Advice please lovely people

[Mazzer]

So .. following on from my previous posts I had levo reduced from 150 to 125 in Feb.

I have waited 7 weeks and retested. All usual protocols. Early morning pre food and drink, no B vitamins for 2 weeks prior.

I’m due to see an NHS endo shortly and suspect he will say optimal. I have plans to go privately if this is the outcome.

My T3 levels don’t seem to alter greatly whatever dose of levo I take. I am waiting on the result of a D102 test which I ll know on Tuesday.

Looks like iron is low.

Vit D gradually crawling up.

I’m still feeling rubbish. I’m exhausted piling on weight, joints and muscle pain, tingling and now my nails have got lines on them.

Thank you

[pennyannie]

Hey there Mazzer :

OK - the acceptable conversion ratio when on T4 - Levothyroxine only is 1 / 3.50 - 4.50 T3/T4 with most people preferring to come in at around 4 or under.

So to find your conversion ratio you divide your T3 into your T4 and I get 4.6 so just going out from centre and showing poor conversion.

Your T4 is coming in at around 85% and your T3 at around 35% through the ranges and we generally feel better when both these vital hormones are in the upper quadrant of the ranges.

There is room for further dose increase in T4 but I doubt it will close this differential enough.

No thyroid hormone replacement works well unless vitamins and minerals are maintained at optimal levels and I now aim for a ferritin of around 100 : Vitamin D at 100 : folate half way - I aim for 20 and active B12 at around 70 + with serum B12 at around 500 + :

Are you supplementing B12 as it appears over range ?

The logical solution, once your core strength is strong and solid is to add a little T3 and possible drop a little T4 :

T4 is a storage hormone and you need to be able to convert this into T3 the active hormone that the body runs on, which I read is about 4 times more powerful than T4 with the average person needing to utilise around 50 T3 daily just to function.

A fully functioning working thyroid would be supporting you daily with trace elements of T1 and T2 plus calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

As you will see from the above by not replacing your own thyroids production of T3 you have, in effect, been down regulated by some 20% of your overall well being.

Some people can get by on T4 only, some people find T4 doesn't work as well as it once did, and some people simply need both T3 and t4 medicated independently to restore balance and at a high enough level to be acceptable to the patient.

I just think it makes common sense to replace like with like and having failed to get anything other than T4 through my NHS service I decided to self medicate with all the other thyroid hormone replacement options myself and am now 3 years into taking Natural Desiccated Thyroid.

I did try some synthetetic T3 - Liothyronine with my synthetic T4 - Levothyroxine and that worked as well but think the NDT which is pig thyroid, dried and ground down into tablet referred to as grains suits me better.

The thyroid is a major gland responsible for full body synchronisation including your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

[Mazzer in reply to pennyannie]

PennyAnnie you are very kind to reply so extensively. I took 150mcg of levo and T4 rose to 25 and T3 to 4.9 and TSH 0.19 but I still felt rubbish and the GP panicked about the T4. ( no clue)! I had no choice in the reduction so have insisted on seeing an Endo. I am supplementing Vid D 4000Iu, selenium magnesium. I did take B12 but stopped a while ago. I need to get ferritin up.

Thank you for your help.

[pennyannie in reply to Mazzer]

Hey there :

It is low T3 that causes all the rubbish symptoms :

As I said even with a high T4 your conversion is compromised and the T3 will not rise enough to make any difference.

Since you have lost your thyroid you have " lost around 10 mcg of naturally produced T3 " which needs replacing for you to be able to restore your health and wellness.

Many CCG areas throughout the country are not supporting new prescriptions for T3 - Liothyronine.

Thyroid Uk website hold a list of recommended endo's and specialists NHS and private who are known to be sympathetic, and understanding of thyroid and it might be in your best interests to email on Monday and ask for this list to be emailed to you.

[Mazzer in reply to pennyannie]

Hi PennyAnnie

Thank you. I have the list of private Endos and have decided on who I’ll initially contact. I know. T3 prescribing is political. I have seen a letter from the endocrinologist at the hospital to my GP surgery saying they won’t see me unless the Surgery agree to the cost of any meds.. I made a Complaint. I met with the senior partner at the surgery and got her to commit to paper that any treatment recommended by the hospital would continue to be paid for at surgery level. I know that the CCG in my area does allow T3 but this may change.

It’s a total scandal isn’t it. I know there have been parliamentary questions but it’s not got far.

Thank you

[pennyannie in reply to Mazzer]

Yes, I think the House of Lords currently have the petition and it's under a cushion on the third row back collecting dust.

It is a disgrace - I just clap for myself and Thyroid uk - as without this forum I don't know where I would be now - feel so let down, disillusioned and disappointed in the system.

Take care ;