NHS endocrinologist appt a waste of time as I expected - I just want to cry!

[Tabbycat76]

Once again he was everything I've grown to know NHS Drs and 'Specialists' to be - abrupt, unsympathetic and unhelpful. I'm not sure whether it's worth continuing down the thyroid route or not.

Symptoms include generally feeling unwell all the time (for the last 20+ years) tired all the time, chronic pain, food intolerances, frozen shoulders, anxiety, hard to lose weight, exercise intolerance. I've had an underactive thyroid for 30 years.

Recent results via Medichecks, which the endo said were all absolutely fine (apart from folate serum):

TSH 1.29 mU/L Range 0.27-4.2

Free T3 4.01 pmol/L Range 3.1-6.8

Free Thyroxine 18.7 pmol/L Range 12-22

Inflammation CRP HS 1.04mg/L Range 0-5

Ferritin 108 ug/L Range 13-150

B12 118 pmol/L Range 37.5-188

Vit D 71.4 nmol/L Range 50-200

Folate -Serum 3.15ug/L Range >3.89

Thyroglobulin antibodies 80.9IU/mL Range <115

Thyroid Peroxidase Antibodies 9.96 IU/mL Range <34

The only thing left to do I guess is get myself on a Folate supplement and make sure I'm only prescribed the same brand thyroxine and stick to Mercury Pharma. Any other advice would be most welcome...

[Lalatoot]

Sorry you have had to go through this.Your vit d is low. Better if it was 100. I would think about supplementation 4 hours away from levo.

You have room for an increase in levo which may help.

[shaws]

I would ask for a check on your B12, to ensure you do NOT have pernicious anaemia. I have this condition. If you did have P.A. you would have to have a quarterly B12 injection. I have a monthly injection.

[fibrolinda in reply to shaws]

B12 result is there shaws Op result is 118, range 35.5-188

[pennyannie]

Hey there again :

Your T4 is around 67% through with your T3 at just around 27% through the range.

There is room for an increase or two in T4 thyroid hormone replacement and we generally feel at our best when our T4 is in the top quadrant of the reference range as this should in theory convert to a give you a higher level of T3 as it is low T3 that causes all the symptoms you are suffering.

The accepted conversion ratio when on T4 medication is said to be 1 - 3.50 - 4.50 T3/T4 and most people eel at their best when their conversion ratio comes in at around 4 or under.

So to find your conversion ratio you simply divide your T3 into your T4 and I'm getting yours at 4.66 - so your conversion is compromised.

I'd look to improve vitamin d to around 100 and folate to around 20 :

You did mention on a pevious post about seeking out Natural Desiccated Thyroid and this may well suit you better as it has a T3/T4 mix of thyroid hormones along with trace elements of T1. T2 and calcitonin.

I am with Graves post EAI thyroid ablation and was not able to have prescribed anything other than T4 which wasn't working well for me, but I did fall into ranges and so seen as ok and it is so upsetting and understand your disappointment and disillusionment.

I now self medicate with NDT and am much improved so there are options once you feel confident in treating yourself.

[Tabbycat76 in reply to pennyannie]

Hi there. Thank you for taking the time to reply. Could you please PM me and met me know where you get your NDT from and how you know how much to take? Thank you

[pennyannie in reply to Tabbycat76]

You will still need optimal vitamins and minerals for any thyroid hormone replacement to work well for you.

A dose increase in T4 plus optimal vitamins and minerals may just do it for you and this would be the easiest first best option.

Some people can get by on T4 only :

Some people find T4 seems to stop working as well as it once did :

Some people find they feel better adding in a little T3 to their T4 meds :

Some people can't tolerate T4 and need to take T3 only:

and some people prefer to take Natural Desiccated Thyroid.

20 odd years ago all these options were available from your doctor in primary care to trial. and if you found yourself on one or the other, so be it, and it was readily prescribed.

Now all your doctor can prescribe is T4 and if you complain you may get anti depressants and possibly a referral to an endo, but that is no guarantee you will be meet the criteria for anything other than T4 as it's all about finance and not medical need.

From where you are there are 2 options . but both will be adding in some form of T3.

You might like to read a book that was written to enable patients to feel equipped to self medicate and written by a doctor who was hypothyroid and took NDT:

Barry Durrant-Peatfield writes in an easy to understand, sometimes insightful, amusing manner in Your Thyroid and How To Keep It Healthy :

Start reading up and look at all your options and which ever way you choose to go there are forum members here who have the experience and knowledge to support you.

[greygoose]

You are a poor converter, that's why you still have symptoms. But, doctors rarely understand that. You might improve your conversion by improving your nutrient levels, and by taking selenium, but there's no guarantee.

Increasing your levo is unlikely to increase your FT3 enough to make you well. And, could actually make your conversion worse.

So, what you would need would be procure some T3 - either by getting it prescribed, if you can find an endo willing to prescribe it - or by buying it yourself. But try improving your nutrients first.

[SlowDragon Administrator]

So yes …first steps

ALWAYS get same brand levothyroxine

Request GP add note to all future prescriptions

“Mercury Pharma brand only”

As discussed in previous post

healthunlocked.com/thyroidu...

Thyroxine brands are 100mcg - Teva

50mcg - Mercury Pharma

Not sure if these are same every month

Multivitamins never recommended on here

Suggest you stop that instead taking a daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Improving vitamin D to at least around 80nmol and around 100nmol maybe better

How much vitamin D are you currently taking

Retest thyroid in 6-8 weeks

If Ft3 levels remain low …going to need T3 prescribed alongside levothyroxine

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors who will prescribe T3

[e-mail]

Private prescription enables access to Thybon Henning 20mcg tablets T3 at 50p per tablet

Typical daily dose is 2 or 3 5mcg doses per day - cutting 20mcg into 1/4’s ……so approx £10-£15 per month

[greygoose]

They've gone. lol

[Regina66]

Hello, we empathise!!!! May I ask what’s your diet and if you take supplements? Drs don’t even mention them and they do make a difference. The basics: an anti-inflammatory diet, vitamin D, Magnesium, selenium which is vital for thyroid function, oregano oil… gut issues can be the cause of all your symptoms (parasites) when tests look optimal. Check this out online it might help!!!!! just by eliminating certain foods, correcting deficiencies and optimizing hormones, important changes can occur, but for the people that don’t, parasites can be the cause and this is a subject that I don’t see widely discussed in forums/patients like us.

[Wendyrmn66 in reply to Regina66]

Parasites?? Can you elaborate a liitle more on this please Regina66. New hashis. High ferritin levels. Sure i read about parasites somewhere else too! 🙄🤔🤔

[Ziburu]

I went through a few endos so share your pain! Hated levo so changed endo AGAIN. Was v pleased when I trialled T3 and felt much better.

Have you tried T3?

[Batty1]

I feel for you no matter how bad you feel if those labs are in range the witless consider you perfect…its hard to battle!

[jillyana]

So sorry you are so unwell. Both of my shoulders are frozen as a result of untreated hypothroidism. I didn't even realise what caused the condition until I went for physio. I take thyroid S as well as Levo. but although the combination has improved certain aspects of my life, the frozen shoulders are still the same.