I've had a mixed year health-wise and overall a few bad years with wrong diagnosis and tests. To explain, I was diagnosed with cerebrovascular disease a year ago following an MRI. I refused to take statins or even aspirin (as I had a bad reaction to it). The neurologists revised this diagnosis to potential MS, as I am weaker on one side than the other, have shaking of one leg and had a slight stumble when walking. They then carried out a second MRI and a lumbar puncture in June 2018. I apparently have holes in my brain, or demyelination, but not MS or any inflammatory condition. It later turned out my wee brother has the same condition.
I had a really bad reaction to the lumbar puncture (I've had one 5 years ago and it wasn't pleasant but recovered after a week) however this one left me with severe pain and swelling in my back, numb eyes and ears and face, intermittent numbness in legs - at points I thought I was dying, getting paralysed, and was told to rest completely, not do any exercise. I had about three months of worry and fear over that, then my neurologist did a spinal MRI and told me I was fine, and to return to normal exercise, however I saw the letter he sent my GP which said that all of my symptoms were psychosomatic and he prescribed me Imipramine and told me it was for increasing pain tolerance. I asked at the time about contraindications with levothyroxine and liothyronine and was told there were none.
My recent thyroid blood test results - October 2018
TSH 0.54 - I haven't got the range, but last test was 0.02
Free T4 - 12.00 (range 9.00 - 21.00)
Total T3 - 1.2 (range 0.9 - 2.5)
I am on 100mcg of levothyroxine and 20mcg of liothyronine.
My vitamin D levels are good - 146 nmol in spring this year.
B12 - 745 approx
Folate is always at the bottom of the range and I haven't had my ferritin tested for a while but the last time, it was good.
I was trying to get an increase in T3 over the winter as my T3 levels go down, but they're not keen as 1.2 is within the range. I'm planning to go and see my GP soon and argue/get referred back to endocrinology.
Is it worthwhile to take the Impramine? I am on 20mg (the neurologist had told me to raise to 75mg but I didn't want to as it increases constipation, and I don't want to be on this long-term) It seemed to help with the pain in my back and the facial numbness has gone, but it was starting to go away right before I started these meds.
I've not had much help from GP/neurologist at all, and it has really dented my confidence in the medical profession (admittedly it was quite low before this!).
The other unexplored route is B vitamin deficiency - I read somewhere ages ago that thiamine deficiency can cause things like this. Hoping someone reads this and it resonates with them.
Thanks
Helen
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helen_m
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You are a poor thing right enough and I am very sorry you've had to undergo all those awful experiences plus the anguish.
They are all so smart diagnosing us with something we may not have at all.
They should test your Free T3, as that is the most important I believe, because it is T3 (liothyronine) which is needed in our millions of T3 receptor cells. Your FT4 isn't optimal. It should be towards the top of the range. If they haven't checked thyroid antibodies ask for these as you may have an Autoimmune Thyroid Disease called Hashimoto's but treatment is the same. Going gluten-free can help reduce the antibodies which is the cause as they attack the thyroid gland until we're hypo.
I am not medically qualified and have hypo which was undiagnosed. I am fine now so I hope you, too, will be able to improve your condition.
I was also diagnosed with something I didn't have but not as bad as what they've diagnosed you with.
Any blood test for thyroid hormones have always to be at the very earliest, fasting (you can drink water), and allow a gap of 24 hours between your last dose of hormones and the test and take afterwards. I have read that if we take T3- it should be a 12 hour gap but I've not done so yet - I take T3 only.
Levothyroxine is T4. T4 is an inactive hormone and has to convert to T3.
I believe most on this form have lost confidence in doctors/endocrinologists as they seem to only take notice of the TSH and not the patient's clinical symptoms.
I would also go by my own instinct as sometimes that works very well.
I hate that they say we're fine as blood tests are 'in range'. We don't want 'in range' we want optimal, which is a TSH of 1 or lower and a FT4 and FT3 in the upper part of the ranges.
Vit D, B12, Iron, ferritin and folate also have to be optimal.
All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24hours prior to test, delay and take immediately after blood draw. This gives highest TSH and lowest FT4. (Patient to patient tip, best not mentioned to GP or phlebotomist)
on T3, make sure to take last dose exactly 12 hours prior to test
Is this how you did this test?
If so......Some of us find we need to slowly increase Levo after adding T3
Your FT4 level is very low. Personally I need it higher than that (around 17-19)
Like you my Levo was reduced to 100mcg when T3 was added. But after a few months I increased it back up slowly initially to 112mcg and retested 6-8 weeks later. Result was slight increase in FT4 and FT3. Repeated increase in levo up to 125mcg which again after 6-8 weeks improved FT4 and FT3 and was how much Levothyroxine I was on before adding T3.
Do you supplement B12 as it's at good level?
Many of us find we benefit from a good quality daily vitamin B complex, one with folate in not folic acid
Ideally you need folate tested FIRST
Also get ferritin tested
Do you split your T3 or take as one dose?
Again some of us need split doses. Others seem fine on just single dose
Sorry I wasn't clear. I was diagnosed with hashimotos 5 years ago, I think the first time they did the anti TPO test, the result was over 1000. I had a second antibodies test about 2 years ago and the antibodies were down to 450. I've been strictly gluten free for about 4 years.
I have never managed to get them to test my free T3 so going to buy a Medichecks test when I have some money.
The blood test results above were first thing in the morning, fasting, drinking water only, and it had been 24 hours since I took the levothyroxine and at least 12 hours since I took the T3.
I split my T3 dose - - half first thing in the morning with my levo and the second dose around 4pm.
I've been on levo for about 4 years, and then levo and liothyronine for 2 years. Initially I was very ill as they reduced my levo by half when they added the T3 in, then they raised it back to 100. I had thought that the free T4 levels went funny when T3 was in the mix?
So I possibly need a raise of levothyroxine as well as T3?
Its so confusing!
I can't take a B complex unfortunately as biotin gives me bad pains in my feet, like can't walk bad pains.
Thanks SlowDragon, I'll give that a shot. I do take individual B vitamins - it's just expensive. I need to wait a wee while til I can get some more B1. And maybe B6
Hi you have certainly had a really hard time. It's totally unethical and possibly illegal for you're neurologist and GP to be saying you're symptoms are psychosomatic in a letter and then telling you they are giving you medication for pain. If they believed it was psychosomatic they should have told you. If I were you I would change GP's. I think you are the only person that can decide whether to stay on the Impramine or not. I hope things get better for you. Lola
I had a doctor's appointment yesterday and he said he believed that the neurologist was trying to cover all the options. He supports me coming off the impramine. So hopefully will feel a lot better soon. Thanks
I believe that your symptoms are caused by low b12. Even though b12 deficiency is potentially very common with Hashimoto's, the medical profession don't think to carry out other tests, other than check the blood serum level. Absorption problems can cause vitamin deficiencies and play a role in thyroid disease.
Do you have any blood results for b12 before you started your supplements? You're legally entitled to a copy of your blood test results. As you have been supplementing with b12, that blood result is now falsely elevated. There are other more accurate tests that can be carried out, including the MMA urine test.
You mention your brother. Does pernicious anaemia run in your family? Depression can also be caused by b12 deficiency and is actually another neurological symptom, others include walking and balance problems.
There's a very good video on YouTube which details cases similar to yours.
I've tried to add it in to my reply but it's not behaving. It's entitled "Diagnosing and Treating B12 deficiency".
You need to go easy with vitamin B6 as high doses can cause neurological symptoms in itself.
There will also be more information on the pernicious anaemia site of HealthUnlocked. You could do a separate post and/or search key words for previous posts.
I had tests, including MRI but nothing was found. It wasn't until I researched B12 deficiency and that it causes gait problems that I attempted to get treatment through my GP. As I had been supplementing, they refused a trial of b12 injections as my level was within the range so I had to start self injecting. My neurological symptoms improved very quickly.
I've tried telling my doctor about possible B12 deficiency for ages, and gave up and started taking it myself. I was vegetarian for 20 years and didn't know about b12 and seriously deficient and iron deficient. I've been eating meat for 5 years now and feel better, but I thought it could have been that. That's why I started taking B vitamins.
It's a real eye opener. I wish that every GP and relevant consultant could watch it. I've just read your reply to vocalEK, your vision problems again could be b12 related. I hope you get to the bottom of what has been happening. So much is linked to gut health and how well we can absorb. I've ate a varied diet all my life but still having all these issues. GPs will try and blame it on being vegetarian but that's just one aspect of it all.
My GP is going to test for pernicious anaemia pretty soon. I talked more to my wee brother and he thinks it was B12 related and has been supplementing B12 and B vits for years. Thanks for all the information
Impramine is a tri-cyclic antidepressant. This is a class of medications that Best Pills - Worst Pills says should be avoided by older patients because of "anticholinergic effects." I was on another one, amitriptyline for about a week some time ago. Hated it. Made my resting pulse go up to over 100 pbm. I had been sleeping about 12 hours a day, and being on this pill increased that to 16 hours a day.
Side effects of anticholinergic medications include dry mouth and related dental problems, blurred vision, tendency toward overheating (hyperpyrexia), and in some cases, dementia-like symptoms.
When I went back to the doctor who prescribed it, he told me I had to stay on it for at least 6 weeks for it to work. I went home, cried my eyes out, then got mad. I phoned the office and demanded to see a different doctor as soon as possible. My new doctor was very smart. She took my pulse, then told me, "I'm sure we can do better than this."
They tried to put me on amitriptyline first but I couldn't handle even the starting dose of 10mg, as it zombified me completely. Imipramine is supposed to have fewer side effects but I'm unhappy at being suckered into new medication.
But thankyou, I couldn't work out why my vision had gotten suddenly worse! It's really blurred! I need glasses for driving as I'm short sighted but I was starting to think I was going to need to wear them for everything! I'm definitely asking to stop this stuff!
I've got a doctor's appointment in two weeks. I'm going to try and get a raise of levothyroxine and going to try and get tested for pernicious anaemia. I'm fairly sure they've got me down as a hypochondriac though
I had a doctor's appointment this morning and success, he is going to raise my levothyroxine by 25mcg, and after that he's going to raise my liothyronine to 30mcg. Thanks so much for responses, I wouldn't have thought of asking for a raise in levo (turned out the actual free T4 result was 11.6 not 12.00 so he supports a raise). He also agreed with me about the imipramine and is happy for me to reduce that and come off it. I said I was going to give cbd oil a shot.
He is also going to do full thyroid tests, B12, antibody for pernicious anaemia, folate, iron etc in 6 weeks.
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