Not Sure What I Should Do: I've been diagnosed... - Thyroid UK

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Not Sure What I Should Do

HealthyOldPerson profile image
8 Replies

I've been diagnosed with Hashimoto's Thyroiditis and I currently take Levothyroxine. Previously I took Levothyroxine and Levothyronine. My current Endocrinologist only believes in testing the Free T4 and the TSH. She won't take any other tests. The nurse from my GPs office looked for another Endocrinologist who believes in taking all the other tests and couldn't find one. So I'm stuck with my current doctor. I was on 125 mcg of Levothyroxine and she has steadily lowered it because my TSH is low. I'm now on 75 mcg. My May 14th test results: T4 Free 1.28 (Reference range: [0.76-1.46]) TSH results 0.010 (Reference range: [0.358-3.740]). My understanding is if a person has Hashimoto's, lab results can swing between hypo and hyper.

Thirty-two years ago I had a doctor totally take me off of my thyroid medication for 3 years (before I was diagnosed with Hashimoto's). That resulted in a dangerously low drop in my thyroid level. I changed doctors and the new doctor gave me radioactive iodine to reduce the nodules that had formed on each side of my thyroid then put me back on my thyroid medication.

I'm very concerned that my present doctor is also going to take me off of my thyroid medication. If I can find another doctor that believes in taking all thyroid tests, the closest one will be 2 and 1/2 hours one way. At this point, I have no idea what to do and I'm open for suggestions. Thank you.

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8 Replies
shaws profile image
shawsAdministrator

Welcome to our forum and am sorry you have hypothyroidism for more than 30 years and are still not happy and also that you are probably not being given the optimum dose of thyroid hormone replacements you need or require.

Once we are diagnosed as hypothyroidism or have had a thyroidectomy, our dose of levothyroxine (or NDTs = natural dessicated thyroid hormones) should be sufficient to allow our TSH to be 1 or lower and Free T4 and Free T3 towards the upper part of the ranges. Best of all our clinical symptoms should be relieved and we feel well.

I am aware the 'frees' are rarely tested' but it gives a better picture of the person's hormone levels in the blood.

Most of all our vitamins/minerals should be optimum too, i.e. B12, Vit D, iron, ferritin and folate and request these at your next blood draw.

Your dose of thyroid hormones should be sufficient to relieve all your symptoms.

This is the procedure to follow when having a blood draw for thyroid hormones:-

1. Make the earliest possible blood test.

2. It is a fasting test (you can drink water) and allow a gap of 24 hours between your last dose of thyroid hormones and the test and take it afterwards.

3. Request: TSH, T4, T3, Free T4, Free T3 and thyroid antibodies.

4. Always get a print-out of your results, with the ranges and put them on a new post - if you wish - for fresh comments.

The 'frees' are important but rarely tested.

5. Also request B12, Vit D, iron, ferritin and folate - everything has to be optimal.

Few of the medical professionals seem to be aware of how best to restore our health and wellbeing as they seem to only look at 'numbers'. Rarely are they aware of the clinical symptoms when the patient is taking thyroid hormones. Medication is supposed to relieve all symptoms.

Once we are diagnosed with a dysfunctional thyroid gland, be it hypothyroid, hashimoto's (due to having antibodies in blood) hyperthyroidism, we need lifelong treatment.

HealthyOldPerson profile image
HealthyOldPerson in reply toshaws

Thank you for responding. You've provided me with great information.

greygoose profile image
greygoose

I'm not quite sure how things work in the US, but do you actually need to see an endo? Can't your GP handle your treatment? Sounds like your endo is so ignorant she's going to make you worse rather than better, so you'd be better off without her! Personally, I'd rather self-treat than be at the mercy of a butcher like that. Oh, wait a minute! I do! :)

HealthyOldPerson profile image
HealthyOldPerson in reply togreygoose

I need to look into self-treating. Thanks for the suggestion. FYI most endocrinologists that I've been to over the years will only look at TSH. Even Mayo Clinic teaches the doctors to only look at TSH and that's what Mayo Clinic physicians do.

greygoose profile image
greygoose in reply toHealthyOldPerson

Yes, I had heard that. Rediculous, isn't it!

shaws profile image
shawsAdministrator

Many members on this forum source their own thyroid hormones and also get their blood tests.

They post results with the 'ranges' too and having ranges enables members to respond.

We also have to ensure that our vitamins/minerals are optimal too. Usually when we're on an optimum dose our symptoms also resolve. They are B12, Vit D, iron, ferritin and folate. The aim is a TSH of 1 or lower.

HealthyOldPerson profile image
HealthyOldPerson in reply toshaws

Thank you for your reply. Good to know about the vitamins/minerals.

SlowDragon profile image
SlowDragonAdministrator

Lots of leading thyroid specialists are based in USA

Look at USA based websites

Hypothyroid mom

Thyroid pharmacist

Chris Kresser

Susan Blum

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