Fed up and frustrated ! Hypo

[bevlah]

I’ve had an spot with endo today after waiting 2 months . I have been ill now since 5 th September with 5 weeks off work . Since 5th September I’ve had my Levo increased twice then decreased after dragging myself back to gp on 8th October crying because I was so unwell . I insisted on vitamins being tested and anti bodies as although I’ve been diagnosed since 2011 anti bodie have never been tested. My Tsh t4 and t3 were also retested less than a month after med increase !

Results ;

Sept tsh 15.7 range 0.27-4.2

T4 14 range 12-22.0

T3 2.7 range 3.1-6.8

Ferritin 37 range 13-150

Levo increased from 125/150 alternate days to 150 daily

October results

Tpo 62 range 0-5.61 other antibodies not tested despite request

Tsh 0.052 ! What how ? Ranges as above

T4 18.6

T3 3.7

Vit d 77

Folate 8.2 range 3.1 -20.5

B12 226 range 187-883 ( same as a year ago)

So gp spoke to head endo and t4 was reduced to 100 trial t3 10 much daily advised to take multi vitamin with phosphate in it as inorganic phosphate is low ? And prescribed iron tablets as ferritin levels low . I bought sublingual b12 1000 . Asked for b12 injections advised to discuss with endo

So just started to feel better saw endo today basically asked me what he thought he could do? I pointed out that b12 ferritin and folate levees were all low and should be in upper 25% of range . He nodded said I needed to ask gp about b12 injections I stated that all I wanted was to feel as well as I possibly can . He asked if I was drinking over the recommended limits 🤣

I also pointed out that as far as I was aware low vit/ min levels were also characteristic of hypo . I said there was nothing he coykd do for me ? But he was happy for me to seek a second opinion and had referred me to a haemotologist low phosphate levels and abnormal mch and mcv? No mention of hashis or consider dietary changes 😬

Just feel totally disillusioned and fed up on the positive I am feeling better just fatigued . He will not change thyroid meds until retested in about 3 weeks which I fair enough . I have found an article on this forum about long term effects of low b12 . I’m printing it off and back to gp,

Sorry ranting but so fed up any advice is very welcome

[Aurealis]

Well done to you for sticking up for yourself and obtaining some T3. It’s good that you’re feeling better, albeit fatigued. Good luck

[Nanaedake]

I think it's very likely low B12 and ferritin are causing problems but changing your dose of levothyroxine up and down by more than 25mcg at a time is also likely to make you feel very unwell. Some people are very sensitive to changes in thyroid hormone.

Your second set of results...if they were mine - I would have left my dose alone and retested in 6 weeks to see what was happening.

In the results below your FT4 and FT3 are in range (I'm presuming these are FT4 and FT3 not total T4 and T3 results?) . Were these results before the addition of T3 or after? If you added T3 before these results then it's no surprise that TSH is low.

Tsh 0.052

T4 18.6 range 12-22.0

T3 3.7 range 3.1-6.8

Your TPO antibodies are elevated so you have Hashimotos thyroiditis which can cause fluctuations in thyroid hormone levels.

Seeing a haematologist is a good idea. I hope you get good advice and help but ask for a second opinion if you are not satisfied.

The Healthunlocked Pernicious anaemia forum will have good advice on B vitamins.

[bevlah in reply to Nanaedake]

Thanks the second test results were before t3 was added I’ve been taking t3 now for about 3 weeks now so waiting to be retested in a few weeks. I’m still not convinced Tsh result in October was accurate ? Endo Just seemed to imply that my result were all indicative of drinking too much . I’ve barely been able to string a sentence together. Just disappointed as appointment was a waste of time . The nurse practitioner at my gp practice is amazing and very proactive and open to listening to research so I’m lucky but every thing takes so much time.

[Nanaedake in reply to bevlah]

I can't imagine what made the Endo comment about alcohol affecting results. What prompted the Endo to make that assertion? Patients get blamed for all sorts of behaviours when medics haven't a clue what's wrong with them. I've never heard of it affecting anyone else's results and I've never seen any research supporting that idea - but I could be wrong.

It's more likely you had a Hashi flare which temporarily reduced your TSH level which is why your FT3 and FT4 were not unduly disturbed. I think you need a new Endo.

[bevlah in reply to Nanaedake]

Thanks I think I need a new one too and might take him up on his offer of a second opinion ! He really had no idea just asking me what do you want me to do ? Oh here’s an idea YOUR JOB - help support to feel well , there is some research which suggests raised mean corpular volume low b12/ folate maybe attributable to alcohol misuse but that’s looking at just those symptoms / test results not the whole picture and history. It took me longer to get to the appointment than the appointment itself . Maybe I will have more luck with haemotologust ? I’ve only got this far as a friends was over from Oz visiting she is a naturopath and straight away prompted me to be more assertive and ask for further tests . I live in Cornwall so don’t hold out much hope of coming across anyone medic who is vagueky interested in making sure I’m as well as I can be . ( except maybe the nurse practitioner ?) didn’t think about hashi flare being responsible for odd Tsh result but wait a minute didn’t know I’d actually got it into two weeks ago 🤦🏼‍♀️ Got to laugh as I’m done crying

[Happysmile]

Read ‘Could it be B12?’ And books by Martyn Hooper at the Pernicious Anaemia society. GP’s know very little about B12 nor do specialists. Your own research is vital. Also, maybe post on the B12 site here and join a good FB page. Good luck.

[bevlah in reply to Happysmile]

Thanks very much I have been on PA forum and have learnt so much from folks on here too.