I have been having a weird year health wise and was wondering if anyone had any advice.
January: Noticed numb feeling in my finger when I picked up a mug. Had a couple fainting spells. Went to doctor, blood test, I have hypothyroidism/suspected Hashimoto’s.
I have a few blood tests and check ups in between. I don’t have another fainting spell. My numbness only worsens. They put me on iron tablets to see if it helps (apparently I’m anemic and nobody noticed before, despite me having it tested many times before, which doesn’t fill me with confidence), it doesn’t help. My nails look a little healthier.
For a while I’ve been waiting for an MRI appointment (covid delayed it). Had it a while ago and am now waiting on results, however my sister who is a neurologist (sadly in a different country) thought I should get both my brain and spine checked, but I’m pretty sure they checked my brain only?
I feel like they’re not going to find anything and then just dismiss me. The numbness has made me feel awful over time, like I’m going to lose control of my body if this keeps up. Recently my legs have started to get worse which is frightening. My neck and shoulders are bad now too. Actually there’s just lots of numb areas... (when I say numb it’s only partial numbness I do still have some feeling although it’s getting worse). I’ll admit I’ve cried over being hugged and realise arm stroking feels wrong.
I’m terrified I have something horribly wrong with me. I’m 25 and otherwise in good health, BMI of 19. Am just waiting for MRI results...just had a blood test recently that showed my iron and thyroid issues are stabilising. Is there something relatively benign it could be? I’ve had so many blood tests already. Can it be fixed? I’m an artist so if I eventually lose fine use of my hands it’ll be awful. Should I be acting pushier to my doctors? I don’t want to be a bad patient.
Any advice would be GREATLY appreciated.
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meowzart
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ah yes I forgot to mention, they did test for B12 and folate. The GP that took up my ‘case’ and spotted my iron deficiency ordered it. They also checked for celiacs. I want to ask them for the test results as they messed up with my iron deficiency but it’s so difficult to communicate with my practice right now due to Covid!
Can you not ring them, or email them and tell them you need to know as a matter of urgency? Because it it is low B12 the problem then it is urgent to start supplementing now. Or get further testing, as the case may be. If you catch B12 deficiency early on, you can reverse it, but not if it goes too far. They should not be using Covid as an excuse to neglect other patients now, as the peak is over.
ah that’s a good point! They did tell me my B12 was on the higher end of the range, but of course without seeing the numbers I don’t fully trust them. think I will email them as they’re pretty good about responding to them
They were actually going to do a 24 hour Holter and an ambulatory blood pressure test on me but since the fainting spells went away I suppose they figured it must have been the thyroid? Do you think it’s worth bringing it up with them again?
As long as you are polite Dr . Has no reason to think you are being difficult . It’s not easy making sure they are doing what’s needed . Keep on being assertive !!! Draining but worth it .
How much levothyroxine are you currently prescribed
Bloods should be retested 6-8 weeks after each dose increase
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Have you got test results as advised to do three months ago?
You are legally entitled to printed copies of your blood test results and ranges.
The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results
UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.
In reality many GP surgeries do not have blood test results online yet
Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.
Important to see exactly what has been tested and equally important what hasn’t been tested yet
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
I haven’t received my blood test copy yet so I don’t know, I don’t think they did a full panel. I think the one I usually get is generic it just says Levothyroxine sodium on it
Just testing TSH is completely inadequate. Essential to test TSH, Ft4 and Ft3
Very important to get blood test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test.
Is that how you did your test?
You obviously need B12, folate, ferritin and vitamin D tested too
What vitamin supplements are you currently taking?
Brand of levothyroxine
Different brands of levothyroxine are not interchangeable
You need to look at the name of brand on the box
Once you find a brand that suits you, best to make sure to only get that one at each prescription.
Watch out for brand change when dose is increased or at repeat prescription.
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
I have Hashimoto’s and for years Ive had tendon inflammation all over my body. It could be that your tendons are swollen and impinging on your nerves. I think full MRI CT on your head neck and spine is a great idea just to rule out anything else. Thyroid antibodies test can highlight inflammation and others like PV factor. Theres also things like ankylosing spondylitis and other arthritis related conditions. Having one autoimmune disorder makes you more likely to have others. You might benefit from sports massage to help with any trapped nerves, tendon swelling, trigger points etc but I would check with your doctor first to see if they allow it as its deep tissue. Have to be after lockdown that one though!!
I also have tendon issues everywhere- and carpal tunnel in both hands. I've had cortisone shots in both shoulders and one wrist and had amazing results- Just hope they last a while! Also have osteomanipulation on occasion which feels great AFTER it's done- not so great during.
I was lately diagnosed as having thyroid problems (was hiper and now hypo and awaiting scan of thyroid). I was prescribed carbimazol. Within a short time of being on these meds, I started to have numbness in my fingers and my thumbs started clicking. My GP told me that it was nothing to do with my thyroid and ordered tests for arthritis. The results came back negative Because of COVID19 my first consult with the thyroid specialist was over the phone. I told him of my problem with thumbs (now wearing splints at night to stop them clicking and causing pain. I don't have full movement in them anymore). He told me that it was most likely the tablets that was causing it and changed the tablets to Tirodril. He didn't seem surprised that I was having problems like this. I am now starting to feel the same issue in one of my toes and it feels like my ankle is starting to act up too!
Not 100% sure that numbness and thumb pain is to do with thyroid issue and tablets but I have a strong suspicion that it is connected in some way. Maybe it is the same for you. Hope you get to the bottom of it soon.
GPs are notoriously weak in the specialist knowledge for thyroid related disorders from my experience. I think you should push for a referral to a cardiologist or neurologist because your livelihood depends on it.
You mention fainting spells and peripheral neuropathy. There are a number of causes and I cannot diagnose which one of course, but I do recommend that you do as others suggest and get up to date bloods done including vitamins.
Just a first guess, but I suspect you may have a bit of tachycardia going on and low blood pressure. Obviously you need to check this when having a dizzy spell (you could ask to borrow a bp monitor or purchase a portable one online). It could be P.O.T.S. which my daughter had been tested for along with low thyroid and low adrenals - quite common in younger women. (The woman who started the 'Deliciously Ella' range of snacks also had P.O.T.S. at your age. ) You don't mention hypermobility in joints which would suggest it, but Ehler's Danlos Syndrome links P.O.T.S with neurological issues (below).*
Look this up, because treatment is available. You must keep well hydrated if you have P.O.T.S and take extra mineral electrolytes.
Alternatively, if it's neurological.... then you really need some scans done.
My mum has very weak arthritic hands and has nerve damage in her arms. She is on a lot of prescription meds, but has found that putting Magnesium lotion on her hands does loosen them up and makes it easier for her to handle things safely. (Magnesium is very good for neurological function along with b12, folate, p5p, iron and zinc).
Peripheral neuropathy can result from a MTHFR mutation, which means that you may lack the enzymes that help you process standard folic acid, B6 or B12 (MTHFR mutation in methylation) resulting in neuropathy. You need to be cautious about standard serum test results and look on the PA forum and ask for help for the gold standard tests they'd recommend as your symptoms could suggest B12 deficiency in the spinal fluid. The solution may be B12 injections, elimination of all artificial folic acid and B6 from diet and supplements to be replaced with more natural forms of B12, folate and B6 (p5p). In fact, taking the 'wrong' forms is likened to building a jigsaw but replacing the pieces with ones that fit, but actually belong to a completely different picture.
*This is because these conditions are also associated with gut issues and malabsorption leading to PA ...
Hillwoman has very usefully pointed out and helpfully added the proper tests.
Well, there you go then... could be Ehlers Danlos. Maybe you could start a new post and ask if anyone here has it and can recommend what to do.
I know that it is linked with P.O.T.S and tends to occur with gastric issues and I'm certain that it's also linked to methylation problems as well, which has the unfortunate effect of causing neuropathy (low b12 and folate in the spine and nerves).
I thought I'd respond to confirm the suggestions here. There are several possible causes of your symptoms and they all need to ruled out. Time to be very assertive with your GP practice, while remaining polite, of course. Be prepared for an unfavourable response: well-informed patients are rarely received well, but that is no reason to back down. Hold on to the knowledge that you are right to pursue every possible explanation for your distressing symptoms and deteriorating health.
In my own opinion, a full B12 and folate panel is really needed at this point. I had very similar symptoms at your age and they were allowed to deteriorate until I suffered permanent neurological damage. A change to a more enlightened GP led to a diagnosis of pernicious anaemia (an autoimmune condition) after a delay of 15 years. After diagnosis, however, it was not treated correctly, so I wasn't much better off.
If there is any problem with gastric malabsorption (common with thyroid disorders) then B12 uptake is likely to be a problem. You may also, or instead, have a problem with B12 metabolism at cell level. That is why I suggest a thorough private test panel that is not likely to be done through the NHS, even in normal circumstances. Try the Viapath lab for the easiest and most cost-effective single panel, though you could collect the same group of tests through other labs, like Medichecks and Blue Horizon.
This is what I suggest: Total B12; Active B12; Folate; Methylmalonic acid (MMA); Homocysteine.
I'm no expert in any way but something just struck me. Is there any chance you could have any Repetitive Strain Injury - Carpal Tunnel type thing? When you said you are an artist, I thought it may be something to look at. All your other symptoms could be unrelated. Just a thought.
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