ok so this is my first post i need help so here goes i'm allergic to levo 75mg up i'm on 100mg oral solution but before this i was taking eltroxin levo and before that i was taking teva levo <<< this one is the worst for my hives i can't stand it so here the thing eltroxin gave me 10% less hive then teva same with the oral solution but my meds need to be 150mg i'm taking the max antihistamine 180mg and is some what helping but i still can't go for a walk with out the hives showing the face its some thing to do with sweat and water as it happends in the bath to my life is crap i can't walk or shop go to the beach with out these hives any way my GP yesterday gave me new pills to try i was cool with that i thought they would be new ones i've not tried BUT NO there TEVA LEVO!!!!! i just want to cry my option from my gp today is take the oral solution or eltroxin or stop taking any levo at all!!!!! my tsh is already 14 on what i'm taking now i imported some natual thyroid and will start take this tomorrow as another gp told me if i could get it do so please help with advice i'm so done sick of being tired and moody and suffering with depression pic is not the worst it can be but you get the idea and my breathing is affected when hives hit
allergic to levo help : ok so this is my first... - Thyroid UK
allergic to levo help
soxysarah
Welcome to the forum.
i imported some natual thyroid and will start take this tomorrow
I obviously don't know what brand you have bought but I would just like to point out that NDT (natural desiccated thyroid) isn't all natural. If you have bought the tablet form then it will contain fillers, tablets can't be made without them.
I hope you get on better with the NDT but at the end of the day it's not right that you should have to resort to buying your own medication when standard Levo causes you problems, your doctor should be able to source you an alternative.
Here is an article about the different fillers in Levo:
thyroiduk.org/medications-f...
I wonder if Tirosint gel capsules would be any good for you, they contain just Levothyroxine sodium, gelatin, glycerin, water. It's listed under "American Levothyroxine (not licensed in the UK)".
its called raw thyroid and has 50mcg of bovine thyroid the rest is fillers or at least that what i could find out how would i get a hold of tirosint?
soxysarah
Is this Natural Sources Raw Thyroid which contains
Thyroid Tissue 50 Mg
Adrenal Tissue 20 Mg
Pituitary Tissue 10 Mg
Thymus Tissue 5 Mg
Spleen Tissue 5 Mg
Kelp 300 Mg
I'm afraid this is not "natural thyroid" as in Natural Desiccated Thyroid (NDT such as Armour Thyroid, etc.)
Raw Thyroid is a glandular with no declared hormone content.
NDT has declared amounts of T4 and T3.
As you can see, it's not just thyroid tissue, there is adrenal, pituitary, thymus and spleen tissue. It also contains kelp which is iodine and we shouldn't take iodine unless tested and found to be deficient. Iodine solution used to be used to treat overactive thyroid before the current radioactive iodine treatment was introduced. It can cause hypothyroidism and can make hypothyroidism worse.
how would i get a hold of tirosint?
Ask your GP to prescribe it due to your problems with standard Levo, especially considering all the makes you have tried and the fact that you have such a reaction to them.
thanks so much for this info i didn't know about the kelp being iodine its going strate in the bin!!! no clue wht to do now other then ask for Tirosint
soxysarah
I think you have a strong case to argue that your GP finds a solution, presumably he is aware of exactly how serious the reactions to standard Levo have been.
Although Tirosint is listed as "not licensed in the UK" it is possible for it to be prescribed on the NHS but you may have to push for it, maybe even ask to be referred to an endo to prescribe it, I'm not sure about that.
before lock down the plan was to see an endo if the eltroxin didn't work but its all gone out the window i wish i could see my normal gp in stead of phone calls from randon gps about an email an endo sent grrrr
Tirosint gelcaps contains. Gelatin and is high. Histamine. Tirosint Sol has Glycerol and also high histamine and oxalate and both be are mast cell liberating. Above 75 MCG Synthroid/ Levothyroxine triggers histamine rashes with me..
That's really interesting I didn't know tirosint is high histamine and oxalate. I have histamine issues and estrogen issues so can't convert properly and have started having lots of reactions since I came of the contraception pill I can't tolerate levo or liothyronine only one brand they blacklisted so won't prescribe me so I am on NDT and metativive at moment but don't feel as stable as I want to feel still have symptoms. What medication do you currently take ?
Synthroid and T3 Liothyronine by Mylan. No other option. The US doesn't have an injection Levothyroxine like I was able to have whilst living in South Africa and Hong Kong
Wow that's interesting I didn't even know there was an injection
Just reading about the brand mylan as not sure can you get that in the UK and it says in the side affects -
They should immediately report during the course of therapy any signs or symptoms of thyroid hormone toxicity, e.g., chest pain, increased pulse rate, palpitations, excessive sweating, heat intolerance, nervousness, or any other unusual event.
I get the symptoms on NDT but when I was reading the leaflet it's also connected to adrenal issues so does it refer to being over medicated so potentially hyper or its it due to adrenal insufficiency ?
Presumably you have autoimmune thyroid disease also called hashimoto's diagnosed by high thyroid antibodies
Essential to regularly retest vitamin D folate ferritin and B12
Have these been tested
Link about hives and hashimoto's
thyroidpharmacist.com/artic...
yes i do all where normal on my last test but i will ask gp t test again as it was awhile ago
Tirosint?
I get exactly the same with every brand of Levothyroxine that I’ve tried. My TSH went up to 29.9 because I couldn’t take thyroxine and nobody would help. I saw a private endo who prescribed T3 and I’m fine on that. But trying to get it on the NHS is difficult even after 5 years.
Hi please can you pm the details of the endo you saw, what liothyronine brand are you able to get and do you have to pay for it or has the endo referred you bk to primary care and authorised them to prescribe it ?
I’m still fighting the CCG because they have refused to allow my GP to prescribe (Which I know they are not allowed to do but frankly I’m sick to death of having to justify myself) so I’m having to go back to the NHS endo who requested my GP prescribe. At the moment I have to get a private prescription from my GP and then source my T3 from abroad. I used the list from Dionne (I think that was the name) of Endo’s who are sympathetic to T3. I can’t remember his name but I saw him privately in Bristol in 2015.
Are you definite you’re allergic to levo or could you just be desperately under medicated? Sorry it’s probably a silly question. But it would be good to see your results over time and on what meds etc
The endo has agreed that I can not tolerate Levothyroxine- the itching is just unbearable and is from my head to my toes. My TSH only rose so high because I was unable to take levo due to the side effects. Whereas when I take T3, I’m fine.
Have you been tested for histamine intolerance too? Hashis caused that and lots of foods are high in histamine.. Everytime you eat you basically fill up a histamine cup and it the foods are high in histamine the histamine overflows into your systems causing reaction (hives and well as other allergic reactions for me feels like my throat is closing, tingling arms etc) . I have to now watch what I eat and try and avoid high histamine foods.. Vit D, b12, selenium and zinc are all key for hashis.. Gluten free diet made a huge difference to my inflammation and antibodies too. Good luck
no never been tested i am only going on what happends to me before taking levo and up to 50mcg all was fine till 75mcg and the hive started and now on 100 mcg its worst the more i take the worst it gets and it does not happen after food as i only eat once aday should i still get tested tho?
Have you adjusted your diet at all since diagnosis? If it's not impacting food allergies you may be ok. I'd defo recommend going gluten free for hashis anyway, have you read Izabella Wentz books on the Hashimotos protocol. It's really helpful in explaining how to help with symptoms
tbh no to both but i will now at least read the book i don't eat much gluten any way
I have exactly same issues but I have been tested for mast cell and histamine intolerance but the tests don't always show up accurately if your not having any reactions at that time. I managed to get anti histamines to try but I found that I could managed my reactions best by going bk on the contraception pill or injection as it was triggered by estrogen dominance. What medication are you able to tolerate ?
I have had what I thought was allergic response to levothyroxine, in fact my sensitivity to levothyroxine has plagued me ever since diagnosed hypothyroid. I found a way through it, eventually. But in the course of figuring out what was happening with levothyroxine I discovered some research implicating levothyroxine in a reduced anti-histamine response of the body, one piece of research described how mice injected with very high doses of histamine survived unless They were also given levothyroxine, then half of them died. The researchers suggested that oral absorption of levothyroxine could be interfering with the guts primary anti-histamine mechanisms so for a long while I took anti-histamines to ameliorate the pseudo allergic reaction to levothyroxine. I took the types of AH that work in the brain and the gut. When the reaction was initially so profound I also avoided foods that are known to have a high histamine load potential and for the first time in my life, after being on levothyroxine, I developed persistent hayfever! Anyway, although these effects are still noticeable sometimes they are now tolerable and it seems my body has adjusted and I seldom need the antihistamines. The other unusual thing I do to manage any adverse effects of levothyroxine is to split the dose into at least 3, currently in 3 spaced intervals between 11pm and 6am. This also has the potential benefit of reducing the potential negative feedback on t4 - t3 conversion from typical levothyroxine doses which are far from physiological normality (much much higher and absorbed as free t4 from the gut rather than steady 24 hour secretion from the thyroid gland into the total T4 pool in the bodily fluid).
what symptoms did you have?
Terrible headaches, itchy eyes, stuffy, brain fog, all the symptoms of typical hayfever even out of hay fever season, nausea dizziness, like a cross between food poisoning and hayfever.
i use to have migrains and dizziness but thats all gone now
Oh, gosh. This is exactly how I feel since taking Levo. I never had hayfever or migraines and now they are regular. Worse in the last 6 weeks since upping Levo to 75mg. It is exactly as you describe, a cross between food poisoning and hayfever. I have it today with the migraine. The first day is the worst but it takes another 2 days of feeling very delicate before it goes. It feels like I have been poisoned. And something that is bubbling under the surface all the time. Maybe I should stop the Levo and just take the T3 I bought.
yup that's how it affected me. Antihistamines help (particularly Cetirizine at night) as does minimising individual levothyroxine doses and using T3 to avoid having to push total levothyroxine doses too high (to get FT4 into upper quartile of the lab range or above range). It is well documented and acknowledged that getting TSH anywhere near normal on Levothyroxine only replacement pushes FT4 higher while leaving FT3 lower than euthyroid state. So if someone has particular sensitivity to levothyroxine, histamine related or otherwise, then it should be grounds for having T3 replaced in physiologically normal amounts too.
Yes, if Levo affects histamine levels, I guess the HRT I take also creates more histamine because of the oestrogen. So constantly bubbling with histamine that tips over the edge if I eat 1/2 an avocado. Both HRT and Levo taken only in the last two years - before that I was completely allergy free for 49 years.
Could also be histamine issues.
This is true with me getting headaches, brain fog, with thyroxine, but when I found that I also had parathyroid problems and have high calcium levels I reduced my calcium intake in food, I have been much better.
I also take my thyroxine at night and whether the headaches during the night.
(Thyroxine increases calcium levels in the blood. Also people with allergies have problems with cortisol levels which in turn increase calcium levels.)
What brand of AH are the ones that work in the brain and the gut?
I don't know as I make healing teas and follow a diet. Cyproheptadine is apparently the best but since I have Hashimoto and low cortisol am worried to use it. O,there AH can trigger Mast Cells.Dizzyness and overall weakness, muscle weakness and spasms are also symptoms
Tea recipes I are here. No need to buy the course if you.dont want to.
Its whether they are H1 or H2 type AH e.g. ranitidine for gut cetirizine for head. Im not a pharmacist so double check but that's what I settled on for a while and they helped me.
How do you know if they are H1 or H2 type AH ? I got prescribed
Sodium cromoglicate and fexofenadine hydrochloride but I unfortunately then picked up an acute helicobacter infection so had a lot issues with antibiotics so I haven't tried them yet as my stomachs really sensitive I was worried I would react but iam wanting to try them as I still get symptoms and really bad constant headaches.
What symptoms did they help with and when you says settled are you taking anything more effective now?
Basically you don’t know, but both those AH I mentioned were supported by my GP to see if they did any good so it was a bit trial and error. The cetirizine seemed to help me take levothyroxine during the night so the side effects had worn off during the day And even a child’s dose knocks me out and helps me sleep even if the levothyroxine wants to give me a migraine.....
I am exactly like you. Was diagnosed last August and I have tried every levo with terrible effects, my TSH is 32, my vitamins levels are fine etc.
Doctors have refused anything else since.
I had other health issues for 15 years before my thyroid packed in.
Not been well since. I’m house bound so cannot travel to see endo, but my doctors are useless and no options to change.
I don’t know what to do for the best 😢
That's terrible! You should create your own post and tell us your story so that more people will see it and comment. It's lost down here.
Have you tried NDT or glandular I had too and even tho not completely stable still figuring out and eliminating my other triggers i feel better than I did on levo or you can self source T3 you should beable to demand a referral to an endo and they should do a call with you if you can't leave the house they can't just leave you.
Hi. Can’t get them in the uk unfortunately, I’ll keep researching stuff 😢
What can't you get you order online and pay customs for NDT ?
The cost is one thing as I’m disabled and don’t have private funds, and finding a reliable one without high custom costs as the EU changed it’s rules with the uk now because of brexit.
So I’m going round in circles without success, so I leave it
Wp is the one I found to be suitable it has least fillers and not to expensive iam not sure about rules of customs but you just pay a charge before the post office releases your parcel it's worth trying if your feeling rough on t4 or metatvive or nutri Thyroid is quite good you can buy online delivered from UK
Hi Sarah
I had similar issues especially with Teva, liquid was better for me I was on Mercury Pharma but the chemist changed to Teva and it was downhill again. So I swapped to RLC labs: WP thyroid or Naturethroid from international pharmaceutical services, I haven't darkened the door step of an Endocrinologist in nearly five years and overall feel OK, not brilliant but I can function.
Best wishes hope you sort it out.
I am same which do you find most effective for you wp or nature thyroid I have tried both but I thought wp was slightly more effective ? Still have adrenal issues as get heart issues tho and sweats so still need to figure out exact dosage what dose have you found effective and what dose where you on levo?
I was diagnosed hypothyroid about 10 years ago and I had similar issues on levothyroxine, with my face puffing up really badly and a rash so itchy that I wanted to take my skin off and had to get up 3 times a night to shower in order to calm it down. Very red, painfully light-sensitive eyes as well. I was prescribed high doses of allergy medication, but with no effect. This calmed down to some extent after I eliminated various things that I was sensitive to. Alcohol, to start with. I found out later on that I was specifically sensitive to wines that contained high levels of sulphites (and dried fruit). Then gluten. I then switched to NDT, and this also reduced the puffiness, presumably because it contained less levothyroxine. After about 3 years on NDT, I found that I wasn't tolerating it so well anymore so I switched to T3 only. It's been 3 months now, and the last bit of puffiness around the eyebrows seems to be going away slowly.
This may seem a bit off the wall, but recently I stumbled upon a solution to my face going hot and bright red whenever I had a small glass of wine. Essential oils. I participated in a small experiment where I used a blend of lemon oil, lavender oil, and peppermint oil. One drop of this solution in my hands, rubbed together and inhaled the fragrance before drinking. Seems odd to me, but it works.
That's really interesting. I'm intrigued by the idea of essential oils countering this effect, and I'm wondering how they're impacting your histamine response.
I recently drank some sherry a couple of nights in a row, having avoided it (and port) for many years. My face quickly became hot and red, as you describe. This used to happen after any kind of alcohol until I sorted out my thyroid meds and nutritional deficiencies, so I was surprised to find the problem return. Perhaps there's more histamine in fortified wine?
Hi I am in similar situation I only seem to beable to tolerate NDT when I have the contraception pill or injection when I come off it I start to go really puffy and hormonal, where abouts did you get your T3 from as I was on liothyronine before they blacklisted it so I know how different it can change your life when you can't convert properly please can you pm? And which brand of NDT did take?
Sorry you’re having such problems. I don’t know where you live but I live in England. I have a friend whose daughter is similar to you and can’t take thyroxine. She’s on T3 only and so far is still getting it on the NHS. Her endocrinologist has said he’ll back her all the way so she can continue to get it free.
Best wishes
i live in london and i can't even get to see an endo atm just emails i guest
Yes this virus has made it very difficult to see consultants. Some are doing video or phone consultations though and yours does to be high priority I would think. I’m lucky in that at last I’ve found a good GP who phones me regularly to check how I am, though this is for different condition. I was put on a trial for3 months of T3 and should have seen the endocrinologist in April. However my GP has agreed to keep prescribing T3 until I’ve had another endocrinologist appointment.
Hi can you pm me the details of the endo and do you know what brand they are able to prescribe her and whether she gets it authorised through the hospital or primary care ?
Can’t work out how to send you a PM. However she sees same endocrinologist as I do and gets it on NHS. I don’t know what the hospital gave me as didn’t keep the bottle. My GP now prescribes it and it’s Morningside 20mcg which chemist cuts in half for me.
That's interesting so the endo authorised the GP to prescribed it where abouts do you live as I was able to get the brand of liothyronine from the chemist too up until they blacklisted it in my area in 2018 then they left me with no meds if you press on my name I think that goes to where you can pm me the details of the endo .. I am trying to find a new endo who's willing to prescribe through a gp so they sound like they are but it might be to do with the area but I can't imagine how it's not blacklisted everywhere in the uk now
Think it’s a postcode lottery thing as well in the uk. It’s ridiculous that the government and nhs don’t take thyroid seriously enough
I was unable to take levo. Tirosint was the only t4 I could take but started on a lower dose due to its potency
What do you mean your breathing is affected when the hives hit? Does your tongue swell up? If so this is very bad.
Have you every been allergy tested?
My breathing was effected too. My heart rate was constantly at 130,140 and couldn’t breathe. Doctors not interested so took myself off it
my heart rate is 57/75 at rest i have polpatations too
That’s my average before treatment, but soon as I take any levo, within 20 minutes my heart races to 120 and struggle to breathe. So stopped them. 🤷🏼♀️ Losing a fighting battle sometimes
I understand this I go through similar heart rate issues after my thyroid meds but my heart palps starts few hours after my meds (Im on Synthyroid and Cytomel) It was suggested here about folate so I started adding spinach to my smoothies and like magic my issues slowly disappeared and occasionally rear its ugly head.
Im thyroid-less!
It sounds like histamine intolerance it's which show as an allergic type reaction see symptoms in this link
my thoat feels tight and i start coughing as the hive begain to show i have an allergy asthma same thing happens if i drink strong orange juice
Thats really bad to have a tight throat and coughing once you start breaking out in hives... You could end up with anaphylactic shock and this is BAD.
You need allergy testing and if you decide to do allergy testing make sure they test you if they can for the ingredients inside levo and it could be hormone related (hives).
You should compare the ingredients in every thyroid meds you have been prescribed and see if they have same ingredients ..... Do you IMMEDIATELY have a tight throat after taking the levo ?
They don't test for levo I have tried asking it's just process of elimination ie record symptoms on it take yourself off it and monitor and then reintroduce
If it's histamine intolerance it won't show on any allergy testing as I have been to have allergy tests and it all came bk negative when I started with anaphylactic type reaction to paracetamol.
You could ask to be referred to a specialist in mast cell but then all they do is prescribe anti histamines the key is to reduce histamine foods and reduce stress triggers and any other environmental or food/ chemical etc triggers and try a different alternative medication
I really feel for you, after being given many brands of levolthyroxine, I found the one that causes no side affects. Yes. But now the chemist who dispenses the medication, informs me that the brand is unattainable!!!!
So, I put up with the side affects. I think we should continue to ask questions and really stress our difficulties. Best of luck.
Which Levothyroxine was that? Acacia, Dairy and many fillers in Thyroid meds are histamine liberating. I have yet to see doctors looking at the connection between the thyroid, histamine issues affecting patients and even brain health, balance issues and weakness in your legs, arms and hands. I had to research and discover for myself and teach my endo about it.
Hi Can you tell me more about your research and where did you find out about it. I 'd like to read these articles. Thanks so much. Have a great day
A histamine intolerance may signal a thyroid problem. Low thyroid levels can cause an increase in histamine production, whereas high thyroid levels can cause increased histamine receptors and a heightened histamine response.Apr 1, 2016
Living Well Dallas › histamine-and-...
Histamine and Your Thyroid | Living Well Dallas
An allergist, Haematologist or gastroenterologist could be of help. I kept a food diary and noted that the food I reacted to made my eyes puffy, itchy and red. The food all were on the high histamine list. My step son is a gastroenterologist so I could look through some medical books and materials. The Ray Peat forum has a lot of information about it.. Chris Kresser has a lot of information too. Private message me and that I Will be able to share more about it with you. Have food and medication list
I can only tolerate activis levothyroxine. Which is not always available!!
It's the chemist that know more about the different compilation of a tablet and are more knowledgeable in the availability and access. Nightmare.
Best of luck.
There is something called a low histamine diet. If you search for info you'll find loads on the web. It might be worth trying.
This isn't a subject I know anything about, so I can't add anything more.
Hi! You must be suffering badly with all that. If you have allergies the stuff you are taking is probably causing the allergies.
I will keep this short!
First, I would try to get a low dose cortisone e.g 5 mg prednisolone to control the worst of the symptoms. Yes, this has side effects, but also many others that we take, but in a low dose it is OK for a short time.
If taking the levothyroxine has been giving you headaches it may be that your calcium levels are too high. Ask your doctor to be tested for parathyroid hormone. This may be high and causing high levels of calcium in the blood. This can cause mood sings and depression
Have a vitamin D test, but only take this is low doses.
I have had problems with allergies, parathyroid, and thyroid over the years, but only it has recently been sorted and only because I have medical knowledge and also family who are medics.
Good luck
Hi I am allergic to fillers ,,did a lot of reasearch.. it is worse wen 100g plus apparently the rartio changes so i get all mine in 50 and 25 to make up to correct dosage as cannot take 100
Hi soxysarah
I'm sorry u feel so rotten ♥️
Like you I had a bad reaction to T4 I itched to the point of bleeding it also made my colitis worse but like many endos and GPS in this country and probably many other countries they play by guidelines, my gp made me stick with the T4 eventho it made me feel worse I tried several types after about 8 months or so we found out I was lactose intolerant it was the fillers that gave me the problem. Its disgraceful your gp would let you source your own levo.. My endo actually acused me of sourcing my own levo and said that's why I was so ill.. 😠 Cheek!!! I've never sourced any medication I fought both my endo and gp to sort me out I'm now on T3 only no lactose in them so you really should go back to your gp and tell them it's unacceptable to leave you in such a state having the thyroid condition is bad enough without having another condition on top
Good luck bug that endo or gp... ❤️
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