Worsening neurological (?) symptoms - really worried

[SinkGirl]

So I’ve had a lot of health issues for many years. Already had endometriosis and was then diagnosed with ME and fibromyalgia but it really doesn’t fit. I’ve gone down the route of paying for private blood tests on multiple occasions to try and figure it out, but aside from vitamin D deficiency there’s nothing clear cut. Thyroid levels at the high end of normal, vit B12 low end of normal, nothing my doctors will act on.

18 months ago I had a strange patch inside my right knee with a strange burning sensation - a bit like when the blood rushes back after sitting strangely on your leg. Over time it has spread very gradually to both legs, knees to toes and is literally constant now. I’m starting to get the same in my right hand. I have carpal tunnel that comes and goes in both arms. A 3-4” wide altered sensation strip across my upper back that has been there for two years but sometimes spreads higher and lower. I can’t grip anything really wide (like a big jar) or thin (like peeling the film off a packet).

Right now I’ve got a similar burning tingling sensation in the middle of my face, which is new.

This isn’t even mentioning the hair loss, weight gain, complete absence of sex drive, heart palpitations, spells of vertigo etc etc

My GP isn’t listening to me - saw her a month ago and she put me on antidepressants and told me to come back in six weeks. I am not depressed, just low because I feel so unwell. I only agreed because maybe if I do as they ask they’ll agree to try something else.

I had a load of blood tests done in August by the GP - aside from low vitamin D and folate (now supplementing both) nothing showed up. My calcium is right at the bottom of the range, MCH slightly above range, B12 low in range (254) and I know some people are symptomatic at that level but getting the GP to listen is another story.

What can I do? What can I ask for next? My doctor thinks that doing private blood tests is making me anxious - no, I’m anxious because I don’t know what’s wrong with me and no one seems to know or care to help me figure it out.

Does anyone have any ideas on what I should be asking the doctor for next? They did try to refer me to a rheumatologist but the refused to see me because the GP already diagnosed fibro - I just don’t believe that’s what this is as it doesn’t explain most of my symptoms, and I wouldn’t really describe what I’m experiencing as pain.

What is your diet like? Have they checked your blood glucose at any point?

Hello Op, I have had a multitude of neurological problems recently over the past few years, all stemming from a head injury and post concussion syndrome. My post concussion syndrome symptoms were very similar to yours; tingling and burning sensations in hands, head and face, and I was initially diagnosed with anxiety and carpal tunnel syndrome. In reality, the head injury had been the true cause of a lot of the symptoms (which included severe insomia, memory problems, head pressure, difficulty reading, aphasia, and sensory issues such as sensitivity to light, sound, movements etc). I had a nervous breakdown as a result of the severe anxiety all these symptoms gave me, the constant going back and forth to doctors who just prescribed psychotropic meds, and I then became very severely anxious and had the most God awful insomnia where I didn’t sleep for a whole week.

It was really awful (sorry to witter on aboit myself here!), and no one took me seriously at all apart from one out of hours A&E doctor who diagnosed post concussion syndrome.

I had a morbid fear of taking any of the drugs I was given. I was then prescribed a potent first generation antipsychotic drug called Pericyazine, and this ironically actually gave me a real rare neurological drug induced involuntary movement disorder called tardive dyskinesia.

I’m sorry to keep going on aboit this... my point being was that it took me to self diagnose my symptoms and neurological disorder, and after seeing 5 neurologists both on the NHS and privately, I was finally properly diagnosed with the disorder. I had to really fight my corner, and my feeling is if I hadn’t been such a strong advocate for my health, I wouldn’t have got the proper diagnosis or care.

I second what others have said and think you should push to see a neurologist. It does sound like it could possibly be MS-related, but only a good neurologist can help diagnose you.

Best of luck. I will replu again a bit more after I have put my DS to sleep.

Thank you - I agree, I think my thyroid could be the issue here, I just don’t know what to do about it. All the GPs in my practice insist that if it’s normal range then it’s fine. If my TSH goes over 4 then I can at least take in the nice guidelines about subclinical hypothyroidism but until then they will not try treating it. This is why I’m monitoring my levels myself, to see if it goes out of range - my levels in my tests have been so up and down, I did have one TSH level of 5.95 but the GP then ran a test and it was 1.4. I’ve figured out from my own tests that my TSH seems to drop during ovulation for some reason - I don’t know if this is common.

Ugh, I don’t know any more. I realise it could be multiple things but I’m just not getting anywhere and I’ve been trying to get to the bottom of it for so long.

Just to add - I was told it was earth anxiety but I knew I was anxious because there was something wrong with me. My main symptoms were: tingling hands and feet, a sensation like water being poured over my head, headaches, vertigo and anxiety. Most cases of hypothyroidism are autoimmune. Have you haft our thyroid antibodies tested?

*health anxiety

I’m so sorry you had to go through that - so impressed that you managed to advocate for yourself so well. It took me ten years to get a diagnosis of endometriosis and prior to that my notes are littered with things like “psychosomatic pain”, absolutely infuriating.

Blood glucose and hba1c totally normal - my son has hypoglycaemia and I’ve checked my own blood sugars a few times when I’ve felt really unwell to see if that could be an issue but they’ve been completely normal.

Yes, my thyroid antibodies are in normal range too - highest has been a TPO of 22.8 (normal range is up to 34) but then other times I’ve been tested and they’re under 10. It’s all so confusing.

I too don’t have raised thyroid antibodies so not sure what has caused my hypothyroidism! I had a major fight in my hands - firstly to get a diagnosis - and then to get the right treatment, as I didn’t do well on thyroxine. I’m now well but needed T3 as well as thyroxine (T4). Unfortunately thyroid disease is so badly understood and treated that you have to do a lot of work yourself but Thyroid UK provided me wit the support and resources to make a full recovery.

That’s wonderful - I do believe my levels will go out of range at some point based on what I’ve seen so far, but it’s just a matter of how long that takes. I’ve printed off all the reputable info I can find but they won’t do anything.

Was your TSH over 4 when they started you on treatment?

I know lots of people end up self medicating for thyroid and b12 but it’s not a route I want to go down if i can help it.

I was lucky that my TSH was high (18), but my FT3 and Ft4 were in range - so they said it was sub-clinical and didn’t want to treat me. I had to beg for a trial of thyroxine. However, that made me feel worse! Luckily, with the help of TUK, I saw an endo who very reluctantly allowed me to try a T3/T4 combo. It took a while to get the levels right for me but I got there. I now import my medication from the USA as although I have a private prescription, it’s much cheaper for me to buy online. My old nhs GP was happy to prescribe it for me but when he retired my new one wouldn’t. I hate self-medicating but couldn’t go back to thyroxine alone.

Could you have endometriosis in different places? Have heard this could cause similar symptoms

Your TSH is too high, anything over two suggests a thyroid that isn’t working properly. You have classic hypothyroid symptoms, ahd hypothyroidism goes along with Deficiencies of B12 and D.
I went back and forth to the GP for TEN YEARS , being told my levels were normal, but if my TSH goes over two I feel rough. Eventually I was diagnosed , but I’d had years of misery. Ask them to test you for antibodies, if that had been done at the start I would have been medicated much sooner. If you have antibodies then you have Hashimotos and your thyroid will only get worse. A good GP would start you on a low dose of thyroxine, especially as you are close to the treatment margin and symptomatic.
Good luck.

Ah ok, I have seen that you have had antibodies tested ?
If you TSH was 5.7 they should have treated you. Always have it tested first thing in the morning, as it can drop through the day. You have such clear thyroid symptoms that I would be surprised if that wasn’t the problem.

Me too!

Is it worth trying the ADs?

I get the tingling you describe but drs can find nothing wrong , I too have a fibromyalgia diagnosis and have hair falling out. They thought thyroid as runs in my family but it's fine,my vitamin levels are fine too. I've just accepted it's the way it is - next step would be an mri I was told but they said it was up to me but they didn't think I needed it

I am sorry you aren't getting clear answers. Can I just give a word of caution that you need to be careful not to compare directly the private results with the NHS ones. This is particularly true if you are sending off capillary blood (from a finger prick) to the private lab whereas the GP bloods will be venous. Sometimes the normal ranges are different.

Regarding B12 deficiency do you have a sore tongue? Or a high MCV/low Hb on a full blood count?

There are other tests MMA or homocysteine which can help pick up a Vit B12 deficiency at an early stage but are very expensive

I agree with a previous poster that this could be hashimoto thyroid. This would explain fluctuating tsh and t4. Also, with thyroid stuff objectivity is a bit overrated: levels that might seem within range could give you terrible symptoms. A good endo would take that into account.

Unfortunately, it's common for women to be written off as having depression and fibro - and for a man to be properly listened to,

As a man, I was diagnosed M.E and Fibro with no tests. Fast forward 15 years looks like my M.E is Lupus and Myasthenia Gravis.

Thank you everyone - really appreciate being able to talk through all this.

I’ve been utterly convinced it’s a thyroid issue and still believe that to be the case, although now I’m wondering about B12. There’s a b12 deficiency support organisation that has a calculator on it - according to that, I have 8 out of 10 affected body systems and with my blood test results it comes out as 100% likely that I have a b12 deficiency. I know the tingling / burning could be down to that.

I can understand (to a point) not wanting to try thyroxine as I know it can be dangerous if you don’t need it. B12 isn’t dangerous though, and if it is that and it’s treated properly it could sort out a lot of the symptoms completely.

My MCV is always at the upper end of the range, looking back at my results:
2016 99 (83-101)
2017 96.6 (78-99)
2017 91.9 (78-99)

Had MCH tested at the same time, always slightly above range: 33.7, 33.7 and 32.5 (range 27-32).

These were all GP tests. Never had low haemoglobin except during my twin pregnancy when my blood results were a mess (understandably!).

All of my private tests have been finger pricks, and they do have different ranges so I’m not comparing the figures directly, just looking at where they are in range.

These are all my thyroid tests to date. Blue ones were by the GP. All done fasting in the morning. Not sure about the first three older ones, but when I checked back anything with a TSH under 2.1 was done when I am ovulating, it seems to drop them. I was so surprised by the 5.95 that I spoke to the company and they retested me and it had dropped significantly - they insisted both are right and that my levels are variable.

It does seem to be swinging up and down but not to the extremes that I know hashimotos can cause. I’ve read in some places that any thyroid antibodies at all even in normal range can mean autoimmune thyroid disease but that it’s not definitive. I thought my TPO antibodies were going to keep going up but they’ve basically disappeared now.

I am going to ask about IF antibodies - very much doubt they’ll do homocysteine or MMA and reluctant to pay for them myself if the doctor won’t accept them anyway!

Someone asked about the carpal tunnel and whether it had been formally diagnosed - no, it hasn’t. It only flares up occasionally now - started in pregnancy, now I get random bouts that are extremely painful (feels like my thumb is being ripped off even when my hand is still) but I’ve found that sleeping in a splint for a couple of nights when it’s bad sorts it out. I’m pretty sure that’s what it is.

I really hate having to do all this, I’ve got a bloody spreadsheet of blood test results FFS. GPs obviously don’t have time to sit down and go through it all, they’re just fire fighting - maybe I need to see a private GP?

Forgot to add - my tongue isn’t really sore but I do have altered sensation in the roof of my mouth if I brush it with my tongue. That’s another one of those things that I’m just used to, and maybe everyone has it? I have no idea!

You have your answer already.
Low b12 and vit D can make you feel terrible. And explain your symptoms.
Supplementation needs to be really good, not just something from the health food shop. You also need to change your diet so it doesn’t recur.
If you are vegetarian or vegan this explains low B12 so you need to change your diet.
Lack of vit D is really common especially if you don’t go outside much.

I’m already on high dose vitamin D, and I was taking good quality b12 supplements last year but it didn’t make a difference - I’m not veggie or vegan so I shouldn’t have a b12 issue. From what I’ve read it seems I need injections but my GP has already said that it’s in normal range so it’s fine.

Sorry if I wasn’t clear - I am taking the antidepressants, for about a month now. Figured I should be compliant and hope that they’ll consider other options if they don’t help (which they’re not so far)

Common for hypothyroid people to have low vitamin d, low b12 , and low iron levels. Coeliac is also common, which can cause people to become vitamin deficient too.
My best friend is also hypothyroid, and she had one of her feet go completely numb...! They were thinking of MS until she was finally diagnosed with Hashimoto’s.
I am convinced from your posts that you have a thyroid problem, the vitamin issues will make your symtoms worse.