I had Graves in 2003,, then RAI in 2009 on Levo since. I have been struggling badly since beginning of August. My body just keeps crashing sometimes in terrible pain like electric currents going through my body. I have just found out i have low lung capacity after paying to see a Private Integrated Dr so I could try Nature Throid, but that didn't help and I felt just as ill, this devastated me as I was praying it would help me live again. My chest, neck and head feel like they going explode too and i feel like I need oxygen. I feel dzzy and unwell even after eating. Many hypo symtoms. My GP's and a different Private Endo said it is not my thyroid but I know it is. My blood sugar level was 6.9 and I do not eat anything sweet except the occasional piece of fruit. Mainly veg organic meat and fruit diet.
TSH is 2.89
T4 21
T3 4.2
Has anyone had any of these symptoms and got better with extra T3.
Thank you.
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Razzydaz
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You are undermedicated to have TSH 2.89 especially when taking NatureThroid. Try increasing dose by 1/2 grain and, if necessary, a second 1/2 grain in another two weeks.
TSH is usually bottom of range or below range when taking NDT. You haven't included FT4 and FT3 ranges but people on NDT are usually optimally dosed when FT3 is in the upper third of range.
Oh I am sorry I wasn't clear those results were on 75 levo. I started NDT last Sunday until I collapsed on Thursday night. I was so frightened I went back to levo yesterday. Nothing seems to be working for me to live a normal life.
It took me 8 weeks of NDT before I started to feel well and I started on a very low dose and increased gradually over that period. I think it needs time
Your results are a little strange on 75mcg Levothyroxine. TSH is high but FT4 is close to top of range FT3 is low in range. I think you need to increase Levothyroxine dose to 100mcg which will push FT4 over range but some people do need high FT4 on Levothyoxine to deliver good FT3.
If you decide to try NatureThroid again reduce Levothyroxine to 50mcg and introduce 1/2 grain NDT. After 2 weeks stop Levothyroxine and increase NDT to 1 grain. Wait 2 weeks and increase NDT to 1.5 grains. If symptoms persist increase to 2 grains afte two more weeks. Hold at 2 grains for 6 weeks and have a thyroid function test before increasing further.
I'm sorry you are feeling so unwell. Have you had your vitamin levels tested by your GP? Vitamin B12, folate, ferritin and vitamin D? B12 deficiency has been known to cause electric shock type symptoms.
It's common for people who have thyroid conditions to be deficient in vitamins. When you get them tested post them here as it's also common for doctors to say you are fine when anywhere in the NHS range but coasting along the bottom of the range will not make you feel well. Thyroid patients seem to need an abundance of B12 to function well.
I had a really high B12 reading 853 pg/ml Nov 2016 but I was taking a supplement. As it was so high I stopped.
I have been so sick since August I haven't been able to take extra supplements as they were making me feel terrible dizzy and exhausted, as was eating.
I will try and force myself to take extra supplements. . I cannot understand why I am so unwell as my diet has always been excellent. I am now trying the AIP Paleo diet but nothing is helping.
I will insist on blood tests for vitamin deficiency.
My B12 is over 1,500 and same for my 93 year old parents and my partner. We all suffer from pernicious anaemia, but not since we took supplements. Do you feel worse than when you were taking the supplements?
What was the range for B12? 853 is not terribly high with most lab ranges in the UK it's only slightly over. Check out the Pernicious Anaemia website or forum as they advocate B12 over 500 to be sure of sufficiency.
What was your B12 before you started to take supplements? If low, did your doctor exclude pernicious anaemia?
Hi Razzy, are you saying you have been on 75 levo after RAI? That is such a low dose for someone who is producing NO hormone. I think your nervous system is having problems. I'm not sure what you should do in order to recover enough to handle the necessary amount of thyroid hormone.
Yes, that's what happens. You probably do need lots of nutrients, especially minerals like magnesium. When the adrenals are overworked they rob progesterone and I found a progesterone cream very helpful. If you don't have enough calcium which is needed for many actions in the body, your bones will be giving it up. Everything falls apart when the gut isn't working right. The first component is to breakdown nutrients in the stomach, otherwise they disappear in a way. I like unfiltered apple cider vinegar or betaine HCL or if you have a fatty meal, use digestive enzymes. At least this way you are giving your body the tools it needs heal.
Your thyroid problem is really a gut problem as almost every autoimmune condition goes back to this original source without a doubt.
The Dr recommended 1 grain split in 2 but I felt very dizzy & unwell on the first day so increased to 1 grain morning & 1/2 around 2.30 /3pm. It just didn't give me any energy though and I stated to feel unwell- nauseous with weird feelings in my head. Then on Thursday I collapsed into a shaking fit and my mouth looked strange while my pupils enlarged my daughter said.
Razzydazzy wrote about her B12 a year ago: "I had a really high B12 reading 853 pg/ml Nov 2016 but I was taking a supplement. As it was so high I stopped." So it is quite likely her B12 is now low, without the supplement, Clutter. Or have I missed the results of a recent test?
I would have thought that a year was plenty of time for her B12 to fall to rock bottom, depending on the cause of her deficiency. As well as pernicious anaemia, there are so many things that can deplete your B12, including many prescribed medicines. 5000iu is pretty sure fire for bringing it up. That's what we all use in my family, although maybe we could go down to 1000iu. The other three individuals in the family who take it all have brain injury and so I encourage them to take the high dosage stuff, in case they forget to take it sometimes. The literature indicates that high doses of B12 are not dangerous - that there is no unsafe level. See candobetter.net/node/4463 which cites the following: ""No adverse effects have been associated with excess vitamin B12 intake from food or supplements in healthy individuals, and no UL has been set."
Source: Institute of Medicine, 1998. Dietary Reference Intakes for Thiamin, Riboflavin, Niacin, Vitamin B6, Folate, Vitamin B12, Pantothenic Acid, Biotin, and Choline. Washington, DC: National Academy Press, cited by Institute of Medicine, Food and Nutrition Board. Dietary reference intakes for vitamin C, vitamin E, selenium, and carotenoids. Washington, D.C.: National Academy Press; 2000, cited in 2nd National Report on Biochemical Indicators of Diet and Nutrition in the U.S. Population, p.16, cdc.gov/nutritionreport/pdf...
T4 is good. T3 is ok, but should be between 5 and 6. Usually people can go without medication with these. However, the TSH is too high and indicating a problem. Has your reverse T3 been taken? That could explain it.
A functional/intergrative doctor will at least be able to refer you to the test. At least at my end of the world, normal GPs and endos don't take this test at all (for some very strange reason). However, I'm not sure how this goes in the UK.
Even without your Levo ranges I suspect you aren't converting the T4 to T3 well. So at the moment correcting that is important and as you can only tell theat when taking Levo then I should stay with that for the moment. It has already been mentioned that you should get Vit D, B12, folate and ferritin tested. They are the 4 things that help our Thyroid to work properly so we should look at that first. Plus we are often low in them because we have thyroid problems so most of us to some supplements. Doctors aren't very clued up in this or how to treat it but you can post your results on her and the ranges and we can help with that. Like thyroid meds we are looking for optimum levels, not just in range. Then because you have been struggling taking them then introduce them one at a time. May be your body can't cope with too many changes at one. Get good quality supplements. You usually get what you pay for so cheap and cheerful may not work or be too slow. It does take time to get these where they need to be so months nor weeks and the time depends on how low you are to start with. Taking extra T3 may help but I think without solving the problem you are just papering over the cracks. After I corrected mine I went over to NDT and apart from over dosing at the start I've had little trouble since. Since everything in the Thyroid world takes time patience is needed.
Once you are on NDT or T3 then results are read differently. TSH is suppressed and FT4 can drop but FT3 will be high in the range so it's because how our results change we cannot compare the FT4 reading with the FT3 like you can on Levo so we can't say what our conversion is like.
I feel as if my body is not converting properly and screaming out for help. It just gets even more stressful when the hospital NHS GP's say it is nothing to do with your thyroid.
I will try introducing the supplements one at a time.
I am so pleased for you that you finally managed to sort your problems out. Can I ask which NDT you take?
I had all your symptoms following a total thyroidectomy in January. I was on 150 levo and felt dizzy, air hunger, weak, muscles twitching etc . nearly three weeks on 20 t3 plus 100 levo and feel energy returning slowly plus symptoms lessening.
It would be good to get seen by a sound neurologist.your electric current pain,dizziness and tiredness fit autoimmune neurological illness.there is a good one with Irish name in Dundee.good luck
I have had an EEG which came back ok. My GP asked for a CAT scan but was refused.
I honestly believe my body is not converting enough T3 and because I keep trying to live a normal life my body shuts down saying I cannot go on exhausted.
From your blood test results albeit not showing the ranges you look like you are under medicated. 75mcg of levothyroxine does seem like a very low dose for a full replacement..
The most common things that occur with long term under treatment is low iron, low B12 & underfunctioning adrenal. Of any of these are out of wack they will need addressing for sucessful tolerance/uptake of thyroid meds.
It could be that your adrenals have been thrown by the low dosing and are struggling as they have tried to compensate for your low thyroid dose.. You might want to get a saliva test to check that out. It could be your adrenals will need a little support whilst you are building your thyroid meds up whether levo or Naturethroid.
Before taking any vitamin B supplements I would strongly recommend that you get your GP to check your B12. As you were low in this before it does need re checking. Once you are taking B12 supplements it usually invalidates blood tests and they will usually show a high reading. This does not mean you should stop taking them. B12 is not stored in the body and is excreted -bit like vitamin C. Your electric shocks feeling could be symptomatic of low B12 . The dizzyness could be low b12 or adrenals. The breathlessness could also be either or low iron or low thyroid meds. When taking B12 you should always take a B12 complex as well as B12. This is because the vitamin Bs work best together.
The integrated doctor you saw should be advising you on all of this. What did they say? Have you rang them to report your reaction to the Naturethroid?
I will start the sublingual again it did come other B Vits.
Everyone on here is so kind with all their advice.
I did contact the Dr that gave me the NDT but I missed his return call. He recommended AIP diet but I was already on that, since August.
I am wondering whether to stop work next time while I try changing to NDT, once I feel strong enough to try again. I must admit the my joints and pains were not as bad as on Levo.
Hi Razzydaz. A common cause of intolerance of thyroid meds is low adrenal function & low iron. Did your doctor check these? Adrenals are best checked with a saliva test. Stopthethyroidmadness has quite a lot on this being a cause of intolerance of meds.
This sounds like a combination of issues. How much nature thyroid were you taking. Maybe it does not agree. Finding the right NDT can be a matter of sometimes rather expensive trial and error. I also wonder if your ferritin in low as this would reduce available oxygen and lead to the breathlessness. The electric shocks sound like B12. I would suggest injections as they seem to get absorbed by everyone. It is going to take a while for you to get well. Nature thyroid although tolerated well by most people has manufacturing issues that are making it unavailable. Can I recommend DR Brownsteins book 'overcoming thyroid disorders'. It is very comprehensive and easy to read.
Problem with injections is that you have to rely on doctors giving them regularly and frequently enough, unless you self-inject, which many people do, of course. I find it hard to believe that people don't absorb the sublingual high dose B12, although I have read of this.
astridnova. I self inject and don't understand why when I used to take so much B12 sublingually, until my bloods had too high a result to measure, my B12 symptoms were not sorted until I started to self inject. It makes a world of difference to me to inject rather than sublingual but sublingually it was getting into my blood.
I get something that sounds similar. After the third time, my GP referred me to an ENT consultant (because of the dizziness) who put it down to an atypical migraine as he couldn't think of anything else. They began when I started taking thyroid meds and I've had them on both levothyroxine and liothyronine. I'm not sure whether I agree with the diagnosis - it could be right.
I think the clue is the word crash you are using - has anyone checked your cortisol levels - as when I recently went to see an endo at a well known London hospital she told me they do not give thyroid hormone now without supporting the adrenals first with a low dose of steroid - I nearly fell off my chair...............as starting on thyroid hormone without support has caused all my health issues down the line but there again I had quite poor adrenal function without realising it at the time and they certainly didn't see it either and they should have done. If you are unable to tolerate thyroid meds and they make you feel worse then the endo might be right it isn't your thyroid hormone - but may be the support I mentioned that needs addressing - can you ask your endo for a short senacten test to see what your adrenals are doing ............or it could be one of the other adrenal/sex hormones that is out of kilter - DHEA - Pregnenalone - oestrogen - progesterone - aldosterone etc. etc. - you need to be under professional care - please ask to be referred back to an endo - you might be suffering with pregnenalone steal whereby the adrenals steal what hormones they need to keep you going but it is reducing your other hormones particularly pregenanlone - the master adrenal hormone that contributes to all the other hormones......... also how about your magnesium levels - magnesium is responsible for electrical impulses from the brain down to the muscles etc. and many other important functions - I was very low on this mineral at one time and my muscles went into spasms so severe that my body would lock and one day I was at the side of the road bent double unable to get upright after I just tried to lift my leg to go up a kerb - there is a product bu Better You called Magnesium Oil that might be worth a try for you. Hope all this helps.
Hi there - you really need to impress on him that he needs to look at every angle on your behalf - really lay it on and push the responsibility back to them if anything goes wrong with your health etc. etc..................if your adrenals are low then it is imperative you get it sorted out as all your hormones will be grabbing each other and leaving you deplete...............good luck and let me know if I can help any further.....................here's to you feeling better soon.
No, I do not lose consciousness, I wish I did as sometimes it's so frightening & painful. The shaking is like a forceful pressure going through my whole body top to toe. Hypervenilating steps in too after the collapse.
It feels like I am dying ( without being melodramatic). I think my adrenals are crashing because my body is not converting enough T3 into my cells.
I have taken a couple of weeks of work to hopefully rest and I am getting all the tests for ferritin d3 b12 selenium etc.
I became very unwell 15 months after RAI. I did improve on T3 until CCG stopped it in August. I've got some of the German one but had dizziness now for the last two weeks and wondering if there is a connection. I curse the day I ever let them do that RAI. I can't afford to go private and once you are passed back to your GP there is nothing other than an annual TSH check where I live.
Gosh sounds a bit like me I am going to say look to your adrenals, low cortisol and get your B12 way up. I was having terrible electric shocks down my spine and in my brain, numb feet and bottom of legs. I have had to take 10,000mcg or 15,000 mcg Jarrows B12 to start getting rid of these. I am having trouble getting B12 shots as I was supplimenting and my bloods show high, although I have enlarged blood cells. My breathlessness was unbelieveable. PA runs in my family.
Katherine, before I was diagnosed with Graves - the day the doctor I saw clearly thought I was a total nutter and told me I needed a holiday - I mentioned that electric shock feeling.
It was the weirdest thing ever - felt like a sort of BZZZZ right through my neck and somewhere in my head. It was always a quick thing Bzzz then it was gone.
I’d had it a few times but it wasn’t a regular thing and I didn’t know when it was likely to happen, it didn’t seem to be caused by doing anything in particular either. Last time it happened was several years ago (before my thyroid was fixed) so I can’t remember exactly what it felt like other than a very weird electrical feeling that I felt right through my neck.
I also have a family history of PA - eventually got my endo to check my B 12 - it has crawled just into the lower level of ‘the range’ - she thought it was f8ne (!) so I too supplemted with B12. I take Jarrows sublingual and it goes over 1000 then I stop and it comes down again and so it goes on
Bottom line is - I’m so interested to hear about your electric shock feeling. I haven’t come across anyone who had anything similar.
Awww! I thought it can be quite common...mine travels from my spine up into my brain, sometimes just in my brain, and sometimes it takes my breath away a bit. Very weird and yes only last about 5 or 10 seconds. Sometimes I can have 3 or 4 one after each other. Your B12 is not fine Japan supplements anything under 500 and they have no dementia or such. I would get your B12's quite high darling xX
I get it in my head like a zzzzzz l can hear it although l doubt any one else can. My computer tablet makes a similar noise and have noticed some of the kids smart phones do it. Never thought to mention it till l read this. Starting B12 injections next week. Will monitor if it changes. B12 seems so crucial. I so hope you we can all get well.
That sounds like tinnitus, I get that a lot. Sometimes it is in the background other times it is quite loud.
No the electrical impulse is different, it is very sudden and like an involuntary buzz or tingle that shoots from somewhere in the base of my neck through my head, it feels very unpleasant but it doesn’t last long - I imagine it must only be there for a few seconds, it just feels very powerful at the time. People I’ve been with at the t8me haven’t realised it happened either.
I did ask the GP for the 24hr saliva test but around that time I had just seen a Private Endo who was doing a 24hr urine test. My GP said the urine test would be exactly the same as 24hr saliva. Only afterwards did I find out he was only testing for a very rare tumour on my adrenals!! I was so cross the private endo did not even tell me what he was testing for, I thought it was for my adrenals.
The 24hr urine test is a good test. I was never offered this. My endo is slowly taking me off thyroid meds before doing this test! I’ve done saliva samples x 4 and x 6. These are usually sufficient to give a clear picture of how much cortisol your adrenals are or not producing. Morning cortisol should be top of range the rest should be lower in range. However, insufficient cortisol can be as debilitating as high. I have high night cortisol which disrupts my sleep pattern and I get adrenaline rushes throughout the day. Too much cortisol at night can produce Adrenaline. A high protein snack before bed can help. Google symptoms of high adrenaline and see if it matches how you feel.
If you’ve got your cortisol results it’s worth posting for advice. You are entitled to these results so ask your endo for a copy if you haven’t already.
I’m sorry you aren’t feeling well. I had toxic levels of B6 and had similar symptoms. I also had high B12 levels. I was taking a supplement that had only 50 mg of B6 in it. Most people pee out b6. I do not. If you have stopped the supplement with B6 in it, your blood levels will come down quickly but you will still have symptoms of B6 toxicity for a while. Please look up B6 toxicity. There is a Facebook group that has been very helpful for me. I was diagnosed with B6 toxicity by a neurologist at the Mayo Clinic. Feel free to reach out with questions.
I know you have gotten a lot of advice. But just in case it could be B6 toxicity, you could check out the Facebook group called Healing B6 Toxicity with Western Research. The adminitrator, Beth, had B6 toxicty and she is extremely helpful and knowledgeable. The files section lists all over of the symptoms and sounds a lot like the symptoms you have and I had. It also lists ways to heal. I just wanted to throw it out there just in case it might help you or anyone else.
I have read through all of the postings and have nothing to add as I am nowhere near as knowledgeable as others on here, but I really do feel so very sorry for all that is happening and all that you are suffering right now, with almost no support from the medics. Sending you a big (((hug))) and I hope you will get the right medication soon so you feel a little better.
Thank you Glo42. I really appreciate the big hug! It is exhausting & stressful rying to find an answer which makes everything worse especially when you are told everything is normal!
When I was normal I could walk for miles, run without feeling tired. Maybe I will again one day. 🎅
Having any thyroid condition makes for a real roller coaster ride until the medication is sorted out. It is good to be able to share our concerns on here and have the support of so many others who struggle one way or another.
I hope that you will soon find the answer to all your health issues, but in the meantime keep posting and above all, keep focused that it can get better. XX
While I do have experience with T3 over 1 year and know how to get reverse T3 to lower without becoming dependent on thyroid medications, after having read Dr Wilson's book etc. I would like to say that the experience you are having with electrical shocks seems more like an adverse reaction to having taken medications of which there are many which compromises B6 absorption through the intestines by killing off friendly bacteria which are needed to get B6 into the body.
The other people's comments about B12 is also relevant as I came down with a serious case of neuropathy in 2002 and completely cured it by end of April 2003 and have had no problem since.
There are many medications which can do this. Metformin does it in type 2 diabetics and even type 1's which take it as it lowers B12 too low but that can ben solved by taking a high quality Multi Vitamin Mineral which also does provide the needed elements for thyroid disorders if one does not already have antibodies and a situation that has gone on for years.
The antibiotics that are more often in the fluoroquinolone class can do this to people who are not even diabetic.
The simple solutions I found was to take all sorts of supplements which is easiest done with just a high quality one where up to 8 per day would be taken if a man or 4 per day if a woman but the tablets or packets must be spread out in the day so there is always some nutrients in the blood. Any choice to take all 4 at once would only end up wasting most down the toilet as B vitamins are water soluble and only stay in the blood for up to 8 hours at the most and are otherwise eliminated.
So if you have had to take an antibiotic for some reason you might not have associated your pains with that as one might consider it a danger to have such medications on the market, and it is a problem as so many do come down with the adverse reaction, but not everyone, so they do not want to take it off the market. The simple solution is to re establish the friendly bacteria right after an antibiotic and to take B vitamins while taking it and right after. It is simple yet doctors do not bother much to explain these details.
So this could happen to anyone not just someone with a thyroid issue to deal with.
Thank you to all the wonderful people on here who have offered their stories and fantastic advice for me. I am overwhelmed by your kindness, it has helped me feel more positive especially at the lowest point in my life so far.
Merry Christmas & a Happy New Year to you all! 🎅🌲🎅🌲🎅🌲🎅🌲🎅🌲
Personally I think you should keep an open mind and have these recent symptoms thoroughly investigated by your GP to rule out other possible causes
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Have I come to the end of the road with Levo, feel awful no improvement despite increase.
planning to retry T3. Please could I have guidance on which private b/t to buy before I start? 
T3 - I am just wondering as I so often do!
