, but these are less likely with the preventive aspect of having a clinic, a bit like dentistry.
One issue I had with taking T3 or desiccated thyroid extract was the disruption to my sleep cycle and hence poor sleep hygiene, so fewer hours' benefit from my CPAP.
Well thank you for all this info SmallBlueThing. It’s great stuff. I too am experiencing swelling in legs fairly recently. I have never had fat ankles and I am seventy. I have had the mucin (got rid of some during a short foray into T3) for a long time but this is different. I think I said too, I definitely had this problem with the waking with a racing heart long before I became overweight. What a mystery we all are to the medical profession. I have never come across much about this even under CPAP info, never mind in connection with hypo, although many of us suffer this too. Our doctors treat us for separate conditions, when really it’s all related.
Yes and less getting up to pee (fantastic/less sleep disturbance) but all this ankle swelling only recently started when I really became able to use the CPAP machine! Damn.
You're not taking a calcium channel blocker (drugs ending in "pine") such as amlodipine, are you? They can cause swollen ankles.
As a matter of fact I am. 10 mg? daily. I am aware of this phenomenon and I have been taking Amlodipine for about seven years (I think) and this has only happened on the odd occasion. It’s now happening more often. I am struggling with a good few heart symptoms acknowledged by cardiologists as being created by hypothyroidism but unable to be translated into treatment because of the protocols around thyroid treatment, particularly around T3. It is frankly negligent, IMHO. It limits what any sensible doctor might prescribe for me, as I live in a strictly no T3 zone. It’s clear I can’t convert etc etc. However thanks to your explanation, I am gathering more and more info. Why they just tootle along prescribing for additional ‘single’ disease processes when they are all related defeats me. Proper, thoughtful and caring treatment for hypothyroidism I think is key.
P.S. I have saved this post with the excellent description of sleep apnea underlying effects!
my daughter gets exactly that about that time into a dose increase..then it settles down and she starts to feel the benefit.It is almost like her body hasn't started making proper use of the extra T4 and it is just sitting there making her feel wired...then it starts getting converted and shared out where it is needed. This is not based on medical fact..just how we kind of view it
Thank you that's so interesting your theory about T4 sitting there. I know I'm a poor converter (not from genetic testing but using the calculation mentioned on Paul Robinson's site and elsewhere I think) so maybe there is a build up going on for now.
What is confusing me I guess is that at the moment it's all crushing fatigue, aching muscles, dizziness ie. more hypo than hyper symptoms.
But then there is lot to muddy the waters, recent heavy antibiotics and bacterial overgrowth, rebalancing my gut. So an onsluaght of change for my system, I've just got to wait it all out.
In the meanwhile coming to this friendly forum is a godsend, it's starting to feel really cosy!😀
it is so hard to separate everything isn't it?...when one thing goes out of whack, the rest follows and putting it right takes longer. Your Gut and vitamin levels are vital too. We too have gut problems...which then affect absorption of both your medication, food, and any supplements. When my daughter was first diagnosed, we were told getting healthy is never a quick fix with this disease and patience was required. Boy have we learnt that is true. Take heart though, she now often goes a very long time feeling well..a good three years this time before her most recent blip....which has since taken 6 months to recover from grrrr
It is possibly her body creating more cortisol to adjust. I have heard it said that day 9-14 after a thyroid hormone raise is the day when adrenals are at their most vulnerable.
that is really interesting, thanks x
Oh if that's the case for me, then I'm right in it🥴.It's very very interesting - can you remember where you heard it?
Thanks for your 'investigation protocol' above, so much information.
I had a medichecks saliva test last march as I didn't know it isn't much use.
So I'm a bit loath now to spend more money on regenerus.
I'm trying electrolytes (ors) to see if that helps and might try a teensy bit of potassium if ors suggests I might need it. I seem to have no capacity to hold on to electrolytes since the stupid menopause 😠
Not holding onto electrolyes is a strong sign of adrenal issues, particularly aldosterone. Where are your levels at?
Last March’s saliva cortisol will be quite irrelevant now ☹️ if your symptoms of intolerance to thyroid hormone persist I would make a saliva panel a priority. I avoided addressing cortisol for 3 years and I so badly wish I’d gotten onto sorting it sooner. X
Good advice, thank you😊.
I don't have any adrenal results except the Mar medichecks one.
So I'm now pondering going for a regenerus or perhaps the hair one .
I've messaged them to ask for a sample report to see if it's at all useful.
I'm not sure which of my symptoms relate to what (if that's Grammar) as some of them eg. the dry thirsty tongue wanting electrolytes, and the dizziness, pre-date my dose increase.
I don't have any wired or anxious feelings or increased palpitations (had those before dose increase too).
A right pickle.
Yes I’d love to see a sample report too, it does look good in theory as anything that tells us more than just a snap shot is very useful!
Thirst, dizziness, palpitation, wired and anxious can all be adrenal issues with or without thyroid hormone x
Found this from 2021loopsouthwest.co.uk/home/20...
I've been titrating up on new levels for two years now and every time I've had gut issues. Occasionally the odd sense of being wired but luckily no palpitations. Usually disappears two-three weeks in like many of the others here.
Do you have a heart rate monitor/Fitbit? Might provide clinical evidence of heart rate fluctuations if you need it when discussing your upgrade. I often show the docs mine and they seem to take more notice of that than what I am saying. It also stops me worrying when I can see there are no major spikes.
Hello SilverSavvy, thanks for your reply.
I don't have a fitbit or monitor but it sounds like a good idea, if they aren't too expensive. I'm a bit wary of becoming obsessed and looking at something like that every two minutes!
But I can see it being useful at the gp's, yes I can just just see them paying the tech more attention than the patient!
Sneede,
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.
Low cortisol symptoms (these are not exclusive to low cortisol):
Negative or no response to thyroid medication
Chest pains
Nausea
Fatigue
Insomnia
Waking through the night
Anxiety
Depression
Abdominal fat
Poor stress tolerance
Weight gain or loss
Tinnitus
Low blood pressure
Dizziness on standing
Sensitivity to light
Palpitations
Thumping heart beat
Menstrual irregularities
Hypoglycemia
High or low appetite
Headaches / head pressure
Pigmentation / melasma
Burn in the sun instead of tan
"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 is good if you suspect moderately low cortisol.
If you think you have a more profound cortisol issue then you need to ask your GP for -
SYNACTHEN
ALDOSTERONE
RENIN
ELECTROLYES
ADRENAL ANTIBODIES
Blood tests are inferior to saliva tests because bloods show what is total, saliva shows free and therefore available. But bloods are still valuable and a very important step in ruling out anything more serious than adrenal fatigue.
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)
Interpreting blood results:
A 9am morning cortisol results needs to be in the top 1/4 of the range at least, anything less can be indicative of adrenal insufficiency and needs to be followed up by your GP.
A synacthen test is where the adrenals are artificially stimulated by ACTH (the signal that comes from the pituitary to the adrenals) to see what adrenal hormone you can produce. This test will show you whether you have a primary (with the adrenals) adrenal issue, or a secondary (with the pituitary - therefore the signal that is sent to the adrenals and not the adrenals themselves) adrenal issue. If ACTH is low this is indicative of a pituitary issue (secondary adrenal issue), this can often be rectified by incorporating T3 in your treatment as the pituitary is particularly T3 reliant. If your response to the synacthen is below 420 and/or does not double from the previous result then we can assume a primary adrenal issue.
Aldosterone is a steroid created in a different part of the adrenal cortex. If this comes up low and renin high in conjunction with low sodium then this is further suggestive of a primary adrenal issue (so the adrenals themselves).
Low Cortisol Treatment (after testing):
If you fail a synacthen test this is indicative of adrenal insufficiency and steroid replacement of hydrocortisone will be warranted. This is usually in the realm of 20mg-40mg a day, if Addison’s antibodies are present this replacement will be for life. Sometimes Fludrocortisone is also needed, this is usually around 0.1mg. If you are placed on Fludrocortisone you will need to watch potassium levels, and ask your doctor for extended release potassium if your potassium drops too low. It is also important to invest in high quality salt and liberally use it.
If you have low cortisol and low ACTH but pass the synacthen test this is indicative of a secondary adrenal issue - an issue with the pituitary. This can often be rectified by T3, it is worth trying Paul Robinson’s CT3M for this.
For mildly low cortisol -
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.
Adrenal Cortex Extract brands: Adrenavive, Thorne, Klaire Labs
Have you come across this adrenal hair test by the way?cortigenix.com/
It says it gives a 3 month view of your adrenal stress response as opposed to a snapshot in saliva.
I'd be interested in your view. I haven't looked in depth at the test result and what it actually tells you.
I’ve never heard of it! Thank you for sending it over, I’ll do some research now 🙏
I'm aware of people feeling wired, more anxious, palpitations.
I’d implore you to research “low cortisol thyroid hormone” - these are classic signs.
Hi dontforgetcortisol,
I'm mulling an adrenal test since our exchange of messages as I've been feeling so rough. Seeing GP tomorrow and will raise adrenal insufficiency (I do have some hyperpigmentation now that I've checked so I definitely need to ask), diabetes, menieres and anything else I can think of between now and then.
Does having one with CAR make for a more useful test do you know? They are more expensive.
I also found this one
file:///C:/Users/c_wat/Downloads/Sample%20Report%20HOR32%20DUTCH%20Adrenal%20Metabolism.pdf.pdf
on the Regenerus website. It's a lot of money and I'm wondering if I or anyone else will be able to interpret it. I do go to a nutritionist and naturopath who is very experienced so I could ask her view.
The dizziness and strong 'unwell' feeling and salty sweet cravings and fatigue crashes remain, been bad today. I'm not driving (again) and am stuck at home going from sofa to kitchen and back again! I'm on day 18 of levo increase to 100mcg, so four days past the 'most vulnerable' stage for the adrenals which you mentioned.
Dose increase ? 
dose increase? 
Average Levothyroxine dose?
