Is under active thyroid linked to functional neurological disorder?

[Bear50]

I have had diagnosis of under active thyroid for over 20 years and have never actually seen my blood results I have never had them regularly done either. Since Feb 2019 I have had stroke like symptoms which eventually I was give diagnosis of hemiplegic migraines with functional neurological disorder on one of my support groups they have mentioned that thyroid problems could be linked looking for answers as I’m not getting them anywhere else. I’ve have to give up work, driving through I’ll health and I feel I’ve been left. Would be great full for some information

[Nanaedake]

If hypothyroidism is adequately treated I wouldn't expect to suffer from the symptoms you describe. You need to check historical blood test results, get printed copies with lab ranges or register online to view blood test results. You should also check that B12, folate, ferritin and vit D have been tested as neurological disorder can be a result of low B12. Have you got stomach or digestive problems?

[Bear50 in reply to Nanaedake]

Yes I have been diagnosed with Barrett’s oesophagus

[Nanaedake in reply to Bear50]

What about gut function? Do you take any medication besides levothyroxine?

[Bear50 in reply to Nanaedake]

Yes ranitidine and omeprazol

[Nanaedake in reply to Bear50]

OK, well good advice I see below.. Omeprozole will reduce your ability to absorb nutrients from your food and will hinder levothyroxine absorption. Don't suddenly stop taking it but you need a proper review and to consider alternative methods of treating gut dysfunction. Who diagnosed you and have you seen a gastroenterologist?

I can't tell you how many times I've read people have been plonked on omeprozole on this forum without exploring any other options such as probiotic and fermented foods. Also need to rule out deficiencies and gluten intolerance or coeliac disease as underlying causes of gut dysfunction.

It sounds like you've been putting up with suboptimal health and su optimal care for a long time. Time to sort it out I'd say.

[Clarabella72 in reply to Nanaedake]

Wow!!! I have just been prescribed omeprozole

[Marz]

Please obtain copies of all your test results ASAP - time to take control. Raised Homocysteine can be a cause of brain events and is raised when B12 is LOW in range. You may need to test privately along with everything thyroid . Do you have Hashimotos ?

[Bear50 in reply to Marz]

Drs have never questioned it and I’ve never asked

[Marz in reply to Bear50]

Am afraid there are many things we have to do for ourselves. You are taking a PPI which will lower your B12. Hypos usually have low acid not high ...

[shaws Administrator in reply to Bear50]

Members on this forum find out that few doctors know very much about how to treat patients who are hypothyroid. They only seem to take notice of the TSH alone and this is from the pituitary gland, not the thyroid gland.

When you have a test for your thyroid hormones, it has to be the earliest possible. You allow a gap of 24 hours between your last dose of levo and the test and take it afterwards. You should take the dose with one full glass of water and wait an hour before eating.

You can get a private blood test (a home finger pin-prick test) and if you decide to do so, make sure you are well-hydrated a couple of days before and take hormones after the test, not before. A Full test should be: TSH, T4, T3, Free T4, Free T3 and thyroid antibodies. If antibodies are present you'd have an Autoimmune Thyroid Disease and it is also called Hashimoto's.

thyroiduk.org.uk/tuk/testin...

GP should test B12, Vit D, iron, ferritin and folate and all should be optimum. B12 and Vit D are prohormones rather than vitamins.

thyroiduk.org.uk/tuk/testin...

[Bear50 in reply to Marz]

I’d never heard of it never really been given much information on the condition just took the dose they advised

[Marz in reply to Bear50]

Sorry - what have you not heard of ? Surely you read up on the drugs you were prescribed before taking them ⛑

[shaws Administrator in reply to Marz]

I've rarely looked up prescription medication, as you're apt to rely upon the doctor - once diagnosed as hypo I've always double-checked as it comes as a shock that they cannot diagnose hypothyroidism - even with a TSH of 100. I think the majority on this forum have found that the few doctors who helped patients have now retired or died. They were also up against the rules of the BTA et al.

[gabkad in reply to shaws]

The pharmacists know much more about the drugs than the doctors.

They also check for potential drug interactions or adverse effects.

Sometimes people have more than one doctor (as in seeing a specialist

or two) and everyone is prescribing drugs. Best to get all scripts filled

at the same place.

[SlowDragon Administrator]

First step is to get copies of your historic blood test results going back last 4-5 years minimum

How much Levothyroxine are you currently taking?

Do you always get same brand of Levothyroxine?

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.

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.

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

Low B12 is EXTREMELY COMMON

Low B12 can cause neurological issues

Vitamin levels need to be OPTIMAL when on Levothyroxine

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten.

So it's important to get TPO and TG thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Come back with new post once you get copies of old results

And after getting FULL Thyroid and vitamin testing

Being left on too small dose of Levothyroxine can frequently lead to low vitamins

[humanbean]

Anything described as "functional" in medicine is doctor code for "it's all in the patient's head" and the usual treatment is dismissal and abandonment by the medical profession.

Before the term "functional neurological disorder [FND]" was used doctors would refer to conversion disorder, and before that it was either neurasthenia or hysteria. Other terms used either now or in the past are somatoform disorder, somatic symptom disorder, bodily distress disorder, and bodily stress syndrome. I very much doubt that list is complete.

Doctors keep changing the names to try and pull the wool over patients' eyes to reduce the risk of them finding out they have been fobbed off or tarred with the "mentally ill" brush and then protesting about it. Anyone with a mentally ill tag of any kind on their records finds it very hard to get diagnosed and treated for absolutely anything (unless it happens to be visible, and even then they might be told that "it's not that bad"). Instead their problems are blamed on their mental health.

pdfs.semanticscholar.org/30...

I've been told that problems of mine were caused by some form of "functional" disorder in the past, and it is becoming more and more common as doctors try to save money and refuse to spend money on investigating health problems. In some cases, patients are offered CBT (Cognitive Behavioural Therapy) or anti-depressants. They are common "treatments" used for fobbing people off, and I don't think they help many people. Women are by far the majority of the people with "functional disorder" diagnoses, because so many of us are not trusted by doctors.

Hypothyroidism is commonly under-treated or wrongly treated or is diagnosed years after the condition has developed. Patients end up with low nutrients, poor levels of T3 (the active thyroid hormone), they have levels of cortisol (a stress hormone) which are too high or too low and this has many impacts on physical and mental health. Gut health suffers. Patients go on diets because they gain weight and so often those diets are of poor quality and low in nutrients.

Self-help is possible and you can get better than you are. Before you can do that though you need information about your own health. And that involves getting hold of as many blood test results and reference ranges as you can from your surgery.

[humanbean]

That's appalling. It's the first time I've heard that particular "diagnosis". I wonder if she had low B12.

[Lizzigill]

I was diagnosed with fnd after stem cell transplant in 2017 and now Hashimotos. Had partial thyroidectomy in November. T3efinitely helps with tremors. I think there can be a link or cross over.

[SlowDragon Administrator]

Majority of hypothyroid patients have LOW stomach acid

Omeprazole can significantly lower vitamin absorption

pulsetoday.co.uk/clinical/m...

gov.uk/drug-safety-update/p...

Vitamin levels need to be optimal for good thyroid function

If you have to continue on omeprazole this needs to be taken as far away from Levothyroxine as possible

There are thousands of posts on here about low stomach acid

healthunlocked.com/search/p...