Private Endo's

[Odinil]

Hi

I live in Essex, any recommendations for a friendly private/nhs Endo who is T3 friendly. I have my yearly hospital appointment with Endo at Addensbrooke in December but after speaking to a nurse over the phone in Endocrine about how i was feeling and that i would appreciate a one to one appointment rather then a telephone consultation, she said she would pass my comments on to the Endo, next thing i get is a letter in the post to say T3 would not be prescribed. I wasnt asking to be prescribed T3 i told her my blood test results and felt i could be a poor converter and my smyptoms, I just know that my hospital blood test results that im having in a couple of weeks time will confirm my Medicheck results that my T3 is low and my T4 high so i am prepared for the Endo to go against everything i say. I am suffering and i need to do all i can to feel well again, the only way it seems is to go private, i just want the truth, it unnerves me that we are being denied medication even though they know we may need it to lead a normal life, i dont want to be lied to about T3 im prepared to pay for it if i need it i just want them to be truthful, maybe if i say i will pay for it myself i will get the truth. All this because of money!!!

Any recommendations by private message would be much appreciated, many thanks

[SlowDragon Administrator]

Email Dionne at Thyroid UK for list of recommend thyroid specialist endocrinologists...NHS and Private

[e-mail]

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of how low TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Looking at previous posts you are on very small dose of levothyroxine and multiple vitamin deficiencies.....suggests under medicated

[Odinil in reply to SlowDragon]

I just cant get my head around it all.

By increasing my levo which is already outside normal range 23.1 wouldnt that just take me even more out of range? Does increasing levo bring down T4 levels? The higher the levo dosage the more symptoms i experience. I got myself to 62.5mg and felt just ok but i had to change my levo brand Actavis to Accord it didnt agree with me nor did Mercury Parma so now taking all 62.5mg Wockeharte. Im not feeling great. Medicheck's advice was that i may need a slight levo decrease. Im so confused.

I have been taking better you vit d dlux 3000 oral spray and oral spray better u b12 before the vitamin b12 i took Igennus super b complex but felt very weird, so ive been using the spray and going to try b complex gradually like half a tablet first together with the b12 spray.

Will increasing my levo bring my T3 levels up, im the low end of range T3?

[SlowDragon Administrator in reply to Odinil]

You may need to increase dose and Ft4 be over range ....but some people find they can’t tolerate high Ft4

If symptoms get worse, on higher dose levothyroxine, then the other option is to add T3

But before considering adding T3 it’s essential to have OPTIMAL vitamin levels otherwise it’s difficult to tolerate T3

Vitamin D at least over 75nmol

Serum B12 over 500

Active B12 over 70

Folate at least half way through range

Ferritin at least half way through range

[Odinil in reply to SlowDragon]

Ive never been able to tolerate high dosage of levo thats why im only on 62.5mg anything over like 75mg made me ill.

Is the answer to just keep going with the vitamins and keep getting tested otherwise i wont know if its working. My last blood test that the gp order on the 9th October was:

FT4 14.5 9.0 - 20.0

Wouldnt do T3

Ferritin 53 20-275

B12 197 180 - 914

Folate 6.0 2.7 - 34.0

I wasnt going to start the b complex until after i have my bloods done in a couple of weeks time in readiness for my hospital appointment so they can get a clear picture of what my levo is doing. What do you think?

[SlowDragon Administrator in reply to Odinil]

yes probably....though NHS only test for and treat deficiencies

B12 is really terribly low and folate very low

Have you had full testing for Pernicious Anaemia?

pernicious-anaemia-society....

No vitamin D?

Ferritin is borderline

Vitamins are low because you are under medicated

Have you tried liquid levothyroxine

Or splitting daily dose levothyroxine into 2 doses am and pm

On just levothyroxine Ft4 should be up at least around 18-20

[Odinil in reply to SlowDragon]

I asked gp for a Pernicious Anaemia blood test but was refused? Said my B12 was in normal range the lab will refuse to do it and they did. I will look to see how much Medicheck is.

My vitamin d was ok.

He said everything was normal.

I give up.

I havent tried liquid levo, what do people think of it on here, have there been good results?

Do you mean take my 62.5mg am and pm?

I dont know how else to get my vitamins optimal, i can only do what im doing other then take the b complex as well as what im taking at present, D and B12 oral spray.

I have just looked up a Pernicious Anaemia, its £280 not sure i can stretch to that, are there any other blood tests they provide that can help?

Also i forgot to mention that i feel a tightness around my throat and like i have something stuck in it which makes me feel panicky

pernicious-anaemia-

pernicious-anaemia-

[SlowDragon Administrator in reply to Odinil]

Levothyroxine - I meant take 50mcg am and 25mcg pm ....to manage small dose increase

And creep dose up slowly

But you need Vitamin levels much much better first

Personally I would just start on B vitamins as soon as seen endo.......unless you can get him to run test for PA

Yes liquid levothyroxine often successful......but expensive and only available via endocrinologist....almost similar price to T3

[Odinil in reply to SlowDragon]

I'll see what endo says, that does sound a good idea to split dosage if i need to increase. I will also start b complex after appointment. Ive no idea how much T3 is could you give me some idea, does T3 and liquid form come from abroad?

[SlowDragon Administrator in reply to Odinil]

NHS can prescribe both ....but rarely do. Jumping through lot of hoops required

Cost of liquid levothyroxine to NHS

healthunlocked.com/thyroidu...

Cost of T3 to NHS

20mcg recently reduced last month in price to £121

10mcg and 5mcg unchanged

healthunlocked.com/thyroidu...

Private prescription for T3 enables access to cheap T3 from Germany - 31 euro for 100 tablets x 20mcg

But Brexit may be an issue

[Odinil in reply to SlowDragon]

Thank you, what will people do if Brexit makes it difficult, where will they get it from, what a worry

[helvella Administrator Thyroid UK in reply to Odinil]

I do not know of anywhere in the world that accepts UK prescriptions - other than the current EU agreement which is surely going to disappear.

Broadly, two options. Either individual patients getting prescribed and the medicines officially imported as "specials" - at great cost. Or obtaining without a prescription as and when available. With the additional cost of VAT and £11+ customs clearance charges.