I have had severe reactions, terrible nausea, fatigue, brain fog on levothyroxine. I've tried to up my dose, lower my dose, take at different times but I can't tolerate it at all. My doctor has informed endocrinology and I've had to come off all meds.
Has anyone else had this problem and were you prescribed an alternative that's worked that you are able to tolerate.
LCO55
Presumably you've only tried tablets? Have you tried different brands because it's often the fillers the cause problems rather than the levothyroxine.
There is liquid levothyroxine, much more expensive so they may be reluctant to offer it but it's helped some members who can't tolerate the tablet form.
Yes I've just had tablets so far and tried many brands all with the same effects. I was told the liquid form was unlicensed. My doctor has written to endocrinology to ask if they have other options. So hopefully they'll come up with something, as I'm now on no medication whatsoever.
LCO55
I was told the liquid form was unlicensed.
Well, whoever told you that is talking out of an orifice other than their mouth. Read this whole article and specifically the part quoted below:
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
So if it was a medical professional give them the link or print the article for them.
Thanks for this I'll pass it on to my doctor and see what they say. I've discussed this with the pharmacist at the surgery but was told they had to get the go ahead from endocrinology.
Typical really.
Sorry you're feeling rubbish. I know the feeling.
Firstly:
There is liquid levothyroxine which the endocrinologist can prescribe.
You say you've tried many different brands of levothyroxine. From your posting history I'm assuming trying all those brands must have occurred in a relatively short window (forgive me if I'm wrong). It can take many weeks to adjust to one brand by itself.
And when switching brands you tend to go backwards a bit (or crash badly) in terms of symptoms before 'levelling out' again.
Lots of changes in several months will leave you feeling like you're on a rollercoaster and stymie any progress.
Some people just don't take to levothyroxine or a better way of saying is, they respond to it physiologically, but not well enough at the cellular level to mitigate symptoms. Anecdotally, it seems people who have been undiagnosed for many years with a highly elevated TSH more often find the sudden introduction of levothyroxine more difficult or even impossible to tolerate.
But a dose of 25mcg just cannot tell you if you are one of these people as it is FAR too low for an adult person with a TSH that high. I had a TSH around your range and 25mcg (Mercury Pharma) was like popping chalky sweeties, I felt nothing at all and eventually left them in the cupboard.
50mcg left me feeling utterly rubbish. I became seriously depressed. 75mcg was the worst of all. My body really cut off its natural hormone supply and yet the 75mcg levo was nowhere near enough to replace my natural hormone production.
You need to replace your hormone supply. When the brain senses there is supplementary T4 hormone it goes, 'alright, I don't need to stimulate this struggling thyroid so much' so it winds down it's own production of T4 hormone.
Now imagine what happens. You are more hypothyroid than you were before.
I started to realise this and upped my levo myself as my doctor didn't understand. I need well over 100mcg levo just to be able to think and starve off myexodema.
Feeling nauseous happens when simply not on enough thyroid hormone. It happens to me when I stop all meds or are on low doses. I also get dizzyness, high temperature, headaches cramps and a voracious appetite, followed by a total inability to eat and no desire for food.
I think you ought to perhaps be started on a considerably higher dose and tritiated up more quickly. Only when you're on a decent level can you be sure that you just can't tolerate levothyroxine.
I understand this but when I started to go up I felt like I was dying. The nausea was totally debilitating to a point I couldn't do anything for two weeks but sit on the bathroom floor. I could hardly eat or drink and lost a stone in weight. This isn't living. Yet when I come off the meds the nausea and dizziness stop as does the brain fog.
I have tried to go up but every time I did my life was horrendous and I really can't do it again. I believe I have a severe intolerance to the medication.
I'm so sorry, that does sound really rough!😥
With symptoms like that, I'd be tempted to stop myself (I mean I've done it... numerous times... and always have to end up going back on the meds because I become dangerously ill) unfortunately with a TSH that high, it suggests your body has spent a long time trying to compensate for your failing thyroid and is now slowly losing the battle. If not now, then at some point in the future, you are going to have to take thyroid medication. It sucks. Hopefully you'll make more progress with the liquid formula, when is the endo appointment?
At the moment my doctor is in correspondence with them so no actual appointment yet. It really is appalling how endo really don't care about situations like this.
Hopefully it'll get sorted soon. I'm ringing docs again tomorrow to try and rush it through.
It's ridiculous! But believe it or not you're lucky to get a referral at all. I have never been referred to endocrinology despite several requests to different GPs. Once the TSH is 'in magic range' the referral often gets sent back to the GP so they don't even bother to do it.
It's outrageous. But I always say hashimotos or autoimmune thyroiditis is the bastard (health service wise) of the autoimmune diseases. There tend to be clinics with consultants to deal with the others. There isn't even an overall acknowledgement of the role of thyroid disease in gut lining changes or gut dysbiosis, or the necessity of certain vitamins for hormone conversion or the fact that other hormones like cortisol, female hormones are also often low or deranged in someone who is hypothyroid.
That's where we are in 2023. Backwards.
Same here too much brain fogs nausea feeling ill long list symptoms for years.. definitely this isn't living !!! Suffering this for 7 years..😔
Your previous post only 26 days ago, you were only just about to increase dose levothyroxine to 50mcg (which is only the standard starter dose)
It’s common to initially feed worse and it takes 6-8 weeks for each dose increase to have full effect.
Unless extremely petite likely to need to eventually be on at least 100mcg levothyroxine per day
These symptoms you are experiencing are likely due to being on inadequate dose levothyroxine
Nausea and fatigue are extremely common hypothyroid issues
I totally understand this but my life literally stopped due to nausea so severe I could hardly stand up or eat or drink, it becomes literally unbearable. When I come off medication all that goes away. When I'm on the medication I also get very anxious, jittery and teary, almost like I'm over medicating.
It's awful and I really don't know what to do. I just know that I can't live my life on the medication.
It’s not a medication, it’s replacement hormones
Anxiety and too much adrenaline (jittery) are also more likely due to inadequate dose
You may need to initially take propranolol (beta blocker) as well (but not at same time as levothyroxine) …..this can reduce anxiety and enable you to tolerate levothyroxine
As you’re extremely lactose intolerant you need lactose free levothyroxine
Request GP specify Aristo 100mcg tablets - also listed as Vencamil
Aristo (currently 100mcg only) is lactose free and mannitol free.
March 2023 - Aristo now called Vencamil
healthunlocked.com/thyroidu...
Cut 100mcg in half to get 50mcg
Or cut into 1/4’s to take 25mcg waking and 25mcg at bedtime
Government guidelines for GP in support of patients if you find it difficult/impossible to change brands
gov.uk/drug-safety-update/l...
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
academic.oup.com/jcem/artic...
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Liquid levothyroxine very expensive and therefore difficult to get prescribed.
Liquid levothyroxine is also extremely difficult to get hold of at moment
Thank you I will ask my doctor about this.
I would agree with Alanna012
You most likely need higher dose levothyroxine….. as well as it being lactose free
Are you always taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after
No other medication or vitamins within 2 hours
Try splitting lactose free levothyroxine as 2 x 25mcg initially …
Modern guidelines suggest starting levothyroxine at higher dose
NICE guidelines on full replacement dose
nice.org.uk/guidance/ng145/...
1.3.6
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Also here
cks.nice.org.uk/topics/hypo...
pathlabs.rlbuht.nhs.uk/tft_...
Guiding Treatment with Thyroxine:
In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months.
The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).
The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range.
……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.
The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.
Have you had a full thyroid test TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO an Tg
You have only recently increased dose to 50mcg from 25mcg....starter doses.
I'd suggest you are very undermedicated ....nausea is a symptom... and that your FT3 level is abysmally low....T3 being the active thyroid hormone.
I'm afraid raising the dose can be challenging as the body adjusts to new hormone levels
Been there! It takes time and patience.
I'd suggest you need to stick out the miseries during increases until the body is receiving the hormone level (T3) that it requires for good health.
Sorry but your medics sound clueless...not unusual!
If you are hypo you must take replacement hormone for life
I’ve been so dizzy I was vomiting and unable to move, eat or even sip water so I have sympathy for how you feel .I hasten to add my reaction wasn’t to Levo or any other meds but to dizziness reducing exercises that just made me so much worse I was unable to do them, so my consultant at ENT wrote me off. In my case I just live with my condition as I can avoid triggers that make me dizzy.
But you have to get your thyroid replacement sorted or you will get so much worse!
My thoughts when I felt so ill were - if you want me to follow this treatment I’m going to have to be hospitalised so that I don’t become severely dehydrated. I didn’t suggest that, but those were my thoughts. I have no idea if this is an option for you.
If you can ride out a few weeks on a higher dose as the experts here are advising that looks like the way to go. But you’ll have to able to drink water.
I am so sorry you are going through this. I have gone through the same thing and it is horrible when you just want to feel better. It is probably more your body trying to figure things out than the hormone itself. I know that doesn't necessarily make sense, but your whole system has been turned upside down and it takes a while to figure it out. I am at 3 1/2 weeks on 75mcg T4 and 5mcg of T3. I think most people have said that around week 5 things start to settle down. Then we retest and may have to start the whole process over until we are where we need to be. You might be optimal at 50mcg for now are need 125mcg or more. We just don't know that without going through this awful process, but from my understanding the increases are generally less severe the higher you go.
The nausea was something I did not expect. I still have it some, but it doesn't seem as bad today. I just keep telling myself that it is my body trying to heal and it isn't necessarily going to feel good in the process. I took ginger tablets and drank ginger tea and that helped somewhat.
I don't know if you have had children, but when I was pregnant I was SO sick at first. It is from the hormone changes and I think that since thyroid is a hormone, we are going to go through the same kind of bodily changes. But for most women who are pregnant, the sick feeling gets better and better over time.
I really recommend you stay with it, be consistent with your dose and when you take it, have your labs done every 6 weeks and hopefully you will start to feel better. It won't be overnight, but in a few weeks/months you can look back and realize you are doing much better. That is the pep talk I have to give myself everyday right now. You will get through it!!!
I have exact same problems for 7 years now on Thyroxine 😔 really unwell.. getting worst .. upper and lower meds all time ..
Start trying on.. other journeys 🙏
Good lucks to us to find the right ways 🙏
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