Hi I was diagnosed with underactive thyroid in Jan this year. GP said it was 36. It has come down to 30. I was on 50mg of levothyroxine but had a awful time on them. They reduced to 12.5mg and slowly increased to 37mg. I have now been taking 50mg for three days and again now feel terrible, I'm emotional crying full of panic angry etc. I have anxiety symptoms, something I do not usually have. I was driving my car and suddenly everything went white and I was dizzy so I had to pull over. This only lasted for 10 seconds but really scared me. GP said I can't drive for two weeks. Checked my BP which was 113 over 68. Normal for me.Does anyone else have similar issues with levothyroxine. Anything over 37.5 mg and I really suffer. Is there an alternative to levothyroxine?
Struggling with levothyroxine : Hi I was... - Thyroid UK
Struggling with levothyroxine
That sounds rather odd and unusual.
Are you taking any other medicines?
How long between taking your levothyroxine and this white event?
Has the make of levothyroxine changed through these dose changes? If it has, have you felt there was any difference between them?
In the UK, there is also liothyronine (T3 or L-T3) which is much more expensive, requires different dosing and may be refused by your doctor. Effectively GPs are not allowed to start prescribing liothyronine you you will need a referral to an endocrinologist.
(In other countries, desiccated animal thyroid might be an option but it is incredibly rarely made available in the UK.)
Your account gives the impression that you might be on too little rather than anything else. Very few who have had a TSH as high as 36 would ever manage on a dose as low as 50.
Do you have any test results you could post? (Include the reference intervals/ranges as they vary by lab.)
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. PLUS how to write prescriptions in Appendix F.
dropbox.com/s/bo2jzxucgp9hl...
helvella - World Desiccated Thyroid
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).
dropbox.com/scl/fi/gx6dmz5i...
helvella - Thyroid Hormone Medicines - RotW
Contains details of all levothyroxine, liothyronine and combination products - excluding desiccated thyroid products. Details available vary by country and manufacturer.
dropbox.com/s/dliou4fszbegw...
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.
helvella.blogspot.com/p/hel...
HiThe white episode came about 40 mins after I took the levothyroxine. I don't have any lab results as my GP does not give them to me. I can see if I can get them.
The levothyroxine is the same make I just have different strengths.
I did think my results were high as online it's say it should be around 4 and mine is 30.
If 50 is a low dose could not having enough medication cause my issues?
The result you appear to be talking about is TSH.
TSH rises as you become hypothyroid. Typically, we expect a level of around 1 when we feel well.
But the results that matter more are the Free T4 and, if possible, Free T3.
You are entitled to your results. I simply ask at my surgery's reception and they print the latest ones out for me. But many have access via an app (England only).
The only 12.5 microgram tablets currently available a from Teva. (Another company has launched some but not yet in stock and available.)
Some people do not do well on Teva levothyroxine for some reason. It might be worth asking if you could have another prescription and get another make - whether 25 or 50 microgram tablets. It is an inexpensive medicine so shouldn't be much of an issue.
My current dose is 125 and many require more.
I just looked properly and the 12 are teva and the 50 are accord. I was OK on the 12. 5. The issues started on the accord 50. So maybe it's them. I will. Ask for another make and see if that helps
The are many, many posts discussing issues with the various makes.
Some are fine with any, some need to avoid one make, some need to avoid one ingredients, and some can only tolerate one make. Very difficult to identify why with any certainty.
Is there any possibility you are sensitive to the lactose? Some cannot tolerate it in levothyroxine even though they are fine with it in foods.
Hi yes I am sensitive to lactose and avoid it as much as I can
Accord contains lactose.
As does every other currently available make except Teva and (Aristo) Vencamil but the latter is currently only in 100 microgram tablets.
Beth, also reiterating how important it is for you to get copies of your actual blood test results.
You are legally entitled to them - I’m not in the UK but I see people here talk about an app you can access or how receptionists can print them out for you.
I’d recommend prioritizing this as you will find there’s no way to manage this disease unless you know your actual numbers.
I have a GP appointment tomorrow and I will ask for them then. Thanks
Ask at reception rather than your GP.
Reception should be able to set you up for accessing your test results and other useful info. The App is called 'Airmid UK' - at least that's what it says on my screen.
Feel for you, I am nearly 2 years in and it is horrible at the start and so so slow and you feel pants on a good day ...
GPs have very little knowledge on thyroid, in my experience and everything I have read. My Mum is 25 years into it.
Sound like lactose may be a possible root cause of your issue.
Also I understand some people just struggle to take levo/T4. It could just be a getting used to it thing as well.
You are 6 months in - I would be writing to your doctor if they think it is worth seeing an Endocrinologist quickly to get something sorted. I would write some of this stuff down and hand them a letter with it on ? Ask if there is a risk to your health
Write down your symptoms to the doctor too.
If at doctors ask if you are autoimmune type. Worth knowing, I had to ask to get checked, it should be routine!
Ask for T4 levels they have measured- if not get them urgently. This shows how much is in your blood mine was below scale at first. Hopefully yours isn't. TSH is not a direct measurement.
If they have not already - Get some blood tests for vit D B12 and folate and ferritin.
They are important things for us to have correct - they take a while to get sorted
Celiac blood test worth while too. Even if this is clear you could still be gluten intolerant.
Good luck tomorrow. Many are fine with underactive thyroid, the posts on here tend to be the ones who are struggling, as there are 10 % or so who have issues, like converting T4 to T3 which is active form. Do not get scared, I was. The amazing more experienced wise ones on here will help you if you have struggles.
My cholesterol was high - do not let them put you on statins, it will just be thyroid. Read GreyGoose posts.
My creatine (kidney function) was high went with thyroid tablets
I was pre diabetic - this went as well.
My cholesterol is OK. So I have one thing going for me!! 😂😂. Thanks for all your advice
As a general rule, you should not be driving with a TSH over 20 because all your responses and reflexes are affected by lack of thyroid hormone. I know it's sometimes unavoidable but don't drive unless it is absolutely necessary. For your safety and for others.
I've never been told not to drive by the GP so did not know we couldn't. I will ask at the appointment tomorrow as driving is a huge part of my job. Thanks for your response
Hi Beth
I very much doubt if the episode you experienced was related to Levothyroxine.
I had something similar, just the once, one morning two or three years ago.
Dizziness, tense shoulders, woozy, feeling really hot and my vision was like someone had turned up the brightness on the world.
I put it down to a combination of low blood sugar/pressure, overheating and dehydration. I'd been out in the sun, on my feet walking round for a couple of hours and hadn't had any breakfast.
As soon as I sat down in the cool and had some water and something to eat I was fine and carried on with my day.
Hopefully, it's a one off for you - as I haven't experienced anything remotely like it since.
Not heard about tsh and driving.I think people have all different kinds of issues as each of the bodies systems needs it.
My tsh was 79 and it took 2 months to come under 20 when I think my T4 raised to register fot first time. Another 2 months and it got to 4.I had to drive loads, but everyone is different.
If autoimmune it takes years to drop off your thyroid hormone production it seems.
I had some short white outs before I was diagnosed with Hypothyroidism. They stopped when my dose was established .
Seventeen years later I still worry about it happening again- especially if the GP starts trying to mess with my dose.
May not be the same for you though- it needs to be checked out
Hope you start to feel better.
How did you get on at the GP?
They said my levels have dropped from. 30 to 12. So it's coming down I have been told to stay on 37.5mg of levothyroxine as anything higher and I get unwell. They want me to wear a heart monitor for 7 days due to the short blackout I had but I think this was stress related. I have terrible anxiety at the moment. Something I have not had since I was a teenager. This came on about two weeks ago so it fits with the blackout. Apart from the awful anxiety I do feel better. Thanks
Feel for you, I was a blubbering wreck until it thyroid hormone tablets started sorting me out.
Heart monitor sounds good - if your heart is shown to be sound then a lot less worry about too much levo and one less thing to worry about.(if you can tolerate it)
Good your TSH is dropping. Your system is sensing some thyroid hormone which is why it is dropping.
Did they measure your T4 levels ?With struggle to get tolerate more than 37.5 it might help them assess how urgent they need to deal with it.
As your body gets used to T4 again then maybe you can take some more, I take some T3 and had to split the dose. I can now take in one go.
Have you tried some in morning and some later in the day ?(away from food, coffee etc.)
Doctor needs to get more thyroid hormone into you, if they are struggling then should they not refer you a specialist. I am sure once you get on correct dose everything will be ok. So many things go wrong when levels are low.
Do not want to overload you but next stage of getting your thyroid conditions sorted will be checking
vit D,
B12,
Folate
Ferritin
Also are you autoimmune type - they need to test for antibodies
as they need to be run at good high levels according to the knowledgeable peeps on the forum. Have they done other blood tests ? Have you got access to them on NHS App. It can take a while to sort this out but you need access to all your results - so you can get things sense checked. Get doctor lined up for these tests.
I have an app now which has loads of stuff they have tested like cholesterol and kidneys. Everything came back fine. I will ask the GP when I see them next about testing for the things you have mentioned. I think the fainting and heart issues was stress as I am very stressed. Seeing GP about stress levels too. Hopefully it will all calm down soon. Thanks again
Blood results following increase in Levothyroxine dose
Nausea with Levothyroxine 
Link between levothyroxine and anxiety 
Heart Attack and Levothyroxine
