Reading daughters Medicheks results. Done in op... - Thyroid UK

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Reading daughters Medicheks results. Done in optimal conditions.

sunnyday7 profile image

My daughter was diagnosed 8 years ago with ME. My mother my aunt and myself have underactive thyroid. I’m not totally convinced my daughter dosent have the same . I had to fight for years to get myself treated as my results we’re always within ‘range’.

We’ve had a useless appointment with an Endo and GPS that haven’t done optimal and complete blood tests. So we’ve done our own in the conditions recommended on this forum. Please could you look at them and tell me what you think.

I can see that some levels on the results need improvement. Can you tell me how we go about this please? What she should take, and when she should take them.

I can fill you in with symptom details if you need them.

34 Replies

It would be useful to know her symptoms. Her thyroid hormone levels are very good but sometimes there can be peripheral resistance to thyroid hormone which causes hypothyroidism. It’s worth giving detailed list of her physical and mental signs and symptoms.

Gingernut44 profile image
Gingernut44 in reply to jimh111

Do you really think a TSH of 6.98 is good ?

Hi there, what’s your thoughts?

jimh111 profile image
jimh111 in reply to Gingernut44

TSH is not a thyroid hormone but this TSH is OK as it is successfully stimulating sufficient T4 and good T3. Of course it is possible this elevated TSH is indicating a thyroid that is beginning to fail but this would not explain her profound symptoms.

The danger is we see evidence of minor thyroid failure and seize on it to explain what is a substantial illness. It may well be hypothyroidism but it is not explained by a lack of normal hormone levels. I’m trying to find a clue to the underlying problem. If it is related to thyroid hormone she will probably need abnormally high serum hormone to get well. Doctors will need a good reason to do this, especially in a child.

sunnyday7 profile image
sunnyday7 in reply to jimh111

She’s now 23

Gingernut44 profile image
Gingernut44 in reply to jimh111

OP’s daughter is not a child - she is 22 years old.

sunnyday7 profile image
sunnyday7 in reply to jimh111

Thank you for your reply. Here’s a list of symptoms:Brain fog,

Depression

Hair loss

Weight gain

Migraines

Chronic allergies

Depression

Chronic fatigue

Insomnia

Muscle pains

Temperature fluctuations

Kidney stones

Possible Elos Danos syndrome

jimh111 profile image
jimh111 in reply to sunnyday7

This is difficult it could be hypothyroidism, only a trial of thyroid hormone would rule it out. I had in mind a form of resistance to thyroid hormone caused by a mutation of a receptor gene but this is usually spotted in childhood and tends to come with ADHD. The danger is by focusing too much on thyroid other diagnoses are missed.

I would try to get a trial of thyroid hormone including some liothyronine with careful monitoring to ensure there isn’t over activity. She will either get better or develop hyperthyroid signs. Sadly I can’t think of any doctor who would be prepared to do this even though it is perfectly reasonable. It may not be hypothyroidism and if it isn’t it’s important to move on and try to find what it is. I’m afraid this is beyond my knowledge and I don’t want to bring in too much guesswork.

SlowDragon profile image
SlowDragonAdministrator in reply to sunnyday7

Possible EDS?

We have many autoimmune thyroid patients who have EDS

Very many of them discover they have undiagnosed gluten intolerance

Has she had coeliac blood test done yet

Request or organise coeliac blood test BEFORE considering trial on strictly gluten free diet

SlowDragon profile image
SlowDragonAdministrator in reply to sunnyday7

Kidney stones

Has she had parathyroid levels tested

parathyroid.com/kidney-ston...

Important to test calcium and vitamin D at same time as parathyroid

Has to be done at hospital phlebotomy dept as needs immediate processing

hyperparathyroidmd.com/kidn...

parathyroid.com/parathyroid...

Calcium pro app

Add her test data and it will analyse results

calciumpro.com

sunnyday7 profile image
sunnyday7 in reply to SlowDragon

Thank you

jimh111 profile image
jimh111 in reply to sunnyday7

Another possible cause of hypothyroidism with normal blood tests is peripheral resistance to thyroid hormone caused by endocrine disrupting chemicals (EDCs). I suffered from this. There are household chemicals that imitate thyroid hormone and disrupt the binding of T3 to receptors. It's a detailed subject which I cover here ibshypo.com/index.php/acqui... .

I would suggest a three month trial of simeticone. Simeticone is an over the counter remedy for 'trapped wind', I doubt it works but it is cheap, safe and available at all chemists. Simeticone contains polydimethylsiloxane which by chance is the substance used to trap EDCs when measuring their levels in the environment. I would suggest you get her to try this before any thyroid hormone. Also, if she has furniture made before 2005 (when toxic flame retardants were used) she should remove it if possible.

I would say her folate and B12 are too low and her CRP is high which indicates inflammation somewhere.SlowDragon is possibly the best person for information on those issues.

Thank you

Has your daughter had a firm diagnosis of Ehler Danos? Ehler Danos could cause a lot of the symptoms you mention and needs specialist management.

In saying that your daughters TSH Ft4 and FT3 are almost identical to mine about 9 months before bloods finally indicated hypothyroidism.

It was also proposed I had 'm.e' when I was 16 however a diagnosis of screaming coeliac disease (the specialist couldn't believe I was upright and walking when I was diagnosed) and hypothyroidism many moons later say otherwise. Keep pushing for your daughter here.

Hi

I have EDS and after having it confirmed by Rheumatologist, along with fibro, I've never had any specialist management. Just painkillers, antidepressants, some physio, pain clinic visits in early days. For the last 12 years I've just been left to get on with it by NHS. I'm currently waiting to see neurology due to neuropathy which could be due to having EDS. I don't know if my EDS is mainly joints and skin or whether I have internal issues as well.

I probably didn't explain that very well. I have a relative just diagnosed where they are being provided with physio, pain management, supplements to support the joints and skin and management of digestive issues. That is pretty specialist treatment! However........this is private health treatment and not NHS so I'm not surprised you've been left to navigate your condition alone.

Bit depressing really.

Hi

Depressing but all too common, I've said it before, the NHS good for acute illness or trauma but chronic conditions, you're on your own. We're expensive, we aren't curable and they aren't interested. There's no glory in treating thyroid issues, arthritis or MS. But I'm cynical lol.

SlowDragon profile image
SlowDragonAdministrator

Her TSH is far too high

Anyone with TSH over 5…..and symptoms should be considered for trial of levothyroxine

gp-update.co.uk/Latest-Upda...

Request ultrasound scan of thyroid

Or test privately £150

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

B12 is extremely low - any active B12 result under 70 is considered too low and needs further investigation

Folate is deficient

GP should prescribe folic acid

She needs full testing for Pernicious Anaemia before starting B12 supplements or B12 injections

High CRP needs more investigation too

Presumably she supplements vitamin D?

How much?

Could reduce dose a bit

1piglet profile image
1piglet in reply to SlowDragon

Hi Slow Dragon, could you tell me which book Paul Robinson talks about the atrophied thyroid please, I have two of his books "The CT3M Handbook" and "Recovering with T3", but cannot see anything in the index of either of those. But I am sure he wrote more. Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to 1piglet

Sorry don’t know …..that’s from his website

1piglet profile image
1piglet in reply to SlowDragon

Thanks, I'll check it out.

TSH of nearly 7 is too high , see this graph of the % pf healthy people with various levels of TSH ... most usual is 'under 2' ..... 'over 4' is highly unusual . ... 7 is not on there

healthunlocked.com/thyroidu...

I was diagnosed and treated with Levothyoxine with TSH of 5.7 then 6.8 and i had been really struggling with symptoms for a few years.

However , i did have very high TPO antibodies , which helped them decide to treat me ., because when they find them they know it would probably get worse anyway ....... your daughter doesn't have any raised antibodies to show the cause of her currently raised TSH is autoimmune hypothyoidism , so they may not be so keen to treat her yet ,

But according to NICE guidelines , raised thyroid antibodies are not needed for treatment of subclinical hypothyroidism (subclinical means TSH has gone over range, but fT4 is still in range).

Once NHS have two over range TSH tests , taken 3 months apart (to rule out a one off ), Then they can consider a trial of Levothyroxine . if there are symptoms of hypothyroidism

Does your daughters GP know her TSH is this high ?

If you go and log into Medichecks and go to the "My Tests" area you'll see a list of all the tests you've ordered.

Click on "View" on the right hand side of any one of them to show the results and you'll see the test name at the top of the page . Beneath that is an option to see a "Printable Results Report" which you can click on, and then you have the option to download the results as a PDF file or print them out.

I think the PDF file makes it easier to see the results in a way most of us are familiar with. Personally I don't think the line graphs are particularly helpful.

Her TSH is far too high. She definitely needs some help.

My private only Endocrinologist explained to me that any TSH above 2.5 is hypothyroidism and you’ll feel symptoms. The NHS let mine get to 36 before they’d help and I was in a bad way. It was also explained to me that the NHS set their ranges too wide. Reason being costs and keeping people away.

If the NHS won’t help please consider going private. If you would like details of my private only Endocrinologist please just message me.

Her B12 looks low to me and her folate is far too low. The guidance is not to supplement with folate / folic acid if B12 deficiency is suspected, until the B12 situation has been determined. I’d suggest posting these results on the Pernicious Anaemia forum here on healthunlocked and ask for advice about those levels.

Any iron results?

sunnyday7 profile image
sunnyday7 in reply to klr31

Just the Ferritin.

Black and white
klr31 profile image
klr31 in reply to sunnyday7

Maybe see if your doctor can test iron for you.

SlowDragon profile image
SlowDragonAdministrator in reply to sunnyday7

She’s not been taking iodine has she …..can cause TSH to spike

Never recommended to risk supplementing iodine

sunnyday7 profile image
sunnyday7 in reply to SlowDragon

No, she takes just an iron supplement 20mg.

SlowDragon profile image
SlowDragonAdministrator in reply to sunnyday7

Needs to have full iron panel test every 3-4 months if on iron supplements

GP should organise

Medichecks iron panel test

medichecks.com/products/iro...

Stop iron supplements a week before test

Test early morning and fasting

Don’t eat steak or iron rich foods night before test

sunnyday7 profile image
sunnyday7 in reply to SlowDragon

Thank you for all your help.

Daughters results in a different format

Since posting my daughters results, we’ve had a chat with our GP. She has agreed to prescribe a 4 months script of folic acid. Also agreed to retest thyroid in 3 months.

We will also do our own medicheks complete thyroid panel test in 3 months.

You kindly recommended getting calcium, Vit D, coeliac, and pernicious anaemia tested.

Can we do these ourselves privately ?

Do medicheks do them and which tests should we choose?

We’ve also pushed for EDS to be looked at again but the GP seemed reluctant to help.

Thank you for your continued advice and help.

Where would we all be without you!!!

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