She is very under medicated. Has she been on higher dose and/or T3 (Liothyronine)
Presumably she's thin. If so then it seems even harder to get correct treatment.
Medics tend to think we must be fat to be hypo. Many hypos are very thin and struggle to gain weight
Her antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). About 90% of all hypothyroidism in Uk is due to Hashimoto's
With Hashimoto's, our gut can be badly affected. Low stomach acid can lead to poor absorption of vitamins.
Low vitamin levels stop thyroid hormones working.
Essential to test vitamin D, folate, ferritin and B12. Very likely to be too low. Always get actual results and ranges.
Post results when you have them, members can advise
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten
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
You could ask for testing for coeliac, to get them thinking about reason for low vitamins
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
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 articles from Thyroid UK email dionne.fulcher@thyroidUK.org. print it and highlight question 6 to show your doctor.
Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime
Many people find Levothyroxine brands are not interchangeable. Once find a brand that suits, best to make sure to only get that one at each prescription.
All thyroid tests should be done as early as possible in morning and fasting and if taking Levo don't take it in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results
Email Thyroid UK for list of recommended thyroid specialists dionne.fulcher@thyroidUK.org
Or like many may have to self medicate. But with all the national news around T3 we may finally get more recognition of need and serious price reduction
Why has your girlfriend's dose been reduced from 200mcg Levo and 10mcg T3 down to 50mcg levo? What excuse was given for such a drastic, sadistic and massive dose reduction?
I am guessing that her TSH was under the range, she was told she would have a heart attack and develop osteoporosis, and she had to cut her dose dramatically to save her life! But this is nonsense. The dangers of being a little bit overdosed have been massively over-hyped, and doctors have just scared themselves stupid. And I will only believe your girlfriend was massively overdosed if I saw the test results and checked for myself!
What I've just described is common behaviour in endocrinologists.
Any reduction in thyroid meds should be done carefully, not in one massive jump. And the results of dropping dose in massive jumps can be seen in your girlfriend's test results (and no doubt in her symptoms too), with her being severely under-medicated.
The Endo is a sadist. Your girlfriend is very hypothyroid and needs treatment. A lot of people gain weight on Levothyroxine, but doctors are convinced it is the best weight loss drug ever invented.
I think your girlfriend needs to get a second opinion and she should insist on being treated like any other treated hypothyroid patient with a TSH of nearly 10 - she needs a dose increase of 25mcg and then re-testing in 6 weeks time. Then if her TSH is still too high and her Free T4 and Free T3 are still low or low in range then she needs another increase of 25mcg Levo and more testing 6 weeks after that.
It wouldn't surprise me if she needed a dose anywhere between 100mcg and 150mcg per day, but I would think 125mcg might be a reasonable best guess of how much she needs. But she needs her dose increasing a few times and testing before she'll know.
I hope she starts feeling better soon. And get her nutrients levels tested. Once she has results, post them here and we can tell her what to supplement.
These damned doctors want their cake and eat it! They won't believe you're hypo unless you put on weight, but when you do put on weight, they tell you it's nothing to do with your thyroid! If i were a conspiracy theorist, I'd think it's all a huge plot to avoid diagnosing/treating hypos! Wait a minute... I AM a conspiracy theorist!
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.