Help Please

[WhitmoreSJ]

I have been given a private prescription for Erfa thyroid for a month and armour for another month. I am worried about the cost, I can’t seem to find any uk prices on line.

Any help greatly appreciated

[SeasideSusie Remembering]

WhitmoreSJ

Contact the pharmacies listed on ThyroidUK's main website here, see what prices they quote you:

thyroiduk.org/if-you-are-hy...

[WhitmoreSJ in reply to SeasideSusie]

Thank you

[pennyannie]

Hello SJWhitmore :

Is your transition to NDT being managed by a medical profesional or are you going this route yourself ?

I ask simply because if once stable on NDT with medical support you may well be able to continue at much less expense buying the NDT independently and monitoring yourself and then the initial costs will be offset by the longer term gain once happy with this choice.

[WhitmoreSJ in reply to pennyannie]

Hi thank you for the reply, yes I am under a private consultant and I am worried about the ongoing costs. I have had a trial of liothyronine for 2 months but am not feeling any better saw the consultant yesterday and she jumped straight in on a change of medication I’m not feeling confident with this change. What you have said has made me feel happier as I don’t want to be reliant on a private endo for ever! Thank you 😊

[pennyannie in reply to WhitmoreSJ]

No worries :

For any thyroid hormone replacement to work well you need optimal ferritin, folate, B12 and vitamin D :

Have you any recent results of these vitamins and minerals and recent T3 and T4 levels to use as bench numbers now on NDT ?

What dose have you been started on and what treatment plan has been proposed ?

I self medicate with NDT and monitored my temperature and pulse and blood pressure daily as I built p my dose slowly, weekly, by 1/4 grains increases.

My blood pressure and pulse remained constant and my temperature over a course of 6-8 weeks rose from 35.4 to 36.6 where it now seems to hover irrespective of the weather or my sometimes cold feet !!

[WhitmoreSJ in reply to pennyannie]

My vitamins were checked about 3 months ago and were all high. I was currently on 100 Levo , consultant reduced my Levo to 75 and said to start on 20 liothyronine split into two after a few weeks I felt very anxious and had major palpitations so decreased to ten a day taken in one dose in the morning.Latest blood test after 6 weeks of this combination was tsh 0.08 (0.27 -4.20) my t4 was 14.5 (9.00 -26) this has concerned me as three months ago was 20.6

Unfortunately t3 was done!! The consultant has now changed me to ndt 1.15 grains daily? She has also said she only needs tsh levels done for next appointment 😳 surely this can’t be right?

[pennyannie in reply to WhitmoreSJ]

In short - no this isn't right and you are right to have concerns.

Can you please give us some actual results T3/T4 - ferritin, folate B12 and vitamin D :

T 3- Liothyronine is said to be about 4 times more powerful than T4 so dropping 25mcg T4 and adding 20 T3 is a vast differential - I'm sorry if you've gone through this and probably experienced horrible symptoms :

Thyroid hormone replacement is a slow job, gentle titrating T3 and T4 levels need to done over a period of weeks so not to send you into outer space - if that's what happened, as I can only imagine how I would have felt, attempting that dose.

If taking any form of T3 how can it be possible not to measure the T3 and trace any progress or movement of T3 ?

Is this a private endo as I think you may need to make a " U " turn ?

[WhitmoreSJ in reply to pennyannie]

Yes it’s a private endo and now she wants me to do a complete change of medication, I have been on Levo for 20 years so this is scary I feel I would rather stick to the t3 and adjust them both accordingly?

[pennyannie in reply to WhitmoreSJ]

Well, she is meant to be working for you :

Ok - so I've enhanced this as good as I can get it and see :

T3 of 4.10 in a range of 2.80- 7.10 with a T4 at 20.80 in a range of 9-26 : is that right ?

So you this puts your T3 at around 30% with your T4 at around 70% through the range;

There does not appear to be any raised antibodies, so presume you are not with any AI thyroid health condition.

You B12 looks a little high as does your ferritin but I can't see anything untoward there except maybe get yor vitamin D up to around 100:

So the accepted conversion ratio when on T4 - Levothyroine 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 simply divide your T3 into your T4 and I'm getting 5.10 showing poor conversion :

This could improve by getting your T4 into the top quadrant of the range by a further dose increase in T4 :

If you have tried this and your T3 doesn't move enough to make a difference you may well feel better with a small increase on T3 or switching to NDT whichever you choose.

Since yout T4 isn't in the top quadrant I don't think it needs reducing and I would just add around 5 mcg T3 with your T4 dose and see how that goes for a week :

Second week add an additional T3 x 5mcg in the afternoon if feeling ok and comfortable after the first weeks one dose a day.

I don't take T3 but understand many people take a small dose twice a day am and pm :

Some take a small dose before going to bed for better sleep, others say that would keep them awake and it seems to be a question of trial and error which is unfortunate as you have already had a bad experience which must have shattered your confidence.

Can you ask this specialist that you would prefer to be going forward with T3 / T4 combo and that you want to go slow - otherwise if noone comes back up on here to offer you further opinion start a new post with your blood test result asking for advise on how to dose with a T3/T4 combo :

[WhitmoreSJ in reply to pennyannie]

Thank you that’s exactly what I was thinking especially as my t4 has dropped down to 14. I suggested exactly that to the endo and she said no I am very over medicated . I was shocked as wasn’t expecting defeat after 2 months of t3 I have this new prescription for ndt but do have enough liothyronine to revert back to 100 Levo and 5 lio and see how I go for a few weeks.

Thank you so much for all your help I have been so worried about what to do. I feel much happier having a plan😄

[pennyannie in reply to WhitmoreSJ]

Good - ok then - well the endo over medcated you - isn't it clever how they manage to turn things around and imply that it is the patients fault.

So I hope you haven't purchased the NDT - it's expensive compared to going the T3/T4 combo route and probably not as diffucult to source as NDT.

There are many on here self medicating with a T3/T4 combo so it won't hurt to start another post asking for something like " How To Switch to a T3/T4 combo " and you may also learn of trusted sources of where to buy T3- Liothyronine.

This specialist deciding she only needs a TSH to guide, monitor and dose you through this transition, and change again the medication choice is a liabilty and you'ld be better served having a cup of tea and checking out your tea leaves left in the bottom of the cup !!!

[AS14 in reply to WhitmoreSJ]

You need all the vitamins recommended to be at a good level but also cortisol and iron. Ferritin is important but so is serum iron, get the full iron panel to check.

Cortisol helps thyroid hormone work better, you need just the right amount at each part of the day.

If on raising any T3 medication you dont improve or have a bad reaction its frequently down to low cortisol.

Also if you have good looking blood tests but you still feel unwell its often down to a cortisol or iron problem. Blood does not show how the hormone is working inside the cell and for that to happen both of these have to be good not just in range.

Saliva cortisol gives the most accurate information.

There are several companies that do them, Regenerus and Genova are often recommended here but I prefer Zrt.

[stiltzski]

Just wondered…How did you get on with Erfa and Armour? I have been on Erfa for about 4 months now and am gradually getting all my hypo symptoms back.

[WhitmoreSJ in reply to stiltzski]

Morning, I didn’t try it in the end, I stayed on Levo and t3 . Sorry can’t be of any help xx

[stiltzski in reply to WhitmoreSJ]

Thanks for letting me know.

[HodorO-H in reply to stiltzski]

I was diagnosed with Hashimotos at the beginning of the year. I’ve been on ERFA for four weeks, starting on one grain and now on 2 grains. Started getting pins and needles in my hands a few days ago and periods have stopped since I started taking it. I felt better for a few days after starting and after each increase. Now I not quite right - like I have permanent PMT! My private Endo is on holiday for a few weeks, and blood tests are at the end of August. I’m not sure if I should reduce the ERFA to stop the pins and needles and maybe start my menstruation?! Positive thing - none of the horrible side effects on ERFA that I had on Levo eg dry mouth, heart palpitations, indigestion etc. What has your experience been and how many grains are you on?

[stiltzski in reply to HodorO-H]

Sorry I am not sure about pins and needles or menstruation (went through menopause years ago). I was on 2.5 grains of Erfa a day for about 4 months. Most of my hypo symptoms gradually came back to some degree and, as a carer, I just could not carry on. I have just switched to Armour and so far things are going ok, but it is early days, although it is more expensive. I wish you good luck.