Having trouble : I think ive finally found the... - Thyroid UK

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Having trouble

Kowbie profile image
40 Replies

I think ive finally found the right place to send you a text been round the houses,

Not feeling great would like to send my results to you from back in March had new bloods done today this is the first time ive ever asked to see my results will send new ones when I get them thankyou oh now I can’t add results I’m not doing very well at all sorry will try again soon

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Kowbie profile image
Kowbie
To view profiles and participate in discussions please or .
40 Replies
helvella profile image
helvellaAdministratorThyroid UK

You can attach a picture to your post - or you can respond to your own post and add a picture.

Or you can simply type your results out. :-)

Please make sure you include the reference intervals (ranges) as, without them, test results are meaningless. :-(

Kowbie profile image
Kowbie in reply to helvella

I have done that I hope you can all see them ok thankyou to you all

SlowDragon profile image
SlowDragonAdministrator in reply to Kowbie

I am removing images as they show your Date of birth and name

Please reattach with these details hidden

Kowbie profile image
Kowbie in reply to SlowDragon

Thankyou for that I will but I’m trying to answer people, I’m going to answer you all in time thanks all

PurpleNails profile image
PurpleNailsAdministrator

Hello kowbie Welcome to the forum

Sorry to hear you are not feeling well. There are lots of helpful members here who can help advise you.

Test results are the most useful way to help. With results we can explain exactly what they mean & what to do next so start a new post once you have them.

Did you have some blood test in March? You should be able to request a copy of that test. When you have test results back always request a copy via reception (don’t ask doctor). Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to and avoid providing just say they are “for your records”. You are legally entitled to them.

How long have you been taking thyroxine & what dose do you currently take? Do you always have same brand? Do you take levo only with water away from food, hot drinks & other medication & supplements if you take any?

When you test do you test early in morning after fasting except water and delay levo until after draw? This give highest TSH & lowest FT4. Doctor often think this is not revealing and don’t advise about this.

For full thyroid function you need TSH FT4 & FT3. Also important to test B12, ferritin folate & vitamin D it these are optimal (not just in range) levo won’t work well.

Kowbie profile image
Kowbie in reply to PurpleNails

Thankyou for your reply I have had bloods this morning and did what it said I am on 200 mg thyroxine don’t think I’ve always been on the same brand sorry,will try and send results again ,I can’t get to send the others yet oh dear will try again thankyou

SeasideSusie profile image
SeasideSusieRemembering in reply to Kowbie

Kowbie

I have removed your image. It shows your name, date of birth and NHS number, all of which leave you at risk of identity theft. Please resubmit without your personal details showing at the bottom of the page.

Kowbie profile image
Kowbie in reply to SeasideSusie

Thankyou for that I will get round to submitting them soon

Kowbie profile image
Kowbie in reply to PurpleNails

I hope you can see my reply and results thankyou for contacting me x

Kowbie profile image
Kowbie in reply to PurpleNails

Nice to meet you, no I don’t always take with just water and I take what medication all together I am on 200 mg a day it must be at least 30 years I have been on meds it kept flipping over one time over and then under dr sent me to have radio active iodine treatment to bring it back to normal but it didn’t it stopped altogether thanks for your interest x

Kowbie profile image
Kowbie

This is a message I sent to the wrong place

SeasideSusie profile image
SeasideSusieRemembering in reply to Kowbie

Kowbie

I have removed all the images of your results as they all showed your name, date of birth and NHS number leaving you vulnerable to identity theft. Feel free to resubmit without those details at the bottom of the pages showing.

I have also removed the other image as it showed your email address which is not a good thing to put on a public forum.

Kowbie profile image
Kowbie in reply to SeasideSusie

Thankyou for doing that for me , I’ll be honest I don’t know what I’m doing and how to do things on computers properly I just try my best and hope for the best thanks

Kowbie profile image
Kowbie

I hope they have come through to you ok thankyou

greygoose profile image
greygoose in reply to Kowbie

Come through loud and clear! And, the up shot is, you have been very badly served by ignorant doctors! You obviously had Hashi's to begin with - an autoimmune disease where the immune system slowly destroys the thyroid. The RAI treatment only hastened the inevitable, but wasn't necessary. And the doctors you've seen since have ho idea how to treat you with thyroid hormone replacement.

You are under-medicated, as shown by your mid-range-ish FT4/3, and your high cholesterol. You need an increase in dose of 25 mcg. But, your doctors are only looking at the TSH, because they don't know any better! Up to you to insist that you still have symptoms and need that increase in dose, no matter what the TSH! And, your ferritin is too low.

Sorry to tell you this, but you ought to remove those photos and rephotograph them because they show your full name and social security number, which puts you at risk of identity theft.

SlowDragon profile image
SlowDragonAdministrator in reply to greygoose

no I don’t always take with just water and I take what medication all together

I think the FIRST step is for Kowbie to START taking levothyroxine correctly

greygoose profile image
greygoose in reply to SlowDragon

Ah, yes! You're right. That information didn't register because I got bogged down in the blood test results! Thank you for pointing it out.

SlowDragon profile image
SlowDragonAdministrator

Levothyroxine is an extremely fussy medication and absolutely MUST be taken on its own, on an empty stomach and then absolutely nothing apart from water for at least an hour after

No other medications or supplements within 2 hours. Some must be at least 4 hours away from levothyroxine

What other medications and vitamin supplements are you currently taking

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

Which brand of levothyroxine are you currently taking

Many people find different brands are not interchangeable

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

Suggest you start taking levothyroxine correctly…….retest in 6-8 weeks

Kowbie profile image
Kowbie in reply to SlowDragon

Thankyou I didn’t know that have been taking mine at night altogether with sertraline amlodipine aspirin and co coda ok and have to start back on lansoprazole thankyou I will start doing that

Kowbie profile image
Kowbie in reply to Kowbie

Should say co codamol

helvella profile image
helvellaAdministratorThyroid UK in reply to Kowbie

You may not realise that you can edit, or delete, any posts or responses you have made here.

HealthUnlocked have produced some help for how to do this. You can find this here:

support.healthunlocked.com/...

When you edit the original post in a thread, you will also have the option to add (or remove) a single image. (To replace an image, remove the existing image, then add the new one.) This is the same process as writing a new post:

support.healthunlocked.com/...

I am pointing this out purely to ensure that you know your options. :-)

(If you make extensive changes, it is sometimes helpful to add a comment so that people can see that you have made changes.)

Please do not feel the need to respond to this.

Kowbie profile image
Kowbie in reply to helvella

Thanks

Kowbie profile image
Kowbie in reply to Kowbie

Forgot to say Teva thyroxine

SlowDragon profile image
SlowDragonAdministrator

Can see in your profile you recently had different brand levothyroxine- Aristo and it doesn’t suit you

Contact GP and request new prescription

Many people find different brands are not interchangeable

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

Which brand of levothyroxine do you normally get

Most common brands are

Mercury Pharma (now called Advanz) - 25mcg, 50mcg and 100mcg tablets

Accord (previously called Activis) also called Almus via Boots or Northstar via Lloyds. 50mcg and 100mcg tablets

Kowbie profile image
Kowbie in reply to SlowDragon

At the moment I’m on teva

SlowDragon profile image
SlowDragonAdministrator in reply to Kowbie

So are you lactose intolerant

Both Teva and Aristo are lactose free

Teva brand upsets many people

Teva contains mannitol as a filler, which seems to be possible cause of problems.

But for some people (usually if lactose intolerant, Teva is by far the best option)

Teva, or Aristo (100mcg only) are the only lactose free tablets

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Most hypothyroid patients have LOW stomach acid

Lansoprazole is a Proton Pump inhibitor (PPI) to treat HIGH stomach acid

High and low stomach acid have virtually identical symptoms- bloating, acid reflux heartburn etc

But VERY DIFFERENT TREATMENT

Once you start taking levothyroxine correctly you should see stomach issues improving anyway

But if taking Lansoprazole it should be taken as far away as possible from levothyroxine

Minimum 4 hours

Kowbie profile image
Kowbie in reply to SlowDragon

I have never been told that I am lactose intolerant, but I am suffering with things there had to have a gastroendocapy not sure if spelling I right they said very inflamed duodenum and took 4 biopsies still waiting on results

pennyannie profile image
pennyannie

Hello Kowkie and welcome to the forum :

I too had RAI for my thyroid and I was diagnosed with Graves Disease - do you remember if that was your original diagnosis all those years ago ?

The radioactive iodine burns out your thyroid in situ and you ultimately become hypothyroid and are put on T4 - Levothyroxine - thyroid hormone replacement.

It might help you if you go on the Thyroid UK website and start to read up about all things thyroid as it seems like a mountain to climb and information overload but it could easily be just jigsaw pieces and once we get the corner pieces in place you will start to feel better.

It is very important that your core strength is strong and solid and I know I need my ferritin at around 100, my folate at around 20 , my active B12 70 + ( serum 500 + ) and my vitamin D at around 100 :

I'm sorry but I can't see these photo shots too well :

T4 - Levothyroxine is a storage hormone and needs to be converted into T3 in our body and we generally feel at our best when our T4 is in around the top quadrant of it's range as this should give a good level of T3 which is body's fuel.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

It is important that you are dosed and monitored on your T3 and T4 blood test results with the intention to have both these vital hormones, in balance, at roughly a 1 / 4 ratio - T3 / T4 and at a high enough level to relieve your symptoms.

Kowbie profile image
Kowbie in reply to pennyannie

Thanks for your reply I will try and go to the site you suggested but I’m trying to reply to everyone and I don’t always take things in properly but thankyou very much

Kowbie profile image
Kowbie in reply to pennyannie

It’s so many years ago I can’t remember but I was told that it would bring it back to what it should be thanks

pennyannie profile image
pennyannie in reply to Kowbie

Don't worry about anything - you have a lot of people here who are trying to offer you support as we have all been in similar situations and why we come back on here to help each other.

You can always come back and read everything again another day and ask questions of people if you don't understand the suggestions offered to you.

Kowbie profile image
Kowbie in reply to pennyannie

Thankyou for saying that

pennyannie profile image
pennyannie in reply to Kowbie

No worries just go at your own time and ask questions, we are here to help.

Start a new post after around 24 hours as this " rolling screen " goes on rolling and every post is answered as thoroughly as it can be on the first reading and a post from 24 hours ago usually seen as " actioned and answered " :

If you want to ask a question within your post, no one in particular gets alerted and you've no guarantee anyone will look back and see it.

If you want to ask a question of a certain person simply reply to them, as you have to me and they get alerted and will reply to you.

Hope that makes sense, and I'll leave you to start your homework.

Go slow, start reading other peoples posts and answers, it does all slowly sink in, even though you may think it 's too complicated and all over your head.

Kowbie profile image
Kowbie in reply to pennyannie

Would just like to thank you and everyone else who has supported me when I get my new results I will put them on for your help again and will start taking thyroxine on its own as suggested bye for now really appreciated everything

PurpleNails profile image
PurpleNailsAdministrator

Taking levo with other medication might mean it’s affecting the absorption. What other medication do you take. Do you take an6 supplements? Taking it just with water might equate to a dose increase. So start taking it the advised way.

You done well to post images it took me many weeks to work out how to do it but I suggest you delete them now as they contain your personal details. You can crop the images and re add.

Did you have a diagnosis of Graves? Treatment of under active thyroid after RAI can be more difficult. The TSH is not reliable after being hyperactive for a length of time.

I’ve picked out some results to discuss further.

Cholesterol 6.3 (3.6 - 5). Common to be over range when thyroid hormone low. Usually recommended to treat low thyroid levels before starting any cholesterol treatment.

Ferritin 48 (23 -300) this is not optimal.

B12 529 (187 - 883) ok

Folate 4.4 (2.7 - 15) this needs to be half way through range.

TSH 0.02 (0.35 - 3.5) below range most GP use this measurement and will advise dose reduction, but do not agree as your thyroid levels are low in range.

FT4 14.9 (7.5 - 21.1) 54% aim for this to be in the top third of range.

FT3 4.4 (3.8 - 6) 27% This is too low. The percentage is usually lower than FT4 level but by a 10 - 15 % margin. Your FT3 conversion is disproportionately lower. Improving key nutrients can improve this.

Has anyone explained how the Hba1c reading works?

HbA1c measures the sugar attached to the haemoglobin, so it gives an average reading from past few months. So 46 does put you high in the pre diabetes range. Has this been discussed with you, you can make dietary changes.

* HbA1c below 41 mmol/mol (6.0%): Non-diabetic

* HbA1c between 42 and 47 mmol/mol (6.0–6.4%): Impaired glucose regulation (IGR) or Prediabetes

* HbA1c of 48 mmol/mol (6.5%) or over: Type 2 diabetes

Kowbie profile image
Kowbie in reply to PurpleNails

No I’m afraid I don’t no anything,I have had a blood test today and they were going to do a diabetic one as well I think , when I get the results I will put them on here thanks

PurpleNails profile image
PurpleNailsAdministrator in reply to Kowbie

That’s terrible you should have been told & usually it should be repeated in 3 months to see if improvements can be made.

SlowDragon profile image
SlowDragonAdministrator

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

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

naturalendocrinesolutions.c...

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

huffingtonpost.co.uk/laura-...

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

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi like Lansoprazole or Omeprazole will lower vitamin levels

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...

SlowDragon profile image
SlowDragonAdministrator

First step is to start taking levothyroxine on its own well away from all other medications

Work out which brand levothyroxine suits you best and ALWAYS get same brand

Get thyroid tested again in 6-8 weeks time

ALWAYS test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Request vitamin D test too

Explain to GP you have been taking levothyroxine incorrectly

Can they test vitamin D now

Retest thyroid in 2 months

Kowbie profile image
Kowbie

Thankyou I will

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