Zero energy! : I have been on 50 mg of levo since... - Thyroid UK

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Zero energy!

swtjamie profile image
27 Replies

I have been on 50 mg of levo since April i was hoping by now i would start to have some my energy back but i cant seem to have energy to even do the dishes. Can anyone tell me how long it should take before my energy kicks back in. Im completely new to this condition. Thanks in advance

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swtjamie profile image
swtjamie
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27 Replies
AngieAsh profile image
AngieAsh

Hi. I'm new on 50 mcg of Levo too, six weeks for me and I don't feel any better energy wise yet. Have you not been retested since April? We should apparently be retested evety 6-8 weeks at first.

swtjamie profile image
swtjamie in reply toAngieAsh

Ive been retested twice. My gp calls and says blood work is ok.

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

Never accept that. If you are in the UK ask your surgery for a print out of your results, make sure they contain the reference ranges. OK, Normal or Fine is just doctor speak for your result comes somewhere within the range. It's where in range that matters and that's what you need to know.

swtjamie profile image
swtjamie in reply toSeasideSusie

So i look at my records from hospital these aren't ones from my GP but may help some. I dont have all the other results as far as vitamins

swtjamie profile image
swtjamie in reply toSeasideSusie

Well im not sure how to upload lol!!!

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

You can upload one photo in the first post of your thread only. You can go back and edit your first post - click on the down arrow V

under your post and choose EDIT, upload your photo then click EDIT RESPONSE. Or type the results into a message :)

AngieAsh profile image
AngieAsh in reply toswtjamie

I know the guys on here will be able to offer advice but you would need to post your results and ranges in brackets. Normal doesn't always mean optimal. You are entitled to your results and could either ask your surgery for print outs or ask your surgery to enroll you for online access to results. Once you get them post them in a new post and you should get some good advice. It also helps if you have had vitamins tested B12, D folate and ferritin. You could ask your GP to look at those for you as they also effect energy levels and how your body converts the Levo. I haven't had my re test yet.

swtjamie profile image
swtjamie in reply toAngieAsh

Awesome thank you! I am going to get a hold of my results and share. Thank you so much

SeasideSusie profile image
SeasideSusieRemembering

swtjamie Did you have a retest 6-8 weeks after starting Levo, then an increase in dose? This should be followed by another retest 6-8 weeks later and another increase, and so on until your symptoms abate and you feel well. If you have not had these repeat tests your GP isn't following protocol.

Can you post your latest results, with reference ranges, and members can comment.

When having thyroid tests, always book the first appointment of the morning, fast overnight (water allowed) and leave off Levo for 24 hours. This ensures the highest possible TSH which is needed when looking for an increase in dose or to avoid a reduction.

swtjamie profile image
swtjamie in reply toSeasideSusie

I dont have my test results i can try to get them though. Ive never been upped the hosp put me on the levo and my gp had me get a ultrasound as my thryoids were swollen. Im thinking my gp isnt following protocols.. theyve never told me to be fasting either which what you said makes so much since i think the nexttime i do blood work i will definitely not eat or drink.

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

Here in the UK the Data Protection Act gives us the legal right to our test results, so don't let anyone tell you that you can't have them, they would be breaking the law.

The advice about fasting, leaving off Levo, etc., is a patient to patient tip. Most doctors say it makes no difference. However, TSH is always higher early morning and it lowers throughout the day, it also lowers after eating. You'll get more, honest information from members here who have experienced every aspect of treatment (or non-treatment) of thyroid disease than from most doctors who know very little about it!

Oh, and you can have water :)

swtjamie profile image
swtjamie in reply toSeasideSusie

I live in the US but i was at dr with my fiance yesterday and they said they would set him up for their web portal which they did i was unaware they done that until yesterday so i think i need to call them

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

Ah, sorry, didn't realise that :)

swtjamie profile image
swtjamie in reply toSeasideSusie

I think i need to move to the UK you people are very smart and helpful lol. Thank you so much

AngieAsh profile image
AngieAsh in reply toSeasideSusie

Lol you popped up while I was typing Susie. I shall leave you to it :)

SeasideSusie profile image
SeasideSusieRemembering in reply toAngieAsh

Angie, I'm sure your contribution is welcome and helpful :)

swtjamie profile image
swtjamie

Ive been to emergency room and each time these were my results for my TSH which im not sure what it should be. I was put on the levo in april so i can see my results have changed

March 27- 10.39

May 28- 8.93

July 28. 5.33

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

Do you have the reference ranges? Ours here vary from lab to lab but we often see something like 0.2-4.2 for TSH. The aim of a treated hypo patient is for TSH to be 1 or below with FT4 and FT3 in the upper part of their respective reference ranges if that is where you feel well.

By the look of your latest TSH, you are very much undermedicated and need an immediate increase in your Levo of 25mcg, probably followed by a couple more increases until your symptoms abate and you feel well.

swtjamie profile image
swtjamie in reply toSeasideSusie

Its says standard range is 0.27 to 4.20 ml

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

So your TSH is still far too high. You need that increase in dose and you need to aim for around 1 to see how you feel.

swtjamie profile image
swtjamie in reply toSeasideSusie

Ok im going to get in to see my GP asap. I kinda wish she would send me to a endo dr. She mentioned not long ago if my nodules got any bigger she would. They are only a cm. I cant shake this no energy. I work and have a house i need to keep up with and i just cant. Makes me very sad

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

We need our vitamins and minerals to be at optimal levels for thyroid hormone to work. See if you can check yours

Vit D - 40-60ng/ml (according to the Vit D Council, I think that's the unit of measurement in the US, we use nmol/L and ours is 100-150)

Ferritin - half way through it's range

Folate - at least half way through it's range

B12 - An extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

swtjamie profile image
swtjamie in reply toSeasideSusie

Ok going to see if she has checked any of that. Ive been wondering if i could take b12 for maybe some energy but im scared

SeasideSusie profile image
SeasideSusieRemembering in reply toswtjamie

Don't be scared of B12 - it is water soluble so you can't overdose, it gets excreted out. And if you do take B12, we need to take a B Complex as well to keep all the B vitamins in balance.

swtjamie profile image
swtjamie in reply toSeasideSusie

Thank you so much for all your advice. I wish i would have found yous sooner

Dexterpuppy profile image
Dexterpuppy

I've not been asked to retest since diagnosed in march my doctor doesn't like me as I insisted to see an endo for hashimotos she initially referred me to wrong people so waited 3 moths to find out and when I asked her to be referred to the right people she went mad about the cost involved etc so I offered to pay all the costs and backed her into a corner, so she just doesn't bother with me now. I've upped myself to 100 levo but do t feel any different at all ? Still chronically exhausted gaining weight and all the other stuff but exhaustion is the worst. Hope you get sorted honey, sorry my reply isn't very encouraging x

swtjamie profile image
swtjamie in reply toDexterpuppy

Thank you Dexterpuppy , is there any way you could switch drs? Ive been thinking about doing that. She should be retesting your blood more frequently. Ive been thinking about going to a endo dr she said if my nodules were bigger than 1 cm she would refer me.. they are 1 cm as of few monthsago. I hope you get better soon.

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