I'm here on behalf of daughter, she stopped taking her levothyroxine a day ago because she doesn't think she needs it. She is 29 years old and diagnosed hypothyroid in January 2014. Anything I can do to talk her out of not taking her medication?
Thanks
(50mcg levothyroxine)
TSH *5.3 mIU/L (0.2 - 4.2)
Free T4 13.1 pmol/L (12 - 22)
Perhaps you could ask her to show you her blood test results to convince you she doesn't need it because you're so conderned about her heatlh? You need her help to put your mind at rest.
She can get a copy of the results from her surgery but make sure it has the laboratory ranges along with the blood test results.
Scientific evidence would clarify things.
I see you've added the blood test results. Perhaps she's feeling well and therefore dosen't see the need for thyroid meds? Or on the other hand she may still be feeling unwell as she is undermedicated and therefore still feeling unwell she thinks there's no point in taking the medication?
In that case she needs to increase her dose.
No she has hyper symptoms
So, does she have thyroid antibodies? If so, they may be active at the moment.
Thanks she has had thyroid receptor antibodies checked which were negative
What about TPO and Thyroglobulin?
They haven't been checked.
Well, then they need testing. NHS might only do TPO. If she has TPO and TgAb antibodies then it means she has Hashimotos thyroiditis as you probably already know. This means the antibodies might fluctuate and cause times of thyroid overactivity.
If this is the case, it might be that your daughter needs to drop thyroid meds by 25mcg until the flare up has settled down and then resume the previous dose.
If you get TPO and TgAb checked you will know if this is the case or not. Thyroid UK website list reliable online labs that can do the tests if GP will not but try GP first.
She is very under medicated. Dose should be high enough to bring a TSH down to around one, FT4 towards top of range, not right at the bottom of range as it is now
Strongly suspect she has very low vitamin levels
Any recent test results for vitamin D, folate, ferritin and B12
Post results and ranges if you have them
Does she also have high antibodies?
This is Hashimoto's also called autoimmune thyroid disease.
Stopping her Levo can make her feel very unwell indeed
She feels so ill because she is not on high enough dose
She should see GP asap and ask for 25mcg dose increase, retesting after 6-8 weeks on higher dose. Likely to need further increases
Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,
"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.
In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.
But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.
This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."
You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor.
For full evaluation you need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested
If you can't get full thyroid and vitamin testing from GP
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Email Louise at a Thyroid UK for list of recommended thyroid specialists louise.roberts@thyroiduk.org.uk
Antibodies for TPO and TG have never been checked. Only thyroid receptor antibodies which were negative. She also has pernicious anemia and folate deficiency and iron deficiency
Thanks
Post results for B12, Folate and ferritin
Likely not on enough supplements. We see hundreds come here on inadequate vitamin supplements, and/or inadequate dose
Has she been tested for coeliac, if not it should be considered
Vitamin D been tested?
With Hashimoto's, until it's under control, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins. Low vitamin levels stop thyroid hormones working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
Not gut symptoms required
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood
Changing to a strictly gluten free diet may help reduce symptoms and help gut heal
thyroidpharmacist.com/artic...
thyroidpharmacist.com/artic...
amymyersmd.com/2017/02/3-im...
chriskresser.com/the-gluten...
scdlifestyle.com/2014/08/th...
drknews.com/changing-your-d...
Low stomach acid can be an issue
Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL
thyroidpharmacist.com/artic...
drmyhill.co.uk/wiki/hypochl...
scdlifestyle.com/2012/03/3-...
Other things to help heal gut lining
Bone broth
thyroidpharmacist.com/artic...
Probiotics
carolinasthyroidinstitute.c...
Thanks not tested for coeliac
Less likely to be coeliac, most likely gluten intolerant.
Up to you if want to insist on coeliac testing and remain on high gluten diet until endoscopy or go gluten free straight away
Endoscopy can check for gut infections like h Pylori too
Why does her doctor think vitamins so bad. They should have suggested this long ago
But gut function is so bad because Thyroid treatment has been totally inadequate
Sorry forgot to mention she is D deficient
for the h pylori test - no need for endoscopy. you can do the stool test through a private company they turn around the information in 4 days, alternatively ask the GP for test. they will do breath test. they wont do it from my experience without symptoms. symptoms that I had - burning pain went away when ate, kept me awake at night. in left side around lower left rib. was getting progressively worse over 2 years. started to burp after eating or noticed it more anyway. also flatulence and constipation.
I would definitely suggest anyone to get it done. simply easy straight forward. privately with the stool test and eventually when the gp listens. treatment works quite quickly too.
if she has it, I would suggest mastic gum 6 tablets 3 times a day and probiotics along with the antibiotic treatment the dr gives. I haven't really had any of that pain since. and am clear of it 6 weeks later.
hpylori makes you deficient in all those vitamins, iron b12 it causes pernicious anemia the whole lot.
Ferritin 20 ng/L (15 - 150)
Folate 4.3 ng/L (4.6 - 18.7)
Vitamin D 30.3 nmol/L
Vitamin B12 225 pg/L (190 - 900)
Taking 5mg folic acid, 800iu D3 and ferrous fumarate
See SeasideSusie vitamin replies to similar
healthunlocked.com/thyroidu...
Vitamins are low BECAUSE she is under medicated on Levo
Strictly gluten free diet likely to help heal gut too
Can she see different GP
This one is useless
The difference between hyper and hypo can be really hard to establish.
She needs it. Tell her I said so :/
She was on too low a dose and probably felt it wasnt doing anything. She will begin to feel much more unwell with no meds. By the way my kids don't listen to me either
Let her read a bit about the history of thyroid medication and what happened to people with myxoedema before it was discovered, with images. Here's one article: jameslindlibrary.org/articl...
Worried about endo appointment
Worried about symptoms 
Worried Daughter is hypothyroid too
Worried about over-range fT4
Worried about my hubby
