In April last year, I started getting hives and was soon diagnosed with Chronic Urticaria. The doc took blood tests at the time and also discovered I had autoimmune thyroiditis and hypothyroidism. At that point, the only symptom I had was the hives. I was put on levo (25mg and subsequently increased to 75mg).
Since then, my levels have stabilised. I can't find the results but TSH and T4 were optimal rather than normal. But, since being diagnosed, I've become sicker and sicker. My current symptoms are:
Hives (every day, worse at night) neck. I think this might be vasculitis rather than hives but I can't get an appointment to properly diagnose.
A different kind of hives (more typical hives) that only come out at night (legs).
A different kind of rash, more red and itchy that is there all the time (back, legs, arms and stomach). This is the worst symptom.
Dry eyes with some discharge.
Generally dry skin (face).
Hairloss.
Fatigue (I'm in bed by 8pm at the latest).
Crepitus in my knees (both).
Pins and needles in my hands every morning.
The rash seems to be getting worse and worse and I am beyond exhausted now. I can't live like this. I can't get properly dressed because I'm so red and sore. I can't sleep because it's too painful to lie on my skin.
Things I have tried include
Getting tested for Vit D, Iron, ferritin etc. All results normal. I started taking VIt D anyway.
Getting tested for T3. Normal
Swapping my Levo (Teva) for Accord. I'm about 3 days into the new brand so probably too early to tell.
Cutting out gluten and dairy. No improvement.
Getting allergy-tested via a pinprick test. No reactions.
I have tried to push my GP for a referral as something clearly isn't right. But, yanno, Covid. So, I want to go private. But I'm not sure where to start. My doc also said at one stage that any referral would be to a dermatologist, but there is clearly something else going on. Immunology, endocrinology, or possibly even rheumatology?
I've been provided with the list of thyroid friendly endocrinologists, but there are none near me (Glasgow) and travelling by public transport is not an option right now (I don't drive).
One person, Lorraine Cleaver who lived in Glasgow (I'm not sure if she's changed her address) is the one who helped change the rules in Scotland along with some of the elected MPs and Dr Gordon Skinner..
I’d be surprised if any of your results are optimal. Results which fall into the “normal range” are frequently far from optimal.
Because 75mcg levothyroxine isn’t a lot. Many hypothyroid folk need at least 100mcg.
Do you have copies of any recent blood test results to share? While not medically trained, many here know exactly what to zoom in on—we might be able to spot some clues as to what the problem is.
The other thing that occurs is that the brand of levothyroxine you’re taking doesn’t agree with you. The brands differ a bit in terms of what excipients are packaged up with the synthetic hormone. It could be something in the tablet that’s making you itch—or it could just be that you’re chronically under-dosed.
Edited to add—I’ve just spotted you can’t find the results. Ask your surgery to let you have a copy of the latest results—it’s your legal right to have a copy. When you’ve got them, do please post them here for comment.
Alternatively, you might want to try some private blood testing—it’s sometimes the fastest way to get answers when you have uncooperative doctors. thyroiduk.org/help-and-supp...
Sorry, I did get the initial results checked and TSH an T4 were optimal. I also got a copy from the doc, I have just misplaced them. The other results, T3, Vit D etc, I've been told are normal but I still need to collect to look at them in more depth. I've just been too sick to do so. I think private blood testing is the next step as getting any more tests is proving difficult.
Sorry to hear you are feeling so unwell as others have said you probably need to increase your dose because it is not optimal yet. If this does not work for you there is always NDT to try next.
I had chronic itching and hives on 75mcg. I've since increased my Levo to 100mcg and it is now gone. I also lost a lot of hair on a lower dose. My T4 levels are over range but I'm not over medicated.
That's interesting. So even if showing optimal for T4 and TSH, I still might need more. My GP won't do that though, so how do you go about getting more?
The only optimal is what you feel optimal on. Even a 1 point drop in my T4 levels has dramatic results. For me, a 2 point drop is the difference between being normal and barely functional. My doctor cannot dispute that I'm a functional person with higher T4 levels yet he wanted to lower my Levo, which I had to fight. I finally had to go to a different doctor. If you still have some of those 25mcg pills you could split them in half to make 87.5mcg. I'm currently doing this myself. If it reduces your symptoms a little then you know it's an increase in Levo you need.
I think in the first instance arrange a full thyroid panel to include TSH, T3, T4 antibodies, inflammation, plus ferritin, folate, B12 and Vitamin D which is what forum members on this platform generally ask of all new people as a base from which members can see any obvious issues with thyroid health and from which you will be offered considered opinion.
If you go into Thyroid uk - who are the charity who support this forum you will find details of private companies who will undertake this blood test for you, and then you simply relay the results and ranges back on here, in a new post asking for opinion on same.
I don't think anyone who reads this forum believes any more in ' normal ' blood test results, and it is necessary for us to see results, numbers and ranges in order to try and help you find out what is going on with your health.
You are dealing with a lot of symptoms and we can try and help once we have the necessary the information.
P.S. I'm with Graves and post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism. I started out on this forum a few years ago now and I'm a bit like Humpty Dumpty and have stuck myself back together again by educating myself, reading posts on this forum and having the support of other forum members, and you can do the same, once we know where you are in your thyroid journey.
Hi. I have been tested for most of that. TSH and T4 are optimal (I checked). I've been told T3, ferritin, folate, B12 and Vitamin D are all normal, but I haven't yet seen these results to ensure they are optimal rather than normal. My Doc won't test for anything else (e.g. T4 antibodies or inflammation), or refer me as - on paper - everything is fine as far as he is aware. So, looks like a private test is my next step.
Well you are legally entitled to copies of all your tests results so in the first instance ask for copies of the blood test already taken and that you'll pick them up from reception in a few days time.
It's better to get copies as then you'll have the ranges and there will be no question of mishearing or a typing error :
When with these results and ranges - simply put everything up on here. in a new post for maximum coverage of forum members.
I'm just a layperson, not a medic, so what follows is not medical advice/opinion, just my experience:
I've had a year that sounds like yours, with one thing after another. I'll recount some of it below, in case anything sounds like it might be relevant and hopefully gives you any ideas. Feel free to ignore if you don't thing it's relevant to your situation.
As what follows is a bit long, the key takeaways are:
+ consider whether change of routine this last year could be a factor, particularly if you're spending more time in one place or visiting places that you didn't previously. WFH, or having a family member WFH, can make a big difference
+ if you started WFH and changed your showering/bathing routine, go back to your old routine
+ consider whether stress/anxiety could be a factor
+ switch to the most basic skin products (non-scented products, no sodium lauryl sulphate etc, use Neem Oil instead of soap) and switch to gentle clothes washing products
+ remember that pin-prick tests are not 100%, and they don't test for everything, so allergens could still be a factor
+ consider replacing bedding by non-allergenic versions (John Lewis are good for these)
+ consider reducing the temperature in your bedroom and/or sleeping with windows open. If you WFH, consider reducing the temperature and/or opening the windows of the room that you work in
+ if your GP is not hugely helpful or is hard to see, try online services (Livi is the one our GP practice gives us access to). I'd be tempted to ask for a diabetes test if you haven't had one recently. You might also want to ask about blood tests for viruses that could be messing with your immune system, even if just to rule out possible causes no matter how unlikely (I didn't ask for these, but the Livi GP ordered a load of them regardless)
+ consider anti-histamines, steroid creams etc. Your pharmacist may be able to offer advice on these
+ I've never found endocrinologist appointments remotely useful (other than to get a private prescription for NDT). Dermatologists sometimes, but mostly they tell me stuff I already know.
+ whilst things may be thyroid-related, not everything is
Here's the long (but still not complete) version:
For me, things that might normally be background problems that I just live with have been much worse this last year. To a large extent, this can be attributed to change of routine because of lockdowns and social distancing. My usual list of environmental allergies that normally are annoying (near constant rhinitis) rather than a major problem are much, much worse this year. Being stuck indoors at home much more than usual, particularly with my other half WFH (she feels the cold, so I can't fling windows open like I normally would), means that the combination of central heating, carpets, double glazing and dog results in my allergies escalating dramatically. Stuffy air (the house is warmer than I would have it if it were just me here during the day), dust mites, dog dander etc., annoy my eyes, skin, nasal passages, sinuses, ears, lungs, etc. I've ended up on asthma inhalers this year, which I have never needed to do before. I'm also on anti-histamines every day to calm things down, and would be taking stuff called Montelukast if it didn't mess with my head (it was really effective in stopping a persistent cough, but made me feel awful in other ways). I've put a HEPA filter in our vacuum cleaner, and replaced pillows and duvets by non-allergenic versions (from John Lewis). Replacing carpets by wooden floors is a longer term thing to reduce allergens in future. The dog's rugs, bedding etc get washed far more often than they used to. Even when I walk the dog, to maintain distance from other people, I've had to change where I walk this last year. That's exposing me to other known allergens - ferns and molds, which makes things even worse. My immune system reacting to all this stuff, not only resulted in asthma, but a nasty form of eczema, where my hands were covered in tiny blisters (something called pompholyx). Steroid cream helped that (I think it was Eumovate), but it's still not completely back to normal even after 6 months - it's getting better though. Moisturising lots helps, but it's the steroids that really clobber it. As soon as I've had the COVID vaccine (both doses) and allowed the 10 days or however long it is to get to full effect, I'm going back to my old dog walking haunts again, although still distancing there as much as possible. I'm sure heightened stress levels for a prolonged period this year have made things worse too (both myself and my other half have medical conditions, and I'm also the primary carer for an elderly relative with alzheimers and serious health conditions, so this year has been difficult). Stress (and temperature changes) are known triggers for my hives. I'm hoping that come the summer or autumn, stress levels will reduce again as a result of vaccination etc.
I also, as a result of using alcohol hand sanitiser, ended up with cellulitis (the alcohol dried out my skin so much that some bacteria, probably from stroking the dog, got in through cracked skin). Thankfully, my other half encouraged me to get a Livi online GP appointment (which happens same day in my experience), and the Livi GP told me to get down to A&E. I had to go back five days in a row for an antibiotic drip to sort that out.
Whether it was the after effects of the cellulitis, or the eczema, or something else, I ended up hyper-sensitive to anything touching my skin. I ended up wandering around in a sarong for a few weeks as anything more felt like it was cutting my skin. I also ended up sleeping in a recliner chair rather than a bed for a couple of weeks as laying flat was too painful. Thankfully, other than my hands, that's largely gone now, but I still cannot touch anything with an edge without my hands feeling like they are splitting.
Sorry, that went on a bit. I probably should have stopped with the takeaways at the top
I WFH anyway and have done for years, so I very much doubt this year as played any part in my illness. In fact, I was probably ideally placed to survive a pandemic as I hate socialising anyway.
I've used sensitive/natural products for years as I have suffered with eczema/rosacea etc. for a long time. Same with bedding and all household products. My house is temperature-controlled because of my past issues.
I am allergic to steroid creams and have tried every single antihistamine going to try and solve the hives, in very strong doses at times. They made the itch worse.
It’s unlikely 75mcg levothyroxine is high enough dose, unless you are extremely petite
Pins and needles is frequently linked to low B12 and/or still being under medicated
Which brand of levothyroxine are you currently taking
Do you always get same brand
guidelines on dose levothyroxine by weight
Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on, or near full replacement dose
Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.
Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.
RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.
For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.
For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).
If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.
A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.
I will do. I was told my results were good in a Thyroiditis Facebook Group. They asked me to post my results to check optimal/normal, but then assured me that they were optimal. But that was just T4 and TSH as I have been too ill to get to the docs to collect the other results. It is quite likely that these are normal but not optimal.
It is an autoimmune disease like Hashimoto's Thyroiditis. And once someone has one autoimmune disease they are at much greater risk than the healthy population of getting another one.
You would need to be tested by a doctor of some kind - possibly an endocrinologist, although I'm not sure.
Personal anecdote (so take this with a pinch of salt)
I have improved the state of my skin enormously by keeping my level of vitamin B12 very high (well over the range, in fact). B12 isn't poisonous and there are no known issues with high levels.
In order to make best use of B12 in the body it is essential that levels of folate are kept optimal. Many of us have found that folate is optimal in the upper half of the reference range. Going over the range with folate isn't recommended.
I also need to keep my levels of ferritin and serum iron as close to optimal as I possibly can or else I get various skin problems returning.
Thank you. I'm going to get a copy of my second lot of results to look into this more. I think it is very likely that I have another autoimmune disease at play too.
A lot of people have all sorts of symptoms when on Teva. As you’ve just changed brand, if some symptoms clear up, it might have been Teva, so you’ll know to stay clear of it in future.I hope you feel better soon.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
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allergic to levo help 
Hiya, I'm new and worried.
I'm in pain
Do I need selenium if I'm taking NDT? 
