I need some collective wisdom of the thyroid hive mind if poss!! I had a partial thyroidectomy a year ago and my energy levels are dreadful along with other symptoms such a weight gain and low mood and anxiety. Before I had the operation my TSH levels were consistently between 0.49-0.7. Now though they are steadily rising and are 2.29 - still well within the ‘normal’ range but seem to be very different from my Pre-op levels! Is there such a thing as ‘normal’ for different people? Is there any chance a doctor would treat me with that level? My free t4 is 13.9 and free t3 is 4.3 so again both well within the recommended level. I feel very puzzled as I know I just don’t feel right!
Thanks in advance!
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Catpop17
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Are you on thyroid medication? And you should if you can post your test results with ranges. I had full thyroidectomy 3 yrs ago and my numbers have been nutty ever since and keep getting nuttier.
I’m not on any medication at the moment and they don’t seem to want to medicate. I know what you mean about feeling nutty!! I had my partial thyroidectomy in October last year.
Pre-op TSH results were 0.49-0.7 now they are 2.29. Normal range is 0.27-4.20 so I’m still well within but it’s much higher then before my op if that makes sense!!!
Yes, it was partial. A colleague had the same op recently and they medicated straight away. My levels are going up and up but not enough for them to medicate apparently although I feel dreadful!
Your doctor should be giving you more consideration considering you are operating on half a thyroid and not follow those lab reference ranges so closely but I'm thyroidless and my Endo follows those same lab references....makes absolutely no sense that a partial and full thyroidectomy person would be lumped into the "normal" lab category, What is actually normal about having half or no thyroid....bunch of morons.
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
Ask GP to test vitamin levels and thyroid antibodies.....
You will most likely need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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 . .
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Each person is individual in the requirement for thyroid hormones if those were your levels pre op you should actually have an even lower TSH to allow for extra t3 your thyroid no longer makes. Definately tell your doctor you need levels below those abs most certainly not above - small wonder you feel dire.
" Is there such a thing as ‘normal’ for different people?"
Apparently we each have an individual "Set point" (think of a thermostat setting for central heating for example). Around that personal setting there is quite a narrow range where we feel well. Outside that range we don't feel too well.
Our personal range is much narrower than the official reference ranges and may be at any place within or even slightly outside them.
As it is rare for our thyroid levels to be tested when we are well the doctor should go by symptoms as well as blood tests, but they are usually not taught that.
I found an amazing doctor in our local practice who is actually willing to listen and learn when he realised I did have some idea what I was talking about. He said they didn't teach much about the thyroid in medical school! I sent him some literature at his request and he seemed impressed by the fact I had done some research and not just given him a newspaper article! One in a million!
One tip, if your local practice has several doctors, is to ask the receptionist who might be the best one to see who would be willing to listen and investigate why you are still feeling so unwell. Receptionists don't have the medical knowledge but they do know the doctors!
"Is there any chance a doctor would treat me with that level?"
Depends on the doctor! The fact that your TSH is rising is a sure sign you are under medicated, and getting more so. Most of us seem to feel best if TSH is below 1. And, as TSH110 said, your TSH probably needs to be lower than before - even below range perhaps (Post again for further advice if they want to reduce your Levo because TSH is too low. Many of us have been there too).
Something I've found helpful is to make a bullet list of your main symptoms and how they affect your quality of life to give to the doctor.
"My free t4 is 13.9 and free t3 is 4.3"
As has been said, we need the reference ranges. "Within range" is almost meaningless. The important thing is where within range and if that is what suits you. Again, most of us seem to need to be quite high in range (especially T3)
Thanks so much! I’m not on any medication at the moment and my doctor seems unwilling to treat as my TSH levels are well within range which is 0.27-4.20. My Pre-op TSH results were 0.49-0.7 now they are 2.29. My Free T4 is 13.9 with a range of 9-26 and my Free T3 is 4.3 with a range of 2.8-7.1. Results are all in the middle of the range so I do t think they will give me any medication. Any advice gratefully received!!!
Thank you! That’s a great idea to ask for a trial. I’m seeing a different doctor on Wednesday so I’ll ask her then. I’ve felt pretty rubbish for a year now since my op and they keep saying it’s perimenopause (I’m 42) but they seem very disinterested in my thyroid as my bloods are all ‘normal’! A trial would be great. People are always surprised that I’m not on any medication since my op and a colleague had the same a few weeks ago and had been put straight on Levothyroxine to counter any possible effects.
I feel ridiculous as I keep going back and I’m sure they think I’m a hypochondriac!! Thanks so much again! X
I had a partial thyroidectomy 14 years ago & I'm still not being medicated. My TSH is now almost 5 & my free T4 is only 11. I'm sorry you feel so awful, it is so frustrating as we cannot explain that we are no longer feeling "normal" no matter how often we are told we are. I really hope you get some help, it depends on where you live as to how & when you are treated. My Ferritin levels once dropped down to about 5 & my doctor actually laughed at me & said it was a wonder I could walk! I didn't think it was the least bit funny! I've asked many times for repeat tests, but they won't do them in the lab. although my GP asks for them to be done.
This site really helps me, as I've found out far more info. from here than I've ever been told from GPs, their eyes glaze over at the mention of thyroid issues!
You're not alone, there are quite a few of us out there with only half a thyroid - stay strong x
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