Hashimotos fatigue : I was given Novothyral... - Thyroid UK

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Hashimotos fatigue

Rach19 profile image

I was given Novothyral 2 years ago by a FM doc but recent tests showed antibodies so saw an endocrinologist. She diagnosed hashimotos but said the Novothyral dose isn’t right. I started taking levothyroxine straight away about 2 weeks ago but I’m still waiting for my order of T3 to come through, since it’s hard to get hold of… she will test again in 8 weeks after being on both. Since taking T4 I’ve been feeling worse and worse- fatigue on another level, I’m worried the T4 is actually making me worse. I’m sleeping well but feel like I can’t move and I’m having increasingly strong coffees to survive (i know it’s not ideal but I’m a special needs teacher- it’s a tough job and I have to be able to function) my FM testing also showed very low cortisol and the endo will test this in 8 weeks time too to see if I have adrenal insufficiency/ Addisons and would benefit from cortisol. I’m currently trying to follow a metabolic diet, and cutting out inflammatory produce, but frankly it makes no difference what I eat or drink I still feel awful!! I’ve started taking b complex, vitamin A and magnesium…. Does anyone have any suggestions of what I could do to help? Do those supplements which claim to support conversion of T4 to T3 do anything? Should I maybe stop taking the T4 until my T3 arrives? Many thanks for any suggestions from an utterly exhausted teacher!

37 Replies

Since taking T4 I’ve been feeling worse and worse- fatigue on another level, I’m worried the T4 is actually making me worse.

You were taking Novothyral which is a combination of T4 and T3 (Levothyroxine and Liothyronine). I don't know how much T3 and how much T4 each pill contains. Can you tell us? And what dose were you taking? Also, if you could post the results you got that your functional medicine doctor didn't like it would be helpful.

You will be suffering from the lack of T3. It is possible your Levo is making you worse as well - different brands suit different people. Which brand and dose are you taking?

Rach19 profile image
Rach19 in reply to humanbean

I’m not even sure of results/ doses any more. It was the endocrinologist who didn’t like the Novothyral that the FM doc put me on- she said the ratio of T4/T3 wasn’t accurate for my results and I needed separate tablets- easier said than done in the UK!! I’ve just taken a Novothyral out of desperation as I feel like I’m going to collapse but I can’t sleep- I’ve just had lots of rage and tears and I feel premenstrual even though I’m nowhere near ovulation or period… I think I’m having a really bad reaction to lack of T3 for sure, so I’m going to ignore the endocrinologist and just take the combined one until my prescription for T3 comes through, god knows when, then I’ll swap over to the separate tablets. I’m taking levothyroxine for T4 but yes I don’t think it’s doing me any favours at all, it seems to be making me worse. I’m wondering if I perhaps ONLY need T3

greygoose profile image
greygoose in reply to Rach19

Well, it depends how well you convert the T4 to T3, doesn't it. Novothyral, I think, is 100 mcg T4 and 20 mcg T3 in one pill. How many pills were you taking. Even if it was only one pill - I used to take two - lowing that 20 mcg T3 is bound to have a devastating effect.

Without seeing your labs - and, by the way, in the UK you have a legal right to have a copy - it's difficult to understand why the endo didn't like you taking it, and why he couldn't just adjust your dose of Novothyral. But, so many doctors don't like that sort of thing on principal. I think you're right to go back to the Novothyral if you're not getting on with levo only. But, that doesn't automatically mean you need T3 only. How did you feel on Novothyral before the endo started meddling?

Rach19 profile image
Rach19 in reply to greygoose

Thanks. I’ve been reading on Thyroid UK about the DIO 2 gene testing … I’m almost convinced I have that genetic issue since I am having such an extreme reaction. I think I will get the genetic test from regenerus labs. I do have my results but they were both so long ago now they won’t be that relevant. I wasn’t much under and my TSH was normal so technically considered subclinical, but I think I completely lack the enzyme to convert and it causing me a whole host of medical issues. I think I’ll continue the Novothyral until my T3 prescription is delivered, hopefully it won’t be too long

greygoose profile image
greygoose in reply to Rach19

The DIO2 gene test will not tell you whether you can convert well or not, it will just tell you if you are likely to be a poor converter.

And your extreme reaction to dropping the T3 you were taking, cold turkey, is only to be expected, and not an indication of a metabolic problem. If you are only on 50 mcg levo, even if you were a brilliant converter, it wouldn't convert to enough T3, the dose is too low. And, because it's such a low dose, you're having problems with it. None of this is hard and fast evidence of anything. It's too soon to come to any conclusions.

So I was on 100mcg a day of novo

It can't be 100 mcg of novo is novo is comprised of 100 mcg T4 and 20/10 mcg T3. Do you mean you were taking 1 tablet?

What were the hyper symptoms you felt? It's often difficult to separate symptoms into hypo and hyper, but did you feel better when you cut the tablet in half?

I do have my results but they were both so long ago now they won’t be that relevant. I wasn’t much under and my TSH was normal so technically considered subclinical

Are you saying that you haven't been retested since you were diagnosed?

Rach19 profile image
Rach19 in reply to greygoose

Yes, she wouldn’t retest until I’ve been on the new dosage for 8 weeks… and this is all privately anyway as the NHS don’t want to know as my TSH is normal. I’m doing the genetic test mainly to try and prove there is a genetic cause of my PMDD to be honest… poor T3 = poor regulation of progesterone/oestrogen/DHEA etc = ED symptoms like endometriosis and PMDD, but stupid useless uk doctors don’t see the link!! (Despite heaps of evidence from US)

greygoose profile image
greygoose in reply to Rach19

But, all the time you were on Novo, you should have been tested at least once.

Even so, it would be interesting to see your original results, because I'm wondering if there's a pituitary problem.

Besides, how can this endo say that the dose isn't right for you, or whatever she said, if she hasn't seen any blood test results from while you were taking it? Or did she think that your original results were from when you were taking it? There's something not quite right, here.

Rach19 profile image
Rach19 in reply to greygoose

I was not as it was a private hormone specialist who then ghosted me and now refuses to give me an appointment- her thyroid testing was £500 a pop, I couldn’t afford it. I did actually post my results here several years ago when I first got them and I’m sure it was you who replied then! I’m so grateful for your help! I will find the results and post again. So my endocrinologist was recommended to me by my gynae and apparently she’s a real expert… I’m starting to think she may not be ….

Rach19 profile image
Rach19 in reply to greygoose

First set of results over 2 years ago- then prescribed the Novothyral

Results
Rach19 profile image
Rach19 in reply to Rach19

2nd set done Jan 22 … (different company) everything too high hence told to reduce meds… did and felt awful. Also found antibodies 2nd time round but not first, FM doc thought antibodies were caused by dosage being too high… endocrinologist said that’s not possible and it was definitely hashimotos

Results 2
greygoose profile image
greygoose in reply to Rach19

Well, your FT3 is too high, but your TSH and FT4 aren't. But, how long was the gap between your last dose of Novo and the blood draw? And what time of day was the blood draw?

Rach19 profile image
Rach19 in reply to greygoose

I can’t remember in all honesty, it was a while ago… but you’re right, that of course could have affected it! I definitely need to investigate this further - Thankyou so so much for your help

greygoose profile image
greygoose in reply to Rach19

You're very welcome. :)

tattybogle profile image
tattybogle in reply to Rach19

These results from Jan 22 would explain why the endo said the proportions of T3 : T4 in novothyral were wrong for you ..... it was clearly giving you too much T3 compared to T4....... was that test done when taking one tablet of novothyral ?.

The fact that you felt so lousy after the change to just 50mcg levo , is easily explained by the fact that is was such a big reduction in overall thyroid hormone dose .

It doesn't mean you need to have T3 /or T3 only... it is how everyone would feel if you chopped their T4 hormone dose in half. (and removed 20mcg T3 at the same time )

50mcg T4 (from Levo )was obviously not going to be enough to replace 100mcg T4 +20mcg T3 .

Seems illogical to me that endo prescribed 50mcg Levo ... surely those results from novothyal of (100mcg T4 / 20mcg T3) suggest that you aim to would start at approx the same amount of T4, and a bit less less T3 than was in novothyral ... so why not prescribe something like eg 75 or 100mcg levo + 5 or 10mcg T3 ?

if T3 wasn't available for a while you should have been advised to take at least 100mcg levo. not left to struggle on just 50mcg while you waited for the T3 to turn up ....( where has it been .. ? )

Another potential option you could consider to get better proportions of T4:T3 than the novothyral gave you , is taking less Novothyral and adding some levo to it .... eg half a novothyral tablet (50mcg T4/ 10mcg T3) + ? approx 50mcg levo

Rach19 profile image
Rach19 in reply to tattybogle

Yes I did wonder about doing the Levo + novo … actually I was taking half a novo a day, hence the 50 Levo I suspect… but I think you’re right, perhaps it not enough of the Levo and the high T3 dose was causing the hyper symptoms… maybe I DONT have too much of a problem with conversion I was just completely wrongly medicated! Goodness me I love this site - Thankyou so so much… clearly more investigation/ experimentation with dosage is needed…

greygoose profile image
greygoose in reply to Rach19

Oh my goodness me! And a dozy NHS GP told you you were 'sub-clinical'??? Those results scream Central Hypo! Low normal TSH, very low FT3, well below-range FT4. Honestly, they haven't got a clue!

Rach19 profile image
Rach19 in reply to greygoose

Really?? Thank you SO much… I KNEW I wasn’t right ☹️☹️☹️ So I definitely do need medication in some form!!

greygoose profile image
greygoose in reply to Rach19

Definitely, yes.

Not only that, you need further testing of your pituitary. Because the pituitary doesn't just make TSH, it makes a lot of other hormones, too. And, they could all be low.

Rach19 profile image
Rach19 in reply to greygoose

How do I do that though? I’ve had a brain scan - all normal. But hpa axis issues are very implicated in low cortisol and PMDD too so I’m sure there are problems with that… I just don’t think it’s possible to figure it out in the uk??

greygoose profile image
greygoose in reply to Rach19

A pituitary problem won't necessarily show up on a bran scan. Depends what the problem is. And, of course, the problem could be with the hypothalamus, and not the pituitary.

You need to do your homework, learn as much about it as you can, and then have a conversation with your cluless endo. She can do the necessary tests to find out if there's a problem with the pituitary.

Yes, low cortisol can be caused by pituitary problems. The adrenals need stimulus to make cortisol just as the thyroid needs stimulus to make thyroid hormones. With the thyroid that stimulus is the TSH, with the adrenals it's ATCH. So, that is one of the hormones that needs testing.

Have you ever had any sort of cortisol testing?

Rach19 profile image
Rach19 in reply to greygoose

Yes- she is doing the ATCH test is 8 weeks once I’ve been on the thyroid meds for a while. I’ve had Dutch cycle mapping which showed v low cortisol and also low adrenaline and melatonin which she did agree showed a problem more generally with hormone production/ regulation. I will definitely speak to her more about pituitary testing. It’s highly implicated in PMDD symptoms to I’ve suspected it for years but I’ve only ever seen gynaes before who just want to chop out my reproductive organs… I’m sure there’s a better option than that! Thank you so so much.

greygoose profile image
greygoose in reply to Rach19

You're welcome. :)

humanbean profile image
humanbean in reply to Rach19

It's too early to say that you need T3 only. You've quoted very few results and there isn't enough evidence for anyone to say yes or no to T3 only.

According to helvella 's encyclopedia of thyroid medicines :

dropbox.com/s/wfhrlmb5983co...

Novothyral contains either 100mcg T4 plus 20mcg T3 OR 100mcg T4 and 10mcg T3, depending on which country it comes from.

For a doctor to say that the amounts of T4 and T3 are wrong for you, I'd like to know what they are basing that on, and whether or not that decision by them was affected by your symptoms. When it comes to anything thyroid related doctors rarely pay attention to symptoms they only look at blood test results.

What dose of Levo are you on now, and what dose of Novothyral were you on before your treatment was changed?

Rach19 profile image
Rach19 in reply to humanbean

So I was on 100mcg a day of novo but was getting hyper symptoms so split the tablet in half… apparently the split is 20 lio/100 Levo according to the box. I think it was the hyper symptoms on such a low dose which made her think the dosage was wrong, along with the results. I do have them somewhere but they were from ages ago now - I’ll try to find and post if I can. For the last 2 weeks I’ve been taking 50mcg daily of just Levo as the lio is not available yet, and I feel horrific. I think you’re right - it’s too early to say if I do or don’t need the T4 - both were low on testing. I’ve had some kind of almost metabolic reaction which mirrors exactly my PMDD symptoms… I’ve long believed PMDD women may lack the d enzyme for conversion… I’m going to see if I can test this theory,

SlowDragon profile image
SlowDragonAdministrator in reply to Rach19

For the last 2 weeks I’ve been taking 50mcg daily of just Levo as the lio is not available yet, and I feel horrific

So this endocrinologist is a sadist…

Far to large reduction to reduce levothyroxine by 50mcg and T3 by 20mcg

Utter madness

Any thyroid reduction has to be done extremely carefully…..maximum reduction ever of 25mcg levothyroxine

Or

Max reduction of 5mcg T3

….and never reduce both levothyroxine and T3 at same time

Never ever agree to reduce dose unless Ft3 is above range

Always test thyroid levels early morning, ideally before 9am and day before test split Novothyral into 2 or 3 smaller doses spread through the day and last dose approx 8-12 hours before test

ESSENTIAL To test vitamin D, folate, ferritin and B12 at least once a year

Low vitamin levels badly affect ability to use thyroid hormones

it’s too early to say if I do or don’t need the T4 - both were low on testing.

If Ft4 and Ft3 were low in range you were UNDER medicated and in need of dose in levothyroxine

humanbean profile image
humanbean in reply to Rach19

To have gone from 100mcg T4 and 20mcg T3 per day down to 50mcg T4 only, even if it is just temporary and can't be avoided, is a massive change.

Thyroid hormone changes should always be done slowly, and it is important to only change one thing at a time i.e. either the T4 or the T3 but not both.

Your doctor should have provided a prescription for Novothyral AND for the Levo and T3, so you could switch when you had the T4 and T3 you needed.

Personally I would never take a combined pill of T4 and T3. I like the freedom to change the proportions of each to what suits me, not the manufacturer or a doctor.

Rach19 profile image
Rach19 in reply to humanbean

Thankyou so much… I still have the combined so I’ll start taking it again until I have the separate. I’d prefer separate of course but unfortunately it’s not always financially going to be option… currently my Novothyral is £40 a month… the 100mcg of lio was £250 a month… and in the week it took me to decide whether to go for it or not, the price increased by another £50… but they’ve ordered me 20s to split at £50 a month … fingers crossed. I’m considering doing the genetic testing as I’m wondering if I can prove I don’t make the enzyme properly if I can get some kind of financial support for it. The extremity of my reaction clearly means I need it.

SlowDragon profile image
SlowDragonAdministrator in reply to Rach19

the 100mcg of lio was £250 a month… and in the week it took me to decide whether to go for it or not, the price increased by another £50

That’s a ridiculous price

Suggest you cancel

I assume you meant 10mcg (not 100mcg) T3

Private prescription enables access to Thybon Henning 20mcg tablets T3 at 50p-60p per tablet

List of pharmacies

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

Rach19 profile image
Rach19 in reply to SlowDragon

Thanks so much. I’ve ordered the £50 20 tablets to split into 4 as advised by my endocrinologist but I’ll have a look at the above too, hopefully that’ll be a better option … yes I meant 10 sorry!

Jeppy profile image
Jeppy in reply to Rach19

Please say how you get on with it. 😊 prof john Studd now Late Prof, writes on his website about it. Worth a read Reproductive Depression, And even ignorances still going on that women get a bipolar label at menopause due to common menopausal mood change for some women

I have a vague theory although it’s not backed up with my lack of intelligence, that these women have autoimmunes, Iv noticed that when we have never perspired much type of woman, we don’t get hot flashes ( how can we🤔) or night sweats etc but get more cognitive symptoms

Then when meno untreated you see the thyroid hormones going pear shaped but of course you don’t know until you feel half dead for yrs, as GPs say it’s normal TSH up to 4.7……

Back to you sorry

Rach19 profile image
Rach19 in reply to Jeppy

Yes professor Studd was good and certainly pioneering, although there are actually now far more knowledgeable experts than him, in my opinion. Gynaecologists in general are not best places to deal with PMDD … I’ve had every ‘standard’ treatment going… pills, antidepressants, chemical menopause, one ovary removed, hrt… progesterone therapy with bio identical progesterone is by far the best treatment in my (extensive) personal experience and having been active on many forums, however even that is a sticking plaster over the root cause. PMDD is most definitely a endocrinological/metabolic/neurological issue involving most likely the thyroid and hpa axis problems. One expert told me the reason it’s considered a ‘syndrome’ is not its multiple symptoms, but in fact it’s multiple causes… which makes sense although I do wonder if it is simple a genetic lack of conversion,.. because most people only get T4 or TSH tested they may never know if they are a poor converter, genetically or otherwise! I’m intending to get the DIO polymorphism genetic test linked on the thyroid uk website… no idea if it’ll show anything, but I’m determined one day I will find a genetic component to PMDD!

Jeppy profile image
Jeppy in reply to Rach19

Good luck I admire your perseverance And you are intelligent to take it all on board

For me I’m at the point I just need to feel better it has to be better than this

Jeppy profile image
Jeppy in reply to Rach19

Yes. Multiple causes sounds right. Not just one thing Even stress itself for some plays a part

I just want to feel like a did for 3 weeks in a month that would suit me fine instead of existing in a constant pmt

🤔 I was surprised you say bio progesterone helpful as when followed prof Studd regime I felt great on bio ostregen then like a bomb hit me on the progesterone.

Rach19 profile image
Rach19 in reply to Jeppy

So it actually won’t have been the progesterone which caused you problems probably- it will have been the oestrogen. Pms is probably caused by oestrogen dominance. When the ratio of E and P is wrong in the follicular phase, we get pms/PMDD in the luteal phase. You probably weren’t on anywhere near as high enough a dose of progesterone which caused ‘oestrogen kickback’ where your oestrogen increases in a fight to stay dominant, and the symptoms are actually from that… at least that’s the current thinking from most US specialists

Jeppy profile image
Jeppy in reply to Rach19

Thanks. Very interesting indeedyAs now Feeling ghastly on hrt combined patch but was great at first, it’s affected my thyroid numbers the TSH has shot up to 7.5

Lots of luck keep us posted

Jeppy profile image
Jeppy in reply to Rach19

🤔. If it is this link, can anything be done ?Maybe if not it’s just to deal with the symptoms rather than route cause, but I’m like you, all for root causes! 😊

Jeppy profile image
Jeppy in reply to Rach19

Ps I meant re the conversion enzyme( I’m a poor converter too). How do you test this please?

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