Hi all, I have hypothyroidism and PA.
I am suffering with pins and needles in hands and feet, and tongue. And various stabbings throughout my body. As well as a kettle boiling in my ears, and lightheadedness.
Do you think that I am undermedicated?.
Any help please.
Hi Mannequin 18, I am new on this forum, but I also have tinnitus, constantly, I didn't even think that it might be related to being under-dosed, but maybe this is yet another symptom! ( I am currently under-dosed and trying to gather enough information so that I can bring it to my Dr. and request to be dosed based on T3 and T4 results and not TSH.) I also noticed that I have been lightheaded (or dizzy) which I don't recall every experiencing before, perhaps another symptom!. I do not have pins and needles, but I understand that everyone has different experiences. I am sure the more knowledgeable people on here will respond and let you know what they think.
Thank you. you will find lots of info on here.
How often do you have your B12 injections ? I think you may need them more often ..
It should be every 12 weeks, but my levels are high, and GP is going to blood test me before he will give me another injection.
Am afraid your Doc is out of touch and has not read the Guidelines. Once on injections the blood levels of course will be raised. You have PA and injections are for life and should not be withdrawn. There is a Forum on HU - PAS - I would ask about it there too ... He is out of his depth so read up on the Guidelines and show him ...
I also suffer lightheaded, ocassional woozey feelings, pins and needles mainly in arms and hands (especially when holding phone to my ear or doing daily activities), severe aching and squeezing sensations in lower arms and have suffered from tinnitus for years (I often have inner ears problems although never attributed to hypo). Undermedicated could explain symptoms. What are your levels?
Hi, thank you for your reply, my B12 levels are 2000mg/L and my TSH is 0.45.
My B12 levels are high, but that makes no difference, my TSH is within range.
Watched a video the other day that suggested that all those were possible symptoms of electro sensitivity. Might be useful for you to do some reading in that area, even if you have not even considered it before.
Thank you, what is electro sensitivity?.
EMF - ask google 😊 Electro Magnetic Frequency ... big topic.
Yes I used to suffer sooo badly. I still have to be careful about crossing my legs or being in the one position too long but I have hugely improved since being properly medicated now.
I also had on/off ringing in my ears and also noise sensitivity. If the kids dropped something or the noise level rose (we’re a family of six, 4 teenagers) I would wince it was very uncomfortable.
High, yes I am like that with noise, it's so piercing.
I’ve got permanent tinnitus and seem to waken up a most every night at the moment with pins and needles in my hands, it’s definitely not easy to sleep with my elbows and wrists in a straight line.
Also just been seen in hospital this week by a specialist in mouth problems - seems I’ve got aphthous ulcers, my tongue tingles, glands under chin feel weird and recurring periods of burning mouth syndrome. Unfortunately I’m ‘within range’ for thyroid so I can’t see anything happening to bring my TSH closer to 1. Those who know me will have heard me banging on about the NHS and fine tuning.
The specialist I saw has done blood tests because it can be caused by lack of vitamins / minerals etc I think - including B12 - which I thought was impressive - B12 was ok last time I tested though so I’m not too hopeful as it can also be just ‘one of those things’
Thank you for replying. Good luck.
How frequent are your B12 injections?
Do you take a vitamin B complex daily?
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. This helps keep all B vitamins in balance
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two. Certainly only start with one tablet per day after breakfast. Retesting levels in 6-8 weeks ).
Or Jarrow B-right is popular choice, but is large capsule
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
How much Levothyroxine are you currently taking and what were most recent blood test results and ranges?
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 Thyroid antibodies are raised
Recommended on here that all thyroid blood 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, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If you have autoimmune thyroid disease (Hashimoto's) are you on strictly gluten free diet?
Hi, thank you for all that info. my B12 is high 2000mg/L I have injections every 12 weeks. my thyroid TSH is 0.45. and I take 150mg daily. I have Autoimmune Hypothyroid.
I don't currently take any other vitamins, because I don't know what I am missing.
You need B9/Folate as it works with B12 in a special way in the body. Even take a good B Complex to keep all the B's in balance ...
First step is to get GP to test folate, ferritin and Vitamin D
Did you have the Active B12 Test this tests what gets inside the cell.
Other things to mull over if hypothyroid yet within range check T3 and possibly reverse T3. Reduced stomach acid leads to lack of B12, pernicious anaemia, minerals, amino acids etc. Possibly check pathogens such as H Pylori?
As we become more clinically hypothyroid despite within range TSH on T4 monotheraphy these seemingly unconnected symptoms emerge.
I’ve found ReMag and ReMyte (Botanicahealth) by Dr Carolyn Dean to be invaluable to get the minerals 100% back into the cells quickly. Stiffness and leg cramps are alleviated within seconds. Dr Dean has a lot of free information and ebooks on her website and Magnesium Miracle is worth a read. Do your due diligence and possibly have a look at the rest of Dr Dean’s excellent products which I’ve found effective albeit expensive.
ThyroidUK have a list of specialists whom it might be worth considering working alongside personally or on FaceTime or Skype. Specialist Tests can always be posted out.
Pins and Needles really needs attention as it can possibly be a B12 deficiency and or Pernicious anaemia.
Thank you for that info.
My GP only tests TSH. and I have never heard of the other test.
I am not being treated very well by my GP.
Is your PA being adequately treated? Those symptoms suggest that it is not.
Hi thank you for your reply.
My B12 levels are 2000mg/L, my GP thinks that is too high, and is not going to give me my injections until after a blood test each time. I have told him that that is unnecessary, but he insists. I am worried that if my levels remain high he won't give me my much needed B12.
I was supposed to have a B12 on the first of April, but the nurse did not give it to me, she pretended to give it to me, { that makes me sound crazy}. Every injection I have ever had hurts like a Bee sting, but she just brushed passed my arm quickly with a sheet of paper.
That is probably why I am feeling so awful, because that means I have not had any B12 since January.
My skin is also itching, and I have had rashes, never know before.
I had an appointment yesterday with my GP, but when I went they said it had been cancelled, now I have to wait until the 4th July before I can see anyone.
I don't know why this is happening.
Have you checked your records to see if B12 was administered by the nurse?
Yes I did, and it is not there.
I would book an emergency appointment
You might want to pop over to the HU Pernicious Anaemia group for some more specific advice
Yes, thank you, I will. I am now a member of the PA society.
If you attended an appointment to be administered meds, but the nurse did not give them what did she do at your appt? I would query that asap (assuming there is nothing in your notes by a clinician informing the nurse not to administer). That is surely negligence?
Hi, I did query it on Monday when I had another blood test. It was a different nurse, and she assured me that no way would I not have received my injection. but I know what happened, and so does the nurse that was supposed to give me the B12. There is no way I can prove it. I have just been on line at the surgery and I can't get those results, only back to 5th May.
Time to do your own injections 😊 The PAS Forum will tell you where to buy. I self-inject weekly and buy OTC here in Crete ...
You have grounds to complain. I would ask for an emergency appt and tell the receptionists why. You also need to speak to the practice manager and/or complaints manager (your practice prob has the complaints procedure guidelines on their web). You can also question why, if your injection was administered it is not in your records (which it absolutely should be).
Yes I have tingling in feet and lower legs and mouth/tongue/face sometimes hands. I also get stabbing pains near my joints (not in joints just in vicinity of elbows and knees oddly). Lots of dizzy spells and lightheadedness. And tinnitus. I don’t have PA but am hypo and imho are currently undermedicated.
Pins and Needles
Pins and needles
