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After being stable for a good few years, (thanks to the great people on this forum) I managed to drop the ball with my thyroid and have spent the last year getting back on track.
My profile shows the details and all blood tests done since last November.
In the middle of feeling very unwell with my thyroid, end of January, I had a neurology appointment linked to the Dupuytren’s disease in my right hand which is clumsy. Alongside that I have rotator cuff problems and tendonitus in my right hip. I explained these along with my current thyroid problems to the consultant but he thought I was showing "subtle signs of Parkinsons". Sadly, the only way to prove I have this is to take medication and see if things changed.
So, I concentrated on getting my thyroid right first and have seen huge improvements in the tiredness/brain fog etc over the summer, still a way to go though. The only symptom still causing concern is muscle and joint pain.
I held off starting Parkinson's medication until 3 weeks ago, but I haven't noticed any improvements and have felt very unwell on those tablets on and off.
Has anyone come across this scenario? The Parkinson's medication is very hard to deal with, especially when I have doubts and am fairly convinced this is part of my thyroid problem.
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Joat_the_cat
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Your folate and B12 need a bit of work. The usual recommendation is a B complex that helps keep all the B's in balance. This B complex has all the right vitamins at a not unreasonable cost for 90 days supply. amazon.co.uk/Liposomal-Soft...
These? If you mean the link I posted we have good reports from people taking them. The ingredients are comparable to Thorne as well.
The NHS B12 is a serum B12 which is quite different to the active B12 that Medichecks does. It's better to go by active B12 showing whats actually able to do something for you rather than serum.
Your ferritin looks good as is Vit D.
When you did the blood test did you leave 24 hours between your last dose of Levo & blood draw? If you did then you may be over replaced as FT4 above range.
Thank you, I will order these, I prefer softgels. Yes, I didn’t take meds until after the blood draw, the high FT4 is a bit concerning, I am on 125mg levo daily now, having increased from 100mg 4 days, 125 3 days, so I could drop the meds a little going forward maybe.
ok, well, your FT3 was still pretty low at that time, so wouldn't be surprising if you still had symptoms.
Also, your ferritin is low. And given that your CRP is high, your ferritin is probably even lower than that result in reality because inflammation falsely raises ferritin levels. Your vit D and B12 are also below optimal. So, still quite a lot to sort out before you can say that your symptoms are 'nothing to do with thyroid'!
What time of day was the blood draw for that test?
I was a bit confused by the NHS versus Medichecks results on B12 honestly, I do take one daily.
Well, they weren't the same tests. Medichecks is an active test, meaning it measure the amount that is available for your body to use. The NHS is a serum test that tests the total amount of B12 in your blood - available and non-available. So, the Medichecks one is the best to base supplementation on.
So, what exactly do you take? Just a B12 tablet? Or a B complex? Methylcobalamin or Cyanocobalamin?
That is not a good supplement. It contains folic acid. Methylfolate is better absorbed. And it doesn't contain enough of anything to treat a deficiency. Just taking the RDA is like trying to fill a bucket with a hole in it. You need more than the RDA.
C-Reactive Protein (CRP) 4.680 mg/L (0 - 3) 156.0%
Folate - Serum 10.7 ug/L (8.83 - 60.8) 3.6%
Vitamin B12 65.8 nmol/L (37.5 - 188) 18.8%
Vitamin D 99 nmol/L (50 - 250) 24.5%
Ferritin 170 ug/L (30 - 650) 22.6%
I'd be looking at the thyroid function before considering Parkinsons!
Your nutrients are too low....you've had excellent advice re this...they need to be optimal to support thyroid function/ conversion
Your T4 to T3 conversion is very poor causing over range FT4 which long term has the potential for causing cancer issues..
Your FT3 is miserably low which can cause numerous health issues
For good health almost every cell in the body needs to be flooded with T3 by way of a constant and adequate supply.
FT4 and FT3 should be roughly approaching 75% through ref ranges...
40.5% is on the low side.
I know nothing about Parkinsons but I think your original feeling that your thyroid function was impaired was worth pursuing. The improvements you achieved seem to underline this!
Part of medic's remit is to listen.to and work with patients and to advise.
Not to dictate. If you feel that something is wrong don't be " pushed" into doing something you are uncomfortable with....listen to your body.
I'm clearly not a medic....but I doubt this medic is well informed.
Suggest you improve nutrients, ask to be referred to an endo who might prescribe T3 and get a second opinion re Parkinsons.
all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Once you get all four vitamins optimal if Ft3 remains low likely to need T3 prescribed alongside slightly reduced levothyroxine
Aiming for both Ft4 and Ft3 Approx 60-70% through range
List of thyroid specialists and endocrinologists who will prescribe T3
Hi I have hypothyroidism due to not having my thyroid removed and I take thyroxine..I am at the moment awaiting blood tests ...
I also have a rotator cuff injury to my right shoulder and I dislocated my right elbow at the same time .. i also have bursitis on my left shoulder and two collapsed discs in neck on spine..
I too experience muscle pain and uncontrollable use of my right hand of which shakes and I find worrying ..
But my doctor has put this down to nerve damage because of my injury..
I do need an operation to be truthfull but I am frightened to have it because of a the trauma it would cause ...
Hope my reply helps as I worry too about parkinsons and mnd as my brothers partner started with neck and arm muscle pain and she is now in bed and cannot move with mnd bless her...
Thank you for replying. Oh that all sounds really painful, I feel for you! Physios helping me get on top of the shoulder but not much to be done with Dupytrens as it always comes back 🙄 MND is the most horrible disease! I worry about that too!
OhJust want to add to your specific post that b12 deficiency can cause these issues - both yours and your sister-in-law's. I could not carry anything on one side and my shoulder had constant issues. After years of this, it all disappeared with b12 shots, - almost instantly. Not saying that is either of your issues but I would be giving it a try. Note I do not but some can have what is called a functional deficiency with b12, meaning that the reading is in the normal range. Google more on that if in the normal range or pop on over to the PAS section on here. All the best.
Hi, hesitant to add in a comment cos its a different situation but I had a bad time with neurology about 5 years ago. They weren't willing to consider possible B12 deficiency for some motor symptoms in my legs and instead told me I had cerebrovascular disease. I had a horrid time where one neurologist was trying to get me to take statins, then nerve medication after a botched lumbar puncture, then aspirin. Results of all this was they could tell me that I didn't have MS or anything else inflammatory. I refused treatment and my case was sent to Stroke Services who said the cerebrovascular disease diagnosis was a pile of rubbish.
My point is to get a second opinion; unfortunately I think I had a consultant who was trying to make a name for himself in some way.
Don't be and thanks for the info, its all useful! What a nightmare for you. I always believed everything coming from doctors/consultants until my thyroid kicked off. I will be looking for a second opinion if they persist, I'm hoping symptoms will start to decrease once I am moving towards optimal, vitamins wise!
Hi I had burning/tingling in the soles of my feet as one of the symptoms that lead to my hypothyroidism diagnosis which has never gone away. The GP wanted to rule out Parkinson's and MS and asked me to have a brain MRI. It wasn't pleasant but it ruled both out, it might be worth having one to get a definitive answer.
That’s really interesting because the consultant told me the only way to confirm Parkinson’s was to take medication and see if symptoms improved, in my case nothing seems to have changed!
Hi Joat_the_cat
I agree with your feelings re thyroid problem.
Also, your situation is bit of a coincidence with my late father who had Parkinsons all his adult life (but only diagnosed in his 70s due to his previous coping strategies/no diagnosis) and that developed into Alzheimer's and premature death at 76yrs.
He was also diagnosed as Vit D deficient in his 70s.
In hindsight, and from everyone's experiences written on here, I reckon he experienced a thyroid storm when young (when he nearly died) then slipped into hypothyroidism and simply learnt to deal with it without medical care/medication. -In those days there wasn't much choice.
From the little I know about Parkinson's medication, it works for a while until the body becomes inured to it and then dosage has to be increased...as with all the side effects.
I agree with you on getting your thyroid sorted out.
Since being medicated for hypothyroidism, I don't have the chronic pain I've had all my adult life.
Previously for pain, I used to swim at a local heated swimming pool to take the edge off for 24hours. That could be a short-term solution for your pain until your thyroid is stabilised.
Thank you for the information, I’m sorry to hear about your dad, I know I couldn’t cope without medication, but the struggle to get it optimal is such a thing! My mum had Parkinson’s but much later in life. It makes me wonder how deficient she may have been in vitamins all along. She had B12 injections at various times and always said they helped!
Yep, from majority of peoples' posts on this site along with personal experiences, think it may all be linked. -The vitamin deficiencies, Parkinsons, thyroid etc.
You need to be extremely cautious taking Parkinson's Disease medication (levodopa/carbidopa) if you don't really need it because it can produce all manner of very nasty side effects, especially in the longer term.
There is no cure for the disease and the medication merely relieves the "motor" symptoms such as shaky hands. In my view you should only take this medication if you are sure that you have PD and if the symptoms are already significantly affecting your quality of life or ability to work, etc.
It is true that one way to diagnose PD is by taking levodopa/carbidopa and seeing whether the symptoms go away, but it doesn't sound as if you have the typical PD symptoms. A "clumsy hand" is not the same as a hand tremor, and only the latter is a symptom of possible PD. If your symptoms are in fact related to another condition or drug side effect and that condition improves then the doctor could mistakenly attribute the improvement to PD and put you on Parkinson's medication for life.
I have seen this first-hand in a close friend who, although having none of the common signs of the disease (no tremor, no fixed expression, no rigidity, no slow movement) was "diagnosed" as having PD by a "pull-back" test. The doctor stands behind you, puts his hand on your shoulder and suddenly pulls you backwards, noting how quickly you recover your balance. As my friend has chronic back pain and a stooped posture, he "failed" this test and was put on PD medication at the age of 55 when he had no symptoms at all. From that time on he steadily went downhill and suffered all manner of horrible effects from the drugs. Now, at the age of 70 he is bedridden and has a team of carers. He has no real quality of life, but still has no tremor and no fixed expression! We often wonder what his life would have been like if he had not started medication when he did.
I hope that this helps your discussions with your doctor.
Thank you Paul, that is certainly helpful in my decision to stop taking the medication now, after three miserable weeks with no significant change in anything. I’m sorry to hear about your friend, that is awful for him!
As a further note, Levodopa/Carbidopa should have effect within a few hours, so you don't need a long-term trial of this medication to know if it's relieving symptoms.
This was mentioned by the neurologist at my appointment, he said I should see some changes within an hour or two! And backed up by the Parkinson's nurse my sister spoke too also, which has been very confusing for me, making me very doubtful when nothing seems to have changed.
Your folate level is very low. I had low folate earlier in the year - not as low as yours. I was getting all manner of symptoms including terrible brain fog and lack of brain power - like I imagine Alzheimers is. I take 400 mcg of methyl folate and slowly my symptoms have got better.
I personally don't take the B complex. I did try it once and it didn't suit me. I wasn't keen on taking large amounts of the other B vitamins when I hadn't been tested. I knew that my folate was low and also B12 a little on the low side, so I focussed on them.
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