teva or Levo or unrelated ?: I was started on t... - Thyroid UK

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teva or Levo or unrelated ?

meme profile image
meme
22 Replies

I was started on t3 and t4 combo 5 and a half weeks ago.

After a week the IBS type symptoms started. Lots of bloating, gas, pain constipation interspersed with very loose bowels.

Other symptoms since then, nausea, dry itchy skin, thirst, hair loss, lack of energy, tinnitus and couple of dizzy spells and a feeling of being unstable when walking.

I had bloods take yesterday and they have been seen by the Endo but not given to me. He reports( via his secretary ) that my symptoms since starting the t3/4 combo are not related to my thyroid or the new medication. He has now written to my GP and asked her to investigate my new symptoms.

I have been taking 15mg Roma t3 and 75 mg Levo. Accord 50, Teva 25. Prior to that I was taking 1 3/4 to 2 Thyroid S. I had none of the above symptoms.

I am not due to see him for another 8 weeks.

Speechless.

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meme
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22 Replies
Jaydee1507 profile image
Jaydee1507Administrator

I believe it's very hard to accurately equate doses of NDT and T4/T3 combo therapy so it may well be you've taken a drop in hormone levels. I would also suspect the Teva and the only way to know would be to get a different brand prescribed. Try and get them to write on your prescription (NOT TEVA).

Post blood results when you get them.

meme profile image
meme in reply toJaydee1507

new bloods from 9 Feb just received.

TSH 0.05

Was 0.02 on NDT Dec 22

T4 15. (11-23)

Was 16.10 on NDT Dec 22

T3 5.56 (3.1-6.8)

Was 6.15 on NDT Dec 22

Is this drop why I feel so rough?

Endo has said both set of results are similar.

Jaydee1507 profile image
Jaydee1507Administrator in reply tomeme

Well they are similar but they aren't the sme at all. Big difference! Did it make any difference switching the Teva 25mcgs?

Your TSH has gone up a bit.

FT4 %'s 42.5 > 33% = 9% drop

FT3 %'s 82.4 - 66 % - 16.4% drop

I know what your Endo has done, he's eye balled the numbers and thought they looked similar. Show him the percentages and see what he says.

It's really irritating when they declare none of your new symptoms are due to your different thryoid hormone., Completely head in the sand stuff.

meme profile image
meme in reply toJaydee1507

Thank you for the calculations, most helpful and illuminating .

I feel less nauseous without Teva.

Must admit that I have been taking aprox 12 mg extra of Levo every other day since I got the t4 result last week. (50 Accord cut in 4). The T3 are capsules, so cannot split. Does that sound reasonable or could I take more ?

I still feel rather unsteady at times and skin is still dry and tinnitus still a nusance. Bowels and associated pain much improved with extra 12mg every other day.

I do feel a little better with the extra.

I will write to Endo with your calculations and ask for a rise before I am tested again. I don’t want to get on his wrong side at this early stage in our relationship.

So good to have people on my side. Thank you.

Jaydee1507 profile image
Jaydee1507Administrator in reply tomeme

You should be able to do 12.5mcg levo extra a day. Previously your T4 was low due to low levels in NDT but on this combo you will be able to get it, and may need it a bit higher. I'm not sure if 25mcgs a day would be too much.

meme profile image
meme in reply toJaydee1507

So TSH is a better measure !!!??

Letter from Endo .

White
Jaydee1507 profile image
Jaydee1507Administrator in reply tomeme

This letter is the epitome of why so many thyroid patients continue to suffer poor treatment. Personally I'd be taking things into my own hands.

meme profile image
meme in reply toJaydee1507

That is what I feel but he has the power to stop the T3 which he is prescribing.

If I add more Levo without telling him and do well, he will think his treatment plan was right all along. And may even reduce the T3 as my “all important” TSH will have risen .

I did hope to come off NDT due to the continuing price rises, supply and quality problems.

I have see my GP about my new symptoms. GP may offer a solution.

Jaydee1507 profile image
Jaydee1507Administrator in reply tomeme

Roseway labs offer a consultation and prescription service thats reasonably priced as an alternative. It's a difficult situation.

meme profile image
meme in reply toJaydee1507

for T3?

Jaydee1507 profile image
Jaydee1507Administrator in reply tomeme

Yes. See this post. healthunlocked.com/thyroidu...

meme profile image
meme in reply toJaydee1507

thank you.

tattybogle profile image
tattybogle in reply tomeme

he's just trotting out the same old lazy 'status quo ' about TSH

and not bothering to use his own brain .

"unfortunately there is no data to suggest how soon after the intake of T3 levels should be measured" ....... bollocks

the is plenty of data showing what happens to fT3 levels in the blood following the ingestion of a dose of T3.

anyone can find a graph showing it if they are interested enough to look it up . So base on that data it is possible to deliberately check for the fT3 at it's 'peak' post dose .. or it's mid point . or it's lowest point , depending on what part you are interested in.

(just the same as it is possible to do for for testing fT4 after taking Levo)

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

" and because of the short acting nature of T3 we do not use T3 as routine replacement methodology" ...... so what ?

Just because T3 is not in 'routine use' that doesn't mean an endocrinologist should not be aware of how to use it / or measure it ..... that's just a cop out .

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

"objectively" this and "objectively " that .....

objectively ..... your new dose of T4 + T3 combo is giving you demonstrably lower level so fT4 and T3 than your previous dose of NDT.

objectively .... your TSH ( which he believes is infallible ) confirms this ,by being a bit higher.

objectively .... you have some symptoms you didn't have before this change.

so objectively...... it's apparent that he is not looking very skilfully at the information he's been presented with .

Humans are sensitive to even small changes in thyroid hormone levels ... if they were not, the human body would not have bothered evolving such a complex system of HPT axis & deiodinases to control them so minutely .. and we wouldn't need an (allegedy) skilled endo to prescribe and monitor them ,.... we could just go down the C0-0P and buy some with the Vitamin C tablets and Weetabix .

I hope you are not having to pay this bloke too much money to trot out this sort of tripe.

meme profile image
meme in reply totattybogle

Can I take you to my next appointment please😇. ( he is NHS so the tax payers are forking out for his “wisdom”).

I will try and remember all of this when I see my GP.

Most most helpful. Thank you so much tatty.

tattybogle profile image
tattybogle in reply tomeme

i'd rather not be in the same room with him if you dont mind . i suspect it might be detrimental to my mental health. mind you if you do ever decide to cut him loose and email him my response to his esteemed letter, i won't mind at all :)

TiggerMe profile image
TiggerMeAmbassador in reply totattybogle

👏👏👏👏👏(round of applause)

SlowDragon profile image
SlowDragonAdministrator

I would agree with Jaydee1507

First step is to get rid of Teva

Cut Accord 50mcg tablet in half to get 25mcg

You’re legally entitled to copies of your test results

What are your most recent vitamin results like

meme profile image
meme in reply toSlowDragon

2022, vit D 113

2021, B12 636

Folate > 20 (2- 18.7) (usually high)

Ferritin 57.3 (20.00-250) I did start gentle iron intermittently ( gives me cramps) but stopped to try the Levo lio combo.

Most results are over a year old. GP not interested in retests.

SlowDragon profile image
SlowDragonAdministrator

yes you need to retest vitamin levels at least once a year

Do you have autoimmune thyroid disease (hashimoto’s)

Are you on gluten free/dairy free diet

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

meme profile image
meme

I do not have Hashimoto’s and am not gluten free and eat small amounts of fermented milk( yoghurt , kefir ) with my breakfast.

I cut out the Teva and took half the 50 Accord in todays dose.

I will get vits tested in a few weeks. I could ask the Endo if he will when I see him in 6 weeks. My GPs don’t think it’s necessary.

I think my ferritin was low at the last test but GPs say it’s in range and fine.

Suesku56 profile image
Suesku56

It could be that you are allergic to the fillers in these tablets. Speak to your pharmacist. I can not tolerate Teva.

Sweetpea1157 profile image
Sweetpea1157

Hi meme , sorry to hear that you are having problems, I really am not the best person to ask here ,as I am too suffering at the moment as have been diagnosed with a second autoimmune disease, so my t3/t4 also is in the process of being updated , but , I would agree with most of your replies, but I would say the best people to ask are slowdragon and grey goose, as they have helped me so much in the past . Take care , hope you get the help you're needing and feel much better real soon .

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