Still feeling rubbish ?

[Lemondrizz1]

Please forgive my reposting this - but as I have had a few problems with my emails - I am not sure you will have received this -

Thank you Ladies - for getting back to me so quickly -

Just to confirm that the T 4 range is correct for the 4/5/23 NHS test -

The 12 - 22 range was for the Medichecks test.

Your suggestion of increasing my Levo is music to my ears and what I feel my body is crying out for ?? My GP is lovely and is happy to work with me so just hope that he will agree ?? I am still suffering with Brain Fog and concentration problems and when I read TSH 0.12 - I was thinking it had gone down even lower !! But that is good news, as hopefully if I increase the Levo - then my T4 should increase again.

How much should I suggest increasing the Levo please - as I have to wait until 16/5 for my GP appointment - I may start the increase straight away ??? In the hope of feeling a bit better.

Please can you also give me the optimal percentages through the ranges for the best chance of feeling well ?

I did have very sore, burning feet with shooting pains and very severe palpitations but these have now disapeared with the B12 injections - as I have had all the other symptoms for almost two years - I guess it will take a while for them to go - I realise from reading on the forum how lucky I am that I am being listened to by my GP and he is allowing me to continue with the injections EOD. I don't think he understands it, but when I had to go over a weekend without an injection - I felt so ill and it felt as if I was dying - so he has allowed me to SI to overcome this.

Red Apple has suggested that my feeling rough might be diet related ? I am willing to try anything so could you please expand on this please.

Thank you all once again.

Lemondrizz.

[GlowCoach Administrator]

Posts get buried very quickly here!

Your FT4 is only 48% of its range (with the 10-22 range). Are you taking Levo on an empty stomach an hour away from food or caffeine containing drinks or other meds?

From your January Medichecksresult it does look like you convert OK

You may struggle to get the increase as your TSH is still low but try for 12.5mcgs and tell them you want to trial it. This seems less scary for some GP's.

For folate your Medichecks result in January looked good but has now dropped off. Have you stopped supplementing? At the moment it looks like you could add in a separate 400mcg methyfolate.

How are vit D & ferritin levels looking?

Do you know if you have Hashi's/autoimmune hypo? Many people feel better with a gluten free diet who have Hashi's. A smaller percentage of people further need to remove dairy from their diet?

How is your gut function generally?

[Lemondrizz1 in reply to GlowCoach]

Jaydee - Many thanks much appreciated - no worries - but very much value your advice.

Yes I am - Yes to all the Levo taking requirements - and also taking the Vit D four + hours away from the Levo.

I have learnt so much from reading on this forum and want to give myself the best chance -

I too was concerned about the low TSH and the 12.5 extra Levo trial seems a good plan and hopefully one that my GP will allow me.

Medichecks - Vit D was 85 in January - my GP did not think necessary to check again now so I am taking 1000 Colecalciferol Vit D prescribed by my Rheumatologist but have added in one AdCal-D3 (Calcium Carbonate and Vit D3 in addition to hopefully keep my Vit D optimol, but like the Folate - I suspect that it might have decreased in the healing process by having the B12 injections ?

My B12 Complex contains 400iug Folate - but as you suggest, I can get some seperate Folate Can you recommend a good make to order please.

I have not been diagnosed with Hashi's - and use very little Dairy except Cheese and Greek Yoghurt. I use Almond Milk, and avoid Soya and Caffeine.

My Ferritin levels have been high since August 2021 and were 715 in January (Medichecks)

But since starting the B12 injections - they reduced to 614 in the first four weeks of EOD. - along with the TSats which had reduced from 59% to 45% at the same time.

So I am wondering if the inflammation causing the ferritin levels to be raised was caused by the B12 Deficiency, and is now decreasing with the B12 Injections ??

Ferritin had been requested again on 4/5 BT's along with Iron Studies - but they do not seem to have been done so will check again after the Bank holiday.

What % would be the most optimol for my T4 to be please.-

I have had gut problems but these had been so much better since being on Thyroxine - until I started the Thyroid Symptoms again more recently.

Thank you again for all your time and advice.

Lemondrizz

[GlowCoach Administrator in reply to Lemondrizz1]

Jarrows is a good brand for folate. I buy separate 400mcgs myself and sometimes but a cheaper one which seems to work fine. I currently have some by Pure Encapsulations & also Swiss Bioenergetics.

It may well be that now you have more B12 its using up your folate stock so do add that in.

What was your latest CRP from Medichecks? That would tell you about your inflammation level.

There are other causes of a high ferritin.

[Lemondrizz1 in reply to GlowCoach]

Thank you I will check out the Folate you recommend.

Medichecks CRP

Inflammation

Inflammation occurs when your defence system is activated to rid your body of foreign invaders or irritants and to protect against tissue damage. Typical signs of inflammation include heat, redness, swelling and pain. Inflammation can be acute or chronic. Acute inflammation is often caused by infection or injury, and it flares up and disappears within days. Chronic inflammation is caused by longer-term conditions such as arthritis, inflammatory bowel disease or asthma. Inflammation causes levels of certain proteins in the blood to rise and these can be measured to assess the extent of inflammation as well as in some instances the cause.

Read Less

CRP HS

10 Jan 2023

0.34 mg/L

0 - 5 R

I have had almost two years of trying to find out why I have raised Ferritin levels - both GP's and Consultantants - but all have drawn a blank ??

I have also been tested for Haomochromatosis - but was negative but now also waiting for a possible other Gene test - although unlikely now with levels decreasing ?

Like everyone else - just wanting to feel well again.

Although hopefully now going in the right direction ??

Many thanks Jaydee

Lemondrizz

[SlowDragon Administrator in reply to Lemondrizz1]

Re Ferritin

How old are you

If post menopause higher ferritin is common

healthunlocked.com/thyroidu...

We have received further information the lab about ferritin reference ranges. They confirm that they are sex dependent up to the age of 60, then beyond the age of 60 the reference range is the same for both sexes: 

Males 16-60: 30-400 ug/L

Female's: 16-60: 30-150

Both >60: 30-650 

The lower limit of 30 ug/L is in accordance with the updated NICE guidance and the upper limits are in accordance with guidance from the Association of Clinical Biochemists. ‘

[Lemondrizz1 in reply to SlowDragon]

Thank you Slow Dragon - really helpful.

Yes I am very senior, so that is interesting that M&F is then the same and now within range !

Lemondrizz

[Lemondrizz1 in reply to GlowCoach]

Good Afternoon Jaydee - I have just returned from my GP appointment regarding my last Thyroid BT which I sent you last week - when you advised me to request a trial of an extra 12.5mcg Levo - (making a total of 112.5) ? I went prepared for this and was surprised that because of my symptoms he was willing to increase my Levo by a further 25mcg to 125mcg - he suggested that according to my test results it was not necessary - but as he was listening to me and my symptoms he felt it worth trying. I did not confess that having been in touch with you that I had already started to take 112.5 - and so my question now is please - should I continue with 112.5mcg or now start taking 125mcg -

Because my Folate level had dropped since being on the B12 injections , as you also suggested I have started on Folate (L-Methylfolate ) 400ug -1 per day - I am also taking a daily B Complex which also contain 400ug Folate - so am I safe to continue with both of these please in order to increase my Folate levels.

I will be grateful for any further advice you can give me to help to get me back in balance and feel well again.

Very many thanks

Lemondrizz

[GlowCoach Administrator in reply to Lemondrizz1]

Up to you if you want to try the 25mcgs. Looking at FT4 you would likely have room for 25mcgs but you could always do 12.5mcgs now and do bloods in 6-8 weeks then add the next 12.5mcgs after that.

You do need that extra bit of folate so add the 400mcgs methylfolate.

You could also try fully dairy free, have a look at the non dairy cheese alternatives which arent bad at all.

You have a great GP!

[Lemondrizz1 in reply to GlowCoach]

Thank you so much Jaydee for sharing your knowledge and giving me this advice - much appreciated.

Following your reply - as my GP is expecting me to do this, I have decided to up my Levo to 125mcg per day and will check with BTs in 8weeks time - in the hope that I will be feeling better by then. Are you able to let me know what symptoms I might experience if this dose is too high for me please and if this appears to be too much - I guess that I will be able to revert to 112.5mcg ?

I am still continuing to SI B12 EOD suplied by and under my GP's guidance - although I still have neurological symptoms - Fizzy Head - Parathesia in Feet and Legs - Feeling Disorientated/drunk and difficulty in walking - on the plus side I am no longer getting Palpitations, Waking earlier and easier, no longer short of breath, and no more burning pains in my feet, so I do feel that I am beginning to experience some improvements and do realise that I have had a lot of these symptoms for at least eighteen months.

Yes I realise how lucky I am with my GP - I sometimes think that he unsure what to do or how to treat my complex medical conditions - but he is always willing to listen to me, and work with me to make adjustments as we think fit.

It has not always been plain sailing during my medical rollorcoaster but having read so many heartbreaking stories on your forum, many that I identify with. Although I am at present still feeling rubbish - with your help and others on the forum, along with my GP - I am trying to stay positive and hoping for better times.

Thank you again

Lemondrizz

[GlowCoach Administrator in reply to Lemondrizz1]

Its highly unlikely that an extra 25mcgs will send you over. In fact if you were to feel over replaced I would also suspect low FT3 as we haven't seen your FT3 result lately. perhaps look out for changes in sleep and heart rate, feeling jittery.

The B12 injections will take quite some months to be fully effective so you will need patience.

[pffft2017]

Just a word of caution re; Levothyroxine. Don't up your dose too quickly or without supervision as a mate of mine ended up having a heart attack and he was only in his 20s. Agreed he was morbidly obese, but that was down to the thyroid.

Men suffer hypothyroidism too.

[FancyPants54 in reply to pffft2017]

Most of us here have had to go without supervision as the supervision is worse than us having to learn about it ourselves. Your mate could have had a heart attack for any reason or he may have suddenly taken a lot more levo. this person has had a 12.5mcg dose increase suggested. That's not going to give anyone a heart attack given her current numbers.

[purejoynow]

before supplementing with b vitamins, check to see if you have a mutation of the MTHFR gene. If you have the one called c677t, you may need methylated b vitamins to be able to properly use them and the synthetic forms will be of no use to your body and possibly even cause problems. Much more information on the internet if you care to learn about this. It is estimated that between 40-60 percent of Hispanic and Caucasian people have this mutation but we almost never speak of it.

[Lemondrizz1 in reply to purejoynow]

Thank you purejoynow for getting in touch.