I think I’m going mad! Long story short I had a baby, lost a lot of blood was anaemic for 10 weeks, developed an overactive thyroid. Within 6 weeks i had a dangerously under active thyroid. I started levothyroxine, 4-5 weeks later I started developing hives all over my body, swollen joints, trips to A&E with a swollen face mouth and tongue. I am convinced it’s an allergy to levothyroxine. Drs are telling me it can’t be, I’ve read loads online about reaction causing hives,swelling,flushing. Has anybody had anything similar?
I’m on 4 antihistamines a day and another tablet used to treat asthma and it’s still out of control - I’m one big itchy hive. Currently taken myself off of levothyroxine to see if it settles.
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Yasminlox
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I am convinced it’s an allergy to levothyroxine. Drs are telling me it can’t be, I’ve read loads online about reaction causing hives,swelling,flushing.
It's rarely an allergy to levothyroxine (the active ingredient), it's more likely to be a reaction to the fillers.
I am on the brand Almus(?) not tried any other brand, drs aren’t interested in the two being related/connected and have told me I can’t be allergic to kevothyroxine despite the allergy warning being hives,skin rash
Almus is made by Accord. Look on the box - I think on the long edges.
My medicines document has a table (around page 31) of UK levothyroxine products.
helvella - Thyroid Hormone Medicines
I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.
lost a lot of blood was anaemic for 10 weeks, developed an overactive thyroid. Within 6 weeks i had a dangerously under active thyroid. I started levothyroxine, 4-5 weeks later I started developing hives all over my body, swollen joints, trips to A&E with a swollen face mouth and tongue.
Autoimmune thyroid disease, also called Hashimoto’s, usually diagnosed by high thyroid antibodies…..often starts soon after giving birth.
Have you had thyroid antibodies tested
Early stage Hashimoto’s can start with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid
Carbimazole is not correct treatment for Hashimoto’s
Standard starter dose of levothyroxine is 50mcg. Which brand of levothyroxine did you start on
How much levothyroxine were you initially prescribed
I’ve had an antibodies test and have told thyroid unlikely to balance itself and I will need hormone tablets for it for life. My mum has under active thyroid and I was diagnosed with coeliac disease 13 years ago. Started meds on 5th May. After 4 weeks of being on levothyroxine bloods showed that my thyroid was in normal range. I was started on 100mcg levothyroxine almus (is that the brand?) 5 weeks after starting the hives arrived. 7 weeks after I started to feel really really fatigue and brain fog dr upped me to 125mcg 1 x levothyroxine 100mcg 1 x levothyroxine 25mcg.
I’ve had every bloodtest under the sun in the last 2 weeks and thyroid still in normal range.
No longer on iron tablets I come off of those before I started having any problems with my thyroid (that I am aware of) spoke to dr as I presumed my iron was low due to racing heart race and brain fog turned out to be overactive thyroid.
Strictly gluten free diet.
Thank you for the links interesting as every dr is taking no notice of me insisting the two are related.
Coeliac is autoimmune and frequently linked with autoimmune thyroid disease aka Hashimoto’s
Technically it’s Hashimoto’s if there’s a goitre or Ord’s thyroiditis if no goitre…..with Ord’s thyroid shrinks and shrivels up
So you started on a good dose at 100mcg ….possibly even a little high
Many people find it tough to adjust to sudden introduction of 100mcg levothyroxine. Standard starter dose of levothyroxine is 50mcg……but modern guidelines suggest starting at higher dose
On levothyroxine we MUST have GOOD vitamin levels
As coeliac you should have vitamin D, folate, ferritin and B12 testing at least annually
What were most recent results
What vitamin supplements are you currently taking
Which brand of levothyroxine was 100mcg tablet
Which brand of levothyroxine is 25mcg tablet
Many, many people find different brands are not interchangeable
Please add results from before starting on levothyroxine
Bloods should be retested 6-8 weeks after each any dose change or brand change in levothyroxine
Testing after 4 weeks, especially at 100mcg dose was far too soon
Have you ever suspected you might have lactose intolerance?
Before starting levo my levels for TSH were 61.74 and t4 were <5.2 the levo 100mcg is almus and 25mcg are mercury pharmacy I have just started some multivitamins since your reply.
I am requesting all my latest results from the dr to see exactly what I have been tested for as I haven’t a clue!
Thank you for your reply, this is all a complete minefield for me so I appreciate some insight!
Hi sorry to hear you are going through all this. I experienced all the symptoms you are having a week after a thyroidectomy. Mine was due to the lactose in the levothyroxine. Although it was on my records that I am lactose intolerant the hospital ignored this. Can you please explore this as a possibility or do you tale diary ?
Thank you it’s getting me down now! My baby is nearly 7 months and I haven’t been right since giving birth! I don’t think I have a lactose intolerance, I have no reason to think I do but I will certainly try cutting it out for a week and see if it helps. Frustratingly the dr aren’t doing an allergy test on me as they think it’s ‘unlikely’ to be an allergy
I struggled since I had my thyroid removed. I saw a private consultant that put me on t3 and I can tell you, it has given me my life back. Please explore all options. I can't imagine dealing with this with a baby to take care of. All the best . I hope you find something that works. I gave up on the NHS as my GP does not have a clue what to do
Rather than being an allergy to the medication, it's much more likely that your hives is the result of insufficient thyroid hormone. In other words, you may need an increased dose of levothyroxine.
If you stop taking the levo, your hives may disappear, but you will make yourself very hypothyroid.
There is a strong relationship between chronic hives and autoimmune thyroid disease too. Here's an interesting article about this endocrineweb.com/conditions...
Having insufficient thyroid hormone can mean your body doesn't have the resources to deal with the histamine that causes hives. You may find the hives is triggered or worsened by consuming certain foods such as shellfish, dried fruits for example.
ALWAYS get actual results and ranges on all your tests
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
Yasminiox 'Two recent blood tests in the last 2 weeks have shown thyroid levels are within a normal range'
As you will soon begin to learn if you continue to read posts on this forum, when it comes to thyroid hormone levels, 'within normal range' is absolutely not a good indicator of patient well being.
Each of us needs to optimise the type and exact dose of thyroid medication to suit us individually. If your doctor thinks your 'hives all over my body, swollen joints, trips to A&E with a swollen face mouth and tongue' are unrelated to your thyroid treatment, you are going to have to do what so many of us here have had to do, which is to educated ourselves and then educate our doctors.
Please obtain the full thyroid test results from your most recent tests and post them here. Members will then be able to offer their suggestions to help you solve your thyroid medication problems.
What you really must not do is to continue trying to carry on a normal life without taking any levothyroxine. If you do this, it's highly likely that you'll soon find yourself unable to function normally or to be able to look after your baby.
I believe you. My friend is allergic to Levo as well. It is making her quite ill. She has tried every type of Levo there is including liquid. The doctors have no idea what to try next.She was waiting for an appointment with an Endo the last I heard.
She had tried 3 different brands of liquid and the doc said could have no more. All same result as tablets. Was sent for allergy tests, hasn’t heard back about them yet because the bloke went on holiday but then he was ill.
Hi Yasminlox and also Ellie-Louise in case this helps your friend. When I started on levothyroxine, I had a similar terrible time!! I thought I was going mad. My symptoms were slightly different but totally unbearable. I had extremely painful migraines daily, massive boils 😯 emotions all over the place, periods went crazy. I was a mess. I stopped levo and my symptoms stopped. I went back on it and they came back. So it was clearly that. I was on really low dose so this was easier for me to do. I wouldn't recommend suddenly stopping the dose you're on. Believe in yourself as the doctors generally don't believe us! My doctors didn't.
I tried all the UK generic levothyroxine and had the same reactions. So then I tried metavive glandular instead (edited by admin). But I didn't get the same terrible reactions as to UK levothyroxine.
So then I branched out and bought a Brand name levothyroxine, not manufactured in the UK, not a generic, not with a prescription. Just to test if I could tolerate this. I bought it online from an online pharmacy a friend had been using for years. This was a Totally different experience to UK generics. I have no idea why, I can't find an ingredient I'm allergic to specifically. But something is different. I'm extremely sensitive to slight variations in drugs. I have the same problems between ibuprofen made by a supermarket cheaply and expensive brand name ibuprofen.
So my recommendation is to try different UK generics first, but if none of them help, try a brand name, even if you have to buy some abroad online just to test!! If it works, it works.
Hope you can find a solution. Don't give up and don't let the doctors get you down. Trust in yourself and what you're experiencing xx
I take a U.S. brand name levo and use only 50 strength because it has no dyes in it. My joint pain went away. So, for example, if you need a total of 125 levo, you can take two 50's and then split another 50 and take half to get to your 125 total.
Best wishes. So exhausting to try so many things, but listen to your body and be your own advocate. Everyone is different and docs don't have to live your life so definitely keep trying.
I wrote a post a few days ago about thyriod urticaria (hives) I have been taking levothyroxine for thirty years ,so I don't think it is the levothyroxine I have allergy to,having said that I sometimes wonder that with all the different brands I've used over the years ,for years I used a brand named eltoxine ,I always though since I was taken of that brand nothing else has been as good ,and so many different brands after ,I believe they still make eltroxine ,but they have changed ingredience, my dermatologist has diagnosed my hives as autoimmune thyriod related
Not really ,as I have preasure hives example anything that is snug to my skin brings me out in them made worse by heat ,I've stayed in my slack nightie for days ,when I say not really I mean they are ok while I'm not dressed ,if I was to get dressed they would bother me a great deal ,so if I'm not going out I just stay in my slack nighty ,the medication isn't working for me ,dont no where to turn next ,I am sorry you are suffering with them ,I wouldn't wish them on anyone
It’s so horrible. I’ve spent the last 3 days in a nighty with this heatwave, the only thing with that is I can constantly see all my hives and gets me so irritated! Are you on anything for them? I’m on 4 180mg fexafenodine and 1 other which I can’t think the name of beings with M and is used for people with bad asthma the next thing they said they would give me was ranitidine
Something else to consider—you’re coeliac, which often results in nutritional deficiencies, especially Vit B12 and folate.
If you used gas and air (entonox) during labour, the chances are your B12 levels are very depleted. Low B12 symptoms can mimic thyroid issues.
When you next get blood tests, ask for everything to be tested—iron, ferritin, Vit B12 and folate—as well as thyroid function tests.
The intolerance to levothyroxine (if it is an intolerance and that’s not yet clear) or the symptoms your describing might be at least partly related to nutritional deficits.
Agree it may be the brand. The only brand I can tolerate is Mercury Pharma Levothyroxine also their Eltroxin which is made in the same place, same ingredients just different name for some unknown reason! As mentioned not the levo but the fillers. I came out in a rash when using other brands. Hope you resolve your problem.
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