At my wits end!

I know I haven't posted for a while but I have rather a lot to contend with and I've been trying so hard to help myself but I'm in so much pain now and feel so worn down with everything.

Recently I had a positive tilt table test and got told I have reflex syncope. It's caused by a dysfunction of the autonomic nervous system. No cures, no medication, just drink more water and avoid the situations that trigger this off....like standing in queues etc. Although I can walk, I am told my body cannot tolerate 'standing on the spot' for longer than 10 minutes at a time, otherwise I will probably pass out or nearly pass out.

My neurologist informs me the unbearable pain in my feet and legs is peripheral neuropathy and I am currently trying Tegretol. It's mildly helping in the daytime but not touching the pain at night yet. I've been given no guidance on titration for this medication and my next appointment for the neurologist is not for 8 months.

After reading about B12 deficiency, I fought to have the injections to see if that might help. I had them in the end, every other day, for about a month and that didn't help either.

Yes, I have had Type 1 Diabetes for about 12 years but I make sure I look after myself and don't let my blood sugars run high, so am devastated to be told I have two types of neuropathy.

I am on Levothyroxine for my Hashimotos and I asked the endocrinologist if he might check my T3 as I'd read about conversion problems but he refused to check that as he says the Levothyroxine is doing its job. My last TSH reading in the summer was 1.94 and my T4 was16.4.

i was actually stunned when this endocrinologist discharged me from his care because he felt I was 'normalised' with treatment. I guess the fact he feels the neuropathy is simply down to my diabetes and not treatable in his eyes and the fact I may have thyroid cancer (having yet another biopsy next Friday as last ones show cells had changed but the cancer specialist said it was too risky to take me into theatre with all my other problems, especially autonomic neuropathy) is of no interest to an endocrinologist!!!! I actually wouldn't want to see this useless man again but for him to leave me without an endocrinologist when I feel I most need one leaves me speechless.

When I told him the Thyroid Uk website recommends testing T3 he said 'Thyroid Uk have it wrong'. I left his office in tears, feeling so let down.

Months back I got the list of more useful endos from Louise Warvill but there are none round here and because I now have this standing problem, I don't think I could tackle waiting for tubes etc in London.

My nutritionist who has been so helpful, has suggested I get tested for Lyme Disease, as my problems all started at Center Parcs, just over two years ago. I did have the NHS Lyme test that came back negative then but she says the NHS Lyme tests are rubbish, so wants me to have a foreign one that is very expensive and I do think it might be worth just ruling that out.

Yes, I had Glandular Fever last year but recent re-testing for that shows that has now thankfully gone. (Well, I don't think you ever lose G.F. But I think they mean is not active at the mo').

The pain in my feet and legs is driving me crazy and I can't bear the thought that this is how my life will be now. I'm terrified this will be a precursor to amputation and I 'assumed' if I looked after my diabetes, I could avoid such things. It's hard to learn it doesn't necessarily follow.

I love our house and its location but hubby and I have been looking at bungalows now, rather than leaving it until I'm not up to moving but in all honesty, I can't face moving house right now.

Can somebody please give me some positive thoughts to take away from all this.

I have stuck some motivational statements to the inside of my kitchen cupboards and am forcing myself to try and keep doing some walks but some days it's just hard to stay positive.

Sorry to go on.

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29 Replies

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  • Please do not give up! I can totally sympathize with you when it comes to the doctors not listening and treating your symptoms. I am down to 109lbs from my thyroid and the docs say i shouldnt be in the pain i am in. Have scoliosis to the degree that my spine rubs everything and is raw yet they say it shouldnt be painful. Please dont give up on how you feel. Your pain is real and I pray you will find a doc that will help you. Please also do a ton of research and keep the search up for a competent doc. We have to believe that there are compassionate ones left and our long journey will lead to one. All the best to you!

  • Scoliosis is very painful as my older daughter will attest

    she spent months in a special form of traction at age 14 /15 which made a huge difference

    it was a home use system bought back from France by a dedicated surgeon in Oxford who was sadly killed by a drunk motorist 30 yrs ago

  • mimix2, thank you so much for your kind reply. I can tell you obviously have similar problems and your understanding means a lot. I wish you well.

  • I am very sorry to read your story. It sounds awful and for an Endocrinologist to turn you away and tell you that T3 test is of no value, so you're well shot of him. They are so 'cocky' some of them saying levothyroxine is 'doing its job'. It obviously wasn't if you were complaining.

    I took levo and I had far more symptoms on it than before I was diagnosed with a TSH of 100. Walking, stiffness, joint/muscle pain. So I can understand somewhat a little of what you've been experiencing.

    Do you have a copy of your most recent blood test for your Thyroid Hormones? With the ranges? If not ask the GP to request TSH, T3, T4, Free T3 and Free T4, Vit B12, Vit D, iron, ferritin and folate. If he wont, maybe request a private FT3 from one of the recommended labs. Some of them are pin-prick tests so you don't need to go anywhere.

    Hypothyroidism is a 'whole' body dysfunction not just one area. If not on an adequate thyroid hormone for us personally we will not feel well. I do know you have all these other diagnoses to consider as well. If we're sure you are at an optimum with vitamins/minerals/thyroid hormones then you will have to follow other avenues but I feel you've been neglected by the Endo.

    Make an appointment at the earliest for your thyroid test, fast also (you can drink water), leave about 24 hours between your last dose of levo and the blood test and take it afterwards.

    Seeing you have several problems maybe Low Dose Naltroxine will be helpful.

    hypothyroidmom.com/most-doc...

    hypothyroidmom.com/is-your-...

    "I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

    Some links:-

    hypothyroidmom.com/new-stud...

    hypothyroidmom.com/10-ways-...

    hypothyroidmom.com/sick-to-...

  • Thank you for your kind reply, Shaws. My G.P. says he is not allowed to check my T3. All he will check is T4 and TSH and because the endocrinologist wrote to him saying my levels were now 'normal' as in my original post here, I don't know how else to get it done and even if I did, without an endo who actually knows his stuff, I wouldn't know what to do with the results myself. I'm on 50mcg of Levothyroxine and now Tegretol to try and help the neuropathy pain in my legs, plus two types of insulin obviously for my diabetes.

    My nutritionist is recommending an endo in Kent, who MIGHT see me but that's a long way to travel. I'm not ruling it out but as I have another biopsy on Friday and a proper Lyme test, again recommended by my nutritionist, once those are out of the way, I WILL pursue getting an endo who is more informed about such things as T3. I really want this done because everything I've read stresses the importance of it.

  • Some labs will not do T3 if the TSH is 'in range'. You can you can get a private FT3 done if you can afford it. There's a list of recommended labs in Thyroiduk.org.uk.

    I've just looked up the medication you've been prescribed for your pain and I'm sorry you have to take that. I hope you don't have Lyme and I wonder if they added T3 to your T4 if it will help relieve your other pain which could also be due to a lack of T3. I realise things are complicated with your diabetes.

    I, too, had pain when on levothyroxine, in fact I was so stiff with muscle/joint pain. I don't now and when T3 was added it relieved a lot. As did NDT and T3 only and I hope some doctor will allow you to trial either one.

  • I think the "reflex syncope " is heaviliy connected to Hashis /Hypothyroid

    because my Hashis husband , our daughter and her daughters are all the same

    they cant stand still for long , have to lean on something or sit down or move around

    Our 20 yr old Hashis granddaughter has just had to give up her job at a café counter because she cant be on her feet like that with feeling dizzy and awful pain in her feet and legs

    If she is moving around and walking or sitting she is fine

  • Yes, I agree. I can't stand for more than a few minutes, either. Standing in a queue at the check-out is agony for me! I try to find something to put one foot up on - although that has it's draw-backs because I once put my foot up on the back of the trolley - you know how the back swings forward so that they can be parked - well, the back swung back on my foot, and it got stuck in the trolley and someone had to help me unstick it! But, yes, I know how bad it can be.

    Your endo sounds typical, frankly, I wouldn't expect much more from an endo - they think they know it all and have nothing left to learn. He is totally wrong about the FT3, best to get it tested privately. And, Don't give up on the B12. These things take time, and I'm sure it will help eventually.

    Take care, thinking of you. xxx

  • Thanks for your reply greygoose. I have given up on the B12 as my levels now show as 2,000 I think and having had the shots every other day for a month, it was doing nothing for me and the neurologist wanted me on epilepsy drugs for the P.N. Drugs are not suitable for me, personally, for the syncope.

    I have been taught techniques to deal with a syncope episode. Best is to sit or lie down and put my feet up but you can get funny looks in Tesco's at the checkout if you do that. I have been told to either clench and unclench my fists, rock on my feet or cross my legs, as though I need the loo! Personally, I prefer to just avoid queues and shop off peak.

  • I quite agree with you! Trouble is, there are always exceptions, and you never know when and where you're going to get stuck in a queue! I wouldn't have any objection to crossing my legs and rocking if it saved me falling over! Who cares what other people think! lol

  • Maybe we should both buy a tutu, greygoose....lol

  • OMG! What a dreadful thought! A fat goose in a tutu! lol

  • A fat goose would be very tasty :)

  • Ummm... not quite sure how to take that, shaws... lol

  • I meant it to be 'amusing' but I've just realised I've connected it with half of your name ;)

  • lol

    Actually, it was the 'tasty' bit that worried me.

  • Well I'd like some confit d'oie... s'il vous plaît.

  • Mmmmmmmmm Don't blame you! I love that. With pomme de terre sauté! lol

  • Mmmmmmmmmmm

  • That's really interesting reallyfedup123. I think the assumption was that my autonomic neuropathy behind this is caused by the diabetes but I am learning that 'assumptions' are quite common by medical professionals.

    Thank you for your input.

  • My eldest son had autonomic vasovagal syncope, starting at 16 years of age. It took 3 years to get diagnosed and it turned out that his heart stopped beating for 12 seconds at a time. They never discovered whether it was his blood pressure dropping which caused the heart to stop or whether the heart stopping caused his blood pressure to drop. Just as they decided he needed a pacemaker (5 years after this started) the faints stopped. That was 9 years ago. He has been fine since although had a couple of faints last year. Clemmie

  • Thanks for your reply, Barrister. I'm sorry to hear your son had the same reflex problem as me. The tilt table test is quite useful because they deliberately try and induce a faint and because I had a positive test, it very conclusively showed a particular pattern in my blood pressure and heart rate.

    I too had these problems in my early teens.....passing out when standing in the spot and the consultant told me it is common for someone with my problems to have a history early in their life of similar episodes, even though I had many, many years with no problems with standing.

    It doesn't always happen though because my mum had these problems in her youth but never had a recurrence and she's 84 now.

  • Thank you all for your kind and helpful messages. I have to get my mother to the docs and then I am looking after her today, as she is unwell but when I get more time I will reply more fully to you all.

    Thanks again.

  • You might want to look at

    lowdosenaltrexone.org. LDN has helped a lot of people with similar issues as yours. Since it's nontoxic, cheap and with few and passing side effects it's worth a try.

    Fb has groups you can join and get support and information. LDN Research Trust, Low Dose Naltrexone and others.

    Hope you get help!!!

  • That's a very interesting read. Thank you. I think I may discuss this with my nutritionist.

  • You might be intolerant of levo. I had muscle pain and massive lethargy for 18 months which stopped when I stopped taking levo.

  • I have to admit, the neuropathy in my legs has only happened a couple of months after I started Levothyroxine but the reflex syncope and other problems I had before I started it.

  • Watch today's BBC News, Victoria Derbyshire on I player or see my post today, on Menopause, Thyroid and Hormones. think I've remembered the title correctly and I've only just finished it - sorry I have short term memory problems!

  • Righty Ho. I will try and find that on iPlayer. Thank you.

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