I was diagnosed with Thyroid Cancer October 2024 and had total thyroid removal November 2024. However, results came back with no cancer.
They put me on Levyothroxine 125 and felt okay.
however, they said too much TSH (0.02, below low threshhold), Free Thyroxine is 1.590 (above high threshold). They had me move down to 112 levyothroxine and I began having severe depression, cold intolerance, headache, joint pain, . I have gotten so depressed hard to get out of bed or do anything.
I work for a living and everyone keeps asking what is wrong.
Has anyone else had this problem?
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LikeRuth
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I’m so sorry that you are experiencing adverse symptoms. We are a friendly and supportive group and are here to help!
So we can offer better advice, can you add more details of blood test results (ie add ranges in brackets after results- as these can vary between laboratories)
TSH 0.02
FT4 1.59
FT3 (any results?)
Have you had any key vitamin tests (ferritin, folate, vitamins D and B12)
In the first instance, do ask your GP for the above tests. We don’t recommend supplementing key vitamins without testing first (and sharing results with us).
If your GP is unable to complete all the above (eg if TSH is within range, some surgeries may not be able to access FT4 and FT3 tests), you could look to do this privately, as many forum members do, for a better picture of your thyroid health:
Sounds like you still need more help from endocrinology to find the right treatment and dosage. My mood and concentration levels are poor when I don't have a high enough dose of Levothyroxine.
My endocrinologist advised me that calcium and vitamin tablets should be taken at the opposite end of the day to Levothyroxine.
Also, you should take your Levothyroxine ideally an hour before food with plenty of water, not coffee.
Coffee, tea, calcium and iron can affect the efficacy of Levothyroxine, especially if taken at the same time.
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before ALL BLOOD TESTS , as biotin can falsely affect test results
In days before blood test, when you stop vitamin B complex, you might want to consider taking a separate folate supplement (eg Jarrow methyl folate 400mcg) and continue separate B12 if last test result serum B12 was below 500 or active B12 (private test) under 70
I take my levyothroxine at 2:30 am on empty stomach.
I do take biotin and was not told that it affected the test. So I have taken biotin and calcium every morning about 7am with coffee and then go and take blood test.
Sorry, but how the heck can they make such an error as to misdiagnose thyroid cancer? Is this a standard approach of remove the thyroid and then decide if it's cancer or not? That is horrendous.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mg.
T3 is the active hormone that runs the body - much like fuel runs a car and said to be around 4 x more powerful than T4 -Levothyroxine.
T4 - is a pro-hormone and needs to be converted in your body into T3 -
and optimal absorption and conversion of T4 into T3 - needs optimal levels of the core strength vitamins and minerals maintained - ferritin, folate, B12 and vitamin D.
The thyroid is a major gland responsible for full body synchronisation of your physicality through to your mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
There are 3 main treatment options and the NHS starts everyone on synthetic T4 - Levothyroxine -
which is the cheapest and most easily managed option and said to work for around 80% of all who take it and treatment for those without a thyroid and Primary Hypothyroid is no different to treatment to those who still have a thyroid.
Some find that at some point in time T4 alone doesn't seem to work as well as it once did and that by adding in a little T3 probably at a similar dose to that their thyroid once supported them with they are able to restore thyroidal balance of T3 / T4 and feel improved.
Others can't tolerate T4 at all and need to take synthetic T3 - Liothyronine only.
Whilst others find their health improved taking Natural Desiccated Thyroid which is the original treatment for hypothyroidism and contains all the same known hormones as that of the human thyroid gland. NDT is derived from pig thyroids, dried and ground down into a powder, medically graded, and then made up into tablets and capsules which each tablet containing a declared content value of both T3 and T4 thyroid hormones.
At the turn of the century all 3 treatment options were freely available from your primary care provider should T4 not restore your health and well being and currently Levothyroxine is all your doctor can prescribe with anti depressants as a second line option and you need a referral to an endocrinologist to be ' assessed ' as to your need for any other treatment option.
NDT is the most expensive treatment option and has now been Blacklisted by the NHS for new patients and T3 - Liothyronine - has become something of a post code lottery with some ICB areas placing financial restrictions on hospitals resulting in some endocrinology departments constrained and not meeting the medical needs of their patients.
Obviously if you can afford to go Privately - you will find a very different ' landscape '
and suggest you first contact Thyroid Uk - thyroiduk.org and start reading up on ' all things thyroid ' and complete the form asking that Thyroid UK send you the Patient to Patient Recommended List of supportive thyroid / endo specialists both NHS and Private.
Welcome to the forum. It took a while (maybe a year) for my levo med to be sorted correctly following my RAI. I'm now on 125/100 on alternate days and I weight 62kg. Are your calcium levels ok as the parathyroid can be damaged during surgery?
I have been 20 years post op but with thyroid cancer - my TSH has been low all that time - it’s only now they are trying to reduce my Levothyroxine - I went down to 112.5 mcg it was horrendous - I have been trying to put together all the research about TSH because the issue they have is TSH too low means osteoporosis & heart issues?
So far my research has many papers internationally that state the TSH in people with no thyroid is not an indicator of anything unless the pituitary and other related organs are affected !!
Sorry I have no definitive answer yet but I decided years ago I would control my dosage and make decisions and the medical staff have to work with me not be patriarchal and think they know my symptoms - keep going - and go back to them ask for email address or telephone don’t wait for face to face appts.
surely if you don’t have a thyroid no amount of T4 will enable conversion into T3? Surely those of us who have had our thyroid removed need to be treated with T4and T3?
I am 35 years post surgery and still feel like I’m living half a life, so many battles with so many doctors and endocrinologists, I’m completely worn down now. My levels are ‘within range’ so it’s a case of go away and shut up.
I read this forum avidly and follow all of the advised protocols, I have just wasted another £1,000 with a private gp same blood test, same responses,
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