Hi all, hope you are all well and enjoying the sunshine!,
Daughters results are back. Doctor has upped her Levothyroxine to 200mg which seems an awful lot for a 16yr old 🤷🏻♀️
She says she feels fine (apart from tiredness and feeling dizzy).
Any help is much appreciated! ❤
Another thing to add is another doctor spoke to her about a month a go and suggested that her body might not be absorbing it so put her forward for other tests - liver function, coeliac etc which all came back fine.
Is this result from when on levothyroxine? If yes....how much levothyroxine
She is extremely hypothyroid
Which brand of levothyroxine is she currently taking
Is she taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after
Have you considered lactose intolerance?
Has she had coeliac blood test
Gluten intolerance and lactose intolerance are extremely common with autoimmune thyroid disease
Essential to test vitamin D, folate, ferritin and B12
When were vitamin levels last tested
What vitamin supplements is she taking
She needs to see thyroid specialist endocrinologist
Email Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private
tukadmin@thyroiduk.org
The aim of levothyroxine is to increase dose upwards in 25mcg steps until TSH is ALWAYS under 2
When adequately treated, TSH will often be well below one.
Most important results are ALWAYS Ft3 followed by Ft4. When adequately treated Ft4 is usually in top third of range and Ft3 at least 60% through range (regardless of how low TSH is)
Extremely important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works
Is she definitely taking her levothyroxine everyday?
Crikey TSH>100 fT4 is 5 .. well at the moment, i wouldn't worry about it being a lot , as for whatever reason ,(as yet unknown) it doesn't appear to be finding it's way into her blood.
"Is this result from when on levothyroxine? If yes....how much levothyroxine" - yes, she has congenital hypothyroidism and has been on Levothyroxine from 3 weeks old. Has been on 175mg for about 6 months I think?
"Which brand of levothyroxine is she currently taking?" - Accord 100mg and Teva 25mg.
"Is she taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after?" - she has in the last couple of months changed when she takes them. Because she is so tired in the morning she was struggling to have them at the same time, she now has them before bed and swallows them whole instead of chewing them.
"Have you considered lactose intolerance?
Has she had coeliac blood test" - yes. Both have come back negative.
"When were vitamin levels last tested" - just checked, Feb. All normal.
"What vitamin supplements is she taking" - Vit.D. Without checking I'm pretty certain she's taking 1000iu.
"She needs to see thyroid specialist endocrinologist" - you've just reminded me, that's the doctor that called her and suggested the full bloods and that it's not being absorbed.
"Is she definitely taking her levothyroxine everyday?" Yes. She's aware at how serious this is.
Thank you all x
Which brand of levothyroxine?
Always same brand?
Has this changed regularly?
How long after eating is she taking levothyroxine
Anything else changed apart from time she takes levothyroxine?
Eg on the pill?
Please add actual vitamin results and ranges
She may need Liquid levothyroxine and perhaps addition of T3
Malabsorption is common problem when hypothyroid
Accord and Teva and are the names on the packaging, I assume they're the brand names and as far as I'm aware no they've never changed.For the past 6 months or so she's been on 175mg and 125mg, before then she was on 125mg and had been for a long time.
She's having her tablets 2-3 hours after eating.
No, nothing else has changed, she's not taking any other prescriptions.
Accord only make 50mcg and 100mcg tablets
Presumably the 25mcg tablets are Teva
Teva brand upsets many people
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Ah ok. Now she needs to be on 200mg daily, I wonder if there will be a difference in her bloods when she will only be taking Accord. I never thought that a brand might be a problem! If that's the only issue then it would be a miracle though lol
Vitamins are low Hardly surprising with such high TSH
Low folate and B12
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Difference between folate and folic acid
chriskresser.com/folate-vs-...
B vitamins best taken after breakfast
Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)
Or Thorne Basic B is another option that contain folate, but is large capsule
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Low B12 symptoms
b12deficiency.info/signs-an...
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
B12 sublingual lozenges
amazon.co.uk/Jarrow-Methylc...
Ferritin on low side
Looking at increasing iron rich foods in diet
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
List of iron rich foods
Links about iron and ferritin
irondisorders.org/too-littl...
davidg170.sg-host.com/wp-co...
Great in-depth article on low ferritin
oatext.com/iron-deficiency-...
drhedberg.com/ferritin-hypo...
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Does she suffer from heavy periods?
Obviously needs vitamin D tested too
Test twice yearly via NHS
"When were vitamin levels last tested" - just checked, Feb. All normal.
That word 'normal' is pretty meaningless when it comes to thyroid, and all that entails. It just means 'in-range'. And, as the ranges are so wide, it's always best to give the actual numbers - results and ranges - than someone's opinion of 'fine' or 'normal'. 
i just had a very quick look on your profile ( my daughter is hypo too and i know it’s worrying). has your daughter been tested for autoimmune thyroid disease? would you consider getting a set of private bloods, i use thriva and for £75-80 we get full thyroid including free t3 and antibodies plus iron, liver, inflammation, vitamin d, folate ferritin & b12. i like having them because i know where her ‘normal is’.i saw you said your daughter swung high on her free t4 and she has skin conditions, i have autoimmune thyroid & have had a lifetime of eczema plus swinging levels when a teen.
Yes I have considered a private test but I think she is still too young to have it done? Tbf I did look into this when she was 14 so she might be allowed it now she's 16.Her levels started going crazy about 5 years a go and have never been right since! Before that they were within range. It's all very confusing!
The only way I can describe her skin condition is like prickly chicken skin. I'll post a picture of it later.
Thank you for your advice, I will look at Thriva and see if she's allowed it now 😊
Vanessa09,
Your daughters thyroid hormones levels are low. I am glad her dose has been increased.
Folate and ferritin levels are woefully low. Is your daughter supplementing anything else but Vit D? Gut absorption issues due to low stomach acid are a common result of long term insufficient thyroid hormone.
Those hugely elevated TSH results don’t make sense if your daughter is functioning ok. Is she under a specialist?
How much functioning thyroid gland has she got or is there not any?
Has she been investigated for a thyrotropinoma (pituitory tumor)?
Can you ask for the tests to be repeated by another lab using a different method for analysis as this would eliminate TSH assay interference?
Hiya
Those vitamin levels are all very low (even if in range!) vitamin d is likely to be low too so would get that tested. Once vitamin levels improve levo is often more effective.
I think blue horizon will test under 18 year olds. bluehorizonbloodtests.co.uk...
Blood test results, can anyone explain them all
Can anyone explain these test results?
Can anyone help with results please?
Anyone taking Adrenavive who can explain this result?
