is it so difficult to establish correct protocol for hypothiroidism ?

[ivy77]

i just can not believe that i had to be guinea pig, and spend 3 years , to learn the most basic stuff on thyroid hormones and adjusting them correctly:

1. ft3 is the active hormone, your well beeing depends on the right level of that active hormone - and that is upper half of the lab range!

2. ft4 relates to ft3 and good ratio is around 3.5! (i had it before medications, after 3 years of medicating with t4 only it shot up to 6 almost!!!--- points to classic conversion problem!)

3. TSH if elevated above 2.5, points to hyprothioridism, but is almost usless in all other instances it does not say anything about you beeing well treated. it will always fall on adding either t4 or t3 medications. Recommended therapy of adding t4 only will surpres TSH and this may not make you feel right.

4.in severely hypothiroid people t4 meds will not work above 75 mcg doses......and are incomplete

5. how to track your hypothirod condition back ? if you were sleeping with blanket in the summer, or hated winter....once you get both that you can not tolerate heats as well then you are probably 10 years overdue for a treatment

6. thyroid affects EVERY single cell in your body, chronical pains are symptoms of low thyroid

7. effective treatment of hypothiroidism must target ft3 lvls first , and balanced t4/t3 ratio...and work on a symptoms base.....combined therapy is standard for hypothiroidism, t4 only if good ft3 lvls can be achieved

8. synthetic combined therapy WORKS! and is maybe even better then pig hormones

9. if adding t4 dose makes ft3 lower, treatment MUST include combined therapy and t4 medicine reduced, adding too much t4 medications slows metabolism further and is EQUALLY HARMFUL as beeing hypothiroid first place!

IS THIS SO HARD??? that this modern medicine can not learn basic principles, this is not rocket science??

i dont get it...to me it seems so simple...i learnt it on my skin and taking few months time to educate myself, my biggest source of information was my body though, so it may be that to doctors who never had thyroid problems this sounds so complicated...and they lost in woods, and dont see a tree anymore....BUT this is scary how it can happen that out of this simple protocol one makes so much of misstreated patients!??? and that none of those docs suffered from hypothiroidism him/herself

HOW IT HAPPENED??? what is the problem there?

if you feel something should be added to the list pls feel free, i suspect some may disagree with 8. i think to avoid autoimune reactions in some people synthetics are safe, and am sure are equally potent.

number 4. i concluded from my experience only maybe 75 mcg is not the same dose for all...ofcourse for some may be 50 mcg only!

[PinkNinja]

This seems like a list GPs should have available to them whenever they treat a patient with hypothyroidism. Although some of the details may be different for different people (for example, any amount of t4 makes me very ill) these are very good general guidelines that we shouldn't be left to figure out on our own.

For what it's worth, number 8 may well work best for some people just as NDT works best for others. Synthetic combination treatment can most certainly work well and shouldn't be dismissed, especially if all other protocols have failed to give a good result.

Thanks for posting.

Carolyn x

[ivy77 in reply to PinkNinja]

yes...i just wanted to sum it up, i have a feeling i would be able to do better job now then my doctor!

i was thinking 3.5 is ft4/ft3 ratio found in normal healthy people....thats why that same ratio should be taken as therapy! or different according to specific issues.....but this ratio should be targeted in the blood, in most cases...this should be SAFE and conservative principle!

but definitely they picked completely wrong conservative approach with t4 monotherapy!......it is creating imbalance long term, and is questionable how good all those patients are, when they never tried better........

[waveylines]

Hi -the truth is that we are all different -some people do really well on T4 only, some do well if a little T3 is added in, some do best when on a natural dessicated thyroid and some do best when on T3 only. The trouble is we are led to believe this is a simple condition to treat but for a significant proportion of us it is not! And the only way to find out what works for you seems to be trial and error which takes time as changes have to be slowly and progressively undertaken. Then there is the issue of vitamins and minerals -many hypothyroid people are deficient and these need to be addressed to optimise uptake and usage of thyroid hormones.

Doctors are just not trained up to look at the diversity that is needed for full effective treatment -they are given a very narrow protocol that many are reluctant to step away from and for those that do the threat of the GMC may loom.

[Hidden]

this is an excellent encapsulation of what is wrong with the treatment of thyroidism in Britain. What a shame there isn't anybody or organisation we could send it to that might think of following it as Good Practice. :O(

[greygoose]

Ivy, I addressed this problem in the following post.

healthunlocked.com/greygoose

If you want to know 'why', follow the money. That's generally good advice!

Hugs, Grey