I have my first actual face to face appointment with my Endo on Tuesday next week since lock down. I had written to him a few months back to say I wasn't feeling particularly great, and I pointed out my just in range T4 and said I think I would benefit with an increase in my Levothyroxine and maybe a slight reduction in my T3 as advised on here. He wrote back to say he was only interested in the TSH 😬and is was at the very low end, and he thinks I would be better removing the T3 as I'm not feeling the benefit (which is most untrue). My post today is ammunition or links where I can find proper facts I can present him with on Tuesday so that he doesn't remove my T3 as IT does work for me, its only since T4 levels dropping have I felt not great. He requested a load of bloods and I will provide the relevant ones below. I know my ferritin and B12 need improving, I would like any link I can print explaining the link between these 2 have in Thyroid health, as he has advised me before the 2 are NOT important in Thyroid treatment 🤬I notice he didn't even request T3 bloods, and again that will be because he goes from TSH alone.
THIS POST IS PRIMARLIY FOR FACTS I CAN HIT MY DIABETES SPECIALIST WITH< PLEASE.
Parathyroid Hormone -10.2 (1.6-7.5) comments, abnormal high (he said this not an issue as calcium not high)
Calcium -2.41 (2.20-2.60)
Haemoglobin -166 (115-165) **abnormal (he made no comment)
Haematocrit -0.486 (0.370-0.470) **abnormal) no comment.
Serum Vitamin B12- 301 (200 -883)
Ferritin- 47 (15-200)
TSH- 0.05 (0.35-5.00)
T4- 10.6 (9.0-21.0)
cannot believe he didn't test T3
TIA 🙂
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Lucky14
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Thanks for your reply, I actually only got the results yesterday from Endos secretary, she advised endo had been on holiday and couldn't release them without his permission. Currently I am only on vitamin D as prescribed by another endo who I had been seeing regarding the Parathyroid (she doesn't see me anymore, she's passed me back to my usual one, god help me). I used to take the B12 spray but admit when it last ran out I didn't order more, probably as I was feeling like crap and not thinking it was benefiting me, the iron tablets I have a love hate relationship with as affect my stomach issues. I was really not great when I was told to stop my medication for 2 weeks, didn't feel normal for months, I never wish to repeat that ever again.
My radiation scans were completed Jan, I then called Endos secretary monthly to be told she was off sick and results still on her desk, I was then told she wasn't dealing with me anymore and I had been passed back to my endo, I called his secretary, who advised she knew nothing about it and passed me back to the other one, to cut a long story boring, I finally got a letter from my Endo in July advising, he had seen my results and everything was fine, no issue with Parathyroid as Calcium levels were not high, so good news basically is what he said. That's when I wrote back to him, advising I wasn't impressed with the wait I had and all the chasing I had to do, and I was still considering sending in a complaint to the NHS, his response was all the bloods he booked me in for and I have about 6 pages of them, minus T3, Folate, Vit D etc, and he booked me in for an appointment to discuss withdrawing my T3 (without even testing it) and told me all Thyroid bloods were ok, and nothing to worry about with Parathyroid.
My head is up my arse at the moment and peri menopause not helping in the slightest, but just want to best ammunition I can get before he tries to rail road me next week. Sorry for long post.
Well I think you are more unlucky then lucky having an endo who only does on TSH readings !
Your T4 is much too low and we have no T3 and it's a total waste of time for you if you are looking to have a serious conversation about your thyroid health.
I don't know about these 3 results marked as abnormal :
Everywhere I researched when my ferritin was flagged as low suggested ferritin needed to be over 70 for any thyroid hormone replacement to work well. I now aim for 100 :
Serum B12 needs to be at least 50% through the range and think it worth aiming for around 500 ++ :
Thank you, and no, I was told I was lucky that he agreed to see me in the 1st place, cos you know there's nothing wrong with me, you couldn't honestly make this up ☹️
I'm so sorry - I'm afraid the stress and anxiety caused by all this would simply exacerbate my health issues further and why I gave up talking to sense to mainstream medical and now self medicate and am much improved staying away.
However likely my issues are not as complicated as others who need support from the NHS -
Sorry but from what you've said on your post I would be running in the opposite direction (if I had the energy!)
They appear to be neither a thyroid nor parathyroid specialist; I'm saying this as I'm currently being checked for parathyroid issues with high PTH and normal calcium. So if possible I would see someone else.
I haven't got previous T3 readings as he not provided them, my concern now is he hasn't bothered testing them since his initial decision to give me T3. I am currently on 100 Levo and 2 x 20 T3 daily. Before he added the T3 I was on 200 Levo. I will be asking him on Tuesday. I think I posted my last results on here, but they were the doctors ones and they don't test T3 as we all know.
You need to test yourself 6-8 weeks after any dose change or brand change in levothyroxine or T3
Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Day before test split T3 into 3 doses with last dose Approx 8-12 hours before test
Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins
List of private testing options and money off codes
Hi, I got private Medi Checks bloods last year which I posted on here. I always get tested first thing in morning and leave the appropriate time between bloods and meds etc, think the Vit D is 1000 and I have been on that since Oct last year. I take 100 levo and 20 lio first thing and then 20 in evening. If he not interested in testing T3 again I will do another private test and get results and post them on here. I downloaded the Calcium Pro app and according to that I'm flagging at the higher end of likely for having hyperparathyroidism, so I will be taking that up with him again. Thank you
"Ferritin and B12 not important in thyroid treatment"
you could try this from the latest consensus statement for uk endo's on starting T3 combination trials ... it insists they rule out other potential causes of symptoms first ...
fig 1. "Suggested investigations include: FBC, U&E, LFT, Calcium, HbA1c, Ferritin, B12, vitamin D, Transglutaminase Abs. Consider 09:00 h cortisol if weight loss or other clinical suspicion of adrenal insufficiency. Sleep apnoea screening with Epworth score, Depression screening with HADS."
Which is at least an acknowledgement that deficiencies in B12/ Ferritin / Vit D may cause symptoms that could easily be mistaken for thyroid hormone problems.... so it might at least push endo into testing them ( although unless they are low enough to be classed as 'low /deficient' , they will still probably ignore them )
i realise it's not exactly what you are looking for .....
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