Hello, this past year I have been diagnosed with both Hashimoto’s and CSU. I am not being treated for Hashimoto’s since my TSH is fluctuating wildly while my thyroid and immune system battle it out. As for the CSU - I have struggled with intense itchy skin and hives for the best 6 months and is slowly destroying my life. It’s antihistamine resistant even when taking 760mg fexofenadine a day, which is what my dermatologist prescribed. I was on montelukast 10mg twice a day also but made me very anxious so had to stop. During this time the only respite from the itch was when I was on oral steroids (2 5 day courses - my GP refuses to prescribe me more) and I also was on Xolair injections for 3 months under my private insurance. These were helpful but my insurance would only cover for a very short period of time, and was unable to continue the injections under the NHS as it was deemed my physical hives weren’t bad enough (due to lack of photos taken at the time and before I started the Xolair injections.) I’ve had so much time off work due to major fatigue and don’t know where to turn. I did see an endocrinologist who didn’t think the itch is related to my Hashimoto’s/ongoing thyroid battle. But I’m not so sure. I’m going to start eliminating things starting with dairy immediately. Doesn’t anyone have a similar story? Is there a light at the end of the tunnel? I’m so low and stressed and worried about how I’m going to be able to keep my job, my house etc… if I can’t find a way out of this situation soon. My TSH over the past few years has been fluctuating between 2.5 and 5.5.
Hashimoto’s and chronic spontaneous urticaria s... - Thyroid UK
Hashimoto’s and chronic spontaneous urticaria simultaneously?
That sounds really rough. You have my every sympathy.
First thing to say—I’m not sure that their rationale for not treating your Hashimoto’s holds water.
“I am not being treated for Hashimoto’s since my TSH is fluctuating wildly while my thyroid and immune system battle it out. ”
They don’t necessarily need to battle it out. If you were given replacement thyroid hormone in sufficient quantities it would switch off your own thyroid function and stop (or at the very least dampen) the swings.
And if you weren’t swinging wildly between hypothyroid and even more hypothyroid states, there’s a chance you might not be struggling with the urticaria. If it were me, I’d definitely want to see if it could help, being prescribed some levothyroxine.
Thank you so much Jazzw for replying so fast. I’m so anxious about this situation I can’t even begin to try and sleep tonight. The endo said that if he gives me levothyroxine then it could risk sending me into hyperthyroidism when my TSH levels drop to more normal levels. What you’re describing seems quite different. I’m really struggling to trust any doctors at the moment having been struggling for so long with no actual answers. My endo gave me a prescription for a baby dose of levo (Levothyroxine sodium 12.5microgram tablets). I haven’t filled it yet because what he told me scared me, plus the dosage is so low it probably wouldn’t have any impact anyway. Should I fill it and give it a go? I couldn’t feel much worse currently!
Have you only ever had TSH tested? Do you know what’s happening with your FT3 and FT4 levels?
I suspect your endo is worrying about the wrong thing. Your TSH level isn’t the thing to watch, it’s your levels of active thyroid hormone. If FT4 and FT3 aren’t being measured there’s no way of knowing what’s really happening as your TSH goes up and down. But maybe you do have those results?
Many of us experience a variety of skin issue that get better when we treat our thyroid hormone levels.
My rosacea has cleared up entirely, and although allergies (including skin hives and itchy rashes) are pretty complex, there is a link to sub-optimal thyroid hormones as well.
I also agree with Jazz that with your story we would suggest now is a good time to prioritize your thyroid overall.
That being said - we know nothing about you except this one post.
Do you have any other blood work to share other than TSH?
Ps. I tried montelukast at some point - awful wasn’t it!
Omgoodness - so awful! So glad I managed to flag what it was doing to me anxiety wise and get off it. Guess I’m not the only person who has experience bad side effects on that pill. Besides it didn’t help touch the itch anyways!
I have attached my results from blood testing ran last Thursday. Hopefully it helps give a clearer picture.
Hopefully it has the FT3 and FT4 levels Jazzw was asking after also.
Thank you so much! Just feeling less alone in this nightmare means so much in this moment. I have been crying all day x
Do you happen to have previous results for FT4 and FT3 when you say your TSH has bounced around… have those too?
edit
And I don’t suppose you have any of these:
-b12
-D3
-folate
-ferritin (and/or any iron measures)
And
Any antibodies ever tested : like TPOab or TGab?
My last thyroid function test October 1st results:
Elevated TPO…. Do you have the number for that line item?
OK. So Iooking at those results, I don’t think that taking thyroid hormone replacement would tip you into hyperthyroidism. Your TSH is literally screaming at your thyroid to make T4 but your FT4 is sitting at 17—because your thyroid, already battle-scarred from autoimmune disease, isn’t up to pumping out more. And while we’re not big fans of the Total T3 test here (we like Free T3 results better), that’s sitting mid range too.
You are right that taking 12.5mcg levothyroxine won’t do a lot. That’s been prescribed by a doctor who really doesn’t understand how the hypothalamus-pituitary-thyroid feedback loop actually works. That might seem alarming but it’s depressingly common these days.
Ideally, you’d start on 50mcg levothyroxine unless you’re elderly or have a heart condition. The guidance says you can start higher than that but given your other woes, 50mcg would be a nicely conservative starter dose, to get your body used to having replacement thyroid hormone on board.
And replacement is the word. When we take thyroid hormones, we aren’t topping up our levels like you do when you take vitamins, we’re replacing the function of the thyroid. Your thyroid will stop bothering to make its own thyroxine and your body relies on having the tablet version instead.
Starting on too low a dose makes things worse because it can be enough to switch off your own supply but nowhere near enough to function on.
I’m sure others will chime in with advice but in your situation, I think I’d go back to my GP and ask for a prescription of 50mcg, try it for 8 weeks and see how you’re doing via blood tests. If it’s going to help, you’ll ultimately need more than 50mcg as it isn’t a full replacement dose unless you’re very petite.
And with luck and a fair wind, it might help the urticaria too. It’s got to be worth a go. With autoimmune thyroiditis, your thyroid will eventually stop functioning over time—and you’ve been suffering long enough already.
Thank you for the advice. My GP flat out told me I wouldn’t be prescribed levo as my TSH was in ‘normal range’ and they referred me to an endocrinologist who also came back saying that there was nothing to be done aside from try and see a dermatologist about the itch which they did not believe to be related! Which I have already exhausted of course, I saw a dermatologist earlier this year who put me on mega doses of antihistamines and montelukast which didn’t help my itch and made me feel even worse. I don’t trust anyone right now who is ‘supposed’ to know what they are doing. Are there ways I can get a prescription on my own? Happy to pay to get me on the right healing path and no doctor is prepared to help me. I could fill the prescription my private endo reluctantly gave me for 12.5mg and take 4 a day, but he only prescribed me 90 pills so they’d be used up pretty fast and before they’d have a chance to really show any benefits 
Well as we like to say around here….
WELCOME TO THE FORUM!
You have come to the right place to get info, shared experience and to clear up the horrible confusion we have when our thyroid starts to under-perform…. And doctors unfortunately do not know just how much in the body is impacted by it!
See the image below - Your elevated TPO indicates an autoimmune cause for your thyroid’s faulty performance, which is important as you can confidently proceed knowing that your thyroid will only deteriorate over time and so starting on Levo is a very standard and reasonable approach (not at the level they provided, but that’s another issue.)
Did your doctor provide the diagnosis of autoimmune thyroiditus, or Hashimotos, or something like that?
Also, in my next reply I will show you an image of what healthy people’s TSH looks like. With a result of 4, there is statistically nearly a zero chance that your thyroid is functioning properly.
I share those two points because if your doctor hasn’t told you that definitively- it will make you more confused as to what you have and what you are treating.
For reference and to increase your confidence on the facts of the situation….
Here is a chart showing the distribution of healthy peoples TSH. Nearing 4 even with no other indicators is an issue.
But this plus your antibodies gives you a clear answer that your thyroid isn’t working well anymore!
Thank you for sharing this valuable information and for the warm welcome and support ❤️
I’m really disturbed that a specialist wouldn’t be wanting to help me, else just not understanding their speciality enough to help me - I don’t know which one is more disturbing! I need to find a GP who will help me, and will travel far and wide to do so.
Is there any advice that could be given to help me find someone who can help me please?
I’m really in a very bad place.
Thank you so much nice again, and to @Jazzw also! 💕
So what to do about it. Others on this forum have better written answers than I do.
But key points are- Levothyroxine does not “top up” your thyroid hormones.. it replaces it. Once your body senses you are taking it and it’s in your blood, then your body senses it’s getting it elsewhere and will slowly stop making its own .
This is totally fine and normal!
But it does mean that you need to start this hormone with the understanding that you will slowly increase your dosing over time until you reach your full replacement. As Jazz notes, this is usually to start on 50 a day, and every 6-8 weeks you get a blood test and increase by increments of 12.5-25.
I will also point out that it is extremely common for those with autoimmune thyroid issues to also be gluten-intolerant. EDIT: test does indeed say negative! Although some people here do go gluten free and get relief from symptoms. The more you read up on the role inflammation plays on our bodies the more it makes sense. I have gluten free on my long list but it is a commitment!
Lastly, underactive thyroid leads to low stomach acid, which leads to poor absorption of key vitamins and minerals from our diets.
You appear to be catching this on the early side, and your vitamins are not terrible. But each needs to work to being up to optimal (this is NOT just “in range.”) D around 100, B12 top of range over 500 at least, ferritin 100, and folate top of range.
And lastly, lastly- you will also need to come to terms with the fact that your doctor is not quite as knowledgeable as you need them to be. That almost all of us on here have the same issue. And as if navigating our health isn’t enough, we get pretty good at navigating a doctors ego, and the health care system overall. They don’t make it easy!
edit - I am not in the UK, and so will ask others here to give advice on how to get what you need. I think that the fact that you got any Levo prescription means you have a good chance of getting the right Levo prescription.
I think that’s a better bet that finding a doctor who knows anything about the thyroid. There’s a global problem with that!!
|
And…. You are not alone. I recommend your browse the forum. You will find many similar stories and many of us who have had our quality of life restored through the wisest most supportive Internet forum you will ever find.
My private endo said I didn’t have celiac
Why am I even shocked? 😢
I thought it looked pretty low on that test though… they don’t care unless it’s outside of the normal range… never mind when it’s hovering right on the edge!!!
I’m so upset and angry and frustrated… I’ve been feeling so awful for so long and now I have to battle to get a GP onside to actually help me feel better? How did it come to be this way…
You’ve been super amazing and supportive though. I really hope that I’m able to get the help I need soon!
your TTG IGA…
edit re gluten :
Your test does indeed say negative! Although some people here do go gluten free and get relief from symptoms. The more you read up on the role inflammation plays on our bodies the more it makes sense. I have gluten free on my long list but it is a commitment!
and
Yes
You will have your feelings on how long you felt bad and how long doctors just didn’t know what to do. We all go through it : (
Which line did you read wrong… around the celiac?
Thank you for clearing that up! I’ve already started limiting dairy and gluten. I’ll do anything to feel better. Thank you so much for your support tonight. I will try and get some rest here but will keep you updated as I continue along my journey… 🤗💕
If a Brit can post here for Pugmama the NHS guidelines that will help her ask for the proper 50 starter dose?
I think that’s the best next step…!?
Hey PugMama78
I just scanned the above as I was closing tabs and saw this reply you wrote, which I didn’t see earlier as I was already down the page : )
for 12.5mg and take 4 a day, but he only prescribed me 90 pills so they’d be used up pretty fast and before they’d have a chance to really show any benefits
So it turns out he DID prescribe the 50 mcg starter dose…
Although strange to suggest taking it split in 4! it does still get you there though!
So! Yes, your challenge will be to make sure once you start you can continue getting refills.
You are much closer than you think to starting the right treatment … now you just need to navigate the healthcare system there to get reliable refills.
Hello again, the private endocrinologist didn’t want to prescribe me anything but I begged them. They didn’t prescribe 50mg, they prescribed me 12.5mg per day. It was my idea to take 4 pills to actually make up a reasonable starter dose. What I’m concerned about is that if this medicine stops my thyroid creating it’s own hormones and acts as a replacement, then how would 12.5mg ever be enough for a struggling thyroid? I ordered the pills last night. It feels really risky as I only have a starter dose for 3 weeks. Hoping after a few weeks I start to feel some benefits, and then I can go to a GP and beg to let me continue. If they refuse, will it be too late for my thyroid, I.e. will it have already stopped producing its own hormones in 3 weeks? Sounds like an awful strategy, but maybe it’s the only way to force the issue. Plan to stop it myself so my levels be consistently worrying enough to finally get treatment.
PugMama78
Welcome to our forum,
How miserable for you ☹️. Yes, I agree to stop dairy, and gluten. I initially gave up all grains. Also you might find it helpful to investigate a low histamine diet.
Read ‘The Root Cause’ by Isabella Wentz for good understanding of Hashimotos far reaching effects, and how to calm an over reactive immune system.
One of my earliest symptoms was spontaneous urticaria. I completely understand how miserable it is. For me, would always start around about 10pm, beginning with my legs and spreading to my torso and hands. Nothing relieved it. Then it would go away for weeks, and come back. It wasn’t an allergy, and antihistamines did nothing. I changed laundry powder, stopped using soaps etc to try to work out what it was. I never felt my GP believed me, but my husband saw my skin coming up in hives so at least I had someone telling me “that’s not right”.
Fast forward about 9 YEARS, and I now know that I have hashimotos and might have had it throughout the period that I have been complaining of symptoms. GP didn’t test for it, but I got the tests done privately.
I have had to advocate pretty insistently to get treatment, and have been taking levo for the last couple of months and whilst dose is still not right, I think it is helping. I have also found out that I was deficient in folate and very low on vit D, low on B12 and low on iron and am self supplementing to try to improve my levels, so improvement could also be related to the increase in vitamins.
I’m not an expert - very much still learning but just wanted to reach out and say you’re not alone, and to encourage you to keep advocating for yourself, and to ask for a different GP if you need to. “Within range” is not the same as “feeling well”.
I didn’t recognise how many things I had that were thyroid symptoms to begin with, so didn’t advocate particularly well for myself. I would suggest having a read on the Thyroid UK website and making a note of all the symptoms you have, as you might have some symptoms you haven’t even particularly registered because they aren’t the worst you’re experiencing! Make a list to take with you to go through with the GP and to ask for a trial of treatment.
CyclingMummy thank you so much for sharing your story ❤️
Joining this forum is the best thing I’ve done this year. Finally people who understand and don’t treat me like I’m losing my mind. Your reply made me cry… I’m always on the edge of tears these days anyways it seems!
I really hope that you continue to feel better soon. Can I ask if you still have the urticaria? It’s by far the worst symptom and is torturous. I’m scared for what comes next if I can’t get it under control.
The overall condition of my skin is gradually improving - much less dry and less pale since I started treatment. I am still having outbreaks at night, but not with the original intensity, and not lasting for as long, so hope that is a sign of my system adjusting and calming down (in my case to a combination of being medicated, starting vitamin supplements to address low levels of B12, folate, vitamin D and ferritin, and removing gluten from my diet, which I began a couple of weeks ago).
I have found various articles which clearly link Chronic Urticaria with autoimmune cause, with a high incidence of thyroid disorder in patients with CU. There is research (as well as the other replies to your post ) that suggested Levothyroxine completely resolved symptoms for hashis patients for whom antihistamines and steroids had done nothing, so fingers crossed for us both!
The kindness with which my first post here was met made me cry too: it was so affirming to know I’m not a hypochondriac or a fraud, and that there is a pathway back to health after so long gradually feeling worse and worse.
Thank you for getting back to me 💕
Sounds like you are making lots of positive progress on your healing journey. Well done on implementing so many changes. Can I ask which supplements you are using, and if you began taking them when you started levothyroxine, or if you waited a while? I’ve only been taking for 2 days, and don’t really know what’s best. Maybe I should wait for my appt with my thyroid specialist on November 5th?
I really hope that our itch is totally gone soon! It’s debilitating as it stops me getting adequate rest, and I’m feeling so exhausted and have had to miss a fair amount of work too. Really horrible state of affairs! But so positive that this is the start of me feeling better, and hoping the same for you too! ❤️
I started levo at 25mg and had a Medichecks advance thyroid suite of tests done after 8 weeks, then targeted supplements at the things that showed up as either deficient or low in range (as well as using test results to argue for a dose increase to 50mg Levothyroxine.
Currently taking Better You oral spray Vitamin D and K, and Igennus B Complex. I took B12 spray for 6 weeks to boost my B12 level. GP has prescribed folic acid. I have not found an iron supplement that suits me yet, but if you look on my post history you’ll see the recommendations I got from the lovely admins and folks here.
Well done for overcoming all the hurdles - so pleased you have found someone to listen properly and to help you.
I don’t know if this is relevant but I get Uticaria without a rash or any other skin symptom apart from itching. This came out of the blue about 8 years ago. I could itch anywhere from inside nostril 1 second to any other part of my body the next. Blood tests can back negative for everything except one of my liver ones was on the border of being high.
I have autoimmune hypothyroidism but my levels were stable.
I tried cutting out things but concentrated more on my environment such as detergent, bedding had to be anti allergen, removed plants from the house etc. it slowly went but not entirely but came back periodically mainly every Autumn as when it first started
I had to have high dose Prednisolone in 2022 for a serious health issue and as you say the itching was non existent. I have been suffering again the last few weeks with it being mainly on my right forearm near my elbow, this drives me crazy.
I am now thinking is lack of UV on my skin in the Autumn so have started taking Vitamin D although only 12.5mcg to see if it had has effect, only been on a couple of days so time will tell. I took this dose all last autumn and spring but cannot honestly remember if I had the itching or not.
As I have autoimmune Hypothyroidism and Autoimmune Haemolytic Anaemia maybe it’s another auto immune issue but the Autumn thing baffles me.
One of my GP’s once told me that when you scratch it causes more histamines to be released, not sure if that is correct.
I will follow your post o see if anyone has any insight into this as I never got to see a dermatologist.
I hope you can find some relief
Hello thyreoidea , and thank you so much for your kind reply 💕 what a challenging journey we have to endure at times! I think it’s correct that scratching the itch does make it worse, but not scratching is easier said than done, especially when it’s 2am and you still have had no sleep because your body feels on fire with the itch! I’ll keep all responders updated as my journey continues. All crossed that I find a GP actually willing to help later today. I’m bringing mum and dad for support, as they can help advocate and are witnesses to how debilitating this has become. I’m scared for another rejection, but I can’t give up. ❤️
hi thyreoidea Sounds like you have a neuropathic itch?
I have that too every once in a while. Others here have used capsaicin with some success.
naturalendocrinesolutions.c...
PugMama78 often internet articles aren’t too helpful, but this one is pretty good in breaking down the causes of itch for us hypo folks.
Hi, some amazing advice from everyone as always. I have told my husband to put "she was always within range" on my gravestone. Honestly wanted to scream every time I heard that. I even went to a doctor who had graves and thought omg yes someone who understands... alas it was not to be. Please start looking into the gut healing/low histamine eating style. It saved my life. I was not celiac, dairy intolerant etc via testing either. However reducing/removing these from my diet gave my body a break. I still get a relapse if I indulge in cheap pastas (for example) however I can now eat the occasional slice of processed bread with no issues. I can eat any fresh made breads or pastas in Italy or at home so it's not all bad. Your system is currently overloaded so removing any perceived threats will bring relief. It worked for me, took 6 weeks but rarely get a histamine response unless I have a weekend away with friends where I don't want to be a nusiance. I also take 100mg of Eltroxin/levo and had to advocate for that. I have hashimotos, I thought getting a diagnosis was a pathway to sorting everything out, when I asked the endocrinologist what's next he said "nothing we don't treat it" but at least you have a name for it. It was only coming on here that I understood what was happening within my body. X
Hello Sh4rn4mo 💕 and thank you for taking the time to respond to my post. I’m feeling so much gratitude to the kind people out there taking the time to offer me the support and information that I need to help advocate for myself. I’m already dairy free but early days, and reduced gluten a lot but working towards total elimination. I’ll do whatever it takes. It’s the itch that’s driving me insane, and preventing me from getting adequate sleep required to function like a normal human being! Your story, along with so many others on here, is inspiring and giving me some hope when I was feeling pretty beat up and hopeless. Thank you so much. I’ll continue to update this post as I move forward on my journey. ❤️
Short and sweet reply. My urticaria has completely cleared up now I'm being treated with Levothyroxine. Titrating upwards at the moment. I'm up at 112.5 mcg now. Also skin no longer dry and itchy.
Hello Agitator23 , thank you for your reply. Yours really does give me some hope that there is a light at the end of the tunnel in regards to this horrible and debilitating itch. Thank you so much for taking the time to reach out to me today ❤️
Sorry for bug you again Agitator23 , but may I ask how long it took for your urticaria to resolve once starting levothyroxine? Did this only occur once you had achieved optimal levels, or was there relief as you titrated upwards?
I think you've probably had enough helpful info here, but I just wanted to add that I was only borderline in terms of TSH, but they started treatment because of the antibodies. My GP said it would only get worse, so may as well start treating me now.... that was around twenty years ago.
Thanks for the reply Ruby1 . I’ve been struggling to find a GP/specialist to see things in the same way that your GP did 20 years ago. I’m glad you were able to get the help back then, and hope that you are doing well now. I’m seeing my GP again today (a different one of course) to fight the fight again. Trying to not get too hopeful but it’s hard! ❤️
I was very lucky because my GP was hypothyroid himself and told me he had been on the brink of treating himself for depression when he did a blood test. Sadly he has retired and it's now almost impossible to see a doctor.
Wishing you the best of luck. You could try asking ' Would treatment now help alleviate the symptoms as my thyroid degrades? Is it only going to get worse'
Starting for 3 weeks and stopping won’t entirely suppress your thyroid - but - with thyroid hormones in general it’s important to ramp up and not give your body whip lash.
Taking Levo takes about 6-8 weeks to “settle” based on the way it builds up in your blood. It is not like an ibuprofen where you take it and it works immediately for 4 hours then it stops.
Changes you make now with Levo will build up and stabilize over the course of 6-8 weeks.
So when you start it would be Id say essential that you have your next refill in hand.
This might help -
cks.nice.org.uk/topics/hypo...
I think it’s the NHS guidelines for Levo dosing (although I can’t see it from the US haha!) but it may help get the right 50 mcg starter dose.
But a UK person should come along and advise!
Thank you FallingInReverse 💕
I managed to get an appointment with my GP today and trying to figure out how to approach this appointment. I’d rather receive a prescription through my GP at the proper dosage right now, than go my other route… and take 4 pills of the micro dose prescribed by my private endo. I’m so anxious about the appointment. I’m bringing my mum and dad along for support. I’ll keep you updated on the outcome ❤️
My private endo said I didn’t have celiac
I was tested for celiac and the result was negative.
When I gave up gluten as an experiment I found that my chronic indigestion improved enormously. I stayed gluten free for five years, then relapsed and ate whatever I wanted. I then developed severe indigestion again, and I have now gone gluten-free yet again. Maybe this time I'll manage to keep it going permanently.
I've never been diagnosed with urticaria. I had other skin problems - eczema in random places but mostly my hands and wrists, and spots on my face for decades. Both problems began as I approached puberty.
I discovered that both my eczema and spots disappeared for the first time ever in my 50s when I raised my serum Vitamin B12 with methylcobalamin, and got it up to 1000+. I keep my active B12 at 100+.
I did find that supplementing with cyanocobalamin achieved nothing. It had to be methylcobalamin.
There is no danger in taking high doses of vitamin B12 and having high levels in testing that I'm aware of. But it would be worth trying for other skin-related problems I think.
perniciousanemia.org/b12/fo...
perniciousanemia.org/b12/le...
perniciousanemia.org/b12/le...
stichtingb12tekort.nl/weten...
stichtingb12tekort.nl/engli...
Thank you so much humanbean for responding to my post, and providing information around the b12 supplement that helped you, and these useful links! Along with taking levothyroxine I am starting to look into other steps I can take to be as proactive as possible in helping myself get healthier. Really appreciate your thoughts around how to potentially help my itchy skin issues, I really need to find some relief soon! 🤗
My personal opinion is that your chronic hives need to be treated with levo thyroid hormones , and at a much higher dose than 25 mcg . Jazzw, and others have ablely explained this to you. I had under range FT4 for 2 years after which it practically halved to FT4 5.5 (12-22). My TSH was in normal range throughout.
I had a spell of a couple of months where my neck was covered in large red lumpy spots which were outrageously itchy, 24/7. FT4 was around 10 (12-22), normal range TSH. I wanted to claw at my neck the whole time. Nothing seemed to help. It was during covid lockdown when impossible to see a doctor.
You say that oral steroids helped but you can't get anymore prescribed. It is possible to buy weak hydrocortisone cream , over the counter, which might be something to try. Nature Provides, high strength , sub lingual Vit B12 adenosylcobalamin and methylcobalamin (the 2 active forms) is something you could try. Your B12 levels are sub optimal and need to be nearer top of the range. Those of us prone to eczema ( myself included) often find high strength B12 can clear it. So B12 can be helpful for skin problems. You could also see if Vit B12 cream would have any effect. Vit B12 levels seem to always be problematic when hypothyroid, as you are.
The other thing you could try for the hives to see if it relieves the itch is an "after bite" pen, which smells of ammonia. Chemists sell them. When I get an itchy red spot now, which I used to think was a bite, but is likely vasculitis , I use an afterbite pen . It often relieves the itching.
Your core vitamins , as members have/ will explain to you , also need to be near the top of their ranges-Vit B12, folate , ferritin and Vit D.
You have already twigged that diet ( absolutely not dieting) is important going forwards, to get anywhere and that you will need to test your thyroid and vits privately to understand what needs to be improved and by how much.
We all understand your frustration and difficulty trying to get any sort of meaningful help. Unfortunately, it is all too common on this forum for members to have encountered something similar to yourself , when attempting to get help. Good luck. Post on the forum. Members will help.
Thank you Wua13262348 for taking the time to respond to my post, and apologies for the delay in replying to thank you. I’ve been overwhelmed with kind responses, and only found that I had not responded to yours today. It sounds like vitamin b12 is a big one for the skin, so I think I’m going to start there, as I’m trying to return to work and the itch is currently my biggest hurdle. Thank you for your suggestions. The vitamin b12 cream sounds interesting also, maybe hitting it both internally/externally at the same time? 💕
Jazzw , FallingInReverse and all other lovely people who responded to my post.
I got back home from the NHS GP just now. A very upsetting experience - was told yet again that I don’t have any thyroid issue and thyroid replacement hormone therapy would not be prescribed by the doctor I saw along with any other NHS GP - based on all my recent results, including the elevated TPO and despite having every symptom of hypothyroidism under the sun. I don’t really have much more to add. I feel beat up - black and blue. Maybe I’m just losing my mind.
Thank you all for your ongoing support 💕
Oh no! Why is everything so so hard?
I don’t know how we sort things out—everything’s just going down the pan. Today, my friend’s 3 year old ended up hospital with a rip roaring ear infection. The GP point blank refused to accept that there was any infection when she took him to the doctors yesterday. Refused to do a swab (this poor kid has had recurrent ear infections since last winter and at one point was diagnosed as having pseudomonas which is a really tricky bug to get rid of. Did they prescribe the right antibiotics even then? No they did not!). A&E have confirmed that the GP from yesterday was an absolute idiot.
Anyway, back to you… Big hugs xx
There is a nuclear option. It’s one I took myself. And that’s going down the self medication route.
But before you do that, I would suggest getting some private blood tests done to test thyroid function as well as B12, folate, ferritin and Vit D. Looking at earlier results—which I hadn’t seen until just now, many of your nutrient levels are in your boots. You may get some relief optimising as much as you can—getting your ferritin levels up, getting your Vit B up (and not just B12–the other Bs are likely to be low in range).
Once you’ve got a set of baseline results, it’ll be easier to see the wood for the trees.
Grrr, I’m so frustrated on your behalf. 😢
Hello Jazzw , FallingInReverse and everyone else who has responded to my post sharing your advice and support ❤️
Update: today I reached out to one of the thyroid specialists listed on the thyroid UK website. I gave them the brief rundown; fluctuating TSH, mostly over 4 or 5, elevated TPO and all the symptoms I’m struggling with, and they are happy to help me 
I have a first appointment with them on November 5th. In the meantime they advised I fill the levothyroxine prescription reluctantly given by the private endocrinologist and start taking 12.5 tomorrow, and increase to 25 in a week if tolerated okay. They said that we will work together to find the right dose to level me out, and will then write a letter for my GP requesting they continue to support me, once we have found that balance. It’s going to cost to get this help, but I can’t put a price on my health, so I’ll make it all work somehow…
I literally cried and cried like a baby… I can’t believe there is someone finally hearing me and taking this seriously.
I know there’s a long journey ahead, but I’m going to remain positive that everything is happening for a reason and that this could be the start of me finally feeling a little better / back to myself.
Tomorrow I take my first tablet. A baby dose… but baby steps is okay. Trusting I’m in better hands now. Im scared to ever trust a GP again after this… it’s so scary that so many people have to jump through these hoops to get the help they need.
Thank you again all… I’ll be keeping you updated and hoping I can pay it forward in the future and help others as you have all helped me 💕❤️❤️
Hurray!
Getting better is a long journey, but you are now on the right track and it’s a matter of time. A far cry from the confusion and hopelessness of feeling around in the dark and being gaslit and thinking there is something mysterious and horrible happening to us.
Do take the 90 pills you have and create a ramp up period where it lasts you until you get a refill at your next prescription.
Low and slow is the name of the game but you do NOT want to start and stop and go up and down with your dosing .
You have 18 days til your Appt.
I’m guessing planning to get a refill at that appt.
You have 90 x 12.5 =1,125
Let’s say you plan for 25 days that’s an average of 45.
So you could start with 12.5 if you want for a few days/week
Go to 25 for a few days/week
Then do 50 for the remaining days.
Your goal is to get on 50 steady for a solid 6-8 weeks. Until you then get your bloods again.
You’d do best to start at 50 as long as you don’t have any intolerances to any fillers (like lactose or something).
But whatever the plan, just make sure you don’t whiplash the dosing if you can help it.
Thank you 🙏
I started on 25 levothyroxine yesterday, and took my second dose today. My thyroid specialist has said take 12.5 for a few days to a week and then go to 25, but knowing what a low dose 12.5 is I wanted to try starting on 25 and see how I feel, since I’d be there shortly anyways. Very early days. Had a blast of energy yesterday I haven’t felt in a long time, very aware it’s probably placebo effect, but I’ll take it anyways
I’ll stay on 25 until I see my specialist in a few weeks time, they seem to know what they’re doing so I’ll stick within their guidance at this time. I didn’t have to do any extra blood tests for them, as I had a thorough work up a few weeks ago. The only test I didn’t have to share with them was my thyroid globulin antibody, which is one test that hasn’t been ran on me yet, but they said they could work without that if finances are tight. Would this test be the one to confirm Hashimoto’s? Still learning so much!
In the meantime, should I start working on taking any vitamin supplements, or should I wait until I see the specialist? I take a liquid multivitamin and a separate liquid vitamin D spray, as I heard it can help with skin issues. Sounds like B12 is a key one, and sure there are other too…
Been doing really well eliminating gluten and dairy and pretty proud of me
I was mad at myself for getting so upset at my GP last week, but trying to let that all go now. I guess the whole system is quite broken, and there really is no single GP/endo to blame maybe… and getting angry and upset won’t be good for me as I move forward.
Thank you again - will keep you posted as I move forward, but sooooo happy I found this little support group. It has been a game changer and I’m grateful to you all for your ongoing advice and support ❤️💕
Starting at 25 is fine if you want, but unnecessarily low. But fine!
One benefit is being on the lookout for allergies to fillers. Some brands of Levo have lactose, some have acacia. Some people are allergic to those.
It’s a good idea to get the same brand every time. But in any case - be aware of the brand you are taking as there are sometimes differences that matter to some people.
You’re on your way so now just get the longer term goal in mind.
The goal is to increase low and slow until you reach full replacement dose.
Low means no more than 25 mcg increments, and sometimes 12.5 increments. So you should next increase to 50, but after that might increase to 62.5, before going to 75 mcg. But many people go from 50 to 75, for example. It’s anll very personal .
And slow means staying on a steady dose for 6-8 weeks before testing again and increasing again. This part isn’t personal, it’s just biology. Levo has a 7 day half life, and so it’s just the nature of our bodies that you have to wait 6-8 weeks in a steady dose before testing your bloods again will give a useful result.
As you get closer to replacement dose, many of us find when we stay longer than 6-8 weeks we just feel more and more settled.
A very broad target dose is 1.6 mcgs per kilo of body weight. But we are all different and this is just a big broad guideline.
Many of us end up at 75-150 mcg Levo a day and sometimes higher.
Healing is often an up and down process. It is extremely common to feel worse before feeling better. It is extremely common to have very good days AND very bad days. It is very common to take about a year to work up to a full replacement dose. These hormones affect our entire bodies head and brain down to our tippy toes. And deep into every cell.
Many find week 5 after a dose change is the WORST and we’re ready to throw in the towel. But we are all different- some people are smooth sailing!
It takes time for a daily dose to build up and stabilize to a steady level in our blood.
Patience. Be encouraged! And do not be discouraged if you crash or dip for a day or a few as you start off.
Come back to this board whenever you want, for whatever you need. To see if something is normal or to get advice from others who have been there done that.
As for vitamins, you will also over time focus on these 4:
-d3
-b12
-folate
-ferritin
And if ferritin is low, getting a full iron panel ( including iron, transferrin saturation percent, TIBC, UIBC and a measure of inflammation called CRP-HS.
Do not supplement unless you’ve tested those first. So either ask the doctor at your appt and see what you can get on the NHS and/or plan a medichecks.
We frown upon multivitamins on this board. They often give you too little of what we need, or things we don’t need at all or could be harmful (sometimes iodine for example), or combine things that block eachothers absorption when taken at the same time (like iron). They are usually just a big waste of money.
TGab confirms Hashis. Which as I said earlier should just serve to give you confidence that thyroid hormone replacement is the right course. Autoimmune thyroiditis is a one way street, with your thyroid slowly dying, and knowing it will not recover.
Many people get that diagnosis and never test antibodies again. Some people track antibodies as a reflection of their bodies autoimmune response. A thousand pages could be written on this idea alone so we’ll leave that for another day!
Lastly, losing our cool at our doctors is easy to do.
When I’ve done this or when I read about others, it is so highly emotional to think about.
We are dealing with our own failing health in the face of those who get our tax dollars/money to help us.
And instead they gaslight us through incompetence or arrogance PLUS they actually dehumanize us and truly do not care. We are cogs in a wheel to be disregarded and mistreated and talked down to when we are at our most vulnerable.
I know we are all grown adults here, but those situations are the worst of the worst in making us feel scared and worried and frantic .
And then, to make matters worse, we lose our cool. And in an instant we then get to add embarrassment and shame at having acted in a way so unlike ourselves.
I think I’ve done it once. Many here have to. Or you read many stories here where others successfully bite their tongue in front of those smug doctors And instead break down at home.
Those moments for me are some of the hardest of this whole disease experience.
Forget and forgive yourself and move on!
Also - I am thrilled you’ve found a way forward so quickly. Many wait years and years.
Thank you so much once again FallingInReverse ! I’ve only found a path forward so fast due the kindness of complete strangers taking the time to give me the facts and point me in the right direction. And for that I have my dear mum to thank for as she was the one who urged me to try and find a support community 💕
Hoping my story/post and all you wonderful people responding will help others who may be struggling too.
I’ll ditch the multivitamin. And I’ll start researching the best brands to buy for d3, b12, folate and ferritin. If anyone has any good recommendations I would appreciate them. Thank you in advance! 🙏❤️
Vitamin D - for dosing, a calculator many of us have used with much success:
grassrootshealth.net/projec...
Remember to also take 100 mcgs vitamin K (mk-7) with it which directs the D to your bones and away from your soft tissues where it can calcify. Also D is fat soluble so eating it with something with fat aids in absorption (although I don’t always.)
|
This is my favorite B post ever - covering B12 and also folate as part of a good B complex (NOT to be confused with folic acid)
healthunlocked.com/thyroidu...
In my case (for my daughter) I chose so do the BetterYou B12 1200 ius a day for a couple weeks then added the Thorne Basic B complex starting at twice a week. I’ve kept her on the B12 spray but I think some people just continue long term with the b complex. But the above link has such great info on the kinds of B to look for, the ones to avoid, and how much others take.
|
For ferritin - this is a very tricky and nuanced endeavor… the product I and many here love is Three Arrows heme iron. Terrible looking website, absolutely incredible product. Some here say there is a discount code (FRANKLIN) I think? If you aren’t vegetarian it’s superior for many reasons. If you decide to supplement iron, feel free to start a new post or tag me and I can take a moment to give shared experience and advice there.
Never supplement iron without an iron panel and a commitment to test regularly especially at the start.
|
Remember I’m in the US, so have no experience on how or if you can get any of these tested or prescribed on the NHS.
Dear FallingInReverse , Jazzw , CyclingMummy and all other lovely people who responded to my post.
Update: my thyroid specialist had a cancellation and so I was able to meet with them on Wednesday for my first consultation.
We have a plan in place. I know 25 levothyroxine is a very low dose, but we are going to stay there for 2 months and then run thyroid function blood tests to see where we are at. This will include the missing thyroid globulin antibody test, so we can confirm whether I actually do have Hashimoto’s. The goal is to get my TSH below 2, but they also wanted me to look into LDN (low dose naltrexone), which they could also prescribe to treat the underlying autoimmune disorder causing the attack on my thyroid. We will talk more about these options at our next appointment in December. They also recommend a DAO supplement which I could try when eating histamine heavy foods, which would help with any itch triggered by these foods. I’ve ordered to give it a go, as I’m curious if this could actually bring me some relief in the short term, as well as provide some stronger evidence pointing to food triggers to my itch. I’ve also started a b12 spray alongside a b complex and a d with k spray also.
It’s only been a week so far on 25 levothyroxine, but I’m already feeling some positive shifts. I have more energy and feeling less depressed. My partner says I seem more sparkly again. This may well be placebo effect, but I’ll take it whatever it is. The itch is still there, but noticed there’s less physical sign of it, I.e. the hives aren’t really coming up like they were. Still has me up a lot throughout the night… but early days and trying to remain patient. Everyone I have spoke to seems to be on the same page, that the return to health is going to be a marathon not a race!
Does anyone here have any thoughts on LDN? I was wondering how levothyroxine doses are effected after introducing this, as if the attack on my thyroid is lessened, then perhaps less levo would be required, or maybe none at all at some point in the future?
Thank you again ALL! 💕
The best news is you seem to have a lovely doctor!
Two months on 25 is a long time on a low dose, but having a plan and sticking to it is half the battle. Remember blood tests are not useful until you are 6 weeks in the same stable dose of Levo. Start a simple tracker with date/blood test results and date/dose changes (including vitamin changes) and date/symptoms and how you feel.
Start new posts over the next 8 weeks if you have any questions or want to know what’s normal or not.
As for LDN, it’s definitely a thing … but not the thing of first resort. Some people take it and find it helpful, it’s also one of those things that can stop working over time, but it’s not the most common route. Personally I’ve had it on my long list, and there are a few people on this board who I know use it, but in my personal opinion getting your free Ts up to optimal is your first priority... then try the more experimental things when you see what’s left. If you’re curious I’m the meantime, I would search “LDN” on this board and read some older posts on it.
Hello FallingInReverse , Jazzw , CyclingMummy and everyone else who responded to my post…
I wanted to close the loop on this post by providing an update:
Since finding a thyroid specialist willing to treat me a month or so ago I also did receive an appointment with an NHS endocrinologist. I almost didn’t even bother going as I had lost all faith in the NHS, but I did go and it turned out that they were really sympathetic and supportive and have agreed to help me As I’m already getting quite a lot of relief from my itch on just 25 levo they wanted to keep me there for now but test in a month and if my TSH is still above 2 then they will increase to 50. Once they are happy with my thyroid levels then they will transfer me back to my GP with instructions to continue treatment with levo. I know it’s not all about TSH, and I have so much more to learn so that I can better advocate for myself moving forward. But it’s a positive start, and the improvement to my horrible itch alone has made a huge impact on my day to day life. I knew in my gut it was related! My endo said he has heard of others who had urticaria with their hypo and levo had made a difference where antihistamines had done nothing.
Hopefully my little story may give others hope that there are doctors out there willing to help, however hard it may seem trying to find them. Persistence is key so don’t give up and trust your gut!
Thank you all once again for all your support ❤️❤️❤️
Tears of joy for you! We so rarely hear of doctors who use their listening ears and actually, humbly, learn from their patients’ experiences.
Progress!
And yes, keep an eye in those free Ts and your symptoms as you will probably need a Levo increase at some point - but hey, we are all different indeed.
Congrats 🎉!
Hashimoto’s 
Hashimoto’s 
Hashimoto’s Disease
GP Incompetence - Hashimoto’s and Hypothyroidism treatment 
