Feeling like a fraud

[Justiina]

Had my ultrasound done, everything pretty much normal , radiologist said no sign of thyroiditis or sign of recent thyroiditis. He said the gland looks okish , almost normal size but I don't know which way , was a bit smaller or bigger.

Will see later on what he has written about it but that was what he said during the scan.

But I feel like fraud , like none of the tests show up anything clear, the ultrasound nor antibodies yet I had the hyper phase with obvious symptoms then hypo.

These are my blood tests from last week, not as bad I was sort of expecting based how rubbish I truly feel.

TSH 2.41 (0.5-3.7)

Ft4 12 (10.2-21)

Ft3 5.2 (3.5-6.5)

These are my previous tests from the spring to compare

??.02 2020/ 19.03 2020 /07.05 2020/18.05 2020

TSH 0.04 -><0.01 ->0.18 ->1.88 (0.5-3.8)

FT4 15 -> 20.8 -> 10.1-> 9.6 (10.2-21)

FT3 no test->8.7- > 4.7 -> 4.8 (3.5-6.5)

I feel rubbish I am so short of breath easily, stiff, gained few kilos, bloated exhausted and feel so done. It's like never ending saga where poop hits the fan repeatly , never feeling good. Never. On top of is that MS diagnose and if its cause of my symptoms I am done. Done and dusted. My life is just ridiculously boring never having energy to do anything. I always feel too nauseous or just completely exhausted to do anything I want to. It pisses me off that I would be capable to run around , no MS symptoms like that affecting my body. Yet I spend most of time watching effing netflix or reading. I am bored of it but what do you do if you feel too sick to do anything else.

I feel my thyroid can't be the cause but that's when my wellbeing went downhill fast forward when I started experiencing thyroid related symptoms which then ,way too late, was matching with labs.

I am not on ANY medication that could affect the lab results but I feel I should not feel this rubbish with that ok labs from last week.

My functional doctor will start trial of levo now that all bad stuff was ruled out on ultrasound but I can't shake off the feeling I am fraud and I ruined my life years ago thinking I have this mysterious health problem.

Ofc I am happy the ultrasound didn't show up anything bad, more to worry about but I just hope it would have shown something for peace of mind.

I just want to have a moment in my life when I can live a little and feel somewhat good and at the moment I don't believe in levo trial.

When it comes down to MS its bening and my neurologist says majority of my symptoms are more thyroid related as all symptoms changed when my hyper phase passed. Only fatigue can be connected to both.

In reality I have 0 trust I will ever feel good and thinking about feeling this rubbish for rest of my life is just upsetting, my head and mind gets bored, there is only certain amount of netflix you can do before it starts to bore you.

Then I start thinking oh well was I damaged by gadolinium contrast or was it vaccines I had to take (tetanus and pneumonia). But I had thyroid symptoms with hypo phase three years before those. I can't deal with this never ending questioning. It is just not what I ordered from the life not what I signed up for.

There is a huge difference between being alive and having that so called life. I am alive but not living.

[Hillwoman]

Justiina, you're not a fraud! You have MS, and however 'benign' to a neurologist, the effects may feel anything but benign to the patient. It is also an autoimmune disease, of course, and it can cause intense fatigue.

So that's one thing. But whichever way you slice it, your thyroid results look poor and are moving in the wrong direction. You may have 'antibody-negative' Hashimoto's, but I don't know a great deal about this - perhaps look at Izabella Wentz's website.

What really strikes me with the low-ish TSH and low Frees is the possibility of central hypothyroidism, caused by a problem with the pituitary. The pituitary can be damaged relatively easily by whiplash injury, blows to the head, etc. Non-malignant pituitary adenoma is also relatively common.

[Justiina in reply to Hillwoman]

Yeah the fatigue is the only common thing now as all other symptoms completely changed when my hyper phase passed. But the fatigue itself isn't the worst thing it's the physical sick feeling which neurologist doesn't recognize as MS symptom because there is no brain fog, I can feel perky mindwise up to do something but doing something is difficult feeling so sort of breath , burning muscles and just yucky, I don't have normal sleepy fatigue, well occasionally do but that's actually very very rare since starting B12 injections.

Pituitary was normal on brain MRI when my MS was diagnosed and my functional doctor says TSH slightly sluggish but in his eyes it is not that bad ,but in the end it's irrelevant because the symptoms would be pretty much same and as I had clear hyper with classic hyper symptoms he wanted to know why, on hypo end the treatment would be quite same no matter which one it is, central or normal hypothyroidism.

But to me it's bad nothing ever is definite. If this is nothing but MS then that's it. I would start to seek statements to get euthanasia which would take years but I am not having this. Last summer I went hiking, on November some xcountry and then almost over night hyper and never felt right since only short period right after the hyper passed which is when I probably had ideal thyroid numbers.

[Hillwoman in reply to Justiina]

Hang in there, Justiina. Start taking the levo and give it time to work. Keep coming back to the forum for support and advice, because it may not be a completely straightforward process. Hold on to the thought that with thyroid hormone replacement there is every chance you will feel better again and be able to do more.

Be kind to yourself. Sending (((hugs))). xx

[Justiina in reply to Hillwoman]

Thanks. The fatigue I can deal with, I could deal with being in the wheelchair because of MS, that's not the issue but this constant sick feeling is disheartening. My functional doctor is convinced thyroid medication will work for most symptoms and we can stabilize the situation so I can go back to somewhat normal life and that I can take.

I have a plan with my neurologist how I continue and they are encouraging me to be as physically active as possible because these days they know exercise is good for MS. I already eat very healthy and they agree if we could find the trigger we could put down the MS fire for long time. Mine isn't active but we could postpone the next relapse with meds, habits and removing the trigger. I am 41 and that's why my MS is considered not as worrying as for someone younger they say that usually MS acting out at this age isn't that bad and possibly never will be if we do the right moves. Thats why the thyroid thing causes me anxiety , I can't do my best for my health when I am feeling so sick. I want to, I so much want to but can't.

[Hillwoman in reply to Justiina]

I understand what it's like to have so many barriers in the way of improvement and the possibility of returning to a more active life. Sometimes you feel you'll never accomplish even the most basic tasks again.

I don't know whether you will be able to return to all your former activities, but your health will improve if you treat your thyroid, and you will do at least some of the things you love again.

I'll keep my fingers crossed for you that the levo helps. And if it doesn't, then adding in T3 at a later date could make all the difference. But that's for the future...One step at a time. 🤞 xx

[tattybogle]

(((hug)))

You are not a fraud!

Fraudsters know they are fraudsters.

You know you want to feel better than this, and you know you don't.

You are being 'helped' to feel like a fraud, probably because you don't feel like Doctors are taking what you are experiencing seriously.

Even if you had no other conditions, the pattern of your thyroid test results over time shows a clear rise of TSH and a reduction in FT4/FT3. A healthy thyroid doesn't do this.

Individuals results vary a lot from person to person. BUT the same person usually varies very little from their own 'set point' over the course of their life.

You are allowed to feel as pissed off with what you are experiencing as you feel right now.

Do NoT give this thought of being a fraud any space in your mind.

If you let it grow there it will do you harm,as sure as eggs is eggs.

I've felt like that for too many years..... it will just leave you unwilling to talk to anyone at all about anything.

But then i found my way here.... and now i don't shut up !

[Justiina in reply to tattybogle]

Thanks, that helped a lot. Thats what I have been thinking, my values vary too much as I have learned like you said for normal person it isn't that much all over the place.

And yes I have been told numerous of times I am just seeking attention, looking for magic pill instead working out. And I can't understand why they say that when I have always enjoyed physical activity , never been couch potato because I know you can get fit without exercise, can't become an athlete without training.

My functional doctor does believe me but the wound doesn't heal over night as you know.

[tattybogle in reply to Justiina]

Well for what it's worth . i believe you too...... lazy people don't do x-country in November !!!

Take the Levo trial , make sure you are dosed properly. Give it 6 months.

I'm damn sure you will be out on a hill again for New Years Day.

[Justiina in reply to tattybogle]

Thanks. That's exactly what my functional doctor said ,I will back on track next winter 😄 He fortunately understand things and is capable to trial all thyroid medication if one isn't working/suitable. He just wanted to be absolutely sure there is no toxic nodules or anything like that growing in my thyroid.

[greygoose]

I can't shake off the feeling I am fraud and I ruined my life years ago thinking I have this mysterious health problem.

You mustn't feel like that. Why would you think you had a health problem if you didn't? That doesn't make sense. 20% of Hashis sufferers never have raised antibodies. The antibodies are not the disease, just a marker of it. These people are diagnosed by ultrasound. But, the ultrasound won't pick up on it until some damage has been done. So, it won't show up in the early stages.

But, symptoms, on the other hand, can make themselves felt long before abnormalities show up in blood tests. So, if you feel there's something wrong, they you're more than likely right. Don't allow yourself to be gaslighted. It's your body and you know what it feels like to be you. No doctor can ever know that.

[Justiina in reply to greygoose]

Yeah I know I am not the only one but hate being one of those to whom this happens. And yeah I feel the changes pretty well as most, I assume. I knew the hyper symptoms can't be anything else as well as I knew exactly when it started to pass. But it was just so obvious with all text book symptoms yet I was dismissed.

Will see what the radiologist will actually write about the scan as it was such a quick glance because nothing super bad was there. He also said they see super bad glands but patient is not having any thyroid problems and very healthy looking glands with very hypo patients.

[greygoose in reply to Justiina]

You were probably dismissed because the doctors you saw knew less about thyroid than you do!

[Justiina in reply to greygoose]

True. And they would have completely missed the hyper in labs if I didn't do it privately.

I said I have diarrhoea , sweating high heart rate and very sore and weak muscles which they explained by everything else.

By the time my local hospital got me tested was when my ft4 dropped below the range which they would have considered normal based on TSH at that moment 5 months after the worst period symptomwise.

My childhood friend who is an eye surgeon in university hospital said straightforward that it sounds like they wanted to avoid my testing and doctors appointment hoping it had passed and they don't have to treat it. And to be honest that's how I feel like too, they did not lift a finger until I delivered the private labs.

[greygoose in reply to Justiina]

Well, that's it, isn't it. They're totally out of their depth, and they know it, so they'll do anything to avoid testing for, diagnosing and treating thyroid. And, they don't even know that it's not something that just goes away! As has been said so many times: it's pathetic!

[Justiina in reply to greygoose]

Yeah, ongoing debate about thyroid issues and T3 has worsened the situation in most hospitals. More people are complaining

about getting dismissed because endos wanted to deny any other doctor diagnosing thyroid issues.

Most private endos who are ridiculously expensive had empty schedule for those who complain about thyroid issue , you know loads of 20 minute appt that are suitable for thyroid patients , take a look at their labs and dismiss any abnormality unless the thyroid issue is very bad. Easy money. 20 minutes are not suitable for diabetics and they are treated in public healthcare anyway, any doctor can treat them.

Since endos stated only they can treat thyroid issues all private endos are booked for months and no referrals to endos in public healthcare. Smooth.

Naturally it was not the original cause of the feud but they used it for their benefit, endo department got more funding because suddenly it looks like endocrinology is needing more funding all endos busy busy.

Originally the feud is of course about the T3.

Btw head of endos in my district said I am euthyroid based on my labs without even seeing me. That easy it is. I wonder how they sleep at night. Probably well, they don't care that much.

[greygoose in reply to Justiina]

No, in my experience, they don't care at all!

[Zazbag in reply to greygoose]

What a wonderful reply.

[greygoose in reply to Zazbag]

Thank you.

[Hidden]

How about Ords thyroiditis? I have only found out about it recently. It is sinilar to Hashis, but your glands shrinks.

I don't think these fluctuating results are normal, flictuating like this.

[Justiina in reply to Hidden]

I think I have saw someone mentioning it here on some posting. Have to wait until they have put it on the paper to which end it was almost normal size.

[greygoose in reply to Justiina]

Ords is just Hashi's without the goitre. I've worked out that it's actually what I have. I had very, very high antibodies, but I've never had a goitre. And, the technician that scanned my thyroid just said 'well, it's very small', as if he was saying 'what are you complaining about?!?' Neither Hashi's nor Ord's has ever been mentioned to me, just that my antibodies were high, so it was autoimmune. But, reading about it, it has to be Ord's.

[NWA6 in reply to greygoose]

I’m another one for Ords! I bet there’s a large majority here it’s just that Hashi’s became popular. I’ve never had high antibodies or extrem low FT4 or extreme high tSH. So we come in all stapes and sizes. It’s almost as if we’re unique 😉

[greygoose in reply to NWA6]

One tends to call all autoimmune hypothyroidism Hashi's, it's just easier that way.

[Tythrop]

I too would like to know about Ord's disease.

I have an idea that OD is "end stage" Hashimoto when thyroid gland shrunk/Thyroid Atrophy.??

I also have an idea that the antibodies will be "very high in number" at the earlier stage of thyroid attack and at this stage the gland can become enlarged in early stage of H; But later on when thyroid beaten into submission as in end stage H /Ord's, the Thyroid gets smaller (shrivel)and the antibodies go down because the battle's over and won by the autoimmune activity...... Thyroid packed up.

I also also have an idea that at this late stage the Pituatory gives up sending out tsh as there is nothing there to communicate with /"downregulation" of tsh?.. So you get low T4, low T3 AND low Tsh.

I understand that this late stage (Ord's?) is a cross between secondary /central thyroid disease and primary. It's not true central because pituatory not faulty but it's got nothing to communicate with so HPT Feedback has a kind of blockage or interruption by not having any response from thyroid gland which is pretty much desd.???

NB: I'm DEFINATELY not saying I am right but this is what I think I have concluded from reading loads of stuff online... Its more interesting than Netflix.

[tattybogle in reply to Tythrop]

more interesting than netflix indeed....... I reckon i might have Ord's.

2nd pregnancy ...felt so awful from week one 24/7 that i swore i would rather die than be pregnant again. (Which i now think was my baby nicking all my T4)

Clear (with hindsight) 'Hyper phase' a few months after birth.

Slowly got slower and more foggy and leaden over next 4 yrs .

Then diagnosed autoimmune Hypo with 'in range' T4 ,slightly over range TSH (6.8) ,BUT TPOab's of >3000.

Never had any sign of anything in neck (although i cant say for certain there was nothing when i was hyper, b'cos i was a bit too busy! but i didn't notice anything at the time)

nobody has ever seen fit to so much as feel my thyroid gland , let alone give it a scan.

15 yrs later TPOab's were 194

4 yrs ago ,i stopped Levo for 10 days to see if my TSH would rise . It went from its usual 0.05 to 7.... so it does still 'work'

So what do i have?.... answers on a postcard please

[Justiina in reply to tattybogle]

You know I bet there are so many things not known about the thyroid there could be even more different conditions that are like Hashi or like Ords and still they would fit some other thyroid condition not fully understood.

Like for example in Iceland which is genetic bottleneck they have a thyroid issue not existing anywhere else in the world. It's a form of hypothyroidism caused by genetic mutation.

What if certain mutations or conditions protect from the destruction of thyroid gland in autoimmune diseases and some mutations worsen the destruction. Like the actual level of antibodies would be irrelevant to level of damage.

[Hillwoman in reply to Justiina]

I had no idea about the situation in Iceland, but what you say makes sense. I understand their society hasn't seen any significant immigration for centuries and there are only c. 300,000 inhabitants.

[NWA6 in reply to Hillwoman]

I’m 7% Scandinavia does that count? 😂

[Hillwoman in reply to NWA6]

I wouldn't know, but I would think the genetic pools of mainland Scandinavians and Icelanders must be have diverged quite a bit by now.

[Justiina in reply to Hillwoman]

I was reading a book about genetics generally and the thyroid thing caught my attention but when you think about it , it makes sense that it can happen. Well we Finnish too have some disease that doesn't exist anywhere else and we share very little with Europeans, way less they originally thought. Genetically finns could be considered their own race, not part of Europeans.

But that made me think , it's not fruitful to compare for example thyroid results between different nationalities because based on possibility of mutations it can actually falsify the statistics because of that.

I use simple example , for example genetically my normal TSH is 1.27. See very simple as it's an assumption that people who have this certain trait have similar TSH. Lets assume that it is Finnish gene. In comparison British people would have genetic mutation that would give TSH 1.11. Americans 1.3 and so on. Not a big difference , wouldn't change the bell's curve but yet it could be significant if it was absolute truth that certain gene in population determines ideal TSH. I mean these genetic variables between nations can cause difference between what we call autoimmune thyroid diseases and think as a one.

I am not saying this way it must be but it made me think that depending on certain conditions like being genetic bottleneck which Finland too has been could cause differences between different illnesses not just because of certain genes affecting the certain disease but all other genetic traits. And there could be similarities between not just areas but genetic build up ie Scandinavian thyroid , European thyroid, American thyroid and so on.

This is just speculation, I have no scientific back up but I wasn't trying to prove my thoughts true just to point out there could possibly more variables between nations that aren't yet understood because they haven't studied everything yet. Genetics is in baby shoes still.

[Hillwoman in reply to Justiina]

Very interesting thoughts Justiina, and I'm sure you've identified a genuine phenomenon here.

Perhaps your language is cultural evidence of relative genetic isolation, it being unrelated to the Germanic family of languages.

[Justiina in reply to Hillwoman]

Yeah well I only understand very little of genetics, but based on what I know it could be reality. I assume we will know more as they can do the whole exome and genome sequencing which offer far better view than just interpreting individual traits here and there. Still loads of work to do but as the technology has improved fast it gets easier.

I am fascinated about genes and I read guides for dummies to have some sort of view of them.

[Tythrop in reply to tattybogle]

What do you recommend on Netflix?

If you look at my overview-thing on this website you will see that we seem to have been on similar journeys. Mine didn't swell up but I was very very ill with sky high T4 T3 numbers.. "Thyrotoxicosis" /"thyroid storm" /"sub-accute thyroiditis" /"Post natal thyroiditis" .. Google them all and then add PubMed.

As you can see I've been putting the hours in

[NWA6 in reply to Tythrop]

No their just to variations of autoimmune thyroiditis. Hashi’s goitre, Ords no goitre.

I’ve never had excessive antibodies or high TSH or reallly low FT4 The highest my antibodies got was around 400. FT4 around 12 and TSH around 14. Nothing ‘alarming’ ever and yet my FT3 has always been just in range or a bit below.

[greygoose in reply to Tythrop]

No, I don't think that's true. Hashi's has a goitre and high antibodies (usually). I had high antibodies, but never ever had a goitre, or even a slight swelling.

The pituitary doesn't know if the thyroid responds or not. All it knows about is the level of thyroid hormones in the blood. It doesn't matter if the thyroid is dead or has been removed, or is still functioning, if the hormone levels in the blood are low, the TSH will rise. If they are satisfactory - and, remember that satisfactory for the pituitary doesn't automatically mean satisfactory for the rest of the body, because the pituitary gets served first, as it were - if the pituitary is satisfied, it will reduce TSH, whether there's a thyroid or not.

[BigBlueBear55]

Hi Justiina, I have both MS and Hashimoto's too and find it a massive struggle. A lot of symptoms can be applied to both conditions so it's not easy to manage. I refused gadolinium for my last scan because I worry it will make my thyroid worse. I am able to chat if you ever need to.🙂

[Justiina in reply to BigBlueBear55]

I have only had gadolinium once , so I might be over reacting but I have decided to refuse it in the future as it isn't necessary and based on studies can cause MS lol.

Yeah a lot of symptoms are naturally similar because thyroid, B12 deficiency and MS are almost identical to certain point. In each condition the problem lies on mitochondria level causing shortage of energy and each condition is de-myelinating. Also each condition can be irreversible, MS being the worst. And I feel like I won the wrong lottery having them all.

[BigBlueBear55 in reply to Justiina]

Yeah, we won the major booby prize but they do say that autoimmune diseases can cluster in some people. Did they tell you the MS was benign due to lack of active lesions or symptoms?

[Justiina in reply to BigBlueBear55]

Bening based on both. I had 6 non active lesions on my brain. I had optic neuritis which passed relatively fast, fully recovered and no visible damage, only those six non active lesions.

I have not had any other physical symptom and I passed all neurological examinations. And because my first relapse happened just before I turned 40 my neurologist said it's usually good prognosis.

And if mine is more reactive in the beginning they say we might be able to get me through this a bit easier , ofcourse they can't promise it but we can try. Problem is most medication isn't option for me because I have low leucosytes , they were below the range when I had my optic neuritis and keep remaining low. So they think it could have been reactive to unknown infection, I didn't feel sick at all not tired, no fever or anything but still they think its possible.

It's now been 38 months since my optic neuritis and no obvious relapse since so they keep their thumbs up because every month decrease the risk as you know. My neurologist and MS nurse have been generally upset how my thyroid has been ignored but also say rather hyper phase than MS relapse and as it has not triggered MS symptoms it's just good because my neurologist doesn't want to start the medication now because of corona , my leukocytes are already so low they fear it would supress my immune system even further and corona is big risk.

Only time will tell how it will go. I hope all my choices keep my system strong enough. I eat well , do mindfulness, I try to avoid stress , I try to be outdoors as much as possible , I try to keep my brain healthy. Fortunately I sleep well , no problem , mindwise I wake up fresh and I am not experiencing any pain.

At least I can say I try my best.

Funny thing is I actually don't have any other blood markers indicating autoimmunity so I keep thinking what's lurking inside me causing flare ups of this and that. Having all my amalgam fillings removed in two weeks , maybe there is some truth about them truly being a trigger.

I did have chronic yersinia enterocolitica, it is connected to neurologic diseases but not definite with MS, it's connected to thyroid issues as well. It has been poorly studied but recent studies suggest it's master at hiding and then get triggered again in certain conditions, released endotoxins cause autoimmune flare up because body tries to kill the bastard.

Will see.

[BigBlueBear55 in reply to Justiina]

Oh right I see, hopefully you won't have any more relapses and it was an isolated incident but don't feel like a fraud because the damage happened. Mine started in my twenties also after a viral infection but I didn't realise until I had a lesion that affected my spinal cord that the earlier problems were relapses . I am hoping to sort this shitty thyroid thing though but not as simple as I thought it would be.

[Justiina in reply to BigBlueBear55]

Yeah I was considered lucky one having first real episode at 40. You don't feel extremely lucky hearing you have MS 😄 But prognosis gave me hope that I still could have time to try my best to lessen the burden and minimize risk factors.

I think thyroid issue for MS is a bit worse than to otherwise healthy as T3 has re-myelinating abilities so wonky thyroid could speed up the destruction of myelin. Just my thoughts. I know they have tried to figure out how to make a drug from T3 for MS as not all MS patients have thyroid issues.

I hope you get your thyroid issues sorted out, it's disheartening how difficult it is and half of the difficulty is caused by stupid doctors!

[Justiina]

Yeah I try to convince myself it's not all about labtests but I feel like fraud complaining about hypo symptoms with okish labs. I somehow think it is possible for others but not for me.

I think it is just emotional fatigue trying to keep my head together while this rollercoaster. I mean the obvious hyper phase was very scary and adjusting with it took some effort swinging somewhat hypoish changed symptoms and had to readjust fast.

Fortunately this forum helps and it's comforting to read different stories to realize the truth is far more complicated than reference ranges.

[Justiina]

Thats interesting and it could actually be something like that for many people depending on cause. Like my family comes from a goitrous belt area which was unique in Finland, cows ate goitogrenic plants leading to iodine deficiency in certain belt shaped area. It could have altered certain genes as that's how the genes work in certain conditons.

Like MTFHR, it's still a bit questionable is it favorable or not. Certain trait was either selected to protect from too much folate or adding folate protected the fetuses with that trait and the natural selection sort of failed as fetuses with this trait should not have survived. That could be so with other traits too and it's impossible to be sure yet , genes were altered during certain conditions as the selection doesn't have human intelligence to predict conditions can dramatically change --> adding iodine.

[Justiina]

I felt bestest between the hyper and hypo where my values have obviously still been on top of range. And I felt rubbish three years ago when I had hypo phase last time, my TSH was only slight elevated highest 3.6 , but my ft4 was on lowest end of range and ft3 ~5 ,similar situation so it's more likely I am far off of my biological set point and for me the ideal is top of range where someone else feels normal in the middle of the range.

Yeah I have read your story and it's interesting!