Swimming through treacle: Hello all, i am... - Thyroid UK

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Swimming through treacle

anjie48 profile image
7 Replies

Hello all,

i am currently on 275mcg levothyroxine and 20mcg liothyronine but something isn't right as i literally feel like i'm swimming/wading through treacle. Over the past few years the endos and docs have been putting my thyroxine up and down like a flaming yo-yo. This is the lowest its been so far and the highest was 375mcg, i feel so drained and exhausted all the time and i just don't know what to do about it. I also have pernicious anemia and celiacs.

I had bloods done the other week and was wondering if anyone can make sense of them? My nurse has sent an urgent letter to my endo for yet ANOTHER referral. All i want is normality and to be able to work properly again. I don't claim esa or anything like that as it would be a complete waste of my time.

Happy New Year btw

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anjie48
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7 Replies
Marz profile image
Marz

Sorry to read you are struggling. You really need a FT3 reading from the blood. That is the most ACTIVE of thyroid hormones and needed in every cell of your body. Maybe you need to decrease the T4 and increase the T3. Maybe you have the D102 gene that prevents the T4 converting.

Your Ferritin is LOW and needs to be halfway through the range. Your B12 is high - are you supplementing ? - in which case the test will be meaningless. I think you need to improve the Ferritin which will enable you to feel stronger and help the uptake and conversion of thyroid hormones.

VitD ? - are you supplementing ?

Hope you soon feel stronger.....

janeb15 profile image
janeb15

I notice that you have not been tested for any kind of chronic infections. Having tests for thyroid and vitamin/mineral levels is often not enough if there are background infections that create inflammation causing all of the problems you mention in your post including thyroid dysfunction. We searched for over 20 years before we discovered that my daughter's thyroid dysfunction was a symptom of much bigger problems. We have had to go to the USA for diagnosis and treatment, but at last we have answers and my daughter is recovering. I'm happy to share information about the comprehensive tests and diagnosis she has received if you are interested. Just send me a PM. Jane x

nightingale-56 profile image
nightingale-56 in reply tojaneb15

Janeb, my apologies to Anjie, but I have sent you PM twice re your invitation a few weeks ago for this information and do not think you have been receiving them. I have just crept in here to ask once again for this information if you would be so kind as to send it to me. I will PM you again just to see if it gets through.

gabkad profile image
gabkad

Could there be something wrong with your sleep? Possibly you are getting non-restorative sleep.

Treepie profile image
Treepie

Are you also asking on the Pernicious Anaemia site? You may get more ideas there.

Hello anjie

Welcome to our forum and sorry to hear of all your health troubles.

You are on a high dose of thyroid meds and with other health complications they may not be working well.

TSH & T4 seem ok but with low ferritin this can impair thyroid hormone synthesis by reducing TPO enzymes. You need to get FT3 tested as the this is the biological hormone that usually allocates symptoms when levels are right.

Also if this were me high dosing thyroid meds, I would have RT3 tested as well.

Do you have thyroid antibodies ? Having one autoimmune disease such as PA predisposes you to others, especially when your immune system is likely to be so compromised. (See Blue Horizon link below)

I would also check out vital cortisol levels and having PA, the active B12 test which will tell you B12 levels available for cellular use. (Private testing links below but also available on NH at St Thomas' with a GP referral.)

Your issues are complex as each condition may stop the other from improving // healing. You can email louise.warvill@thyroiduk.org.uk for a list of sympathetic endos/doctors that members have had positive experiences with.

I hope you feel better soon.

Flower

HU Celiac community

healthunlocked.com/glutenfr...

HU Pernicious Anaemia community

healthunlocked.com/pasoc

Blue Horizons Thyroid Check Plus12

healthunlocked.com/thyroidu...

Active B12 test.

thyroiduk.org.uk/tuk/testin...

Genova private tests

thyroiduk.org.uk/tuk/testin...

Adrenal Stress Profile Saliva Test (order no END01)

thyroiduk.org.uk/tuk/testin...

…………………………………………………………………………………………………………………….....................

Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

…………………………………………………………………………………………………………………….....................

weg1 profile image
weg1

i found the walking through treacle symptom went away when i refused to take levothyroxine and endo was forced to treat me with lio t3 only instead, waiting on results to see if this is working for me. felt rotten on levo meds whatever brand.

have recently felt mentally low and have sciattica, so have increased meds,

still feel tired but running a pub over christmas can do that!

also raynards symptoms have gone ish and joint/muscle pain!?

i supplement

vit d

b12

selenium

k2

eve.primrose

magnesium oil

salt baths

have bromelain/paplain to assist for a bit

i'm halfway through a course of serrapeptase.

and am looking at quercetin

i need to concentrate on gluten free and really try harder to eat well.

hope you feel better soon

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