Chronic fatigue : Should I still be like this my... - Thyroid UK

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Chronic fatigue

26 Replies

Should I still be like this my bloods two weeks ago

Tsh 11

T4 19

T3 3.2

Since then I have been taking 100 t4 was on alternate 75/100

I am so tired I can hardly hold my head up can’t seem to get enough air feel like I am dragging an elephant about should I not be feeling better

Thanks for your advice

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26 Replies
Nanaedake profile image
Nanaedake

Do you think you could pop the lab ranges next to your blood test results? Lab ranges vary so we need them to interpret results. Without lab ranges I would guess your TSH is too high.

in reply toNanaedake

Ok

in reply toNanaedake

Tsh10.4 0.27-4.20

T4 19.2 12-22

T3 3.2 3.1-6.8

I’ve increased to 100 t4 everyday advice by gp

But this is slowly killing me I can’t even bare to sit up it just comes over like a wave I have to go to bed

Nanaedake profile image
Nanaedake in reply to

Have your symptoms got worse since you increased your levothyroxine?

Your TSH is much too high, it needs to be around 1 or a little lower which is where most people feel well. Is your T3 result a Free T3? if so then it's much too low and confirms you needed the dose increase and retest in 6 weeks then increase again until in the right range.

If you feel unwell with a dose increase it could be several reasons. Did the pharmacy give you a different type of levothyroxine with your dose change? If so, it could be the brand of levo.

Another reason could be low vitamin levels which sometimes give symptoms when thyroid hormone deficiency is addressed. Have you had B12, folate, ferritin and vitamin D tested? Edited: Just seen your other posts and see you've already checked out vitamin levels so unlikely to be that then.

in reply toNanaedake

No I’m on the same brand had some vitamins tested b12 slightly high said iron fine at 12 don’t know range

Thanks for taking the time to reply

Saggyuk profile image
Saggyuk in reply to

Iron doesn't sound fine at 12 but would need to check the full results as not sure which test this would have been - would imagine ferritin. You can ask your GPs receptionist for copies of these and post them :-)

in reply toSaggyuk

Yea I will I thought that to 12 seems low I know the last time I got tested it was 13 bottom of range but not sure what this test is

Nurse couldn’t b bothered just said your iron is fine quite dismissive

Saggyuk profile image
Saggyuk in reply to

Hmmm - get your results to double check as if 13 was bottom range, it does sound like ferritin and would mean you're very iron deficient. Check first though - they cannot say no to a print out of your own results.

in reply toSaggyuk

Yes I will thanks again. I will update

Nanaedake profile image
Nanaedake in reply to

I agree with Saggy. If that's a ferritin result it might not be fine so get a printout.

Clutter profile image
Clutter

Wildgeese,

A dose increase of 12.5mcg daily is not likely to improve thyroid levels or bring down TSH much. Even if it was sufficient it would only just have started working as it takes 7-10 days to absorb before it starts working. It will take up to six weeks to feel the full impact of the dose but as I said, I think it will be insufficient so make sure you have a follow up thyroid test so you can get a dose increase.

in reply toClutter

Oh thank you clutter I really appreciate your help . It’s so frustrating every day I get up hoping today I will feel better

But at least I now know thanks again 💐

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin D, folate, ferritin tested SINCE T3 stopped

Saw you had B12 tested few days ago

GP must test these. As direct result of having T3 stopped vitamins will have crashed

You could test vitamin D privately if they are unhelpful

betteryou.com/vitamin-d-tes...

Or direct

vitamindtest.org.uk

in reply toSlowDragon

Just done b12 / iron said my iron was perfect at 12 didn’t give me any range think il wait until next week and ask if I could have my full bloods done to include vit d I don’t want to ring again as I was on the phone Thursday and Friday about t3

They already think I’m nutts 🙁

SlowDragon profile image
SlowDragonAdministrator in reply to

Well they are the ones who took it away.

Take this is, if not done so already

And write to your MP cc your GP

british-thyroid-association...

in reply toSlowDragon

Thanks for this . I will make a call with my local politician to forward this on . Don’t know if it will make any difference as we all know how useless they all r here . But I will do it I’m not going to stop until they listen

Thank you

SlowDragon profile image
SlowDragonAdministrator in reply to

Also see Improve Thyroid Treatment campaign on Facebook

Loads of letter templates and advice on fighting this madness

in reply toSlowDragon

👍 I will thanks again

Sleep well tonight 😴

jgelliss profile image
jgelliss

Having thyroid levels well adjusted to ones needs is extremely vital to ones well being . It goes without saying . What a lot of us are missing or over looking how vital nutrients are to and with our thyroid meds . That no Dr will EVER tell you . They don't even know or if yes don't bother to share . Nutrients help our thyroids work more affectively for us . Nutrients are our thyroid meds companion . Only several hours apart .

Please read and check out *SeasideSusies* Par Excellence articles on nutrients . And *SlowDragon* very valuable articles on gluten free diet .

All the valuable information's I learned from them helped turn my life around . One does not even realize the importance of all the components like a puzzle or an orchestra that makes all the difference when it all comes together .

I'm very grateful and THANKFUL TO YOU ALL .

waveylines profile image
waveylines

Wildgeese, I was having a little read back over your posts & this has all come about since your GP stopped prescribing T3? Has this happened because of the NHS Directive? It seems clear to me that you need the T3! Amd your Endo recommended its ongoing prescribing but your GP has ignored this advice? Were you well on the T3? And what dose of T3 were you taking? With your levo or instead of?

Apologies for all the questions but am just asking as it reads as if your GP is trying to make levothyroxine fit your needs & ignoring specialist advice.

in reply towaveylines

Yes that’s right I was on 75 t4 15 t3 my doc will not listen to endo even tho he is advisingvthis

SilverAvocado profile image
SilverAvocado in reply to

This is terrible :( When this T3 was taken you should have been increased about 60mcg of T4 to make up the difference, but obviously you weren't, they just massively reduced your dose at the same time :(

And now you are bring given lifelong little increases even though your TSH is more than double the top of the range, and your freeT3 is on the floor :(

This GP is a real Muppet! At the very least you need dose increases of 50mcg T4 at a time until your levels are reasonable.

I think you need to really shop around GPs. Try every one on your practice, and if they're all just as bad find one to change to. Ideally to restore your T3 - make sure you really ham up and emphasise how well you used to be, and how ill you are now. GPs often go on how you look, so make sure not to tidy yourself up too much! But if the T3 is out of the question, you need to be properly dosed on T4!

waveylines profile image
waveylines

I believe someone sent you the link to The British thyroid association website where NHS Endocrinologists are condemning the directive from NHS England to withdraw T3 meds for all patients. This is because it can cause harm for certain patient groups. I would suggest you print a copy, write to your GP Surgery Practise Manager & express serious concerns on the effects that withdrawing this vital treatment is having on you health. I would state the deterioation in your health since this treatment has been withdrawn & tell them it is seriously damaging your health and ask for it to be reinstated urgently before it causes you permenant harm. They will have to act when they hear that.

Secondly the endo you saw was a private one. Is he a NHS Endocrinologist? If not you need to see one that is nhs & t3 friendly if poss. I would line one up ready as they may want to refer you to a nhs endo. PM me as I do know one. Alternatively I would ask the private endo if he/she knows a nhs endo who is t3 friendly. You have the right to choose who you see -anywhere in England.

I think you have to make a stand for your healths sake. As Clutter said raising levothyroxine probably will not significantly raise the ft3 as you have a conversion problem. Its your very low t3 that is making you feel so unwell. You t4 is backstacking because your body is poor at converting it to t3 thats why t4 looks much higher in the range.

Feel for you....xxx

in reply towaveylines

Oh thank you for your advice

My endo is private but he also is nhs I will ask to see him through nhs but god knows how long this will be .

I live in Belfast I’m sure you’ve heard we have no government which is an absolute disgrace while they all still get a wage and people can’t get hospital app meds etc

I don’t know what else to do I’ve spoke to two gps at my practice both saying the same -r hands r tied

Thanks you so much

waveylines profile image
waveylines

No dont move across to NHS appointments. As hes in the NHS they should respect his advice more.... seems Im wrong....lol. ☹️

Have you any other GP practises you can approach their Practise managers. And see if they will take you providing they agree to prescribe you T3 as advised by your Endocrinologist? I did this to get my ndt prescribed on nhs but its a few years ago.

Alternatively is it worth contacting your endo to tell him whats happening to you? Can he intervene? He could write a letter verifying that you are one of those patients who really need T3 & your health will be damaged if they dont prescribe. This puts your GP in a position of liability if your health is damaged. They wont like that..... Xx

in reply towaveylines

Thanks for your help and advice. My endo has already been in touch with my surgery last advising I need this plus dosage

Still won’t budge on this . I could try ringing a few diff surgery’s

Thanks I never thought of that although I’ve been with this surgery from born plus my husband has aggressive ms they know my history

But I will have to put my situation first

Thanks so much I really do appreciate your help

Sleep well tonight

💐Donna x

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