New blood tests🤯: Hi everyone ❤️ So firstly I... - Thyroid UK

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New blood tests🤯

birkie profile image
21 Replies

Hi everyone ❤️

So firstly I had a endoscope (camera down the stomach) Tuesday because of runny loose bowels and cramping, findings were I have a hiatus hernia 🙄

My last bloods done on Jan 31st 2023 were

On T3 Roma 20mg For 9 wks

T3... 3.7...range.. 3.10...6.80....... In range (not good tho)

TSH..6.25..range.. 0.30..4.50..... Out of range

T4.. 2.90..range 11.00.. 22.00... N/A

Symptoms on 20mg, cramps, runny stools with mucus intermittent

I Trilated up to 25mg after the results above

9wks on 25mg roma

May 2nd 2023

T3... 3...range.. 3.10...6.80.......... 🤯 Out of range fallen even though I've Trilated up by 5mg.. 3.70

TSH...4.42...range.. 0.30...4.50...come down from 6.25 but still to high I think!!

T4..2.70...range 11.00.. 22.00... N/A

Symptoms after trilating up, to 25mg constant cramping with very runny stools a lot of mucus.

My gp saw the photos of my stools I'd taken (this is a new gp 👏) this lead to the endoscope on Tuesday,

I feel this last blood test on may 2nd, and the one one Jan 31st may be because of absorbtion issues 🤷‍♀️ obviously I've had very loose bowels and are going on the toilet everytime I eat it comes right threw me.

The printout says:

T3... Routine telephone appointment see A+G? confirm current dose then A+G endo

TSH level (JPO) satisfactory /normal at 4.42

T4 level.. (JPO) routine telephone appointment see A+G? Confirm current dose then A+G endo

I take my meds at 8am 20mg with water wait one hour then have breakfast second dose 6.30 same regime, same as with the 20mg took last T3 dose at 6.30pm night before, had bloods done at 8.50am

The surgery have just sent an e mail saying my gp will phone me on may 23rd to discuss these results. 🤷‍♀️

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21 Replies
Jaydee1507 profile image
Jaydee1507Administrator

Clearly just going by TSH you need a dose increase and 25mcgs T3 is a low dose for monotherapy.

As you left more than 12 hours between last dose of T3 and blood test your result is a false low. What size capsules do you have? If you could delay the last 5 mcgs to allow that 8-12 hour gap before blood test your results would be more accurate.

Your poorly tummy will likely improve a lot once you have a better amount of T3 in you.

What supplements are you taking?

What are your latest vitamin blood results?

birkie profile image
birkie in reply toJaydee1507

My tummy and bowles are due to colitis and lactose intolerance, I find the more I increase the worse this becomes, I'm sure these drugs are aggravating the colitis, as the pain and runny stools and inflammation are what I get when I have an episode.I've been like this with synthetic meds since my colitis /lactose diagnosis I've tried every thyroid med going without success on trilating up.. Seems the more I ingest the worst I become 🤷‍♀️ I've never been offered NDT or any other thyroid medication only the synthetic kind.

birkie profile image
birkie in reply toJaydee1507

HiJust to add, I've also tried and failed at taking vit d and B12 as my vit D was deficient at 29 in 2020, after one year of trying to stomach vid d in all forms I managed to get it to 43,its now 39 same with B12 these products just aggravate my colitis and I've spent a small fortune on them, my gp will only prescribe the vit D with brilliant blue in them, I had these in 2020 and threw my insides up.

Beads profile image
Beads in reply tobirkie

I know you said you’ve tried all forms of vit D to see if you can stomach them, but the sprays bypass the stomach so this shouldn’t be an issue. You can get sprays for vit D and B12, both from BetterYou. Have you tried those?

birkie profile image
birkie in reply toBeads

That's the sprays I tried both in vitamin D with k2 and B12... If you look on the back it says... May cause a laxative effect, unfortunately it did just that with me, actually I sprayed it on my inside cheek but it still entered my stomach through swollowing 🤷‍♀️

Beads profile image
Beads in reply tobirkie

Argh, bum. Sorry I have no more ideas. 😕

birkie profile image
birkie in reply toBeads

Well at least I've found out why my thyroid bloods were awful 😂 turns out I was taking 5mg in the morning and 5mg at night making 10mg...not 25mg🤦‍♀️ the boxes look alike 🤦‍♀️ I actually have no 20 left... Doh!! Won't make that mistake again, I'm going to discuss the vitamin D and B12 with my gp.. I've tried to get my vit D up but it's just not happening, I just wonder if they would give me the injections??? Just to see if that gets it up,.. with primary hyperparathyroidism if vitamin D is deficient or insufficient it can affect the parathyroid glands 👍

birkie profile image
birkie in reply toJaydee1507

Jaydee1507❤️

HOLD THE FRONT PAGE🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️

I've just been through to my bedroom to where I keep my thyroid medication, I always keep them in the boxes 20 micrograms 5 micrograms .... because my pharmacy as said its going to take a bit to get my next prescription I'm now left with about a weeks worth of meds so just checked on my supply........... Guess what..... Instead of taking the 20 micrograms in the morning I've been taking the bloody 5s for a round a fortnight 🤦‍♀️then 5 micrograms at 6.30...ive actually not got any 20s left🤦‍♀️🤦‍♀️ the boxes look so similar, so in effect I've been taking 10 micrograms for around a fortnight.... Not 25mg...so that's why my bloods are like they are😂 I honestly think I'm going bonkers 😂 but that still doesn't explain the cramping and bad diarrhoea 🤷‍♀️ 🧠is dead😂😂😂😂 but thank you for your input❤️

Jaydee1507 profile image
Jaydee1507Administrator in reply tobirkie

Oh goodness you must feel pretty awful too. Sorry to hear this and how frustrating.

Get hold of the 20mcgs and get back on them. Perhaps go back up the dose slowly if you are sensitive to T3 as wouldnt want to shock your system.

Retest in 6-8 week once you get back on full dose. Aww feel for you.

birkie profile image
birkie in reply toJaydee1507

My brains are mush🧠🧠🧠😂😂😂😂 I need to get those boxes marked😂 I'm going to pop a sticker on each marking 20s and 5s so this doesn't happen again 🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️🤦‍♀️But thanks for your imput today, ❤️❤️❤️❤️

SlowDragon profile image
SlowDragonAdministrator

Were you better on Teva liothyronine tablets

These are cheaper than Roma capsules

Have you tried emptying the powder out the capsules to avoid the capsules as it might be actual capsule upsetting you

On JUST T3 you’re likely to need to be on somewhere between 40mcg and 60mcg per day T3

Obviously your results show you need next dose increase

Are symptoms getting worse or better as dose is increasing

What vitamin supplements are you taking

Presumably you’re strictly dairy free

Have you tried gluten free too

birkie profile image
birkie in reply toSlowDragon

Hi slowdragon ❤️

Symptoms worse as I increase, 🙄 for the last 9wks on the 25mg I decided to take the powder out of the capsules as I had had runny stools and bad cramps on 20mg, it was quite easy to get the powder out I didn't loose any.

I'm shocked at my last bloods especially T3 as I'd trialated up, obviously as I said the very runny stools arnt going to help with absorbtion, and I've become worse with the 25mg.

I've been awake since 4.35 this morning so I decided to take the 20mg(my morning amount with water) at 6, it's just half an hour in and I'm getting pain in the stomach, it's like acid burning in the gut, I've just put up with this thinking it will ease, but 18 weeks and along with the cramping and runny stools I think I've given these meds a good run.

I think they are aggravating my colitis, I have a consultation with the gp on the 23rd of may, I think I need to have a serious conversation about how these meds are affecting me, I've never really gotten on with synthetic medication, and this was my fear going into my thyroidectomy not the op but the medication I'd take after.

Also the primary hyperparathyroidism thing isn't helping either, but I do have an appointment on June 22nd in Liverpool with the specialist 🙏

As for my vits I tried and failed to stomach vitamin d this as now gone into insufficient levels, I tried everything spend a small fortune on tablets, sprays, even doing cod liver oil which gave my yellow greasy bowles, I tried B12 spray which aggravated my stomach making the runny stools and cramping worse, I'm totally lost I've honestly tried everything people have suggested for vitamins, my stomach and bowle just don't like them, as for the other minerals ect the old gp wouldn't test them but this new gp as me in on 16th may for a full blood work up👏 so I will see what comes back, in the meantime I'm going to try another increase to 30mg...but as always I went to get my meds yesterday for which I put my prescription in a fortnight ago... And guess what.... Sorry we can't get these meds, we're trying all supplier's we will let you know when they are here🙄 I've got one weeks supply left so trilating up to 30mg is going to depleat the drug faster.. I just can't seem to win. 😢 Im honestly wondering if it's worth carrying on with this life😥

birkie profile image
birkie in reply toSlowDragon

Also slowdragon I fgot to mention when I was on teva T3, my last thyroid drug before that stupid endo recommend to my gp I come off them, which my gp did, and put me back on T4 until my bloods showed bad hypo and I got back on T3 but Roma not teva.I managed to get to 40mg on teva.. But my T3 was 6.3 or there abouts TSH 0.05 gp had a fit... But I still felt unwell I've never felt well on either T4 or T3 even when my blood work showed normal levels, as I said the primary hyperparathyroidism isn't helping and I know when your calcium goes high or over range that to can have an effect on how you feel, I'm struggling so much to feel better on this T3 medication 😥 as one member mentioned.. Maby I left my thyroid medication to long.. Last dose 6.30pm at 5mg...blood test 8.50am...I'm going to see how I go with 30mg split into 20mg 10mg..when I eventually get my meds from the pharmacy 😠 I know the runny stools bad cramps and inflammation are going to get worse with this increase but it's all I can do until I speak to this new gp.

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

on just T3 only most people would need between 40mcg and 60mcg per day

TSH is almost always suppressed when adequately treated on T3

Have you ever tried Armour or Efra NDT

Not cheap and difficult to get on NHS

Not sure if lactose free

birkie profile image
birkie in reply toSlowDragon

Hi slowdragon ❤️

Firstly thanks for your imputed today❤️

But I've had a brain f##t.... I keep my meds 20mg 5 mg in the boxes, I take 20mg at 8am 5 at 6.30pm.

I've gone into my bedroom to see how many I have left I thought it was around a weeks supply, I've just noticed the box on my night stand is 5s......not 20s...i have no 20s left.. 🤦‍♀️(the boxes are so similar 🤦‍♀️) so I've be taking 10mg per day.... Not 25...hence the results 🧠🧠🧠🧠 honestly I think I'm going mad.... 🤯🤯🤯🤯🤯

birkie profile image
birkie in reply toSlowDragon

As for the ongoing symptoms stomach /bowles this needs addressed, it's either the thyroid meds or calcium build up in the blood, so still need to speak to gp about the ongoing symptoms and now my hiatus hernia, also they want to put me back on ppis, I was on them for 6 years they made no difference, don't know if it's OK to take them with gallstones either🤷‍♀️

SlowDragon profile image
SlowDragonAdministrator in reply tobirkie

When hypothyroid we have LOW stomach acid

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

But never assume you have low stomach acid 

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book 

healthunlocked.com/thyroidu...

Protect your teeth if using ACV with mother 

healthunlocked.com/thyroidu...

Ppi 

Omeprazole will lower vitamin levels even further 

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes 

gut.bmj.com/content/early/2...

Iron Deficiency and PPI 

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

Gallstones common hypothyroid issue too

birkie profile image
birkie in reply toSlowDragon

Thanks slowdragon ❤️I really don't want to go back on ppis.. 🤦‍♀️ They made my gallstone pain worse, and the gentleman who did the scan actually advised me to come off them, I did a few years ago and touch wood I've only had around 2 episodes in that time and they were mild.

Ive tried all the pro botic stuff to, but not really sure this worked I felt no difference, and it's not cheap 🤦‍♀️

meme profile image
meme

if you have HPT you will have all sorts of problems. The symptom list is long!

I hope you get the offending gland/s removed asap as other problems will be difficult to address this then.

birkie profile image
birkie in reply tomeme

Hi❤️

This parathyroid problem as been ongoing since 2020 when my pth went out of range at 8.1..then 9.5..range (1.60..6.90) along with top calcium (normocalcemic hyperparathyroidism, but before this in April 2020 I had 2 over range calciums 2.67..2.63 these were sent to the endo who did pth, calcium... But no vitamin d🙄🙄 anyway to cut a long story short my surgery were doing the testing all wrong.. Either only doing calcium no pth or just doing vit D and calcium, I know now that's not how you test for phpt🤷‍♀️.. Anyway had enough of my surgery and my son paid for a private consultation with a parathyroid surgeon in bambry he identified a nodule in my neck and along with my bloods, recurrent kidney stones, ostiopeania, calcification in most joints and heart he said its looking like normocalcemic hyperparathyroidism, this was in Nov 2020 my gp (old one I'm no longer with him) as sat on this since Nov, I have had numerous talks with him and other people at the surgery about my referral for the pet chlorine scan the private surgeon recommend to no avail, he the old gp just told me it was a bit of leftover thyroid from my thyroidectomy in 2019, so I bit back saying "I wasn't aware you had x ray eyes Dr" 😂 hence me doing away with him.. I hope never to cross his path again, it took over 12 months for him to recognise I had graves disease, that's how I lost my thyroid 😠

New gp has now referd me to Liverpool 👏 yes as you say I have all sorts of problems going on but this old gp has done nothing😠

meme profile image
meme in reply tobirkie

so sorry to hear that☹️.,HPT is very common but so overlooked or ignored.

Mr K in Oxfordshire operated on my husband 18 months ago and we cannot praise him enough.

I hope you get sorted very soon.

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