Thyroid patients suffering

[serenfach]

Not sure if this has article has been flagged before, but I found it interesting.

I was surprised that they estimate thyroid problems affect 1 in 20 and still we struggle to get any help.

abdn.ac.uk/news/17040/

[Buddy195 Administrator]

Thanks for sharing serenfach 🦋

[humanbean]

Some sections of the article just made me want to roll my eyes.

It found it takes an average of 4.5 years for a thyroid condition to be diagnosed, with this taking considerably longer for patients with hypothyroidism. In most cases (almost two thirds of respondents) it took multiple appointments and a worsening of the severity of symptoms before a diagnosis was made.

I usually see the time it takes for a diagnosis being quoted as about 7 years. In my case it took 23 years from the time I was first told my thyroid was "borderline underactive" to getting my first prescription for Levo. I'd already had symptoms I now associate with being hypothyroid for years before the condition was first mentioned to me. It is very difficult to say how long it took for me to be diagnosed because there is a lot of overlap for me in symptoms of iron deficiency and being hypothyroid.

The gender of health professionals also seems to matter, with patients saying they felt more involved and empowered when diagnosis was made by a female consultant.

This has never been a factor for me. Doctors have thought I was a drug-seeking, attention-seeking, hypochondriacal waste of space since I was a teenager, and that is true for both genders of doctor.

Improvements across aspects of labour market engagement such as employment prospects, career and skill development opportunities post-treatment were however much more limited. Only around 10% of respondents reported positive change whereas for the majority of people (approx 60%) there was no improvement, and for the remaining (approx 30%), things even got worse.

Given that I gave up work at 41 with thyroid problems undiagnosed, I struggled for years after that, and now I live on a very small pension, and still have to rely on my husband's income. My "labour market engagement" has been abysmal and almost every one I know has assumed for years that I am lazy.

“The evidence that emerges from this survey confirms that thyroid diseases have serious implications for the life of patients, with adverse and long-lasting consequences on their wellbeing and their ability to engage with and interact with social activities and work long after they get a diagnosis,” said Professor Alexandros Zangelidis.

From my point of view as a patient, many GPs seem to think of thyroid disease as being a minor thing and they appear to think that female patients exaggerate its effects. The main purpose of doctors appears to be to minimise the effects of thyroid disease, minimise the symptoms, minimise the doses of thyroid hormones they prescribe, minimise the patient's options, and they minimise testing too. I know the labs are often the ones who enforce this test minimisation, but presumably they do this on the basis of research carried out by endocrinologists.

“Relatively little evidence exists about the impact of thyroid dysfunctions on the wellbeing and labour market outcomes of those affected,” added Professor Catia Montagna. “This research makes it very clear that a more holistic approach is needed to inform relevant healthcare policy debates and initiatives.”

The "relatively little evidence about the impact of thyroid dysfunction" has come about because doctors don't recognise thyroid disease when they see it, and this is probably because symptoms are not considered to be important, only test results are.

[SmallBlueThing in reply to humanbean]

I've not yet read it, but Prof Montagna has co-authored Labour market implications of thyroid dysfunctions (cos docile worker units is what really matters, innit?):

aura.abdn.ac.uk/bitstream/h...

[BrynGlas in reply to humanbean]

I was diagnosed by a male GP. I had seen him a few times because I was feeling grotty. This was in 1998, so I would have been 43ish. I didn't know whether it was an early nmenopause or what it was. But it didn't take the GP long to diagnose me. A few months maybe, the Thyroid tests came out fine at first, but it wasn't long until I had another test which showed me as being Hypo.

That was it, I was diagnosed. But I never got back to normal again. . I wasn't gaining weight at first, I just felt grotty all the time. I started gaining weight and my body just didn't work right! Nothing worked properly any more. And I am sad to say that it never got back to normal again.

But it takes so long now to get diagnosed. We are mainly women who get Low thyroid. And a lot of the people I know who are low, are around menopause age.

Does that ring a bell with others? I went from a perfectly normal woman no weight issues at all to not recognising myself.

Is this something that is being investigated specifically?

I have no idea, but I won't hold my breath.

[SilverSavvy in reply to BrynGlas]

BrynGlas, I relate to your 'not recognising' yourself. This disease seems to steal away who we are piece by piece and (this wonderful forum aside) it's a lonely journey. Sending you my best wishes.

[humanbean in reply to BrynGlas]

That was it, I was diagnosed. But I never got back to normal again.

I can empathise and sympathise. My body has never worked well and treatment was so delayed that there is no chance now that I will ever feel "normal", although treatment did get rid of one problem I blame on being hypothyroid.

I had plantar fasciitis (self-diagnosed when I was in my early 50s) from before school age. It disappeared, for the first time ever, with thyroid hormone treatment.

But it takes so long now to get diagnosed. We are mainly women who get Low thyroid. And a lot of the people I know who are low, are around menopause age.

Does that ring a bell with others?

Definitely. Doctors took little notice of me and my health problems most of my life, but as I got older the lack of interest became even more noticeable.

[SmallBlueThing in reply to BrynGlas]

It was good that you didn't have a single test and sent on your way.

My first test, at age 39, was botched or lost and not repeated. I was hyperthyroid at the time, with hypertension and chest pain. GP assumed GERD (reflux) with minimal basis, prescribed Gaviscon (which I didn't take) and never followed up.

Five years later my TSH was 3.3 and I was suffering. It took another five years to get semi-regular testing, but still watching and waiting. My levels were alternating, but I received no explanation or support from my female GP, whom others considered "lovely, but ditzy", and I know other hypothyroid patients who transferred to other doctors. I can't think why I didn't do some "research" on my own behalf -- it was probably because I didn't have access to test results until a short time before treatment commenced. I do recall not being a regular user of GP services; not having regular opportunities to call in at the surgery to make an appointment; poor telephone access (they've only recently provided a ring back option).

End of life care for my mother triggered an intense flare, but I didn't see my GP for a couple of months, by which time things had calmed somewhat, however my fT3 was rising over subsequent tests, prompting a letter to make an appointment. I wasn't feeling too bad and had a seasonal peak of work to get through, and didn't visit the surgery for a further two years!

Since treatment commenced I've tried adding T3; using DTE alone; and for several years have used one grain of DTE along with levothyroxine. COVID-19 in early 2021 provoked a long period of thyrotoxicosis, with little monitoring, thanks to the vacutainer shortage. My stock of Thiroyd DTE was running short by March, so I had a private test, with both fT3 and fT4 back in range (they'd both been above range, when tested by the same lab, a year before). I went back to taking levothyroxine, alone, but by the time of my then-annual NHS test my TSH was still suppressed, and I agreed to reducing my dose. My pituitary now appears to have sorted itself out, and my TSH has risen to 4.3, but I don't have a GP appointment for several weeks. The surgery declares a staff shortage due to sickness, so sending a message asking if it's OK to increase my dose would just add to their workload. I could just do it and use the recommendation of TSH of 0.4 to 2.5 from GPnotebook as supporting evidence.

[birkie in reply to humanbean]

Hi Humanbean ❤️

My story of diagnosis is a horror story, I first became unwell in around 2014 symptoms consisted of sweating and a not to noticeable tremor in my hands, fatigue and irritable.

I was a this time a gym bunny, so it was effecting my training so off to my gp I went as my trainer noticed there was something wrong, gp saw me sweating I popped my hands out which had a slight shake, gp said "ho it's the menupause (I actually started going through the menupause in 2007 after a hysterectomy and never really suffered any symptoms) gp just told me it's just getting worse (menupause) so off I go as I couldn't take HRT due to clots thrombosis 😔.

I suffered over the next 6 months becoming worse off I go bk to gp.. Again.. It's the menupause, this continued for another year of me going back and forth to my gp then in around 2017 I'd lost quite a bit of weight (no diet) my tremor was now very noticeable (friends commenting on it) my son said "let's put your symptoms in to the NHS app" we did and it came up as an overactive thyroid, off I go back to the gp, this was now in early Jan 2018.

I explained I thought my symptoms were thyroid related... Gp... "NO they are not.. Your menupausal" its at this point I ask for bloods AGAIN.. His not best pleased but does them anyway... 2wks later still no call from my surgery on the bloods so I ring up to be told "all bloods are fine" 🤦‍♀️ now I'm very hyper but I get an appointment with another gp who agrees wholeheartedly with my gp there is nothing wrong with my thyroid and it's my menupausal state.

I try to cling on to my health, my son is now sure I either have cancer due to the weight loss or Parkinsons due to my now very noticeable tremors.

He urges me to go back to the doctor, I do unfortunately in my surgery at that time I always seemed to get this prat of a gp😔 I present all symptoms, the weight loss now is very noticeable, he congratulates me on the weight loss (I'm now underweight) and again says its the menupause, this was in around July 2018.

In sep I collapse going to the toilet, then I collapse again the next day, my sons had it he gets me an emergency appointment with my surgery, I see a completely different gp she'd only joined the practice 4 days ago but as soon as she saw me she diagnosed me on the spot hyperthyroidism bloods confirmed it the next day.

Unfortunately I was really ill and the anti thyroid drugs didn't work, I was rushed into hospital in thyroid storm and eventually lost my thyroid in May 2019 🤦‍♀️.

But my son got my records, we both looked over them and noticed a report from an endocrinologist which at the time in (2014) when I started to feel ill the gp did do some blood work.

I the report it was noted... "this lady has 2 short suppressed thyroid stimulating hormone, with episodes of thyroiditis this is possible subclinical hyperthyroidism) please can you do regular thyroid blood work ups because of her suppressed TSH and subclinical HYPERthyroidism"

Looking through my records he never followed upon the endos recommendations, and never told me anything of this report. 😠

I fully blame my gp for me loosing my thyroid and my faith in any gp and now endocrinologist, well some of them have gone right out the window. 😠

[SilverSavvy in reply to birkie]

Oh Birkie, I wish someone would gather all these horror stories together and throw them at the feet of the GMC. It simply cannot be allowed to continue. Big hug to you.

[arTistapple in reply to SilverSavvy]

I wonder how much it would cost to gather this information coherently. Obviously all this stuff appears on the forum throughout but even the bios can’t cover everything that’s important (job loss, marriages broken, utter vulnerability etc etc) AND things change/become clearer/worse over time. Would there be an interest (looking at the numbers on here compared to the signatures on Peter Taylor’s request for funding)? This may not be the Herculean task many of us might fear ……..

[BrynGlas in reply to birkie]

He thought he was God, for sure!

[SilverSavvy in reply to humanbean]

OMG humanbean...reading your story is like recalling my own. I was starting to get poorly aged 39 and my vitamins (especially VitB and iron) were appalling. But I was told by a series of doctors for many years that there was nothing wrong with me. Even though I was nutrition savvy, eating well, taking a multivitamin and in the gym every other day. By 55 I had 'significant' diverticular disease (according to a colonoscopy), awful osteoarthritis, wasn't sleeping, struggled to work with brain fog and had gained 3.5stone. I told every doctor I encountered that there was pernicious anaemia and bowel cancer running through my family like a stick of rock. None of them paid any heed because I lived in a different part of the country and the docs weren't familiar with them. Eventually, I moved and crawled to a new doc locally and begged for yet another thyroid test. Was told my thyroid was okay at 4.75. But by then I'd read some things on this forum and demanded an additional T4 test. Hey presto, diagnosis of hypothyroidism and treatment. Two and a half years later we're still tinkering with correct treatment. It's been 21 years now...gah!!! Thyroid disease is so very badly handled in this country and yet the Govt wants us all in the workforce until 67. Something has to give.

[humanbean in reply to SilverSavvy]

If your TSH wasn't getting you taken seriously but your Free T4 was so low that you got a diagnosis it suggests that you have Central Hypothyroidism (CH), rather than the more common Primary Hypothyroidism (PH). But most doctors believe that testing TSH is the gold standard that can never be wrong, which is bad news for those with CH.

In PH the problem for the patient is with a poorly functioning or non-functioning thyroid - it isn't good at producing the thyroid hormones, T4 and (some of the body's) T3.

In CH the problem for the patient is with a poorly functioning or non-functioning pituitary or hypothalamus. If the fault is with the pituitary then the patient has too low a level of TSH and the thyroid is not stimulated sufficiently to make it produce T4 and some T3. The hypothalamus stimulates the pituitary to make it produce TSH, and if the hypothalamus can't produce enough of the stimulating hormone the pituitary isn't instructed to produce enough TSH.

I am convinced that I have CH. My pituitary is completely flat and doesn't look at all normal. This was discovered due to me having an MRI to look for another problem, so my pituitary issue was discovered by accident.

I've seen people quoting T4 and T3 results before treatment similar to mine before treatment and their TSH was about 10 in one case and 30 in another case. My TSH never reached 6, so no doctor ever thought I had a problem severe enough to deserve treatment.

I've since been told by a neurosurgeon that the problems I have (with the flat pituitary) is something I was probably born with.

[SilverSavvy in reply to humanbean]

Wow, HB. So very many things to know/find out. What a journey you've had x

[BrynGlas in reply to SilverSavvy]

At 71, I have about given up. What a waste of those years. I am back to the 'just keep taking the tablets'. I get more peace that way at least.

[helvella Administrator]

Years ago, I found that the local GP surgery had a diagnosed incidence of hypothyroidism at around 2.1%.

If we double that to allow for the many who are hypothyroid but undiagnosed (including so-called subclinical and those regarded as too old so no value in treating, etc.) - and add in a number who have hyperthyroidism, a thyroid cancer, a goitre or nodule - it is very easy to reach 5%.

I feel you have to exclude many to keep it down to one in twenty.

[SmallBlueThing in reply to helvella]

It was interesting to observe the level of concern from GPs at my surgery when one of their own went hyperthyroid and took early retirement.

[BrynGlas in reply to SmallBlueThing]

Am I surprised!

[Bearo in reply to helvella]

I play in a recorder consort. There are four of us. We’ve been playing together for about 7 years. I only recently discovered that hypothyroidism in our group is 100%.

[mrskiki]

I was diagnosed by a female locum. First thyroid test. I wonder if otherwise it would have taken even longer to diagnose.

[Mermaid1919 in reply to mrskiki]

After 17 months of heart issues, chest pain, breathlessness, hair loss, trips to A&E, constant feeling of being unwell and being fobbed off by GPs, it was the mental health practitioner I had been referred to.. (due to how it had all made me feel) that recognised the Thyroid issue..!!

[Rita-D]

I was diagnosed 8 months after my husband died. Had been going to GP with a whole list of symptoms which I wrote down and she ignored! She kept saying I was grieving and kept giving me various solutions for my lack of sleep, ignoring the list of 20 or more symptoms that I had written down. I finally got a TFT blood test after I turned up without makeup and she could see the extent of how this was affecting me. She also did antibody test too and I have Hashimoto’s disease, although no medic has ever told me this. It then took another 6 years of suffering before I did a private test and found I was heterozygous for the DIO2 gene. It then took another year to get prescribed liothyronine by the endocrinologist and several months to get my GP to actually write the prescription!

I am so much better on a combination dose although I still cannot lose the weight. I’ll take how i feel now than how I felt on ever increasing doses of Levothyroxine that made little difference.

I have a private prescription for the T3 as I’m so worried that it might be taken away by the CCG.

[SilverSavvy in reply to Rita-D]

Hi Rita D

I'm so sad to hear that your grief for your husband was misdiagnosed as the reason for your thyroid symptoms...what a dreadful time you have had. My condolences also on the loss of your husband.

May I ask what made you get the gene test and where you went for it? My son is now exhibiting some of the early symptoms that I experienced at his age so I am considering gene testing for his sake as well as my own. I have been wondering about the D102 gene playing a part in our problems.

[Rita-D in reply to SilverSavvy]

I just wasn’t getting any better with ever increasing doses of Levothyroxine. I had tried NDT and found it didn’t suit me. I saw Dr Peatfield too as well as the NHS endocrinologist. I was getting a lot of flack from my family for going to alternative practitioners when I wasn’t getting any better. I had a short syncathen test on NHS to see if I was producing TRH - I was, so I had to think outside the box.

I’m not sure if it was this forum or ITT (Improve thyroid Treatment) forum but a lot of people were discussing the DIO2 test and one of the ladies was a Neuropathic Health Practitioner who offered to be the conduit for the tests for members of the forum. The test was from Regenerous. You have to buy the test from and have your results sent to a practitioner that’s registered with them. It was December 2017, so I’m not really sure how you would go about it these days.

Good luck!

[Agitator23]

Thanks for posting this. Really good information to use at my next GP appointment...

[SilverSavvy]

It IS interesting serenfach, thank you.