Endo appointment today

[MariaStrawCinar]

Hi

I just spoke to the endocrinologist who has said I been more Levo to feel better. I am on 125 at the moment and when I tried to raise to 150 I get an adrenaline rushing feeling for either 30 secs or a few minutes in that day I have raised. She told me it was psychological but it can’t be as it happened when I raised in March and just on Saturday the first day I tried to raise it happened.

My TSH is 36 it was in its 90’s a few months ago in hospital she said the surgery would not have had anything to do with it going up ams my T4 is in range so it means I’m converting ( is that right?)

She has a limited number of patients on T4/T3 combination and says I need to increase to feel optimal.

I asked about splitting the dose but she did not advise this

Does anyone bite a 25 in half successfully maybe I can raise to 137 so half of 25 and see if it helps.

Any reflections or personal experience welcome here.

I will start chemo soon and need to have my thyroid optimal for that scary Mary adventure !!!

Many thanks

Maria

[Loxo]

When I had these same symptoms I could not get answers. When I got my ferritin and iron saturation up and was no longer microcytic then this surge disappeared. It was affecting me in much smaller dosage, though. At first we would go down and try giving me thyroid very little changes starting at half lowest dose. It did not matter. Though. Still there was surge until iron came on board. Also, too high a dose could cause this in me.

[MariaStrawCinar in reply to Loxo]

Thanks Loxo I should start taking my Floridux again. How do you take your iron? A pill ?

[Loxo in reply to MariaStrawCinar]

I took iron pill on and off for years but I would stop because I already had profound constipation (2 times a month even with mirapex, fiber etc). I could never raise it much. After many years of trying I was offered iron infusion. I had 2 of them in one month. I would be cautious though because it can cause hypophosphatemia in some people. I am likely low again after several years and might try pills again. I hear it is just as good or even better if every other day as it is every day. I have to test first though and need new doctor.

[Loxo]

Keep in mind that iron is dangerous if you do not need it so it is best if you test first.

[SlowDragon Administrator]

When were vitamin D, folate, ferritin and B12 last tested

What vitamin supplements are you currently taking

Please add most recent vitamin results and ranges

Essential to test TSH, Ft4 and Ft3 together

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Looking at previous posts, you recently changed to Aristo levothyroxine. Is this better or worse than what you had previously

Have you tried cutting tablets and taking half dose am and half dose at bedtime

Endocrinologist could trial liquid levothyroxine

Many people find this better option if struggling to tolerate high enough dose levothyroxine

Are you taking levothyroxine on its own, on empty stomach and then nothing apart from water for at least an hour after

No other medications or supplements within 2 hours minimum

Some like iron, vitamin D, magnesium or calcium must be minimum 4 hours away from levothyroxine

[MariaStrawCinar in reply to SlowDragon]

Thanks for your reply. I went back to Accord but I have been sent Aristo so maybe should use that one.

I have some liquid thyroxine here but not sure if I can mix liquid and pills together.

I will take Vit D later and ask for my levels.

I could try 25 at bedtime but Endo said it would not be a good idea as they have 75 hour life - not sure what she meant… if I took it at night would it keep me awake ?

[SlowDragon Administrator in reply to MariaStrawCinar]

Get a craft scalpel or pill cutter to cut levothyroxine tablets

How much vitamin D are you currently taking

When was vitamin D last tested

Presumably you have ongoing issues with iron

medichecks.com/products/iro...

Have you had coeliac blood test done

Gluten intolerance is frequently cause of vitamin deficiencies

Come back with new post once you get vitamin results

[MariaStrawCinar in reply to SlowDragon]

I am gluten free not had celiac test

[Lalatoot in reply to MariaStrawCinar]

The endo's mouth was mis-speaking when she said that. I have always split my dose - on the advice of an endocrinologist, I must add - as I felt the effects of all the levo in one go.I take it first thing and on going to bed.

Levo is a storage hormone - its half life is 7 days.

[MariaStrawCinar in reply to Lalatoot]

Yes I was surprised when she said the effect is psychological as Levo is a strong drug. I think I will take the other 25 at night. Did it help you ?

[Mlinde in reply to MariaStrawCinar]

Point of fact; Levo is a synthetic hormone, not a drug

[tattybogle in reply to MariaStrawCinar]

I could try 25 at bedtime but Endo said it would not be a good idea as they have 75 hour life - not sure what she meant…

Whoever said this to you was having a really bad day for 'getting things wrong'

~Levothyroxine has a 7 day half life .

~There is written NHS information (somewhere) saying 'taking Levothyroxine dose at bedtime might suit some people better.'

~ Increasing dose more gradually rather than adding full 25mcg all on one go makes perfect sense ..... even if she doesn't think it's necessary...it certainly won't do any harm . You could either take the extra 25mcg tablet every other day, or cut (or bite ) it in half to get 12.5mcg ..... i usually bite mine to be honest .

Are you SURE it was an Endo you talked to .. not just someone who'd sneaked in to play lunchtime bingo on her computer ?

[MariaStrawCinar in reply to tattybogle]

It makes the mind boggle why they won’t look at the whole picture. It’s so frustrating! I think I may try halving the 25 at first to get used to it .How much do you take ? Do you feel optimal now ?

[MariaStrawCinar]

Thanks Loxo Floridux is a liquid iron that usually works well. I needed a transfusion in hospital last November as was anaemic buy yes important to get tested

[SlowDragon Administrator in reply to MariaStrawCinar]

Are you vegetarian or vegan

Are you eating iron rich foods regularly to try to maintain optimal iron/ferritin

Vitamin D is that 1000iu or 10,000iu

Either way you need to test vitamin D twice year

When were folate and B12 test

Are you taking any B vitamin

[MariaStrawCinar]

Thanks I’ve usually got low iron when tested I take 10000 vit D

I just found I still have liquid thyroxine 25 micro grams could I take that at night and 125 mgs pills in the morning ?

I will post again with vitamin and iron results

X

[MariaStrawCinar]

Not vegan or veggie I’ve been craving meat in fact.10000

I don’t take B vits but Floridux is a mixture of iron and B vitamins

[greygoose in reply to MariaStrawCinar]

Oh, that's not good! The iron will block the absorption of the B vitamins - it blocks the absorption of all vitamins except vit C. Iron should be take two hours away from all other supplements - except vit C - and four hours away from thyroid hormone.

My TSH is 36 it was in its 90’s a few months ago in hospital she said the surgery would not have had anything to do with it going up ams my T4 is in range so it means I’m converting ( is that right?)

Oh, dear! She was confused. This is another mistake on top of all the others already mentioned. She really doesn't know much about thyroid, does she!

T4 may be 'in-range', but where in-range? If your TSH is 36, it's probably very low in-range and not at all in the right place for you. And, probably not converting very well at all. Which is what one would expect after surgery. Being unwell for any reason will negatively affect conversion. I suppose she does know that T4 converts to T3, and not the other way round? That is all so jumbled up, it's difficult to untangle! lol

Have you had full thyroid testing? TSH, FT4 AND FT3? If not, it's difficult to know what's going on. You cannot tell how well you convert just by looking at one number.

[MariaStrawCinar in reply to greygoose]

The T4 was 16 but I couldn’t see the range - will get it printed out. She was v cavalier about high TSH and sure that as my body has been under medicated for so long a higher dose will do the trick. She then was telling me a metaphor about hot climates and cold climates and temperature but I wasn’t sure of the connection to thyroid and my body. It really is a minefield and it’s such a shame it’s not treated properly by experts in the field.

[greygoose in reply to MariaStrawCinar]

Well, if the range is the one we often see on here - 12-22 - they she's probably right, you do need a higher dose. But, that won't tell you how well you convert. You absolutely need the FT3 tested.

I think the truth of the matter is, there are no experts in the field. None of them know much, but some - like yours - know just about nothing at all. They just don't learn about it in med school.

[MariaStrawCinar in reply to greygoose]

I couldn’t get enough blood for the last medi check finger prick tests. Do they offer a service where they come and take blood ? Any of them - I’m sure I saw it somewhere

[Mlinde in reply to MariaStrawCinar]

I just went through this with my Blue Horizon Silver test, I couldn't get enough blood out, so they sent me another test pack. You can get tested 2 ways, first, do it yourself (microtainer) or have it drawn (vacutainer) but who knows where/who to get it done?

[Batty1]

Use a pill cutter to cut the pill in half .. lots of people including me split their dose.

[MariaStrawCinar in reply to Batty1]

Thanks will do