Maybe hypothyroid?

[KatieD]

Hi all, am new here but have been reading and learning!

I am not in the UK (I hope it's still ok to post) - I am English but living in Europe. I have health insurance but am not getting anywhere with doctors! I am feeling awful - completely exhausted and very shaky in a muscle-weakness kind of way (legs and arms shake when I do stuff, mostly OK when sitting) and can't concentrate. Also feel like I have a lump in my throat (though Dr has examined me and couldn't feel anything, but it was uncomfortable when she pressed there).

Had routine blood tests in Jan and my THS was 4 (no other thyroid tests done). My haemoglobin was low and ferritin borderline - had iron tablets and then a transfusion.

Four different doctors have now told me that a THS of 4 is perfectly fine, but I know from reading here and on other reputable sites that that is not necessarily so. At my last appointment I had bloods done but they weren't fasting tests. My results were THS 1.94 (0.35-3.74), Free T4 12.2 (9.8-18.8) and free T3 4.3 (3.4-6.1). It seems to me that although THS is better, T3 and T4 are a bit low? And am concerned that it wasn't a fasting test so maybe not accurate. I also had tests for antibodies which were negative.

Other tests showed that my ferritin was up to 132 (yay) but haemoglobin only borderline at 12.9. My magnesium was also borderline at 0.7 (0.7-1) and have been given supplements. I'm just mentioning this as I know mineral deficiencies are common with hypothyroid. Have previously had B12 test and was fine (very high as I had been supplementing!).

Have seen neurologist and he has ruled out neuro stuff regarding the shaking. Am on lots of meds that can cause fatigue BUT have been on them for years and mostly now at a low (and stable) dose, and have only been having symptoms since December last year.

I have an endocrinologist appt on Thursday, but not sure it's even worth going - am worried that if I show him the latest test results he will say everything is fine and I am back to square one. Thinking about not showing him test results and then he can just get them done again? (There is no central system here and my insurance should pay).

Can anyone help me make sense of my results? Should I go to appointment or just give up?

Thanks so much for reading,

[Clutter]

Welcome to the forum, KatieD. TUK is a UK registered charity but members worldwide are very welcome.

TSH 4 is not at all fine for most people. It may be within the range that determines whether diagnosis is made and treatment given but it's not fine.

Katie your last results will be accurate. TSH and FT3 fluctuate throughout the day and night. Fasting and testing early in the morning is useful for people who's results are borderline as it may tip them over the point at which a diagnosis is made or they can show slightly higher TSH to enable a dose increase.

The latest results you posted above are comfortably within range which will probably preclude a hypothyroid diagnosis.

[KatieD in reply to Clutter]

Hi clutter thanks for replying!

Do you (or does anyone) think that the improvement in my ferritin levels is why my THS has come down in the latest results? It is a big drop.

[Clutter in reply to KatieD]

Katie, I'm really not sure but it possible. It's often asserted that good levels of ferritin are required to absorb Levothyroxine.

[HarryE]

My TSH only got up to 4 & I was really ill, off work for months. No one would treat me so I was forced to do it myself. Thankfully now back to normal.

TSH tells you nothing about how you feel.

[greygoose]

Katie, go to the appointment, Don't tell him your previous results - or just say your TSH is always 4 - and get more tests. Next time make sure you have them done before 9 o'clock, and before breakfast. That's when your TSH will be highest. Ask him to also do antibodes : TPOab and Tgab. Plus the usual TSH, FT4 and FT3.

If you have antibodies that might explain why your TSH has suddenly come down.

[KatieD]

Thanks everyone.

Harry, sorry to hear you had to treat yourself - it is awful that doctors won't treat people even when they have symptoms. Glad it is working for you.

Greygoose, thanks for the advice, and for the encouragement to go to the appointment. I have been so fed up with the whole thing and ready to give up. I had antibodies done but will ask for a repeat - TPO <28 (<60), Antithyroglobulin 18 (<60) and anti-TSH receptor <1 (<1.75). Do they sound OK?

[Binkie]

i am fairly new to all this but i can say that for me a TSH that ranged between 3-4.9 over the years had a diabolical effect on my health, my T4 & T3 were at the very bottom of range, my dr was happy with that and i was dismissed as being absolutely fine.

In the end i was virtually housebound with pain, fatigue, i was no longer able to do my beautiful garden, walk my dog in fact life had become joyless.

My dr now agrees that anything over TSH of 1 is not good for me.

There is huge resistance in the medical community to do clinical evidence based diagnosis, the reliance on a TSH test which for many of us is futile (my thyroid was removed years ago and yet apparently it worked just fine!)