8 months since first post..new results and ques... - Thyroid UK

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8 months since first post..new results and questions

Regenallotment profile image
RegenallotmentAmbassador
25 Replies

8 months on from my first noobie post on the forum asking for help. I’m pretty pleased with this, feeling so much better than I did, the advice here has been life changing.

Still work to do, very achy, limited capacity to do anything outside of turning up to work/home stuff but that is an improvement, digestion is less IBSy and less refluxy, I am gluten, dairy, soy, alcohol, sulphite free, very low carb/paleo/AI diet. I can make it through most weeks without a nap – that’s a win! If I eat normally I am not losing any weight still 66.6kg, I have to cut out absolutely all snacks and walk around hungry all the time (not sustainable) to see any change there.

Results from. MMH 30.1.23 (125mcg Teva for 7 weeks split 25/100 night/morning)

Testing as per usual protocol on this forum. Fasting, 24 hrs from last dose, no biotin supplement for 5 days etc.

• TSH 0.12 mIU/L (0.27 - 4.2) -3.8%

• Free T4 (fT4) 20.7 pmol/L (12 - 22) 87.0%

• Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 35.1%

• T4:T3 Ratio 4.705 

• Folate - Serum 20 ug/L (3.89 - 20) 100.0%

• Vitamin B12 (active) 186 nmol/L (37.51 - 150) 132.0%

• Vitamin D 114 nmol/L

• Ferritin 41 ug/L (10 - 400) 7.9% (down from 68ug/L in October)

• Haemoglobin 151 g/L

• Transferrin Saturation 30 %

My questions:

The MMH notes say stop taking Vit D, not sure I agree with that, should I go to maintenance dose now? 2000iu or 1000iu per day?

Ferritin Range is weird, past ranges have been 30-148 and 13-150 – I eat liver twice a week, did have a heavy period week before testing, I have fibroids and also take Transexamic Acid for these. GP follow up for this and recent ultrasound early Feb. Any more Ferritin tips?

T3 – I have a Roseway labs appointment next week to discuss options for private T3, do I put it off for 8 weeks, see if my T3 comes up in another 8 weeks? T3 has flatlined at 4.4, 4.3, 4.4, 4.2, 4.4 (same range) since June 2022 regardless of the titration from 25mcg upto 125 mcg so I'm skeptical of watching and waiting another 2 months. I do have the DIO2 gene mutation. Last neck MRI showed ‘small’ thyroid, no size or further notes given. I have TPO antibodies confirmed.

TSH – I’m assuming I ignore that, although any doc won’t. I'm not going to share with GP unless they ask.

What I take currently:

Igennus Super B Complex (methylated B vits + C) 2 x day as per instructions to match previous Thorne Basic B which I wasn't able to re-purchase.

In testing week I take Natures Best B12 1000ug & Health Leads L-Methylfolate 400ug)

Most days when on the B Complex I take an extra Folate - could I stop that now?

H&B Selenium 200ug

Horbaach D3 + K2 4000iu/25ug (oil dropper)

Magnesium Glycinate 300mg 1 capsule not 2 (so half stated dose on bottle).

Just started 125mcg Aristo split 25/100 night/morning.

Looking forward to your collective wisdom 🌱🦋🌱

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25 Replies
SlowDragon profile image
SlowDragonAdministrator

I think I would reduce vitamin D to 3000iu

Reduce/stop extra folate

Are you taking selenium every day

Have you tested selenium levels

Considered supplementing zinc?

Only change one thing at a time so

See how you get on with Aristo first …….before considering T3 yet

Regenallotment profile image
RegenallotmentAmbassador in reply toSlowDragon

Thanks for the advice, just what I needed.

Selenium nope not tested. Not sure how/where to test that. Could just stop it, hair and nails are transformed so thought it was that. Yes everyday.

Zinc - I’ve got a H&B one with copper that gives me a funny tummy…I was alternating zinc and selenium different days but the zinc days weren’t good.

Right yes, voice of reason I’ll put off Roseway another 8 weeks.

Thanks 🙏

SlowDragon profile image
SlowDragonAdministrator in reply toRegenallotment

Blue Horizon

bluehorizonbloodtests.co.uk...

Regenallotment profile image
RegenallotmentAmbassador in reply toSlowDragon

cripes £99 I can only just manage to get my thyroid and vits done. I’ll start saving 🫣 in the meantime drop down from 200ug maybe?

Any ideas on ferritin, really struggling to raise that.

SlowDragon profile image
SlowDragonAdministrator in reply toRegenallotment

Ferritin. Just keep on plugging away, red meat, shellfish, liver, black pudding etc etc

My own experience with selenium, was my gastroenterologist recommended I supplement selenium. I took it every day for year - 18months. Can’t say I ever noticed any difference taking it.

So I got test. (It was about £100 just to test selenium then) Result was some way over range. I reduced to 3 x week. And after another few months reduced to once a week. Been taking once week ever since ….But never retested.

I might do that combined test…..pity it doesn’t include calcium too

Regenallotment profile image
RegenallotmentAmbassador in reply toSlowDragon

Thanks for sharing this is really helpful.

I’d heard people get very garlicky breath if you take too much selenium, hubby had that a while back and promised he hadn’t had a sneaky garlic bread 🤣 he stopped for a few days and it went away. No idea if that’s true or not. I’ll go for Selenium Sundays and take less often. See if I notice anything different.

yep, will get on the meat 🥩

🙏

TiggerMe profile image
TiggerMeAmbassador

You and I joined about the same time (though I'd been on a downhill trudging on T4 for 4 years) and have very similar results, diet, mucin, DIO2 wonk, supplements.... I can't tolerate copper either and ferritin is on the rise thanks to Three Arrows Heme, fed up with chicken liver pate and histamine issues! Just ordered the MMH Full Health Screen to see where I'm at, had gone from 32-67 in the previous 4 months... working well on my daughter to.

I too am feeling a whole lot better than I did last summer, Aristo seems good, I added in T3 back in August as I was in the 3's with top end T4....I experimented with Tiromel and am now on NHS Roma since last week... again all good 🤞

Likely T3 is going to help you too as you have reached the limit on TSH/T4

Big fan of HRT which has also helped drag me back to the land of the almost living and regained a good balance of hormones... concentrating now on being kind to my adrenals as have lowish cortisol but hoping that'll come right with T3... did you have high?

Great result with Vit D, so you can go ahead with the calcium urine test thingy if you stop for a week as SD advised

Like you say this forum is utterly life changing 🙏💃🤸‍♀️🤗

Regenallotment profile image
RegenallotmentAmbassador in reply toTiggerMe

thanks for your lovely encouraging reply 💕

Haven’t tested cortisol, I know I run on adrenaline when excited, stressed, and am working hard on strategies to resolve this. More yoga, more relaxation in downtime, less internal pressure on doing stuff. I can only manage to budget private testing for thyroid and vits. But sorting thyroid and vits has made a huge difference to energy levels. Sarah Myhill’s book had a good bit on adrenals and I’ve been banging on about a good podcast I heard last week Dr Eric Baclavage on Thyroid Answers.

⬆️⬆️⬆️ heme sounds good, thanks for the tip I’ll try that. I don’t mind the liver anymore especially that wonderful Jewish recipe with egg and crispy onions but don’t seem to be able to eat enough to make a lasting difference.

Calcium was normal, thanks for remembering, nothing to report so along with normal PTH just something to bear in mind for the future. The adenoma seen on the ultrasound apparently didn’t look of any concern in the MRI. Asking GP about that at next appt.

HRT not while my fibroids are growing and cycle is so strong and pretty regular, ultrasound shows ovaries still pumping, still ovulating. All previous symptoms were defffo hypo for me. Was on Femoston for 3 years before hypo diagnosis. Contains lactose, made me feel awful.

So glad you are on the right track. It’s really reassuring to hear your progress. Much love to you my wonky donkey pal 🌱

TiggerMe profile image
TiggerMeAmbassador in reply toRegenallotment

Ah yes Dr Eric... all queued up only to find I'd listened to him in October 🙄

I was think of those pee sticks you had for calcium?

I'm thinking fibroids is a sign of high estrogen or low progesterone, is that when they offered you the Mirena (worked well for me during my 40's) but like you say we both live with 'snipped' men so a bit overkill... maybe a little progesterone cream to balance you would help lessen the build up and also help with holding on to your iron levels?

🐴 🤗

Regenallotment profile image
RegenallotmentAmbassador in reply toTiggerMe

interesting so 3 years of unnecessary HRT could have built the fibroids…. Definitely not touching progesterone, I’ll be down a dark path again on that. Causes depression for me. I’m so glad it works for you. I was a fully signed up advocate when I first started HRT but overtime it caused quite a bit of damage. Hmm been googling heme iron, quite a rabbit hole and sooo expensive. Will try ordering another hogget for the freezer and more steak along with the liver. Hubby will be delighted. I need to find GF black pudding too.

Calcium yes the £25 wee stick turned out to be a vial and reagent kit, was good, easy to do. Came back clear no sign of cloudiness so all normal. Good for peace of mind.

🌱

TiggerMe profile image
TiggerMeAmbassador in reply toRegenallotment

Oh Soz...I found vaginally it worked well.... I suppose much like the Mirena putting it where it's needed.... I can imagine, not good if what you needed was thyroid hormones it would just knock you more off balance 😔

I only take 1 a day of the heme so £20ish per 3 months... double that when I supply daughter too! 🙄 Still worked out cheaper than the organic chicken livers etc and it works without faff and bunging you up 💃I'm so worth it 🤗 I don't get along with red meat so that's another saving... swings and roundabouts

Regenallotment profile image
RegenallotmentAmbassador in reply toTiggerMe

ah yes that’s not so bad. Pasture fed lambs liver is cheap as chips at the butchers here. Yes same, my mystery tablet drawer (as darling son calls it) gets raided when daughter is home 🌱

TiggerMe profile image
TiggerMeAmbassador in reply toRegenallotment

Do you manage to shoehorn in the importance of B12 and iron to your students during Geography lessons... essential for concentration and exam results... Wish someone had told me, daughter is now preaching to all her work mates 😇

Regenallotment profile image
RegenallotmentAmbassador in reply toTiggerMe

One has to be careful what one is peddling beyond the curriculum and usual healthy habits pastoral support.

I do suggest they ask GPs for blood tests and find out what they are short of when they talk about appointments for their symptoms.

Often have emails from worried Mums that spark a conversation about vits status.

It’s a shame GPs are so quick to prescribe anxiety meds to young people, when it could easily be vits imbalance. So I suggest they ask the GP to rule that out too. 🌱

TiggerMe profile image
TiggerMeAmbassador in reply toRegenallotment

👏👏

in reply toRegenallotment

Hi Regenallotment.

I grew up eating lamb and have always been iron deficient.

When I started eating steak my iron levels started going up. However, twenty three years ago when my iron was down to 5 due to malabsorption, I was first put on childrens' liquid iron. Then when I started eating bloody, almost raw steak (always with greens), I could feel the lift in energy after eating, and iron levels started going up.

But it was not enough, so in addition to rawish steak I have to take one slow release iron tablet (Maltofer=Iron polymaltose 370mg equivalent to 100mg of elemental iron per tablet) with food every day.

Awhile back, I stopped supplementing iron after stopping my periods (bleeding 2 weeks out of every 4 with fibroids [not on HRT or the pill] & a 3 week cycle) but iron started declining. (Btw, like Eeyore100, I had success with progesterone. It worked for me by reducing fibro pain but not in reducing heavy periods.)

So, getting back to remedying iron deficiency: I have to supplement with a Maltofer iron tablet to this day, no matter how good my diet is.

Regenallotment profile image
RegenallotmentAmbassador in reply to

thanks so much for this, I see the parallels in your experience and really appreciate you sharing this. Luckily I love a steak so that’s a keeper and thanks I’ll look at the iron supplement. 🤗🌱

Regenallotment profile image
RegenallotmentAmbassador in reply to

me again sorry to other you, I wanted to ask what form of progesterone you took for your fibro pain? Just had another GP call after another scan and she offered Mirena coil again, that’s the 4th time. I don’t know what to do. They sound like Bayer sales people. Dismissing the Danish study (whole population) that showed no difference in mental health between tablets and coil and showed all caused depression. I’m not keen but while fibroids are now doubled in size and 2cm this is their only suggestion (even though the waiting list is 9 months and currently closed). Latest GP said try it and have it out if you don’t get on with it…. Said no impact on Levothyroxine. Said she gives it to people suicidal with PMS.

Hmmm I think I’ll have to just manage. I don’t think I can go through with it, last coil was excruciating, i could feel it inside me, all the time.

in reply toRegenallotment

Hi Regenallotment

I was taking a compounded form of progesterone[sp?] (can't remember whether in tablet or powder form) to stop me bleeding so much (2 weeks out of 4) but stopped when the higher doseage started causing me to stiffen up. Sensed that the stiffening was not good and I declined higher doses. So, no help in reducing the 2 weeks out of 4 bleeding.

The easing of fibro pain was just incidental.

Regenallotment profile image
RegenallotmentAmbassador in reply to

thanks for sharing, really helpful. 🙏

Delgor profile image
Delgor

Great to hear that you are making such good progress! I too have just had the MMH screen test done and was very pleased with the results on the whole and they also told me to take less vit D (mine was 102) and I'm leaving it that way as I take 3000 iu continously. I've also been taking 100 selenium daily plus zinc which I feel has improved certain things but need to test - found Cerascreen who check out selenium, zinc and magnesium for £69 but doesn't include copper so thought I'd mention it in case it's of interest. Never in my wildest dreams thought I would end up spending so much money on blood tests but it's a case of anything that may help to get me back to where I once was. Take care!😀

Regenallotment profile image
RegenallotmentAmbassador in reply toDelgor

Thanks so much for the testing tip, that is a better price for sure. Glad to hear you were pleased with your latest results 👏 long may this continue 🌱

Imaaan profile image
Imaaan

Curious to know if you plan on introducing any t3 to your regimen whether synthetic or ndt? I think it would help boost your free t3. Thats said, with your low ferratin levels it might be too much for your system. I couldn't tolerate my ndt when my ferratin was midway or a little below

Regenallotment profile image
RegenallotmentAmbassador in reply toImaaan

ah that’s interesting, thanks for sharing this info. I’ll bear that in mind. I’ll give Aristo time to settle first and then look at next steps. 🙏🌱

Imaaan profile image
Imaaan in reply toRegenallotment

All the best :)

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