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.
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