Help with results

[Eladee]

Hi All

After much persuasion my gp raised my Levothyroxine dose from 75mcg daily to 100mcg one day 75mcg the next.

My TSH has tumbled, T4 near top of scale and T3 crept up a little bit.

I still feel under medicated but gp doesn’t want to increase dose so I’m thinking of adding half a grain of privately sourced NDT (35mcgT4 8.31 mcgT3 per grain) and decreasing my Levothyroxine accordingly. To try to increase T3.

Previous blood results whilst on 75mcg daily :

TSH 1.96. (0.27-4.20)

T4 total. 107.0. (66-181)

Free T4 17.70 (12.0-22.0)

Free T3 3.98 (3.1-6.8)

I am supplementing B12, B complex and vitamin D

I had subtotal thyroidectomy and subsequent RAI for Graves, have always only been on Levothyroxine.

Any advice or comments of what I can do to feel better

Thanks in advance

[magsyh]

It only looks to me like your not converting well. Id try selenium suppliment first. I dont know anything about Graves so cant really comment further

[Eladee in reply to magsyh]

Ok thanks that might help

[SeasideSusie Remembering]

Eladee

You could go with less Levo plus NDT. Or you could add synthetic T3, there's more room to find the right combination of Levo/T3 rather than the fixed ratio in NDT.

Your Vit D needs nudging up to 100-150nmol/L (recommended by the Vit D Society and the Vit D Council). How much D3 do you take? Do you take magnesium and Vit K2-MK7, important cofactors of D3? We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

[Eladee]

Hi seaside susie

Thanks for your reply

I’ve been taking vitamin D3 +k2 (3000iu d3 100ug k2) every other day but left off all supplements for 5 days prior to blood test. Perhaps now I should take it daily, I haven’t got magnesium supplement at present.

Do you think I could start with half a grain NDT which I already have got? How much to decrease Levo by?

Otherwise can you advise dosage / pm details of where to get synthetic T3 without prescription my gp already said they wouldn’t prescribe T3 😓

Thanks

[SlowDragon Administrator]

Saw your newer post this morning

As you had Graves, have you tried strictly gluten free diet? Many find it helps even after RAI

Ideally ask GP for coeliac blood test first or buy one online for under £20

chriskresser.com/the-gluten...

amymyersmd.com/2017/02/3-im...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

Suggest you email Dionne at Thyroid Uk for list of recommended thyroid specialists

Your next step is likely to try adding small dose of T3

An NHS prescription (or private prescription) is best option

please email Dionne at

[e-mail]

Professor Toft recent article saying, T3 may be necessary for many

rcpe.ac.uk/sites/default/fi...

british-thyroid-association...

sps.nhs.uk/wp-content/uploa...

Roughly where in the UK are you?

[Eladee in reply to SlowDragon]

Hi SlowDragon

Thanks for your reply

I have been tested for coeliac disease helicobacter pylori and also lactose intolerance they were all negative.

I tried gluten free diet a few years back but didn’t find much improvement. I could try again see how it goes.

My gp has said he can’t prescribe T3 and doesn’t want to increase the Levo at this point as my tsh is quite low but he said he would refer me to an endocrinologist if I wanted him to, however the last 2 I’ve seen said they wouldn’t prescribe T3 as I was well medicated on the Levo and dose was appropriate that was when I was taking 75mcg daily!

I’ve had to battle to get increase to 100/75 alternate days.

I was thinking of adding a small amount of T3 privately sourced and maybe dropping the Levo to 75mcg daily.

I’m in the West Midlands just a few miles from Birmingham.

Thanks for your help it’s greatly appreciated

[pennyannie]

Hello Eladee

Just as a matter of interest, do you know of this book by Elaine Moore ? -

Graves Disease - A Practical Guide ? This lady has the disease and went through RAI treatment. She is American and has also set up a Foundation and a very comprehensive website, offering help to all people living with Graves Disease.

The other book I found helpful is by another American lady who again has Graves and went through RAI treatment, Barbara S Lougheed - Tired Thyroid - from hyper to hypo to healing - debunking, amongst other things, the management of Graves on just a TSH blood test result :

My third book/bible is by a doctor who has hypothyroidism Dr Barry Durrant Peatfield -

Your Thyroid and How to Keep It Healthy - a relatively easy read, and so relevant to us all.

Just as a point of interest a fully functioning working thyroid would be drip feeding you approximately 100 T4 and 10 T3 daily.

It is a massive learning curve, there is much to read and reread, but I think it so necessary to be able to ask questions and take back some control when the system seems to be letting you down.

I too am with Graves Disease and had radio active iodine treatment in 2005. I have been ill, but found no help within my primary care or CCG having been refused a trial of T3. I am tired of being in and out of ranges that are not even relevant to Graves patients and have been self medicating with NDT these past five months, and am getting my life back.

[Eladee in reply to pennyannie]

Hello Pennyannie

Thanks for your reply I have heard of the books but haven’t got got them, I’ll look into getting them.

It is a battle with the drs, I’ve got some NDT (thiroyd) but haven’t started just yet thought i’d see what advice I get regarding self sourced T3 as I thought it may be easier to control.

I’m glad you feel better with the NDT. How long did it take you to start feeling better? I guess it’s trial and error but when you don’t feel well it’s all a nightmare. 😣

[pennyannie in reply to Eladee]

I started reading up about three years ago, my only known diagnosis being low ferritin.

I found this site, and started reading up, and slowly I found my way.

I requested a referral to endocrinology, the only one I've had since thyroid ablation in 2005, a full thyroid blood test, and an increase back up to 125 mcg Levothyroxine daily. I had to pay my doctor to do the T3 and T4 and she refused to " up my dose " until she saw the results of the T3 - though she also denied she needed to do a T3 test to know I was ok, and good to go, as my TSH was in range.

On the higher dose my T3 came up substantially, and I felt my brain coming back.

My CCG refused a trial of T3 as now my TSH was suppressed, January 2018.

I wrote three times that year, copied in my doctor, requesting I be reconsidered, as the endo had said at appointment, that she would " pick me up again " in six months time,

but instead she discharged me back to primary care.

I had ordered up some T3 and NDT privately as my plan B. and thought I owed it to myself to try both before committing to one long term.

Having received no answers to my letters of March May and July 2018, the penny dropped in about August last year and I decided I'd had enough stress waiting for answers from totally unprofessional people who by then I had no respect for anyway.

I was optimum in my vitamins and minerals and started first with a trial of T3.

I found immediate mental relief, but had difficulty on maintaining brand and a different brand didn't suit me, giving me a " spaced out feeling " :

I thought I would try the NDT - if one is to read the " blurb " it contains all the known hormones that your thyroid produces viz: T1, T2, T3, T4, and calcitonin, and it was the treatment option prior to the introduction of Levothyroxine, blood tests and ranges.

I knew it was the right hormone replacement for me very soon into my trial.

I've written on here somewhere, that for me, T3 felt like wearing stilettos, one size too small whilst NDT feels like I'm wearing my slippers.

I don't know if, or how that makes any sense, but that is how it is for me.

I shall stay on NDT, and would like to have this on my medical records and be prescribed it on the National Health Service.

I need to choose my battles and am not " well enough yet " to take on my doctor nor the establishment, and am staying away, and staying alive.

[Eladee in reply to pennyannie]

It does make sense, the annoying thing is that we trust what the professionals say and end up feeling half dead and then self medicating to feel better. Are you completely on NDT or adding it to Levothyroxine?

I’ve been reading a lot of posts on here and there’s such a lot of good advice, coupled with the ability to get private blood tests without having to do battle with the gp to try and get your T3 tested makes things easier

I had thought I could start with half a grain of NDT and decrease Levo by 25mcg , then I thought I’d ask about sourcing synthetic T3 to try and decide which way to go.

I like your analogy of stilettos and slippers and feel I may be swaying towards trying out the NDT I’ve already got and see how I get on. Like you said it has got the other T’s and calcitonin which will be of benefit as I have no functioning thyroid gland.

Thanks for your help😊

[pennyannie]

I'm currently on 1 + 1/2 Thyroid S - taking it all at 4.00 in the morning and feel pretty good,

and that is how NDT works as you treat to symptoms and not to blood tests.

I had a blood test last week just for my own reference, my T3 came in above range, my immediate thought was to cut back a bit - but then thought I've no symptoms of feeling over medicated, and, had I waited a bit longer between my meds and the blood draw I'd have been " in the range " of so called acceptability - silly me really, just need a bit more confidence, which I'm sure will come as I start to trust myself more.

I have tried NDT in the afternoon as well, but felt no different.

I have taken more than the above dose but felt uncomfortable, so dropped back.

I went from Levothyroxine 125 daily straight over to NDT only

I started with a quarter tablet of NDT and just followed the instructions.

Yes, a pill cuter would be a very good idea, if you haven't one.

I don't think it's sensible initially to mix the two, though have read that to " fine tune "

some people add T3 or T4 to their NDT.

I'm just getting to know what makes sense for me, we are all different and need to learn

what works best for each one of us.

The thought of dosing to reduce symptoms, makes more sense than dosing to fit into some range. It's all about how you feel, and not what numbers are on the score card.

As I'm self medicating I think NDT will work out cheaper than T3, plus the fact I don't need Levothyroxine, so can " disappear for the time being " whilst I sort myself out.

[Eladee in reply to pennyannie]

Thanks for all your advice I’ve got a lot to go on. I’m glad the NDT is working for you and you’re feeling better it gives me more confidence, I’ve got the pill cutter ready 😊