I was diagnosed with ME/CFS in 2004. Despite p... - Thyroid UK

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I was diagnosed with ME/CFS in 2004. Despite pacing I have less and less energy many new problems. I asked my Dr for Thyriod tested.

Finsterjo profile image
6 Replies

My results are TSH 1.3 and T4 12.2 and I am told by my doctors that this is normal and there is nothing wrong with my thyriod? My Dr refused to test for antibodies unless I was outside normal range. I am cold all the time, have brain fog, skin is flaky and dry often itchy despite good skin care routine and my hair is brittle and snapping ( my hair was always big and thick). I have no energy. It take hours for me to fall asleep despite how exhausted I am and then I cannot wake up once I nod off. Any sleep is unfreshing.I have joint pain but no inflammation worse in my hand and wrists. Much worse in the cold and or damp . I have had 5 miscarriages over recent years. I was pregnant first attempt each time.I already had a daughter (8 years ago) first ever pregnancy with no problems at all ( I was diagnosed with ME then too) Fertility expert could find no cause for the miscarriage. Few tiny fibroids not in the way and too small to cause issues. I finally managed to carry a pregnancy but developed pre eclampsia and a prem low birth weight baby boy. The experts said the low birth weight was due to the pre eclampsia. I have read that this can be related to untreated thyriod illness. I am also on Propranolol 2 x 10 mg for fluctuating high BP. Could this impact my TSH and T4 results at all? Thank you in advance for any information you may provide me. Jx

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Finsterjo
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Totoro profile image
Totoro

I'm sorry you've been having such a bad times of things, many hugs.

The first thing I noticed is that your T4 is on the lower end of a regular reference range (each laboratory can have slightly different reference ranges so do ask for the reference range that went with this blood results next time you see your doctor). To give you an idea, my lab reference range for T4 is 9 - 21.

Then I notice you're taking Propranolol. Propranolol inhibits the conversion of T4 to T3, so with an already lowish T4 I wonder how much of that you are converting and if your T3 is under range.

I would go to your doctor and ask specifically for your T3 to be tested. This is for two reasons. One is that some people have a conversion problem and you'll never know if you have this problem until you're tested.

The other is that you're taking Propranolol which inhibits the conversion of T4 to T3 (if you look on the information leaflet with your medicine box you'll see Graves listed which is hyperthyroid patients). When I took it when I was also taking levothyroxine it made me like a zombie, it must have blocked out a great deal of my conversion, I was only able to take it for two days because I became a danger to myself when crossing roads etc.

All of the symptoms you mention are hypothyroid symptoms. They can also be symptoms of other illnesses but it really is worth getting your T3 checked. I'd ask for anti bodies to be checked too. You're really ill and if there is a possibility that if you are hypothyroid you can be made much better and that's worth getting tested for.

There is also a chance that your pituitary gland may be malfunctioning. That can result in a normal TSH and a low T4/T3.

All the best,

Totoro xx

Finsterjo profile image
Finsterjo in reply toTotoro

It is very good of you for taking the time to provide such extensive information. I will take your advise and go back to the doctors. Jx

Excellent advice above! I would also add, if your GP will not do the testing, you can have some private testing done:

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

I would also suggest getting your B12 tested - preferably the Active B12 test:

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

Louise

x :-)

Finsterjo profile image
Finsterjo in reply to

Thank you kindly I will add this to my wish list and get back to the docs. Jx

your T4 is pretty low despite your normal TSH so secondary hypothyroidism could be an issue. Propranolol also acts like an anti thyroid drug so that could make you feel hypothyroid. Try and get a full thyroid checkup including T3 T4 and TSH. Ideally Free and total levels of T3/T4 too. If they refuse you can always pay to have it done privately/through the internet. I believe you can get a discount though thyroid uk.

Finsterjo profile image
Finsterjo

Thank you for your prompt informative response. I will go back to the health centre and try my luck with another doctor. Failing that I will try the private test route. Do you think it would be relevant for me to obtain copies of my health records dating back to pre ME/CFS diagnosis to check for any previous thyriod results, to compare how it has changed. When I was first diagnosed (a and part of the year up to that) at another practice they ran many bloods tests over a period of 6 months.

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