Phone conversation with endo.

[sobs1962]

Just had a phone consultation with my endo and he's happy for me to carry on with levo at 100mcg but is concerned that if my TSH remains suppressed last 2 tests was at 0.01 on scale of 0.5 - 5.50 and he says that can't carry on as it puts me at risk of osteoporosis and also says he is going by the NHS guidelines on these matters. He said that if I was buying my own medication like the system used in the U.S. I could carry on as it wouldn't affect the NHS system. I don't really know what to think, he wants bloods tested again in August and see how my TSH looks then and if it's still suppressed lower my dose again. Any thoughts or wisdom greatly appreciated.

[SlowDragon Administrator]

Obviously at next test it’s essential to test Ft3 and all four vitamins

What vitamin supplements are you currently taking

Likely to need to test privately

If Ft3 is not over range you’re not over medicated

Make sure to test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Remember to stop taking any supplements that contain biotin a week before all blood tests

[sobs1962 in reply to SlowDragon]

He said only he ( a consultant endocrinologist) has the authority to order FT3 test and GPs cannot order this test which is absolutely ridiculous and without it they CANNOT say I am over medicated. Honestly I feel like I'm fighting a losing battle against the so- called experts who are anything but. Will probably get more tests done through Monitor my health as are cheapest option. Don't know whether they'll re-test my vitamin d, b12,folate and ferritin so will probably have to pay for that too which is very difficult when you're living on benefits due to ill health. I'm slowly but surely losing the will to live as my mental health is really bad at the moment but start a course of long term psychotherapy next week which I've waited three and a half years for. Thanks for all replies, very much appreciated.

[SlowDragon Administrator in reply to sobs1962]

Do you wear a Fitbit or equivalent?

Very helpful if you have suppressed TSH to show you are not over medicated

Ideally Testing vitamin D twice year

Folate, ferritin and B12 annually

[sobs1962 in reply to SlowDragon]

Unfortunately I can't afford to buy expensive items like that but as I don't take any exercise at all at the moment can't see how that would help. How does it help with proving you're not over medicated?

[SlowDragon Administrator in reply to sobs1962]

If resting heart rate is low you can’t be over medicated

I find it extremely helpful

My TSH is suppressed but resting heart rate is 54-58

Reducing my levothyroxine dose sees heart rate drop under 50....and TSH remains suppressed

[sobs1962 in reply to SlowDragon]

My average resting heart rate is around 80-90 but I do have severe anxiety and am trying to get off propranolol am currently at 2.5 mg twice a day and will cut down to 2.5mg daily at end of May and stay on that dose for another 6 weeks then start taking alternate days,then twice a week and only then will I stop taking them,they've really messed with my heart rate.

[Anthea55]

ThyroidUK website - the myths of hypothyroidism

thyroiduk.org/further-readi...

The last one listed is the myth that a 'suppressed TSH leads to Osteoporosis'. Whether you can persuade your endo that the NHS guidelines are out of date, I doubt.

Many of us have suppressed TSH below range.

[shaws Administrator in reply to Anthea55]

Once-upon-a-time - before blood tests were introduced as a diagnosis - we were diagnosed upon our clinical symptoms alone. We were then given NDT (natural dessicated thyroid hormones) that contain all of the hormones a healthy gland would produce) and it saved lives from 1892 onwards and even today. There were no blood tests then.

The only problem is that in the UK - those we would expect to be more knowledgeable than us, the patient, only to find out that the professionals are the least knowledgeable than the majority of members on this forum.

The professionals are very 'hard-hearted' as they have removed NDT through misinformation and without warning causing patients enormous distress despite it saving lives since 1892 (the very original replacement and before that we just died )in order to get it withdrawn without notice. They also did similar with T3 except it was the surge in costs that enable them to do so. The only drawback is that, in order to get T3 prescribed, endocrinologists have to be consulted and I believe the majority wont prescribe.

The problem with this is that few endos actually will prescribe T3 for the symptomatic patient so we are back to square one.

It would be good if we could be diagnosed/treated before blood tests became a priority over clinical symptoms..

[DippyDame]

'He said that if I was buying my own medication like the system used in the U.S. I could carry on as it wouldn't affect the NHS system. " Very odd comment!

Interpretation from this cynic.......he isn't concerned about your TSH result but he is afraid to be seen to be going against NHS guidelines ( guidelines are just that; not rules) i.e job before patient!

Dosing by TSH alone, rather than by full thyroid tests and (importantly) also by clinical evaluation, will not provide the individual treatment protocol you need

Follow SlowDragon's advice

Private testing will check all you need to know for thyroid function evaluation

thyroiduk.org/help-and-supp...

You might also find this of interest...you have mentioned fibromyalgia

healthrising.org/blog/2019/...

Good luck

DD

[pennyannie]

Hello Sobs

The TSH is the least important number to be looking at and was originally introduced as a diagnostic tool to help confirm a diagnosis of hypothyroidism :

Once on any form of thyroid hormone replacement it is the T3 and T4 that need to be measured, and we generally feel better when both these vital hormones are balanced and in the top quadrant of the ranges.

T4 is a storage hormone and needs to be converted by you body into T3 which is the active hormone that the body runs on.

These hormones need to be tested together to see how well your conversion is, as this can be compromised by low vitamin and minerals, which is why we suggest running ferritin, folate, B12 and vitamin D at the same time.

I was refused these blood test on the NHS and did them for myself, and am better for monitoring and medicating myself.

The fact is the guidelines that the NHS work to are not fit for purpose and in some ways this endo s is not wrong in his suggestion - but I don't understand why they as medics don't stand up for what they know to be wrong in their specialisation and work to implement change where it is desperately needed.

[DippyDame in reply to pennyannie]

"... but I don't understand why they as medics don't stand up for what they know to be wrong in their specialisation and work to implement change where it is desperately needed."

Fear!

If medics do not toe- the- line (ie follow NHS guidelines) then they risk being called in front of the GMC and ultimately risk losing their GMC registration, with a licence to practise.

As thyroid patients we can be (and often are) left between a rock and a hard place, and medics can be left trying to do their job with their hands tied behind their backs. I'm guessing that's where this endo, seeing sobs1962 , finds himself.

I doubt any dissension from medics would be viewed favourably by those setting the NHS guidelines!

Just a thought.

DD

[fuchsia-pink]

Ask to have dexa bone scan to see how your bones are NOW - this will give a really useful benchmark for the future - so you can show the GP (and yourself) what impact a suppressed TSH (as a consequence of being on thyroid meds) actually has on your bones. My expectation: no difference at all.

[Batty1]

What do you mean “like the system in the US” and do you take antidepressants? If so from my past experience these antidepressants can make the most medically loved TSH fall very low.

[sobs1962 in reply to Batty1]

No I don't take antidepressants because my depression is so called " treatment resistant " and that's mainly because I have Borderline personality disorder and have tried antidepressants for over 25 years with no success. What I mean by the U.S system is paying for medications. I was put on antidepressants long before my Hashimotos was diagnosed and they just don't work on me,simple as that, so it's not antidepressants that are giving me such a low TSH. Just had enough of everything at the moment.

[jacobite33 in reply to sobs1962]

Sobs1962 been reading your post and I am sitting here feeling humbled and filled with utter respect and admiration of your inner strength! The will and drive to keep seeking the knowledge and know how to better your health.My mood has been terrible this past year and I have been looking at new research on treatment resistant depression.Well apparently my thyroid was ok and hence accepting anti depressants that I found weren’t helping either.I also note you mention BPD and I was sure this is also mentioned under research within these new approaches.Found a quick link and hope that could be of interest to you if you have not already came across this.Sobs1962 I am in no way intending to offend you or comment on something I know utterly nothing about or have experienced.Just thought if in any way be it off the slightest it may help is the only reason I write this.They say that the NHS will be prescribing these under controlled conditions along with psychotherapy with five years

frontiersin.org/articles/10...

[tattybogle in reply to jacobite33]

Well ... I never thought i'd live to see Ecstasy and Acid on the NHS ..

By the way Sobs1962 , i don't know if you are aware , or if it's relevant to you , but did you know that the other people (apart from Endocrinologists) who can prescribe T3 are psychiatrists... as well as hypothyroidism , it's also used effectively for 'treatment resistant Depression'

[sobs1962 in reply to tattybogle]

Yes, I was aware that psychiatrists could prescribe T3 for treatment resistant depression but have spoken to my psychiatrist and he has no experience with it and would want to make any decision in conjunction with my GP and Endocrinologist so we all know how that would go, sorry too much £££££.

[sobs1962 in reply to jacobite33]

Very interesting article but this all done in Switzerland. I'd be very surprised if it would ever happen in the UK, but I suppose stranger things have happened.

[jacobite33 in reply to sobs1962]

Just last month a ketamine assisted one opened in Bristol.Unfortunately that’s private if I recall correctly.There’s even pysilocybin nasal sprays that’s been developed.Albert Hoffman (LSD) first produced a synthetic form of pysilocybin in the 50’s and the research benefits outcome although not as in depth as now was documented.It’s all been suppressed they say.It’s very very interesting though and with very few side affects

[sobs1962 in reply to jacobite33]

Fascinating but with me, hopefully 18 months of one group and a one to one session each week will help me but if my depression doesn't lift sufficiently by then,I'll certainly bear it mind and ask about it.

[jacobite33 in reply to sobs1962]

There’s always a better path to tred.It’s just piecing the jigsaw together with help and understand from within and from others to take that first step.It’s always a hazy horizon that becomes clearer as we near.The good thing is we can always change when it becomes clearer and we feel it’s not for us.Take a look back and admire that it’s your strong will from within that’s kept you going!

[sobs1962 in reply to jacobite33]

Thanks for that,that means a lot coming from someone who doesn't know me. There have been so many times I've believed that am a weak and useless person and no good to anyone and honestly I still believe that and I've no idea what has kept me alive as I very often feel it would be better if I was dead and those around me would be better off without me.

[jacobite33 in reply to sobs1962]

Just negative thoughts that unfortunately can consume us and control our decisions and behaviours.Hopefully you will get your thyroid under control with the help of these fine people.There very knowledgable and helpful.Oh and don’t thank me thank yourself!