hi guys! I kind of want to ask for other people's experiences. Long story so I apologise.
I was diagnosed with Hashimoto's in April this year, I had positive TPO antibodies and had an ultrasound scan done due to having a goitre, and the report said it matched hashimotos thyroiditis. At this point the only symptoms I had was fatigue, which was getting worst, weight gain (around 20kg in 2/3 months), cold sensitivity, headaches and nausea. I was given 75mcg to take once daily in the morning. My results at the time showed my TSH was around 14 at the time, and my T4 was 11.7 pmol/L (10.8-25.5).
I noticed I was getting new symptoms, and some were getting worst. I was sleeping around 16 hours a day, and still having horrible fatigue. I started developing neuropathic pain,cramping type of pain, joint pain with sometimes mild swelling, dry retching, skin itchiness, a red rash in my cheeks, blurred vision at times (which the neurophtamologist reports my nerve isn't normal), dizziness and and fainting, dry eyes, and many more symptoms .
I saw an endocrinologist who said he doesn't think all these symptoms are from the thyroid since I started getting some of those the year before, and was tested for thyroid and was normal at the time. I also had pericarditis the year before which the cardiologist thought was autoimmune in nature, after ruling out infections and things. My esr and crp are always high, around 20 to 50 for both. He said he thinks there is another autoimmune that came at the same time and is causing the symptoms.
fast forward a couple of months and MRI brain done which was clear,neuro seen which cleared and other specialities, they all said they think it's rheumatology related. I got an appointment but it was 6 months away, so I went to see the consultant I was supposed to see on the nhs privately. He thinks it's undeferenciated connective tissue disorder and gave me steroids, prednisolone. O.m.g. it changed my life, all my symptoms went away, even ones I didn't realise I had cause they creeped in so slowly, I even lost weight! My rheumathology antibodies came back negative, which he told me it was likely cause they think years to come back as positive,and my Ana was weakly positive. I am now waiting for my nhs appt, but the steroids course stopped and all my symptoms came back very suddenly.
While I am waiting for the appt, I feel so lost. Why do I have to have 2 autoimmune together. Is that common? Has anyone else experienced this? Do you have any advice? I feel so lost. TIA 😊
ps: my folate, D3 and B12 came back low and I am taking supplements. The B12 has come back high now, at 2000, oops.and the D3 is 101 and folate 15.5 now.
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hi! Thank you for the reply. I am still on 75mcg since my tsh now in always around 1, my last one being 1.05. My T4 I belive was around 18, but I am not sure. I know it was around 3/4 through the range.
my weight at the moment I'd around 95kg. Unfortunately I amfinding incredibly hard to lose weight 😞
I am taking a green package, wockhardt, but they swap between that one and from merycurypharma.
My B12 went from 150 to 2000 since March. My folate also increased around 5 or 6 times. My d3 is now above 100, it was 33 in March. I am taking at the moment D3, folate, I stopped the b12 because of how high it was. I am taking magnesium, probiotics for my gastro problems, Curcumin and Coq10. These last 4 I've started taking recently to see if it helps with the symptoms and inflammation.
what is the 4th vitamin I need to check please?
my coeliac blood test was negative. I became lactose intolerant. Went from drinking 2L of milk a week plus yogurts and cheese to not being able to take anything at all or I get extremely bloated.
I also found like I struggle to breathe and my temperature is sometimes 37.8. Its normally between 37.2 to 37.8. I find it really hard because I am constantly feeling like I'm burning up and cold. Is that something normal for hashimoto's?
I am also finding my goitre seems to be getting bigger? Is that normal?
Only 5% of Hashimoto’s patients test positive for coeliac, but a further 80% find gluten free diet helps, often significantly or is absolutely essential
Guidelines on dose levothyroxine by weight is approx 1.6mcg per kilo of your weight per day
Some people need slightly more a few need slightly less
95 x 1.6 = 152
your current weight of 95kg suggests it’s highly likely you need dose increase in levothyroxine
Request increase to 100mcg daily and retest in 6-8 weeks
likely to need further increase in levothyroxine after next test
My GP hasn't been keen on the Ft3. The endocrinologist also said he doesn't do it because it isn't an accurate picture of what's happening inside, and it's really rare people can't covert Ft4to Ft3. I thought it is weird since I have heard people that need to take both. I'll try again, any advice on how to approach that?
I found taking my levo at night helps, since when I used to take in the morning, I always started to feel rotten in the morning. When I take it before bed, at least I feel better in the morning. Should I skip the evening dose before the blood tests?
I had no clue about the tablets. Will try and get lactose free ones.
my ferritin was 25 in March, but now it is 53ug/L (13-150).
I'm going to give it a go since I've noticed I'm starting to get bloated, and nauseous again.
is it possible that I felt like my levo didn't last the whole 24 hours because it was a low dosage?
so was last test done early morning and you had taken levothyroxine at bedtime night before
That would give false high Ft4 result….
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before 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
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
I had 48 hours on a lactose Levo (Accord) and had dreadful bloating. Going lactose free with your Levo might help. Can’t believe such a tiny tablet can cause so much fuss. I seem to be one of the few ok on Teva, I’ve not been able to source the others locally. 🦋💚🦋
That explain why I'm always bloated. I was started to think some of the dairy free products had dairy, but it didn't make sense. I get extremely bloated all of a sudden. Maybe it is the tablets. Will ask the GP for lactose free ones. Thank you!
I’ve had to drop the lactose free products too, the Asda and Waitrose lactose free yoghurts didn’t work for me, the area cheese was delicious but gave me pains, accidental hollandaise sauce out for lunch made my mouth feel funny for a couple of hours. I’ve had to double down on all things dairy. Some of the coconut yoghurts don’t suit me either, maize starch seems to give me a reaction too. Someone confirmed coconut collab yogurt is a common offender. It’s a right faff but nice not to be popping and gurgling 🤣 🦋💚🦋
I get you, it's trial and error with a lot of brands. I had one of the desert pots from the coconut collab and within minutes my tummy started to get distended. And I was so shocked, I literally went through my head what I had eaten that meal, and the only new thing was the pots so I had to assume it was that. Never had it again. Didn't know it actually caused it to more people. I feel like these illnesses come with so many intolerances, that it is funny when my GP comments on my weight, cause I can't even eat half of the crap I want because my tummy gets so big that I struggle to breathe. I just keep trying and learning until I get a perfect diet that doesn't give me all of these symptoms 🤞
Oh yes, unfortunately it is very common to have several autoimmune conditions at the same time.
Once you get one it invites all of its friends to come and join the party. I started with Graves’ disease then a couple of years later developed inflammatory arthritis. At that point I decided to go totally gluten free. Back then I used to cater for people who were coeliac so it was quite easy - I also joined CoeliacUK and got their amazing ‘bible’ which listed practically every ingredient known to man and loads of commercially made products. It’s worth it’s weight in gold.
I didn’t ever ask my doctor to test me for coeliac - sensible people do but basically the end result is the same - don’t eat gluten but it’s probably not the best way to do things. I wouldn’t want to go back to eating gluten to find out either.
My CRP is always low now and my thyroid antibody levels which were very high have absolutely plummeted which I like to see. It could be that it was a coincidence and they would have fallen anyway but who knows. Since going GF I’ve found that my IBS has improved massively.
So to answer your questions I think from what I’ve read on various sites on HU multiple autoimmune conditions are not unheard of.
Try not to feel lost, join ThyroidUK, read as much as you can about your condition and come on here and people will support you.
Hi! Thank you so much for your reply! I've gone dairy free, and it helped a lot with the bloating, nausea and constipation. I tried gluten free last year and it didn't help much, but will try again. Tbh I don't have a lot of gluten, the only thing I usually have is my wholemeal bread, which I'll have to change to gluten free.
I'll try and see if I can download that book.
Hopefully it will happen to me too, since I feel a lot of symptoms is due to chronic inflammation.
I am just scared that if I have 2, I will get a lot more. And I feel helpless in stopping that from happening since no one can tell me how I got mine in the first place. I truly believe mine wad due to stress, so I am trying to work on that.
thank you for replying, it makes me feel a little bit less alone and frightened 🙂
Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
The red rash on your face is sometimes a sign of Lupus, was it what they call a butterfly rash, covering your nose and cheeks. I've been through all the autoimmune checks as I have Fibromyalgia and a couple of years ago started getting very dry eyes and difficulty focusing and my GP tested me for Sjogrens, another AI disease as my ANA was speckled.
Further testing proved it wasn't however. Unfortunately one AI disease can mean you can be prone to getting others. The fact that the steroids helped, which suppress your immune system and stop it over reacting, suggests there's definitely something going on for you. Fingers crossed you get diagnosed soon.
I don't have the typical butterfly rash, as my nose isn't palways affected and it isn't as red as the typical ones. But it is enough that my skin is starting to feel different due to constant inflammation.
Most people with Sjogrens won't have a positive antibody blood test. So I would ask for a referral if I were you. If your ANA is positive, there is a high chance that you have it. With rheumathology diseases it is very hard to diagnose since there is a high percentage of people with negative antibodies. Sometimes ultrasound of the joints, biopsies of the skin or LPs is necessary for diagnosis.
I hope you feel better, and if you still are getting symptoms try and get a referral.
I'm glad it all went away. Mine hasn't gone away yet, and it makes them so itchy because they are so dry! Did they give you steroids before diagnosing with fibromyalgia? If yes, did they help you? Thanks!
No Fibro isn't deemed an autoimmune illness, more a dysfunction of the central nervous system. Although it comes under the Rheumatology umbrella. I've taken steroids when my asthma has flared up but not for Fibro.
There's no black and white definitive test for Fibro, it's a diagnosis of exclusion really, ie we've ruled out everything else lol. Some think it's linked with low thyroid hormones but being on thyroid replacement hasn't made my Fibro disappear, sadly.
Hi! I'm asking cause my private rheumatologist gave me the steroids, and when they made me feel netter, he said that it is positive news because there is more treatment available since I worked well with steroids. I thought they did that to everyone, before they say if it is fibro or not, as a form of exclusion. I have a lot of pain with this, and I think he gave me the steroids as a test to see if it works. I just wanted to check if they do that with other people or if he did because of the symptoms I had.
I didn't know about the theory associating it with thyroid hormones. That's quite interesting. Unfortunately, there isn't a lot of research available on it. I know people say that a lot of times the pain killers don't properly help. I hope you're well managed with your fibro! 🙂
For me the fatigue was always worse than the pain, mine's due to poor sleep, another very common Fibro symptom. Scientists don't know if the poor sleep causes the fatigue, pain, stiffness and brain fog of Fibro or whether the Fibro disrupts the Central Nervous System and causes the symptoms. It's the old chicken and egg. According to one paper I read the CNS of Fibro patients becomes hypersensitive and hyperactive, it never really switches off and this overdrive causes the brain to interpret signals wrongly.
So pain where there isn't pain, pins and needles and other sensations like IBS and headache. I don't take anything for Fibro now. I pretty much tried all the usual suspects but found the benefits very minimal and the side effects horrible 😒.
I found healthy eating, weight loss and regular exercise far better than any tablet. And pacing yourself is important, but that goes for most chronic illnesses to be fair.
I have really bad fatigue, to the point where I sleep 16 hours a day. I usually sleep quite well though. I also get pins and needles, headaches and ibs symptoms. But I also get like mild swelling of some joints at times,and a bunch more things. Tbh I feel like fibro symptoms overlap with a bunch of autoimmune, so I always wondered if it isn't a mild manifestation of it. But then steroids don't help it, and usually when it is autoimmune steroids help. From what I've seen, there is also the problem thst a lot of doctors dismiss it which it sucks, cause it means it's not taken as seriously as it should. When you do blood tests is your inflammatory markers raised? Your crp and esr? I'm glad the diet and exercise helps. I am planning to start swimming because at the moment with the joint pain and muscle weakness I don't think I can do much else 😫
ESR has been raised on occasion but not by much. Its a fairly non specific test anyway, it just tells you there's inflammation but not where or why. Fibro isn't an inflammatory disease in the way Lupus is. There's no damage to joints or tendons, although it can hurt like hell. It's basically central nervous sensitisation, in the way migraine is another. Basically it gives false signals to the brain telling it you've got pain or pins and needles or stiffness etc. You actually haven't in all likelihood.
Unfortunately until they find a way to dampen or better still shut off the false messages we're left with Fibro drugs that merely can help manage the symptoms. As I said I've tried all of them, antidepressants, antiepileptics, painkillers but found none of particularly helpful. But that's just me. I'm very med sensitive and some get on well with the Fibro medications and find they really help.
Oh okay, yeah my esr and crp are chronically raised. That must be so bad, I'm so sorry. Do you find doctors ti be dismissive or have you found a good team? I assume you're managed by rheumatology?I have heard a few people say the same, that they don't get along with the medication very well. Tbh they are all hard-core and give so many side effects. I hope you find something that works well for you.
I'm not managed by anyone but myself these days. I was diagnosed by Rheumatologist, but then he sent me back to GP. I quit all my Fibro meds about 6 years ago, including the slow release morphine I was taking. And I felt so much better. And yes I've had good and bad doctors. My Rheumatologist was excellent, but some of the GP's much less so. Their answer to anything is its anxiety, depression or menopause. I now avoid mentioning the fact I have Fibro when discussing a new problem as I've found it a very convenient label for lazy or disinterested medics to pin everything onto.
I accept Fibro can have a wide range of symptoms, as do thyroid disorders, but its not responsible for everything. As I said don't be put off by my experiences of Fibro meds. I'm extremely sensitive to medications unfortunately. Many people do well on them and they can give good control of symptoms.
It's a case of trial and error. I just never found any that I could tolerate. For me the medications were worse than the symptoms I was trying to control.
I'm sorry the meds didn't work. I get that, there is quite a lot of ignorance with illnesses like fibro, so people will blame everything on it. I hope you find a medication or even a lifestyle combination that makes your illness better. 🙂
tI'm so sorry to hear that. Did they all come around the same time or quite further apart? I hope they are all under control! Thank you for replying, and I hope you and your family are all okay 🙂
I have Hashimoto’s. It was number three or four in my expanding collection of autoimmune issues. With hindsight, I have a feeling it may all date back to my adolescence when I was off school for3 months with glandular fever. I don’t think back then it was ever referred to As Epstein-Barr virus, but since then I’ve lost count of the number of inexplicable/“untreatable” problems I’ve developed.
With my pericarditis they tested me for a number of viruses, and it showed I had EBV in the past. When I look back, I remember going to the GP when I was a teen due to hair loss, tiredness and more. But nothing came out of it, and it got better so I let it go. With me I also feel like I was under a lot of stress at work, so I think that was the trigger to make it worst. Did all of them came around the same time? I am scared I am still going to get more if I am honest. I'm changing my diet, but without treatment I can't exercise usually. My job is enough to tire me. I don't know what else to do to try and prevent other ones from coming, even though, I am aware that in medicine we don't know how to prevent them, since we don't know the cause. Thank you for reaching out! 😊
I was fine after the EBV, for probably 15 years, although on reflection I did get a couple of weird things like my face would swell up for a few days once a year usually around Easter (just weird) but I started to suffer during my first pregnancy with severe itching which just went on and on for ever, but moved around my body. I went to several dermatologists and got no real concrete outcome other than the agreement that it was almost certainly autoimmune. Then I got palmoplantar pustulosis, which is NOT lovely…and finally, the cherry on top, Hashimoto’s.
I have honestly reached the point where, knowing there’s nothing I can do, I don’t really worry. I’m fortunate compared to others, as my autoimmune collection is only rarely truly debilitating or problematic, and I’ve learned to live with the discomfort.
I’m gluten, dairy and soy free and have been for the last two and a half years. It’s certainly helped with my Hashimoto’s weight gain, and possibly some of the other Hashi’s symptoms too, but I can’t say it’s made a huge difference to my other autoimmune problems, and I haven’t yet found anything that does, sadly. I regret to say that I think long term you just have to grit your teeth and decide not to let it all get you down or run your life. Sorry I can’t give more positive news, but that’s been my experience, and, as I said, I’m fortunate in that many others have experienced much worse.
I have been having odd symptoms every so often for a few years now, but nothing like at the moment. I have that at the moment, my skin is so itchy that I scratch until I bleed. GP gave me anti histamines, I am on two types, max dose a day. They also gave me thos cream to use as body wash. But I still get itchy. My GP just apologises and says they don't know what to do, and must be related to all the other symptoms. My cheeks are also getting almost scar tissue, when you have inflammation over and over again, but they just apologise and say they don't know what to do. My face went from super oily to super dry. I am expecting at one point for them to refer me to dermatology but they don't, and I know the waiting lists are crazy so don't want to bother them if not needed. Did you ever managed to get control of the itchiness?I am so sorry. That sounds so painful. I hope it is well controlled.
I am already dairy and soy free. And have just gone shopping and bought gluten free stuff. I hope it helps with weight control, because I feel helpess.
I feel so hopeless, I am just terrified. I feel like it is because its been less than a year. But last year, it attacked me pericardium, I am just scared it will decide to attack another organ, and I get damage.
It helps to know that I am not alone, and people are still living their lives and being happy, so thank you!
I totally empathise, and I’m sorry you feel so worried. I saw a dermatologist a couple of times privately as I still back then had insurance through work. It was frustrating because I’d have flares of the itching, so bad I’d be sitting on the edge of the bed at night scratching my legs with a hairbrush, and I didn’t wear skirts for years! Yet until the last occasion I saw the dermatologist, my appointments always coincided with a period when my symptoms would go away. My final appointment on that occasion coincided with a flare so she saw how bad it was. She said “oh, I’ve seen you before, seven years ago” and I replied “yes, and you told me then that it would probably get better on its own….and here we are!”.
I tried again recently to get some sort of treatment ( currently,the flares are on my scalp) and was told by the Dermatologist very dismissively that I have eczema (which I don’t), so now I just grin and bear it. It’s not ideal, but loads of people are suffering from much worse than me. I know it’s all incurable, it’s just disappointing that there aren’t more effective treatments.
I find that very hard. I feel like in the NHS they are amazing with acute problems, but they can suck with chronic problems. They can be incredibly dismissive, and you have to be almost lucky to get a good doctor that will listen to you and treat you. I hope you find someone like that, because the itching can drive anyone crazy. 🙂
I can confirm that with chronic, difficult to treat cases the NHS sucks bigly. Sorry but that's been my experience. If they can't cure you or manage your symptoms then they don't want to know. And there are plenty on this thyroid board who will agree with me. If you're really lucky they'll tell you're your menopausal or depressed to boot. The problem is you, not them.
Totally agree. Ironically, in the past 12 months, I’ve twice been referred to hospital for tests, the first time for dizziness and balance problems, the second because I was concerned I might have angina. I had everything from MRI scan, X-rays, ear tests, blood tests for everything imaginable…and all in a very short timescale and in considerable detail. Yet it took me 5 years and paying for my own blood tests to convince my GP I had a thyroid issue (which I knew because my mum also had hypo). In the latter case, I couldn’t even convince my GP to ask for tests beyond TSH… and yet, when I turned up with my own set of test results (and this I found hilarious) they said “Oh, we can’t accept your results , but we will send you to have all the tests done again” Yes,the same tests they’d consistently refused to do!
It was the same for me, I had dizziness, almost fainting, balance problems and my GP booked me an MRI brain, had it done in less than 1 week. Have been asking my GP with help for the other symptoms and they just apologise and say I need to wait for the rheumatologist appt, which is only at the end of November. I find it comes from a place of ignorance, not of bad intent. What they are familiar with, and understand they give priority. When they don't have a lot of knowledge they just apologise and tell you to wait months for. I don't think they understand that those illnesses can have really bad consequences. It sucks, it depends on luck, if the person I see is familiar with the disease or not.
Yeah, I've noticed that. Wheb I had the pericarditis they were quite useful and quick. But since I've got these problems I've been waiting for months to see a specialist. It doesn't make sense. The endo I saw, also told me that they don't deal with Hashimoto's usually, unless there are complications, which I thought it was ludicrous.
Well doctors think that if you have hypothyroid then just taking Levothyroxine each day will make all your symptoms vanish just like that. And hypo is nearly always dealt with by GP's. Badly I might add, in many cases. Endos will only see the tricky cases. And to be frank most Endos are diabetes specialists and know very little about thyroid. So even if you do see one there's no guarantee you'll get any better treatment.
It does make you feel like you're on your own a lot of the time. But boards like these are invaluable for helping us and educating us to get better. I've always advocated reading up on your own conditions and being knowledgeable about them. You can't rely on doctors unfortunately.
I agree 100%. Like my goitre keeps getting bigger, and I am thinking surely there must be something going on with the thyroid for it to keep getting bigger but they still don't refer me to endo. And when I saw the endo in the past, he basically told me stuff that went against what I read, that the Ft3 bloods aren't accurate and the medication won't help anyway. And he told me that the GP can't diagnose me with Hashimoto's just with the ultrasound scan and the antibodies test, and I was so confused thinking then what else will they have to do to diagnose me? I am so glad I found this website, it has been a mood booster and a source of knowledge. So so thankful to all of you!
Well I hope you stick around and always feel free to vent lol. I've only been a member for just over a year but the members have helped me so much and I'm sure they'll help you too 😁
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