Disappointed

[Vespa10]

Seen my GP today. Thyroid blood tests are in normal range. 37 symptoms on the thyroid list. Temperature hovers around 35.6 most of the time. Low blood pressure, slow heart rate. GP has referred me to endocrinologist but with normal blood tests I’m not hopeful. Am I likely to get more joy going private? Why why why can’t I just try Levothyroxine for a few weeks to see if it helps? Any advice?

[knitwitty]

Could you put the results with their ranges please, it will help people to see the full picture before they comment.

Also it is not unusual to suffer from symptoms for a long time before blood tests show a problem.

[Vespa10 in reply to knitwitty]

TSH 1.47 (0.27-4.2)r

FREE T3 4.8 (3.1-6.8)

Free thyroxine 16.3 (12-22)

Thyroglobulin antibodies <10(<115)

Thyroid peroxidase antibodies <9(<34)

Only new significance is folate level

Folate 3.26(3.89-19.45)

Vit B12 70.5(37.5-187.5)

Vit D 144(50-175)

Ferritin 103(13-150)

Previous blood test showed

High creatinine

Low phosphorus.

[DippyDame in reply to Vespa10]

Your blood tests are not normal and your GP is clueless, like so many others.....that is why you are not being prescribed levo.

You shouldn't need to see private medics with those results...no guarantee they're any better than the NHS anyway.

Your FT4 is 43% through range and FT3 is 45.9%...both far too low!

You need levothyroxine to raise both to around 75% and to lower TSH to around 1

Ridiculously medics now tend to diagnose by TSH ignoring clinical symptoms, of which you clearly have many.

The state of care for thyroid disease is appalling, if it were otherwise this amazing forum would not exist.

Your nutrient levels need to be raised....folate and B12.

Hopefully the endo you visit is more knowledgable, but be prepared to put forward a case for levo.....he/she may not be any better than you GP!

Other members will be able to add to these suggestions

Best...

DD

[Marz in reply to DippyDame]

Hi DD - the B12 result is for the Active Test so around 70 is fine I have read .. 🎁

[DippyDame in reply to Marz]

That was stupid of me.....no excuse. Thank you Marz .

[Vespa10 in reply to DippyDame]

Thank you so much for your informative reply.

[vocalEK in reply to DippyDame]

Your FT4 is 43% through range and FT3 is 45.9%...both far too low!

I don't care what your thyroid hormones are doing, I am treating you based on how well your pituitary is functioning. That's what the practice standards tell me to do.

[Vespa10 in reply to vocalEK]

What a pity GP’s don’t agree with you!

[Lora7again]

Your TSH is slightly high which can affect you for example mine is 0.70 and I feel great because this is normal for me but when my TSH was 0.95 I felt hypo. We are all different and I think your TSH will continue to rise but it could take years before it reaches a TSH of 10 and that is when the NHS will treat you .... they like us to suffer before they actually do anything about it. The NHS can be great when it is helping you and I actually worked for them and my husband was a hospital manager for over 20 years before he retrained in the law. The NHS is badly letting down thyroid patients who are mainly women .... would we be treated differently if it was mainly men? I honestly think we would be because a Doctor sees an overweight middle aged woman and think either menopause or over eating. They did in my case and gave me hormone patches instead of treating my Graves' disease or over active thyroid. I waited for over 2 years and kept going back to my GP time after time and was fobbed off and offered counseling and antidepressants for my thyroid disease which is disgusting but which is being repeated all over the UK and in other countries. Doctors need to be educated about thyroid disease in my honest opinion but they don't seem to be interested in gaining any knowledge about an illness that has a big impact on your overall health. I lost hair my nails lifted off their nail beds, my eyes became blurred, I lost my sense of taste and smell. At one time I was a size 8 and could not keep the weight on my family thought I had undiagnosed cancer instead of an over active thyroid. I have delusional written on my medical records because of my behavior I actually had my husband arrested because I thought he was out to get me ... this is what Graves can do to your mind and body when it is left untreated for many years. Don't let yourself become as ill as I became, take control of your health and if you have to self medicate and do your own blood tests you will get help and advice from this site. This site and others in the US have helped me more than any Doctor has and I have actually given up going to my GP now except for minor illnesses like blocked ears which I recently had syringed by the nurse. Sorry to ramble on but I feel strongly about the way thyroid patients are being neglected by the NHS.

[Vespa10 in reply to Lora7again]

Thank you. Interesting!

[Batty1 in reply to Lora7again]

Lora7again, So true. I have been to hell and back without a thyroid and every issue I have is never my hormones it's always something else.

[Wwerty]

It’s so annoying, I’m going through the same thing, except I was on levo and they stopped it because of side effects my tsh has gone up to 3.1, my Blood pressure is low also, I’ve got loads of symptoms that have come back at 100miles per hour and they still won’t give me it saying that they aren’t thyroid symptoms so they have started me on b12 injections, I’m so fed up of feeling ill,

[Lora7again in reply to Wwerty]

I'll start again .. what side effects? because if you are undermedicated you can become more hypo because the pituitary gland stops stimulating the thyroid to produce thyroxine. So you probably needed to increase your dose. Usually you are started on 50mcg for 6 weeks then a blood test and then an increase of 25mcg until you feel well.

[Wwerty in reply to Lora7again]

The brand I was on made my palpitations worse and it made me feel dizzy so they decided that I don’t need levo and that I don’t have an under active thyroid even though I test positive for antibodies and my tsh was above range twice

[Lora7again in reply to Wwerty]

What dose were you on? because a too low dose can give you palpitations as can a too high dose .... some of the symptoms for over active and under active thyroid can be very similar.

[Wwerty in reply to Lora7again]

I was on 25, then 50 and 25 alternate days then 75, when on 75 it gave me chest pain so they dropped it back to 25 and that’s when all my problems started and when they stopped it it’s just got worse, they stopped it 9 weeks ago and my tsh was only down to 2.7 and t4 was 15, I feel like death warmed up

[Lora7again in reply to Wwerty]

You should not be increasing and decreasing doses like that ... no wonder you felt dizzy. The Levothyroxine takes weeks to get into your system. If I was you I would try NDT which is easier because it contains both T4 and T3 and is very natural.

[Fruitandnutcase in reply to Lora7again]

Too right Lora7, every time I needed an increase of levothyroxine when I was being treated with block and replace I got hyper symptoms - palpitations etc. Horrid.

I thought I was becoming hyper again but someone on here said I was probably needing more levo and sure enough - an increase in levothyroxine sorted things out.

Hope someone can sort you out Wwerty.

[Lora7again in reply to Wwerty]

Have you tried a different brand or even NDT? I have been on both Levothyroxine and Thyroid S.

[Wwerty in reply to Lora7again]

They won’t give me anything, keep telling me it’s all in my head so after writing to the practice manager they have come up with offering me b12

[Lora7again in reply to Wwerty]

Just order NDT on the net and treat yourself that is what I and other members have done because GPs will not help us. Read my profile it tells my story.

[Muffy]

What time of day dad you have your blood test? Was it early morning?

[Vespa10]

Early morning.