Post-cancelling of T3 - blood results advice please!

[ElleBee71]

Hi all

warning this is a long post!

I recently signed up to this forum, and its been such a wealth of info! I've been diagnosed hypo since 2008, happily on T3 until last year when my new GP started her mission to remove it. I posted earlier about the lies she used to convince me to "trial" raised levo instead - and is now flatly refusing to re-prescribe T3... so I'm going through the motions to try and eliminate all others issues before I pick this up again... There was a potential offer of a private script from endo, but am not pursuing that yet, until I am convinced nothing else is causing my issues. I have major hypo symptoms returned - cold extremities, feel the cold, slow weight gain of about 6kg over a year (while eating between 1400-1600 cals per day trying to LOSE weight!!), tired (needing 9-10 hours sleep), heavy muscles feeling esp in mornings, weak and achy joints, acne, dry hair, dry skin, cracked heels, horrible "yeasty" breath (according to partner!) (btw GP refuses to test for candida infection), swollen tongue, headaches, tinnitus, bloated, digestive issues... I'm at wits end and just want to feel myself again, after being relatively happy on T4/T3 for years! Although I suspect something was up when I initially saw her last year, as my thyroid bloods were heading south back then...

She's been relatively helpful with getting lots of bloodwork done, and here's the latest, which I'd really appreciate your advice on. Warning - there is a lot here! But as I'm new to all this I thought it best to post all up so you can see.

GP has identified me as deficient in Vit D and Folate - both look extremely low to me. Nothing else identified as a problem, however I am not so sure. She has prescribed supplements of 1000iu D3 per day, and 400mcg folic acid per day. I take 125 levo daily, dropping to 100 on weekend 2 days to "manage" my TSH (it was slow range, down to 0.14 (same ranges) on 125/day)

Three questions -

1. Are the above supplements sufficient to bring me back to optimal levels (presuming over 3 months as that's when my next blood tests ordered)

2. Is there anything else that looks to be a problem with my results? in particular B12 looks low (although in range), transferrin/TIBC iron levels also on low end, and no mention made of serum albumin being below range - is this significant?

3. is there anything else I should have tested that I am missing?

Many thanks! Your knowledge and experience are much appreciated.

Serum TSH mu/L 0.85 (0.27-4.2)

Serum FT4 pmol/L 12.80 (10-23)

Serum FT3 pmol/L 3.40 (3.1-6.8) (this a month older, as she's now refusing to test T3)

IgA g/L 3.37 (0.8-2.8)

tTg iu/mL 0.50 (0-7)

Serum B12 ng/L 351 (200-1000)

Serum Folate ug/L 2.80 (4-18)

Serum Ferritin ug/L 72.00 (9-120)

Serum Transferrin g/L 2.08 (2-3.2)

Serum Iron level umol/L 15.00 (12-28)

Serum TIBC umol/L 52.00 (45-80)

Saturation IBC 29% (15-50%)

Serum vit D nmol/L 35.00 (80-150)

Serum albumin g/L 35.00 (38-50)

serum alkaline phosphate u/L 36.00 (25-115)

corrected serum calcium mmol/L 2.31 (2.2-2.6)

Serum inorganic phosphate mmol/L 1.11 (0.8-1.4)

Serum magnesium mmol/L 0.81 (0.7-1)

Haemoglobin estimation g/L 124 (115-165)

RBC count 10*12/L 4.07 (3.8-5.8)

Packed cell volume L/L 0.36 (0.37-0.47)

MCV fL 88.70 (80-98)

MCH pg 30.50 (27-32)

MCHC g/L 343 (310-350)

RBC disturb width % 12.70 (10-14)

Platelet count 10*9/L 283 (150-400)

Total white cell count 10*9/L 5.60 (4-11)

Neutrophil count 10*9/L 3.20 (2-7.5)

lymphocyte count 10*9/L 1.80 (1-4)

monocyte count 10*9/L 0.50 (0.2-1)

eosinophil count 10*9/L 0.10 (0-0.41)

Basophil count 10*9/L - (0-0.11)

[SeasideSusie Remembering]

ElleBee71 I can't comment on all your results I'm afraid. But to answer your first question

"1. Are the above supplements sufficient to bring me back to optimal levels (presuming over 3 months as that's when my next blood tests ordered)"

1000iu D3 daily is totally inadequate for a Vit D level of 35nmol/L. The recommended level is 100-150 and you've been given less than a maintenance dose. Just don't bother with what your GP has prescribed, buy your own as you'll get a better supplement anyway. I would suggest you start with 10,000iu daily for a couple of weeks then reduce to 5000iu daily. If your GP won't retest then you can get it done through City Assays (an NHS hospital lab in Birmingham who does private Vit D fingerprick blood spot tests for the public for £28) vitamindtest.org.uk/vitamin... . Once you've reached the recommended level reduce to 5000iu alternate days as a maintenance dose.

When taking D3 we also need K2-MK7 and magnesium, it's important co-factors. D3 aids absorption of calcium from food and K2 directs it to bones and teeth where it is needed rather than arteries and soft tissues where it causes problems. D3 and K2 are fat soluble and should be taken with the fattiest meal of the day. Magnesium is calming and is best taken in the evening.

As for some of your other results:

B12 at 351 is too low, it should be at the very top of the range so 900-1000. You can supplement with Solgar or Jarrows sublingual methylcobalamin lozenges 5000mcg daily for a couple of months. Let it dissolve under the tongue to get directly into the bloodstream, don't swallow or chew as stomach acid destroys it. This can be taken without food as it is sublingual.

When taking B12 we need to balance all the B vits by taking a B Complex. Often recommended here is Thorne Basic B or Jarrows B Right which both contain 400mcg methylfolate which is the better form as it is natural. Folic acid is synthetic and not everyone can convert it to folate. B vits should be taken in the morning with food, no later than lunchtime as it can be stimulating. If you get one of these B Complex you could finish the course of folic acid the doctor gave you first then change to the B Complex.

Folate needs to be half way through it's range, so with that range it's a minimum of 11+.

Ferritin should be half way through it's range for thyroid hormone to work properly, with 70 as a minimum, and yours is OK. You could maintain it by eating liver every couple of weeks, or eating other iron rich food. However, the rest of your iron panel is low in range and you should discuss with your GP, I have no knowledge of the significance of this.

The aim of a treated hypo patient is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well. With your results you are not on enough Levo to achieve this, your FT4 and FT3 are both far too low plus you have many symptoms.

Hopefully someone else will come along with comments about your other tests, but in the meantime you can check them out here labtestsonline.org.uk/map/a...

[ElleBee71 in reply to SeasideSusie]

Thank you so much seasidesusie! That's really helpful and thorough info. I really appreciate your help. As I suspected, the GP has done a bit to identify some of my issues, but clearly doesn't know how to actually treat these properly. Even then, she's treating the symptoms (giving supplements) without investigating why I'm so deficient in the first place... frustrating!!

[SeasideSusie Remembering in reply to ElleBee71]

ElleBee71 Sorry, I forgot to say, once you've taken B12 5000mcg daily for a couple of months, reduce to 1000mcg daily as a maintenance dose. There's not much point in re-testing B12 once supplementing as the results will be skewed. We need to be off B12 for 5 months before retesting.

I honestly don't think doctors are interested in investigating the whys and wherefores, they only seem to want to treat the symptoms rather than the cause (and they're pretty bad at that a lot of the time!)

[ElleBee71 in reply to SeasideSusie]

I agree with you - well certainly this NHS. The problem is, I believe in seeking root cause of problem - its the only way you can truly know if you've identified the issue! A shame NHS don't seem to have that view...

[Hidden]

Excellent post from SeasideSusie, am also shocked at you being prescribed 1,000iu of vit d.

[humanbean]

I decided my vitamin D level was a bit low (it wasn't horribly low like yours) and I wanted to increase it a bit. Because I considered my result to be "not too bad" I took only 1000 iU per day for about 6 months then re-tested. My level had actually dropped quite a bit.

[humanbean]

Serum Ferritin ug/L 72.00 (9-120)

Serum Transferrin g/L 2.08 (2-3.2)

Serum Iron level umol/L 15.00 (12-28)

Serum TIBC umol/L 52.00 (45-80)

Saturation IBC 29% (15-50%)

For help on your iron-related results :

rt3-adrenals.org/Iron_test_...

irondisorders.org/Websites/...

[ElleBee71 in reply to humanbean]

thank you for the links humanbean. I will read up. I've read quite a bit on irondisorders (found on another post on this forum) but not rt3-adrenals yet. Learning lots!

[lc1973]

Hi ElleBee71

Just out of interest what dose of levo are you now taking and what were you taking before? Be interested to see what your results were like taking T3 as your FT4 and FT3 are pretty low in range.

[ElleBee71 in reply to lc1973]

Hi. I currently take 125 levo daily, dropping to 100 on weekend 2 days to "manage" my TSH within range (it was below range, down to 0.14 (same ranges) on 125/day). I'm very concerned my T4 is dropping rapidly and I think I am being under-treated. Note - my T4 has never got over 15!

August 2015, the GP raised the levo to 125/day and cut the T3 out (all 7 days)

In April 2016 my bloods were (6 months on stupid "trial"):

TSH: 0.10 (0.30-5.0) FT4: 14.5 (9.0-19.0) and FT3 3.4 (3.3-6.2)

She was concerned my TSH was too low. I was feeling rubbish with all my symptoms deteriorating.

Since diagnosis in 2009 I'd been on combined 100 levo and 10 liothyronine daily.

July 2015 bloods: TSH: 0.02 (0.30-5.0) FT4: 14.7 (9.0-19.0) and FT3 4.4 (3.3-6.2)

She was concerned my TSH was too low. I was concerned all my symptoms were starting to return. Note, I never took my meds on the day of the test (as advised by endo), and in fact laid off T3 for the day prior as well, to avoid T3 spiking the results.

Interestingly, I've just noticed my T3 levels are now lower than they were BEFORE diagnosis - these bloods are before taking any medication:

Nov 2008: TSH: 6.5 (2.0-4.0) FT4: 9.9 (12.0-22.0) and FT3 3.8 (4.0-9.1)

My endo suspected I had a conversion issue and so was willing to trial a T4/T3 therapy (he was private! haha - NHS wouldn't even consider I had a thyroid issue - told me I ate too much and didn't exercise - even though was eating 1200 calories/day and training with a PT in the gym 3 days/week!). It took time, but I managed to lose half the weight I wanted to and felt fairly normal. I'm now going backwards rapidly... and want it to stop!

thanks

[lc1973 in reply to ElleBee71]

So..there was some improvement albeit not optimally with the addition of the T3 looking at your blood test results? Did you feel better with the addition of the T3 I would imagine that you did? I expect you know that T3 only lasts 6 - 8 hours in your system? Therefore not taking any for 2 days before your blood test might not have done you any favours in my opinion. Also exercising depletes T3 and of course taking T3 surpresses TSH.

[ElleBee71 in reply to lc1973]

There was a marked improvement in my symptoms on T3. T3 bloodwork only done as endo/prior GPs wanted to see I was stable on combined, and the underlying T3 wasn't increasing (i.e I still had a conversion issue).

And actually, the 6-8 hours is the effective half life (this can be up to a day), T3 peaks 2-4 hours, but stays in the system up to 1-2 days. This has been confirmed, as sometimes I forgot, and was tested after only a day, and my FT3 came back at around 4.2-4.4.

[lc1973 in reply to ElleBee71]

Interesting ElleBee71.

I'm sure it does stay in the system for more than a day but surely it wont be as potent or effective? I'd be interested to see the confirmation you have as i have recently seen my endo who said 6 - 8 hours for its half life and that i should split my T3 dose to get an even spread across 24 hours rather than peaks and troughs.

Its good that you were seeing an improvement with the addition of liothyronine, i am too, especially now i'm splitting the dose as suggested.

[ElleBee71 in reply to lc1973]

That's what my endo wanted to try - not increasing the dose, but splitting it. Well, the dreaded GP refused to prescribe, even with endo approval. Makes me wonder why she even referred me!

Re the T3 bloods, I really just wanted to exclude all possibility of T3 meds screwing up my bloods, I was prob being overly cautious, but would rather come low in FT3 results than high - especially as my ranges are generally quite low... I knew no risk of going over top of range when taking meds.

Glad you're still on T3. Do all you can to stay on, and refuse any fiddling if your GP suggests. I trusted my GP and took her word I could go back if her tampering didn't work for my symptoms. I regret that trust placed in her every single day, as I now can't get back on it.

[lc1973 in reply to ElleBee71]

Unfortunately although in my area the CCG are still allowing the prescribing of Lio it has to be approved by the Endo and she has said No because she doesnt feel i had a conversion issue and says my doc should not have prescribed it without her permission! I am waiting to see if my doctor is going to withdraw it but they havent made contact yet!! I'm sure its only a matter of time in which case i will probably have to self medicate like many others on here as it will not do me any good to raise my Ft4 over range in order to achieve a reasonable Ft3, in fact i felt worst than ever!! Im sorry you are having such difficulty with your GP going back on her word.

[ElleBee71 in reply to lc1973]

Good luck with keeping your T3 too. My CCG exactly the same - require endo approval. Got that, but they're still refusing! Gah!!! frustrating!

Keep quiet until they force you off it!! And hope they don't!

[serenfach]

Thank you SeasideSusie for the comprehensive reply and to ElleBee71 for raising the issue. I am sure many here will read the information and find it useful.

Following nagging my GP for over a year, I finally had a VitD test, the results of which was way below the minimum. I was given VitD 800, no loading dose, and did not think anything of it. I asked a year later for another test but was told they only ever do it once per patient! The GP also told me I should get outside more (I farm!).

I now realise I may have just as welll have swallowed smarties. The pins and needles in my hands and feet are just as bad, if not worse. Guess I will have to take this on board and buy my own.

Thanks again for all the valuable information.

[ElleBee71 in reply to serenfach]

oh no! My GP has already given me a bloods form for retesting Ferritin, Folate and D3 again in January. That's ridiculous they claim to only do it once!! And also clearly not correct... esp if you've been found deficient. Surely they need to confirm if supplements have corrected the issue!

[ElleBee71]

I'm in London, and struggling with the Hackney and City CCG - I think they are severely stretched financially and think this may be the issue. If anyone has any recommendations of good local GP and/or good NHS endo, please PM me.