Help / advise needed please read

[crystalcat10]

I posted a year ago ,please read those posts to see where i was at .

I had appointment at hospital with endocrinologist , what a disaster .

i first spoke to a trainee GP who seemed a bit interested , took history etc , then in comes the consutant with a whole bunch of people , 6 i think . of course i felt intimidated .

she proceeds to dismiss any treatment other than levothyroxine , doesn't test T4 or T3 , has many patients taking as much as 500mcg as long as the TSH is in the range don't matter where that's ok .

She herself was on levo and it works fine .

she did bloods dont know what , and told me to take 275mcg gave forms for further bloods (TSH T3 T4 ) to be done in December with a follow up tetephone appt to follow December/January .

My husband thought she was nice and made sense 😡 The bruises have healed now .

My instinct was to run and run fast .

however i did as requested increased to 275 had the blood test and awaited the follow up . nothing came , rang the hospital , told to carry on waiting they were busy or ring GP .

called GP spoke to reception and a nurse told the hospital didn't

share results and as i was under them not their problem .

so I'm feeling really bad so just left it think an appointment would materalize.

forward to July and annual review comes from GP obviously i went .

TSH 40.4 (0.35 - 5.5 )n

T4 12 (9.0 - 23.00 )

On 275mcg empty stomach etc etc .

worred call from GP , he actually sounded somewhat clued up ( he's one of the older ones )

he orders full bloods to be done and arranges a referral to another hopital .

bloods come back , nothing spectacular other than thyoid .

Ferritin 32.1 (30 - 400 )

serum B12 550 (190 - 910 )

cortisol 590 (119 - 618 )

Vitamin D 72.6 ( 50 - 99999 )

Neutrophils 1.1 (1.7 - 7.5 )

thyroid TSH 33.8 ( 0.35 - 5.5 )

T4 11 ( 9.0 - 5.5 )

T3 2.7 (3.5 -6.5 )

Dr managed to track down the December result after 8 weeks on 275 up from 250

TSH 20

T4 bottom of range ( didnt say what )

T3 under range

have received an appointment for end of November for original Endo ( i will cancel this )

G P thinks Lab automatically notified them of crazy result so the panicked and sent appt .

i have appt next week at new hospital next week .

question is where do i go from here .

problem is I'm so flat and out of it i don't really care .

i have agreed with GP to up does to 300 Mcg

I'm not happy taking such a massive amount .

i live in the North East so those who know ,know .

sorry this has rambled .

[greygoose]

It's not the size of the dose that matters, it's how much you absorb. And you aren't absorbing much at all!

Are you still constipated? Because that doesn't help. But, of course, it's a vicious circle: you constipated because you're hypo and you're hypo because you're constipated!

I've just read your post from a year ago, where the constipation is talked about at great length, but I noticed one or two points were missing:

- stomach acid: one of the main causes of constipation is low stomach acid. Most hypos have low stomach acid because they have low T3 (which takes us into another vicious circle!). But you can raise stomach acid independantly of T3 levels.

First of all, check whether you have low stomach acid by doing the burp test:

loveleafco.com/baking-soda-...

- salt: I know that for some people salt is a dirty word, but the body does honestly need adequate salt intake. And low salt intake is another reason for low stomach acid, which leasds to constipation, which leads to poor absorption... Do make sure you get enough salt.

- water: obviously you know that the body needs water, but do you know how much water your body needs? Are you drinking enough? One of the causes of constipation is lack of water because in desperation, the body will absorb all the water from your poo, leaving it lying there like concrete, very difficult to pass.

It was already suggested that you take large doses of vit C for the constipation, but if you take vit C with your levo, it might just increase your absorption of levo. Worth a try.

[crystalcat10 in reply to greygoose]

constipation is an ongoing issue but not as bad as i has been , obviously like yo u say its a chicken and egg thing . i make sure i stay hydrated i find on an evening i can get very thirsty and will drink maybe i litre on top of what i drink throughout the day , which includes an electrolyte drink which contains1.39g salt ,sodium 0.55,pottasium 5mg,magnesium46mg

selenium1.4ug.

i will try vitamin c and will reintroduce vit D3 K2.

diabetes test came back all good .

i really don't think its a simple fix .and the NHS dosnt do outside the box .

[greygoose in reply to crystalcat10]

They don't even do much inside the box!

[crystalcat10 in reply to greygoose]

i get the feeling they want us all in a wooden one 💀

[greygoose in reply to crystalcat10]

Nah, they just don't care if we live or die. But I think the whole problem is that they don't believe this will kill us, they think we're just making a fuss about nothing and if they ignore us we'll just go away and get on with it. They just don't know enough about thyroid to envisage the consequences.

[TiggerMe Ambassador]

I'll flag up that your ferritin is very low and you need to request a full iron panel from your GP to see if you can get on and supplement and also your Vit D needs a boost aiming for 100-150... grassrootshealth.net/projec...

[crystalcat10 in reply to TiggerMe]

red blood count 4.36 (3.8 - 5.9 )

Haematocrit 0.424 (0.37 - 0.47 )

mean cell volume 92.2 (80 - 100 )

mean cell haemoglobin 32.3 (27.0 - 32.0)

concentration 333 (320 - 360 )

total white count 2.9 (4.0 - 11 )

[TiggerMe Ambassador in reply to crystalcat10]

These are full blood test results and possibly suggest low folate and an increase in B12 would be a good thing, you are looking for...

Iron panel

[arTistapple]

Deep feelings for you. I am in North East as well. It’s kind of like being in prison - although I have never been in prison. I feel totally restrained somehow and at the total behest of someone who does not really give a jot about me.

It’s a far cry from anything approaching ‘care’ or freedom or respect.

I recently had a long awaited consultation with an endocrinologist. I thought it went well. Discussed a strategy and finally after waiting five weeks, got a letter refusing to treat.

Well I am still in the process of picking myself up.

Apologies if I sound bitter.

[Sparklingsunshine in reply to arTistapple]

And the doctors wonder why patients take matters into their own hands and go private or self treat. I've got zero faith in the NHS to do anything but patch me up in the event of an emergency. I'm sure I'm not alone either.

[arTistapple in reply to Sparklingsunshine]

I am not even sure now of getting patched up in an emergency. Such is the standard of how I have been treated (not treated) by the NHS. I have very low faith.

[crystalcat10 in reply to arTistapple]

i am heading to this appointment with zero expectations

[arTistapple in reply to crystalcat10]

I am going to PM you.

[crystalcat10 in reply to Sparklingsunshine]

to add insult to injury i have a friend recently diagnosed type 1 diabetes and oh boy did she get the NHS golden ticket , outstanding almost over the top care and thousand of pounds worth off high tech equipment thrown at her .

[Slowrunner1208]

no real advice, as a fellow north easterner I just wanted to say I hear you and empathise.