Blood Results - help please

[Lozza812]

Hi, I was prescribed in January after the following blood results:

Serum free T4 level - below range 11.3 pmol/L (12.0 - 22.0)

Serum TSH level - above range 4.58 miu/L ( 0.27 - 4.2)

I was prescribed 100 mcg levothyroxine

Second lot of bloods in March:

Serum free T4 level - Above range 23.1 pmol/L (0.27 - 22.0)

Serum TSH level - below range 0.05 mu/L (0.27 - 4.2)

Effectively my levels have reversed, so reduced prescription down to 75mcg.

Had a terrible appt with my doctor. I was the last appt of the day and she was out the door almost before me! Just said she didn't need to see me again, just a blood test in 3 months and they will ring if they need to. Didn't get a chance to ask anything.

Told her I still felt awful, I had felt better for a couple of weeks but then felt worse with fatigue. Told it wasn't the thyroid, must have been something else as I should be better. Told me I had a large dose to start with because of my bmi, I know I'm big but I was made to feel awful. I just don't want to go back and I feel like it's all my fault.

These are the only tests that have been done and I don't know where to turn next.

I would be grateful for some advice about the results as I am number blind and they mean nothing to me.

[shaws]

When you went for your second blood test did you have it at the very earliest time and allow a gap of 24 hours between your last dose and test and take it afterwards. Also don't eat before a test.

Once we are taking thyroid hormones they should ignore the TSH as that's from the pituitary gland and rises when there's not sufficient thyroid hormones in our body. Most doctors however believe, wrongly, that if the TSH is too low we will get a heart attack etc. More likely to get problems when dose is too low and they should also make sure our vitamins/minerals are optimum as well.

There was three months gap between your iniitial dose of 100mcg and your next test. It is a pity your Free T3 wasn't tested along with the FT4. The reason is in this link of why both are essential at times to be tested.

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

[Lozza812 in reply to shaws]

Hi Shaw, It was an early test with no food, meds etc.

[Pink1123]

Please don't feel awful. I was made to feel bad by my endo but I am considering ditching him as he's so clueless! Big hug x

[Lozza812 in reply to Pink1123]

Thank you! I can't believe I am sitting here crying because of all this. I think it was the total dis-interest when I have been struggling for years. The first time I saw her she seemed ok, in fact she too had hypo.

[Pink1123 in reply to Lozza812]

I know the feeling. Oddly enough I had a doctor once who was hypo and she didn't understand how I felt at all. I felt so disbelieved.

[greygoose]

Sounds to me like you need more in-depth testing - FT3 and antibodies. But, obviously, you won't get it from your doctor. Would you be in a position to get private testing?

[Lozza812 in reply to greygoose]

I've just ordered the medicheck ultra, hopefully that will be more useful

[greygoose in reply to Lozza812]

I'm sure it will. The FT3 is the most important number. When you get the results, post them on here, with the ranges, and let's have a look.

[SlowDragon Administrator]

Normally we moan that doctors are too cautious starting so many people on only 25mcg when 50mcg is standard starter dose. Your doctor started you on a high a dose

We often have to start slowly and build up.

Reducing to 75mcg will probably be better after a few weeks. You will need retesting after 8 weeks

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take 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)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get tested.

[roxanaleah]

Hiya,

Not only was your doctor painfully cavalier about your symptoms, she was also ill-informed about the relationship of BMI to supplemental thyroid hormone dosing. It actually works somewhat counter-intuitively.

ncbi.nlm.nih.gov/pmc/articl...

[JMHW]

First, loads of sympathy to you! You are not alone.

I agree with SlowDragon that 100mcg is much too high for a starter dose. Your doctor was at fault – it is standard practice to start at 50 mcg and then keep testing to see how much to build up gradually, if needed.

I would also emphasise very stongly that your symptoms and how you feel are a crucial guide to your optimum dose. It takes quite a while for the body to settle into a new dose so do give it plenty of time, then see how you feel.

On this site there seems to be a general consensus that a very, very low TSH is the best reading, but that is not my own personal experience. I feel absolutely hyper (which is very distressing) and lose weight fast (not in a good way) unless my TSH and my T4 are roughly mid-range. That means I had to go back to 50mcg, as the 75 dose sent me crazy. Every body is different so only you can find out what is best for you.

Changing doctors is a priority! Finding a sympathetic GP who does understand how upsetting and complex thyroid problems are would be a start. Mine is not an expert but does listen to me and has referred me to endo clinic when necessary. She is also happy to change the dose on the basis of my symptoms, not just the test results. That has made it all liveable with for over ten years now. I hope this is helpful and encourages you to put yourself at the centre – neither bad GP nor other people online necessarily know what is right for YOU.

[Lozza812]

Thank you everyone, I guess that I sort of hoped that thyroxine was going to be the magic bullet and I was so disappointed when that wasn't the case. I know I'm not right, I've known it for years and I hoped this was an end, not another beginning. But, hopefully I will get there eventually. Will need help again when the results come back. Thank you again, you guys are fab!