Having terrible problems. Diagnosed hypo in August with hypo and hashimotos. Not been able to tolerate any levo meds. Accord 50mcg caused terrible dizziness after about 8 days. Dizziness went when I stopped. Wockhardte 25mcg also caused terrible dizziness and painful constipation within a few days. All reverted to normal within a few days of stopping. Waited a week and then tried Eltroxin 50mcg, caused severe painful constipation within about 3 days. So stopped and reverted back to normal after about 5 days. Already on laxatives for another med and even increasing the dose of these did not help the levo constipation. Eltroxin not cause dizziness by the time the painful constipation started, but I suspect it would have if I'd carried on. Teva liquid levo 50mcg - has the lowest amount of additives and is lactose free - after 10 days caused horrible dizziness, fatigue, headache which got progressively worse with each dose. Stopped by day 15 as couldn't stand it any longer. Dizziness etc resolves a few days after stopping levo. So does appear to be a direct reaction to levo. Ferritin, B12, and Vit D all above range. But folate is very low (treatment for that to start when I see GP next week) Given I can't tolerate any kind of Levo tablets or liquid, what other options are there? I'm getting very worried
Can't tolerate Levothyroxine: Having terrible... - Thyroid UK
Can't tolerate Levothyroxine
Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
Firstly they are starting you off at a good dose of 50mcgs but, in that you are sensitive to Levo it might be better to do alternate day dosing of 25mcgs to begin with and see how you go with that.
Also, we need OPTIMAL levels of the key vitamins to be able to use our thyroid hormone properly so exactly what were your results for B12 & D3?
You may well find that once you get your vitamin levels up you can tolerate the Levo much better but I'd still recommend starting at a lower dose.
B12 is 259, that's a bit low for my liking despite being in range so will start supplements. Vit D is 92. So well above the recommended 75 optimum UK levels (regularly monitored as asthmatic). I still supplement vit D daily. The trouble is, given the reactions above, which variant of levo would I start the alternate day dosing using?
Symptoms are more likely due to being more hypothyroid on starter dose levothyroxine
It’s extremely common to initially feel worse starting on levothyroxine
What were your thyroid results BEFORE taking any levothyroxine
B12 is definitively too low
what was folate result?
Starting on levothyroxine will exacerbate low B12 symptoms, so improving low B12 (and folate) essential
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
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
B12 drops
natureprovides.com/products...
Or
B12 sublingual lozenges
uk.iherb.com/pr/jarrow-form...
cytoplan.co.uk/shop-by-prod...
B12 range in U.K. is too wide
Interesting that in this research B12 below 400 is considered inadequate
healthunlocked.com/thyroidu...
Low folate
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid)
This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
healthline.com/nutrition/fo...
Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.
thyroidpharmacist.com/artic...
B vitamins best taken after breakfast
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 to find at reasonable price, should be around £20-£25. iherb.com often have in stock. Or try ebay
Other options
healthunlocked.com/thyroidu....
Igennus B complex popular option too. Nice small tablets. Most people only find they need one per day. But a few people find it’s not high enough dose
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
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
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) and continue separate B12
Post discussing how biotin can affect test results
healthunlocked.com/thyroidu...
Does hypo cause raised cholesterol? Mine has always been fine (around 4) it is now too high at 5.7. Will this self resolve once correct levo dose is reached?
Yes and yes
nhs.uk/conditions/statins/c...
If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.
It looks like you lasted longest on the liquid. It might be an idea to begin the folic acid from your GP for a few weeks before trying again. You could also do a very small dose each day if you have the liquid and very slowly depending how you feel increase until you get to 50mcgs. You will need to do a blood test once you have been on a stable dose for 6-8 weeks.
If you have been hypo for a long time then the lower doses of Levo can make things worse for some people. It may just be that as the low dose doesn't top up what your own thyroid was putting out, it replaces it. At low doses that means you're not getting as much as your own thyroid was giving you.
How was your ferritin?
Your B12 is far too low. You haven't given the range (important as they differ from different labs) but it can't be far from the bottom of range.
Are you vegan or vegetarian? If not:
B12 - do you have symptoms of B12 deficiency? The reference range for B12 is very wide and cut off point too low. theb12society.com/signs-and...
If you do then you should discuss this with your doctor for further tests for Pernicious Anaemia.
If not, then start with a methyl B12 sublingual spray or lozenge for a week, then add a good B complex. Once you run out of the separate B12 just continue with the B complex.
cytoplan.co.uk/vitamin-b12-...
amazon.co.uk/Better-You-Boo...
This B complex has all the right vitamins at a not unreasonable cost for 90 days supply(also contains folate). Once B12 is good you can stop the stand alone B12 and just continue with the B complex.
amazon.co.uk/Liposomal-Soft...
I am vegetarian. Pre-treatment in July TSH 6.7 (0.27-4.2) FT4 10.7 (12.0-22.0). After sporadic treatment as detailed in OP, yesterday's blood results are TSH 4.7 and FT4 15.5. so even though my taking of Levo has been on and off, it appears to have done something so far.
B12 is 242 (197.0-771.0) I have ordered a sublingual spray of B12, fatigue is the only symptom I have out of the ones listed on the weblink you supplied. GP is to prescribe folate. I was subclinical hypo in 2015 and it righted itself in 2016, and 2017. Tested again in August 2023 due to high resting heart rate (ECG normal) and hypo showed up (high BPM ascribed to another long term med). TPO also tested in 2015 and is hashi positive,. Ferritin is 77 (13.0-150.0). I have yearly iron infusions due to heavy periods and become symptomatic once my ferritin hits 30. Cannot take oral iron, hence infusions. This has been going on for about 6 years. Recently had mirena coil to try and stop blood loss
As vegetarian you should be taking B12 (and vitamin B complex) daily ever since starting on vegetarian diet
academic.oup.com/nutritionr...
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
Low B12 symptoms
b12deficiency.info/signs-an...
methyl-life.com/blogs/defic...
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a separate B12 supplement and a week later add a separate vitamin B Complex
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
Highly effective B12 drops
Vegetarians are frequently anaemic
Being anaemic tends to result in heavy periods
Low Iron implicated in hypothyroidism
healthunlocked.com/thyroidu...
Been vegetarian for 23 years. Only anaemic yearly for last 6 years due to heavy periods caused by the copper coil (now removed). Haematology did a STACK of bizarre blood tests before arriving at the conclusion that it was the coil/heavy periods causing it. It is ferritin anaemia not RBC anaemia. Will I be able to take the vit B complex that has folate in it as well as the GP prescribed folate? or will that be too much? As I know the body will only absorb a certain amount of any supplement
Don’t start folic acid until at least week after starting B12
Then once you finish prescription folic acid, start vitamin B complex
Note that improving folate when B12 is very low is not a good idea. Taking folate before B12 is good enough can lead to neurological problems.
en.wikipedia.org/wiki/Subac...
It is vital if you intend to supplement both B12 and folate that B12 is started a week before the folate.
Noted. I shall start the B12 when it comes tomorrow and ensure I don't start the folate for another 7 days. I am assuming folate will be prescribed next Monday, so I will hold off starting it until B12 is 7 days in
I had a look at your wiki link. I don't have neuropathy symptoms, and the wiki link itself says that it is no longer thought that b12 has to be started before folate. Do you have any other sources about this? I couldn't find any. I started the B12 today anyway. Won't even see GP until Monday
Just be aware that being vegetarian does not mean that you do not have a b12 absorption issue in tandem.
You could be low in b12 due to simply being a vegetarian (diet) or you could have an absorption issue as well.
Absorption issues could be due to a myriad of reasons - Pernicious Anemia, celiac, h pylori, use of certain medications, a tapeworm, age etc.
Some.helpful links - concise with medical footnotes -
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
stichtingb12tekort.nl/engli...
All the best to you.
Been previously tested for coeliac and H Pylori. My suspicion is it is a combo of being vegetarian and taking PPI meds
Those meds will do it.Hope you get everything worked out soon.
Which spray have you ordered? It needs to be minimum 1,000iu and preferably the methyl type which is active B12. You will need that ongoing forever.
The one from amazon, 1200mcg daily from Better You
Got this vit B complex as the whole lot are methylated and the b6 is p5p, which is better absorbed apparently
amazon.co.uk/dp/B01787EPEE?...
Start the B complex after you have finished the course of folic acid from the GP. That will help both your B12 & continue to top up your folate levels.
Your b12 levels need addressing and v importantly do not take folate or even a multi b before your b12 issues are resolved. This is because elevating folate can exacerbate neurological symptoms (for example dizziness) of b12 deficiency and in worst case make permanent damage more likely.
Frankly your GP should know this, but, weep, he may not. Worst he may deny it to cover his embarrassment: but, the b12 first folate second, is absolutely main stream medical science.
Best wishes
So that you have what I hope is a complete list of thyroid hormone medicines available in the UK, here's my medicines documents.
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.
The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.
helvella.blogspot.com/p/hel...
I already found this and have printed off the available levo choices. Thankyou
I have been there with this, not being able to tolerate meds.
I now source NDT armour privately and something called tirosint which is a levothyroxine with minimal fillers. Costs me a lot of money but I can’t tolerate the nhs levo. Plus I need a t3 drug otherwise I feel like I may die of fatigue.
My advice to be honest is to try and persevere with something. It takes months to adjust but eventually your body does stop reacting as it gets used to it.
Hi Ava can you IM me where you get the tirosint and NDT I have been trying to request it through the NHS but can't and I have had a look but unsure where to source it myself as I to need meds with minimal fillers as I am really sensitive?
It would be impossible to get Tirosint from a genuine source without a prescription. Any site that claims they sell it will be fake. Roseway Pharmacy might posssibly have it and offer a prescribing service.
As your reply might encourage scammers to private message you I will post the usual warning message about buying medicines without a prescription.
When you receive a message with a recommendation, please do not assume it is genuine.
Scammers are joining the forum on a very regular basis and messaging members with their assertions that they have successfully purchased xyz medication from zyx source.
First, check the profile of the member that sent you the message. Are they a long term member with an active forum posting history? Or are they a recently joined member with little or no posting history?
Once you have what you think may be a genuine recommendation, please message a forum admin to ask whether the admin team have any feedback on the source you've been given.
Admins are not allowed to recommend sources, but we can tell you what, if any, feedback we've received about the source you've been given.
⚠️ Don't part with your much needed money until you are as sure as you can be that the source is genuine.
Scammers often join the forum and post a 'fake' story about their thyroid journey, that includes mention of self sourcing their thyroid meds. This is to encourage members to ask them where they purchase their medication without prescription.
Read the full post: healthunlocked.com/thyroidu...
THe Teva liquid is pretty much the same as Tirosint as it has no ingredients apart from levo itself, glycerol and a preservative
I am on Teva 50mcg tablets as I can’t tolerate various other makes I’ve tried. You said that you couldn’t tolerate Teva liquid, well why not ask your GP to try the tablets? It is all about the fillers and they are probably different for the Teva liquid and tablets. Good luck.
Hi Fluffywardrobe, I note that you have asthma and use inhalers, has your doctor tested your adrenal function? Starting levo can cause issues such as "dizziness, fatigue, headache" if your adrenal function is poor (whether due to steroid inhalers or autoimmune adrenal issues), it can also go on to cause abdominal pain and vomiting etc. Your adrenal function might be fine but just flagging it up as a potential consideration.
I don't have any of these symptoms when not on Levo. It is taking the med that causes it, no issue otherwise
Hello Fluffywardrobe,
I am reasonably new to this also and my journey is far from complete, but after taking levothyroxine for 18 months and gradually feeling worse and worse, and then waiting for a referral to an endocrinologist after telling my gp that I was going to stop taking it, and then after seeing one who was totally useless and didn't listen, and blamed all my millions of symptoms on Vitamin D, I requested a second opinion from a different endocrinologist. This was NHS. My gp had said levothyroxine was the only treatment and I had to take it!!!!!
However, lots happened in the meantime, but when I was able to get an appointment, in February, my new endocrinologist put me on T3 only. I had stopped the levo already, a few months before.
Although she started me on a really low dose to begin with, very gradually I have started to improve. I have had one increase in dose in June and have just had a blood test and have my next appointment in two weeks time. I am hoping for another increase, but we will see.
I am not saying that this will work for you, but I am just letting you know that I understand how levothyroxine only can make some people feel worse.
This forum has a lot of very knowledgeable people, who know a great deal more than GPS and some endocrinologists. I read a great deal on here, because I was floundering, because my gp couldn't understand why I was feeling so rough on the standard levothyroxine. He seemed to suggest it was all in my head!
I needed help, which I received on here.
Knowledge is key.
Good luck. I hope you get better soon.
Good to hear of your success! Can I ask you what your symptoms were on Levo?
Hello celticlady
How long have you got?
Severe fatigue, worsening anxiety and depression, palpitations, giddiness, dupuytrens contracture, hair loss, Difficulty breathing. Very dry skin, muscular weakness,
Brain fog, and forgetfulness, sweating, digestive problems, and pain in liver area, loss of sense of taste, and loss of appetite, feeling full all the time, bleeding gums, receding gums, brittle nails, visual spasms, increased cholesterol, pre-diabetes.
There are probably more. These are most of what I can think of offhand.
Basically, I couldn't function. I became housebound.
Wow that's awful.... good that you persevered and got sorted.
I got all same even worst for very long time now..housebound same and hasn't been sorted yet😞
Buy some good folate immediately (the one your doc will prescribe won’t be better than one you can buy). Getting your folate higher will probably help your symptoms enormously - then try the Levo again. Failing that, consider liothyronine.
People with adrenal fatigue can't tolerate any thyroid pills. Most problems with thyroid comes from adrenals. If you fix adrenals-you don't need levothyroxine.
Fixing an adrenal problem won't fix the thyroid gland or get rid of hashimotos, so levo will always be needed
I had some awful side effects the first week or so but going into day 13 now and they seem to tail off can you try pushing thru for a few more days with one type? It’s all very hard isn’t it
Trouble is, the longer I took the levo, the worse the side effects got day by day. I'm going to get my B12 sorted and then start on folate a week later, then try to reintroduce the liquid every other day at 25mg and go from there. If that doesn't work, I will ask to see an endo
You might want to start lower, if you can't tolerate the 25 mcg 🙂
I had a very similar experience with Levo. I take ERFA Thyroid and tolerate it well. It is sadly only available to me on private prescription. To me though, only option.
I can relate because I was on and off levothyroxine at first. I was taking tablets and the 25 mcg was too much, my heart was racing and I just didn't feel well. My doctor switched to SERB thyroxine liquid form (not capsule) in a bottle -- the delivery is by drops of 5mcg and you put the drops in water. I started with 5mcg for 10 days, then 10mcg/2 drops and was tested again in a month. This helped me to ease into my present dosage of 55 mcg.
And I wholeheartedly agree with the B12 advice given here. Good luck!
Hi Fluffywardrobe❤️
I'm the same can't stomach both levothyroxin or liothyronine I'm like you I don't know what to do now🤦♀️
And I've given both a good go, I'm lactose intolerant and have colitis mine is not constipation, mines server diarrhoea with cramping and inflammation (irritating my colitis) I've been on all the T4 lactose free meds and the lactose free T3 meds, I've been on Roma nearly a year now.
I also did what you did and took myself off them to see if my bowles would go back to normal.... They always did... No more diarrhea, cramping and inflammation.
Go back on and it comes back, I've to stop taking the t3 for a couple of days when the I can't cope with the pain of inflammation 😔 but as I've tried explaining to the gps receptionists I can't keep doing that as I have no thyroid, but so far no gp as bothered.
I did see an endocrinologist in Liverpool recently about my diagnosis of primary hyperparathyroidism, she thinks I'm pooling the t3 in my blood stream 🤷♀️ I can't get an appointment for love or money 😠 I asked at reception "would you not class my case as an emergency? as I'm having to choose between taking my T3 and having serve diarrhea"... "NO its not classed as an emergency" ring between 8am 9am for appointments 😠 like you I'm now so bothered what I'm going to do🤦♀️
Have you tried liquid levo? The only thing I can think of to get my B12 and folate treated and then try to reintroduce liquid levo at a very low dose every other day and increase every couple of weeks to see if I can tolerate it that way. If not, then I will have to ask to see an Endo
Yep... In fact liquid levo was by far the worst, I actually vomited on it I fels so sick, my stomach was on fire and I gave it a go, manage one month then I just couldn't see any use in taking it as I was bringing it back more than it was getting into my system 🤷♀️
Wow. That's an untenable reaction
I couldn’t tolarete nhs levo too I did DIO2 gene test and it showed one of my parent genes are faulty and I need t3 . I also developed skin rush from nhs levo (tried all brands ) and it made me like I was dying 
it took me a while to figure out about NDT and I sourced mine from USA still sourcing it which costs me more than £200 .ndt iam doing much much better. I tried also t3 only but slightest dose made me feel dizzy and spaced out . So again nhs t3 didn’t work. Yes adrenals needs to be checked . I have done recently Duch test and awaiting results for all the hormones . Hopefully will soon find some answers . I been hypo and hashi since 2017 but probably had hashi a while ago before I came hypo as I had hashi symptoms before that - dry skin falling hairs constipation etc . I wish u to find your treatment which will suit your needs it’s not a marathon it’s a journey . May God bless you
Sadly paying for NDT is not within my means, but thankyou for your reply
I had the same problem initially. 😕 I just kept at it, the dizziness and constipation only lasted about a week then went away. Just in case you want to try to fight through. I was on the 50mcg with the lowest additives. I'm still on it, at 75 mcg now. Good luck!
I am finding that the longer I stick with it, the worse the side effects get. I tried to push through it, but it became absolutely intolerable. Going to try re-introducing at a very small dose every other day once the current side effects have gone away now that I've stopped. See if I can build it back up that way?
Yeah, I've heard on here that you can start a tiny dose and increase as tolerated. Sometimes it takes years to get to full dose. But definitely doable. Same thing our body makes, but maybe your body has been without for so long that it is having a tantrum.... 😂😬 I wish you the best luck! 🤗💛
I wouldn't be surprised, as I am VERY drug sensitive anyway. Certainly worth a try
I am very sensitive as well. Thankfully the levo only gave me moderate problems. You can see my issues if you look at my last posts. It was pretty hellish. 😂😬
That is because thyroid medication is not the solution for people with Hashimoto's. Your hypothyroidism is a secondary consequence of your Hashimoto's ( I have the same).Medication won't work, won't fix anything, and on the contrary it will give you additional symptoms/ side effects.
Folate is low because with Hashimoto we have very low stomach acid which prevents folate from being absorbed from diet ( bet you have acid reflux or GERD too). Even if you take folic acid (which is not folate) you won't get your numbers up.
You need to find the root cause of your disease and address that. With Hashimoto's could be anything, but generally what finally tips the scales is a very stressful event.
I hope you find what was your cause and can address, but know that medication for thyroid will only make you sicker.
Best of health.
If someone's thyroid cannot produce enough thyroid hormone, whatever the cause, then that person requires to get thyroid hormone from elsewhere - that is, some form of thyroid hormone medication.
That is like saying if you keep walking over that hole you'll keep breaking your leg; so instead of fixing it, keep putting on a cast everytime you break your leg.Thyroid medication is needed if you don't have a thyroid. It is not intended for autoimmune thyroid disease. By the name of it, autoimmune means there is a trigger.
I am not telling anyone yo stop their medication, but when your meds make you sicker than you were before you took them, it's a bit counterintuitive to keep on taking them, right... you were better of before.
And I am speaking from experience, as I am dealing with the same disease myself, and as a scientist and specialist that reads the research and the studies coming out. And by the way, it is actually proven that taking levo in Hashimoto's makes your thyroid less active - so not only you're not treating the cause, you are causing more damage.
At the end of the day, we all have to decide what is best for our health.
Your first reply very much reads as "Do not take thyroid hormone medication if you have Hashimoto's."
Where do you get your thyroid hormone from?
DietRehab, ' it is actually proven that taking levo in Hashimoto's makes your thyroid less active'
Please point us at this proof. We can't simply take your word for it, even though you claim to be a 'a scientist and specialist that reads the research and the studies coming out'.
BTW, We have our very own scientist and researcher here on the forum diogenes aka Dr John Midgley. healthunlocked.com/user/dio...
He and the rest of his team are busy compiling a soon to be released book, so he may not be around right now to add his opinion to your claims. you can read a little about him and his colleague Dr. Johannes W. Dietrich here thyroiduk.org/about-thyroid...
I do have GERD due to a hiatus hernia. But I have taken folic acid in the past and it got my numbers right back up to optimum levels, so your suggestion that folic acid won't get my numbers up has already been proven as untrue in my case. It is low in the first place due to poor diet and being vegetarian, not hashi. 90% of people with hypothyroidism have hashimotos (remainder are things like thyroid cancer/thyroidectomy) and there is zero robust peer reviewed evidence to suggest levo causes more damage. Not taking it will eventually cause major organ damage and coma in the very long term. You are not the only one with a science degree (I have 2)
Blanket statements about treatment/or not in Hashimoto's aren't helpful. The term "Hashimoto's" can cover everything from a very slow growing thyroid disease, which can go on for decades without the patient needing T4, to a rapid "crash" owing to profound autoimmune defects quickly destroying the thyroid gland. Patients have to be considered individually and assessed accordingly, so that any generalised statement may not suit them.
If T4 helps them, then all well and good. It's also necessary to understand that as the thyroid dies, it directly produces T3 preferentially as well as a declining T4 level, in a desperate attempt to maintain active body T3 levels. If it can't do so, then T4 therapy will be required, as the body enzymes don't get enought T4 to make adeqaute T3.
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