Ataxia and Desperate - blood test results - please comment
I am being refused thyroid treatment and advised to take up yet another Neurologists time. I have had 6 already at various stages since the start of symptoms in 2007 and none apart from the last one provided any help whatsoever. The last one said his tests revealed I was becoming hypothyroid. I have been self sourcing NDT until last summer and switched to levo which of course no longer works for me as I need T3 in my treatment. T3 works very well and I am able to work. I have been off meds since 27.12.21 to try and get a hypothyroid diagnosis. I can no longer work. I can’t walk straight, think straight and keep falling asleep.
27.1.22
TSH 4.27 (0.3 - 4.20) pmol/l
Endo said ‘very slightly raised’ and ‘repeat in 4-6 weeks as elevation is so borderline’
I was hoping for : ‘over range and requiring immediate treatment’ !
T3 3.6 no range given - different lab to the below
T4 14.05 no range given - different lab to the below
Vitamin D3 111 mmol
28.2.22
TSH 4.93 (0.35 - 4.94)
T4 11.20 (9.01 - 19.05)
T3 3.8 (2.63 - 5.70)
If anyone knows why T3 helps me as a steroid then do comment and as to what treatment is available when I cannot access T3 in the UK then do let me know
Thank you
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NessaBrainfog
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If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.
Gluten intolerance is often a hidden issue too. Request coeliac blood test BEFORE considering trial on strictly gluten free diet
No point in wasting my time with any of this if I cannot get a hypothyroid diagnosis, I’m afraid. Anyway they deny my symptoms are hypo symptoms. Apparently they overlap with several other conditions. I have no auto immune condition or any antibodies for hashi’s.
My folate, ferritin and B12 were tested recently and are within range.
supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. This can help keep all B vitamins in balance and will help improve B12 levels too
Thorne Basic B or Jarrow B Right are recommended options that contains folate, but both are large capsules. (You can tip powder out if can’t swallow capsule)
IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results
If serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.
Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption
This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.
Thyroid disease is as much about optimising vitamins as thyroid hormones
Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron
But recent research shows that no matter what we do with vitamin and mineral supplements, our bodies will revert to its natural state and pass out any excess it considers unnecessary bbc.com/future/article/2016...
So I am not sure why but having looked back on my ferritin folate and B12 records there is a distinct correlation between raising B12 levels to a lowering of ferritin and folate levels when supplementing with B12. Is there an explanation for this or is it just that all must be supplemented together, would you know? Many thanks.
Thank you, this means so much. I will be sending to my gp and Endo at the Oxford Centre for Diabetes and Endocrine Management where I was lucky to be referred and who have requested yet again the seventh neuro referral since they deny at 4.93 that I have hypothyroidism.
Technically, you are hypo when your TSH reaches 3, and in some countries you'd be treated at that level. But it's not just about the TSH, because that would imply that your pituitary is working perfectly, which it doesn't always. Hypothyroidism is about the thyroid, so they should be looking at the thyroid hormones. And, your FT3 is quite low, and that's the true definition of hypothyroidism: low T3.
Not sure what you mean with ‘If anyone knows why T3 helps me as a steroid then do comment and as to what treatment is available when I cannot access T3 in the UK then do let me know.’
T3 is the active thyroid hormone and a huge amount of illnesses/conditions are caused by low levels. Together with carbs, fats & protein it influences how nutrients are up-taken & turned into mitochondria to be utilised for energy/ATP.
Many of us have been ill for a long time pre-diagnosis and have little room for flexibility when finding our T3 sweet spot. The large amounts builder builders use are tolerated only because of the anabolic steroids they take alongside. There is no replacement for T3 and missing thyroid hormones have to be replaced to achieve well being, but supplementing selenium is known to enhance T4-T3 conversion.
Unless you have had an actual ataxia diagnosis re an MRI, etc, be aware it is commonly mixed up with the many types of dysautonomia, all which have many over lapping symptoms also overlapping with hypothyroidism as well as being caused by low thyroid hormone due to T3's essential influence on the autonomic nervous system. We have the highest expression of T3 cell receptors in our brain.
For example before diagnosis I looked drunk when I walked which they tried to pass of as POTS but it later dramatically improved with optimised thyroid hormone.
Your previous posts advise NDT had improved some symptoms. Why have you stopped? Getting a diagnose isn't a guarantee of being prescribed enough Levothyroxine by TSH obsessed doctors, and the NHS rarely prescribed NDT.
Some of us have gone down the private route and managed to have meds prescribed that are suited to our thyroid levels as opposed to our TSH, and some of us just self medicate with meds sourced from abroad.
Have you ever had cortisol levels tested?
You also previously had slightly raised calcium and PTH levels. Have you been tested for hyperparathyroidism?
Thank you for your reply. I very much appreciate it.
I have been tested for POTS by rheumatologist, I have had a brain CT scan, I don’t know about any tests for dysautonomia but I have had some nasty tests called evoked potentials and tilt table tests carried out at third tier by a Neuro Professor if that is what you are referring to which revealed nothing. Neither did local Endo tests short synacthen or 24 hr urine and some blood tests for parathyroid, high calcium or PTH.
I have seen Dr Hadjivissiliou at Sheffield Hallam for gluten ataxia since I was diagnosed with NCGIS and have IBS/low fodmap requirements and functional gut disorder. Not coeliac on endoscopy testing. Dr Hadj’s blood tests revealed that I was becoming hypothyroid.
The external signs of missing outer third eyebrow and mad hair, swollen puffy skin and huge weight gain of 2 stone were evident of course so knew it was.
GP refused to retest at Dr Hadj’ recommendation and sent me for mental health evaluation believing it to be somatic. I endured and after 3 years of wasted time when I nearly lost my job and did lose huge amounts of income I had private GP testing and was told I should be on thyroid medication as T4 was below range. As levo did not help, even tho I increased the dose, it just made me very ill, I self sourced NDT. It was what I needed. It was a miracle. I have self sourced for 6 years with NHS monitoring but due to NDT situation with no availability I needed to go on NHS treatment. Again, Levo I trialled did not work and again made me very ill, when I upped the dose.
I have since stopped medication to get a hypo diagnosis. Third tier Endo says T3 is a steroid so it will help ataxia but I need a Neuro diagnosis as she cannot explain it from my blood test results. More like the sh*#@y guidelines and Neuro have no diagnosis to give! It’s a T3 issue.
I receive annual thyroid scans due to U4 nodule and a smaller one since they can’t get an FNA from a fibrous gland.
I have taken selenium this morning which has helped, many thanks.
T3 is NOT a steroid it is a thyroid hormone, essential for life itself- the Endo is a witless clown.
Resign yourself to the fact you have to be your own advocate. This what I did when my GP made me ill through general ignorance. I had no choice but to start reading (much of the material provided by this forum). Most Endos seem no better and probably more entrenched that their knowledge is ‘king’ than GPs are.
Once I got up to speed I was able to argue my way to a full replacement dose of Levothyroxine which luckily for now works for me…..
Apparently GPs get a day or so on the thyroid. Sounds like your Endo didn’t even get that! I have been reading bits and bobs for over a year now. If you are prepared to chuck yourself at it, you would be amazed how it starts to sink in! 😂. With me, knowledge is like mud to a wall. Keep chucking mud at a wall and eventually it starts to stick. Same with me and knowledge.
Ideal way to get GP/Endo on back foot is to ask them to explain things that you know the answer to and query their answer further when they get it wrong!. I’ve never had the opportunity to take on an endo, but your sounds like a prize ‘doody’
If you click on my profile I discuss ranges and patient ping pong an analogy that explains the medical profession’s shortcomings with regard to interpretation of blood tests (essentially data). It is done in a humorous way to lighten the delivery 😊👍
Just scraping in at the bottom of a range us not enough- oh if only they knew!
It might be worth looking into gluten sensitivity as well if thyroid meds don't resolve it.
"AbstractBackground: Gluten ataxia is an immune mediated disease, part of the spectrum of gluten sensitivity, and accounts for up to 40% of cases of idiopathic sporadic ataxia..."
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Help...dazed, confused and increasingly desperate 
Thyroid test...desperate for advice
Advice desperately needed!
Desperate for help interpreting my labs.
