recent results : Hi I would b so grateful for any... - Thyroid UK

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Rowing2 profile image
116 Replies

Hi I would b so grateful for any help with my resent result. I , after the consultants visit agreed to reduce my meds to 75 and 100 levo alternately and reduce my lio to 12.5 daily.( was 100 levo and 25mg lio) . I was reluctant , but agreed. I have felt dreadful ever since and I believe the t3 at a higher dose is better for me, but all they look at is the th3 levels which haven’t changed for ages regardless of what doses I take. Due to my most recent results a different gp has reduced even further to 50 mg levo daily, ( does he think that something so simple will help my tsh level 🤯🤯🤯🤯🤯. ( I actually looked back over the years and my tsh goes up and down quite often). I am also worried as my mum has dementia and my dad Parkinson’s and I’ve recently read that low t3 can contribute to both of these illnesses .

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Rowing2
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116 Replies
TiggerMe profile image
TiggerMe

Hi, you have done multiple posts which gets really tricky, if you could delete the other two and add the pictures as a reply on this post it make is a whole lot easier for everyone 🤗

helvella profile image
helvellaAdministratorThyroid UK

Splitting information across multiple posts means any replies will also likely be split - and confusing. And those replying might be unaware of the other results and replies.

For that reason, I have turned off replying on the other two posts.

As TiggerMe has suggested, could you reply to your own post at the top of this thread and add an image of results into each reply?

Other posts containing results:

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

TiggerMe profile image
TiggerMe

Your B12 and folate are both low, did you follow the usual dosing, testing, timing rules?

Rowing2 profile image
Rowing2 in reply to TiggerMe

Hi there yes

TiggerMe profile image
TiggerMe in reply to Rowing2

TSH 0.05 mIU/L (.35 - 5.5) -5.8%

Free T4 (fT4) 15 pmol/L (9 - 23) 42.9%

Free T3 (fT3) 5.7 pmol/L (3.5 - 6.5) 73.3%

T4:T3 Ratio 2.632 

I get the same issue as my TSH has been low since starting T3, where were your levels when you felt well? Were you above range? 8 months ago your fT3 was a bit OTT at 8.3

My GP also tried this on me and I just refused as like you say they are just looking at TSH, if you are under and Endo or Consultant they shouldn't interfere as they are out of their depth, tell them to at least reinstate your previous dose

Rowing2 profile image
Rowing2 in reply to TiggerMe

Before I started t3 my tsh ranged from 12

TiggerMe profile image
TiggerMe in reply to Rowing2

So you weren't on enough T4 before adding the T3?

Rowing2 profile image
Rowing2 in reply to TiggerMe

I’ve been up and down for ages. They just have absolutely no idea they raise and lower constantly. I do believe m body has changed since I was diagnosed with hashimotos . Honestly I just feel so in the dark.

TiggerMe profile image
TiggerMe in reply to Rowing2

The results you posted 8 months ago seemed to coincide with a Hashi flair as you antibodies were very high

Rowing2 profile image
Rowing2 in reply to TiggerMe

My antibodies I think are around 1,200

TiggerMe profile image
TiggerMe in reply to Rowing2

Have you tried giving up gluten and or dairy which can exacerbate the flairs?

Rowing2 profile image
Rowing2 in reply to TiggerMe

Yes I hv tried both although it’s difficult as I’m also vegetarian.

TiggerMe profile image
TiggerMe in reply to Rowing2

Definitely need a good B12 supplement then

Rowing2 profile image
Rowing2 in reply to TiggerMe

my consultant was useless. He basically said ‘people like you should just accept what you have’ this was in reference to me saying t3 was beneficial and why can’t I have it on nhs. He then said I was shortening m life and when I asked him for reference to this one t took him 3 months to send me around 100 pages where he hadn’t referenced where it was mentioned. My parathyroid was also really high and he said’ oh take no notice of the go results, there always wrong’ 🤢

TiggerMe profile image
TiggerMe in reply to Rowing2

My Endo is a scaremonger too, standard NHS stuff but if you hold firm they seem to back down as long as you are within the fT3/4 range... we often say 'quality rather than quantity of life' when they like to leave you under dosed and feeling like a zombie

Rowing2 profile image
Rowing2 in reply to TiggerMe

I said that to him ….I’d rather quality all day long. He hated the fact that I had some knowledge and was disgusted I was asking fir evidence.

TiggerMe profile image
TiggerMe in reply to Rowing2

Yeah, mine doesn't like to discuss or be questioned... you would think they have enough knowledge to be able to hold a conversation about the topic!!

tattybogle profile image
tattybogle in reply to TiggerMe

lol ,,,,,, "you would think they have enough knowledge to be able to hold a conversation about the topic!!" ,,,,,,,,, thanks for the sunday morning laugh Eeyore

birkie profile image
birkie in reply to Rowing2

Hi Rowing2😠

Just reading your posts, you also mentioned that your parathyroid was high 🤔 do you mean out of range (ranges for pth in my area are (1.60..6.90)..

My thyroid went nuts in 2018 due to graves thyrotoxicosis, I lost it in 2019, like yourself my gp/endos are usless and keep fiddling with my dose, (on T3 only) my TSH was 0.05 and my T3 was 5.60 I was told I needed a review of my medication, and told to decrease, that was in 2020.

I Trully felt awful but had felt like this way before I'd increase the t3, I thought I felt so ill because I needed an increase, when I looked over my printouts I noticed 2 over range calciums I queried my gp over them but we're told "ho they are only mildly elevated 😠 I insisted he send them to a endocrinologist, endo requested parathyroid, calcium, vit D, in June 2020 and Aug 2020 both results showed normocalcemic hyperparathyroidism, although 2 endos wrote saying I had primary hyperparathyroidism (in primary your PTH and calcium will be over range) in normocalcemic your PTH will be raised but your calcium will remain in range) something the endo will never explain to you.

I've fought the NHS on my pth since 2020 I have all the symptoms associated with it after my first diagnosis in 2004.. Kidney stones, ostiopeania, calcification in joints and heart, I wee constantly especially through night, I'm always very thirsty.. (if you can ,check out the symptoms associated with a parathyroid problem)

When my endo dismissed me from there clinic with a watch and wait approach in both 2004 and then in 2020 because I had One normal blood test, in that the calcium and parathyroid went back into normal range, which it does, but can bounce back out again, as mine did 2 months later 😠 I asked why my pth had gone out of range in the first place, because all the parathyroid really does is control your calcium, endo just looked and said "ho it's to complicate to explain 😠 so I did more investigation in to the parathyroids.

NHS failed me with my thyroid it took my surgery over a year to Diagnose me, and they failed me with my parathyroid to, I saw a private parathyroid surgeon who did an ultrasound scan and found the nodule in my neck, saying I actually had normocalcemic hyperparathyroidism, I'm now having a chlorine pet scan on the 9th Aug to determine if its an enlarged para gland.

Unfortunately our endocrinologist know little to nothing about thyroid illness, they know even less about parathyroid illness 🤦‍♀️ but it wouldn't harm you to check out the parathyroid result 👍 and ask why it went out of range in the first place 👍 good luck🍀

Rowing2 profile image
Rowing2 in reply to birkie

Hi there, gosh poor you. My parathyroid is 8.9

birkie profile image
birkie in reply to Rowing2

Well firstly your PTH is over range.. My 2 were.. 8.1 and 9.5..I'm guessing here.. But as only one pth blood been done? And was it done in a EDTA tube?If you present with an out of range parathyroid blood then the endo must do another to see if A, it's gone back into range (although this doesn't mean it can't go out of range again, but they won't tell you this) or B, it's still out of range.. If you have 2 parathyroid bloods out of range then they must perform.. Pth, calcium, vit d on at least 2 occasions to see how they are performing.. Again they don't always do this.. Unless you push them.

Rowing2 profile image
Rowing2 in reply to birkie

is it possible to have hashimotos disease and parathyroid. I have goitre which seems to hv gone down slightly in recent months.

birkie profile image
birkie in reply to Rowing2

I had graves as I said my gp ignored my obviously symptoms saying I was menupausal, he also noted I couldn't have a thyroid problem as I had no goiter 🤦‍♀️ WRONG!! my graves became toxic as I couldn't take the anti thyroid drug but my gp just left me to go into thyroid storm.I'm on a parathyroid site, there are many on there who have hashis, hypo, hyper, and thyroiditis who have also gone on to develop a parathyroid problem.

The surgeon I saw had removed part of a thyroid which contained an enlarged parathyroid gland (when I say enlarged I don't mean like an enlarged thyroid, the size of a normal parathyroid gland is about the size of a grain of rice, even when they go overactive they are still hard to detect and can still be very small.

They can also migrate to other parts of the neck and chest area some as I say have be found within the thyroid it's self, in the chest cavity, high up in the neck and near the heart😳.

We call them little gremlins 😁

And yes you can have hashimos, hyperthyroidism, hypothyroidism and have primary hyperparathyroidism, normocalcemic hyperparathyroidism and normohormonal hyperparathyroidism at the same time.... Although endos will always blame your ongoing condition on your symptoms, not looking at other causes, the very fact your endo dismissed your over range pth result will tell you they know nothing 🤷‍♀️

Rowing2 profile image
Rowing2 in reply to birkie

Gosh poor you. How did you finally get all the correct information you needed. Did you have scans etc.

birkie profile image
birkie in reply to Rowing2

After struggling with my gp and 3 endos who dismissed my over range pth and 2 within range calcium but top end.. (normocalcemic hyperparathyroidism) i was and still am at my wits end, I joined Hyperparathyroid UK action 4 change! I submitted my blood work at least 2 over range pth with my calcium results and vit D... I was accepted and the surgeon I spoke about was on our site, he reached out to me saying it looked more like normocalcemic hyperparathyroidism, and would I like to meet with him... Privately of course,(he is based in Oxford nhs trust, but has a private clinic in bambary) truthfully I couldn't afford it but my son paid, it was worth the money because he did all the tests the NHS refused.As I said he picked up the nodule on the left hand side of my neck, as I'd had full thyroidectomy it was picked up easily Just where I said all the throbbing and sharp pain was, it is around 6/7mm this in turn along with my blood results gained me the right to have the chlorine pet scan(within the NHS) in Liverpool, this scan determines what the nodule is unfortunately on my ultrasound it showed the nodule was either on or buried in to my langyral nerve so the pet scan will show it up better, however if it is buried into the nerve I can't have the op to remove it😢

But because this endo you speak of dismissed your over range pth tells me he his one of those endos that don't really know much about the working nore the relationship between pth and calcium.

What I found out is... Its near hand impossible to get a private pth test, although I am sure you can, but it's really expensive, if with you as was the case with me, my surgery refused to do calcium on a regular basis, even when my calcium was 2.67 they used every excuse in the book as not to perform them regularly 😠

A calcium over range or very top end can indicate a parathyroid problem... But your surgery must do PTH and calcium at the same time with the pth in the EDTA tube.. Because it contains preservatives to protect the sample and it must be tested as soon as possible after the draw.

My first 2 were done correctly in the correct tubes, this was because they were done through the endo, the ones done later through my surgery were done in a gold top tube, I found out through the parathyroid site this was done incorrectly but for some reason the surgery kept doing it like this until I refused to have anymore blood tests done until they used the correct EDTA tube... Hell the nurse had no idea what I meant by this🤦‍♀️ I taught her🤷‍♀️

So don't let them dismiss your one over range pth test you can demand they do another one to see if it's still raised, you need to know this, as well as your thyroid function tests to💓

Rowing2 profile image
Rowing2 in reply to TiggerMe

My tsh is <0.05

TiggerMe profile image
TiggerMe in reply to Rowing2

Mine too... has been since adding T3 even when I reduced T3/4 down to 'perk it up!' I pointed out to the Endo that it suggests a lazy pituitary (which runs on T3) that it made no difference and insisted we concentrate on actual fT3/4 levels!

Rowing2 profile image
Rowing2 in reply to TiggerMe

Would that mean I’m anemic

TiggerMe profile image
TiggerMe in reply to Rowing2

You should hopefully be able to get your B12 and folate levels up with supplements, are you taking anything as they were low in the past results?

Rowing2 profile image
Rowing2 in reply to TiggerMe

Thing that absolutely freaks me out is the dementia link, I need my t3 and t4 to be in the upper levels.

TiggerMe profile image
TiggerMe in reply to Rowing2

Have you had a fT3/4 result between this one and the one 8 months ago?

TiggerMe profile image
TiggerMe in reply to Rowing2

It doesn't necessarily mean you need them high, just at the right level for you to alleviate symptoms... some people tick over nicely around mid to 2/3rds range, it's about finding your optimal

Rowing2 profile image
Rowing2 in reply to TiggerMe

Also my plasma parathyroid level is 8.9 pool/L[1.95-8.45]

TiggerMe profile image
TiggerMe in reply to Rowing2

I don't know anything about these soz 🙃

Rowing2 profile image
Rowing2 in reply to TiggerMe

It’s contradictory as what I believe and this is only me googling that high parathyroid indicated hyper and bone thinning and kidney stones. Apparently , again me reading you can have both. 🤮

TiggerMe profile image
TiggerMe in reply to Rowing2

Just did a quick google... what are your Vit D levels as this seems important to parathyroids working correctly? Your calcium levels aren't raised so that is a good.

Rowing2 profile image
Rowing2 in reply to TiggerMe

It was 88nmol in a range of I think 50-99,999

TiggerMe profile image
TiggerMe in reply to Rowing2

Aim for 100 🤗

tattybogle profile image
tattybogle in reply to Rowing2

p.s Rowing2 , for help in understanding parathyroid issues , parathyroid. com is a good site to have a look around parathyroid.com/

TiggerMe profile image
TiggerMe

Think I would have just said NO to the reduction (easier said than done I know but if you don't agree they can't force you) as its a big drop when you are sitting quite nicely at fT4 42% and fT3 73%

Rowing2 profile image
Rowing2 in reply to TiggerMe

I just do my own thing and they go along with it tbh. Do you think if I reduce levo to 50 and increase t3 back to 25 mg. that would work. I just feel dreadful atm.

Rowing2 profile image
Rowing2 in reply to Rowing2

I’ve put on 2 stones the whole of my body aches, my hand is swollen , my eyes hurt. It’s just pants, but hey ho my cup has always been full so I’m determined to get there, your help means so much as I just feel otherwise I’m just guessing.

TiggerMe profile image
TiggerMe in reply to Rowing2

I think you want to be on whatever you were taking to get these results if you felt well on them

Rowing2 profile image
Rowing2 in reply to TiggerMe

Ve never felt well

TiggerMe profile image
TiggerMe in reply to Rowing2

Are you menopausal too? Checked out your sex hormones?

Rowing2 profile image
Rowing2 in reply to TiggerMe

No, I’m post menopause. I take hrt for hot flushes and migraines, but lots of my hot flushes are thyroid related.

TiggerMe profile image
TiggerMe in reply to Rowing2

Me too... have you checked your testosterone levels?

TiggerMe profile image
TiggerMe in reply to Rowing2

Hard to know, I still felt rotten until my fT4 got back to 50% even with added T3.

I did the whole lets placate the Endo to get the treatment... I rebelled after the first three months when lowered T3/T4 put me back to bed... we seem to be walking the same path... time to get your Wonder Woman pants on and give them what for 🩲

Rowing2 profile image
Rowing2 in reply to TiggerMe

God your me and I’d like to think nobody feels this crap.

TiggerMe profile image
TiggerMe in reply to Rowing2

Yep! I crawled back into bed for a month

TiggerMe profile image
TiggerMe in reply to Rowing2

You are going to be in a sorry state if you do that for a month and it is unlikely to make any difference to your TSH as it's the T3 that suppresses it and they don't seem to be taking any notice of your fT3/4 🤷‍♀️

It took me a good 3 months to claw my way back to half functional after I complied and I struggled even more with low cortisol once I got my dose back up as my poor old adrenals took another bashing 😟

I was intrigued to see if I needed T4 with wonky DIO2 genes... turned out I do!

Rowing2 profile image
Rowing2 in reply to TiggerMe

the go receptionist rang told me what he said. I said what with no plan he just says reduce 100 to 50, I mean honestly . This is the same gp who I don’t see now who said my antibodies were normal. 🤮

TiggerMe profile image
TiggerMe in reply to Rowing2

Yep, that was the call I got, she was a bit shocked when I said NO! They just send a letter back to the Endo to say I refused their advice 🤣 they haven't a clue it's just the GP knee jerk to low TSH... you would think they would look at your records and see you are being monitored elsewhere 🙄

Rowing2 profile image
Rowing2 in reply to TiggerMe

I said the same to the receptionist but there’s part of me being a gurney pig so I can take another blood test next month and say. Told you so

TiggerMe profile image
TiggerMe in reply to Rowing2

🤣 that's just what I did to see if I actually needed T4 of if T3 alone was going to do it for me

TiggerMe profile image
TiggerMe

Top tip to toughen up soft hands? I've just started rowing and my hands are wrecked!

Rowing2 profile image
Rowing2 in reply to TiggerMe

My god you are me. I’ve been rowing fir about 10 years. It’s my therapy although at times I thought I’d never get in a boat again, I’ve gone from rowing with men as I was super strong, to feeling like a complete weed. Do you enjoy it xxxx

Rowing2 profile image
Rowing2 in reply to Rowing2

Can you imagine if you were at my club 🙏👯‍♀️🥂😃

TiggerMe profile image
TiggerMe in reply to Rowing2

We'd be asleep in the corner under all the coats!!

Rowing2 profile image
Rowing2 in reply to TiggerMe

😂😂😂😂😂😂

Rowing2 profile image
Rowing2 in reply to TiggerMe

your holding the oars too tight. You have to Hol£ them as if your holding baby birds xxx

TiggerMe profile image
TiggerMe in reply to Rowing2

I'm just a pleasure rower, I've had an Alden Ocean Shell (1-2 man) for 10+ years but its been too big and cumbersome for the last 3 years but I've just bought a Glide Solo and I'm loving it!

You are likely right I'm hanging on for dear life trying to get back in the groove and get it set up, so many things to re-learn, my knuckles are trashed too!... especially when its windy!!

Rowing2 profile image
Rowing2 in reply to TiggerMe

Your in a single ….wow brave, yes definitely cling on for dear life. We hv a cox less quad. I love it , I row with my sister and two others. Started rowing after with my sister who years after having a dreadful car crash was told rowing would keep her out of a wheelchair. It’s amazing.

tattybogle profile image
tattybogle in reply to TiggerMe

i just looked your new boat up eeyore, i want one !

always liked rowing . like how it uses the body, but can't be doing with the need to organise it with other people so i had a solo inflatable canoe to play with in the sea for a lot of years but its died now.

Never thought about having a rowing boat of my own , sort of assumed they would just be too big to lug about on your own ... you've got me thinking now ... i could get a little hand trailer and walk it down to the sea from my yard . we don't get proper waves here , it's like a massive lake some of the time .

Thanks for making me think about rowing   Rowing2 :)

TiggerMe profile image
TiggerMe in reply to tattybogle

I'm loving it! I took the kayak out one evening even though they are so uncomfortable to sit in and it made me go hunting for something that suited me... we moved here so I could have easy access but haven't had the energy and hate having to rely on others.... I have this trolley and walk it down the lane no problem at all, tie it on the back when I row so no issue with it going 'missing', so good to be able to actually do something I like whenever I have the beans 😁 and it doesn't completely wipe me out afterwards

Your location is perfect 😀

Rowing2 profile image
Rowing2 in reply to tattybogle

It’s fabulous. How lucky you are to be near to the sea. I love rowing in the sea. I did the great Tyne row a few times. 26 k I think and you finish at sea, it’s amazing. We were the same as you regarding faffing around with others , so we bought our own cox less quad. We get a bit of help now as I used to take the bow end and always had lots of the weight, but I’m not that strong anymore. It’s a wonderful sport, my competitive days are over, but it really helps clear the mind and the scenery on the water is breathtaking , we often see kingfishers, otters, swans etc.

Rowing2 profile image
Rowing2 in reply to TiggerMe

Have you put on weight. I’m 2 stones up and still increasing, I’ve tried everything.

TiggerMe profile image
TiggerMe in reply to Rowing2

I had a build up of mucin but once I started T3 I pee'd 5k of it away in 5 weeks!

I did put 3k back on around my middle when I dropped my dose down but I put that down to eating biscuits to get over the sugar crashes... and I actually found some that I can tolerate and I love a biscuit 😁 also had zero energy for anything at the time

It's going again now... even with the biscuits but I'm starting the Zoe Program next month so last hoorah!

Rowing2 profile image
Rowing2 in reply to TiggerMe

What dose do you take. I’m now only taking 12.5 , I felt better on 25 so a full tablet

TiggerMe profile image
TiggerMe in reply to Rowing2

I'm 100 Aristo (Vencamil) and 15 Roma which I take in one go which seems to work best for me

I used to take 25 of Tiromel when I first got my dose up but then dropped it back when I worked out that timing plays a big part

TiggerMe profile image
TiggerMe in reply to Rowing2

Is it fat or fluid? My skin really puffed up, firm tops of the arms solid and thighs chaffing together 😱

TiggerMe profile image
TiggerMe in reply to Rowing2

What's your RHR and BP doing? Once things slow down the weight soon comes up!

Rowing2 profile image
Rowing2 in reply to TiggerMe

Bp 126/78 mmHg , pulse rate 85bmp

TiggerMe profile image
TiggerMe in reply to Rowing2

Very 'NORMAL' madam 👏🤣

Do you know your resting heart rate?

Rowing2 profile image
Rowing2 in reply to TiggerMe

Can’t find that in my notes

TiggerMe profile image
TiggerMe in reply to Rowing2

You'd only really know it if you have a fitness tracker or smart watch maybe to monitor things for us super athletes 😆or more accurately chronic crawlers and couch potatoes 😩

Rowing2 profile image
Rowing2 in reply to TiggerMe

😂😂😂😂I actually did have one but lost it in the river trying to save a dogs ball 😂😂😂😂

SlowDragon profile image
SlowDragonAdministrator

There’s no ferritin result

As vegetarian it’s likely iron and ferritin will be low

You need Full iron panel test including ferritin

B12 and folate both far too low

What vitamin supplements do you normally take

Thyroid levels

FT4: 15 pmol/l (Range 9 - 23)

Ft4 only 42.86% through range

Ft4 is LOW

you likely need dose INCREASE in levothyroxine

Ft3

Day before test did you split T3 and take last 1/3rd of daily dose Approx 8-12 hours before test

TiggerMe profile image
TiggerMe in reply to SlowDragon

Well done SD putting us back on track 🤗

Rowing2 profile image
Rowing2 in reply to SlowDragon

Thank you so much for your response.

I normally take a range of supplements which you recommended, but I stopped them a month ago as I wanted to see a true reading of my body without them. I have never taken the iron tablets though.

The gps just decreased my levo as my result was <0.05 , but it’s been all over the place and that’s all his knowledge seems to stretch to unfortunately. I’ve agreed only for a month then I’m testing again as I’m finally wanting to prove a point tbh.

The consultant did say he thought I may hv another autoimmune disease.

Re the t3 , no I didn’t I did the same as the levo and didn’t take it the night before. ( I always take my tablets before bed). My appointment was 8am on Monday so my last tablets were Saturday around 11.30 pm. Is that wrong?

SlowDragon profile image
SlowDragonAdministrator in reply to Rowing2

Yes

Day before test always split T3 into 2 or 3 smaller doses spread through the day and last dose T3 Approx 8-12 hours before test

Last dose levothyroxine should be 24 hours before test

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

So both Ft4 and (especially) Ft3 results are falsely low as last dose levothyroxine and T3 were 36 hours before test

Work on improving vitamin levels and then retest correctly

Testing 9am

Day before test take levothyroxine at 9am and split T3 as 1/4 tablet then and 1/4 tablet 9pm

Rowing2 profile image
Rowing2 in reply to SlowDragon

Thank you so much for your input as always it’s so informative.

Thyroid63 profile image
Thyroid63

If you take T3 your Tsh is going to be suppressed. T4 looks fine . They need to test your t3 before any dose changes.

I cannot understand why so called experts cannot read and understand the suppression of TSH when taking any t3 medication.

Take a private t3 test. Take control of your health . If you can afford it go private. There are some very knowledgeable thyroid doctors out there. If you feel rubbish they’ll be a reason. Good luck .

Rowing2 profile image
Rowing2 in reply to Thyroid63

My t3 was 5.7

Rowing2 profile image
Rowing2 in reply to Thyroid63

I told the consultant this , he said I was shortening my life , I asked him to give me evidence of that and it took him 3 months to send me around 100 pages of some research paper where he hadn’t indicated where it mentioned it 🤯🤯🤯🤯🤯🤯🤯. He also said as my parathyroid was high. Oh we will retest it here as they’re often wrong at the gp 🤯🤯🤯🤯🤯🤯🙈. Tested it said fine, but didn’t give me result a obviously I have no knowledge to understand it. He said ‘ people like you normally just accept and get on with it’. I gave up at that point. I had to really question if he was actually medical trained.

Thyroid63 profile image
Thyroid63 in reply to Rowing2

I’ve given up going to the NHS . I have found them completely uninterested and useless. All they want to do is prescribe painkillers ( which WILL kill you…) or antidepressants. The first thing they ask you when you see a gp is ‘are you depressed?’ - even if you go in for a boil on your arse! They don’t mention nutrition, vitamins or any supplements. God forbid you actually feel well - that would not please the pharmaceutical industry - who they work for. Rant over.

waveylines profile image
waveylines in reply to Rowing2

I don't let my GP anyway near my thyroid meds & certainly not meddle with them. Last time hospital did a thyroid test without my consent and proceeded with tests despite me telling them I'd been taking biotin. It was mid afternoon too. Consequently Ft3 & Ft 4 were both off the scale. GPs reaction was to text, yes TEXT me telling me to drop my thyroid dose massively. I was furious and refused. He rang me in the end and admitted Biotin would indeed nullify the results.. Retested week later all was fine. Makes me Sooooooo angry. I'm not a medic but Im the one who knows what's what.... start to wonder what's the point of a GP if u have to instruct and teach them all the time!!If you dont then THEY are the ones who cause you to be ill!

Rowing2 profile image
Rowing2 in reply to waveylines

Hi at least he txt🙈, mine got the receptionist t call🤢. How do you get you levo, d they still give the dose you require.

waveylines profile image
waveylines in reply to Rowing2

Yes but it was a non reply text! Had to ring receptionist to protest and complain. It certainly was not a consultation which is what they are meant to do before changing anything!I'm on Armour, NDT, on NHS.

Rowing2 profile image
Rowing2 in reply to Thyroid63

Hi there every time I have my bloods my t3 is tested and it’s always in the nice upper levels. All they look at is tsh though. 🤯

bagsypartime profile image
bagsypartime

stupid british man here. I have hypo and get 100mg levo.In Uk they only test Tsh.It was twenty times normal when diagnosed and now more normal.I was a bit frustrated when i realised the active form t3 wasn't tested.

I've never had any symptoms as far as i know- heart disease if thats connected.I do have low iron.I've had two blood tests but they have more to do with my heart.

I have enjoyed your thread very much reading about rowing and the reasons for it; will look up the boats mentioned.

However the point i'd like to make is there are often threads about thyroid test results and i don't think repeated tests are that useful.You (Many say) i was like a zombie for a month and imply that a dose tweak of lego or t3 would fix this.

I take vitamins that i think might help.Hypo people don't absorb well, and older people (me) are even worse, so i try and get round this.Lets take the fact i'm anaemic (Fair enough i wouldn't know unless i had a blood test) so doc has prescribed a tablet every other day.It didn't work, but i don't blame him it may work for other people, i google iron and start doing what i can myself.I don't think the doc is really not interested in my iron, like yours isn't bothered about the levo.

i think what i'm trying to say these tests give a general picture and at least you know you have a condition.The fine tuning i don't think the docs are too bothered about.I can't see how you could ever win any argument with a doctor because unless they actually kill you it's all mute.

It could be the best medicine is the rowing, and what if the other consultant is right you have another auto immune condition?No dose tweak is going to help. You're unlikely to ever find out what it is and that would mean that the other doc can't really be blamed either.Not taking their side because i know some of them can be unsympathetic .

bagsypartime profile image
bagsypartime in reply to bagsypartime

If i can just make one intelligent contribution- 'you put on two stone and your hand is swollen'.You are retaining water.I don't know what that means but it is interesting.

TiggerMe profile image
TiggerMe in reply to bagsypartime

Retaining water is often a sign of low fT3... what are your recent fT3/4 blood results like? Sounds like your dose might well need tweaking if everything else is optimised...

No amount of vits/ mins will correct low hormone levels if thyroid is damaged

Rowing2 profile image
Rowing2 in reply to bagsypartime

My hand is incredibly painfully , they said it’s carpel tunnel, but it’s not. My weight is mainly around my stomach and my face.

TiggerMe profile image
TiggerMe in reply to Rowing2

Carpel tunnel is typical hypo condition... another big red flag

Rowing2 profile image
Rowing2 in reply to bagsypartime

Hi there, yes your right we have to really find other ways too which I do. Slow dragon is a source of amazing knowledge and I normally take all of the supplements that she initially advised. She’s also told me I’m stopping my meds too early when I get bloods, so I will change that from now on too. I’m quite lucky at my gp though as because they didn’t correctly diagnose me with my goitre and hashimotos , they now allow me all bloods whenever I ask , just ferritin and iron panel they seem not to, but apparently that’s the lab not them. Hope your doing ok. If your anywhere near a river try a learn to row course, you’ll love it.

TiggerMe profile image
TiggerMe in reply to bagsypartime

All good points... we do talk a lot about getting vits, mins etc optimised to allow the best chance of hormone uptake.. no good will come of putting good fuel into an old banger with no oil in the sump and an empty washer bottle!

Like you say it's the holistic view that is lacking from GP/ Endo care so we all need to cover these ourselves as best we can... blood tests are box ticking exercises which need to be navigated as they are disinclined to take into account symptoms these days 😟

Rowing2 is showing that she is under-dosed on her blood tests yet being treated based on TSH.... and yes being undertreated can lead to heart issues and low iron and so much more..

You're right rowing is a marvellous escape from all the nonsense 🚣‍♀️🤗

waveylines profile image
waveylines in reply to bagsypartime

Well they really should be more interested tbh.... as they are actually paid to diagnose and treat! Trouble is their training is incredibly basic and their approach to treatment is simplistic.As far as the blame game is concerned I'm not interested... I'd rather the focus be on outcomes and therein lies the rub... When all is not well the doctor tends to blame the patient saying rubbish like "that's your lot, get on with it" or allege it's psychosomatic (great cop out). Neither response gets the problem resolved. Both responses allows the doctor to dismiss patients. There's far too much of this going on..

TiggerMe profile image
TiggerMe in reply to waveylines

I agree they should come with a health warning and the heads up that if you have read a book from the library about hypo/ hyperthyroidism you likely know more than the person you are about to entrust your health too...

waveylines profile image
waveylines in reply to TiggerMe

Indeed - AND they get paid for their ignorance. Unforgiveable in my book and makes them a liability not a blessing.

Rowing2 profile image
Rowing2 in reply to waveylines

Absolutely unforgivable, couldn’t agree more. Endocrinologists seem to master in diabetics and don’t bother with any asp3cts of the thyroid, just insane.

Hoxo profile image
Hoxo

I’ve not read through everything in detail but at a glance it seems your fT3 and ft4 are within range but with suppressed TSH. In that case I wouldn’t change dosage if you don’t have hyper symptoms. Ask practitioner where is the evidence that suppressed TSH together with within range ft3 and ft4 in patients taking thyroid hormone replacement poses any risk. The answer is none.

bagsypartime profile image
bagsypartime in reply to Hoxo

Someone put me right on this.I thought that levothyroxine is basically t4 and this is what the thyroid should produce but doesnt.It will lower TSH thyroid stimulating hormone from the pituitary which is supposed to be the controling mechanism.Neither of these two actually do anything, but this T4 is supposed to be converted to T3 by the liver, which is the thing we all need.The better T4 and T3 are the lesser the need for anyTSH?

I had a blood test that flagged my condition and one 8wks to titrate.I'd read on here the above, but my later test was only TSH "If that levels in range we don't investigate further."

My Doc was a nice lady but my rambling about TSH, T4,T3 was one of those 'nobody likes a smart-arse moments' and i think all of us do have to be a little self aware.(My wife says i embarrass her contradicting doctors and most times they explain i have the wrong end of the stick like when i let my her have the Levo to help her lose weight by speeding up her metab.)

TiggerMe profile image
TiggerMe in reply to bagsypartime

Hmm... where to start...

Someone put me right on this.I thought that levothyroxine is basically t4 and this is what the thyroid should produce but doesnt.It will lower TSH thyroid stimulating hormone from the pituitary which is supposed to be the controling mechanism.Neither of these two actually do anything, but this T4 is supposed to be converted to T3 by the liver, which is the thing we all need.The better T4 and T3 are the lesser the need for anyTSH?

Levothyroxine is T4...TSH works on a feedback loop with fT3/4 if the pituitary thinks there is enough of these in your blood it reduces TSH which lowers production in the thyroid gland... it doesn't know on a cellular level

I had a blood test that flagged my condition and one 8wks to titrate.I'd read on here the above, but my later test was only TSH "If that levels in range we don't investigate further."

If you are just getting GP tests then you won't know what your fT3/4 levels are as like you say they don't test other than TSH.... I would recommend getting a private test to check these so that you actually have a fuller picture which is when you can fine tune your dosing

My Doc was a nice lady but my rambling about TSH, T4,T3 was one of those 'nobody likes a smart-arse moments' and i think all of us do have to be a little self aware.(My wife says i embarrass her contradicting doctors

Dr's don't generally know anything about fT3/4 as it is dealt with by Endo's

It's a bit like conversing with a tyre mechanic about engine tuning... so yes, time and a place..

and most times they explain i have the wrong end of the stick like when i let my her have the Levo to help her lose weight by speeding up her metab.)

If you say that I'm surprised they don't withdraw your prescription!!

Perhaps your understanding isn't that great as people use T3 (liothyronine) for this effect and if you give her your T4 you will likely just suppress her system and actually slow it down!!

Perhaps time to re-examine your stick!

bagsypartime profile image
bagsypartime in reply to TiggerMe

Thanks for the explanation.I don't however go to the doctors to present a comedy act.I hardly ever go and this is very foolishly as it turns out.Chest pain prompted a visit and a blood test revealed hypothyroidism.

She said you will take Levo and take it for the rest of your life, which was a shock.I may have had it for decades.I was keen to get my hands on this medicine because the condition may cause CAD.She asked my weight etc and estimated i needed 100mg, and then wrote a prescription for 50.

Ended with a heart bypass.All good now.

TiggerMe profile image
TiggerMe in reply to bagsypartime

I'd recommend getting a Full Thyroid Test if I were you to see exactly where you are as it seems your Dr is less than up to speed, are you slim build? What is your current TSH?... I'm all for avoiding Dr's but a little bit of private research might keep you healthier in the long term, you have a wealth of information at your fingertips here

bagsypartime profile image
bagsypartime in reply to TiggerMe

I do appreciate your input.I never seemed to have problems with hypothyroidism as far as i know.After the heart bypass i had to have a blood test to adjust my meds and I should ask for a printed copy of this.I had a phone call with a doc who i think was new to the practice and new to the country- the blood test was a three week wait- the phone appt two weeks.

Anyway i am low on iron-anaemic which i already take tablets for, and there is some kind of problem with my kidney.Levo wasn't mentioned.

The bypass was 1st march twenty weeks ago.I have bought some liquid feroglobin and have started glugging that for my iron.

I've looked kidneys up and the only thing i can think is maybe i take too many supplements?I've always been one for vitamins etc.

Otherwise - knees of a twenty year old, ditto shoulders etc.Hair a lot of grey on the sides maybe.68 yr old.BMI 27. 5,8 85kg.

I use a treadmill and walk on an incline.I work a very physical job.I go to a gym for weight machines and use the sauna whenever i can.

TiggerMe profile image
TiggerMe in reply to bagsypartime

Certainly worth following up as many issues are linked to being hypothyroid, low fT3 can impact kidney function, my failing kidneys bounced back once I optimised my levels.

Just for comparisons sake I'm 55, female, 5,8, 69kg, mostly blonde 😁 and I take 100mcg levo and 15mcg lio (bad converter) you are a lot more active than me so it seems likely at 16kg heavier you would need more than me as a full replacement?

Just to stop this sounding like a dating site.... 🤣

Basic guidance

Levothyroxine dosage is usually based on weight. The starting levothyroxine dosage for most adults is around 1.6 mcg per kg of body weight12. However, the dose of levothyroxine varies from person to person and depends on your symptoms, hormone levels, age and whether you have any other health problems

So that make it 140mcg ish for you? I'm sure there was a chat about Vit B12 and grey hair reverting once levels were increased for some 🤷‍♀️

If you are supplementing you should be testing just to be sure you aren't doing more harm than good 🤗 you really need to know your ferritin, folate, vit D, B12 for good conversion

I use heme iron as it's easier to absorb and on your stomach

Great that your surgery went well but let's aim to keep you away from surgeons in future 😊

Rowing2 profile image
Rowing2 in reply to TiggerMe

That made me lol . I thought it was for me and seeing as it’s a dating ad……I’m a bit jealous it’s not 😂😂😂😂😂. Ok my turn.. I’m 60 🙈. Was 65 kg now 79kg 🤯🤯🤯🤯🤮🤮🤮🤢🤢🤢🤢. Am 5ft6. Blonde ( well grey ) . Was on 100 and 75 mg alternately after visiting the consultant and 25 mg thyronine ( I source from Turkey). Now on apparently 50 mg levo and 12.5 lio, but they want me to take zero liothronine 🤢🤢🤢🤢ooops I’m female, but Sometimes I identify as thyroid confused 😐.

TiggerMe profile image
TiggerMe in reply to Rowing2

🤣this thread has taken a turn.... and I like it 😃

Rowing2 profile image
Rowing2 in reply to TiggerMe

I love it……we have to laugh at something , as to be honest our bodies are 😕😕😕well mine is

TiggerMe profile image
TiggerMe in reply to Rowing2

Don't stress now lovie... when the weight goes you are left like a deflated balloon 😁😩 but there's fire in the belly and that's what count and GSH always a bonus on the dating sites 🤣

bagsypartime profile image
bagsypartime in reply to TiggerMe

Great information.Trouble is so many variables and who knows which one is the troublemaker? I will get some of that t3 and experiment with a very low dose.

I take two or three other pills with the Levo in the morning and also drink tea which i know is not how you are supposed to take it, but that's real life.

I will look into the Heme iron.

As to surgery there are as many opinions about that as Levo. Mine wanted to do a four way. I had read that most grafts fail, some immediately, some in two years, and some in ten years.40%- 60%.However we all have two mammary arteries and these do not fail.So this is one of the rows i had with the surgeon that embarrassed my wife.I wanted the two that would work; not the four that wouldn't.He said that my problem was finding a surgeon who was prepared to do it.In the event he did though saying my wrist and leg veins were rubbish and the grafting sites too narrow.I don't know if that's true or just something they put in the notes as to why the decision was arrived at.Either way he did an excellent job.

TiggerMe profile image
TiggerMe in reply to bagsypartime

Get some full thyroid bloods done and let us at em 🤗

Why not take your levo at bedtime to avoid the other pills and tea?

I will get some of that t3 and experiment with a very low dose.

Please don't dabble with T3 without bloods to go on, it is like rocket fuel compared to T4 and won't be kind to your heart! Sounds like you are less than switched on about your meds, so a very bad combo 😕

Why add T3 anyway if you say you have no hypo symptoms??

I'm going to step out of this conversation now as you are being way too gung ho for me...I wish you well

tattybogle profile image
tattybogle in reply to bagsypartime

bagsypartime

"someone put me right on this ..." :) ok.

The thyroid gland produces mostly T4 , AND a smaller amount of 'ready made' T3 .. the ratio of this ready made T3 is variable in response to circumstances . eg one circumstance is during early failure of the thyroid gland , the higher TSH causes a higher ratio of ready made T3 to be produced ( this 'T3 boost' is lost once we take levo and our TSH is lowered again)

We do get most of our T3 from conversion of T4 .... T4 is converted to T3 in cells all over the body (including in the thyroid itself and the pituitary) , but yes , a lot of that conversion does happen in the liver.

TSH that is 'anywhere in range' when on levo is not a wholly reliable indication that the levels of T4/T3 are 'optimal for that individual' .

GP's are recommended to keep TSH in the lower half of the range for people on levo .. and when trying to optimise treatment with levo , it is accepted that some people will need it to be slightly under range (but preferably not totally supressed)

this explanation may help a bit:

healthunlocked.com/thyroidu... the-shoe-size-analogy.

list of recommendations advising GP's to keep TSH in the lower half of the range :

healthunlocked.com/thyroidu.... list-of-references-recommending-gps-keep-tsh-lower-in-range-f

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

detailed papers proving how TSH relationship to fT4 / fT3 levels is shifted slightly in patients taking replacement thyroid hormone :

healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

bagsypartime profile image
bagsypartime

Thanks for that very nuanced explanation.

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