My first time posting. I am not sure if a message this long is allowed so I do apologise.
I was seeing London consultant as have Hashimotos. Was moved from Levothyroxine 75 every day in November 2023 to Novothyral 75 every day instead as apparently my T4 wasn't converting to T3 very well. Took a while to get used to.
February 2024 - TSH 0.03, Free T4 16.1 - consultant dropped my Novothyral 75 to EVERY OTHER DAY. Stayed like this for 3 months.
May 2nd 2024 - TSH 8.5, T4 8.4 bloods taken by GP and then next taken by GP on
May 16th - TSH 15.4 - I emailed consultant she said very worried and put me back on Novothryal 75 every day again.
June 5th - Finally had face to face with consultant she refered back to TSH 15.4 and said increase medication further to Eurothyral 100 every other day moving to every day in a month. I did question as was getting slight heart palpitations but told to carry on (I did ask to wait until we saw my blood results that were due to be taken on 11th June). But was instructed to carry on and I took 1 x Eurothyral 100 and 5 hrs. later felt absolutely awful, severe anxiety, heart palpitations, night sweats. Following day took Novothyral 75, as instructed, 2 hrs later felt worse, head and heart symptoms spiralling, shaking.
The following 2 days I took no medication as Hyper symptoms unbearable.
Had bloods run 11th June: TSH 0.16, Free T4 15.8, Free T3.9
Took Novothyral 75 again next 2 days and then ended up in hospital with breathlessness, light headed, Heart Palpitations told Atrial Fibrillation, High blood pressure. Discharged by hospital with probable Chemical imbalance and see Dr.
Hospital bloods on 13th June TSH 0.4
I contacted consultant and gave all blood results above, she would not speak to me just emailed 'keep going as I've prescribed'. I have been too scared to take Eurothryal 100 again so have kept to Novothyral 75 every day but my anxiety, heart palpitations (feel Hyper) is difficult.
I'm waiting to see GP next week but she doesn't understand T3 element and now I'm searching for a new consultant - any recommendations very much appreciated. Also, any thoughts on above would be greatly appreciated.
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KB3101
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Welcome to the group. If you could complete your profile it helps members understand your thyroid journey so far and be able to advise you better. Click on your image icon to start. Fill out the free text box at the top.
I'm assuming you're somewhere in Europe if you're being offered these medicines. Can you say how much T4 & T3 are in each product? I'm stuggling to find the information.
If your TSH was 15 only a month ago its going to take a few months yet to begin to feel more like yourself regardless of what dose of which product you're taking.
So you have latest blood results on a steady dose of 75mcgs Novothyral for 6-8 weeks?
Are you also supplementing and monitoring key vitamins ferritin, folate, B12 & D3? What are your latest results for these?
What supplements do you take?
Hypo people get low stomach acid which reduces absorption of vitamins from food. We need OPTIMAL levels of vitamins for our thyroid hormone to work well.
hi thank you, hopefully I have filled in profile correctly? I was put back on Novothyral (combined pill 75 Levothyroxine and 15 Liothyronine) on 17th May every day.
previous to that was on Novothyral 75 every Other day from 7th Feb to 16th May.
Before that started on Novothyral 75 November 2023 slowly up to every day
Thank you. Your profile seems to say you're in the UK which I suspect you aren't.
The combined tablet Novothyral is a great idea in theory, but switching directly to it from just Levo will have increased your FT3 suddenly by quite a bit which many people react badly to.
Its usually recommended to firstly ensure that key vitamins are at OPTIMAL levels - ferritin, folate, B12 & D3 before starting to add T3. Low levels of vitamins can cause intolerance of T3.
Only add 5mcgs T3 at a time. Wait. few weeks and if all is well then proceed to add a further 5mcg T3 as a late afternoon dose.
What areyour vitamin levels?
Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...
There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...
Only do private tests on a Monday or Tuesday to avoid postal delays.
Also a point to note is its not a good idea to alternate doses with anything containing T3 as T3 is an active hormone so one day your body will get more and the next less and body doesnt know if its coming or going!
It looks like your consultant panicked when they say your low TSH. The thing is that T3 often lowers TSH by alot and often suppresses it. The most important thing to do then is just look at the free hormone results FT4 & FT3. So long as they are within range then you are not over replaced.
I'm surprised that a doctor in London prescribed these medicines as they aren't common in the UK.
I'd suggest sticking to your current dose for 6-8 weeks, retest TSH, FT4 & FT3, start a new post with these results plus vitamin results.
You can email info@thyroiduk.org for a list of T3 friendly Endo's.
Don't worry about the length of your post, it's best to have all the details if we're going to help you.
I didn't know you could get Novothyral 75, I thought it was only 100. So, I'm assuming that's 75 mcg T4 and 15 mcg T3, right? Well, this endo doesn't know an awful lot about treating thyroid, does she! That is far too high a dose of T3 to start on. Normally we recommend starting on 5 mcg for at least two weeks. So not surprising it took you a while to get used to it.
February 2024 - TSH 0.03, Free T4 16.1 - consultant dropped my Novothyral 75 to EVERY OTHER DAY. Stayed like this for 3 months.
Well, you just can't do that with T3. It has to be the same dose every single day. So, mistake n° 2 on her part. And she didn't even test your T3 before dropping it! Which is essential when taking T3. I suppose she was just looking at the TSH, but if she's prescribing T3 she should know that that's what T3 does: it suppresses TSH. And, cherry on the cake, she left you on that dose for far too long, she should have retested after six weeks.
May 16th - TSH 15.4 - I emailed consultant she said very worried and put me back on Novothryal 75 every day again.
100 would have been more appropriate.
(I did ask to wait until we saw my blood results that were due to be taken on 11th June). But was instructed to carry on
Another serious mistake. However, palps can be hypo symptoms as well as hyper.
took 1 x Eurothyral 100 and 5 hrs. later felt absolutely awful, severe anxiety, heart palpitations, night sweats. Following day took Novothyral 75, as instructed, 2 hrs later felt worse
Too much chopping and changing of dose - never a good idea.
Had bloods run 11th June: TSH 0.16, Free T4 15.8, Free T3.9
Well, once you are taking T3, the TSH is irrelevant unless it is high. And, for the Frees, we need the ranges to make sense of them because ranges vary from lab to lab.
That said, your FT3 does look very high. BUT how long was the gap between your last dose of novothyral and the blood draw? It is was less that 8 hours then you have a false high result.
she would not speak to me just emailed 'keep going as I've prescribed'. I have been too scared to take Eurothryal 100 again so have kept to Novothyral 75 every day but my anxiety, heart palpitations (feel Hyper) is difficult.
How very unprofessional! Could be a sign that she's feeling unsure of her decisions.
I don't blame you for being too scared to take the prescribed dose. Which is still quite a lot of T3 - 15 mcg - and we don't actually know how well you convert - we only have her word for you being a poor converter, and she doesn't sound very trustworthy. So, if it were me, I think I would go down to 50 novothyral - can you do that? Cut a 100 tablet in half? It won't be terribly accurate but might help and be a good short-term solution until you find an endo that knows what s/he's doing.
My pharmacist had managed to get Liothyronine 5mg doses for me and has prescribed 75 Levothyroxine too. I’ve gone to him as nearly run out of Novothyral 75…. Which looks like a good thing. So it’s him and me at mo and you guys, trying to work out what I should be taking. I took half a Novothyral 75 yesterday because I could feel my anxiety getting out of control again the day before. I’m not quite sure how to list my lab results so can you bear with me and I’ll try type them in. Another symptom which comes and goes lately is pins and needles in my hands??
Well, good for your pharmacist! That's a very good solution. So, what are you planning on taking? 75 mcg levo sounds good, but I wouldn't drop down to 5 mcg T3 straight away. Go down to 10 and see how you feel on that after a couple of weeks. The problem with these combined pills is that they are so inflexible. I was on Euthyral for a while but found there was too much T4 and not enough T3 for my needs, and couldn't get anyone to prescribe extra T3 for me.
Anxiety can be a hypo or a hyper symptom, so beware of going by symptoms alone.
The best way to type in lab test results is the following:
Date/Dose
Name of test: result (range)
For example:
24/10/2014 - taking 75 mcg levo
TSH 6.4 (0.35-4.6)
FT4 13.1 (12-22)
FT3 3.9 (3.1-6.8)
Ficticious numbers, of course.
Have you ever had your TPO or Tg antibodies tested? Cortisol? Nutrients: vit D, vit B12, folate, ferritin? If so, add them in.
Another symptom which comes and goes lately is pins and needles in my hands??
That sounds like low B12. Low nutrients can cause horrendous symptoms, and most hypos have low nutrient levels. So very important to get those tested.
Thank you again. I have just put all the notes and history I have in my profile. I will be starting Levothyroxine 75 and Lioth. 10mg as of tomorrow. You have all been so kind and incredibly helpful I can not thank you enough x
helvella's medicines documents (UK and Rest of the World) can be found here:
helvella - Thyroid Hormone Medicines
helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world. There is now a specific world desiccated thyroid document.
I highly recommend viewing on a computer screen, or a decent sized tablet, rather than a phone. Even I find it less than satisfactory trying to view them on my phone.
helvella - Thyroid Hormone Medicines - UK
The UK document contains up-to-date versions of the Summary Matrixes for levothyroxine tablets, oral solutions and also liothyronine available in the UK. Includes descriptions of tablet markings which allow identification. Latest updates include all declared ingredients for all UK products and links to Patient Information Leaflets, etc.
Contains details of all known desiccated thyroid products including information about several products not considered to be Natural Desiccated Thyroid (NDT/Desiccated Thyroid Extract/DTE).
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
The link below takes you to a blog page which has direct links to the documents from Dropbox and QR codes to make it easy to access from phones. You will have to scroll down or up to find the link to the document you want.
Alternate day dosing - between 100 and 125 of just levothyroxine is something I won't do because I never feel right on it. I'd much rather be on 112.5 every day.
Alternate day dosing on a combination L-T4/L-T3 product, between none and a full 75 or 100 tablet, is something I wouldn't even contemplate.
Thank you so much. I really felt it was wrong and tried saying. I really feel if I took Eurothyral 100 I would be in hospital very ill. Given I had gone to 0.03 TSH first time and within 3-4 weeks had already gone from 15.4 to TSH 0.16 (tested after not having meds for 2 days). I don’t understand all this and am trying to educate myself. I can’t thank you enough for reassuring me that I’ve done the right thing in not taking Eurothyral 100. Since approaching ThyroidUK for help I feel less alone xx
We sometimes have to make relatively big changes but, in general, we should try to make small changes, slowly.
You absolutely must take into account how you are feeling. A consultant goes home and forgets all about you. At best, they remember you next time you are in contact. That is just ordinary "how things are" - not criticism.
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