Endo phone consultation

[birkie]

Hi everyone ❤️

Well I've just had a rather interesting phone conversation with my new endo.. Who I can say is no longer my endo...quick run down.. Total thyroid removal in 2019 due to toxic thyroid (graves) put on T4 175mg..was still showing hyper symptoms noted by surgeon decreased meds until I was on 50mg I suffered from hyper symptoms and bowel/ stomach problems (inflammation of bowles with intestinal pain tender to touch) taken of T4 put on T3.. Seemed OK but still had slight hyper symptoms I developed an overactive parathyroid gland with a raised calcium level.. The endo who specalises in hyperparathiyroidism took over my case, he also took over my thyroid care.. He immediately weened me off T3 In conjunction with T4,, T4 dose 125mg T3 20mg I weened off T3 but since being on T4 for 22 days now I have noticed bad hyper symptoms returning with inflammation of the bowles and stomach problems I had to skip a dose at the weekend due to the way I felt (thought I was going to need to go to A&E.. 😔 I know it's the introduction of T4 causing the hyper symptoms, since then I've been taking half of 100mg and half of the 25mg..i e mailed the endo with this information he rang me today:

Firstly he says their is no corolation in T4 with bowle/stomach problems, second T4 is a well tested drug and is proven to help with thyroid conditions, third, he really doesn't belive that people can be affected by taking T4.. Their symptoms are symptomatic.. If their blood work shows their TSH, T3, T4 are normal their symptoms cannot be the drug.. ie.. Symptoms of.. Hyperthyroidism or hypothyroidism, their must be an underlying cause... I quoted blood work I had done in 2015 which showed a TSH at.. 0.08.. Pmol/L ranges.. 0.30...4.50...T3 at 4.8 pmol/L... Ranges.. 3.1...6.8..no T4 was done.. I had several very low TSH.. No follow up of these tests were done.. Endo said that was because it showed a normal TSH and normal T3... So no need for further investigation.. But in the paperwork it says SEE DOCTOR SOON WITH IN 7 DAYS!!!! IF TSH was normal why would it say this?.. My conclusion of this phone conversation with the endo is he seems to be going by test results not symptoms! He rhymed off about doing the blind test for people who think they have trouble with T4.. Giving them a placebo drug in his opinion it was all in the patients heads.. Then he went on to say.. "unfortunately we can never say that you will be better your hyper symptoms are probably to do with something else going on in your body.. Unfortunately you may have to live with this.. This is just life!!

Well I'm glad he is no longer my endo!!

My plan which he has agreed with is for me to continue on 62mg T4 get bloods done within a week look at results.. Then go back on T3 take Re bloods 6 weeks see those results go from their... He says T3 is not good for the long term health of a person with thyroid problems.. My impression was he would rather I felt awful on T4 but as long as my bloods were normal he would be happy... 😠

Sorry for this long post but I'm totally gobsmacked by his interpretation of thyroid conditions and medication 🙄🙄🙄

[Hibs1]

I won't comment on the rest of your post but agree with the T4 causing bowel and stomach problems without going into details

[birkie in reply to Hibs1]

Hi Hibs1

Believe me I know the T4 caused my stomach /bowle problems the first time I took it, it took nearly 8 months before my gp did anything about it because I'm lactose intolerant they and I put it down to that my blood work never improved and I was hyper on it even when my dose was reduced... As I say back on it now and everything thing has returned at the moment I'm in bed with a hot water bottle on my tummy as the inflammation as returned because I took my T4 again afrer a really bad weekend.. The consultant can say what he likes 🙄 I even said to him "well I know my own body" he said well that's not entirely true... REALLY!!! 😠

[Hibs1 in reply to birkie]

Shocking. The instant I took first dose my bowel habits changed. Similar symptoms to before I was diagnosed with Coeliac disease

[birkie in reply to Hibs1]

Hi Hibs1

That's strange I have colitis, lactose intolerant to.. so how a consultant can say he sees no connection with T4 and stomach /bowle problems is behond me... For one thing I'm the one with the symptoms.. And when I was on T3 I didn't have bowel or stomach problems just slight hyper symptoms so I'd rather go back on T3 than have these awful T4 symptoms 😔

[Hibs1 in reply to birkie]

Very narrow minded. Not looking out of the box

[birkie in reply to Hibs1]

If you ask me their intrigrated in to the cardboard... 👍

[DippyDame]

Gosh he really has the wrong end of the stick !

It's the old tactic, if they don't know what they are doing they blame the patient for any symptoms that crop up.

" Take more exercise and eat a healthy diet" being one of the old chestnuts!

We need to focus on FT4 and FT3 both of which should be close to 75% through their respective ranges.

From those, we can judge whether or not we are adequately converting T4 to T3 - a high FT4 with a low FT3 indicates poor conversion and the possible need for T3

TSH is of little significance one we take thyroid hormones but basically low TSH suggests high hormone levels /overmedication while high TSH suggests we are undermedicated.

Medics are currently wedded to treating by TSH....there are better ways!

This is the second post today that I've responded to where the medic involved relied on a "that's life" type response. This is a disgrace! I'm no longer " gobsmacked" but it is concerning.

Hope things improve soon

[birkie in reply to DippyDame]

Hi DippyDame♥️

Thanks for the reply

I really don't know what school of medicine he graduated from!! But he even slipped in a reference to people believing snake oil can cure everything🙄 for goodness sake I'm not interested in flipping snake oil just in getting better, then he went on to say.. Do you know people with no thyroid problems take T3 For the uforic feeling... Hey mate I have no thyroid and want to feel better,, jerk!!!

[DippyDame in reply to birkie]

You've probably got a better ubderstanding of thyroid disease than he ever will....you're living it!

[SlowDragon Administrator]

Sounds like he trained under that infamous Professor......

healthunlocked.com/thyroidu...

Onwards and upwards

[Anthea55]

For bowel and stomach problems - have you tried taking thyroid hormones with food? This is recommended by Dr Myhill and Dr Ken Blanchard. Also recommended by Dr Peatfield when I saw him.

See this link, under 'Timing of Dosing'

drmyhill.co.uk/wiki/Thyroid...

In his book 'The Functional Approach to Hypothyroidism', Dr Blanchard has a theory 'that thyroid hormone contacting the stomach wall has never occurred in the evolution of the human race until we started taking oral thyroid about a century ago.' He also mentions allergies to thyroid pills.

His book is well worth a read.