Update again again again!: Hi All, I have to... - Thyroid UK

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Update again again again!

Flippasmile profile image
30 Replies

Hi All,

I have to say I am feeling MUCH better, and I feel we are getting somewhere now! I have ME and Fibro and was going into a flare so the CRP was raised a little. I don't have any vitamins as this was an NHS test, however, I am keeping my finger crossed that we are also getting somewhere on that also, although I have been supplementing iron tablets (away from the Levo), I don't think they are effective. I took these results prior to starting my progesterone this month.

I am now on 150mcg Levo and 37.5 mcg Lio

Here are my results from Tues at 8.15am:

TSH 0.1 mIU/L (0.49 - 4.9) -8.8%

Free T4 (fT4) 12.6 pmol/L (9.1 - 17.6) 41.2%

Free T3 (fT3) 5.4 pmol/L (2.4 - 6) 83.3%

T4:T3 Ratio 2.333 

C-Reactive Protein (CRP) 12 mg/L (0 - 10) 120.0%

Mean cell haemoglobin level  86.9 fL (84 - 102) 16.1%

I feel that I need to increase my t4 some more, to meet the "normal dose" of t3 I also need to reduce that some more, but unsure if I should have my t3 go any lower.

What are your suggestions?

TIA xx

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Flippasmile profile image
Flippasmile
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30 Replies
humanbean profile image
humanbean

I have been supplementing iron tablets (away from the Levo), I don't think they are effective.

Lots of people have problems with absorbing iron.

a) How long have you been supplementing for?

b) Are you testing an iron panel every 2 - 3 months?

c) What supplement are you taking, and at what dose?

Flippasmile profile image
Flippasmile in reply tohumanbean

I have been supplementing Iron for 2 months.

Yes I have been previously testing every 2 months until this time.

I am taking Nutrition Geeks 14mg. But I have a recognised issue with absorption of tablets and have to inject b12 and Folate.

humanbean profile image
humanbean in reply toFlippasmile

Getting iron and ferritin (iron stores) to rise can be a long winded process. I had under range serum iron and very low in range ferritin and it took me nearly two years to raise my ferritin to mid-range. My serum iron stayed low throughout that time.

There are some people on the forum who have reported doing well with a product called three arrows heme iron or something like that.

Search the forum for "three arrows".

healthunlocked.com/thyroidu...

Please be careful with iron supplementing. It is perfectly possible for someone to take iron tablets and for their ferritin to barely move while their serum iron is rocketing upwards. And having lots of free iron in the blood is not a good thing to have.

Alternatively, serum iron can stay low while ferritin rockets upwards, which isn't a good thing either.

So thorough testing with an iron panel is well worth it. I would suggest doing it twice or three times, with a couple of months between the tests so you have an idea how fast your iron and ferritin are rising.

Flippasmile profile image
Flippasmile in reply tohumanbean

I usually do take a panel, unfortunately this month, I had to rely on the NHS as I paid for a private appointment for my partner. I will have to wait until next pay day now but seeing as my haemoglobin is getting lower, I don't think it's have any effect. I wont adjust anything until I have the proper blood test next month.

Flippasmile profile image
Flippasmile in reply tohumanbean

Hi,

I followed the link, and unfortunately they are out of stock, and quite expensive. Which is a shame, There are other "heme" products on amazon that look okay. Is this the type I should be going for, or should I wait?

humanbean profile image
humanbean in reply toFlippasmile

I've never bought or taken heme iron myself. It might be worth asking in a new thread what people's opinions are of the heme iron you've found.

Watamu profile image
Watamu in reply toFlippasmile

just logged on to their website both Heme plus and simply Heme are back in stock. I've been using this for over a month now, previously I was using a different brand.I bought three months supply. Will be having a blood test next week. Hope you feel better soon, altho getting ferritin up can be a slow slog.

jimh111 profile image
jimh111

You are on high doses of hormone. It's possible you will be fine on lower doses in the future as your body repairs the damage done by hypothyroidism. I would try gradually reducing your dose of liothyronine and levothyroxine. You may need these high doses but they are best avoided if you can.

LucyYoga profile image
LucyYoga

Hi,

What do you mean by ‘normal dose’ of T3? 37.5mcg is not an exceptionally high dose of synthetic T3. Most people need their FT3 to be at least 75% through the range to feel well so I certainly wouldn’t be dropping T3 in your shoes. If you are feeling better why reduce T3?

Flippasmile profile image
Flippasmile in reply toLucyYoga

Because it was recommended by an admin on here, that I was previously way above the normal and should reduce it to 20mcg, slowly.

LucyYoga profile image
LucyYoga in reply toFlippasmile

I don’t agree with that.

For researched backed info on T3 dosing check out Paul Robinson ‘recovering withT3’ and ‘the thyroid patients manual’. Obviously you are dosing with T3 and T4 but just as a ball park he recommends - when following T3 mono therapy- that the average daily dose of T3 is sonewhere between 50-80mcg of T3 per day

FancyPants54 profile image
FancyPants54 in reply toLucyYoga

Taking Levo + T3 is very different to T3 mono therapy. I would not expect anyone to need 50mcg T3 with Levo. I have tried 60mcg T3 mono and felt rubbish. No better at all, in fact a lot worse than I am now on 2 + 1/4 + 1/8th grain of NDT.

LucyYoga profile image
LucyYoga in reply toFancyPants54

Sorry T3 monotherapy didn’t work for you - it works for many who cannot tolerate T4 containing medication

tattybogle profile image
tattybogle in reply toFlippasmile

Hi Flippasmile just to clarify ... the advice on previous post didn't exactly say you 'needed to reduce your T3 to 20mcg'.. it suggested you reduce T3 by 5mcg (to 45mcg) and by another 5mcg (to 40mcg) a few wks later, and then retest after 6 wks on that dose.

That advice was due to your fT3 being significantly over range on your previous 50mcg T3 dose .

These new tests show fT3 is now in range on your current 37.5mcg . ( assuming you took this test same as last one~ 12 hrs after last T3./24 hrs after last levo )

 LucyYoga .. you can't really use the average 50-80mcg dose of people taking T3 only as a 'ball park' guide for people taking T3 plus levo.

50 is an unusually large dose of T3 for someone also taking 150mcg levo .. and not surprisingly it was giving flippasmile very over range fT3 results.

Flippasmile profile image
Flippasmile in reply totattybogle

Actually Slow Dragon gave me the recommended dosing as well, with very much the impression that I should aim for that. There was no mention of reduce to 45mncg etc, it was just reduce slowly by 5mcg to that dose and retest in a 6-8 weeks. AND as agreed I would go down by 6.25mcg due to the tablets. I don't really appreciate your comment TBH or your insinuation that I wouldn't test under the same and correct conditions again.

FancyPants54 profile image
FancyPants54 in reply toFlippasmile

That's a bit harsh on Tattybogle. She's very experienced and has good advice. You have to remember that we all need different amounts of T3. Slowdragon, also very experienced and full of good advice, tends to err on the low side because she only needs 15mcg T3 a day, which she takes in 3 doses of 5mcg slit every 8 hours I think. Some people would really struggle with such a small amount. Others need less.

As with all hormones, the advice is always to increase or decrease by the smallest amounts possible so as not to shock the body.

Flippasmile profile image
Flippasmile in reply toFancyPants54

It was quite rude actually, not to mention incorrect. I am happy to discuss opinions and experiences but not rude interjections that do not allow me to speak for myself. Just because someone is experienced and may have good advice doesn't give them cart blanche, That's the problem we have we most the the Dr's now don't we???

tattybogle profile image
tattybogle in reply toFlippasmile

appologies ,i didn't intend that to come across as an insinuation .....asking for confirmation of test timing/conditions is just a question we need to ask whenever the timings aren't stated in a post .. it helps avoid mistakes when interpreting the results that's all.

Might be an idea to clarify with SlowDragon if she really meant you to go down to 20mcg. especially in the light of your current results

Sorry if i've annoyed you .. just trying to help . didn't want you to think you 'have to' go down to 20mcg if you are ok where you are now .

Flippasmile profile image
Flippasmile in reply totattybogle

Thank you tattyboggle. I believe we are all in agreement we should stay where I am as far as t3 goes.

LucyYoga profile image
LucyYoga in reply totattybogle

Tattybogle- I didn’t suggest she take 50mcg of T3. What I actually said was that ‘37.5mcg is not an exceptionally high dose of synthetic T3’.

I clearly caveated to Flipasmile that ‘Obviously you are dosing with T3 and T4’ before explaining what Paul Robinson says about T3 monotherapy.

I too do not appreciate your comment and suggest that you read things more clearly before you jump down people’s throats.

tattybogle profile image
tattybogle in reply toLucyYoga

ok point taken , i seem to be getting up everyone's nose today. sorry Lucy

Zephyrbear profile image
Zephyrbear in reply totattybogle

Not mine Tatty! Always appreciate your input as you’re one of the better ones here!

SarahJane1471 profile image
SarahJane1471 in reply totattybogle

Nah Tatty you’re a star ⭐️

Bearo profile image
Bearo in reply totattybogle

I thought your comments were helpful, as always

TiggerMe profile image
TiggerMeAmbassador in reply totattybogle

This all got a bit wrong footed didn't it 😕

Tatty and   SlowDragon both gave their usual excellent sound advice based on the facts, everyone is different and cautiously finding your way to your optimal dose is done in small adjustments, waiting, stop where you feel sweet.... Slowdragon used the word 'typical' for guidance... no mention of 'normal'? None of us fit that description 😏

Perhaps a quiet Sunday re-read of both posts and all will see that Flip is benefitting and doing well which is great news 🤗

LucyYoga profile image
LucyYoga

Also what are your TGAb and TPOAb? Presumably they are high and are potentially what are contributing to the high level of systemic inflammation as shown in your CRP test?

High levels of antibodies and inflammation can contribute to higher reverse T3. In your shoes if I were going to alter my dose at all I’d be lowering the levo and if necessary increase the T3. But how you feel is the most important. And if you are feeling better why change things

Flippasmile profile image
Flippasmile in reply toLucyYoga

No, they are low. I tested last September prior to meds. What I am thinking and why I asked is could I feel even better. But I know that it takes a long time for the body to recover from hypo, and I was hypo and unmedicated for such a long time, I certainly don't want to boom and bust. But I still have pain and I still have fatigue and muscle weakness, I have just decreased my t3 after going waaay over and feel much better as a consequence. I have put on 14lbs in a month though, without changing my eating habits, so I know something is wrong, Now I am EVEN heavier,

LucyYoga profile image
LucyYoga in reply toFlippasmile

Understood- and glad you feeling better. Strange re the weight gain - I would have thought that happening suddenly is likely due to hashimotos/ antibody flare up. Antibodies aren’t static and can vary wildly depending on lots of factors. My antibodies went from 1500 to 250 in 2 months- granted there were lots of lifestyle interventions I was taking to reduce them, but just because they tested low on September doesn’t mean they will be low now 10 months later.

Flippasmile profile image
Flippasmile in reply toLucyYoga

WOW that's some difference! I will test again next month then. Thanks for the advice.

LucyYoga profile image
LucyYoga

I just think sudden large weight gain without change in diet etc is likely to be inflammation/water weight caused by a hashi flare up. Good luck and hope you get to the bottom of it.

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