Drs advice - no thyroxine : So, at drs earlier... - Thyroid UK

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Drs advice - no thyroxine

StormIstalri profile image
8 Replies

So, at drs earlier this week and he said I'm very overmedicated. TSH was 0.01 and is now less than 0.01. All other results fine apparently (although I am going to get a print out when I go back).

Dr has suggested no thyroxine for about 10 days to see if my levels improve. Blood test after a week of no thyroxine then a phone call two days later to decide on next steps after looking at results. He says I should be fine but to ring if I feel otherwise.

So my question is, do you think this will work? I'm not too worried as I was terrible at taking my thyroxine in the past and would often forget to take it for up to a week at a time.

Im on day 3 of no thyroxine and I do feel tired but was woken in the middle of the night last night and couldn't get back to sleep.

Thanks

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8 Replies
Nanaedake profile image
Nanaedake

I think you said in a previous post that you have no thyroid. What is your target TSH level? Have you been supplementing with vitamins? Sometimes Levothyroxine works much better when your vitamins are optimal and you can then lower your dose.

StormIstalri profile image
StormIstalri in reply toNanaedake

That's correct - no thyroid.

I haven't been given a target TSH level - I'll ask dr next time I speak to him.

I had all the relevant tests done as recommended on here (cut D, B12, ferritin and folate) but all apparently fine.

However I will be getting a print out of these to check when I'm back at drs.

I don't take anything in addition to thyroxine. Only change has been going gluten free for last 5-6 weeks due to stomach issues.

waveylines profile image
waveylines

Your doctor is treating you by your TSH. He should treat you by your thyroid hormone levels -blood tests ft4 & ft3. . If they are in range then there is no need to worry about the supressed TSH. Treating by the TSH is known to lead to under medication.

Can you post the blood test results plus ranges ( figures in brackets) what are your signs and symptoms prior to stopping the medication? These can help to indicate whether you are under or over medicated

May I ask why you have no thyroid? Was it removed? If the reason was thyroid cancer then the reccommended approach is to suppress the TSH.

Apologies for all the questions!!

200mcg is considered a full replacement dose, which is what you need, by many endocrinologists. However some people need more or find that levothyroxine which contains t4 only is not enough so end up needing to add t3 in, either by adding liothyroxine or using a natural dessicated thyroid extract.

can you also post up the actual blood test results of ferritin, folate, iron B12? The ranges are wide and many docs will say they are fine when they are low but in range.....this causes symtoms and if treated can really help if the levels are much higher. E.g B12 the Pernicious Anemia Society say everye ones B12 level should be over 500 . However the blood test range goes right down to 180 so many doctors wont say your deficiant until yiur below 180.

You can either ask your doctor for a copy of the blood test results or ask the receptionist at your gp surgery. You have a right to your test results.

I keep a file on my results with the level of meds taken at the time.....can be useful to look back over to see trends.....which can help to find your optimal dose and medication for you.

StormIstalri profile image
StormIstalri in reply towaveylines

Thank you for your reply.

I need to get a copy of my results but I think ft3 & ft4 were at the top of the ranges.

I will post my blood test results when I get a copy from the drs next week. Kicking myself that I didn't get it when I was in that day.

I had symptoms of anxiety/nervousness/stress (but that could be my job!), irritability, weight loss (for the first time in years), itchy skin (at times), still tired and cold at times, no motivation.

Thyroid was removed as I was over active (Graves' disease). I had a racing heart rate, lump in my throat and bulging eye. At the age of 16? when it was diagnosed I just did what my parents and drs said. I didn't want radioactive treatment as I went to uni for teacher training as they made the decision to remove it.

SlowDragon profile image
SlowDragonAdministrator

Going gluten free may have helped gut lining repair and as result improved uptake of thyroid hormones.

You may need to adjust dose down slightly......but only 25mcg max dose change is ever recommended. Reducing dose could even be smaller step by alternating 175mcg and 200mcg if stepping down to 175mcg every day is too much

drknews.com/eating-gluten-i...

Nanaedake profile image
Nanaedake

Slowdragons advice sounds good, maybe you could suggest it to your doc and see what he/she says?

helvella profile image
helvellaAdministrator

This is yet another case of a doctor not knowing what he is doing.

A modest reduction might have been in order. Stopping entirely is not.

Hoxo profile image
Hoxo

Doctor should not be using TSH as a dosing guide, hormone levels free T3&4 and symptoms are what's important. It's ok if your hormone levels are in upper end of range. Shows you were on the right dose. And OK if your TSH is suppressed. Mine's been suppressed for years. Don't stop taking your thyroxine. If your symptoms suggest a lowering of dosage then reduce by 25 mcg and see how you feel. Don't let GP mess you about due to their ignorance. They will make you very unwell as they did me before I took matters into my own hands.

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