Blood results help please. Seeing private endo this afternoon.

[dizzy1979]

Hi I had my bloods tested with my nhs endo a couple of weeks ago, and am now have a private endo appointment this afternoon, I have just collected the results from my gp and wonder if you could offer any advice in relation to these before I have my consultation this afternoon. I currently take thyroid s.

[SeasideSusie Remembering]

dizzy1979

I find it very strange that the remarks on your report say "Abnormal" for your over range FT3 yet also say "No Action" but also say "Too much Thyroxine".

Also very strange are the remarks about your C-Reactive Protein. The range is 0-5, your result is shown as <5 so is OK, yet they have put "Abnormal" - it doesn't make sense.

From your previous posts it would appear that you take NDT and your TSH is where one would expect it to be for someone taking NDT, as is your FT4; however, as your FT3 is over range then assuming you took your last dose 8-12 hours before your test it would seem that you are taking a bit too much NDT and might benefit from a slight reduction.

Ferritin looks good.

Folate is on the low side and it's recommended to be at least half way through range so that would be around 8.

As for B12, according to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

pg/ml is the same as ng/L so it would be worth trying to improve your B12 level as well as folate. A good quality, bioavailable B Complex such as Thorne Basic B or Igennus Super B will help there. When taking a B Complex, leave this off for 7 days before any blood test as it contains Biotin, and when the testing procedure also uses Biotin (which most labs do) then it can give false results.

[dizzy1979 in reply to SeasideSusie]

Thank you for your reply. I was taking 2 3/4 of thyroid s previously, but two weeks before this test I dropped to 2 1/2 because my ft3 was 9 and the nhs endo was unhappy. Since reducing my meds I feel rubbish, I am full of spots, falling asleep early, hair falling out, skin dry still not losing weight etc. I have gained 10lb in 3 months without changing my diet. I am at a loss to reduce further or go back up in dosage? I am praying the Private endo will help me this afternoon but won’t hold my breath. I took my meds 12 hours before testing, and didn’t eat or drink before bloods. I do have new vitamin d, iron and b12 to start taking but holding off Incase the endo wants to run her own test.

[SeasideSusie Remembering in reply to dizzy1979]

dizzy1979

As you took your test only 2 weeks after changing your dose, your levels wont have settled. It's always advised here to wait 6-8 weeks after any dose change before testing.

Maybe the fixed ratio of T4 to T3 in NDT isn't right for you and you might need the flexibility of Levo plus T3 so that you can find the right ratio to give you optimal levels of FT4 and FT3 for you as an individual. I am on Levo plus T3 and find that I need my FT4 and FT3 in balance, around 70% through range for both seems to be right for me.

[dizzy1979 in reply to SeasideSusie]

I ageee, this is my fight with the endo, but she wanted me to stop all meds for 1 month, I dropped down to 2 grains from 2 3/4 and by day 3 I felt like I was dying. I am still recovering from that. I raised to 2.5 and felt more human but not great. She also went in to say that they would only put me on t4 only until my levels showed that I needed t3. I argued that I wouldn’t be able to function and without the switch to t3/4 combo I would not go back on t4 after spending 15 years feeling horrendous. Do you get your t3 in the nhs? I am speaking with the private endo today I hope she can help me with t3 or armour.

[SeasideSusie Remembering in reply to dizzy1979]

dizzy979

I agree that too many doctors know too little about hypothyroidism and how to treat it.

I had an endo, many years ago, who reduced my dose of Levo due to suppressed TSH. It made me extremely ill with a very low FT4 and absolute bottom of range FT3, but the endo didn't care, he had achieved a TSH which just about scraped into the bottom of the range. I binned him with my then GP's blessing, the GP increased my Levo back to where it was but I remained ill for 2 years and needed looking after. Never again will I allow a medical professional to treat me like that.

I find that absolutely everything gets blamed on my hypothyroidism and because I have a suppressed TSH this is, of course, the reason for anything I speak to the GP about (in their opinion). I was at the surgery last week, the GP wasn't interested in anything I had to say, didn't examine me, didn't ask questions, just told me to reduce my dose of Levo. I refused 4 times and told him it wasn't my thyroid - he walked out of the room and left me there! I have little faith in doctors now.

My T3 is not prescribed.

[dizzy1979 in reply to SeasideSusie]

Oh my gosh that is just awful. I am so sorry that you are being treated this way. My gp is sympathetic thankfully and fully supports my self sourcing of ndt, however he is unable to prescribe anything other then t4, which is why he sent me To the nhs endo, who is just so unhelpful and not willing or believing in my approach to medicating. Thyroid s is not working for me in the way it once was, so I am looking for an alternative, armour is very expensive and I like the idea of t3, so will see what the private endo says, but I just worry I won’t be given the dose that I need to feel optimal. Self sourcing is the way to go, and if I go down the route of self sourcing t3 I will be on a plane to Greece to stock up.

[SlowDragon Administrator in reply to dizzy1979]

Virtually impossible to get otc in Greece these days.....even assuming there’s a plane going

As you have Hashimoto’s are you on strictly gluten free diet

Vitamin D and folate were low in previous tests too

It could be that there’s not enough T4 in NDT for you

You’re having to drop dose because Ft3 is over range, but each time you reduce dose this also lowers Ft4

Many of us need Good Ft4 and Ft3

[dizzy1979 in reply to SlowDragon]

Oh really, I read that it was easy to get t3 from pharmacies? There goes that back up plan then.I am working on supplementing the Vit d and folate, currently on hold in case I need more bloods with new endo.

I was doing great between feb and August, I lost about 7 lbs and felt fab, but since August I have gained 10lb and feel awful.

I am not on a gluten free diet I do try, but working from home I get easily swayed and opt for the things I shouldn’t. I have been gluten free since Saturday and I am applying myself to follow gluten free from now because I feel so rubbish. I believe my ft4 is good ? So I would need a little less t3? I wonder if reducing by 1/4 of a tablet would fix that? I have been in the same dose all year.

[SlowDragon Administrator in reply to dizzy1979]

Ft4 is only 48% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

On NDT Ft4 is often/usually low

But that doesn’t suit everyone

[dizzy1979 in reply to SlowDragon]

Good news and bad, the endo was basing a lot of her information around tsh, and said that my tsh needs raising, I pointed out that it’s usual for it to be suppressed on ndt, and she was happy to go by my symptoms. She will prescribe what ever I want, t3 or ndt and is requesting a multitude of tests so will see how that goes, but unfortunately I do not think I will be able to sustain for life the cost of private medication costs.

[pennyannie in reply to dizzy1979]

Hello Dizzy

NDT was used successfully for over 100 years prior to blood tests, ranges and guidelines and the medical science.

Big pharma launched Levothyroxine to supersede NDT along with the guidelines, ranges and guidelines mainstream doctors seem obliged to conform to.

With NDT you dose to the relief of symptoms and not a blood test or a computer telling you what to do next.

As you have Hashimoto's this does through a spanner in the works as when your immune system is triggered and attacks your thyroid you will experience " hyper " swings and raised thyroid hormone levels but these fall back down naturally when the " swing swings back ". and read some people sensing a swing coming on drop down their thyroid hormone replacement to try and compensate and off set the severity of the Hashimoto's hyper phase.

With every attack your thyroid goes through it's ability to bounce back with a continued level of enough thyroid hormone will be compromised and you may need to consider increasing your NDT a little.

It is trial and error, just as it was 100 years ago with 1/4 grains up or down and letting this new dose bed in for around 6-8 weeks before you consider changing anything.

100 years ago life was very different and food contained the core strength vitamins and minerals so this is also an area to look at as no thyroid hormone works effectively is ferritin, folate, B12 and vitamin D are not maintained at optimal levels.