I’ve had an underactive thyroid for 8 years and been taking 75mg of levothyroxine for the past 2 or 3 years. About 6 months ago this was reduced to 50mg and about 2 months later I discovered a lump on my neck. I was told this was due to overmedicating and I should stop taking thyroxine totally. I was told my thyroid was now hyper. Last week I had more blood tests and the results were as follows:- T3 12.6 pmol/L serum TSH 0.01 mu/L serum free T4 20.7 pmol/L I’m feeling pretty rubbish - anxious, hair falling out, tired, overly sensitive to heat. I’ve also developed a tremor in my hands which is worse in the morning. Do I now have hyperthyroidism? Has anyone experienced anything similar? We’re you given any treatment?
Thank you 😊
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Fizz70
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Hi thanks for replying. Yes I stopped medication 2 months ago. My T3 levels were 4.7 in October 11.8 in June and then 12.6 in August. My T4 levels were 11.9 in Oct, 23.8 in June then 20.7 in Aug. My TSH levels were 0.13 in Oct, 0.01 in June and 0.01 in Aug.
I’ve had an ultrasound on my thyroid and told it looks swollen and angry but there are no nodules. I haven’t heard anything from my doctor following my last test results I was able to get the results in the patient access app. I’ve just been able to book a telephone appointment with the doctor at end of the month but I’d really like to know what questions I should be asking. Thanks.
Sounds to me as if you have Autoimmune Thyroiditis - aka Hashi's. Have your antibodies been tested? If not, the first question you should ask is: can I have them tested, please? You cannot go from hypo - which you were! - to hyper. It doesn't work like that. Either you are over-medicated or you have Hashi's. And, as you haven't taken any thyroid hormone for two months, that rules out over-medication!
I would 100% follow advice given to test antibodies. I was diagnosed hyperthyroid with Graves, but after following advice here to test antibodies, tests clearly showed I was hypo with Hashimotos. If your GP is reluctant to test & you can afford the cost you can do this privately (eg using Medichecks which are discounted today/ see an earlier post for link). I’m so glad I tested privately & posted results on the forum, as I was able to challenge my diagnosis & get the correct treatment.
Also absolutely essential to test vitamin D, folate, ferritin and B12
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for autoimmune thyroid disease also called Hashimoto’s
Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
Thank you so much for all your help. I’ve always had the same brand of levothyroxine. I am vegetarian and I don’t currently take any supplements so I do wonder whether my iron levels are high enough.
The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3
And test iron and ferritin regularly at least annually
Full iron panel test via Medichecks if GP won’t
If you need to supplement iron you need to retest 3-4 times a year
Come back with new post once you get results
Aiming for optimal vitamin levels
Vitamin D at least around 80nmol and around 100nmol maybe better
Serum B12 at least over 500
Active B12 at least over 70
Folate and ferritin at least half way through range
I had a similar experience but was asked to continue my medicatation. My swelling did go away on it's own after 4 or 5 months. I did stop levo for a 14 days and found my weight increasing and other hypo symptoms. I resumed my levo and feeling better. Like greygoose mentioned it can be Hashis Thyroiditis even if you are borderline. Hope this helpsMy gp alarmed me and said it was cancer and upon scan after a good while, all is well.
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