Need to re-think this whole thing....

[yorkshiregirl44]

Hi everyone,

I dont think i can tolerate this system anymore,,endless doctors appointments...referrals to specialists who do only the same investigations as your GP.No concusions to any referrals...the merry go round does not end.

My last appointment was interupted by the nurse bringing in coffee, three times he brought in files. I should have walked out and told them i would wait until he had time to see me. So you leave angry and frustrated...but never again. I am going to maintain my own boundries and was in acceptable behaviour towards me and what is not.

Has anyone had any success in seeing a specialist when you have had a complex range of symptoms...im thinking when symptoms dont fit comforatably into neuro, endo, rheumy ect.

My doctor and practice manager are both very helpful and understanding yet im no further forward in finding solutions to improve my health.

Thanks

Christine

[Hidden]

yorkshiregirl44,

Sorry to hear of your bad endo consultation experience. Unfortunately they are all too common.

I skimmed back through your previous posts but couldn't see any recent thyroid blood test results. I know you have Hashimotos. What meds and dose are you on?

Some of your symptoms are very strange but could still be attributed to inadequate thyroid hormone. I have previously had some weird symptoms and could identify with your feet walking into the ground. Mine still feel as if they are stretching in bed....so weird.

If you post recent tests results complete with ranges (numbers in brackets), members can comment.

Also have you had Vit D, Vit B12, folate and ferritin levels checked as optimal levels are needed for thyroid meds to work and deficiencies can lead to strange symptoms.

If your endo refuses to help you then you need to help yourself yorkshiregirl44

Flower007

[yorkshiregirl44 in reply to Hidden]

My last results were tsh below 1.00 and t4 in high end range..iv not got them to hand.

Did have bloods done on wed including vit D.

Yes a whole load of strange symptoms taking me to A-Z of consultants.

Been looking today to go private for full set of testing....is it a waste of money or a good idead..im not sure.

Did you ever find a cause of your strange leg feeling?

Thanks

Christine

[Hidden in reply to yorkshiregirl44]

yorkshiregirl44,

Low TSH and high end range T4 sound good if you are medicated on Levothyroxine (are you?) but we have no idea what the T3 is doing. You need to post TSH, T4 and T3 test results with ranges for members to be able to see a clearer picture.

Thyroid issues can have far reaching effects and could easily be accountable for extremely strange symptoms.

I have a managed to recover from a lot of symptoms through good thyroid meds but still have a few weird things going on. I have very very high iron and B12 so am investigating and treating these at present.

Like most of us I feel my journey is long and complicated but have come a long way since becoming hypothyroid four years ago.

Flower007

[Ansteynomad]

The short answer to your question is 'no'. The NHS wasted nearly ten years of my time and their money looking at every symptom individually.

The answer I found, and I have basically engineered my own recovery, is to unpick the whole situation, give it a good shake and then rebuild it - a bit like a jigsaw.

For me, getting the vits and mins right made probably the most difference overall to how I feel, especially vitamin D. NAX played a big part too.

However, we are all individuals and in this, perhaps more than in other conditions, there is no 'one size fits all'.

Would you like to share some test results - with reference ranges - or tell us which symptoms are particularly bothering you?

What medication are you on, and how much of it do you take?

[yorkshiregirl44 in reply to Ansteynomad]

Iv really tried and still ttrying. Seen Dr. P had genetic testing and so on.

Taken vits and minerals..no change.

Main symptoms

breathing probs when laying/sitting,

heart stopping/jumping,

red hot when doing activities.

dry flushing to face

pressure in lower organs

bowel/urine incontinence

muscle weakness

muscle pain

legs wont work when been in bed

cramps

fatigue

posion feeling throughout body

think i should leave it there

Any ideas

Chrisinte

[greygoose in reply to yorkshiregirl44]

Well, they could all be thyroid related. As thyroid hormone is needed by every single cell in the body to function correctly, anything and everything could be thyroid related until proven otherwise.

However :

muscle weakness (which includes incontinence); cramps; fatigue; heart irregularities; muscle pain could all be low magnesium and zinc.

breathing problems could be low vit B12 or vit A...

When you say that you've tried taking vits and mins, what exactly does that mean? Did you get tested so that you knew exactly what to take and how much? Do you know what to take with what because they all work together? Forgive the questions if vits and mins are your specialty subject, but so many people buy a multi-vit from the supermarket and call that 'taking vits and mins'. That's not likely to help anything!

And you really do need an FT3 test to find out what's going on.

[yorkshiregirl44 in reply to greygoose]

No not my speciality.

Some genetic testing showed gene mutilation which affects thyroid production....nutriationist gave list of supplements to take.as did Dr.P.but mainly i tried over the counter stuff.

My nephew who has recently been diagnosed wiith an underactive thyroid problem went to his doctor with muscle weakness and other symptoms he was told he had myopathy....i on the other hand got sent to a neurologist 3 times who beleives i have myopathy, this is 4 years on from telling them about symptoms and any symptom bothering him he writes to his endo...thats good practice.

Christine

[greygoose in reply to yorkshiregirl44]

Well, maybe you should get yourself tested for vit D, vit B12, folat, iron and ferritin, and we can work out a Schedule from there. It's best to take what you really need rather than a lot of stuff in case you need it.

That gene mutation, does it affect thyroid hormone production, or conversion of T4 to T3?

[yorkshiregirl44 in reply to greygoose]

I think maybe the conversion i will check..it was some time ago and the nutrionist explaining it to me charged by the half hour and my time ran out to go more into depth.

I was trying to discuss this and Dr. Ps diagnosis of adrenal fatigue with my endo on wednesday..he was not interested. It seems to me that if its not said by the NHS then it cant be true.

[greygoose in reply to yorkshiregirl44]

If they didn't do it in med school, it doesn't exist! And I doubt they did any genetics.

Anyway, if it affects your conversion, you're g to need some form of T3 to feel well.

[yorkshiregirl44]

Use non stick cookware, no coffee maker or foi, no slow cooker. Not had any water testing and i get bloated when i eat anything nd when i dont eat.

Good to see your still here helping

Christine

[TigerTea]

What's wrong with slow cookers? I have one with a ceramic inner! 😯

🐯T