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oceanescape profile image
20 Replies

Hi everyone,

I was diagnosed with ME in 2013. I experience fatigue, I can sleep for hours, pains, brain fog, anxiety, depression, easily irritable. Research shows that a large percentage of these people were misdiagnosed and it could be thyroid related.

I WOULD REALLY APPRECIATE If anybody could advice on my tests results please. Im desperate for answers and help.

I have done blood tests with Medichecks as follows:

Folate ( Serum) 11.66

Vitamin D 94.8

CRP HS 13.83

Ferritin 144

B12 active 150

TSH 2.25

Free T3 3.44

Free Thyroxine 13.9

Thyroglobulin Antibodies 12.1

Thyroid Peroxidase 9

Thank you

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oceanescape
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20 Replies
greygoose profile image
greygoose

Sorry, but for anybody to be able to comment, we have to have the ranges, as they vary from lab to lab. :)

SeasideSusie profile image
SeasideSusieRemembering

oceanescape

Welcome to the forum.

We really need reference ranges when results are posted as ranges vary from lab to lab and not everyone knows Medichecks ranges.

TSH 2.25 (0.27-4.2)

Free T3 3.44 (3.1-6.8)

Free Thyroxine 13.9 (12-22)

Your thyroid results are classed as euthyroid (normal). A normal healthy person would have a TSH level no higher than 2 with FT4 about half way through range, although as we are never tested for a baseline when healthy none of us know where our own "normal" is. Your TSH is a bit high and your FT4 is quite low at only 19% through it's range. This would suggest that you are heading towards hypothyroidism but to be diagnosed with Primary Hypothyroidism your TSH would need to be over 10. To be diagnosed with Hashimoto's (autoimmune hypothyroidism) your TSH would need to be over range with raised antibodies.

Your antibodies are low but as antibodies fluctuate then one negative result doesn't exclude Hashi's, also you can have Hashi's without raised antibodies.

It would be worth repeating the thyroid tests again in about 3 months or so.

Folate ( Serum) 11.66

This is OK, with their low limit of around >3.9 then being in double figures with a Medichecks test is OK.

Vitamin D 94.8

This is just about OK, the Vit D Council/Vit D Socieity recommend a level of 100-150nmol/L. You may want to take a lowish dose of Vit D, especially during the winter months and currently as it's being mentioned in connection with the virus, say 1,000-2,000iu D3 daily, along with D3's important cofactors - magnesium and Vit K2-MK7.

CRP HS 13.83

This is high, I believe their range is <5. CRP can be raised due to infection or inflammation (Hashi's can cause inflammation).

Ferritin 144

This is a good result. Do you supplement?

B12 active 150

This is a good result, do you supplement?

Do you take any medication or supplements?

Did you do the test early morning, no later than 9am, and nothing to eat or drink except water before the test?

oceanescape profile image
oceanescape in reply to SeasideSusie

Thank you so much, I don't supplement at the moment , no. Vitamin and Folate I fasted as they asked me to repeat tests. For the rest, I didn't fast and took samples in the afternoon. ( didn't think to do it in the morning) and wanted to post them back asap.

SeasideSusie profile image
SeasideSusieRemembering in reply to oceanescape

oceanescape

For the rest, I didn't fast and took samples in the afternoon. ( didn't think to do it in the morning) and wanted to post them back asap.

OK, so to get the highest possible TSH (which is needed when looking for a diagnosis) then test should be done no later than 9am as TSH is highest early morning and lowers throughout the day. Eating can also lower TSH and coffee can also affect it. There's no saying how much higher your TSH would have been, but it would have been higher than the afternoon level.

oceanescape profile image
oceanescape in reply to SeasideSusie

Thank you

SlowDragon profile image
SlowDragonAdministrator

Ft4 and Ft3 are EXTREMELY low

But TSH hasn’t risen

Ft4 is only 19% through range

Ft3 only 10% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

This suggests some degree of central hypothyroidism

Have you ever had ultrasound scan of thyroid?

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Was there anything specific that precipitated your ME?

Lots of possibilities

Head trauma?

Gut infections or virus,

glandular fever,

Lyme,

Sheehan syndrome

Breast implants

Anorexia

Bulimia

Any gut symptoms?

oceanescape profile image
oceanescape in reply to SlowDragon

THANK YOU FOR YOUR REPLAY:

Have you ever had ultrasound scan of thyroid? - NO

Was there anything specific that precipitated your ME?

YES, MENTAL TRAUMA FROM CHILDHOOD, PTSD, YEARS ND YEARS OF SRESS AND OVERDOING,

Lots of possibilities

Head trauma? - NO

Gut infections or virus, BEFORE MY ME STARTED I HAD 2 BIG FLUES WITHIG 1 MONTH

glandular fever, - NO SORE TROATH

Lyme, TESTED NO

Sheehan syndrome DON'T THINK SO

Breast implants NO

Anorexia NO

Bulimia NO

Any gut symptoms? IBS 8 YEARS AGO, NOW IS FINE

SlowDragon profile image
SlowDragonAdministrator in reply to oceanescape

Have you done an adrenal saliva test?

regeneruslabs.com/products/...

cdn.shopify.com/s/files/1/0...

Long term stress can affect gut and cortisol

Stress, adrenals and thyroid are all linked

healthline.com/health/hypot...

chriskresser.com/5-ways-tha...

hypothyroidmom.com/cortisol...

drlamcoaching.com/adrenal-f...

jimh111 profile image
jimh111

These results suggest that your pituitary is producing insufficient TSH, what I call subnormal TSH secretion as it is not full blown central hypothyroidism. It is the abnormally low TSH that is diagnostic. The combined low normal fT3, fT4 is much worse than in patients with a high TSH, low fT4 and normal fT3 who have no trouble in getting a diagnosis. I would push very hard for a trial of thyroid hormone.

jox1 profile image
jox1

ME is a complicated area. It's certainly true that suppressed thyroid function is present in many with ME. I would not say this means misdiagnosis has happened. Have a look at Sarah Myhill protocol to address the deficiencies in ME. Perhaps do retest after several months of additional interventions

HashiFedUp profile image
HashiFedUp

I suffered from chronic joint pain for five years, along with mood disturbance and anxiety, exhaustion etc. I was told I probably had some sort of condition like connective tissue disease. Fast forward a few years, had an underweight baby, felt even worse after that, so pressured the doc for more tests etc. Eventually diagnosed with hashimoto’s in 2016. 8 years after i first went to the doc.

What Im trying to say is you have to keep pushing for the right answers. Dont ever let them say “well i dont know what it is” or be use a vague label like ME or CF or whatever. Go private if necessary. I did eventually and after years and years I am finally well! x

oceanescape profile image
oceanescape in reply to HashiFedUp

THANK YOU, YOUR WORDS REALLY MEANS A LOT TO ME! I feel like a burden, all doctors says you are fine but I'm not and only suggest the increase of antidepressants (on which I really DON'T WANT TO BE my whole life). I JUST WANT TO FEEL WELL.

Marigold57 profile image
Marigold57

My heart goes out to you because I have ME too and have been searching for answers for a very long time. My TSH is lower than yours but I have T3 and T4 in the lower ranges and yes some antibodies as you have, but not enough to be diagnosed with Hashimotos or hypothyroidism. I have read conflicting professional medical articles about antibodies- some say that you shouldn't have any and that their presence is indicative of the likelihood that you will develop thyroid disease at some point later in the future, and some say that a few are to be expected as most people will not be zero.

I know Sarah Myhill feels that a t4 in the lower range of normal will cause tiredness, but I have read articles suggesting that the body is lowering t4 in an effort to lower the metabolic rate to protect a body that is struggling to produce energy from cells as seen in ME and is essentially saving your life. It is all so confusing and as such I have not sought treatment as I don't have the criteria to be treated on the NHS.

The good thing is you have good levels of B12 and Ferritin which are important to optimise.

oceanescape profile image
oceanescape in reply to Marigold57

Bless you, I understand the pain.....I'm so fed up, I'm booking to see private endocrinologist

Marigold57 profile image
Marigold57 in reply to oceanescape

Bless you. Will you let me know how you get on because I am also considering doing this myself. Do you live in the UK?

oceanescape profile image
oceanescape in reply to Marigold57

Yes, she agreed to do phone consultation as opposed to face to face. 16th of May I have it so will let you know.

Marigold57 profile image
Marigold57 in reply to oceanescape

That is brilliant. Thank you and good luck- I hope she can help and then maybe you can recommend her in a PM. x

dashi2208 profile image
dashi2208

Hi, about 25 years ago I had M.E. for about 4 years following some sort of virus. I had all of the symptoms you mention plus dreadful night sweats.

I took up Hatha Yoga and very quickly started to feel better until eventually, after maybe a couple of months, the M.E disappeared never to return. During that time when I could feel an M.E 'attack' coming I would get into a Dog Pose and hey presto . . . I'd feel well again.

HLAB35 profile image
HLAB35

If you are not already familiar with Dr Myhill then it'd be worth checking out her website. High CRP indicates very high widespread inflammation. This is often the case in Rheumatoid Arthritis and many other autoimmune illnesses. I wouldn't give up just because you've been told 'it's not Hashimoto's'. Your t4 and t3 levels are pretty dire to be honest, so even if your thyroid is functioning - your brain has down regulated your thyroid (low tsh) and you'll be getting many hypo symptoms. ME / CFS is not a diagnosis in itself, but more of an umbrella term. It'd be unusual if adrenals did not play a major role in the development of anyone with ME, so it'd be a good place to start....

amymyersmd.com/2017/03/adre...

mandyjane profile image
mandyjane

It looks like you may have central hypothyroidism but getting a diagnoses and treatment in the UK ( it has the widest range of normality in the world so much more likely to go untreated than elsewhere) is going to be difficault if not impossible. You options are

a) get the list of more helpful doctors available via TUK website and ask for GP to refer or pay to see one of them privately.

b) phone pituitary foundation for advice re endos who might be helpful given your results ( central hypo is pituitary problem)

c)Begin to explore self treatment options. It is hard to make sense of your results without the ranges but as a guestimate you should start on some B12 lozenges or patches as it looks low ( dont take tablets as will not be able to digest). There is a lot of advice available here for those who self treat but you will need support and guidance. It is not something to do on your own or to start and then stop as this is dangerous.

Do you take any proto pump inhibiters such as omprezole?

I think thyroid conditions often follow on from trauma, especially childhood trauma as it is often repeated many times. I think it may be the bodies coping mechanism. Having long term fatigue/ thyroid conditions make you sleep a lot and therefore maybe helps you process the trauma in your dreams, It also tends to inhibit reproduction which may be natures way of protecting offspring from trauma if bodys feels unsafe as a result of injury's. It is also a way of your bodys forcing you to meditate, to sit quietly and formal meditation practice ( mindfulness at first or yoga) would probably be really helpful for you. To help boost your adrenals have a go at thinking about the current threats to your safety every morning ( we are all under threat from various sources eg traffic) and write a list of actions you need to take to protect yourself. Keep coming back to us here. I am sure you can get better but it may take some time and some trial and error. If I was you I would avoid big battles with the NHS and doctors. It is exhausting and people rarely if ever win. There is a saying that 'if you haven't got a big enough bomb throw flowers'. I have got to a point with doctors that through gritted teeth I am nice to them if I have to deal with them even though I could wring their necks.

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