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.
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sunnyday7
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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.
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.
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.
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.
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.
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.
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.
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.
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
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.
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.
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Daughters Blood results
Daughters Blood results
RESULTS FROM ADDENBROOKES for my daughter 
Advice on my Daughter's results please...
