Seeking help with blood results and whether to have private test and which ones?

[Carcrazy]

I’ve recently joined the group after being diagnosed just before Christmas. I’ve just got my blood test results and could do with some help knowing whether to get a private blood test . I’m not doing very well physically or mentally and still have a lot of symptoms. Not sure which blood tests to have as only had limited testing from GP. I’m so tired, weary and in pain( suffer from chronic pain long term). I’m on levothyroxine 50mg which was doubled in January as I felt so unwell. The Dr says my blood test is fine and I should be too...I wish! The insomnia is the worse, I only sleep 1-4 hrs nightly if at all and it’s really getting me down. I don’t know what blood tests to have. Whether to start vitamins and minerals to see if they will help give me a better quality of life. My first post I explained how the last 16 moths + have been very complicated and pretty stressful and knowing there was something wrong with me, but unsure as to what. My Dr was reluctant to do blood tests and was surprised I had an underactive thyroid as he kept saying I was depressed, which I was! The fatigue and foggy brain have been crippling and not helping as I’m in the process of downsizing, even that is turning out not to be straight forward. Never having done the process on my own before. ( my husband died of pancreatic cancer November 2019). Anyway I’m not getting to the point. My serum free T4(pmol/L) on 16/12/2020 was 14.7. This was not repeated on second blood test of 14/01/2021. SeumTSH level(mix/L) on 16/12/2020 was 12.37(+). On 14/1/2021 was4.78. ( quite a drop). I had requested a cholesterol test to check. On 14/1/2021 serum cholesterol/HDLratio(mol/mol) was 4.2. Serum triglyceride levels(mol/L) was 2.54(+). Seum HDL cholesterol level(mol/L) was 1.3. ThecDr said my cholesterol was slightly raised and no treatment needed at present. No other tests were done. Really don’t know where to go from here. I have a further blood test on 26th February (rung by surgery, but haven’t seen/spoken to Dr. So presume it is a repeat test). All I would like to feel is even a little like my old self! Also hopefully the itching will improve, especially at night. I’ve tried various remedies with little effect.. Thankyou everybody for your support since joining the group. Kind regards car crazy.

[Lynsie1]

Hi Carcrazy, I have just joined and notice your dilemma, what I recently discovered is that my GP does not include T3 in the blood test and could be useful, a referral to the endocrinologist does do the T3 test plus has extensive knowledge on the subject, or should have and that may be the next helpful step for you. I hope this is helpful.

[FancyPants54 in reply to Lynsie1]

Oh dear! I'm afraid you are going to be sadly disappointed if you think an endocrinologist is going to have extensive knowledge of thyroid. You might be fantastically lucky and find one. But most are diabetes specialists and don't know much about thyroid unless you are text-book patient. We have to learn this stuff ourselves and tell our medics what we want most of the time, and then be politely insistent until we get it.

Some endos at least try to help. But they are just taught so little about this crippling disease.

[Lynsie1 in reply to FancyPants54]

You are absolutely right and have I suffered for decades with the appallingly poor service. However, if you go to them with your knowledge and insist it may work/help as I just found out recently.

[Carcrazy in reply to Lynsie1]

Thanks very much for your advise.without everybody’s input I don’t know what the heck I would have done!

[SlowDragon Administrator]

14/1/2021

TSH was 4.78

Nothing else tested

On your first post you started on 25mcg levothyroxine (Teva brand )

After test in Jan, dose was increased to 50mcg (Mercury Pharma brand)

Can you confirm are you taking 50mcg now?

Ask GP to include testing of B12, folate, ferritin and vitamin D at blood test on 25th Feb. Plus request thyroid antibodies tested to see if cause of your hypothyroidism is autoimmune thyroid disease

If they refuse to do these or lab don’t do them, then definitely get private testing done

[Carcrazy in reply to SlowDragon]

Hi SlowDragon. Sorry haven’t replied before now. Believe it or not my body just gave in after a year of little or no sleep I’ve nearly slept all day! I’m still on 50mg of levothyroxine. I’ve decided to cancel my blood test on the 25th of February and get a) an earlier appointment in the day as fushia-pink advises. 2) make a telephone appointment to discuss having the blood tests you recommended. I’m not optimistic but it’s worth a try. If not I’ll get privately tested. Thank you so much for your support it’s really helping me live through this when I’m feeling so alone without my husband who was always my rock in these situations. When I last wrote with my blood results it was 4am in another sleepless night and I was worried I was making sense as my head was all over the place...all I can say is I’m so grateful to have found the group.

[SlowDragon Administrator in reply to Carcrazy]

Dose levothyroxine will need slowly increasing upwards in 25mcg steps until TSH is likely around one or lower

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until eventually on, or near full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

[Carcrazy in reply to SlowDragon]

Thank you again! With this information I’ll feel much more confident having a conversation with the doctor(although they don’t always like this very much). Hopefully it will be a positive outcome.

[fuchsia-pink]

TSH is still too high - though I appreciate it's a lot better than it was

Once you are on levo the aim is to increase your meds slowly slowly every 6 - 8 weeks until TSH is less than 2 - probably less than 1 - and your actual thyroid hormones are nice and high. That means testing free T4 (which doctors are usually quite happy to do) and free T3 - arguably the most important result as this is the amount of active thyroid hormone you have, which is needed in every cell in your body, but which doctors (and labs) are much more reluctant to test. And the key nutrients SlowDragon mentions, because these are important and so often us hypos are too low and need to supplement. I have had some success with my GP by saying that these are the tests recommended by Thyroid UK.

Always have an early morning blood test (when TSH is highest) and get your actual results (and lab ranges) afterwards - the lab ranges vary from lab to lab. Last time my bloods were done, at the GP, I was told that due to Covid I had to ask for the results in writing, so I took a piece of paper with the request in with me and dropped it off before I left the building.

It is possible to feel properly well with an under-active thyroid, but it often takes time to get the dose right, so you need to be patient. And kind to yourself, as you have had so much to deal with recently. Be brave, be strong and don't let them get away with saying you're getting old, or depressed when we can all see that your TSH is too high! x

[Carcrazy in reply to fuchsia-pink]

Hi fuchsia-pink. Thank you for your helpful reply. I’ve replied to SlowDragon but wanted to let you know I’m taking your advice and changing my blood test appointment time to an earlier time in the day. I’ve had a few problems with my surgery which unfortunately means I’ve lost confidence in the doctors and try to have as little communication as possible. Would have changed practice but with social isolation and lockdown things are more difficult. Anyway I know I keep saying this but I’m so thankful to the group and for the support and advice I’ve had. Thank you too.

[FancyPants54]

It's hard to read your results written out in a paragraph like that. Try to put them into posts in list form next time.

So your GP has declared you fine with a TSH of 4.78. Whilst that might be just about inside the top of the reference range, it's way too high for someone on Levo. You need to aim for a TSH of around 1 to feel good. So your GP is not very well versed on thyroid. What a surprise!

You are currently on 50mcg Levo. That's still a starter dose. With this result you need a 25mcg increase each day. Putting you on 75mcg and retest again in 6-8 weeks to see if you need another 25mcg dose increase.

You are going to have to fight for this by the look of it. Phone him back and say that you are sorry, but that you disagree that you should be well. You don't feel well and you would like to bring your TSH down further and therefore you want to try an increase to 75mcg a day. If you have alternative GPs in the practice, perhaps try to speak to them about it. You will have raised cholesterol with under active thyroid. Your cholesterol will level out if you get your thyroid better balanced. I'm sorry it's such a struggle. We should not have to fight for things like this, but we do I'm afraid. We have to advocate for ourselves.

[Carcrazy in reply to FancyPants54]

Hi..I did try to put my blood results in a list format but my iPad was playing up and it took me an age to write it. It didn’t help it was for 4am tired and desperate! But felt better after writing it.I’ve seen 2 doctors in the practice now and a third has asked for this repeat blood test. I did call the doctor and said I still didn’t feel well but I was told my blood test was okay and I should be. ( this was before I was advised by SlowDragon to get my blood results). It’s difficult to know whether to change practices when I’ve just recently been diagnosed and persevere, or make the change and start from scratch. Probably sounds silly I’m usually an independent self assured person but I’ve lost my confidence and making decisions has become difficult. The treatment before and after my husband was diagnosed with pancreatic cancer and died, and I was already feeling unwell but told I was depressed and it was probably due to my pain meds for chronic long term pain causing me to have all the the symptoms I had has been hard but it all seemed to merge. I will try to be more assertive and fight for myself to feel better. I’m now armed with information and I thank you very much for the advice you’ve shared. It is a massive help to me at this time in my life.