Immense pain

[Bellaboo2013]

Hi there

Having suffered for years (approx 10 years) I'm now writing with an update regarding my progress.

I have severe carpal tunnel in both wrists which is extremely debilitating causing problems daily with every day life inc sleep and more recently excruciating lower back pain particularly around my spine and coccyx.

I've spent the last month trying to have a nap in the arvo as some days I struggle to put one foot in front of the other and my words slur as if I'm drunk but have a 3 year old - so this is extremely tough.

My forgetfulness is absolutely horrendous....sometimes I'll be talking but completely forget what I'm saying and this is happening more and more 🤔and I've also been suffering with sore throats when I'm really low but usually clears up in few days.

I find I'm taking more and more ibuprofen, codeine and paracetamol just to make it through the day and this can't be good.

Financially I've had to re mortgage as being self employed I simply cannot put in the hours to earn reasonable money....

So...... I'm so lonely-others around me don't 'get it' (apart from my mum who has lupus) and I swear think I'm just 'going on'

I have shown my results on here and has been identified that my T4/T3 conversion is poor coupled with very high creatinine levels. I've been hounding my GP's weekly and being a complete pain in backside who have told me I'm depressed and all my symptoms are disassociated from my condition as they consider my results within or just outside of normal range therefore, all symptoms can only be treated individually!

So, I decided to take my mum in which is ridiculous considering I'm 40 but she knows me and has the headteacher approach armed with research and notes relating to my results ready to fight.....after telling them they don't have the the expertise within the surgery to deal with it and that we will not simply go away they've finally they've agreed to refer me to endo so let's see what this brings!

Sometimes I just need to let it out (sorry)

Does anyone know if I weren't under-treated could carpal tunnel go without surgery?

Can my income be topped up until successful treatment?

Have any other ladies noticed fluctuations in energy levels etc linked with menstrual cycle which is pretty non existent these days anyway?

Has anyone tried the gene test? (Mother-lupus, bro-MS, grandmothers hypo & hyper, dad-hypo, cousin-hypo and removed)

Any advice would be gratefully appreciated

Thanks 🙏🏻

[Marz]

Two months ago SeasideSusie asked you what your VitD level was and your dose. If low it could be a source if your pain. What did you do about the LOW Ferritin ? - no wonder your conversion is poor. These are things neither your GP or Endo are good at spotting and adequately treating. Sadly we have to do loads for ourselves to find wellness.

As your B12 was high - were you supplementing when tested ?

[Bellaboo2013 in reply to Marz]

Yes B12 and vitD tested to be Normal (47ng/ml) and ferrous sulphate

Diet has changed completely......no gluten, dairy, caffeine but no change....in fact worse 🙃

[Bellaboo2013]

I'll get them thanks

[bantam12]

If the carpal tunnel has been going on a while and it's now severe you need surgery, the surgeon who did my wrist told me off for leaving it so long, the damage was done and it wasn't reversible without surgery, the op was more difficult but 100% successful.

[Bellaboo2013]

That's good news as both need doing! It's been over a year and taken this long for GP referral but thankfully I have a consultation next week!!

I just needed my mind at rest as will more than likely need more time off work which means even less money 🙄

Thanks for the uplift though and roll on having hands that work properly rather than plates of meat 😂😂😂

How long was your recovery out of interest?

[bantam12 in reply to Bellaboo2013]

Whatever you do don't have both done at the same time as you will be very limited in what you can do for a few weeks, one wrist/hand out of action is manageable but two bandaged up would be impossible.

I had heavy duty bandaging and a sling for a week, stitches out at 14 days then light dressings, didn't drive for 2 weeks. The symptoms of ct were gone immediately but obviously the surgery causes some pain and I guess it was probably a few months before everything had settled.

Good luck.

[Bellaboo2013 in reply to bantam12]

wow ok thanks

[SeasideSusie Remembering]

Bellaboo2013 Do you have any more up to date results than those you posted two months ago?

What dose of Levo do you currently take?

It was suggested then that as your FT4 was over range and your FT3 below range, and that your conversion was very poor, that any further increase from 175mcg Levo could very well lead to high reverse T3, in fact it's possible you already have that and you might want to get that tested. If current results are still showing the same, you need the addition of T3 which is extremely difficult to get on the NHS now, and difficult to find an endo who is in favour of it.

How much Ferrous Sulphate are you taking? Is it prescribed? Do you take 1000mg Vit C with each tablet to aid absorption? Do you take it four hours away from thyroid meds and two hours away from any other medication and supplements as it affects their absorption? What is your current ferritin level?

Vit D here in the UK we more often see measured in nmol/L and the recommended level is 100-150nmol/L or 40-60ng/ml. Personally I like to keep mine as close to the upper level as I can. Are you supplement with D3? If so are you taking it four hours away from thyroid meds and taking it's important cofactors?

If you have a choice of endo, now that you have a referral then rather than risk wasting your time on one who has his head stuck in the sand as is guided by TSH only and attached no importance to T3, then I would email [e-mail] for the list of thyroid friendly endos and ask for feedback on the forum for any that you can be referred to.

I can't help with information about whether you can get help with topping up your income. Who decides if treatment is successful? As far as a lot of doctors are concerned if results are in range then your thyroid is successfully treated regardless of what symptoms you have. I imagine you will have to make enquiries of the DWP, CAB, benefit forums, etc.

By the gene test do you mean the DIO2 test? I think a few people have had this test and some found their conversion problem is proved with that test.

[Bellaboo2013 in reply to SeasideSusie]

I forgot to mention that I was advised by my gp to up my Levo to 200mcg and no further tests would be made for another month (that was 2 weeks ago!)

[Bellaboo2013]

Thank you thank you and THANK YOU for your response(s)

In terms of supplements...I am doing everything as per your guidelines and will contact Louise Roberts regarding endos right away.

Following a consultation and what seems likely an unsatisfactory result, I have a booked an appointment with a private doctor in Bristol who is supposed to be sympathetic (not until oct/Nov) so will keep you guys updated as she has such a long waiting list but apparently extremely good and understanding of our problems.

Thanks again x

[SeasideSusie Remembering in reply to Bellaboo2013]

Bellaboo - so as you're now taking 200mcg levo my first thought is that reverse T3 will become a problem if not already. This happened to me.

When you have your next GP tests done, post the results (with ranges) and let's see what's happening. If you still have over range FT4 and under range or very low FT3 then I would seriously consider testing rT3. Blue Horizon now do a mini rT3 profile test, which I asked if they could provide for those of us who didn't want the vitamins and minerals tested each time when monitoring rT3

bluehorizonmedicals.co.uk/m...

Of course, if vitamin and mineral testing is required then their plus Twelve bundle is good.

Venous blood draw is required for those tests, they can't be done with a fingerprick test. And it will probably be cheaper to do this yourself before seeing your private doctor in Bristol and she arranging the test.