I think I'm intolerant to levo, I've been on levo consistently years, I noticed last year that my hypo symptoms were getting worse and had changed slightly, fatigue was deepening, depression was increasing as was anxiety, my joints were aching like never before, I was puffy and my legs were swollen. I stopped my Levo for a few days my side effects disappeared i felt fantastic my Endo was amazed and completely changed his tune with regards to my treatment he believes I may well be intolerant to levo, he wants me to try every tablet form of levo before trying liquid levo and possibly t3 if I'm unable to tolerate that either. I'm on brand number 5 of levo and my side effects have returned over the last few days, I don't think there are any more that I can try. I've been referred to a professor by my endo for a second opinion. Does this sound familiar to anyone?
Intolerant to Levo?: I think I'm intolerant to... - Thyroid UK
Intolerant to Levo?
Yes very familiar!
Please Yellow Card your reactions. The more that do this the more they have to see that Levo does not suit everyone x
Has no-one considered that maybe you're just under-medicated? When did you last have labs? What were the results?
I think the professionals would never think of under-medication. They are just more concerned of not being reprimanded for prescribing what may help the patient to recover.
I agree I have been telling my dr that I still don’t feel well I have had a sore throat with neck pain and ear pain all kinds of imaging done with blood work and he does not take me seriously
They are mostly ignorant and I doubt they get the training our 'old-fashioned' doctors had.
No blood tests then, just knowledge of clinical symptoms and patients given a trial of NDT (natural dessicated thyroid hormones) which was recently withdrawn due to False Statements made about it by the Professionals, despite it saving lives since 1892 onwards.
Do you follow this advice:-
Make the earliest appointment for the blood test. It is a fasting one (you can drink water) and don't take levo until after blood draw. This helps keep TSH at its highest as the aim is a TSH of 1 or lower. Also request B12, Vit D, iron, ferritin and folate. Everything has to be optimal.
Thanks fir the response I have had a sore throat ear and neck pain for three months I have had ct scan ultrasound multiple blood tests and they cannot figure out what’s wrong my gastro seems to think it’s sub acute thyroiditis but the endo won’t listen to me
Labs back in September were all ok can't remember off hand but tsh was just below 1 ft4 was about 21 (12-22)
Just testing TSH and Ft4 is completely inadequate
Essential to test Ft3 as well, plus vitamin, folate, ferritin and B12
What vitamin supplements are you currently taking
Are you on strictly gluten free diet
Some people cannot feel well on levothyroxine at all (I am one) and maybe it is due to it being synthetic or that we are unable to convert it to T3 - that's only a guess. We are aware thousands do fine on levo. I must also state I'm not medically qualified.
I think you've proven that levothyroxine doesn't suit you but you have to go a 'tester' of every T4 available. How awful when being treated as a guinea pig and the professional is nervous of prescribing anything but levo (as advised by the BTA).
They have absolutely no idea of the hell patients are put through when their body doesn't respond as they imagine. I think it approx to putting oil in a petrol tank
It is only because T3 has become so expensive for the NHS they are trying 'this and that' instead of concentrating upon relieving symptoms.
We didn't want to have a dysfunctional thyroid gland.
They even had the temerity to witdraw the oldest proven replacement NDT (first taken in 1892) and many patients restored their health and did not die, as they did previously.
The experience of 'feeling better' after stopping levo is a common reaction. A lot of people feel great for several weeks or even months after stopping all synthetic treatment. It isn't known why this occurs. The body is very clever and tries to maintain homeostasis and you still have T4 hormone in your body for several weeks.
You may find yourself losing weight, having more energy, experiencing a clearer mind and even sleeping better. Many people get fed up and stop taking their meds on purpose just to get this reaction. I used to. Your Endo should know this.
Eventually however, your body will not be able to keep it up and you will crash, that is because (apparently) the thyroid shrinks once T4 therapy has been well established. That is why thyroid medication is given medical exemption status. Because usually once you have been taking treatment for a while, the body is unable to manage without hormone replacement.
Now if you find you feel ill on levo no matter how high the dose is raised or you feel worse on it than you did beforehand, then you have the right to try an alternative like liquid levo, or combo T4/T3 or NDT. For some reason when it comes to thyroid treatment one must jump through tons of hoops before exercising the right of patient choice. But I see no point jumping from brand to brand to please your Endo's bias towards monotherapy.
That said it could be the case that it was not raised high enough and people do report feeling much better on levo when opitimally dosed. So what dose are you taking?
Hi, im on 175mcg my thyroid is non functioning it's tiny, dark which indicative of this. (Shown on my last u/s). I had my bloods done a few weeks ago after being back on the levo about 6 weeks and my tsh was 48 so I'd hate to know what it was before I went back on it. I know I'm not optimal yet but even when I am optimal I feel no better unfortunately I think I've come to the end of this road and it's time to explore another avenue of treatment
Yes it sounds like it if 175mcg doesn't help then its doubtful more will, I agree. Please don't feel forced to jump through all these useless hoops though.Push for the liquid levo or it might be you'd be better on NDT. If levo makes you feel rubbish even doing a combi T4/T3 may not help but worth trying.
It will be trial and error for a while going forward.
Edit: but it sounds, based on your scan results that some T3 in some form is needed in your case.
NDT has been withdrawn through False Statements made about it by the professionals in the UK. Despite it prooving its success from 1892 and still does today. Why would they want to withdraw such a replacement hormone. I think they just wanted to get everyone to take levothyroxine, and I just cannot take levothyroxine like many other hypo sufferes. I had so many visits to the cardiologist and he was thinking of putting an implant in my heart to 'see what was going on'. Around that time, T3 was added to T4 and I didn't need an implant as my heart beats became normal. I then took T3 alone.
These people.......I was under the impression that Armour was still prescribable on NHS? So it's not?
Do you have to keep strictly sure to take the T3 at set intervals throughout the day?
No I take one daily dose when I get up and wait an hour before taking breakfast.
I followed one of TUK's Advisers who was an expert in the use of T3. He'd never prescribe levo - only NDTs or T3 alone for people who were resistant to 'thyroid hormones'.
I will look for Dr Lowe's advice and will give you a link. He resigned his licence so that he wouldn't be pursued by the authorities and so he could bring good health to his patients.
" because (apparently) the thyroid shrinks once T4 therapy has been well established. That is why thyroid medication is given medical exemption status. Because usually once you have been taking treatment for a while, the body is unable to manage without hormone replacement."
I read a chinese study a while a go ,( but unfortunately i cant remember where it was to give you the reference, sorry )
Anyway, the question they'd asked was "does the thyroid atrophy because of being on Levo , or is it the hashimoto's Autoimmune aspect that causes the shrinkage ?"
And the findings were that patients without autoimmune disease had the same thyroid size measurements even after many years of thyroxine replacement, wheras the ones with hashi's had smaller thyroid sizes after years of Levo .
So it seem seems the hashi's destructive process, not the Levo is causing the shrinkage.
I think the reason for the free prescriptions is because hypothyroidism itself is usually permanent and can have serious life threatening consequences if left untreated for many years...... not because taking thyroid hormones causes you to need to keep taking them forever.
Which is a bit pedantic i know , and i apologise.
No need to apologise, it's good to get updated (and more importantly correct) information, thanks x
i'd agree with what you say about many many report of people feeling better briefly when they stop taking any kind of thyroid replacement, and that feeling could be misinterpreted as proof that there was an intolerance to that brand , but like you i think it is likely that the body sensed the drop in replacement , and perhaps the rising TSH gives whatever is left of the thyroid a big kick , and /or the T4 that is left over in the body due to it's long half life , gets a helping hand to convert better to t3 due to the effect of TSH on the deiodinase's that are responsible for conversion..... but it can't last if the thyroids not up to the job, which it probably isn't or they wouldn't be on Levo in the first place.
Several members have found dramatic improvement by trying liquid levothyroxine
Do you have Hashimoto’s?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
And especially when very hypothyroid as you currently are
Ask GP to test vitamin levels
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
If/when also on T3, make sure to take last third or quarter of daily dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
List of private testing options
thyroiduk.org/getting-a-dia...
Medichecks Thyroid plus antibodies and vitamins
medichecks.com/products/adv...
Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test
Thriva also offer just vitamin testing
Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test
bluehorizonbloodtests.co.uk...
If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3
£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code
thyroiduk.org/getting-a-dia...
Also vitamin D available as separate test via MMH
Or alternative Vitamin D NHS postal kit
Yes I have hashis, my thyroid is very small and dark, I've been diagnosed 16 years. I already follow that blood test protocol. Vit d is already supplemented as is b12 I also take vit k2 mk7 4 hours after levo. I've worked hard on being informed to try and get myself better. Vit d level about 4 months ago was 47.
Is this vitamin D 47nmol or 47ng/ml
What are actual results for
B12, folate and ferritin
It was below range, I can't remember off hand I'll have a look, ferritin was good well up. B12 was the low part of the range hence me starting supplements. The pain that I'm experiencing is ever so strange it stops when I stop the levo for a few days or so. It feels like inflammation my joints feel hot and swollen.
Not what you're looking for?
You may also like...
Sudden intolerance to levo?
Intolerance to levo?
Intolerances?
Levothyroxine intolerant?
Allergic or intolerant
symptoms of levothyroxine intolerance?
TEVA Levo New formulation 
Leaky Gut / Food Intolerances
levo is not for everyone
