Advice re under active thyroid please

[Jean487]

Hi

Newbie on here but have had under active thyroid for years. I am puzzled and am asking for advice in simple terms please. I've always had difficulty getting my head around tsh levels, no matter what I read.

I've been on 100mcg for a good few years. This last year I've been feeling more and more tired, cold and of course the weight gain - need you ask - and no my appetite isn't brilliant so I'm not eating more. I walk but can't walk as far as I used to as I just get exhausted but not in a pleasurable way.

Short version I asked if the doc would do my yearly review early - no he says - last result was normal - how many times have we heard that.

So I waited till October and have had bloods done and my tsh is 1.06.

First question is that good or bad?

It has been coming down over the last few years whilst on the 100mcg - it was 3 something, then 2 something now it's 1.06. The lady doctor - locum- I saw - who was lovely, gave me a prescription for an added 25mcg for a month, when I had the tests done and said because of what I said, she'd be happy for me to start them after the blood test so I did. She said sometimes we need to listen to what the patient is telling us and not the test results!

So question 2 is will taking more levo make me feel better and which way will it move my Tsh. Will it go up again nearer to the max 5. In other words is 1 not good and 4 but below 5 is better?

Thanks for reading and I look forward to your advice.

[SlowDragon Administrator]

No lower TSH is better. The more Levo we take the lower the TSH.

To know what's really going on, you need more than just TSH. Also need to know FT4 and FT3, plus do you have raised Thyroid antibodies

Low vitamin levels can also affcet and be affected by thyroid. Ask GP to test vitamin D, folate, ferritin and B12

Always get actual results and ranges

It's is common for GP to only look at TSH, which may be quite low (as yours is) but FT4 and FT3 could also be low, when actually we need them to be higher.

Increasing the Levo dose may improve these.

If you can't get full thyroid and vitamin testing from GP

thyroiduk.org.uk/tuk/testin...

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 money off offers. DIY finger prick test or option to pay extra for private blood draw or

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

[Jean487 in reply to SlowDragon]

Thanks SD. I'd read other threads about these private companies.

I've asked to have access to my patient records but as others have found, the surgery is being very slow about doing it, even though I've filled in the relevant forms.

The results I've had in recent past years have only showed my tsh levels.

Last free one I've seen was in 2014 when at that time my tsh was 7.67 and free t4 was 11pmol?? And it said query clinical evidence of under replacement, so I'm guessing that would be when they increased me to 100mcg. Next test two months later they only did t4 and it had dropped to 1.53.

I haven't copies of the next two years tests, I was just told a number so I'm guessing they only did t4.

Does my free level back in 2014 give any clue? I don't follow what free levels really mean, other than we need them!

[SlowDragon Administrator in reply to Jean487]

No results in 2014 only showed you were under medicated

Personally I would get private tests done

Essential to know if you have high thyroid antibodies. If you do this is autoimmune thyroid disease also called Hashimoto's and low vitamins very likely. Also may need to consider gluten free diet

FT3 and FT4 and TT4 tested at same time as TSH will show if you are taking enough Levo, or not and if you have conversion issue or not

NHS virtually never test FT3

Low vitamins can slow uptake and conversion

The £99 test (often on offer at )£79 will test all these, plus £25 if you want blood draw instead of DIY finger prick, unles you know someone who can do blood draw for you

[junecox92]

I had constant trouble with regulating my thyroid. Nothing seemed to work and all tests showed I was "normal" with the meds they were giving me! 6 years fast forward, and I finally found a doctor that fixed it! Turns out the tests came back within range but the problem was in the conversion of T4 and T3. They added in Liothyronine to regulate and 1 year later, I am living a normal life!

[Jean487]

Thanks for that hope!