I’m after some recommended reading/prep as I managed to convince NHS GP to provide an open referral for an Endo (despite a “you won’t get much from it, they’ll tell you your numbers are normal”… honestly, it’s exhausting). I’m going to start the process with my private plan but wanted some guidance of things to look out for/prepare that might be useful.
I was diagnosed with Hashimotos 8 years ago (after 3 years of being told it wasn’t autoimmune). Since then, I’ve struggled to find a suitable Levo dose (187.5mcg currently) and had to fight for vitamin prescriptions (as I get recurrent anaemia of all types).
My GP looked at my TSH of the last few years and said I’ve swung between over and under medicated with episodes of higher/lower range “normal” in between with more “over” episodes than “under”. I tried to explain I’ve not felt well for a very long time but be advised it won’t be thyroid related but Chronic Fatigue that I’ll need to manage. I was also told they can’t keep me on a Levo dose if I feel well on it if numbers show I’m over medicated (which I do understand, but it’s like seeing your life through sliding doors and “here’s what it could be”!).
I basically want to get the most out of my likely one shot moment with an Endo and not walk away thinking I didn’t do my best to present myself and my needs that I think need alternative/better clinical management.
Thank you for any advice, can’t thank this community enough.
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LittleSchnau
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Worth checking to see if you have an NHS T3 aware endo in your area...
If you request a referral to a named endo I wouldn't think you'll get much resistance especially if going private, be sure to point out the reason being your low conversion of T4 to fT3.
I'd have thought you will find many private endos don't need a referral from you GP 🤷♀️often it is just the Professors who require this
The open referral was needed as I’m using an employer provided private plan that only allows certain things through without one. I’m guessing I’ll stumble into limitations of the plan after this initial claim as they won’t manage chronic conditions long term but I’ll cross that bridge after the initial consultation.
Do you always get same brand levothyroxine at each prescription
Are you on strictly gluten free and/or dairy free diet
Exactly what vitamin supplements are you taking
Please add most recent vitamin D,folate, B12 and ferritin results
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)
Only do private testing early Monday or Tuesday morning.
I can provide this full info for June 2024 from a medichecks panel (taken on a Monday) but I’ve ordered a repeat fingerpick test and will complete before seeing Endo.
CRP HS: 2.76 (<3)
Ferritin: 85.4 (30 - 169)
Folate: 32.7 (>7)
VB12: 117 (37.5 -188)
Vit D: 76.5 (50-250)
TSH: 3.96 (0.27 - 4.2)
FT4: 19.2 (12 - 22)
FT3: 4.2 (3.1 - 6.8)
TPOAb: >600 (0-34)
TgAb: 2964 (0 - 115)
As far as I’ve seen, been on same Levo for months. Always take my tests as described.
Vitamins context : I’m given 12 weekly B12 injections, I was 3 weeks post injection at time of test. I am prescribed and take 5mg Folic Acid daily. At time of test I was 2 weeks outside taking prescribed loading dose of Vit D and was not further supplementing. I now currently take 25mcg daily. I’ve previously been given Iron prescription but not supplemented for over 18m since.
Recent NHS result (Oct 2024) was TSH 1.67. No other tests performed.
I’m not on a Gluten and/or Dairy free diet (yet, I’d been previously told by a gastro not to so this but feel they were uninformed since being on this forum).
At time of test I was 2 weeks outside taking prescribed loading dose of Vit D and was not further supplementing. I now currently take 25mcg daily. I’ve previously been given Iron prescription but not supplemented for over 18m since.
25mcg vitamin D is only 1000iu daily
How low was vitamin D before loading dose
1000iu unlikely a high enough dose
Are you also taking separate magnesium supplement
Suggest you add in a vitamin B complex 2-3 times a week instead of a separate folate those days
Retest full thyroid and vitamin levels again before consultation
Gluten
Have you had coeliac blood test?
I’d been previously told by a gastro not to
Suggest you consider trialing strictly gluten free diet
Vit D was “insufficient” but not outside the lower end of the range. Exact number id need request as my surgery doesn’t share these results easily. To be honest, my GP did zero follow up and I just started taking the highest OTC option available in Boots (the next dose up was sold out) from beginning of Oct. I’d guessed from the relatively low point in the range considering a loading course had been recently completed that more work was needed here.
Not taking magnesium supp, could add this in with a b complex as suggested.
Been tested for Coeliac multiple times over the years but negative. I’ve reached a point where I should accept this as the next step diet wise as I think it will make a difference as there is family history (cousins, not parents/sibling).
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Update on Endo appointment today
Latest letter from NHS Endo
