Hashimoto’s and chronic spontaneous urticaria s... - Thyroid UK

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Hashimoto’s and chronic spontaneous urticaria simultaneously?

PugMama78 profile image
51 Replies

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.

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Jazzw profile image
Jazzw

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.

PugMama78 profile image
PugMama78 in reply toJazzw

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!

Jazzw profile image
Jazzw in reply toPugMama78

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?

PugMama78 profile image
PugMama78 in reply toJazzw

Hey Jazzw, I just attached my latest results to my reply to FallingInReverse - thank you for your support!

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!

PugMama78 profile image
PugMama78 in reply toFallingInReverse

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

Lab results from last Thursday
FallingInReverse profile image
FallingInReverse in reply toPugMama78

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?

PugMama78 profile image
PugMama78 in reply toFallingInReverse

My last thyroid function test October 1st results:

Tft results October 1st
FallingInReverse profile image
FallingInReverse in reply toPugMama78

Elevated TPO…. Do you have the number for that line item?

PugMama78 profile image
PugMama78 in reply toFallingInReverse

Yes, it’s 280.

TPO results
PugMama78 profile image
PugMama78 in reply toFallingInReverse

this was my results in July.

Tft July
PugMama78 profile image
PugMama78 in reply toFallingInReverse

Ferritin

Ferritin
PugMama78 profile image
PugMama78 in reply toFallingInReverse

B12 from June

B12 from june
PugMama78 profile image
PugMama78 in reply toFallingInReverse

folate from June

Folate from June
PugMama78 profile image
PugMama78 in reply toFallingInReverse

TTG IGA Antibodies

TTG IGA Antibodies
Jazzw profile image
Jazzw in reply toPugMama78

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.

PugMama78 profile image
PugMama78 in reply toJazzw

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.

ABs

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!

Tsh
PugMama78 profile image
PugMama78 in reply toFallingInReverse

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.

PugMama78 profile image
PugMama78 in reply toFallingInReverse

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!

FallingInReverse profile image
FallingInReverse in reply toPugMama78

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 : (

PugMama78 profile image
PugMama78 in reply toFallingInReverse

Which line did you read wrong… around the celiac?

PugMama78 profile image
PugMama78 in reply toFallingInReverse

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.

PugMama78 profile image
PugMama78 in reply toFallingInReverse

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.

radd profile image
radd

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.

PugMama78 profile image
PugMama78 in reply toradd

Thank you radd , I’m going to look for this book right away! Willing to do whatever it takes to get back to a more normal existence, and realize education is key at this point. Thank you for pointing me in the direction of this valuable resource 💕

CyclingMummy profile image
CyclingMummy

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.

PugMama78 profile image
PugMama78

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.

thyreoidea profile image
thyreoidea

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

PugMama78 profile image
PugMama78 in reply tothyreoidea

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. ❤️

FallingInReverse profile image
FallingInReverse in reply tothyreoidea

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.

Sh4rn4mo profile image
Sh4rn4mo

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

PugMama78 profile image
PugMama78 in reply toSh4rn4mo

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. ❤️

Agitator23 profile image
Agitator23

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.

PugMama78 profile image
PugMama78 in reply toAgitator23

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 ❤️

Ruby1 profile image
Ruby1

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.

PugMama78 profile image
PugMama78 in reply toRuby1

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! ❤️

Ruby1 profile image
Ruby1 in reply toPugMama78

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'

FallingInReverse profile image
FallingInReverse

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!

PugMama78 profile image
PugMama78 in reply toFallingInReverse

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 ❤️

humanbean profile image
humanbean

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.

humanbean profile image
humanbean

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...

Wua13262348 profile image
Wua13262348

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.

PugMama78 profile image
PugMama78

 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 💕

Jazzw profile image
Jazzw in reply toPugMama78

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. 😢

PugMama78 profile image
PugMama78 in reply toJazzw

Jazzw let’s catch up more when I’ve recovered from this setback… thanks for the kind support! Hugs 🤗❤️

Jazzw profile image
Jazzw in reply toPugMama78

Hugs to you too xxx

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