Finally - Good News !!

[Lemondrizz1]

After almost two years of being on a rollercoaster, and feeling really ill with many debilitating symptoms - I am now starting to feel better ! - something that I was beginning to think would never happen.

Hanging on by a thread for most of this time - I have been grateful to have been able to come to the forum and all you lovely people for advice, guidance and encouragement along the way - I am not a quitter - but if I was I don't think I would be here now ! I know that I am very fortunate in having a really good GP who listens and allows me to work with him in planning the way forward - hence we are now seeing some progress !!

The extreme fatigue has now lifted and although I get tired it is very different -

After my last Throxine increase on 16/5/23 from 100mcg to 125mcg - I began to feel an improvement after three weeks of the increase on 16/5/23

I am enclosing my latest Thyroid BT and would be grateful for your thoughts on these - a lot of my thyroid symptoms have now been alievieated - but I am still experiencing very dry pricky eyes, and still feel cold - but no longer have blue hands - so would be grateful if you can give me any thoughts on these results and if you think I am now at my optimum level - I think that you will be able to access my previous results from your records.

TSH - 0.01 mlU/L (0.3 - 5.5) T 4 21 pmol/L (10.0 - 22.0 )

Throughout my health journey when all the tests and proceedures had come back negative - the only consistant thing was Raised Ferritin Levels - this had never been explained and no reason could be found. Although they have decreased a little they are still over limit at 584 from 715.

Although I do not have a diagnosis of B12 deficiency - I had a number of B12 symptoms including difficulty walking (feeling drunk) a fizzy head and neurological symptoms - my B12 levels were not seen as low - but my GP decided to try me on B12 Injections - initially EOD at my surgery and still continuing but now SI as I was unable to get through the weekend without them - I had just felt as if I was slowly dying for the past two years. It was suggested by your forum that my GP might consider that I may have Functional B12 Deficiency - he did not know about this but had another patient that had similar symptoms that had benefited from the B12 injections - so was willing to try this treatment for me -

With the B12 injections - a number of symptoms have lifted or eased - but I still have a very sore ankle with some shooting pains in my foot/leg - my head is less fizzy and walking is a little easier -although I still feel disorientated. I do find that I am feeling less well on the interim day of the injections - so have been taking a dose of B12 drops - 5000 ug. Is this helpful do you think ?

I now have to learn to pace myself - as feeling so much better, I have felt like, and been able to do more - having been able to do 30 minute daily walks - I felt up to doing a longer walk with a friend, I coped with this really well and very much enjoyed it - however I have paid the price and have felt really tired ever since - almost a week !! - but not fatigue ! So a difficult lesson learned !!!

With your advice - I have been taking a Folate and B Complex suppliment - I am coming to the end of the 90 days course for each - should I continue with these - or have a break from them now please.

So to conclude - it seems as if it is a combination of the correct dose of Levothyroxine and the B12 Injection treatment that has brought about my improvement, and as long as I am allowed to continue with this treatment - hopefully I will continue to improve.

Sorry to give you such a long epistle !!

Very many thanks

Lemondrizz

[SeasideSusie Remembering]

Lemondrizz1

Good to hear you are making progress

would be grateful if you can give me any thoughts on these results and if you think I am now at my optimum level - I think that you will be able to access my previous results from your records.

TSH - 0.01 mlU/L (0.3 - 5.5) T 4 21 pmol/L (10.0 - 22.0 )

For a full picture it's essential to also have FT3 tested. This isn't done normally with GP tests so consider doing a private test with one of our recommended labs. It can be as little as £32 for just TSH, FT4 and FT3 with a fingerprick test from Monitor My Health and there's a 10% discount code here:

thyroiduk.org/help-and-supp...

FT3 is needed so that you can see how well you convert T4 to T3. Your FT4 is now top of range, but FT3 is the active hormone that every cell in our bodies need and if this is low it will cause symptoms. FT4 and FT3 should be reasonably well balanced when on Levo only but only you can say if you're at your optimum level, you need to find your sweet spot, nobody can tell you that.

I do find that I am feeling less well on the interim day of the injections - so have been taking a dose of B12 drops - 5000 ug. Is this helpful do you think ?

I've no experience of this, but you could ask on the PA forum.

With your advice - I have been taking a Folate and B Complex suppliment - I am coming to the end of the 90 days course for each - should I continue with these - or have a break from them now please.

I would retest, maybe do a thyroid plus vitamin panel with Medichecks as you've used them before. If your folate level is now over half way through it's range you could probably drop off the separate folate supplement and just continue with the B Complex (if you're having B12 in any form you should take a B Complex to help keep all the B vitamins balanced).

[Lemondrizz1 in reply to SeasideSusie]

Thank you Seaside Susie for all your help -

Lemondrizz

[SlowDragon Administrator]

Request GP do full iron panel

If iron and ferritin are still over range they can arrange for you to have pint blood drawn off to bring iron/ferritin down

[Lemondrizz1 in reply to SlowDragon]

Thank you Slow Dragon

I have had a recent iron and ferritin BT - and have asked about venesection - but have been told it would not be appropriate - I have had the gene test for Hemachromitosis but it was negative and am waiting for appointment to check for another possible gene test -

Thankyou

Lemondrizz

[jade_s]

Hi Lemondrizz1, great progress!! And amazing doc!

Some of us have to go more frequent than EOD. I have to inject 2x a day and already for years. Only a handful benefit from oral b12, so you have to just try it and see.

Folate levels are also important. B12 needs sufficient folate to do its job.

Some of us need more even when labs show sufficient levels, but i would try increasing b12 jabs first and keeping folate up.

[Lemondrizz1 in reply to jade_s]

Thank you Jade _s - I would love to be able to SI ED but don't think that my GP will go for that ? I think that both he and I are getting a lot of hassle from the surgery staff - when the PM tried to block his last B12 Prescription - saying that my B12 BT levels were very high and I no longer needed to inject - along with the nurse - who said that no one injected EOD it was a total waste and made it very difficult for me to collect the syringes and needles arranged by the GP - it was all very upsetting - and I was also upset at how they were all trying to undermine him when he has been so supportive to me. Especially as everything they were saying was not even correct - It has been such an uphill struggle to be treated like this when feeling so ill. Having read so many reports on the forum - I know that I am not alone with being put down and treated with no respect - which is why we are very lucky to have the forum to come too - Just when it felt as if I might be turning the corner - I did not want this unpleasant treatment - sorry for the rant and thank you for your help and encourangement.

Lemondrizz

[jade_s in reply to Lemondrizz1]

I'm sorry to hear that, sounds frustrating.

But you do not need GP permission to buy ampoules from Germany, where they are sold over the counter, and SI them on the other days. You don't have to tell them either, your blood tests won't change a bit so there's no way for them to know.

[Hedgeree]

That's great to hear Lemondrizz1,

I'm only really at the start of taking Levothyroxine as I've titrated up to 50mcg and now due to increase. But it's brilliant to hear someone say they feel well and gives me hope for my own future wellness.

Hope you continue to feel improvements! 😊

[am111]

I have hypothyroidism and B12 deficiency. There are some studies that these two go together. Your TSH is too low, implies your thyroxine dose is too high. You can check your FT3 levels too, just to be sure, but standard practice says you need to reduced your dose. Most of your symptoms are due to B12 deficiency. You should take every day same dose for better results. My experience says that above 50mcg/day, the lower the better, hence you can take 1/2 dose per day compared to what you are taking currently, then gradually try to reduce the dose/day. When you reduce, you will feel the symptoms, but once your body adjusts to the lower dose, you will feel better than on the regular higher dose. Also, reduction has to be done VERY VERY slowly, else you will crash. Just saying from my experience with these conditions.

[tattybogle in reply to am111]

am111 a low TSH can sometimes indicate overmedication , but it does not always.

i do agree with you that if reducing levo dose we need to give the body plenty of time to adjust and reduce by very small amounts... a lower dose can often feel undermedicated for the first few weeks , but this often improves once the body has sorted it self out again .

But i think your suggestion that Lemondrizz1 reduces Levo dose from 125 to 75mcg daily , and then tries to reduce even further, is very unwise and is likely to cause problems.

( if that is ideed what you meant to suggest here ? "hence you can take 1/2 dose per day compared to what you are taking currently, then gradually try to reduce the dose/day." )

"standard practice says you need to reduced your dose"

~ standard practice and interpretation of low TSH is often flawed.

See details / explanation / references of how and why in this post : healthunlocked.com/thyroidu.... tsh-is-just-the-opinion-of-your-pituitary-about-your-dose-but-your-pituitarys-opinion-is-a-bit-warped-once-you-take-thyroid-hormone.

There is also very good evidence that a 'low but not totally supressed TSH' in patients on Levothyroxine has no greater risks than TSH in range does .. eg here . TSH 0.04 -0.4 had no greater risks than 0.4 -4 healthunlocked.com/thyroidu... useful-evidence-that-tsh-between-0.04-0.4-has-no-increased-risk-to-patients-on-levothyroxine-updated-new-study-does-show-small-risk

Low TSH when fT4/fT3 are in range is a matter of assessing how we feel about Risk vs Qaulity of Life.

Some patients only feel well with T4 / T3 levels which result in a below range TSH .. and often these T4/T 3 levels are comfortably within the 95% population ref. range

[Lemondrizz1 in reply to tattybogle]

Many thanks tattybogle for your comprehensive reply and explanation-

Lemondrizz

[Lemondrizz1 in reply to am111]

Thank you am111

Lemondrizz

[TiggerMe Ambassador]

Great to hear you are making headway 🤗 they certainly give some sound advice here!

It can be so demoralising that it takes time to right all the wrongs so it is fabulous to hear of improvements, keep up the supplements 😉

[Lemondrizz1 in reply to TiggerMe]

Many thanks Eeyore 100 - it has certainly taken a lot of patience and been very slow, so is great to be starting to feel the improvements which make me feel that I am at last going in the right direction ! I am not sure that I will ever get back to where I was before getting ill but right now am happy to accept this hopefully as a half way house ??

Take care

Lemondrizz