hi im 40 year old male with under active thyroid recently i went to my GP concerned about a rash or hives that seemed to be spreading everywhere all over my body my arm pits/groin/chest/back backside are worst hit it looks like i took a brillo pad to them and im getting a painful pin and needles head to toe periodically through out the day and my skin is just sensitive and painful
i have been told by GP that i have Urticaria and its quite severe so he gave me steroids and antihistamines (PREDNISOLONE-6 a day and FEXOFENADINE-1 a day)
they seem to work for like 3 to 4 hours a day but the urticaria rash/hives come back with avengeance every time and by 5pm you clearly see coming back i been on the steroids and antihistamines coming on 3 weeks now and im no better
I have been back to GP at least 7 times and every time i go back they give me more steroids and antihistamines and say its nothing to worry about making feel like im some kind of hypochondriac
i had a blood tests and they say everything is fine there is some raised levels but not actually clarifying anything so obviously its not fine
im starting to get extremely worried now and im losing my mind im literally on the brink of a break down and having daily panic attacks
the GP gave me diazepam/valium which i think just makes the urticaria worse he printed off a referral letter for me to ring up myself and book an appointment with allergy clinic but as soon as i did that they said they would get back to in novmeber the GP said to start stepping down with PREDNISOLONE 1 less each day but there really not doing anything anyway how long can i stay on these (PREDNISOLONE and FEXOFENADINE)
if anyone has had similar and found a solution then i would appreciate some help as it feels like im hitting a brick wall
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djob001
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I’m so sorry you are experiencing this. I had terrible hives after my TT (Graves with toxic goiter) and I really empathize with you. I was on antihistamines for awhile until they went away after my situation was better controlled after surgery. It is awful. Hives do occur in people who have hypothyroidism. If you click on my name I have posted an scientific article about this which may explain it for you.
Do you have your latest thyroid bloodwork? It would be helpful to post it here so some of our panel experts can comment and hopefully help you.
I am concerned that your docs have not shared your specific bloodwork results with you. You are legally entitled to a copy of your results.
I cannot say for sure, but I suspect if your hypo is treated your urticaria may also be treated as well. If you are not on the right amount of thyroxine, it will affect your urticaria. Do you have Hashimotos as well?
In the short term, you are being given something to help you. But I think there is a longer term solution and that is getting to what the state of your hypothyroidism is and getting properly treated.
I wish you all the best and hope you feel better soon.
djob001, Urticaria can be caused by being on the wrong dose of thyroid medication. So please tell us what thyroid medication you are taking, and what your most recent thyroid blood test results were.
The other important piece of information that might shed light on the problem is the brand of levothyroxine you're taking. Some people react badly to the excipients (inactive ingredients) in certain levothyroxine tablets.
thank you for reply "Urticaria can be caused by being on the wrong dose of thyroid medication" this is something i asked GP about today so he raised my dose awaiting further tests
Urticaria and autoimmune thyroid disease also called Hashimoto's is often linked
How much Levothyroxine are you currently taking and when were levels last tested?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range
All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Many people find Levothyroxine brands are not interchangeable.
Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet.
I agree with everythin th above posters say, also...
Are your other vitamins and minerals up to scratch? They need to be optimal to be able to convert levothyroxine (T4) to T3. B12, folic acid (but supplement with folate if needed), Ferritin (needs to be 70-90 for females), vitamin D (needs to be around 100), iron.
There's a DI02 gene mutation that means a person doesn't convert T4 to T3. If you can get your 'free T4' and 'free T3' tested (at the same blood test), you can do a calculation to see how well you are converting. fT4 ÷ fT3 should be between 4 and 4.5. = 4.0-4.5. [See update below.]
If the number is greater than 4.5 it means you're not converting T4 to T3 very well. The first step then is to get your vitamins and minerals optimum to get your conversion as good as you can.
If you're doing all the basics try checking your basal pulse to see if you're under-medicated. For me 60bpm is ok. Above 65 is over medicated, under 60 is under-medicated. Also there is a good monitoring sheet on the thyrogold site. It's worth reading the 3 free chapters of Dr John C Lowe's book that are provided as pdf files. These say how to self monitor when on thyroid hormone.
I was in the same position as you and got allergy tested (skin prick tests on nhs). Anyone who says they can test for intolerances is wasting your money. What you can do in the meantime (note only change one thing at a time so you know any improvements are due to the thing you changed).
Firstly, swap brand of levo. I found Wockhardt 25mcg tablets to have the least reaction for me. So my GP prescribed 7×25mcg tablets a day to give me my 175mcg dise. I suggest you ask for this as a starting point. Avoid brands with 'Acacia' in as that is a known allergen. My number one trigger was a brand of levo with Acacia in (mercury pharma).
Secondly, ask your GP to run a blood test to chest your RAST levels, particularly the one for egg, wheat, dairy. If you test positive for these, remove them from your diet. Try following an Auto Immune Paleo (AIP) diet if you need help with ideas and recipes.
Thirdly read up on how to implement an 'exclusion diet' and do it for one food at a time (after having already excluded the foods the RAST test shows you are reacting to.
Fourthly, note that all levothyroxine tablets contain corn. After doing all the things above I was still left with urticaria. By luck, I found out I was intolerant to corn. It's in everything. The local pharmacist's wife specialised in allergies and intolerances for children. After giving her a list of all the foods I was reacting to (after following an exclusion diet to identify them) she said what they'd all got in common was corn. It's in everything. If I follow a very restricted diet I now have no urticaria. You could do the exclusion diet the other way round and just eat a basic, wholesome diet for 2 weeks (for all your meals) and see if the urticaria improves, I suggest home roasted chicken (not ready roasted, they add preservatives, sugar etc), carrots, brocolli, kale, cabbage and spinach. All home cooked from the vegetables themself. To make things easy for yourself put the chicken, brocolli and carrots in a slow cooker overnight.
Oh yes, urticaria can also be caused by skin products, change your soap to pure vegetable soap and your shampoo to baby shampoo. Don't use deodorants (just wash night and morning).
I find E45 cream rubbed all over my body, night and morning helps calm my skin down (recommended by dermatologist and prescribed by my GP).
Please check out the links I have given to the OP. If fruit and ready cooked meat and toiletries are an issue I would not be surprised that you have a general histamine intolerance due to poor production of DAO enzyme rather than just specific allergies.. My daughter has a low histamine diet that's working pretty well in combination with Quercetin. Some baby shampoos do contain allergens, so you really have to check the labels..
Also, look into pollen food syndrome (fruit allergy).
Thank you. Yes I react to all histamine rich foods and those that cause histamine to be released from your cells. I have an article from the Daily Mail newspaper to thank for alerting me to histamine intolerance issues.
I never knew why I react to fruit, I just know I do, so I'm really interested to read the links to the article you gave. ☺
Cooking / stewing apples (plums etc) may render them benign so maybe worth trying that out..? Glad the link helped. Sounds as though HIT and Hashi's are a frequent pairing.
I've checked out the pollen fruit syndrome link. I don't think it applies to me as I'm allergic/intolerant to all fruits not just the pollen fruits listed. I'm pretty sure it's a histamine intolerance.
Just sent you a link on histamine intolerance due to lack of DAO enzyme. It sounds as though you could have this issue. It is not an 'allergy' but more due to a build up of histamine; and antihistamines are ineffective because they only deal with the symptoms and can contribute to even less DAO enzyme being made. Histamine blockers like Quercetin are good, but won't work immediately; they are a good preventative measure. A low histamine diet is probably your best bet for now. Drinks like nettle tea also block histamine. Here is a link that explores the connection between histamine and thyroid.
Also, maybe avoid any shower gels and liquid soaps and shampoos with Methylchloroisothiazolinone and Methylisothiazolinone - they are suspected of giving a poison ivy rash in some people.
thank you to all that have replied its very much appreciated and not something i was expecting i will try to answer as much as i can as there is a lot please forgive me if i have replied back in the wrong place
i was in GPs this morning and asked them for a printout of my last blood tests a few weeks ago but have to wait as they were very busy and have to go back to get them but i also had more blood tests done today and asked them to do a full thyroid profile and to include TPO and TGB antibodies and i am unsure if there testing FT3 and vitamins i will post both test results when i get them back
the brand of levothyroxine i get is from Loyds pharmacy is generic box with "northstar" and "actavis" on tablet sheet and my GP today just moved me up from 100mg to 150mg a day and he is keeping me on FEXOFENADINE for now
with some humming and arring by my GP he is now sending my to guys hospital which have a clinic that specialize in urticaria and he said would also refer me to a thyroid specialist and have to wait for the referrals to come through so fingers crossed with those
there is a lot of this advise people have replied i will be looking into in great detail and will keep you all updated
The dose raise from 100mcg to 150mcg is quite a jump. I strongly urge you to check that your pharmacy does not change your brand of thyroxine with the extra 50mcg tablets. It's important to stick with the same brand so that you eleiminate the possibility of getting a bad reaction to a different brand. In other words, ensure that you receive both 100s and 50s as Northstar/Actavis.
Fingers crossed you are well on the way to getting this sorted! Keep us updated on how things go.
Without knowing your most recent test details, it's difficult to say. Typically increases are done in 25mcg increments.
However, it doesn't really matter too much at this stage because you could try cutting the 50mcg tablets in half and only taking one half each day for the first week (plus the 100 tabs of course).
Then, as long as you're not feeling worse, try taking the full 150mcg from the second week onwards. Stick with the 150mcg dose as long as you're feeling ok, but drop back to 125mcg if you start to feel worse on 150mcg.
Hope that makes sense We can't always rely on the GP to know what we need, so have to experiment by ourselves to find out what works best for us as an individual. Keep focussed on your symptoms to see what improvements (or not) occur.
Whatever happens, the forum is always here for you to ask for help
Another thing... not all antihistamines work for all people! Fexofenadine did nothing to help my thyroid related histamine issues. If you haven't already done so, you could try some OTC (over the counter) antihistamines. One that is used a lot in hospitals for itching/allergies/urticaria etc is Chlorphenamine Maleate. You can buy this in 4mg tablets from a pharmacy. Make sure you ask for the generic version because branded versions are much more expensive. This one works for me when others don't.
My hives used to be much better relieved from the 60 mg tablets that I took 3 times a day than from the once-a-day 180 mg. tablets that replaced them. I just stumbled across this product review on Amazon:
"Split pills to smaller dose since 60mg so expensive
May 28, 2018
Verified Purchase
I usually buy the 60 mg dose of this same brand but since that dose was $55 and this 180mg dose around $27, I called my local pharmacy and asked if Allegra 180 was time released. The response was”no” and subsequent question whether I could split the pill (getting 90 mg not 60 mg) she said that was ok. I have heard from other sources that if pills are not scored (and these do not have a line down the middle) that you cannot be guaranteed the active ingredient is equally distributed. But pills are made by mixing huge batches in automated factories and then pressing/coating them (these have a very thin coating) so I don’t see how they could not be uniform in ingredients. I split one pill with a sharp knife and it split pretty easily and evenly. I took half each on Saturday and Sunday. They worked as well as my usual 60 mg dose without giving me the jittery feeling I got from taking a full brand name 180 mg Allegra some time ago. So with 100 pills I’ll be splitting I will be all set for this summer allergy season and next year as well. Now I am going to find a good pill splitter on Amazon."
So the 180 mg. tablets are NOT time-released. That explains a lot. Perhaps I metabolize the entire dose within the first 8 hours and then have nothing in my blood stream after that.
i had a blood tests and they say everything is fine there is some raised levels but not actually clarifying anything so obviously its not fine
asked them for a printout of my last blood tests a few weeks ago but have to wait as they were very busy and have to go back to get them
I suspect your blood test results should have prompted some action by the doctor. Now that you've asked for the results, the staff saying they are busy is just to give them time to decide what to do about the out of range results. In other words, they have to get their excuses planned. By law you shouldn't have to wait weeks for the results, the information should be available within about 24 hours normally, and all they have to do is push a button on their computer to print the information out. Don't accept verbal or handwritten results. I would go back in person to your surgery and ask again. If necessary, point out that you are legally entitled to copies of your own data. Take some proof of identity with you.
Once you have your results, if you create a new post you can type in the results and reference ranges and ask for feedback. You can also try taking pictures of your results, but only one photo is allowed per thread (in the first post in the thread) and you must make sure that no identifying information is included, since identity theft is a huge problem in this day and age.
You could also ask your surgery for access to your medical records and blood test results online. You will need proof of identity for this too. You will be given a piece of paper with the information you need to register online.
Thanks for the update! So glad you got additional meds - it’s all trial and error so you will have to see how you take to the dose. You’ve been given some good advice from RedApple and others about that. Keep us posted on how you are doing. By the way, you may do fine on the antihistamine you are given. Everybody responds differently , so you cannot go by others and how they feel. You will have to see how things work for you. All the best.
From experience, I can tell you that fexofenidine is excellent for hives (the non-medical term for "uticaria.") I found that the 60 mg 3 times a day worked much better for me than the 180 mg once a day pill they insist on selling these days.
Online access is best option for getting historic and future blood test results
UK GP practices are supposed to offer online access for medical record and 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.
In reality many GP surgeries do not have blood test results online yet
Increase in dose is usually in 25mcg steps. So you may want to cut 50mcg and increase to 125mcg for at least a week or so.
im going tomorrow and not leaving until they print off my 1st blood test from a few weeks back then again when i know new results are in i got the levo tabs in 25mg so will start with that see how i get on thanks
Great news that your GP is now doing all the things I would expect.
Just one thing, when I increase/decrease my dose I do so in 6.25mcg increments (by chopping a 25mcg tablet into quarters) and increasing every 2-3 days, this avoids the swings in symptoms from changing dose. After a week you will have increased by 25mcg. You can by a pill splitter from the chemist for a couple of pounds.
When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:
I'm sorry to hear that you're going through this too. Yes, my thyroid does seem to be to blame.
Since I wrote my original reply 3 years ago, I have found out the following.
I have low cortisol at all 4 points in the day. I found this out by doing a 24 cortisol saliva test - I went via thyroiduk and booked with Regenerus. My NHS blood tests for cortisol have always been OK but then they are looking for the extremes of Cushings or Addisons disease, not somewhere in between.
I have since found out this is likely to be due to my chronically low fT3 levels. (See Paul Robinson paulrobinsonthyroid.com or thyroid patients Canada.) thyroidpatients.ca
Since December 2020, I have been on T3-only medication prescribed on the NHS. My thyroid is atrophied and produces no thyroid hormones.
I have found my daily dose needs to be 75mcg, split into 5 doses, no dose more than 15mcg. I am experimenting with times/sizes of doses.
I take a CT3M (see Paul Robinson's blogs) dose about 3 hours before I wake up. Maybe I can take 20mcg for this dose.
I am still on my restrictive diet. My biggest problem if I deviate from it, even slightly with one mouthful, is inflammation and pain. My fingers swell up, and random other bits, usually my knees/ ankles. I have some Mometasone cream prescribed by a consultant dermatologist for when the urticaria starts, nowadays this is usually 1-2 individual spots, and providing I abstain from eating the food that cause it and put the cream on, go away within a 1-2 of days
However, what gives me hope is that I have a couple of friends that had food allergies and intolerances (that caused urticaria and inflammation) have got to the point of losing their food allergies and intolerances now they are on T3-only meds.
I feel best when my fT3 is between 5.2 and 5.4 in a range that goes from 2.4-6.0.
So, from your point of view, it might be worth investigating whether your cortisol levels are low, what your fT3 level is, and what your conversion rate is. This latter would indicate whether you need T3 adding to your thyroid meds.
I too was hoping I would be hives free by now and have a normal diet. However it is early days yet, even though it's taken me 15 months - I had to raise T3 very slowly, which I think is probably due to my low cortisol. My dose of thyroid hormone also varies between summer and winter, as I need more in winter. So really, I'm still establishing a baseline to see what dose/ timings works for me. I now know I need 10mcg more T3 in winter, but only 5mcg more if I take 75mg Thyro-Gold with my first T3 dose of the day, then go back to sleep for 3 hours.
So, prior to this morning's post, you were at a dead end, just being fobbed off with medications to control the symptoms. Now you have many avenues to follow that may stop the urticaria at it's source. Not a bad result in a day!
i didn't expect all this excellent advise from people with similar conditions even though i have not seen improvement in regards to urticaria yet i have a better feeling about it i will get back when i have tests results in thanks again
19th March 2022 - an update to my previous comment about conversion rate is below.
It is now more normal to express the conversion rate as fT3 ÷ fT4. A result less than 0.23 is classed as a 'poor converter', above 0.31 a 'good converter', and an 'intermediate converter' is anywhere in between. See Midgley et al 'Variation in the biochemical response to l-thyroxine therapy and relationship with peripheral thyroid hormone conversion efficiency' ncbi.nlm.nih.gov/labs/pmc/a... ]
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