Going in circles,please advise on dosing, Endo disagrees.

[Gillybean1]

Hi Everyone,

I am still struggling 8th year now of trying to fine tune meds. I have Hashis and DIO2+. and still feel extremely undermedicated with fatigue/weakmess, chronic gut probs, buckling legs, freezing, tinnitus,poor sleep,etc etc

Heart sink of a new Endo or should I say Gestational Diabetic specialist, who is very kind and charming, but as my new Endo does not believe in NDT nor T3 and wants TSH in NHS range at all costs. I am exhausted, at having to explain, be heard, after intially becoming unwell in 2009 to getting diag and meds only in 2015 I really cant keep fighting to be heard.

So here I am again asking for your help please as to what to do meds wise .I am still feeling awful on this dose, and have ' contemplated' when I last posted to maybe add Levo in or to drop NDT completely (although I find it a smooth med) and just try Levo......

Dec 22. 1 gr NDT, TSH 0.23(0.27-4.2), T3 4.72(3.1-6.8), T4 14.1(12-22)

Oct 22. 1 1/4 gr NDT, TSH 0.01(0.27-4.2), T3 4.47(3.1-6.8), T4 15.7(12-22)

Aug22. 1gr NDT +2.5mcg T3, TSH0.24(0.27-4.2),T3 5.07(3.1-6.8),T4 13.1(12-22)

Mar22 3/4gr NDT, TSH 1.23(0.27-4.2), T3 4.43(3.1-6.8), T4 11.9(12-22)

If I take more NDT which I feel I need, but the TSH continues to go further out of range, is that because of the T3 element?The new Endo is jumping up and down at this and when I said I was thinking of dropping NDT down to a quarter grain and adding 12.5mcg or 25mcg of Levo in instead (previous Endo said keep trying different configurations till you feel improvements but keep a presence of TSH)

The Dec and Oct bloods I was taking Biotin , the Aug and Mar ones I was forwarned and not taking Biotin. All others such as B12, Ferritin, Vit D, Folate and HCL are all very good upper range and over for B12. GF SF DF diet.

I have no quality of life, cant move around, eat properly, do much and its years now.

Any thoughts would be very much appreciated,every best wish , G

[SlowDragon Ambassador]

You’re not on high enough dose

On almost any dose NDT TSH will be extremely low or suppressed

Oct 22. 1 1/4 gr NDT,

TSH 0.01(0.27-4.2),

T3 4.47(3.1-6.8),

T4 15.7(12-22)

This is closest …..but Ft3 still looks too low

Do you split your NDT as 2 doses per day

Day be test always split and take last half approx 8-12 hours before test

Have you ever tried Levothyroxine plus T3

Or adding extra Levels to NDT

Approx how much do you weigh in kilo

[Gillybean1 in reply to SlowDragon]

Hello SlowDragon,

Lovely to hear from you again, thank you.

Yes I do split my doses 8am 3/4 grain and 4pm 1/4 grain and did split more evenly before the blood tests but they would have been 14 - 16hrs after last meds.

I have not tried Levo and T3 yet, its been a nightmare getting hold of a Levo brand (even with it clearly written on the script) in my area easily, that has fewer tricky excipients. I have got Eltroxin now to possibly try, but my T3 script which was prescribed by previous Endo is not now possible with the new Endo. I could argue that I was on T3 for quite awhile before, but have been trying various configurations and not been taking it for 6 months but would like to try it again ...

And yes I was thinking to bring my NDT down to 3/4 grain and add Levo at 25mcg or perhaps Levo at 12.5mcg to see how that goes.

Do you think it preferable to add Levo to NDT in the morning of doesnt it matter if its added in morning or afternoon?

My weight is poor with all these gut probs/pain..I weigh 47.9 kilo (7stone 8lb approx) and i am 64yrs old.

Thank you for being there. Every best wish to you, G.

[GlowCoach Administrator]

Is there a reason you're with an Endo? How do you get your NDT? I have been in this exact situation of buying NDT myself and being supervised by an NHS Endo who wanted TSH within range. It didn't work for me. I have quite the history but have been very unwell for years. I'd recommend breaking free from Endo's or at least finding one that is OK with a suppressed TSH.

[Gillybean1 in reply to GlowCoach]

Hi Jaydee1507,

Thank you for taking the time to reply.Yes these are follow/ up appointments as I am still very unwell and nowhere near sorted. I get my Armour NDT from the USA, but I am not sure I can afford this much longer, its crazy prices. It is probably possible to find a private Endo to prescribe a one off, but long term as im getting older I need the reassurance that the meds I take are clearly stated and agreed on my NHS notes too, and no messing about or sudden changes to this if I should need medical treatment for anything else, just because the person treating for another situation has no knowledge of the Hashi/ DIO2 subject .

As ive just had proven to me. I always said to my previous Endo that its ok at the moment to try different combo's whilst I have your support and approval but what happens if you are not here? he said "that wont happen, and anyway I will make it clear on your notes"..........didnt happen, I had no update he had left, I had no knowledge of a new broom Endo for me.

Every best wish to you Jaydee 1507, G.

[pennyannie]

Hello Gillybean ;

If you need to have a TSH in the range your only chance of achieving this is if you are on T4 monotherapy and then it's not guaranteed and presume you tried this treatment first and found it wasn't working well for you.

Both T3 and NDT options will likely give you a TSH which is low suppressed and this is a given, and a known side effect of taking anything containing T3 :

We are trying to relieve symptoms of hypothyroidism which are generally caused by too a low a level of T3 for the patient :

The TSH was originally introduced as a diagnostic tool to help diagnose someone with hypothyroidism :

It was never intended to be used once on any form of thyroid hormone replacement as then you must be dosed on your Free T3 and Free T4 levels.

Are you buying your own NDT - why do you even need to have these medics to ' butt in " and change things around - surely you can just slowly increase the NDT yourself until you see some improvements.

I don't thnk NDT is even taught in medical school anymore and doctors are trying to fit you into ranges that were designed to be used when taking for Big Pharma's T3 and T4 :

With NDT you dose to the relief of symptoms and not a guideline or range :

[Gillybean1 in reply to pennyannie]

Hi Pennyannie,

Thank you for taking the time to reply. I have never tried T4 only as I was like many here left like a basket case with 'normal' TSH and T4 back in the day, housebound bla bla bla you know the story. 3yrs later I did my own test, Hashi, Dio2 , Full Thyroid panel, irons, D ,!2 , coeliac, HCL, and they were all out of range except TSH and T4. So 2015 I ended up self medicating with NDT whilst waitng 4 mths for a referral after my own blood test results. My previous Endo approved of NDT and encouraged me to try different configurations to find my sweet spot.

I used to ask him, how and why do you want a detectable TSH if I am taking a med that contains T3 which will suppress it.He said " its 'preferable' if your thyroid is still producing some thyroxine ,to not shut it down completely". I said " I will try to achieve what you say but then I may not get well on that regime". Then I just got told he had left suddenly.

I think Pennyannie the reason I do the follw ups with Endo is that im older now, 64yrs and want my NHS notes to be agreed with what I am taking medication wise. Its a reassurance if you can understand what I mean. If I could just get better, prove the point that to have achieved that was by not being under the constraints of TSH 'ranges' devised back in1987 on a 22 year old healthy male, but based on me, all of us on this forum, real time people, at current ages, and female, then that would be reassuring,less fearful.

This new Endo is very pleasant, kind but tunnel vision info. One positive statement though was that she had read recently the data from Italy and France collated she said during the pandemic, where a number of thyroid patients had come forward complaining of return of symptoms, rashes etc folowing a brand change of meds, using different excipients. She said there was a significant number that their blood tests were re run, if their TSH's had risen etc. They put them onto liquid Levo, their negative symptoms receded and their TSH dropped. Data conclusion that excipients and quality of absobtion matters enormously in the case of Levo.As many here knew. She offered me to try liquid Levo.

This Endo was approx 50ish, had 'heard' of NDT but not in favour.

Every best wish to you, and take care, G.

[pennyannie in reply to Gillybean1]

Yes I understand - I am with Graves Disease and post RAI thyroid ablation in 2005 and with no thyroid function the NHS want my TSH in the range.

In order to achieve a TSH in the range I became very unwell - details on my profile page :

What is the point of achieving this TSH goal if one's health suffers ?

Having been refused any treatment options other than T4 monotherapy and at 70 years old I started self medicating with NDT and haven't looked back, am much improved and run my own full blood test yearly more to see where my vitamins and minerals sit than my T3 as I know my cognitive functions are much improved and I don't have symptoms of dementia.

All tablets will have some fillers in them and of course liquid 4 will be " more pure " but I don't see the relevance as to your being kept under medicated by dosing and monitoring to keep a TSH in the range and seen as more important than restoring a patients health and well being.

[Gillybean1 in reply to pennyannie]

Aaarh Pennyannie,

The more I hear the more I despair. I always think and say that until or unless this same problem arises within that consultant or GP's family then nothing will change. I remember having quite a heart felt and passionate conversation with my previous listening Endo back in 2018 when on a morning NHS appointment he agreed that as I was DIO2+ I would probably benefit from a little T3 as there are often conversion/uptake issues with this fault and previous patients had done well, BUT as it was no longer prescribable due to costs his hands were tied. I said "so if I hang around here till 2pm, go upstairs to the top floor private suite and stump up £250 to see you, will you write me a private script for T3 that you know I as your patient need, so that I can at least try to get better than I am, and to not be a future NHS burden? "

He wrote a script there and then. I said this was a crazy situation, he said he was extremely frustrated. I said if you have been here years, are very well respected, why are you not being heard and are powerless. We all just want to be well and free. No reply.

I am sorry you have been through these tough times too Pennyannie but had the resiliance to push on. Thank you, I am inspired by you to keep pushing on, just hope I dont get myself sorted and then go batty !!! And someone comes in and overides my hard work !!

Have a lovely weekend, blue skies out there. Every best wish , G

[pennyannie in reply to Gillybean1]

Yes I totally agree the situation is ridiculous :

When I realised the NHS were not interested in getting me better I couldn't afford to go private - one appointment was enough !!

I'm just a single woman on the state pension and though with over 40 + years of full stamps invested into the system do not seem able to access the necessary thyroid hormone replacement option I require to keep me well and not be a more expensive burden on the State.

I was driven by anger that I could be left so ill with no resolve through the appropriate channels so jumped ship and DI for Myself.

[Gillybean1 in reply to pennyannie]

Hello Pennyannie,

Apologies for slow reply..rough few days. I couldnt agree more, its infuriating to support and pay into a system for decades to provide health care for all ,that we hopefully wouldnt need till we are crumbly ,then when we do , exellenct treatment on many many disorders, but on thyroid issues its very very behind the times or certainly fragmented opinions/info across the country.

I can understand your anger. I too have been muddling along with the 6mth F/u or 12 mths to be more exact after the not suprising pandemic backlog. My DIY from the start was after a gut Prof who in 2012 said to me "what do you mean you just want your life back, this is your life get used to it" !! I kid you not, I fought back the tears, picked up my notes and left.

And another thoroughly negative comment from a GP in 2016 "i think you have to understand that when you have an auto immune disorder you must expect to feel unwell every day of your life from now on" !! Again I picked up my notes and asked to be referred back to Endo.

Its hard when we all on this forum work jolly hard to find solutions and yet we are met with quite alot of negative comments to our positive outlooks.One of the reason I did respect my now retired Endo was that in his despondancy with certain politics, he always supported me when I said ive not given up yet. In fact this made him crack a rare smile. He told me keep tweaking meds, people can find their sweet spot.......so he had clearly seen the 'unconventional regimes' get people well.

Do you ever worry about the future for yourself, doing your own thing? Its not as if writing or medicinal needs in a living will would be legit....at least I dont think so, I must look into this.

In the meantime, take care, as I said you have given me some more uumph to keep going to find that sweet spot, thank you. G