Normal TSH test but still exhausted and hair falling out!

[TiredKaren]

Hi everyone,

I'm new to the site and wondered if anyone could give me some advice. Seven weeks ago i was diagnosed with thyroiditis due to a lump in my throat which when scanned showed the thyroid was inflamed. I was prescribed 75mg of Levothyroxine daily. The ENT wrote to my GP advising I was highly symptomatic but biochemically subclinical hypothyroidism. At that time my T4 was 14.9, T3 4.9 and TSH 5.06. I had a TSH blood test last Friday and my TSH is now 2.06 which is 'normal'. My GP will not offer T3 or T4 tests. I have seen no improvement in my symptoms and have now been taking Levothyroxine for seven weeks. In fact, I'd say the severity of my symptoms has increased. I'm losing my hair and eyebrows at an alarming rate. I'm generally exhausted all the time, I'm in bed by 8pm most nights and struggle to get out of bed in the morning. I feel my medication may need to be increased but worried my GP will keep me on 75mg which has made zero difference.

Any advice before I see my GP in the morning would be greatly appreciated.

Thanks.

Karen

[JennaShi]

Did your gp explain why you cannot get these other tests? They are just as important. Most gps think that only tsh number is important and usually dont pay much attention to the others.

If you cant get these from your gp, I believe you can order them online from stop the thyroid maddness website.

Also I think your thyroid isnt fully optimal, Although I cant remember exactly what the number is sorry, I think tsh of closer to 1 is optimal.

I would also suggest that you get your iron checked. Low Iron also causes hairloss and causing you to feel tired.

Have you been tested for thyroid antibodies? TPOab and TGAB if not, I would suggest getting test for these as well. Most doctors do not test for these as they dont think they are very important either.

[SeasideSusie Remembering]

Karen

Are you in the UK, it doesn't say in your profile.

Your TSH may be 2.06 and is classed as "normal" because it's in range. But it's not optimal for a treated hypo patient. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo if that is where you feel well.

However, thyroid hormone replacement isn't a quick fix, it doesn't work like an asprin. It's a hormone and has to be increased gradually. Many people don't feel fully well until they've been on Levo for months. It took a long time to get Hypo, it takes a long time to get back to a place where we feel well.

Protocol is that 6 weeks after starting Levo thyroid tests are repeated, an increase of 25mcg, retest 6 weeks later, another increase of 25mcg, retest 6 weeks later, etc, until your levels are where they need to be for you to feel well. It can't be rushed. So unfortunately you need to be patient and ensure that your GP follows the protocol.

If you are in the UK, this is the prescribing information in the NICE Clinical Knowledge Summalry:

cks.nice.org.uk/hypothyroid...

Initiation and titration

The dose of levothyroxine (LT4) should be individualized on the basis of clinical and biochemical (thyroid function tests) response. Treatment must be monitored regularly to determine an adequate dose and to avoid both under-treatment and over-treatment.

The initial recommended dose is:

For most people: 50–100 micrograms once daily, preferably taken at least 30 minutes before breakfast, caffeine-containing liquids (such as coffee or tea), or other drugs.

This should be adjusted in increments of 25–50 micrograms every 3–4 weeks according to response. The usual maintenance dose is 100–200 micrograms once daily.

For people aged over 50 years and people with cardiac disease or severe hypothyroidism: 25 micrograms once daily, adjusted in increments of 25 micrograms every 4 weeks according to response.

Once a stable thyroid-stimulating hormone (TSH) level is achieved and an adequate dose determined, arrange follow up to check thyroid function tests (TFTs) at 4–6 months and then annually.

Usual advice given here, regardless of the Summary or what the Patient Information Leaflet or GP says, is to always take Levo on an empty stomach, 1 hour before or 2 hours after food, with a glass of water only, and water only for 1 hour each side. This ensures nothing interferes with Levo's absorption.

When booking thyroid tests, always book the very first appointment of the morning and fast overnight (water allowed) . This gives the highest possible TSH which is needed when looking for a diagnosis, an increase in dose or to avoid a reduction. TSH is highest early morning and lowers throughout the day. It also lowers after eating. Also, take your Levo after the blood draw because if you take it before then your FT4 will reflect this and show higher than what is normally circulating. We usually advise 24 hours between last dose of Levo and blood draw so if you take your Levo in the mornng then delay until after the test, or if you take it at night then delay that dose until after the test. These are patient to patient tips which we don't discuss with doctors or phlebotomists.

Many labs don't test FT4 when TSH is in range. FT3 is rarely tested, my lab does it when TSH is suppressed. Many members here do private testing for those tests the GP can't or wont do.

Please always include reference ranges when posting test results, ranges vary from lab to lab so we need your lab's ranges to interpret your results.

[TiredKaren in reply to SeasideSusie]

Thank you for the comprehensive advice. I'm in the UK, my recent TSH test showed 2.06, range is 0.35-5.00mu/L. My previous test 8 weeks ago my TSH was 5.06, unfortunately I don't know the range. I saw my GP this morning and she said my TSH was in normal range so she would not increase my prescription of 75mg of Levothyroxine per day. I pointed out that the ENT had written to her advising I'm highly symptomatic and he'd referred me to her to manage the increases in my medication. I suggested that my TSH should be under 1 which she would not accept and said that would be too low. Only when I explained the profound effect my lethargy was having on my work life i.e. I've had to cut my working hours by 20% or one day per week, did she agree to increase my prescription to 100mg of Levothyroxine per day. However, she made it clear there are unlikely to be further increases in dosage if my TSH remains at the same level regardless of symptoms. I've to go back for blood tests in 12 weeks! To say I feel let down is an understatement.

[Angel_of_the_North in reply to TiredKaren]

You need to find another GP who actually reads the guidelines as that one will keep you sick, and take a copy of the Dr Toft article that states that TSH needs to be under 1 and Free T4 at the top or even over range in order to convert enough T3 to feel well. And tests should be every 6-8 weeks.

[TiredKaren in reply to Angel_of_the_North]

Many thanks, you're right, I need to change GP. I'll also take a look at the Dr Toft article.