Have I got it wrong, do I have Hashimoto's or a metabolic disorder or chronically stressed?

[Highland49]

Hi,

Have posted thyroid results previously.

Been short of breath for 18 months and last 4 months, feeling of suffocation. Feel constantly like I've been running for a bus, struggling to get full breath, muscles don't want to know and sensation in throat (lactic acid?) Since virus last month, now can't stand or walk for long. Not depressed as such, still enjoy family time and seeing friends and look forward to things. Trying to enjoy the moment.

Thyroid tests themselves show thyroid functioning ok which has been confirmed by consultant. Have TPO abs of 365 (>34 positive for autoimmune thyroiditis), other symptoms of dry skin, irritability, brain fog and losing eyelashes plus family history of under active thyroid. TSH at highest was 4.95. Was 3.86 beginning of last month. Also have raised inflammatory markers.

So much information on Thyroid UK site and here which states TPOs means Hashimoto's but dismissed by both consultant and GP.

Have been under a lot of stress in last 2 years (voluntary redundancy, redundancy, bereavement, probate, studying, dodgy builder).

Could symptoms be stress related, still Hashimoto's or a metabolic disorder that I've never heard of? Would genetic testing help?

If I was a highland cow, they would have put me down by now!

Thank you

[Highland49]

Thanks Hidden

My ferritin has risen to 71, folate over 24, b12 injections, vit d 63 but supplementing with d3 softgel and k2. Cholesterol was quite low and ecg and chest x ray all good.

The CEO of Thyroid UK said that NICE are reviewing tsh levels but like she said, it won't currently help me. I'm changing my name to reallyfedup49!

[greygoose]

Your ferritin is still rather low, at 71. But certainly could be low thyroid causing the breathing problems.

Doctors in the UK, for some reason, do not like the name Hashimoto's. They prefer to call it 'Autoimmune Thyroiditis'. They also try to avoid diagnosing it because they don't know anything about it - they're probably afraid you'll ask questions they can't answer! So, the fact that your doctor denied you had Hashi's means absolutely nothing.

A TSH of over 3 is hypo. And in lots of countries you'd be diagnosed and treated at three. The situation in the UK, where they like the TSH to reach 10 before they'll do anything, is ludicrous and scandalous! But, there's not much we can do about it, I'm afraid.

[Highland49 in reply to greygoose]

Yes interesting about no reference to Hashimoto's, even consultant would vere the conversation away from this term and as you know from my previous post, he wanted to BS about how the TSH is measured. My husband, half tongue in cheek, said I need to go to Germany and be diagnosed before we finally leave the EU!

Autoimmune thyroiditis was recorded on my blood results from Blue Horizons, so it's even avoided there. I wonder if they see it as more an American term even though of course it originated in Japan after the doctor who discovered it?

I spoke to my GP about my concern that my breathing will further decline and she assured me it wouldn't but if my metabolism has been affected to the degree that I'm not breathing correctly and my body refuses to get out of first gear, then who knows how bad it could get? She just talked about a condition called respiratory dysfunction that the chest clinic that I'm waiting on will treat by physio, wow woopydo 😕 As usual, they try and treat the symptom but don't investigate what could be causing it.

[greygoose in reply to Highland49]

Well, Hashimoto was Japanese, but he discovered the disease in Germany. That sounds odd! lol He was working in Germany when he made the discovery.

I love your doctor's certitude! I often wonder if they really believe all the stuff they come out with. Respiratory Dysfunction sounds like another made-up thing to fob people off. If I were you, I would try raising my ferritin, see if that helps. It could be caused by so many things, but I don't suppose she knows that!

[Highland49 in reply to greygoose]

That's interesting about Hashimoto.

I did wonder about the term, just seems to refer to duff breathing when they don't know the physiological cause. I even explained diplomatically that low thyroid hormones reduce the amount of oxygen consumed as both the muscles and nerves are not performing well. Then the metabolism is slowed down and the body struggles to dispel the increased lactic acid. I feel better researching why it's happening but she was so disinterested by it all.

I'm having liver for dinner tomorrow, it's lucky that I like it!

[greygoose in reply to Highland49]

That's nice. With bacon and onions?

They are disinterested because they just don't see it as life-threatening. Probably think we're just making a fuss about nothing.

[Highland49 in reply to greygoose]

But if they had to give up their jobs and volunteering due to it, they'd be kicking up a stink!

Just onions 😀

[greygoose in reply to Highland49]

Oh, certainly they would! But I don't think hypo doctors get any better treatment from their colleges than we do.

[JGBH in reply to Highland49]

Indeed they are useless! Can’t understand why they are called doctors when all they do is safe (for them) box ticking ! Have been despairing for so long ... meanwhile we patients suffer and our health keeps on deteriorating.

[Highland49 in reply to greygoose]

About 3 years ago, my ferritin was 13 which shocked me a bit after I got copies of all my old blood results. They neglected to tell me that my iron itself was also below range, even though they'd requested a full blood count after I visited with the old chestnut of "tired all the time/TATT".

[greygoose in reply to Highland49]

It's depressing, isn't it.

[Highland49 in reply to greygoose]

Yup!

[Hidden in reply to greygoose]

That's like making a cancer patient reach Stage 3 before allowing them treatment! Unbelievable that anyone can withold treatment like this.

[Highland49 in reply to Hidden]

Couldn't agree more. The treatment of b12 deficiency doesn't seem to be much better in this country either.

The consultant was more concerned that I could sue him if I became worse on thyroxine and be struck off than in treating me. He suggested I start HRT but I don't have the usual symptoms of hot flushes or night sweats. Have started it to prove to GP it's not menopause and waiting on chest clinic date but that is for people with COPD, asthma and anxiety.

Have booked into see another consultant next month who set up the London Endocrine Clinic so hoping he will actually do his job.

[Hidden in reply to Highland49]

HRT is not as innocuous as many docs think. I can't give advice on this but if it were me I'd think about why I'm taking them. Do I really need them or am I complying with the doc to not rock the boat? Just a thought. And I believe it could possibly add confusion to your thyroid issues which are not yet straighted out. At the very least for myself I would wait and talk to the consultant at the London Endocrine Clinic about the HRT question. And I doubt you will prove anything to him. Hard to put new thinking in a closed mind.

[Highland49 in reply to Hidden]

Hi Irina,

Sorry only just seen your reply. Initially the HRT made my breathing worse and I had palpitations for one day. The endo convinced my husband that was what I needed so he keeps saying, why don't you just believe him, he's medically trained, not you. My son is not much better. So at moment I am hoping to prove them wrong so have conceded to take it but only for 3 weeks until I see the new consultant. Not surprisingly, my breathing or lethargy hasn't helped and a friend yesterday noticed that I have a goitre. My husband's reply was "well the consultant checked your neck".

So mainly it's to tick it off the list but also to keep my husband happy. Far from good I know, he's not an ogre, just Mr Always Right. Thanks for your advice.

[Hidden in reply to Highland49]

I feel for you. Sometimes family is the most difficult to get on our side when we most need a medical advocate. Good luck and listen to your gut feelings. Take care xx irina

[Highland49 in reply to Hidden]

Thanks luv. I'm surprised that they are being like that as I've recently sorted out my b12 deficiency so I thought they'd have faith in my research and gut feeling on this too. Take care too xx

[JGBH in reply to Hidden]

This is the norm over here! You have to be practically dying before they act! Many people die prematurely.... Shameful and depressing plus one loses confidence in doctors abilities to do the very best for their patients.

[Highland49 in reply to JGBH]

I thought I'd be admitted after struggling to breathe last weekend but nothing was done other than being told to wait on chest clinic (where they can instruct me how to breathe properly!). Where do you live?

[JGBH in reply to Highland49]

I live in the UK where we have to wait for ever as you know! Nothing happens until people get so very ill... no understanding of what prevention means and how much cheaper it would be long term but also how it would benefit patients rather than waiting till they become too ill to be given help so that they can live as normal a life as possible.

[Hidden in reply to JGBH]

We are lucky that in the US we can get meds, treatments, labs, etc once the doctor orders or schedules them. The glitch is getting the doctor to order them Also Big Pharma has a chokehold on which meds are pushed.I nagged my PCP/GP for almost 2 years to check my Vit levels-D, B12, Folate, Ferritin, and t3. She refused, saying she didn't think they were necessary so my thyroid status drifted down so far til last month I got an appt with a new, wonderful endo. And my afib doc found him for me and set up a timely appt. Now on the right track-no thanks to my primary. She doesn't know it yet but I'm not going back to her. All she would ever check was my TSH and T4. I did get her to finally do a ferritin when my sleep doctor recommended it. It was very low normal and of course she said"It's fine-within normal limits". GRrrrrrr!. Also my VitD was so low (16) the new endo started weekly loading doses. Private labs still frequently want a doctor's order. This way they can be reimbursed by medicare and our insurance companies. We can pay out of pocket but the cost is high enough to discourage this. The labs know they will make much more by going the doctor-insurance company billing route. Same #$&%, different approach. Getting effective medical care, IMO, is difficult worldwide. Different countries just find different creative ways to put the screws to some of us-esp if our particular medical problem doesn't generate enough money or costs the government more money than they want to spend.

[JGBH in reply to Hidden]

Glad you’re finally getting the tests and treatment you need. Similar scenario in UK but we don’t have to pay unless we decide (often out of despair and feeling so ill) to go privately. The trouble is we are expected to wait and often unreasonable long times. It is worse. Good health is priceless but we often don’t realise until we lose it...

[Hidden in reply to JGBH]

I think if we took a pollwe would find many of us would give up any possession we had to feel better and be pain-free. I also believe many doctors, nurses, and other healthcare givers will never understand til they feel the same. Part of life's journey I guess!

[Highland49 in reply to Hidden]

At least in the UK, it's not so expensive for private tests. I appreciate that the NHS doesn't have the funds to do further testing but as JGBH is saying, it's so short sighted in that they could save money by treating earlier.

[Hidden in reply to Highland49]

In my opinion this is a common mistake most beaurocrats make. Maybe it's not really shortsightedness but just a way to line their pockets more easily. Sorry to be such a cynic!

[Highland49 in reply to Hidden]

They've got us over a barrel! My mum keeps moaning at me, saying "just accept what the consultant and GP have told you, they don't like patients who look up things on the Internet" but this is not acknowledging how rough I feel. It is very fortunate we have these health forums and the option to pay privately, otherwise so many of us would be doomed!!

I'm becoming very cynical too 😉

[Hidden in reply to Highland49]

Welcome to the club!😊

[JGBH in reply to Hidden]

Agree...

[Highland49]

Thanks Hidden

I was wondering about vitamin C. My symptoms weren't so bad before the virus, not great but certainly not this bad. I'm taking magnesium citrate at bedtime but will try the glycinate once I run out. Was also reading about glutamine earlier. Not known about MSM powder so will look on Amazon.

[Highland49]

That's brilliant , thanks for all that. A little bedtime reading.

[Clarrisa]

Hi, I was ill this past winter & am still dragging around too. The docs are calling my fatigue "multifactorial" (apparently fatigue is one of the more difficult diagnoses to figure out). Does multifactorial sound any better than dysfunction? It almost sounds like, your guess is as good as mine.

[Highland49 in reply to Clarrisa]

But I think yours has a posher I don't know what it is term!! Have you looked into your b12 level? The range in the UK is set so low that it is believed that so many people are being missed. Often being told you're in range is only part of the story and more people should be getting a print out of their results. Low vitamin D can also cause problems as it's the only vitamin to act in a similar way to hormones. The level to be optimum is 125 nmol/L in the UK.

The b12d charity symptom checker was a good starter for me. Sadly, after feeling a right old warrior in sorting my b12 problem myself, this thyroid/"respiratory dysfunction" is the one that's flooring me.

Hope you're feeling better soon.

[JGBH in reply to Clarrisa]

They often push patients into a dead end like CFS : chronic fatigue syndrome...... when they haven’t got a clue and are not bothered to make the effort to find the root cause of problems. They don’t want to spend the money either. Not brilliant...

[Highland49 in reply to JGBH]

And how many others are struggling? Seems to be that they ignore family history and symptoms and just prescribe on results which don't tell the whole picture. It so needs an overhaul.

I saw an out of hours last weekend after the HRT made my breathing problem worse and other than being told to wait for the chest clinic appointment, he mentioned CFS.

[Hidden in reply to Clarrisa]

Kind of like that ubiquitous word "VIRUS". All it really means is what you have can't be classified into a more specific category with a tried and true treatment. So we'll call your sx a virus that is going around and let treatment chips fall where they may. And sometimes we'll prescribe an antibiotic which may or may not help, might even cause side effects, and you'll think we are helping you!

[JGBH]

Of course CFS diagnosis (what a sad joke!) allows them to get rid of patients who present with difficult conditions so they tick the box, job done, get rid of patients. And they get handsomely paid for doing that. Was referred to a CFS clinic (different health problems from you) but I simply refused and told them what I thought of such clinics and what a waste or money it is .... Unfortunately I doubt we’ll be able to make them change their mindset..... they protect themselves and have no care for the patients.

Am waiting for a second knee replacement operation.... the pain is excruciating 24/7, can hardly walk, and I have autoimmune disorders but I’ll have to wait 5 months!!! They wouldn’t keep an animal waiting that long to relieve the pain and allow it to walk! The very caring best health system in the world ..... excuse me if I beg to differ.

[Highland49 in reply to JGBH]

This is it, they wouldn't allow an animal to suffer for that long. So hope you hear soon about your knee replacement. To not be mobile has such an impact of course on your wellbeing.

I'll dispute any CFS diagnosis. It's a bit like them referring me to the chest clinic, if I had COPD, asthma or anxiety, great I'm sure it would have been of great benefit but they seem to want to refer to then feel that they are doing something but fail to apply their medical training to think "family history, slow breathing, low energy, low temperature, low mood, everything slowed down = metabolic condition of some sort". I even explained to the last GP that isn't it worth considering that my slow breathing could be caused by the muscles and nerves being slowed down due to thyroid either not working so well or lack of thyroid hormones but she just referred me back to my TSH being in range and that I've already seen an endo so it can't be that.

I think that GPs now overly rely on blood results instead of thinking analytically. They disregarded my family history of under active thyroid and said that my symptoms were too vague. Well, something is causing me to struggle to breathe, feel like I'm suffocating and to gradually be losing my ability to walk any distance. Fortunately now that I'm off of the HRT, my walking has improved again but I'm nothing like the active person I was.

[JGBH in reply to Highland49]

It is rather scary to know GPs are unable and unwilling to do their job properly! They want an easy life. Not on call at night and no weekend work. Meanwhile we’re struggling.

I am constantly pushing and fighting to get somewhere. Have seen a few private consultants in despair to rule out certain conditions but many weren’t that helpful.

Keep on pushing until you get some help but I know how exhausting it can get when feeling so I’ll. Wishing you much luck.

[Highland49 in reply to JGBH]

Thanks JGBH. Wishing you much luck too. I wonder sometimes if the consultants know little more that the GPs.

Hopefully you have a lot of family support to keep you going.

[Hidden in reply to JGBH]

Off topic! Do you know the definition of a psychiatrist? A doctor who can't stand the sight of blood!

[Highland49 in reply to Hidden]

😄 I always like off topic 😉

[Hidden in reply to Highland49]

Me too. Esp when it's humor. Can't get thru life without a sense of humor!!🐱

[Highland49 in reply to Hidden]

😉😄

[Highland49]

Sadly my husband and my son are not much better about it all! In the very least, I always want to know "why" something is happening. I need to understand and from that can help to solve something myself instead of having to rely on these bloody doctors! Just such a shame and a pain that it's relatively easy to self treat a b12 deficiency but not so easy to treat possible under active thyroid without a diagnosis.

How's it going with your b12?