Advice on levels required: Hi, I have an... - Thyroid UK

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Advice on levels required

Asnm78 profile image
5 Replies

Hi,

I have an underactive thyroid, I've been taking 125mg for the last few years but over the last 12 months I have been feeling increasingly tired, brain fog & depressed. I got a done in April which showed I was in the 'normal' range however since then I have felt much worse and after an episode of crying for a full weekend & generally feeling no pleasure from life/numb I increased my dose (without consultation with my doctors) by 25mg to 150mg. For the last 4 weeks I have felt better, more energetic, happy, less tired & my brain finally works!

I've been to the doctors today and confessed to the additional increase where I was told it was a placebo effect, to stop taking the extra imediatly and we could look at counselling to make me feel better!!!! I don't have a history of depression and although I understand it can hit anyone I genuinely don't have a reason I can think why I'd be depressed.

I have requested another bloody test (which the doctor was very reluctant to do) but have listed below my recent test results.

Can anyone recommend an endocrinologist in the Leeds/Yorkshire area as I feel like my doctors are just not experienced enough and just want to get the results within the 'normal' ranges regardless of how I feel!!

Serum TSH (0.2-4miu/l)

April 2017 0.37

Nov 2016 0.42

June 2016 0.16

Mar 2015 0.08

I have been previously deficiant in serum folate and vit D.

Does anyone have any advise, am I being unreasonable and should I just be happy I'm within the normal boundaries? I can't see how conselling would help my brain fog, coldness, tiredness??

Thanks

Anna

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SeasideSusie profile image
SeasideSusieRemembering

Asnm78 You probably don't need counselling, but if the TSH test is the only one your GP is doing then there's no way that is telling if you are utilising your Levo. TSH is a pituitary hormone.

What you need is FT4 and FT3 testing. This tells you your level of free thyroxine in the blood (FT4) and whether it is converting well enough to T3 (FT3). T3 is the active hormone, the one every cell in our bodies need, so it's actually the FT3 test that is most important yet it's the one test rarely done!

As you've previously been deficient in folate and Vit D, did you manage to get them up to optimal levels and have you maintained those levels?

It would be a good idea to test

Vit D

B12

Folate

Ferritin

These all need to be optimal (not just in range) for thyroid hormone to work. I wouldn't be surprised if you have some deficiencies.

Do you take any other medication?

So you have any gut problems?

Just looking to see if there might be an absorption problem.

If you email louise.roberts@thyroiduk.org.uk she can send you the list of thyroid friendly endos. See who is in your area and ask for feedback from members, which will have to be by private message.

Asnm78 profile image
Asnm78 in reply to SeasideSusie

Thanks for your reply, I have never had a ft3 test only tsh and ft4. I have requested it a couple of times but they have told me it's not a test they do.

I'm currently vit d deficient and taking supplements but yea generally they get me just into the bottom of the 'normal' range they by the time I go back for a blood test they are back to being deficient.

I've had B12 done once but again they are reluctant to repeat.

I don't take any other medication or have gut problems.

I have previously discussed with them about my fears of conversion and absorption but the doctors always seem to brush it off.

I have a blood test on Friday so I might go early and battle with them to do the t3 and others at the same time .

SeasideSusie profile image
SeasideSusieRemembering in reply to Asnm78

asnm68

It is very unlikely that FT3 will be done, even if requested. It's the lab who decides if they are going to do it and that's generally when TSH and FT4 are way off.

You really need those vitamins and minerals retested. Unless the levels were bright up to optimal and then you took a maintenance dose to keep them there, then they will just plummet again if you don't continue to supplement.

It might be an idea to do private testing. You can get a full thyroid panel plus all those vitamins and minerals with a home fingerprick test from Blue Horizon or Medichecks. If there are any problems showing you can take your results to your GP and if he doesn't like them you can invite him to do his own, but you will have proved a point.

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

Recommended levels for us Hypos:

Vit D - 100-150nmol/L

B12 - very top of range, even 900-1000

Folate - at least half way through it's range

Ferritin - half way through it's range and an absolute minimum of 70 for thyroid hormone to work

Thyroid testing is best done early morning, no later than 9am, fast overnight (you can have water) and take Levo after the blood draw.

Asnm78 profile image
Asnm78 in reply to SeasideSusie

Thanks I will look into that private testing, I think it is going to be the best option

Asnm78 profile image
Asnm78

Hi, just an update, my results came back in the normal range. I need to go back as don't know what to do from here!

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