hey everyone! so i’ve been living with a bunch of awful symptoms for years (as long as i can remember) and i still have no diagnosis !! about 3 years ago i went for blood tests, convinced it was a thyroid problem, but they all came back normal (my TSH was about 4). weirdly, i have conflicting symptoms that don’t fit into either hypo or hyperthyroidism, but are very much typical thyroid symptoms. because of the confliction/confusion (e.g, always too hot and cold, not one or the either), i haven’t really given it much thought since. however, my recent bloods show a slight increase in TSH (5.2) and my T4 is on the low side of normal (12.7). i’ve also had CRP (inflammatory marker) readings of over 10 consistently since 2020 (10, 12, 13 and 14), which no one seems concerned about. in the past few months, i’ve convinced myself i’ve got PoTS, especially given the temperature issues involved in Dysautonomia and the associations with vitamin deficiencies (was b12 deficient for a long time, now on supplements but don’t feel any better). after my recent blood test, i’ve been looking into Hashimoto’s more than i have before, and it seems to make a lot of sense. it’d make sense to me if i had both, as the temp symptoms of PoTS would throw off what would otherwise be clear symptoms of Hypothyroidism. i’ve read that it generally takes around 10 years to diagnose due to it not showing up in normal blood work, until it progresses to Hypothyroidism. on the nhs app, it says readings of 5-10 for TSH means they should request a thyroid antibodies test, and i have an appt to ask the doc for this next week. it’d be crazy if i was right all those years ago about it being related to my thyroid, but i’ll just have to wait and see. anyone else had a similar experience? am i overthinking it and my levels actually aren’t that significant?
EDIT: thank you all so much for sharing your experiences and helpful info! it’s very much appreciated <3
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I'd say your blood results were significant. You should get a diagnosis of hypothyroidism after 2 NHS TSH tests above the reference range so you are half way there.
Ask your GP to retest you in 3 months time. Book the blood test for 9am or as close to as possible as thats when TSH is highest. Do it fasting.
See if GP will test ferritin, folate, B12 & D3, also antibodies. When hypo we get low vitamin levels due to low stomach acid and poor vitamin absorption.
There is a link with POTS and hypothyroidism although it is unclear why that is.
thank you for your reply and reassurance that it’s significant! would they diagnose it even if my t4 is technically in the normal range? it looks like it’s heading towards out of range anyway so i’m sure they will diagnose eventually. the only thing with that though is apparently people don’t have symptoms at sub clinical level but i’ve had symptoms for yearsss? that’s what’s making me think it could be hashimoto’s but will just see what the test comes back as. i have got low folate and am b12 deficient, but i’m not feeling any different on supplements. i’ve read that there is sometimes a link too, doesn’t seem to be a lot of research into it but definitely interesting! hopefully i’ll get some explanations this year🤞
Here's where you start to learn that patients know best, and will all tell you that you will have many symptoms before you get diagnosed, sometimes for many years. Doctors are taught that hypothyroidism is easy to diagnose and treat yet they struggle to diagnose it and worse still once they do treat us, do not know how to make us well again.
The criteria is about TSH and not FT4. Two results above range in succession on the NHS for diagnosis.
Can you get copies of your blood results? Who told you to supplement? Did they test you for pernicious anaemia?
i’m quickly learning that already, i appreciate the info and support <3 that’s good to know, thank you! i’ll post them here now, my GP told me to start taking them and it is in the normal range now (around 500), but my folate is still low. she said my bloods showed i wasn’t anaemic but i had the same thought at the time! i’ve read that low b12 is linked with pots too so it is starting to make some sense, just need the professionals to agree lol
There's a Pernicious Anaemia group on HealthUnlocked if you have further questions. Before supplementing your GP should have tested you for PA. Now you have started to supplement orally you can't really test again for 3 months.
haha yeah i am vegetarian, she did a full blood count and i’m sure anaemia shows up there? i did have a look online at the time and it didn’t look like my results were consistent with it to be fair
I see that you already got a bunch of support from this wonderful community! I just quickly wanted to say (maybe someone else also mentioned this) that TSH can stay in range for a long time/forever, while all your symptoms are off the chart. I don't think my TSH has ever been out (of your UK) range (note: physicians use different ranges all over the world). My T3 has been out of range before treatment (I know take T3+T4 which skews the test results), but normally just a little bit. However, like you, my symptoms waivered for years (normal in the beginning). However, my antibodies were off the chart within 18 months of noticing odd symptoms (which was probably many months or years after having symptoms). So were my symptoms. My endo treated me (6 months before she wanted) based on my antibodies, my thyroid ultrasound, my constellation of symptoms, and the fact that I simply was not functioning in my job and life anymore (I literally begged for treatment). All my TSH, T4, T3 tests were fine/'just as fine as yours.' I know in the US (where I am) things are different, but I think in your case you may want to take some additional routes to get this fast-tracked (e.g., ordering your own tests, asking your doctor to run tests earlier than the UK system wants, etc.). It sounds like whatever you have going on, has been going on for a while...
This is all just to indicate that how Hashimoto's presents is different in all of us (a disease with 'vague/general' symptoms), and symptoms change at the beginning of the disease (which can be confusing), the tests ordered are not always correct for a full picture or even indicative at all (TSH) of what is going on. Trust your body! It can help to keep a 'symptoms' diary - I would study mine before going to the endo (just a Google Calendar on my phone). It helped me to give more detailed information ('yes, I couldn't stay warm for 5 weeks in spring' vs. 'yes, I often feel cold' gives the endo a very different picture).
A lot of us learned to be our own advocates - as you can probably sense from the answers on this forum...
hey, thanks for your reply! that’s reassuring to know. it’s so difficult to because my symptoms are so general, they fit with thyroid problems but also Dysautonoma, CFS, Fibro, etc because many of them cross over. so if my results are in range, it’s hard to advocate because i actually don’t know if there’s other things causing them. luckily my docs are doing a lot of the tests i’m asking for (just takes a while), so don’t feel like it’s necessary at this point to pay private. i’ll definitely keep it in mind though because saying that, it’s been years and i still don’t know! but i think if i just keep coming back instead of giving up and not bothering i might actually get somewhere soon🤞
I understand it is hard to advocate for yourself. The doctors should be the one knowing all the symptoms for each disease, and what fits best. But as you can see on this forum, often the Hashimoto's patients know more about their disease than the physician they are seeing (not always though - many doctors actually do their homework). I would say - advocate for your symptoms and your overall health (not a specific disease).
So yes, if your doctor is putting in all the tests SlowDragon is advising you to get (SlowDragon always has the best advice on this forum regarding tests etc) you should be well on your way in figuring out if this is Hashimoto's (or perhaps Graves'), 'simply' hypothyroidism, or something else.
Although Fibro is technically not considered an AI disease anymore (as far I know - or maybe with the new fibro discoveries they still have to figure this out), many of us Hashimoto's patients probably have another known or unknown AI disease we are living with. I am pretty sure I have coeliac disease as well. I can't test for it, because I went GF many years ago to relieve my Hashi's symptoms... after which other GI symptoms I had lived with for 25+ years also disappeared...
What also helped me a bit is really digging into my family's history. My family holds a lot of secrets and apparently one of those is that I am not the only one with thyroid issues. In fact, many of us have AI diseases. This deeper family history gave my endo another perspective as well.
Regarding being a vegetarian (from another part of this thread): I had to give that up to relieve my symptoms. I am still not good at eating fish, but my brain knows I have to, and I trained my mind to assure me it is okay to choose my health over a fish/scoop of beef collagen protein powder or so. It wasn't fun, but it was worth it.
all great advice, thank you! i’m not aware of any thyroid issues in the family but i know my mom has endo and a bunch of random symptoms too that she ignores so it’s not beyond the realms of possibility that she does! i’m glad going GF helped you, i’ll definitely bear that in mind too. it’s weird because i’m fairly sure i had the same symptoms before i went vegetarian, it’s not something i’ll 100% rule out but definitely a down the line situ for me i think. thank you again!
Not a problem! The GF/coeliac thing was more to indicate that you may have two things going on at the same time, since this is not uncommon for people with AI problems. This may make your symptoms even more confusing/explain a bit why your symptoms are confusing... (and many of my Hashi's friends also have fibro).
The vegetarian stuff; indeed, the timeline absolutely matters. I had been a vegetarian for ~20 years by the time I got Hashimoto's - so I knew the Hashi's came later (not the 'being tired' part though - I was often tired as a 100% vegetarian, but never anemic, especially while at university as well). Although, being 'Hashi tired' is something completely different than being 'vegetarian tired' - I definitely knew something had changed.
Either way, good luck getting those test results! You'll be okay. Just one step at a time.
There will be plenty of knowledgeable people on here who will be very willing to help you with all things thyroid but in the interim I can tell you that you are not overthinking things and a TSH over 5 certainly means you have an underactive thyroid (antibodies should confirm if you have Hashimotos or not). As you are seeing your GP it would be good if you could get them to also test your vitamin levels ie ferritin, b12, folate and vitamin d as all are needed to be at optimum levels to help your thyroid (GP's aren't taught much about vitamins and will tell you that you are in range when in fact you could be at the very bottom of that range). Ideally you need to have your TSH. FT4 and FT3 levels tested but many GP's won't ask for all three and believe that they should medicate on the TSH level only which is not right. If you don't have any luck on that score you can always do a private test like a lot of people on this forum do and get them done by Monitor My Health which is an NHS laboratory based at Exeter Hospital.
If you haven't got your recent results to hand you should ask for copies from your receptionist when you visit there and possibly at the same time ask for a registration form so that you are able to view your tests results online in the future. When you are able to post your results together with ranges (they are the ones in brackets) members can then advise you far better. You mention Dysautonomia and possibly POTS which I believe at least two of our forum members have and I'm sure they will be along to help in any way that they can Jaydee1507 and Relentlessearch (tagging isn't working).
hey, thank you for your help and reassurance! luckily i can see my results on the app and have had my vitamins, TSH and free T4 tested along with a bunch of other stuff (no T3 or antibody test yet). i’ll post my results from 2020 and dec 2022 on here. i had more at the start of this month but for some reason i haven’t had any info on thyroid results which i’m going to chase up, getting the impression they forgot to test it though! i think my GP will be open to doing more tests though thankfully, so hopefully will get more answers soon🤞
undiagnosedlife responding to message - can see you are in capable hands here. Just coming in to third, fourth and fifth that YES it has likely been your thyroid all along… I was like you, 9 years of every psychiatric medication they could make without even so much as a TSH test. Don’t overestimate how useful GPs are and don’t underestimate the power of this forum 🙂 everyone here will support you x
thank you for your reply🥰 honestly as soon as i listed my many symptoms, the first thing the GP asked was ‘have you had anxiety or depression?’. like yes, but wouldn’t you if you felt like this and had no answers?? the amount of times they’ve put it down to mental health, i’m convinced it’s more than that but at the same time second guess myself constantly. it’s a nightmare place to be so i can empathise with your experience, i’m so sorry you went through that for 9 years. i’m grateful for all the help and support i’ve had here already❤️
exactly! It’s as if they think mental health problems live independently in the brain away from the body… like it’s not all connected. One word of caution - it is a marathon, not a sprint. Treatment can be a complicated road but you have already made great progress today i feel just by confirming the issue 🙂 sending love and support to you xx
precisely that!! it’s so illogical and frustrating. treatment will be a whole other process entirely, i’m starting titration for ADHD meds soon and i’m a bit worried cos i know it can be a long difficult process but also kinda exciting. i wouldn’t want to start 2 new meds at once unless completely necessary so will just see how things go. and thank you, i’m trying to not let myself believe it’s 100% been thyroid all along in case the antibodies test comes back normal/negative, though i do feel like things are making sense more now, especially with everyone’s support. sending love and support to you too, i hope things get easier for you🫶 xx
It’s maddening isn’t it! BTW, you don’t need antibodies to confirm it’s thyroid. After 9 years of very obvious hypothyroidism I was finally tested but ONLY because they were putting me on lithium (and you have to test thyroid if going on lithium as lithium attacks thyroid) and they discovered my TSH was 4.9, my antibodies were only slightly above range but a scan showed that I had long term damage to the gland. All of this is to explain that sometimes there won’t be antibodies because there is no healthy tissue left, you can also have something called sero-negative hashimoto’s where your antibodies don’t show up. You can also have hypothyroidism that isn’t caused by autoimmunity but some other issue. Don’t let antibodies be the defining factor, your TSH and most importantly your symptoms are enough to convince me you have a thyroid issue. X
There’s more than one type of hypothyroidism and they are not mutually exclusive. So if there was Hashimoto’s with some degree it pituitary or hypothalamus dysfunction this could mask the true extent of the condition. The autoimmune/Hashimoto’s hypothyroidism is termed primary as it occurs in the thyroid itself- when the problem lies in the pituitary it’s called secondary and in the hypothalamus it’s tertiary. Just to make things a bit more complicated these latter two forms are also called central hypothyroidism. You can Google or get a recommended book - there’s a list on the Thyroid UK Website. It’s good to know this stuff as pretty much guarantee most GPs don’t. I think there are some fairly concise explanations on NHS Guidelines and it’s always good to use their own reference material when in ‘discussions’ with GPs. 😉
With B12 below range more likely to get B12 injections initially, even if then go to daily B12 supplement
With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins)
once your serum B12 is over 500 (or Active B12 level has reached 70), you may be able to reduce the B12 separate supplement, but as vegetarian unlikely to be able to stop it
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
thank you for all the useful info!! very interesting to know that taking b12 before folate can be dangerous, i never knew that. i’ve been taking b12 supplements and it’s up to 500 now, haven’t been prescribed anything for low folate but i’ll look into B complex vits!!
sorry my bad! luckily i’ve been taking b12 for a bit and no folate yet so its not a problem but thank you for clarifying and i can’t believe the docs didn’t tell me that!
i know! after those tests she focussed on b12 and didn’t mention, then recently said ‘oh did you know you’re low on folate’ uhh no? then she sent over a diet advice document but i’m pretty sure i’m already eating a lot of the stuff, i’ll definitely start on those vits asap
she does know i’m vegetarian, she told me to try supplements then maybe injections in the future if they don’t help. i’m taking this, amazon.co.uk/Core-Strength-... , 4 sprays a day (around 1500 units), which has increased it from 192 to exactly 500.
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)
Thorne currently difficult to find at reasonable price, should be around £20
If you want to try a different brand in the meantime, one with virtually identical doses of the ingredients, and bioavailable too, then take a look at Vitablossom Liposomal B Complex. Amazon sometimes has it branded Vitablossom but it's also available there branded as Yipmai, it's the same supplement
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
In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12
yes my ferritin is fine (25), weirdly can’t see my vit D levels but i’m mostly likely deficient and have been in the past. not sure which blood test shows iron but i’ve had a full blood count which i think shows i don’t have anemia? tbh i’m more concerned about my CRP levels being consistently over 10 (14 most recently) for 3 years, which i’ve read indicates a potential inflammatory disorder, but GP doesn’t seem interested in that as it’s borderline.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes:
Males 16-60: 30-400 ug/L
Female's: 16-60: 30-150
Both >60: 30-650
The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘
Here’s absolutely excellent reply by @humanbean
on iron and ferritin panel test results for another member
amazing thank you so much for all this information!! i’ll take my time to read over it. do you know if vit deficiencies cause high TSH or the other way around? aka, might my results show i’m hypothyroid as a result of deficiencies or is it that hypothyroidism cause deficiencies? no worries if that’s not been established! just worth an ask
Once hypothyroidism develops, this frequently leads to low stomach acid, and results in poor nutrient absorption and low vitamin levels as direct result
Low vitamin levels tend to LOWER TSH, in effect hiding how hypothyroid you might be
Getting all four vitamins tested and improved to optimal levels is frequently the first step
If thyroid isn’t working well due to vitamin deficiencies then this will correct the problem
If thyroid is damaged and not working properly then TSH will rise and you can get diagnosed and started on levothyroxine
Hi, request the TPO antibodies test as that will confirm if it is Hashimotos. I have it and my antibodies are at 115 which is apparently 3 times over the reference range.
Mine go over the lab range which apparently is 1300 (gp surgery range 0 - 60)and try as I may never reduce despite being gluten free for 7 years. I feel like I'm being eaten alive!!!!
I know the feeling; I was only able to reduce from 'beyond what we can count' (>999) to 75% of 'what we can count.' However, I am not sure where I read this, but I recently read that unless your can reduce your antibodies to a very low level, it does not matter how high they are; you are still within the 'problem range' so to speak. I have 'given up' to try to reduce them - I just try to be happy with what I can do given my life at the moment (stressed graduate student). So - I am trying not to focus on the numbers anymore, just on how I feel and the little things that make me feel a bit better. There are lots of little things that can help!
Good that you have a positive attitude. I have now also given up on trying to get the numbers down. Hashimotos makes you feel unwell unfortunately but with so many other problems now, vax injured and peripheral neuropathy, those antibodies will have to take a hike. Take care x
Yes, most of us -if not all of us!- have a story like that. So you're not overthinking it and it is crazy indeed that you may have had thyroid issues all along. But unfortunately it happens all the time. Follow the advice from all these knowlegeable and experienced people on the forum. I continue to be impressed with how much everyone knows. I guess they'll have had to become experts on their own conditions as doctors (even endocrinologists) are often clueless. And I don't know how they can keep answering all our questions, but they do!
So I'm glad you found us. You'll find help here. Now, prepare to advocate for yourself at your doctor's.
very reassuring (and sad and frustrating) to know i’m not alone! been alternating between advocating for myself and giving up for years now. i’ve learnt recently that you have to do your own research and figure it out yourself because they just don’t care or listen otherwise! honestly been questioning myself so much, feel like i’m going crazy constantly googling stuff and getting to the point where i don’t know if there is actually anything wrong or if i’ve just got obsessed with my health (talk about medical gaslighting). thank you again for your reply, i appreciate all the support (emotional and informative support!)🥰
Yes, it's hard. Especially because the whole reason you're doing it, is because you're unwell. And it's harder to do this stuff, when you don't feel good.
Those thoughts you describe sound so familiar. Thanks for sharing them. It's nice to hear it's not just me! (I know by now it's not just me, but I still need to remind myself at times.)
Hi it seems to take doctors years to get us diagnosed with hypothyroidism. There seems to be problems with menopause having similar symptoms that's what happened to me anyway. Keep going to your doctor if you feel unwell keep having blood tests. You should be able to ask for a print out of results l do. They started me on levothyroxine when my TSH was 8 . They are still trying to help me it's a long journey finally I've got a referral to an endocrinologist so I'm hoping that will be beneficial. I tried HRT that made me terrible as soon as it kicked in rocketing my symptoms as it affected my levothyroxine. Good wishes on your journey. Is your thyroid gland enlarged at at all? (Mine is)
hey sorry i’m sure i replied earlier but it seems to have disappeared! i’m sorry it’s been a long rough process for you but glad you’ve got a referral and some thyroid meds now! i’m not sure if it is tbh, has yours been confirmed by tests or does it just feel enlarged? is yours autoimmune? thanks for your reply
Hi l have had a needle aspiration on my enlarged thyroid about 20 years ago which said watery fluid. Eas pretty much ok then.More recently last couple of years since menopause at 58 l have had an ultrasound on my thyroid gland which said about three nodules. I had raised TSH of 8 before starting levothyroxine and terrible symptoms which firstly were thought to be menopausal. I dont know about autoimmune as l think that's what hypothyroidism is anyway. I certainly have an auto immune thyroid problem. Good luck on your journey
sorry must have missed this! managed to grab an appt for later today, gonna request full blood count, full iron, further CRP tests, thyroid retest and antibodies (and need my cholesterol checked). doesn’t seem likely i have anemia though because my RBC is high, which is too much iron? i mean i know it’s not a single test but my heamoglobin/haemocrat is normal too i think but i’ll get it checked anyway!
As your mcv and mch are both low, this, combined with your high rbc and continuing elevated CRP, should flag up the need for these to be repeated. Further similar abnormal levels should indicate a need for a referral to haematology. Keep a record of these levels, and your others, with any corresponding change in symptoms. Not everything is thyroid-related, and I would want a comprehensive iron panel done to investigate what is going on here. Also, as others have said, B12 deficiency is on the increase as it is linked to restricted diets such as vegetarianism. Incidentally, many symptoms of hypothyroidism and hyperthyroidism are the same, which can cause some confusion. Not all overactive people are hot and skinny, not all those with hypothyroidism are cold with thinning hair! Hope you find some answers soon.
thank you! haven’t paid much attention to the abnormal blood count results because they don’t make sense to me and i can’t find meaning in those (as a layperson obviously) but you’re right, i definitely need them repeated! it’s much simpler for me to think it’s a thyroid issue when it could be other stuff messing with my thyroid levels! thank you
One abnormal result is often meaningless by itself. TSH can be raised due to infection or illness, for instance, as well as being an indication of hypothyroidism. Some tests can be skewed by illness or even something as simple as dehydration. This is why any test showing an abnormal result should be run again, in conjunction with any other relevant tests. Never panic until the bigger picture is known!
HiSorry to hear you have been having such problems. The range for TSH is quite wide (0.27 - 4.5) and they don't really know what's normal for you. Some people are ok at the top end some not. I have hypothyroidism.....when my TSH was 4.9 I was told this was within range' but I still felt awful. They gave me more thyroxin and this brought my reading down to 0.9. at the lower end of the range I feel good. I don't know about POTs etc but it could be argued that the TSH is out if range, even if only just. You may feel better if your TSH was lower. Hope this helps good luck xx
hey, yeah i’ve felt like this for years even though it was still within range a few years ago, might be something else entirely for all i know though! but interesting to know it can affect how you feel even if it is ‘normal’ xx
Yeah, they were quite reluctant to do anything initially because it was within range but I feel so much better now it's at the bottom end of the scale. I do hope you get sorted soon. Xxx
Hi. It looks like you’ve already had lots of great advice given by other users. Just thought I’d throw my 2 cents in because I’ve been where you are. I experienced terrible hypothyroid symptoms for years. My GP would only run the basic thyroid tests that you’ve had. My TSH would persistently come back normal and in range. I was in my mid 20s and could barely get out of bed but my GP would not accept that I had thyroid symptoms. I had asked for thyroid antibodies to be tested but they refused due to my normal TSH result and instead tried to refer me to a psychiatrist because they said it must all be in my head. In the end I was very lucky to have a family member offer to pay for me to see a private doctor. They ran a huge panel of tests for all the vitamins other users have listed above, full iron panel and full thyroid panel including both TPO and TgAb antibodies. Although my TSH once again came back normal, it showed that I had Hashimotos Disease along with various vitamin deficiencies. I went back to my GP and brandished my results. They acknowledged my Hashimotos diagnosis with no apology, but even then they refused to treat me until my TSH becomes abnormal. So in the end I went back to the private doctor who was happy to prescribe medication and I’m pleased to say that a few years later, after lots of work on my vitamins and diet, I’m slowing starting to put my Hashimotos into remission and live a relatively normal life. However I have to get my blood tests and my medication done privately as my GP is not interested. My advice would be to get both thyroid antibodies tested, as you can be negative in one and positive in the other (it’s usual for GP’s to only test TPO). It’s also common for Hashimotos patients to be euthyroid - hence why doctors often overlook it. As others have said, you will have to advocate for yourself and even if you get a diagnosis, don’t assume you will get help or medication from your GP. Good luck and I hope you get answers!
hey, thank you for sharing your experience! i’m sorry you’ve had such an awful experience and that you’ve had to go private, but happy to hear you got some answers and treatment in the end. i’m having a similar experience really, i’m early 20s and can barely get out of bed, ache like a 90 year old (etc, etc you know how it is) and i’ve basically just been told they can’t do too many tests in case i develop health anxiety ?! hashimoto’s seems like one of those illnesses where because the standard tests come back normal, it looks like it’s in your head until they do the right one. my symptoms are very real but it’s hard to not question your own sanity sometimes with how dismissive doctors can be. i’m lucky that my GP is going to run the antibody test because my TSH is out of range now, but they’re still ignoring other abnormal results, and it’s only because i’ve done the research and requested it. i’m glad you were able to go private, god knows how long you would’ve had to suffer by the sounds of your GP!
Hi undiagnosedlife, my name is Brenda and I live in the US. I’m 66 now and have had Hashimoto’s Hypothyroidism for many years now but it took forever back in my 20’s to be diagnosed with Hypothyroidism even though I had every single symptom. But because my bloodwork kept coming back ok the doctors thought it was in my mind. Back then you didn’t get referred to a specialist unless your primary doctor had evidence of a problem dealing with that specialty. Thankfully my doctor finally sent me to an endocrinologist and as soon as he saw me he new I had Hypothyroidism. He could tell that I had a large gorter without even having to do any test. But it wasn’t until I was in my early 50’s after having to have the left side of my thyroid removed that I found out I had Hashimoto’s. When I went to my surgeon for my followup he said “I’m sure you know you have Hashimoto’s”? I was like “No, no body ever told me that”! In fact at that time I had never even heard of Hashimoto’s and I definitely didn’t know what it was. I researched it when I got home and it made so much sense because I had all the symptoms and had been having them since my very early 20’s. In my case the blood test lied. I wish you all the best!
hi Brenda, wow i’m sorry you had to live with these symptoms for so many years without knowing! that must have been really difficult. it’s mad to think you only found out because you needed thyroid surgery. i’m glad you finally have an answer that makes sense, i hope you’re able to manage the symptoms now you know? thank you for sharing your story with me and i wish you all the best too🥰
🙏 THANK - YOU SO MUCH FOR THIS & I WAS CLEARLY MEANT TO FIND & READ THIS , I DO NOT BELIEVE IN COINCIDENCES ... IT IS CURRENTLY ALMOST 6AM & I HAVE BEEN WAITING FOR MY SON TO GET IN SO I COULD GET TO BED AS I HAVE MY BLOODS TODAY TO CHECK MY THYROID YET AGAIN & I HAVE HAD ABOUT 20YRS OF THE SAME CONVINCED MY THYROID IS NOT RIGHT FOLLOWING A MYSTERIOUS WEIGHT AGAIN OF 7 &. 1 / 2 STONE ( 103LBS ) IN MY FIRST PREGNANCY THAT I GAINED IN THE LAST 7MTHS & ACTUALLY IT WAS PROBABLY MORE BECAUSE I INITIALLY LOST WEIGHT IN MY FIRST & SECOND TRIMESTER ... NOW I WAS VIOLENTLY SICK THE WHOLE 9MTHS & COULDN'T KEEP A THING DOWN & STRUGGLED TO FIND ANYTHING I COULD JUST NIBBLE ON YET I GAINED MORE OR LESS MYSELF IN WEIGHT & IT WASN'T UNTIL AFTER BIRTH THAT I REALIZED JUST HOW MUCH I HAD GAINED & THAT IT WASN'T GOING ANYWHERE EITHER ... DOCTORS / MIDWIVES TOLD ME NOTHING & I WAS BASICALLY LEFT TO FEND FOR MYSELF & WAS LATER TOLD THAT I MUST HAVE HAD A HORMONE IMBALANCE , BUT THAT WAS IT NO HELP & ITS NOT UNTIL RECENTLY THAT I FOUND AFTER MUCH RESEARCH ON MY BEHALF , THAT IT CAN BE SORTED OUT & YOU CAN RESET YOUR METABOLISM , THOUGH I AM STILL NOT SURE WHAT'S ACTUALLY GOING ON ... TO BEGIN WITH AFTER MY POSTNATAL CHECKUP @ 6WKS I BEGAN FULL OF DETERMINATION TO LOSE THIS WEIGHT & I STARTED DRINKING 2 SLIM FAST SHAKES ( 21YRS AGO ) A DAY + ONE SMALL HEALTHY VEGE MEAL , I WAS ALSO BREASTFEEDING TOO & I BOUGHT FITNESS EQUIPMENT = A MANUAL TREADMILL , A LARGE STEP MACHINE WITH A HEART MONITOR ETC ... WOMENS WEIGHTS , A BALL LIKE A BIRTHING BALL , I FORGET THE NAME RIGHT NOW ITS AFTER 6AM & A POSTNATAL EXERCISES VIDEO TOO & I WAS WORKING OUT EVERYDAY FOR 30MINS THEN 1HR INCLUDING WARMING UP / STRETCHES / MY OLD BALLET EXERCISES / AEROBICS / DANCE FOLLOWED BY CARDIO & I WAS DOING SO WELL STICKING TO IT EVEN ENJOYING IT ALL , PLUS I WAS A SINGLE MUM WITH A NEWBORN EXPRESSING MY MILK AS MY DAUGHTER REFUSED TO FEED ( THERES NOT A THING I DIDNT TRY & BECAME VERY KNOWLEDGABLE & WAS PLANNING ON HELPING OTHER NEW MUMS IN THE AREA / NCT COUNSELLOR ) THEN I GOT WEIGHED A FEW MONTHS AFTER , AROUND 3 - 6MTHS LATER & WAS ABSOLUTELY HORRIFIED TO LEARN I HADN'T EVEN LOST 6LBS & I WAS SOON UPSET & DEFEATED THAT I UNFORTUNATELY GAVE UP ON MYSELF & IT WAS AN EXTREMELY DIFFICULT TIME , I HAD BEEN GOING OUT & ABOUT WITH MY DAUGHTER & WE WOULD GO PLACES SHOPPING WITH MY MUM , BUT I KNEW THAT PEOPLE WOULD BE LOOKING @ ME & JUDGING ME THINKING I MUST OBVIOUSLY EAT A LOT 🥺 THEN THE VERY PERSON ( MY EX FROM BEFORE MY DAUGHTERS USELESS FATHER ) I WAS TRYING TO AVOID ( I WAS A UK SIZE 8 THEN ) I BUMPED INTO IN A BUSY SHOP & AFTER SAYING HI WITHIN EARSHOT OF LOTS OF PEOPLE , SOME HE WAS TALKING WITH ... HE SAID ’ DO I KNOW YOU ... ??? ’ LETS JUST SAY MY ANXIETY WAS THROUGH THE ROOF BY THEN & AFTER 2 FURTHER CONFRONTATIONS WITH 2 OTHER EXES ( MOUTH WIDE OPEN GAWKING @ ME AS THEY SLOWLY LOOKED ME UP & DOWN IN DISBELIEF ) ONE SAID SOME PRETTY NASTY STUFF EVEN THOUGH HE HAD GAINED FAR MORE WEIGHT THAN ME IN THE PAST & I TREATED HIM NO DIFFERENTLY ... THAT WAS IT , MY BELIEF IN HOW I WOULD BE TREATED WAS SOLIDIFIED & I HAVE BEEN AGORAPHOBIC SINCE ... THAT WAS 21YRS AGO MY LIFE RUINED & MORE IMPORTANTLY MY DAUGHTER FOLLOWED BY MY SON 2YRS LATER MISSED OUT ON SO MUCH QUALITY TIME SPENT GOING OUT HAVING FUN WITH THEIR MUM & HOLIDAYS I DIDN'T GO ON WITH THEM ... IT BREAKS MY HEART & NOW I HAVE A 6MTH OLD GRANDDAUGHTER I AM NOT PREPARED TO JUST KEEP MERELY EXISTING & I AM FIGHTING BACK TO GET MY LIFE , MY CONFIDENCE & MY LOOKS BACK ... SO UNBEKNOWN TO ME THE LAST FEW LOTS OF BLOODS IVE HAD DONE ( SINCE JAN 2020 ) HAVE SHOWN MY THYROID IS SLIGHTLY UNDER ACTIVE , TODAY I HOPE IT STILL IS SO SOMETHING CAN BE DONE ABOUT IT ... I AM SICK OF ENDLESS SYMPTOMS OVER THE LAST 21YRS INCLUDING THE OUTSIDE HALF OF MY EYEBROW GOING BALD & I HAVE GONE FROM BEING SMALL ON MY TOP HALF & CURVY ON MY BOTTOM HALF ALL MY LIFE , TO HUGE ARMS AT THE TOPS , A LARGE STOMACH & WEIGHT / LIKE A BUMP BETWEEN MY NECK & SHOULDER BLADES , A KIND OF HUMP I GUESS YOU COULD SAY & A HUGE FACE , I KNOW THESE ARE SYMPTOMS OF AN ILLNESS I FORGET THE NAME OF & THE SUDDEN WEIGHT GAIN & IVE READ ABOUT CORTISOL , I ALSO HAVE SEVERE SLEEP APNEA & IT ALL LINKED - UP TOGETHER WHEN I RESEARCHED IT , NOW I AM NEWLY DIAGNOSED WITH DIABETES TYPE 2 ... LIKE YOU I KNOW THERE'S SOMETHING WRONG ITS JUST PROVING IT / GETTING THE TESTS DONE ... THANK YOU FOR WRITING ABOUT YOUR JOURNEY , I GUESS I SHOULD TRY SLEEPING NOW AS ITS ALMOST 7AM - I WILL LOOK INTO THE THINGS YOU MENTIONED 🙂
hey thanks for sharing your story! i’m so sorry to hear that, i’ve also gained a lot of weight in a short space of time and the effects it has on your mental health can just be soul destroying so i can completely empathise with your anxieties about what people are thinking about you. i wouldn’t say i’m agoraphobic but i definitely avoid going out since i’ve gained weight, my confidence is non existent. i’m in my early 20s and feeling like life is just passing me by and i’m going to regret not having fun but i just don’t have the energy to do anything!! it’s an awful feeling but i’m glad you’re feeling motivated to change what you can and start living, i hope your tests come back with what you’re hoping for and you can start to get some help (and some sleep hopefully!)❤️
Don’t take no for an answer. You have been treated appallingly, but you know it and the knowledge you are acquiring will give you the tools to self advocate. The forum ‘tooled me up’ and I got onto a therapeutic dose of levo. I’ve not got an overdrive any more (at present) but who knows I may get that back in time but I have had slow steady improvement all the way.
That longer history is significant. Doctors don’t look back far enough, you need to bring it to their attention. Being pushed into hypothyroidism during or after is a thing. It’s in the literature. If you have a picture of you before your health problems take it with you. It will be a powerful image especially when you explain what you have above.
If you read my bio and see posts I have done I did two on writing a report for doctor which I submitted a week before. I’ve posted images of them. I submitted a week before appointment and they were scanned in by reception- I did all my appointments by telecon, but sometimes there is power in looking the doctors straight in the eye.
hey guys, just a quick update. i got my blood tests back and it’s still a mystery! TSH is now in range, antibody tests are well in range, so thyroid is not the answer for me (not sure why they didn’t repeat t4 but i’m sure it’s fine if my TSH has gone down). my CRP is still high, MCH and MCV are still low which i found out are also linked to inflammation. it seems to me i have a mystery inflammatory condition, but we’ll see what happens. thank you all again for the info and support❤️
just a note about timing of TSH tests in case it hasn't been pointed out earlier:
have you taken into account what time of day these blood tests were taken ?
TSH has a circadian rhythm , ~
~ highest middle of the night/ very early am ... gradually falling to it's lowest everyday around 12-3pm then slowly rising again.
so eg . if the Dec test was a 9 am blood draw and eg. the latest test was a 2 pm blood draw , then in that instance the TSH might not have 'really' gone down at all .
Also not all cases of autoimmune hypothyroidism have over range TPOab ... most do , but some only have over range TGab ( which NHS don't test) .. and a very few people have been found to have autoimmune damage to their thyroid without ever finding either TPOab or TGab over range.
Since your TSH is still a bit higher than the majority of healthy people (who have TSH about 1 or 2 ish.. anything over 3.5 is always a bit 'suspect') , i wouldn't take your eye off the thyroid 'ball' just yet ... i would suggest you test it occasionally every 6 months or once a year to keep an eye on what its up to .. and always as close to 9 am as possible for consistency .
(p.s ~they often won't test fT4 if TSH is in range)
thank you! it makes sense now why they didn’t test t4. i’ve been told TSH is highest in the morning so they were both around the same time (9am), but i will keep an eye on it and consider whether to pay for the other antibody test!
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