Signing up for online medical records - Thyroid UK

Thyroid UK

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Signing up for online medical records

jankei
jankei

Just went to the surgery to register, but didn't have ID with me, so have to go back. However I mentioned that I wanted to look at my blood test results, and the receptionist printed some up for me there and then.

When the doctor started me on Levo, on 22nd May this year, my results were S thyroid peroxidase ab conc 254 iu/ml (0-50) (RS16748) >75 iu/ml. Serum TSH 9.9 mu/L (9-24). Serum Free T4 12.1 pmol/L.

The receptionist also printed up test results from April last year 2017. and the peroxidase result were 435, suggestive of autoimmune thyroid disease. TSH was 6.7 and T4 12.4, All same lab figures.

I am guessing that the Doc was only going by the TSH of 6.7 and when it reached 9.9 this year he decided to put me on meds. If that is the case, what a waste of time for me and my health, could have started on treatment years ago maybe? When I get full access to my records, it should make interesting reading!

Up to 50 on Levo, blood test next week. A bit up and down, mainly down though.!

14 Replies
oldestnewest

I so feel for you! Although I work abroad and have always had private cover, I was left for six years with high TSH but under 10 and gradually developed more and more hypo symptoms until I thought I was losing my mind and just couldn't function. My result was actually overlooked. This bench mark of a TSH of ten needs to be reconsidered. One wonders just how much irreparable damage happens to the body because hypo symptoms are intercepted so late? We will never know. Once again I find myself asking why do the medics not listen to patients?

jankei
jankei in reply to Baobabs

Thanks for your reply. How are you feeling now?

Baobabs
Baobabs in reply to jankei

So kind of you to ask. Well it has been a roller coaster ride for almost two years and I am still struggling, trying to juggle with T3 and T4 doses. My Endo says feeling better happens quickly BUT when you read experiences on this forum it tends to be a fine tuning journey. You often have to fight for what you need so you must!

SlowDragon
SlowDragonAdministrator

Yes your GP probably could/should have started treatment a year ago. TSH was above range and antibodies very high

But you are where you are, and moving forward you will be needing bloods retested 6-8 weeks after your increase up to 50mcg.

Also ask GP to test vitamin D, folate, ferritin and B12

These are very often too low with Hashimoto's. Improving any that are low with specific supplements can help improve the thyroid hormones working and often makes significant difference

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, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Presumably you know to always take Levo on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased or at repeat prescription.

Many patients do not get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

jankei
jankei in reply to SlowDragon

Thanks for your reply. Is this a silly question - how do I know if the brand I am on, currently Mercurypharma, suits me?

SlowDragon
SlowDragonAdministrator in reply to jankei

Good question...... obviously you don't really know at this stage

Stick on same brand at each repeat prescription.

( best avoid being given Teva, unless lactose intolerant)

When was your blood last tested ? Were you started on 50mcg ? - if so then you should have been re-tested 6/8 weeks after starting treatment with the appropriate increase.

Please make sure you write a letter of complaint once you have all the figures and the appropriate evidence and ask for it to be attached to your notes. Your treatment has been negligent.

Have you had B12 - Folate - Ferritin and VitD tested ? Results need to be OPTIMAL for your Levo to work and for you to feel well. Post results with ranges here as GP will say fine/normal/ok - if they are just in range ... :-(

jankei
jankei in reply to Marz

Thanks for your reply. I was started on 25mcg, due to my advanced age, 69? and took for six weeks, then retested and put on 50mcg. Another test due next week. I need to get the vits done if I can. Early test booked this time as last time it was afternoon. Gradually learning the ropes!!

Marz
Marz in reply to jankei

You are doing fine 😊

You're actually one of the luckiest one.

I've had three years of back and forth with doctor and thyroid problems and when finally diagnosed TSH was over 74 and t4 below bottom range and I was pretty much comatose at that point.

And I'm not the only one being messed about for years on end. I've seen some people TSH results with TSH 200! That takes years of severely underactive thyroid.

But I agree - they waste people's health and life's not treating properly and on time.

Now wait till you start having battles with your GPS for appropriate treatment to get you back to normal.

jankei
jankei in reply to trelemorele

Sorry to hear that. At my age there aren't so many years to get things right I'm afraid.

trelemorele
trelemorele in reply to jankei

I hope you'll get back to best health ASAP. I'm.sorry to hear that, I didn't mean to put dumper on it.

All the best, stick to this forum you'll Lear a lot. 👍😊

Bluedragon
Bluedragon in reply to jankei

Hey - you could have another 30 years in you yet! Plenty of time. X

jankei
jankei in reply to Bluedragon

Now there's a thought.....xx

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