Being tested for chronic fatigue: I'm having lots... - Thyroid UK

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Being tested for chronic fatigue

elkclan profile image
6 Replies

I'm having lots of trouble lately with fatigue, muscle and joint pain, tingly hands and feet and fuzzy headedness. I feel awful. I'm on 50 mg(?) of Levo right now and have asked for an increase but since my bloods are TSH 4.79 (top of reference 5) and F T4 11 (ish - can't remember exactly) they say I'm NORMAL. I' don't feel normal.

They've sent me off for another range of blood tests including immunuglobin and Vit D and coeliac screen (I'm not sure why) but refuse to consider increasing Levo dosage.

I'm so frustrated since I think my symptoms are much more likely to be attributable to hypo than chronic fatigue.

What should I do or ask for at my next appointment? I feel desperate.

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elkclan
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6 Replies
shaws profile image
shawsAdministrator

Change your doctor quickly. He's another who knows zilch. He may well cause you to get more serious diseases (if that's possible) as I am sure you feel bad enough on 50mcg only of levo. You have clinical symptoms and they don't know or recognise them because your dose is too low.

Sometimes I think these medical people are demented because they don't make sense.

Please email louise.warvill@thyroiduk.org.uk and ask for a copy of the Pulse online article by Dr Toft. Read question 6 and send a copy to your GP highlighting the part of the question and say you want your TSH to be 1 or below. (you might not need below 1 but say so anyway as Dr Toft does).

When you go for a blood test, leave 24 hours between levo and your blood test, take levo afterwards, as it can skew results. Also have appointment as early as possible.

Why doctors make mistakes when diagnosing patients is they are told to go only upon the TSH. If someone has symptoms doctors are told to wait till the TSH goes to 10 before prescribing. (horrendous), so they assume when patients' TSH gets to 'normal' range they have sufficient levo. That's very wrong. Normal range (I believe) should only be used for the initial blood test but symptoms should be taken into account.

Make a new appointment for a new blood test. These should be done every 6 weeks with an increase until you are well.

shaws profile image
shawsAdministrator

I forgot to say always get a copy of your blood test results, with the ranges, for your own records and so that you can post if you have a query. We are entitled to copies of our blood tests. Take levo with 1 glass of water first thing and wait about approx an hour before eating. Some foods can interfere with the uptake of levo.

elkclan profile image
elkclan in reply toshaws

I get copies, but I just didn't have it with me when I posted.

shaws profile image
shawsAdministrator in reply toelkclan

That's fine - you can post next time.

shaws profile image
shawsAdministrator

Re CFS - this is an excerpt by a Dr who all on his own began to take issue with the guidelines of diagnosing thyroid gland dysfunctions. He was a Virologist and unfortunateley died unexpectedly of a stroke. Just for your information:

worldthyroidregister.com/Go...

Kel8 profile image
Kel8

Great advice already given but just wanted to agree that your TSH is far too high. You are on Levo so it should be much lower. I only felt marginally better once mine was lower than 1. Don't be afraid to disagree with your doctor.

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