First time I post in Thyroid, as I am usually in Parkinson’s Movement Section.
I was diagnosed with Parkinson’s Disease in Aug. 2017 at age 55. However, dopamine replacement (levodopa and or mucuna pruriens) seem to worsen my symptoms, especially stiffness. So, not taking any meds for a few months now.
After recently reading that Hypothyroidism symptoms are very similar to mine, I asked my GP to get tested. Here are my results:
TSH 2.05 (0.35 - 4.50 mUI/L)
FT4 13.8 (9.5 - 23.9 pmol/L
FT3 3.8 (3.5 - 6.5 pmol/L)
I can’t get an appointment with an Endocrinologist before October.
I am wondering if anyone ever got similar numbers as test results and/or if anyone understands what they mean.
My list of symptoms is very long but my most important started oct 2016 (worsened considerably since):
- Muscle weakness of left leg after a few minutes walking (limping) or exercising
- Muscle weakness of left arm/hand doing any chores for a few minutes
- Stiff toes and fingers on left side (almost not moving at all by now)
- Hair lost
- Constipation (major)
- Slowed hearbeat a few times a week
- Exhausted after a few hours at work (office work)
Normal weight, eating healthy and have a good living environment.
Parkinson’s was diagnosed by neuro looking at me for a few minutes. No concrete/scientific test available, so I am told… Saw 3 neuros, all said the same and all prescribed Levodopa Carbidopa…
Thank you in advance.
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Hi there. I am sure others here will give you much more insight into your thyroid markers than I can. To me they only seem very slightly off kilter towards the hypothyroid end and you wouldn’t be diagnosed or treated with these. Apart from having a suppressed TSH mine are very similar to yours and this is about 16 years after being diagnosed and treated for Hashimoto’s Hypothyroidism.
However I do have similar symptoms to the ones you describe and also resting tremors - and I’m 55.
So this is what I’ve so far been diagnosed with: Hashimoto’s, Rheumatoid Arthritis which was then changed to Sjögren’s Disease and small fibre neuropathy everywhere, sensory ataxia, autonomic dysfunction including severe constipation, early stage chronic kidney disease (blood in pee), hypertension, Degenerative Disc Disease with herniated discs, probable IgA Vasculitis.
Due to being under a neurologist (an expert in PD) who diminished the impact of all this on me, I’m now having to wait for a second opinion on the cause of my weakness and tremors. So I looked up movement disorders as part of autoimmune diseases yesterday and read that Parkinsonism (as opposed to Parkinson’s Disease) can be a recognised feature of autoimmune diseases such as Sjögren’s and CNS Lupus and is often misdiagnosed as Parkinson’s. So it might be worth looking this up if Levodopa hasn’t had any impact and you don’t feel confident in your diagnosis. 3 neuros, from my own experience of 2, could still get this wrong.
Parkinsonism can apparently often be more severe in rapid onset and progression than PD so it could explain your issues if you do have an as yet undiagnosed autoimmune disease?
I think you need further testing. Your results are strange. You also need antibodies - TPO and Tg antibodies - and nutrients - vit D, vit B12, folate and ferritin.
Your FT3 is very low, your FT4 not much better. But, your TSH doesn't really reflect that. There could be a couple of reasons for that, but you need those other tests. Your doctor probably won't do them all, so would you consider doing them privately?
It would be a good idea to get full testing privately, because you cannot get a good idea of what's going on from just one set of tests. So, repeating those you've already had would be good.
What time of day was the blood drawn? And were you fasting?
Hi Goose. Thank you for your answer. Yes, would do the tests privately but I doubt I can. In Canada, you need a doctor to prescribe tests (unless you know of resources I don't? which would be great ! ). The blood was drawn at 9:30 A.M. and fasting.
I got a few other things tested May 29, 2018. The ones that were outside of range are:
- Leucocytes 4.2 (4.5 - 10.8 x10 *9L)
- Mean platelet volume 10.8 (7.0 - 10.0 fL)
- Monocytes 0,112 (0.10 - 0.090 v. relative)
- Eosinophiles 0.068 ( 0 - 0.050 v. relative)
- Cholesterol 5.53 (3.20 - 5.20 mmol/L)
The ones that were near the limits are:
- Lymphocytes v. absolue 1.30 (1.30 - 3.50)
- B12 : 140 (139 - 651)
TSH was also tested on May 29 2018 and was lower at 1,806. But I read that dopamine lowers thyroid results and I was taking Levodopa at that time (May and June 2018).
I'm sorry, I didn't realise you were in Canada. No, I'm afraid I don't know anything about testing in Canada.
B12 : 140 (139 - 651)
I think we have a potential answer to a lot of questions, there. Didn't your neurologists test your B vits before pronouncing their 'diagnosis'? B12 needs to be at least over 550 to avoid neurological damage. Did they test you for Pernicious Anemia after seeing that result? I know it's just about 'in-range', but that doesn't mean anything. It's far too low.
Marz , come and talk to us about B12, please.
Your cholesterol is slightly over-range. That could very well be due to the low T3. So, whatever you do, don't accept statins!
Hi Goose. No. Neurologists did not do any testing at all. Just diagnosed Parkinson's by examining me and then prescribed levodopa carbidopa and pushed it even though it was making me worse...
I will start taking B12 supplements and see if I get any improvement. I will try to get all private testing you suggested. I found a few companies that seem to say they can ''bypass'' the system on the required prescription to get tests made. If deficiencies, will I be able to treat myself with supplements or will I need an endocrinologist to prescribe meds?
No, don't start taking supplements yet. You need to be tested for Pernicious Anemia, first. Marz will tell you all about it when she gets up in a few hours.
You need an endo to prescribe hormones but I think vitamins and minerals can be bought on-line? I'm afraid this is new territory for me, I don't know how things work in Canada. But, if you can get private testing done, that would be great. Don't take anything until the tests are done, or you will skew the results.
Just typed a long reply and lost it ! - gremlins at work here in Crete ! Received an alert from greygoose so will do my best to help ...
A B12 result below 500 can be the cause of neurological symptoms as detailed in the link below ... scroll down in the link to view. It is not just a Vitamin Deficiency - as B12 is involved in the myelin sheath that protects ALL nerves.
Also click onto the heading FILMS in the Menu and watch the videos just to see how serious B12 Deficiency is. Poor Dr Carr was at deaths door before they realised it was B12 Deficiency - yes the doctors did not know. Also the Film - could it Be B12 ? - with Sally Pacholok and a book by the same name. Sadly Docs go by ranges theses days and fail to look at the patient and consider clinical symptoms. My B12 was around the 300 mark for years as I was taking a B complex so the results were skewed and I suffered spinal issues. I now inject weekly sometimes twice !
Your blood test result includes both bound and unbound B12 and only around 20% is available to be transported to the cells where it is needed. So that makes your result even lower. Also test for Folate/B9 - which works with B12 in the body in an important way. Do you have gut issues ? I would also test for Ferritin - Iron and VitD - if these are all low in range it may indicate an absorption issue. A Full Blood count would be useful too.
Also have MMA - a urine test - and Homocysteine - if both are raised then this will indicate B12 Deficiency at a cellular level ...
Pernicious Anaemia is an auto-immune condition whereby the Parietal Cells lining the stomach are attacked by anti-bodies. These cells produce Intrinsic Factor that bind to B12 molecules in food in the stomach - this enables it to be safely transported to the Terminal Ileum ( where the small bowel joins the large bowel ) so it can be metabolized and transported back to the liver for storage. Sadly testing for Parietal Cell anti-bodies and Intrinsic Factor anti-bodies can often throw up false negatives on more than one occasion. So take a look at the Pernicious Anaemia website and see if anything resonates ...
The above link is British - but they are the Guidelines laid down for the treatment of B12 and folate Deficiency ( rarely read ! ) You will see that the very first point is - to treat according to the clinical signs ( not the blood test ) You can also read that the treatment for neurological issues is an injection of B12 every other day or three times a week until symptoms stop improving. Now this seems to be the stumbling block with many GP's. Many patients have to resort to buying B12 injections on-line and self injecting. I am able to buy OTC here in Crete - along with 3 syringes for under 5 euro - so what the problem is in the Health System - one can only ponder. Big Pharma cannot patent a vitamin and so the myriad of symptoms can be treated with various money making drugs.
Hello Marz. Thank you very much for all this info. I carefully went through the Pernicious Anaemia website. I must say that my primary symptoms don't match. However, I will certainly try very hard to get all of the recommended testing done in order to get a clear picture of what is going on, and if my thyroid is involved.
Thank you for your reply. I'm not sure I understand: I do have b12 deficiency symptoms but not Pernicious Anaemia symptoms. I plan on supplementing with b12 after getting the tests recommended. Are you saying I should pursue the Pernicious Anaemia lead even if I don't have symptoms? Tks
I'm not sure what you think the difference is between PA symptoms and B12 deficiency symptoms. Given that PA leads to B12 deficiency, I would think they're the same. You should at least get tested for PA - better safe than sorry!
I wouldn't delay getting the tests and supplementing too long, if I were you. The neurological damage can be permanent.
For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12
Private tests are available. Thousands on here forced to do this as NHS often refuses to test antibodies or vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.
All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances are very common with Hashimoto's too, especially gluten. So it's extremely important to get TPO and TG thyroid antibodies tested at least once .
Personally I pay extra to get private blood draw, but used to do finger prick test in past. Just pop it in the post straight away after blood draw. Processed the next day and results emailed to you
Always do test early in week, early morning and post from a main post office or pay extra for special delivery next day
They rarely have a problem. Results are very reliable
Unsuccessesful so far in finding private lab testing, I have an appointement with GP next Tuesday to ask for testing recommended above. In order to "fight" adequately, I want to make sure I understand WHY these tests are needed:
TPO and TG Antibodies to see if autoimmune (Hashimoto).
TSH , FT3, FT3 I understand, but TT4, not sure I can fight my point with GP...
Vit D, folate, ferritin and B12 also for Hashimoto? I have been reading on this Forum and I think I understand that reduced stomach acid could cause malabsorbing vitamins? I have been taking Pantoloc, an acid blocking med, since 2013. Maybe that's all what is wrong with me...
I also went on reading your problem with vit D. A while ago, a parkinson member had told me he had gotten good results with vit d massive dose. I tried up to 2000 mg a day and after a few days, got an enlarged, stiffer thumb... and it never resolved. I wonder if same issue as you.
Anyway, the more I read up, the more I think I don't have PD...
Looking at your very low B12 ...this is the prime issue
Thyroid may improve once you address low vitamin levels
But testing both TPO and TG thyroid antibodies is good idea to see if underlying issue is autoimmune thyroid disease (Hashimoto's)
Low stomach acid is very common, especially as we get older or especially with hypothyroidism, and has virtually identical symptoms to high acid
We see hundreds of hypothyroid patients on here inappropriately treated with acid blocking medication. (Proton pump inhibitors - PPI's) Resulting in even lower vitamin levels
However you must not just stop suddenly any acid blocking meds. Have to reduce incredibly slowly/put other protocols in place
If you search low stomach acid on here you will see hundreds of posts
Improving vitamin B12, folate and all other B vitamins with a good vitamin B complex and B12 injections or sublingual B12 lozenges is probably most important
Then retesting vitamin D - supplementing if necessary
Then retest thyroid and vitamins again in 3-4 months
I got GP to prescribe all of the lab tests. So far, only Folate result is in. I am worried the lab didn't do the proper test.
My GP wrote ''Folate (s)'', I guess ''S'' for Serum on his lab request. The results indicate Folic Acid. Do you think the wrong test was made? Thank you
I agree with Greygoose and Marz that your B12 is very under and this is the likely cause of your Parkinsonism. You most probably need injections rather than oral supplements.
I don’t know the normal range in Canada but I’m guessing this is under range so your GP should at least be willing to test for pernicious anaemia now?
I would ask ASAP and, if for some bizarre reason, they are not willing to run the tests Marz is recommending then by all means go down the private route. Once you are properly treated for Pernicious Anaemia then all your other levels will probably correct too.
This has given me food for thought actually because my B12 levels were over a third above range last time and since I stopped supplementing I’ve developed a resting tremor so I plan to ask for further testing too now.
I've heard Genova labs mentioned often in the US for home testing kits, but I think they also cover Canada - maybe have a look at them?
Looking at the wording on the website, it does say only approved healthcare providers can order the tests, but if so, I reckon you could arrange the tests via an approved nutritionist/functional medicine practitioner or similar, who will be more open to your wishes (although you'd probably need a consultation, which is an extra cost).
I think it would be worth getting your antibodies tested. I had hypo symptoms, but the doctors tests showed nothing. When I did a private test, we found antibodies, which explained my symptoms. The symptoms can be helped with diet and supplements though.
Hello Loueldhen. I actually read her protocol and saw her video lecture a few months ago. I gave it a try by changing my diet to include lots of cruciferous vegetables: broccoli, kale, spinach, cabbage, etc. After a week of eating cups and cups of these, my symptoms worsened. In the last couple of weeks, reading into Hypothyroidism, I realised these are to be avoided. But I am sure they are of great help for Multiple Sclerosis and even Parkinson's, Alzheimer's, etc. Thank you.
Sorry to hear that. I'm agnostic about the 'cruciferous vegetables' thing. I understood if they were cooked they are ok for hypos. I took more 'bone broth' messages from her than vegetables but it was a long time ago.
Hi Nat. Thank you for the reference. I had written Blue Horizon two emails a few weeks ago in order to get TSH Ft3 and Ft4 tested without a prescription, and they had not answered me. I had figured they were just not legit and went on to ''beg'' a GP to prescribe them to me: indeed, it felt like pulling teeth from him, but I got the prescription... With the precious info I got from this post, I searched again and see that a few private labs do mention they can provide a GP referral if one wishes to pay for private testing. I am starting to think they just don't answer written requests as they leave a trace (it is indeed illegal). I will try calling on the phone on Monday. Tks
I think we all have been sceptical and anxious about being conned/ripped off when we start going down the private testing and self medicating route. Just do your research. Unfortunately we often have to take matters into our own hands as gp's just aren't great when it comes to the thyroid and vitamin and mineral deficiencies. Many here use the UK Blue Horizon postal blood tests and find them very reliable. Good luck, really hope you get to the bottom of your symptoms xxx
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