New results and impending endo chat

[Murphysmum]

Hi, so I’ve posted quite a few times recently to get people’s thoughts on my juggling T3 doses. I decided to bite bullet and do bloods to see where I was.

I also had a call from my gp last week refusing to prescribe any more T3 until I see my private endo as he doesn’t understand what I’m doing and is concerned I’ve gone rogue! (So I may have slightly but most of us here have, right?)

Recent back story: crept slowly up to 60mcg T3 before dropping levo. Felt great for a few weeks but then reintroduced 25mcg levo and began to drop T3.

These bloods are on 45mcg T3 split and 25mcg levo but I’ve only been taking this for around 3 weeks so I’m aware levo may creep up a little.

Only thing that worries me is endo didn’t like the TSH when I saw her last April. Then it was 0.02. Now (and in between) it’s 0.006.... she’s not going to be happy. Do I just tell her I’ll take the risk, based on my improving condition? I saw her last when I was taking 10mcg T3, so I’m worried she may flip anyway but as I can give her the history of how I got here, combined with my bloods being ok, hopefully that’ll be ok 😬

Dropping the T3 has helped my muscle weakness but I still struggle a bit with head/neck pressure on any kind of exertion... as this has happened before I ever became unwell I’m assuming it’s a low T4 thing but as I definitely feel better with less T4 in my system this is something I’m going to have to play with.

My gut feeling is i need 50mcg T3... thoughts on this also?

Thank you - every time I get a settled period I think I’m nearly there, a few weeks later it goes pear-shaped again. 🤞🏻 this time!

[SlowDragon Administrator]

What are your vitamin levels like?

Some people are fine with low Ft4, for others it’s a problem

Do you wear a Fitbit?

Suggest you take along printed records of resting heart rate

[Murphysmum in reply to SlowDragon]

I’ve got no idea what my vitamin levels are like if I’m honest 😳 although I’ve supplemented almost constantly since my journey on here began, so I’d hope fairly good!

The only one I fear has potential to be low is ferritin - I had problems getting that to rise but have since taken betaine hcl at the same time as my iron, so hopefully that has helped. I should check.

Taking out levo was a revelation for me. I now find I need some, and I think that ‘some’ is a little more than is in my blood just now but not much.

Yes, I wear an Apple Watch so I could provide heart rate records... I think, if I can figure out how to print it! On 40mcg T3 my hr dropped quite a bit, on 45 it seems stable but I’d prefer 50 I think.

I think I’ll wait a bit longer on 45mcg and let the T4 settle first though.

[SlowDragon Administrator in reply to Murphysmum]

Link your watch results to computer and print out resting Heart rate chart. On Fitbit you can have chart show by month, 3 months or year.

Absolutely essential to test vitamin levels at least annually, ideally 2 or 3 times per year

We need optimal vitamin levels for T3 or T4 to work

If your ferritin is low this is likely an important underlying issue

nahypothyroidism.org/deiodi...

Iron deficiency is shown to significantly reduce T4 to T3 conversion, increase reverse T3 levels, and block the thermogenic (metabolism boosting) properties of thyroid hormone (238-242). Thus, iron deficiency, as indicated by an iron saturation below 25 or a ferritin below 70, will result in diminished intracellular T3 levels. Additionally, T4 should not be considered adequate thyroid replacement if iron deficiency is present (238,239,241,242).

Be interesting to see if iron improved on T3 only

Vitamin D at least over 80nmol

Folate at least over ten

B12 at least over 500

Active B12 at least over 70

Ferritin at least half way through range

Are you vegetarian?

[Murphysmum in reply to SlowDragon]

No, I love my meat too much!

Though apparently thats not good for us now either... sigh

[SlowDragon Administrator in reply to Murphysmum]

Getting vitamin levels tested likely next step

Remember to stop taking any vitamin supplements that contain biotin (eg vitamin B complex) a week before ALL blood tests as biotin can falsely affect test results

[Murphysmum in reply to SlowDragon]

Ok, will do.

I must confess I looked at the fuller thyroid test on medichecks and bottled out, opting for the cheaper check!

I may see if the gp will check them for me, saying as he's so concerned for my wellbeing....

[SlowDragon Administrator in reply to Murphysmum]

Unlikely...but you can ask

Vitamin D postal kit

vitamindtest.org.uk

[SlowDragon Administrator in reply to Murphysmum]

Presumably you have hashimoto’s?

Are you gluten free?

[Murphysmum in reply to SlowDragon]

yes and no.

I have tried gluten free but found it didn't help. It did however highlight that I get a "build up" effect from too much bread, pasta etc.

I guess being more aware of this and looking out for it can only help my general health long term, so a useful experiment all the same

[Murphysmum]

I completely agree Lora,

I wasn’t about to get into an argument over the phone with a gp who hasn’t even set eyes on me but I could’ve lectured him at length about ‘going rogue’!

He said they didn’t even have bloods for me for the last few years and when I stated that was because they wouldn’t test for T3, hence they were satisfied there was nothing more wrong than chronic fatigue, I had to do things off my own back, he just muttered and changed the subject.

Honestly, I know a T3 script costs them more but they should actually be thanking me for saving them thousands in examinations for other things, anti depressants, cortisol injections and heaps of other things!

[DippyDame]

My FT3 is well over range because I take a large dose of T3 only ...but, I have a type of Thyroid Hormone Resistance requiring that amount.

TSH really doesn't matter once you introduce exogenous hormones because the pituitary recognises that there is adequate hormone so doesn't send a signal to the thyroid to produce more (signal being TSH) TSH is therefore low.

Medics are trained - wrongly!- to dose by TSH. They abide by "in range" instead of optimal which is what is required for good health.

Did I not give you the link to a relevant paper by diogenes et al?

You know your body better than anyone and if something makes you feel well .....good! Charts, numbers, ranges etc will not alter that...I prefer to trust clinical evaluation.

It's trial and error ....it took me over 18 months to come anywhere close to an optimal dose. The body needs about 6 weeks to adjust to each change of dose - though some do say 2 weeks - but we are all different. Listen to your body.

I suspect you are rushing and adjusting changes a little too quickly, and perhaps confusing your body, because you are desperate to feel better....been there and it doesn't work I'm afraid.

I self medicate and my new GP understands my "rogue" approach so long as I monitor for any negative symptoms....fast heart rate, raised temp, raised BP. Again, some say BP isn't connected but... I check these every morning and write the numbers in my diary.

If you feel confident then ditch the endo who, herself, seems to be struggling..but.if she turns out to be open minded she may work with you as you self medicate. It sounds as if you have prepared a case for doing so.

Good luck

DD

[Murphysmum in reply to DippyDame]

thanks DD.

You did indeed send me that link.

You see, I know about TSH, and I fully understand that once you are taking replacement meds, your pituitary wont make any... I get it!

I don't get why medics don't get it! I thought my endo was great until her parting sentence regarding low TSH and unproven risks.

I have spent the morning collating results and drafting it all into a resume if you will, of my trials with T3/T4 over the year since I saw my endo last. I'm secretly hoping to avoid paying the fee to see her given I feel well (most of the time!) but I hope to prove to her and my gp that I'm not messing about here; I am methodically and carefully adjusting my dose to see what works.

But when even my husband thinks I've gone off on my own mission, what hope do I have?

I can only hope that my endo reads it all and understands this... fingers crossed!

[DippyDame in reply to Murphysmum]

Ooooops! Didn't mean to lecture, I know I'm guilty of doing that.... very sorry!

You sound ready to go, but if the endo doesn't come up trumps you know all is not lost.

Initially, with the support of TUK, I felt the only person I had to prove anything to was myself., initially it was a waste of energy trying to convince the medic naysayers who had no idea how to help me anyway. My new GP gets it! I found if I did mention the T3 debacle to anyone else they looked at me as if I was talking Klingon....so I stopped trying to explain why I felt as I did. A wreak!

Luckily my husband has supported me since day one.....and has nobly coped with my titration mood swings. It's a lot for them to take in...

This mess should not be happening to thyroid patients!

Good luck...my fingers are crossed for you.

[Murphysmum in reply to DippyDame]

Sorry! No, you weren’t lecturing at all.

There’s no italics on my keyboard do the intonation was all wrong!

I meant “I” get it - us TUK peeps get it, how come medics don’t!

So no lecture, just thanks for your reply. Aw, poor hubbys - don’t get me wrong, mine has been great despite this whole thing having a big effect on our relationship. But he did side with the gp and say that I was winging it! 😂

[DippyDame in reply to Murphysmum]

Stick to your guns...nobody else knows how you feel 🤞

[Hidden]

Hey again my friend you know my opinion on this! I'd fiddle with Levo first.

TSH fluctuates so much, after your reduction now it may go the other way again.

Re Endo, depending how you feel about it, I would ask her if she will take full responsibility for you getting bedbound if you were to be dosed by tsh. And maybe bring a printout of recent studies, which confirm tsh is not accurate in therapy.

[Murphysmum in reply to Hidden]

Well I’ve put it to her in my letter that based on my risk of osteoporosis and heart disease when I was poorly, compared to the risk now that I’m active and exercising again, today m betting that I’m probably at less risk of other things now than then.

I’ll take my chances thanks.

My TSH was also suppressed on high doses of levo but that didn’t improve my health

Now it’s a win:win as far as I can see

[Hidden in reply to Murphysmum]

Sorry maybe it's a misunderstanding, you said you were worried Endo will look at tsh, but what I meant is that tsh will change again so she shouldn't be looking at that.

Re Levo, I just meant what you said that you will see how it works between 25-50

I think you know what you're doing anyway