Private endo: After seeing a private ENT a... - Thyroid UK

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Private endo

phobicgirl profile image
21 Replies

After seeing a private ENT a private Neurologist and then some £600 lighter (in pocket, no pounds lost from body ) the penny dropped and I’d been over medicated and wrongly diagnosed. I stumbled here and got picked up from the good peeps here. I demanded my GP send me urgently to the Endo, he did but they have no appointments yet!! No surprise there. My purse got £200 lighter at the private endo session. Lovely man I had researched over the years, he said I was doing all the right things now ( courtesy of the peeps here) he is testing my t3 and pituatory gland! He said he will also look at the last 20 years of my diagnosis re thyroid, wow he has some reading there! Reading my blood tests he said my iron was low. Is fereglobin multi with iron a good way to boost my levels?

Wishing all a good afternoon 🤸‍♂️

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SeasideSusie profile image
SeasideSusieRemembering

Is fereglobin multi with iron a good way to boost my levels?

No.

Please refer back to your original post on the forum here: healthunlocked.com/thyroidu...

You posted this result for ferritin:

ferritin: 10 ng/ml [15 - 300]

and I replied:

This is a major problem, you are below range. An iron infusion would be a good idea as this will bring your level up within 24-48 hours whereas tablets will take many months.

Unless you have had an iron infusion or your ferritin level has shot up considerably into the range in the last two weeks then that advice still stands. Your ferritin level is dire. It's not a DIY fix, it needs your GP to sort it or possibly refer you to a haematologist.

I also mentioned your B12 and folate levels. The fact that Feroglobin Multi appears to include iron, B12 and folate wont help. Iron affects the absorption of anything else and should be taken 2 hours away from any other supplements. Treat them individually as suggested.

phobicgirl profile image
phobicgirl in reply to SeasideSusie

Thank you as I am with you on the readings but have had them read by the A&E doctor after being admitted for body and mental fatigue, my GP, my Neurologist and now the Endo, he said iron was a little low, all others said all my levels normal. The hospital who did the results said to see Dr as not normal. I have no idea, did have more blood works at the A&E, they tried and tried to get the canula in and the nurse made a right mess of both my arms and had me in tears, I've now to get more blood done and dreading it quite frankly. I am needle phobic sadly. I have of course mentioned that my results are not right but not from the source of my information. There all adamant I'm normal. I know also that its easier and cheaper to say nothing is wrong ....

SeasideSusie profile image
SeasideSusieRemembering in reply to phobicgirl

They're not taught nutrition, as long as a result is in range that's all they look for, but to say your iron is "a little low" when it's 10 and the range goes up to 300 is, quite frankly, ludicrous and negligent.

phobicgirl profile image
phobicgirl in reply to SeasideSusie

Wow that is low, as you know I am very ignorant to all of this and have been so ill I could not fight my way out of the bed let alone with Doctors. I did ask to see a nutritionist way back last year as I was struggling to eat proper food but apparently I was above BMI range, which I would be because I was on soft high calorie small amount of food, I tried explaining this to the doctor, no interest, no interest in me, no interest what so ever. A new doctor maybe but as he's one of many I'm guessing response will be same, no interest! I take all you say on board and will not forget, while I fight my case as many here do.

As I mention I now have a formal complaint regarding this GP, NHS England are dealing with it but again I have no idea if there will be any results. It has of course resulted in much paperwork, which is so hard when you are so exhausted and can't even remember words at times, let alone string a sentence on the spot!

thank you so much for taking the time to read and reply, I really do appreciate this.

SeasideSusie profile image
SeasideSusieRemembering in reply to phobicgirl

They're not taught nutrition, as long as a result is in range that's all they look for

I did ask to see a nutritionist way back last year as I was struggling to eat proper food

Not nutrition as a nutritionist/dietician would advise about food. Nutrition as in optimal nutrient levels - vitamins and minerals as commented on in your first post on the forum, optimal nutrient levels are required for thyroid hormone to work properly:

Vit D

B12

Folate

Ferritin

ferritin: 10 ng/ml [15 - 300]

Wow that is low

Not only is it low, it's below range, as was pointed out:

ferritin: 10 ng/ml [15 - 300]

This is a major problem, you are below range. An iron infusion would be a good idea as this will bring your level up within 24-48 hours whereas tablets will take many months.

he said iron was a little low

I think you should point out to this doctor that there are reference ranges for a reason. If something is below the reference range then it's deficient, not "a little low". In fact, as you are making a complaint, I would include this in your complaint - the fact that your below range ferritin has been ignored and just dismissed with the remark "it's a little low".

Mishymoo22 profile image
Mishymoo22

i hope you get good results

the endo people at NHS cold not give a hoot about how i felt i sat and cried over my weight and loss of eyebrows. it was like talking to a brick wall. i now have really painful burning feet and they dont seem to have a clue at the doctors

have a nice day everyone

phobicgirl profile image
phobicgirl in reply to Mishymoo22

I to have painful burning feet and they drive me crazy but every time I ever mention this to any Dr they just pretend I never said anything. I'm not expecting much from the NHS but will at least have the same endo as private one. I just fell asleep upright at pc whilst reading these posts so guess fatigue is still an issue ....

SlowDragon profile image
SlowDragonAdministrator in reply to phobicgirl

Burning feet is usually peripheral neuropathy.

Linked to low vitamin D and low B vitamins

All these are extremely common on Levothyroxine if FT3 is too low

You need vitamin D tested

Couldn't see any vitamin D results in previous post

Vitamin D needs to be at least around 80nmol

Ask GP to test or NHS postal kit £29 here

vitamindtest.org.uk

Mishymoo22 profile image
Mishymoo22 in reply to SlowDragon

thank you fo ryour reply

i take a vitamin D every day it says 25pg on the bottle

when last checked about 6 months ago the doc said vit d level was fine. how would i take vitamin B and which one as their seem to be so many in the chemist to choose from

thank you for bearing with my ignorant questions i must say my feet have pained me so much i could hardly sleep last night.

since being diagnosed as under active my weight has gone from 61kg for the last 17 years to 82KG and climbing

i am so utterly depressed over this and they just dont listen

i am on 200 m a day

SlowDragon profile image
SlowDragonAdministrator in reply to Mishymoo22

Mishymoo22

You need to retest vitamin D

25ug is only 1000iu. It may not be enough

How low was vitamin D before starting on supplements?

Strongly recommend getting FULL Thyroid and vitamin testing privately

Many of us only made progress by doing this

Getting B12 and folate tested BEFORE starting on any supplements

Ferritin needs testing too

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

Do you have high antibodies? Ever had both TPO and TG thyroid antibodies tested?

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw). This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Just vitamin D test

vitamindtest.org.uk

If your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Mishymoo22 profile image
Mishymoo22 in reply to SlowDragon

thank you so much for your detailed helpful advice

i really appreciate it.

i am in work at the moment at the moment

i am going to re read this information later and get tested my thyroid is being tested at 8.40 am tomorrow so the tips about fasting and medication are really appreciated.

i will ask them for a full break down of the results when they are back and then from there go for private testing in all the areas you mention.

i have had to demand this blood test for tomorrow as the pain in my feet is really bad

i will keep you posted

thanks again

SlowDragon profile image
SlowDragonAdministrator in reply to Mishymoo22

Highly likely they will only test TSH of TSH and FT4....completely inadequate

SlowDragon profile image
SlowDragonAdministrator in reply to Mishymoo22

Low FT3 and/of low vitamin D often the issue

SlowDragon profile image
SlowDragonAdministrator in reply to phobicgirl

Explains how and why here

drgominak.com/sleep/vitamin...

Improving low vitamin D will increase need for B vitamins. So peripheral neuropathy can get worse as vitamin D levels improve unless also supplementing good quality daily vitamin B complex

SlowDragon profile image
SlowDragonAdministrator in reply to Mishymoo22

See reply about low vitamin levels

phobicgirl profile image
phobicgirl in reply to SlowDragon

Thank you also for taking the time to reply, I have a lot to learn but little concentration and most of my energy is taken up with just the daily tasks, then I'm shattered and brain fogged.

SlowDragon profile image
SlowDragonAdministrator in reply to phobicgirl

Concentrate on improving one supplement at a time

Getting vitamin D tested needs to be at top of your list

Come back with new post once you get results on vitamin D

phobicgirl profile image
phobicgirl in reply to SlowDragon

I have posted these results of vitamin d levels and I think there normal for nhs but would It be good to improve these levels. Still so much for me to take in. Serum total 25-hydroxy vitamin D level 65 nmol/L [50.0 - 150.0]

25-OH Vitamin D between 50 and 75nmol/L: may be

sub-optimal, although these levels are commonly

seen in autumn/winter. Please evaluate in light

of clinical picture.

NB Patients on alpha-calcidol may have low results

that are not indicative of actual vitamin D status

Thanks 🧚‍♂️

SlowDragon profile image
SlowDragonAdministrator in reply to phobicgirl

Anyone with thyroid problems tends to need vitamin D at least around 80nmol and around 100nmol may be better

Vitamin D mouth spray by Better You is good as avoids poor gut function.

Suggest you supplement 2000iu-3000iu for 2-3 months and retest.

It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

phobicgirl profile image
phobicgirl in reply to SlowDragon

Thank you

Spray it is

SlowDragon profile image
SlowDragonAdministrator in reply to phobicgirl

Widely available in most health shops or online

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