Why doesn't the NHS test for hashimotos or find the cause of hypothyroidism?

[BlueKeith]

Ive asked a couple of Doctors since i got diagnosed with hypothyroidism about what caused it and they both replied with that its a 90% chance that it was some kind of auto immune disorder that attacks the thyroid and the treatment is all the same ,levothyroxine. Surely it must be beneficial knowing what caused it?

[Tiamosta]

Hi there, pm me.

[Jazzw in reply to Tiamosta]

Why a pm??

[helvella Administrator Thyroid UK]

There is a sort of logic that, unless it affects treatment, there is not that much to be gained from knowing the cause. However, how can the doctor claim 90% if the cause is not being established?

I mean, perhaps it was 90% twenty years ago, but is now 80 or 70%? Or 98%? These could be relevant to the population.

There are some issues expressly related to Hashimoto's - so-called flares. Where thyroid hormone levels rise for a while. Even sometimes being confusable with Graves' disease.

And if at some point a specific treatment is identified (whether some amazing new medicine or a simple revision of best practice), we and doctors need to know the cause in each of us. Otherwise we have no idea who might benefit. After all, there could be recognition of the causes and processes of autoimmune hypothyroidism and non-autoimmune hypothyroidism. And they could really require different approaches.

[BlueKeith]

Its interesting you say about flares where thyroid levels rise now and again which may explain where I sometimes have a hyperactive month and cant cool down to being cold when its warm. It would make sense if got hashimotos to try and moniter levels more regular so could adjust medication accordingly maybe.

[helvella Administrator Thyroid UK in reply to BlueKeith]

My reply was really looking at it from the doctor point of view.

You might well want to know. You might want to at least have the opportunity of trying one or other of the things that are claimed to help.

[starveycat]

My dad had thyroid problems, I have it and so does my eldest daughter , so I thought it was hereditary in my family

[SlowDragon Administrator in reply to starveycat]

starveycat

which means it’s almost certainly autoimmune

It’s more likely we inherit the tendency to susceptibility of developing autoimmune diseases, rather than actual thyroid disease

[SlowDragon Administrator]

They are supposed to test at diagnosis and test for coeliac if cause is autoimmune thyroid disease (hashimoto’s or Ord’s thyroiditis)

You need to test if they won’t

how much levothyroxine are you currently taking

Approx how much do you weigh in kilo

do you have any recent blood test results?

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

 

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies 

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis. 

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis 

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended on here that all thyroid blood tests early morning, ideally just before 9am and last dose levothyroxine 24 hours before test 

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning. Watch out for postal strikes, probably want to pay for guaranteed 24 hours delivery 

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

[SlowDragon Administrator]

Looking at previous posts you have IBS and clearly bad reactions to wheat

Have you had coeliac blood test done

Assuming yes, and it was negative

Are you now on absolutely strictly gluten free diet

approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link) 

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies 

If not yet on gluten free diet…..While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first 

Assuming test is negative you can immediately go on strictly gluten free diet 

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially) 

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

pubmed.ncbi.nlm.nih.gov/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

[BlueKeith in reply to SlowDragon]

Yes had coeliac test and was negative. I used to get the worst ibs with wheat based food so completely cut it out. Since taking levothyroxine I dont have ibs symptoms at all so must have been all thyroid related and have had ibs since late teens so shows how long ive probably had it. I have been gradually introducing gluten foods and not had any stomach problems but maybe gluten free is still the way to go .

[DippyDame]

In time I didn't test positive for autoimmune thyroid disease, but...

I was told the same thing over 20 years ago....

"It won't make any difference because the treatment is the same".

Plus ça change!

Those doctors you consulted appear to have studied from the same outdated notes/lectures.

Establishing a cause is surely an important part of finding a resolution!

We are all different with different problems which require different treatments...."they" just don't seem to grasp that fact.

A gluten free diet helps many Hashi patients.

I refer to your post, " Pasta and Weetabix kills me". You need to consider a GF diet!

Intolerance to gluten does not mean you are coeliac

Positive thyroid antibodies, however, suggest thyroid autoimmune disease/ Hashimoto's

Many of us test privately in order to obtain full thyroid test results.....including thyroid antibodies TPO and Tg

thyroiduk.org/help-and-supp...

[greygoose]

So many things can cause you to be hypo. And, frankly, unless the cause is autoimmune or pituitary/hypothalamus disfunction, I don't see how you could discover the cause with any certainty. You could ask the person if they've ever taken iodine, or used xyz shampoo or oven-cleaner, and if the answer is yes, you could hazard a guess that it might be due to endocrine disruptors. But, then again, it might not be. I don't know how you would know for sure. Plus, there might be some questions people are reluctant to answer in all honesty, such as have you ever been anorexic? Or were you absued as a child? Both known to lead to hypothyroidism in adulthood. But, people might not want to talk about those things. And, in any case, even if the answer is yes to both, it still might not have been the cause. So, as I see it, it's a bit of a lost cause.

But, I do agree that they should be testing antibodies so that you know if it's autoimmune.

[CoeliacMum1]

Why they don’t test for Hashimoto’s or find cause for hypothyroidism, is because that would require NHS spending a great deal of money and time on one person for basically all they’re going to test for and offer is Levothyroxine.

If you already have one autoimmune disease it’s quite likely you’ll have another.

Many GPs haven’t got vast extended knowledge in some areas, unless they had done a particular syllabus when choosing what to study for their medical degree.

Diet & nutrition is usually left to a dietitian when they get areas they can’t simply supplement. If you keep getting deficiencies you should have this looked at and find out why.

Tests/Blood tests they choose to run often give insight to know what is going wrong and they train to diagnose a problem then often medicate the problem rather than get to root cause.

You might find few younger GPs now are looking at areas more holistically, as these lifestyle subjects are on the syllabus and advise how to prevent getting any worse.

You possibly could do genetic testing (very expensive) but even if you have this disposition you may not have the condition. There’s some testing which looks at susceptible areas of diet which can help if you modify your diet include or exclude, this could ward off some areas of concern. If you’re eating a good varied and balanced diet and don’t already have nutritional deficiencies you’re probably doing as best you can anyway, however other factors can disrupt even the best of diets, these are Sleep and areas sometimes we can’t prevent Stress!

Stress can unfortunately turn on various conditions if you think back to when you got the problem diagnosed, scoot back some months maybe a year and see if anything you can think was a trigger for you.

Mine I had an extension on my house, 3months it was supposed to take it ended up being 1 yr and 3 months before finished, in that time I lost a close friend to cancer (under 50) and my dog to old age… I’m positive all that eventually switched on my 3 autoimmune conditions all found at same time well with week of each other.

I feel we need a more holistic approach to health not pharmaceutical lead. Nobody is going to argue there’s some great medication keeping many alive today and NHS is marvellous in extreme areas to fix us…. It’s the mundane day to day long term conditions which seemingly are neglected. I do feel we all need to take responsibilities for our lifestyle choices, but that said most of us are doing best we can with what limited capacities we have, another area of big concern is mental health and often another root cause of many a problem or actually bought on by other areas not fully being addressed.

[arTistapple]

Look they don’t even respond to the diagnosis of hypothyroidism. They don’t even follow their own rules and protocols. Why on Earth would they care about what caused it in the first place? However in saying that, I watched a fabulous Thyroid Trust video on YouTube with Dr PeterTaylor, Cardiff University. He was enthusiastic about hypothyroidism - something previously unseen by me with reference to the disgusting front put on by ‘important’ UK endocrinologists. Dr Peter Taylor seems to be doing some real research into the treatment of hypothyroidism. This is what is the majority of patients on this forum want. The other interviews with our haloed consultants (also on YouTube) are full of ageism and misogyny but frankly anti patient! A UK doctor/scientist enthusiastic about getting to the bottom of treatment and dosage must be worth his weight in gold! However if I was him I would be watching my ‘six’. His back.

[Knip]

Hi, I was told that I would have an underactive thyroid in my early forties, some six years before I started taking Thyroxine, by Rheumatology who said that the 'protein' had shown up in my blood alongside the RA protein. That makes me think that mine is Hashimotos. Is that probable? Take care all of you, The wretched Covid is still around and increasing. K.

[HowNowWhatNow]

What I also don’t understand is why doctors don’t make any recommendations to women who develop thyroiditis after having children.

50% go on to develop full blown Hashi’s and 50% recover - so I was told.

But no information is given out about what you can do - if anything at all - to mitigate your chances of it becoming AI.

With hindsight I would definitely have tried harder to optimise my vitamin levels, avoid stress and perhaps even have gone GF and anything to reduce inflammation levels, and rest more.

I developed flu when I had a 2 month old baby, then developed full body hives and then came down pretty soon after with a high TSH.

I lost a lot of blood in childbirth - nearly to the point of getting a transfusion - as did quite a few people I know who then went on to develop thyroiditis. I think the NHS (or any medical academics!) should monitor women with blood loss to see if and how there’s a causative link in post-natal thyroiditis.

[SlowDragon Administrator in reply to HowNowWhatNow]

HowNowWhatNow

Being anaemic can cause Hashimoto’s to develop

NHS ignores blood test results until way way below range

Low Iron implicated in developing hypothyroidism 

healthunlocked.com/thyroidu...

Ferritin range on Medichecks 

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

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. ‘

[HowNowWhatNow in reply to SlowDragon]

thanks SlowDragon .

I wonder how many women could be saved from developing Hashimoto’s if they had better post-operative and / post-childbirth care. I was told I had lost 1.7litres in childbirth but no real attempt was made to ensure my levels were back to normal before I was discharged from hospital or in the months that followed. At my 6 week review with a gynae consultant (following a childbirth so badly supervised in every conceivable way) the one question I was asked was: “what kind of contraception are you using?”. Not the NHS at its finest/ most empathetic.

The haematologist I’ve seen a few times over the years since, to try to help get iron levels back to normal, has no familiarity with links between hypothyroidism and low iron. I’d better get reading, so I can inform them.

Thanks for all your help.

[SlowDragon Administrator in reply to HowNowWhatNow]

Few more links (you have probably seen)

Low iron might explain why we see so very many many vegetarians or vegans who develop Hashimoto’s

I was vegetarian before Hashimoto’s with poor diet and never took any supplements

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Shellfish and Mussels are excellent source of iron 

healthline.com/nutrition/he...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

[Dizzy444]

I had subacute thyroiditis which is fairly uncommon, many patients who have this recover normal thyroid function, sadly that’s not happened yet in my case. I have many unanswered questions, for instance while I stay on levo will my thyroid just not produce hormones because the levo is supplying my body’s needs ? Are my needs different to those with autoimmune thyroid problems ? So many unanswered questions

[SlowDragon Administrator]

Did you get thyroid antibodies tested privately?

[HowNowWhatNow in reply to SlowDragon]

On NHS - after 6 / 8 months of being on levo. Then, once the results showed these antibodies were high, I was kept on levo and told I did not need to see an endocrinologist about anything. I was also told by one of the senior partners at my GP practice that just because I had high antibodies didn’t mean I had Hashimoto’s.. my crash course introduction into the marvel that is adult female healthcare if you have a chronic / AI condition.