Am I on the right track?

[inkoherent]

Hi everyone,

I've been having a bunch of medical issues for the past 10 months since having a pretty bad bout of sciatica. Since then, I've been dealing with widespread twitching (diagnosed by a neuro after an EMG as benign fasciculations), general anxiety (am starting CBT shortly) and just feeling really run-down (exhausted and weak).

On my thyroid issues, I saw a GP on 21 May regarding the twitching and he ordered a bunch of blood tests which came back with these results among others:

TSH: 0.445 (range 0.65-3.7)

Free T4: 16.2 (8.8-14.4)

B12 serum: 388 (145-637)

Calcium serum: 2.47 (2.09-2.46)

Potassium serum: 4.1 (3.6-5.0)

I only got the results a month later, and the GP (a different one) noticed the slightly high T4 levels and ordered another blood test. The results of those (taken 18 June) were:

TSH: 0.599

Free T4: 14.6

Based on these results, a third GP started me on 5mg Carbimazole per day which I've been taking for about 10 days, but since then, I've felt as tired/foggy with difficulty falling/staying asleep, if not more so. And I don't know if it's coincidence, but I've started feeling a dumb ache/numbness in my left thumb, more tremors in my fingers (especially the left thumb) and some general achiness/weakness in my body since I started the Carbimazole.

I'm thinking of stopping the Carbi for a few days and monitoring if some of the new symptoms subside, and going back to the GP in the next few days to see what he thinks and maybe get referred to an endo. But in the meantime, does anyone have any thoughts on whether my recent symptoms might be an adverse reaction to Carbi (and if so whether they will get better over time), or whether they are symptoms of high T4 that will take time to resolve as I continue on Carbi (I've read that effects from ATDs only show up after a few weeks)?

Thanks!

[inkoherent]

Oops, forgot to mention that my second blood test on 18 June also included TSH Receptor Antibodies, with the result being 0.5 (rang 0.0-1.5 IU/L). The report has a comment "specimen is haemolysed".

[Hidden]

Hello Inkoherent,

Welcome to our forum and sorry to hear that you are not feeling well.

Both tests show out of range thyroid hormones and it is disgraceful that your GP's failed to act sooner. In the forum many have experience of this and so try to offer help and support to one another.

A high TSH and a low T4 show hyperthyroism so you will need medication to slow the release of hormones.

I am hypothyroid so can not offer advice from experience of medication doses.

Do you have a goitre (swelling in your neck) and have you been tested for antibodies TSI and TPO? Graves' disease is when the bodies auto immune system over stimulates the thyroid. Usual symptoms are wright loss, palpatations and increased perspiration.

B12 should be higher and a lot of people with thyroid issues tend to supplement. It is good to have Vit D, folate and fettitin levels checked too.

Although I believe anti thyroid hormones medications work a lot quicker than those used in hypothyroidism (upto 6 weeks), I would say it is still early days as hormone levels readjust.

Hemolysis refers to the destruction of red blood cells which leads to the release of haemoglobin from within the cells. Hemolysis is usually caused by the phlebotomist not drawing blood correctly and can affect certain test results. You can ask for a retest.

I hope you start to feel better soon,

Flower007

[inkoherent in reply to Hidden]

Thanks Flower007! I am planning to ask for antibody and other additional tests the next time round, having done more research since the diagnosis. And thanks for the tip about B12 too!

But what confuses me is the extent to which my TSH and T4 are out of range - it is so much less excessive than what I read here and on other forums (in fact my second test results seem almost normal based on the ranges?) And this leads me to wonder if I should really be on antithyroid meds and whether the carbi might already have pushed me into the hypo zone. Especially since in the last week or so, some of my symptoms seem to be the ones more commonly experienced with hypo (frequently feeling cold, pins and needles, major tiredness).

This is so bewildering!

[Hidden in reply to inkoherent]

Yes it is bewildering and GP's can find it bewildering as well!

Subclinical hyperthyroidism is when TSH is suppressed and T4 is within range but yours is definitely elevated.

You could ask for an endo referral but I think it too early days. Perhaps you need to reduce dose but like I said I have no experience. I would advise you to repost question with hyperthyroidism in title for other more experienced people to comment.

Flower007

[Hidden in reply to Hidden]

Just for clarity : Inkoherent's blood work showed -

TSH: 0.445 (range 0.65-3.7)

Free T4: 16.2 (8.8-14.4)

so TSH is *low* and free T4 is *high*. But both only by a little. Of course, anything 'out of range' brings on a knee-jerk response from medicos. But still, something ain't right. And a surprising number of apparently unrelated health problems can stem from a wonky thyroid.

As Greygoose says - you need free T3 tested to get a proper picture of what's going on.

Carbi can certainly have side effects. Have you read the leaflet in the box? (Although when I do that it just makes me think I've got the lot! )

With such a slight out of range-ness even 5 mcg Carbi might be too much. You might try taking your 5 mcg on alternate days?

When asking for a new panel of blood tests do not omit Vitamin D3. That is as important as B12. And there's another vitamin you need to take with them/it to help with absorption. It's either C or K.

[inkoherent in reply to Hidden]

Thanks Humphrey. Yes, taking the 5mg every other day is an option I'm considering too, maybe after a few days of not taking the meds as a means of comparison. And re: side effects, the tablets actually came sans box/leaflet or any warnings from the doctor (let's not go there) but I have been reading online.

I'll ask for a D3 test too when I next get bloods done. I'm in Singapore where the sun is almost always out in full force, but I will admit that I don't spend much time outdoors, so I've actually been taking 1000IU daily.

[humanbean in reply to inkoherent]

To find patient information leaflets for carbimazole, use this link :

medicines.org.uk/guides/car...

[inkoherent in reply to humanbean]

Thanks! There's so much more information available on UK sites (even the NHS' sites!)

And I have to say that you guys on this forum are amazingly helpful and knowledgeable

[humanbean in reply to inkoherent]

I tried finding a specific patient information leaflet for carbimazole at the link I gave, but it sent me in circles which is a surprise. I've never found Emc to be hard to navigate before. This link looks more like what I was expecting to find :

mhra.gov.uk/home/groups/spc...

[maggi999 in reply to Hidden]

Hi Flower007,

Am I going crazy or are the decimal points in the wrong place?

Those result look ok to me - If TSH is lower than bottom of the range and T4 is higher than the top of range,then that is good isn't it??

[Hidden in reply to maggi999]

Excellent if medicated for hypothyroidism maggi999.

Unfortunately these indicate hyperthyroidism.

flower007

[maggi999 in reply to Hidden]

Oops! just reading them as someone who is hypo - sorry

[humanbean]

Benign fasciculations - I've had these. Some odd people video it happening to them and upload the videos to Youtube.

I don't have this problem very often nowadays. I can't say for certain what reduced the severity and frequency of the problem for me, but improving my various nutrients definitely had an effect. If I had to guess I would say magnesium and potassium probably improved things for me.

[inkoherent in reply to humanbean]

Humanbean, yeah the fasiculations can be a real annoyance if you're lucky, and send you into a major panic if you believe everything you read online (if you haven't started, don't).

Anyway, I've been taking 400mg of chelated magnesium per day for months and I'm still twitching away The next thing I'm trying is therapy to manage my anxiety, but I'm not sure how well that will work with the other symptoms I'm still facing.

It's good to hear that your fasciculations have bcome less of a problem though!

[humanbean in reply to inkoherent]

What I find really annoying is that when I get these twitching problems it makes the affected areas (almost always my calves) feel as though the muscles have been overworking for hours and so they feel sore and very tired. Sometimes it can take a couple of days to return to normal.

[inkoherent in reply to humanbean]

Hmm, you might be on to something there. But my discomfort in the legs feels more like they're just really heavy, not quite tired from exertion. Hmmm.

[greygoose]

Whoa, whoa, wait a minute! No-one can make any decision on those blood tests without testing the FT3. Your Test for Graves antibodies are negative, your TSH is NOT suppressed, and your FT4 is only just over-range, so why did he think it was necessary to prescribe Carbimazole? Did he at least have the sense to test the Hashi's anitbodies? You could just be on a hyper phase of Hashi's. Your symptoms sound more like vit B12 deficiency, to me. And your vit B12 is way too low - optimal is 1000.

Admittedly, I Don't know a lot about Graves, but the antibodies aren't high, so... I Don't know, just sounds like he's jumping the gun to me. If it were me, I think I would just get the B12 level up and see how I feel then. Test again in a few months. But that's just me!

[inkoherent in reply to greygoose]

Thanks Greygoose - yes with the benefit of reading (maybe too much) online I increasingly have this feeling that I shouldn't have been started on carbimazole, even though it's "just" 5mg per day. So it sounds like it's back to the doctor's I go, armed with many many questions for her.

[greygoose in reply to inkoherent]

Good luck!

[BeansMummy]

I have Hashimoto's, so have no knowledge of being hyper, so cannot comment on that.

However, I also have widespread muscle twitching, which sometimes drives me crazy. I was fobbed off for ages by my (old) GP but was eventually referred to a neurologist, and was diagnosed with peripheral nerve hyperexcitability. I also get bad headaches, and a kind of “inner buzzing”, which the neurologist thinks is related. My B12 was low, but in range, but I am lucky enough to be on B12 injections now – this has greatly lessened the other neurological symptoms I had (tingling, numbness, memory loss and brain fog), but not the twitching.

I have been told that the hyperexcitability is not particularly related to having Hashimoto’s, but that is almost certainly another autoimmune issue.

[inkoherent in reply to BeansMummy]

Yeah I'm increasingly convinced that there's an autoimmune issue behind all of this, particularly with how much mental stress and anxiety I've been through, first with the very long episode of sciatica, followed by various other discomforts

That said, there are tons of theories about what causes twitching and buzzing. My neurologist who put me through a nerve conduction test and EMG just yesterday is of the opinion that they're just benign fascinations that one has to live with (and might get better with better anxiety management). And there's something out there called Benign Fasciculation Syndrome, with many of the sufferers also reporting fatigue, cramping, exercise intolerance etc. Interestingly many of the sufferers seem to have thyroid issues too, and some believe that BFS, CFS/ME and Fibromyalgia are members of the same family of villains.

[BeansMummy in reply to inkoherent]

I imagine that all this twitchy stuff is all much of the same thing (once any very serious medical issues have been discounted) with lots of different names for it. I was offered anti-epileptic medication to control mine but, following a bit a research and advice on here, I chose not to take it (the side effects can awful). The neurologist was very supportive of me not taking it, but said that many people cannot deal with any level of twitching whatsoever.

I specifically asked if mine could be connected with Hashimoto's, as I just assume that everything is. She said that, because I am already collecting autoimmune diseases, this was another one to add to my list.

[inkoherent]

Hi everyone,

I'll be posting updates on my case at another thread I started earlier with a more descriptive title: healthunlocked.com/thyroidu...