Thyroid levels?

[sundaymorningworries]

Last December I had a lump appear on my neck - turned out it was a thyroid cyst that had bled. They removed half my thyroid as it looked worrying, however the biopsy thankfully showed it was benign.

So now I only have half a thyroid and have been having my thyroid levels measured to ensure it is compensating. First test in April came back okay (can't remember exact levels). June test - TSH 6.25, T4 12. August test TSH 4.5, T4 10.7. I have now been told this is fine and I don't need testing again.

However I feel AWFUL! Worse and worse in the last 6-8 weeks - fatigued, can't remember things, can't concentrate, sleep problems, exhausted, constipated, muscle weakness, breathlessness, dizziness. The GP diagnosed me with depression but I feel sure my low mood is a result of all the other symptoms, not the other way around.

So does anyone have any experience of hypothyroidism symptoms at these levels, or is it just "life"? What else can I do? Would you push for thyroxine?

(I have had virtually every other blood test going - everything else is fine)

That is not fine at all. Once you’re diagnosed with hypothyroidism your FT4 should be in the upper half of the range and your TSH should be below 1. Have you read the Thyroid U.K. website?

Your TSH should be around 1 to feel well ... mine is 0.70 at the moment and I am slightly underactive which is making me feel wired. Unfortunately your Doctor will tell it is normal because it falls within the NHS levels. TSH is a pituitary gland hormone and is not a good indicator of thyroid health but Doctors don't have a clue about this. Join Healthunlocked Thyroid group and ask for some advice because the NHS hasn't got a clue how to treat people with thyroid disease. I have been trying to get help for mine for 15 years and now take advice from others in the same situation as me.

Thanks both - I will look that up. I had a suspicion that GPs might be woefully under experienced with thyroid stuff - it seems quite complex and with all the things they deal with how can they possibly know it all?

Never diagnosed with hypothyroidism but something is most definitely not right.

The British Thyroid Foundation gives normal level range as:
TSH 0.4 - 4.0
T4 9.0 - 25.0

Is this not correct, or subject to interpretation, then?

Well firstly it depends on the lab but I’ve never had a test where a TSH below 10 is normal range.

In my personal opinion, the BTF are utterly ridiculous and contributing to a system that keeps people (mostly women) sick far longer than necessary.

I'm confused - when my TSH was 6.25 they said that was too high, so my brain was trying to tell my body to produce more T4. Is that incorrect?

6.25 is definitely too high but really so is 4.0 - the problem with TSH is that its only a good indicator if everything is working normally. You can have normal TSH and still be hypothyroid if your body isn’t responding to low T4 normally (or if you’re not converting properly or a host of other reasons)

In many other countries you’re treated once your TSH passes 2.5, in the U.K. the official guidelines are that you’re not clinically hypothyroid until your TSH is over 10.0

Sorry, I meant I’ve never seen a lab range FT4 below 10 is normal range.

TSH normal ranges tend to be between 4 and 5.5 but that’s really too high and most people will be symptomatic by then

Okay so this is all backing up my suspicions that my symptoms ARE due to my thyroid, despite being told that they wouldn't expect to see symptoms at my levels. I will try to do more research and then attempt to persuade my GP that I should try treatment.

sundaymorningworries a normal functioning thyroid should be around about1.00. In europe if your TSH is over 3.50 you are classed as hypothyroid and given thyroxine here in the UK they will wait until your TSH is over 5.00 or even 10.00 and you will feel very sick then. I have had a TSH of 7.00 and I was bed ridden. I have suspected Graves Disease or Hashimoto's the Doctors haven't got a clue.

sundaymorningworries if your TSH is 6.25 you are underactive and need thyroxine which is hypothyroid.

TSH has come down a bit now but T4 is worrying me a bit. Have had a look at HealthUnlocked and there seems to be a similar consensus to what is being said here.

Your tsh is outside current updated recommendations and would suggest hypothyroidism.

Please push your gp for a referal to an endocrinology consultant who will be much better equipped to assess your results and treat you accordingly.

Do not be fobbed off with any old blah nonsence, I was for years and it ended up with me being really ill. My GP was sort of oopsy should have realised earlier....

I have received my test results. Can anyone shed any light on my TSH, FT4 levels and if my ferritin, vit B12 and vit D look okay?

Keep an eye on your B12 level, that's a bit low in range. It would be good to have that redone in 6 months & another 12 months. Ferritin looks ok at 48. You could take some Vit D supplements to keep your levels satisfactory.

Your T4 is too low I would be on the floor at that level.

Your Vitamin D should be at least a 100. (I use the spray)

Your ferritin it too low as well (try eating liver or pate once a week)

Doctors will tell you everything is ok but they are wrong.

Are taking Levothyroxine? If so how much?

No I'm not taking anything at the moment, other than standard multivitamins. I guess I need to look into some supplements then. Thanks both.

I have asked advice for you from my thyroid site healthunlocked ... you should join they have really helped me.

I did join mileysmiley They are super helpful. Thank you!

@sundaymorningworries

That's good .... greygoose is very knowledgeable ... you should read my story on my profile page.

There is a really helpful forum at www.tpauk.com. This is a site specifically about thyroid issues, with lots of information but also a forum to ask questions.