Going against endo s advice

[Piedo]

I had a TT five years ago have been on 100 throxine function reasonable well apart from joint and muscle pain dry eyes and mouth and fatigue .i have my throxine on 6 months repeat from GP usually have blood test before next repeat my TSH has been surpressed about0.01 since I had my TT in June my results were seen by a locum they were TSH 0.01 T 4

18.2(9 - 20) T3 3.9 (2.5 - 5.7) he rang me and wanted me to reduce to 75 I refused so he insisted I was referred to endo .i saw endo in my local hospital although he was very nice and listened to me he then ignored every thing I had said ! He said my T4 and T3 results were irrelevant and it was my tsh result was more important !! Giving me usual talk about AF I argued it wasn't

He then said my symptoms were probably caused by something else not my thyroid

He wanted me to drop to alternate days 100/75 and retest bloods in December

By this point I felt defeated ! I decided to go to drop one day a week as a compromise now 6 weeks later I am not feeling good at all the joint and muscles pain are much worse and I have had dizziness I take Almus 100 but the 75 are 50 wockard and 25 Mercury Palma so that is three different brands could such a small drop make me feel ill?

Can I ignore endos advice? If I do how will I get my 100 throxine as my locum said he would go on endos advice I rarely get to see my own GP these days

Sorry for long post bad day today

Piedo

[SeasideSusie Remembering]

Piedo You have had lots of advice in your previous threads that vitamins and minerals need to be optimal. You were advised what the optimal levels were and what to supplement to get there.

So, what are you supplementing and what dose? What are your current levels of Vit D, B12, Folate and Ferritin? I believe your current aches and pains and dizziness are still down to low levels.

Thyroid hormone can't work unless nutrient levels are optimal.

You also know that your conversion is poor and that it was suggested you need T3. You said 8 months ago that your son had sourced you a year's supply of T3 and your results show that you've not started taking it.

You have been asking almost the same questions for 5 years now, have been mentioning joint and muscle pains for the same length of time.

It's up to you whether you ignore the endo's advice, it's your decision alone.

You have to decide what you want to do - follow the suggestions that members have given you, or continue to allow your doctors to keep you this unwell.

[Piedo in reply to SeasideSusie]

Thank you for your reply I have been supplementing vit d 2500 b12 1000 selenium magnesium for last 5 months due for blood test in December I felt an improvement until I dropped throxine to 75 one day a week

Sorry that you feel my questions not relevant due to previous posts I consider myself well and true truly told off and won t be submitting anymore posts

Piedo

[SlowDragon Administrator in reply to Piedo]

How long since dose reduced

If it's 6 weeks, go to GP and ask for blood test to recheck as you feel much worse

Say you don't get on with different brands

Ask for vitamin D, folate, ferritin and B12 to be tested

Definitely different brands not good idea

TSH is irrelevant when on Levo, FT3 and FT4 are the ones to check and your FT3 was too low before dose reduction - probably worse now

All blood tests should be done as early as possible in morning and fasting and don't take any Levo in the 24 hours prior to test.

If GP refuses then do Medichecks test

With Vitamin B12 it's good idea to also take vitamin B complex

But essential to remember to stop taking this 3-5 days before any future blood tests as biotin can falsely affect test results

endocrinenews.endocrine.org...

[SeasideSusie Remembering in reply to Piedo]

Piedo It isn't a case of being told off, it's a case of most of your posts have said exactly the same thing, you have been given good advice and suggestions of how to help yourself, and then later on you come back and say the same thing again. That can only translate as you not taking any notice of what anyone has said to you, and things can't get better if you don't help yourself. We can only keep repeating the same advice.

Your reduction of Levo is 25mcg per week. Previously you were getting 700mcg a week, now you're getting 675mcg, which averages 3.5mcg Levo less per day. That is such a small difference that it shouldn't cause your joint and muscle pains to worsen and to cause dizziness. Those are very likely due to inadequate nutrient levels.

With B12 at 241 in February, did you start with 5000mcg melthylcobalamin daily as suggested?. And with a Vit D level of 33 you were only 3 points away from the guidelines stating you need loading doses. You were advised to take 5000iu daily then retest in the Spring to see if you had reached the recommended level of 100-150nmol/L and once you had you could reduce the dose. Did you do that?

And as SlowDragon has mentioned, three different brands of Levo isn't a good idea, you should ask to take one brand only.

[Clutter]

Piedo,

It's unlikely that reducing 25mcg 1 day per week will make you feel unwell. Try taking 3 x 75mcg Wockhardt for a couple of weeks instead of the 25mcg Mercury Pharma and see whether that makes a difference. Then try 3 x 25mcg Mercury Pharma instead of Wockhardt. Keep a daily symptoms diary. If you feel better on Wockhardt vs Mercury Pharma or vice versa tell your pharmacist that is the 25mcg you require. There's no reason to dispense you two different 25mcg doses.

If neither makes any difference and you still feel better on 100mcg daily stick with that. I don't think it is good doctoring to dose by TSH and ignore FT4 and FT3 and would want to see a different endo. If your endo's regime is not helping you there doesn't seem much point in following it.

If you weren't feeling well on 100mcg Levothyroxine you might want to add a quarter tablet (6.25mcg) T3 to raise your FT3 but it will further suppress your TSH.