How do I get diagnosed?: I had COVID for the... - Thyroid UK

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How do I get diagnosed?

Purpledharma profile image
11 Replies

I had COVID for the first time in January. I was unable to do any exercise for ages, being knocked back if I even tried walking around the block for 10 minutes a month later. I seemed to be getting a bit better but had started noticing that I was a bit dizzy on and off.

Three weeks ago, having felt well enough to walk to work for the first time, I started to feel really dizzy and increasingly nauseous as the day went on. Oddly, this dizziness wasn't accompanied by the normal room spinning of vertigo. With the dizziness was fatigue and increasing brain fog. It got worse after eating my evening meal. I noticed that sitting or standing still (working or trying to prepare meals) made it significantly worse.

The following day I felt worse and really awful after eating lunch and was advised to go the A&E by my GP. I was admitted having had vagal syncopy after sitting still for 4 hours waiting to be seen and moving to the treatment area. My blood pressure stayed below 100/xx over the weekend. I was seen by an endocrinologist and had lots of blood tests. Cortisol results were inconclusive. Nobody asked if I was taking vitamin supplements - I take vegan B complex 5 days per week to manage my fatigue and brain fog. I learnt yesterday that the short synthacten test was "normal".

I have been unable to let the clinician know about symptoms after the test. 14 hours after the test (when trying to get to sleep) I experienced strong heart beats for about 30 minutes. The next day and a half I felt almost normal again then it was as if I had been unplugged at lunch time two days later then I felt worse again, as bad as when I was admitted to hospital.

Can anyone suggest what I need to say to my GP, how to get them to look perhaps at my pituitary?

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Purpledharma profile image
Purpledharma
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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Are you vegetarian or vegan

Essential to test vitamin D, folate, B12 and full iron panel including iron and ferritin

What vitamin supplements are you currently taking

Exactly what test results have you had done so far

For full Thyroid evaluation you need TSH, FT4 and FT3 tested 

Also both TPO and TG thyroid antibodies tested at least once 

Thyroid levels should be tested early morning, ideally around 9am for highest TSH

Purpledharma profile image
Purpledharma in reply toSlowDragon

Thank you SlowDragon - not so slow in responding to my first post!

I'm not sure what my problem is. Pre-covid I always thought of myself as pretty healthy and active. Though if I look back I've had my share of issues over the years, ME in my late 20s and a miserable early perimenopause that I managed after getting diagnosed with diet and supplements. I had a persistent mild, dry cough for a few years and my family have told me that I have been getting more tired out for some years now.

I'm vegan (for almost 10 years) and was vegetarian from my late 20s (it was part of my recovery from ME) Currently I am weaning off Vogel's menopause support taking just 2 tablets per week, I take a D3 supplement 3 times per week, vegan MSM glucosamine week days, vegan B complex weekdays and Udo's oil omega oils 15 ml daily. I had massive craving for broccoli once my appetite returned after getting covid. I started taking the B complex about 5 years ago when fatigue and memory problems led me to getting referred to the memory clinic. I realised that my metabolism and dietary needs have been changing since the menopause and started taking the B complex and within the month fatigue and memory problems resolved.

Low normal blood pressure runs in the family. My grandmother had a hyperactive thyroid but I am unaware of any other close relative having this problem.

I've no idea of the tests that were run in hospital the other week - they took a lot of blood! The synthacten test I have been told over the phone by the secretary was "normal" but I haven't seen the actual letter or results.

Are these blood or saliva tests that you refer to?

I have a phone appointment booked with my GP practice tomorrow. So your ideas on what to say or request are very helpful,

Purpledharma profile image
Purpledharma in reply toPurpledharma

I forgot that I also have turmeric daily as I have osetoarthritis and have found that this means I have virtually no pain and no need to take any pain relief

SlowDragon profile image
SlowDragonAdministrator in reply toPurpledharma

First step is to get full thyroid and vitamins tested

Vegetarian and vegans are frequently extremely low in iron/ferritin

Have you got any test results from GP you can add

Presumably you have had lots of tests

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...

If paying for private blood draw for a Medichecks test ….suggest you also get full iron panel test at same time

Medichecks iron panel test 

medichecks.com/products/iro...

Also as a vegan you possibly need to test iodine levels

But get other tests done first

Genova Diagnostics for iodine test

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

Click on "Read the list of available tests" and on page 3 of the pdf you'll see

Urine Iodine Test:

Specimen requirements: Urine

Order Code: END25

Turnaround time: 5 - 10 days

Iodine is an essential trace element, vital for healthy thyroid function. Adequate levels are required to enable the production of T3 and T4 thyroid hormones, whilst also being required in other areas of health.

Deficiencies can lead to impaired heat and energy production, mental function and slow metabolism. Urine iodine is one of the best measures of iodine status. This test is not performed as a loading test, but can be used to establish existing levels or to monitor iodine supplementation.

SlowDragon profile image
SlowDragonAdministrator in reply toPurpledharma

Get printed copies of test results and ranges from Receptionist after appointment

come back with results

thyreoidea profile image
thyreoidea in reply toPurpledharma

Hi Purpledharma, you can get any records from NHS hospitals by requesting them. My local hospital now does an online access to request these, beforehand it was a form you could be sent by email which you filled in and scanned in and emailed back or by post. You should find the numbers and email on your hospital website, I have even had CT scan results and X-rays sent to me on a CD which can be viewed on a PC, paper copies of test results and even records of stays in hospital can all be sent to you. I do not know anything about Vagal Syncopy alas although I do have low blood pressure and know how poorly it can make you when ill with something else.

DippyDame profile image
DippyDame

Welcome Purpledharma . Sorry to hear you've had such a miserable time.

What was your state of health pre covid?

Do you have the results of the tests carried out by the endo....if not you are legally entitled to request copies. Ask at your surgery.

A full thyroid test to include the following should help provide a picture of what is going on....

TSH, FT4, FT3, vit D, vit B12, folate, ferritin and thyroid antibodies TPO and Tg

Your GP may not be able to provide all tests. In this case many of us test privately

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

There are discounts available via TUK

Do you have any family members with a diagnosis of thyroid disease?

Covid will have had an impact on your health which may take time to resolve

It sounds as if you suspect a link between covid and thyroid disease.

In your shoes I'd want to know about my FT4 and FT3 labs....particularly FT3 which is the active thyroid hormone essential to every cell in the body. It needs to be available in an adequate and constant supply.

Medics tend to focus on TSH which science proves is not a reliable marker

thyroidpatients.ca/2021/07/...

This may also help...

thyroiduk.org/about-thyroid...

Please come back with any further information you may have and members will try to help.

Meantime be kind to yourself ....and have a discussion with your GP about further thyroid tests and any labs he has received from the hospital. I don't think,you need to be concerned about the pituitary at this point.

Good luck!

Purpledharma profile image
Purpledharma in reply toDippyDame

Thank you. I replied to SlowDragon with some of the information you ask for.

It's early days trying to get a diagnosis for my symptoms.

I found my post-synacthen test symptoms odd and there were some interesting comments about this on the Addison's group posts that led me to HealthUnlocked.

DippyDame profile image
DippyDame in reply toPurpledharma

Thank you...

Very shortly after my synachten test ( 2019) I felt like a different person, it lasted about 24 hrs then slap bang back to usual symptoms.

I understand that was connected to the ACTH in the test injection... raised in the serum level ( for a short time!)

Baseline test should exceed 190 nmol/L

A cortisol of >420nmol/L at 30 minutes post Synacthen indicates an adequate adrenal response

I was told no action required...

You should have been given your results!

My baseline at 0 mins was 193nmol/L and at 30 mins 739 nmol/ L

This might help

gloshospitals.nhs.uk/our-se...

Addison's is a fairly rare disease what caused you to investigate this?

Concerned about your adrenal you could try an adrenal cocktail!!

stopthethyroidmadness.com/a...

Having said all that, information overload can just add to problem!

So, I would absolutely agree with SlowDragon... concentrate on your thyroid panel first before worrying about any other hormone issues

greygoose profile image
greygoose

Hi Purpledharma, welcome to the forum. :)

Vogel's menopause support is made from soy, which is very bad for hypos. It affects the absorption of thyroid hormone at a cellular level, so the problem doesn't show up in a blood test - bloods can look perfectly ok, but you are still having problems because the hormone doesn't get into the cells.

The synthacten test I have been told over the phone by the secretary was "normal" but I haven't seen the actual letter or results.

Yes, you do need to get the actual numbers here because just saying 'normal' isn't very helpful. This test tested two things: adrenal function and pituitary function. But doctors often don't seem to understand that, nor the results. Do you know why they did that test? Was your cortisol tested beforehand and found to be low?

Purpledharma profile image
Purpledharma

Hi again, thanks for your help. The fast track referral 😜 has not materialised yet. I had a conversation with my GP practice and they have agreed to.stsrt the ball rolling and I have am appointment next week for blood test. Hooray.

I understand that I need to stop vitamin supplements a week before. What about turmeric and minerals?

I started taking the adrenal boost drink a few days ago too. Salt plus cream of tartar and vitamin C. I take time release with bioflavinoids with breakfast and put some home grown aronia juice in the salts and take it an hour or so later.

Thank you 😊

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