Different doctors telling me different things...

[Bleugh]

Im new to this site so please bare with me! I have had several blood tests recently and all but one came back showing that I have underactive thyroid, but only just. I have other symptoms such as severe muscle pain, dry skin, fatigue, bowel problems, and headaches. I saw a consultant yesterday who suggested I start treatment for underactive thyroid as my sumptoms are in line and he said lots of things can effect the blood tests. But when I saw my GP today she said that because my last test was in range she doesn't agree I should be on medication and offered no explanation for my symptoms. Very frustrated as have been feeling awful for months now! Anyone else have the same issue with blood tests? The one she was talking about was taken in the afternoon and all the rest were first thing in the Morning, would this affect it?

[SeasideSusie Remembering]

Yes, an afternoon blood draw would give a lower TSH than an early morning blood draw.

Did you get an NHS referral to the consultant? Is s/he an endocrinologist and going to write to your GP recommending that you start Levo? If so then GP shouldn't go against consultant's recommendation.

[Bleugh in reply to SeasideSusie]

It was an NHS referral from the doctor I had been seeing before. But to a rheumatologist for leg pain. The other doctor previously told me that I was developing hypothyroidism and that if symptoms continued they would start me on treatment but different doctor today said that she doesn't agree despite having all the previous tests. The consultant has written to them but she said she hadn't recieved the letter yet... She wrote a prescription in the end for 50mg but said that she doesn't believe it will help and was only giving me it because I insisted. Completely different message to the previous doctor and it was very upsetting. Consultant yesterday was very helpful and understanding and said he dooesnt see why I wasn't on levo already due to my symptoms.

[SeasideSusie Remembering in reply to Bleugh]

At least you've got your Levo.

Best thing to do is start keeping a record of test results, how you feel, etc. Hopefully you will be able to show that the Levo is helping.

[greygoose]

Getting your blood tested early in the morning, can make the difference between getting diagnosed and not getting diagnosed, given that TSH is highest early in the morning, and drops throughout the day. It also drops after eating.

Did you get copies of all these results? If not, then ask for them. If you live in the UK, it is your legal right to have copies.

[Bleugh in reply to greygoose]

Didn't get copies but I will ask for them! Thanks! Seems to be so difficult to get help

[greygoose in reply to Bleugh]

Yes, it is difficult. That's why we have to help ourselves.

[SlowDragon Administrator]

Suggest you consider seeing a different GP at the practice if she is unhelpful

A consultant is the expert, GP is a generalist.

Always get actual results and ranges on all tests

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need enhanced access to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can up until May this year, make nominal charge for printing but many will do so for free (£10 max). After a May can not charge a fee (new EU rule)

If you come back with a new post Once you get results and ranges for TSH, FT3 and FT4, plus you need to know if you have also had thyroid antibodies tested

Also very helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

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

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take 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

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

[Bleugh in reply to SlowDragon]

Thanks for your advice. I just called the surgery and they said I can go in and pick up the actual results next week. I know my folate, vitamin B and D are low as I was prescribed tablets for D and Folate which I have been taking. I will try and see the previous doctor for next appt as she was much more helpful and even said it is thyroid so don't know why today's doctor would completely disagree. Or prescribe drugs she doesn't think will work... Very frustrating process but glad I'm not alone!

[SlowDragon Administrator in reply to Bleugh]

There's over 75,000 members on here. Difficulty getting diagnosed is extremely common

[Hidden in reply to Bleugh]

You have to try to be strong to deal with these doctors. When you pick up your test results post the details on this site with the ranges. Include the medications that you were on at the time and what time the test were taken in the day.

I did this and I am now back to feeling well again, you will too. It does take time and patience but it's worth it.

[shaws Administrator]

You would think levothyroxine was actually made of gold as doctors hang onto this product whilst ignoring all the patient's clinical symptoms. The fact they know none doesn't help and they only go by the TSH alone, so that's why it is recommended the earliest possible appointment, fasting (you can drink water) and allow a gap of 24 hours between last dose and test and take afterwards. This helps keep TSH at its highest and may prevent an adjustment (down) which we don't need.

You take levo first thing when we awake with one full glass of water and wait an hour before eating. If this is inconvenient you can take it at bedtime as long as stomach is empty (it takes about 2.5 hours if we've eaten as our digestion has slowed too). If you decide bedtime dose, miss this if having a blood test next a.m. and take after it and night dose as usual.

We also need B12, Vit D, iron, ferritin and folate to be tested as deficiences also can cause problems and everything has to be optimal.

[Milly79]

Yes my afternoon thyroid tsh blood test was lower in the afternoon. Had it repeated one month later and again after 2 months and they were double the level!!