Hi everyone I recently have been having severe palpitations and slight chest pain I spoke to a GP at my surgery who suggested we do some bloods, initially she only wanted to test for TSH but I managed to convince her to do my T4 and T3 she reluctantly agreed I have no thyroid after having our RAI in 2016.
My results are
TSH 0.01 (0.35-5.00)
T4 17.6 (9.00-22.00)
T3 4.9 (2.4 - 6.00)
My haemoglobin estimation come back abnormal, results were 148 (115-145) but I have no idea what haemoglobin estimation is my red blood cells was also slightly elevated
It has taken me a long time to find a balance with levothyroxine and I’m hoping she doesn’t start to mess around with my dosage. I have just been for an ECG and awaiting results and I’m due to have a Novacor heart monitor fitted on Monday she seems to be blaming the palpitations and chest pains on levothyroxine but I’m unsure why levo thyroxine would just start to be a problem all of a sudden. Any helps on results would be appreciated
Thankyou x
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kazb1966
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Your thyroid results are fine. FT4 is 66.15% through range and FT3 is 69.44% through range so there is no problem with your hormone levels. Don't let them tell you your low TSH is a problem, it's the FT3 that tells us if we are overmedicated and many of us need a low TSH to achieve decent FT4 and FT3 levels.
Heart problems can come out of nowhere and doesn't necessarily mean it's connected to your thyroid medication.
Hi I did a reply at the very bottom of answers I received. I hope I have done that right? Maybe it should be that I reply individually but really not sure 🤞🏻
Your fT3 and fT4 taken together are slightly high but would not explain your cardiac problems or low TSH. I would leave them as they are. The TSH is not reflecting your thyroid hormone levels, this could be because it was suppressed for a long time. If you had Graves' it could be that you still have TSH stimulating antibodies (they cause Graves') and they can feedback to the pituitary and so suppress TSH. In any event they should disregard your TSH result as it isn't reflecting your thyroid hormone levels.
I would focus on your heart not thyroid hormone. If you have a heart problem it might help to reduce your levothyroxine a tiny bit, it might help but I don't think levothyroxine is the cause of the problem.
I am a patient not a doctor and I know next to nothing about the heart.
Was this test done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test?
For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common on just levothyroxine
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)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Thankyou so much for quick replies. I take selenium, magnesium/vit d spray, and zinc.
I fasted did not take levo that morning as suggested by you all on here (always do it that way) when I first started in levo ; years ago I tried a few brands which didn’t suit me until I went on Teva and now suits me although I hear a lot of people on here do not get on with
Teva.
As my thyroid has now been killed off with radioactive iodine I am assuming that I am making no hormones at all, having read that the pituitary gland sends signals to the TSH which in turn makes the T4/T3. I don’t really understand exactly how it all works but assuming I am relying purely on levothyroxine T4? I have hashimotos. Thankyou
I think he's saying that overall these are on the high side - if so, I strongly disagree! SeasideSusie has given you the ranges, and you are good in range and nowhere near being over-medicated. How do you feel?
Fuchsia-pink Thankyou for your reply. I understand now. I thought I had read on previous posts that people say the levels should be on the higher side to feel well which mine appear to be so I’m happy with that. I struggled for such a long time after my radioactive treatment to kill off my thyroid to find the right balance in feeling ‘normal’ however when I have felt unwell I have automatically blamed it on my thyroid or lack off or just the side effects of taking levothyroxine. At about the time I started to have thyroid problems I also hit going through the menopause but both doctors and endocrinologist always pointed the finger at thyroid. Menopause symptoms and thyroid symptoms seem to be so close together that given my levels from my recent bloods appear to be good perhaps all my other symptoms point towards menopause symptoms even though I haven’t had a period for three years. I did try to talk to a GP at my local surgery regarding HRT but in all honesty didn’t feel at all confident they really knew what to prescribe and again blamed it on thyroid. Most recently are severe palpitations and this nagging chest pain however I also have joint pain muscle pain burning feet brain fog, my body temperature is awful at night and extreme fatigue, some days just don’t feel motivated and weight gain like I’ve NEVER had. I’m sure you would agree that just looking at those symptoms it’s hard to tell whether it’s thyroid related or menopause.
Actually, given your thyroid results and my own experience with a difficult menopause I'd say the menopause drop in oestrogen levels is your problem now. It can cause havoc and it can take time to build up.
It's a whole new area to learn. If you are on FB, I recommend you join a private group called Menopause Support Network. You can learn so much just reading the files and the threads. The best website around for up to date information is menopausedoctor.co.uk. Everything you need to know is there and loads of helpful podcasts and video talks too. That's where I'd start looking now if I were you.
Both fT3 and fT4 contribute to thyroid hormone action and feedback to the pituitary. In the healthy population as assessed by your blood tests fT3 would average out at 4.2 and fT4 at 15.5. Of course everyone would vary around these figures but the pituitary tries to keep fT3 around mid-interval and TSH reflects the combined action of fT3 and fT4. So, for example, someone might have an fT3 of 3.8 and and fT4 of 16.7 or an fT3 of 4.9 and fT4 of 13.4. If on the other hand they had fT3 or 3.8 and fT4 13.4 they would tend to be a little hypo or if fT3, fT4 were 4.5 and 16.7 they would tend to be a little hyper. Of course, everyone differs but in general if both fT3 and fT4 are starting to go above or below average they may be a touch hyper or hypo.
In the healthy population the pituitary reflects the combined contribution of fT3 and fT4 and so is a good marker for overall thyroid status - even if fT3 and fT4 are in interval TSH can indicate the early signs of hypo or hyperthyroidism. The problem occurs when this system breaks down, when TSH is not reflecting fT3 and fT4 as it should. This is happening in your case, with your fT3 and fT4 we might expect TSH to be e.g. 0.5 or 0.2 but certainly not 0.01. Your TSH is not responding appropriately. Hence, your 'axis' is not working and we can't use TSH as a marker for thyroid status. This happens frequently after Graves'. Sometimes the TSH recovers after several months to a year or two and sometimes it doesn't.
The reference intervals show where 95% of the healthy population lie. The distributions (especially TSH) are slighly asymetric but most healthy people have a TSH around 1.0 to 2.0 and fT3, fT4 near mid-interval. When taking levothyroxine fT4 needs to be in the upper half to bring fT3 around mid-interval, this pushes TSH a little below 1.0. But in your case TSH is not responding normally and so should be ignored.
The fact that your fT3 and fT4 are a little higher than the average person is not something to worry about, there are complex reasons why you may need this. I don't believe this slight elevation (from the average) would affect your heart.
Perhaps “taken together” means tested at the the same time? They are well balanced and not over.
If you use blue reply button immediately under post you reply to the responder (they automatically get notified) if you reply at the bottom of replies in the text space you post on our own thread.
Yes, all members can see the entire contents of the tread & every reply. It just so members get notified on their own replies. You can also “mention” a member to notify them. Use the @ icon where you typing and the name of the person. Matching names are listed. Pick the right name and it will appear in blue, they also receive notification. kazb1966
If you go on the Thyroid UK website there is a list of symptoms for hypothyroidism and I do believe some of what you have described above to be signs of under medication.
Your feedback loop is broken as you have had RAI thyroid ablation which is generally a treatment option for Graves Disease, though you do say you have Hashimoto's , but either way, these are both AI thyroid diseases though Hashimoto's ceases when there is no thyroid gland to attack, whilst Graves Disease is for life.
It is essential that you are dosed and monitored on your T3 and T4 levels and not a TSH :
T3 and T4 should be balanced in the ranges, which they are, but maybe you need a dose increase in Levothyroxine to take both T3 and T4 slightly higher through the ranges and reduce certain symptoms you describe above.
Primary hypothyroidism caused by RAI is said to be more difficult to treat as the gland is slowly burnt out in situ and there isn't an actual timeline when this is complete as all bodies react differently to this toxic substance.
It is known that RAI trashes vitamins and minerals, and ferritin, folate, B12 and vitamin D all need to be at optimal levels for Levothyroxine to work effectively and successfully convert within the body into T3 which is the active hormone that the body runs on.
T3 - Liothyronine is said to be about 4 times more powerful than T4 with the average person using about 50 T3 daily, just to function.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3 + trace elements of T1, T2, and calcitonin so as you will see you have " lost " your own thyroid production of T3 which represents around 20% of your overall wellbeing.
The conversion ratio of T4 into T3 is 1 / 3.50 - 4.50 T3/T4 : with most people preferring to come in under 4 and if you divide your T3 into your T4 your conversion ratio on Levothyroxine is coming in at 3.59 :
Some people who haven't a working thyroid can get by on Levothyroxine only, some people simply stop converting the T4 into T3 at some point in time, and some people simply need both T3 and T4 thyroid hormone replacement.
Personally I think if there has been a medical intervention and the thyroid surgically removed or ablated with RAI that both T3 and T4 should be on the patient's prescription for if, and probably when, both hormones will be needed to restore wellbeing and give the patient back a level of wellness that gives them back " their you " :
I have Graves Disease and had RAI thyroid ablation but found overtime Levothyroxine stopped working as well it had done previously, for me, and having been refused both NDT and T3 on the NHS I now self medicate and am much improved.
Thankyou for such a detailed reply. I had no idea that hashis ceases once the thyroid gland has gone. I had follow up scans after RAI back in 2016 and it was confirmed it was completely dead. I also had no idea that levothyroxine could eventually stop working, that fills me with dread! No chance of getting T3 from the NHS. The Dr who gave me the RAI thought it may be Graves that caused my hyper state (treated with carbimazole for 2years with no luck) then my last Endo said it was Hashimotos Auto immune disease. I wish they would all sing from the same hymn sheet
Many people after RAI cannot manage on just levothyroxine
You might need small doses of T3 prescribed alongside levothyroxine
But FIRST step is to get all four vitamins OPTIMAL
Frequently with Hashimoto’s (or Graves’ disease) we need to be on absolutely strictly gluten free diet
You don’t need any obvious gut symptoms
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported
In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned
Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.
Only make one change at a time.....starting with getting vitamins tested and supplement to bring to GOOD LEVELS
palpitations and this nagging chest pain however I also have joint pain muscle pain burning feet brain fog, my body temperature is awful at night and extreme fatigue, some days just don’t feel motivated and weight gain like
Burning feet is usually peripheral neuropathy caused by low B vitamins
Night sweats low B12
Chest pain low iron/ferritin
Get full thyroid and vitamin testing done privately via Medichecks or Blue Horizon
Sorry if I confused you - Levothyroxine doesn't stop working, but people can stop being able to convert it :
Well, if you had Hashimoto's Disease you shouldn't have been on Carbimazole and definitely not lost your thyroid this way.
We are where we are, and living without a thyroid can be a challenge.
Optimal ferritin, folate B12 and vitamin D will help maintain your core strength and help optimise the conversion of the T4 thyroid hormone replacement.
A full thyroid panel including these essential vitamins and minerals would be a good idea so to rule in or out any supplements that maybe necessary.
I still take thyroid hormone replacement, but Natural Desiccated Thyroid which contains all the same known hormones as a humans gland. It is pig thyroid dried and ground down into tablets referred to as grains and contains trace elements of T1. T2. calcitonin and a measured dose of T3 at 9 mcg and a measured dose of T4 at 38 mcg per grain.
It might cause concern to say levothyroxine stops working although many Graves' patients find it no longer works for them. Sorry about the semantics! What I think happens is that patients find they no longer benefit from levothyroxine like they used to, the levothyroxine still working as it always has.
I could speculate a possible explanation: -
As well as stimulating the thyroid to secrete hormone TSH also promotes T4 to T3 conversion. During hyperthyroidism TSH is suppresed and if this goes on for several months it can 'down-regulate the axis', that is the pituitary no longer secretes as much TSH as it should. An additional aspect is Graves' disease is caused by TSH receptor antibodies that stimulate receptors in the thyroid to make more hormone. These antibodies pretend to be TSH. Since these antibodies look like TSH they also promote T4 to T3 conversion, so although TSH may be very low (or zero) the antibodies will do the conversion stimulation that the missing TSH would normally do. So the patient does fine on levothyroxine.
About a year or so after RAI or surgery the Graves' antibodies decline. From then on there is no TSH and no antibodies to promote T4 to T3 conversion leading to reduced conversion and the onset of symptoms. So, at this stage levothyroxine 'stops working' and the patient needs some liothyronine. This is my hypothesis of what happens and it seems perfectly reasonable. Certainly something is happening and I haven't seen a better explanation.
Another helpful member suggested that once my thyroid has gone (due to RAI) I no longer have hashimotos disease so with no thyroid and no hashimotos I’ve no idea what I medically have now
I had Hashi, Graves and RAI in 2013. Since 2014 had always palpitations. Several cardiologists said that levo do this. Last week i found an endo who gave me t3. Now i am on t4/t3 and i hope all this will gone soon...
Like jimh111 said you may still have the TRAB antibodies and sometimes the Graves may come back. There is an article about that:
Oh wow another test , think that Will be like getting blood out of a stone from GP, if I managed to persuade them to test for this what does this tell me exactly that I definitely have Graves’ disease and not hashimotos. So confusing when one dr (that gave me RAI) mentioned Graves and endo says Hashimotos . Honestly it’s no wonder brain fog is so common and I would mention a completely different endo just laughed at both of those!!
Can I just add, whether you have Graves or Hashimoto's since you do not have a thyroid any raised antibodies of proof of both, or either, doesn't change the treatment options.
Mainstream medical do not understand how to control or reduce, the antibody component of either disease and once first tested to give a diagnosis of either or AI thyroid disease simply follow the relevant guidelines and procedures.
I was diagnosed Graves in 2003 and given RAI thyroid ablation in 2005 :
I was fine on Levothyroxine for several years until around 2013/14 - details on my profile page if interested :
I purchased Elaine Moore's first book Graves Disease - A Practical Guide thinking maybe that Graves I had received treatment for had come back again - only to read it never really went away and that it seems to be a stress and anxiety driven autoimmune disease.
Elaine Moore has Graves and went through RAI thyroid ablation in around the late 1990's and finding no help with her continued symptoms and ill health, started researching this poorly understood and badly treated autoimmune disease herself.
Elaine has now become somewhat of an authority on all things " Graves " and has a world wide following on her website, and researched much into the AI component of thyroid disease for which mainstream medical have no answers.
I now manage lingering Graves, thyroid eye disease ( caused by the RAI among other things ) and hypothyroidism and since switching to both T3 and T4 thyroid hormone replacement I am much improved and have my life back.
I also supplement adrenal glandular as RAI is known to be taken up by these glands and I do need to supplement ferritin, folate, B12 and vitamin D on a daily basis along with my Natural Desiccated Thyroid.
Antibodies wax and wane - personally I wouldn't waste my time finding out whether or not you now have Graves or Hashimoto's as you are post RAI thyroid ablation and dealing with the life limiting symptoms of hypothyroidism unless optimally medicated.
I did read through your profile this morning and couldn’t agree more with your very last paragraph. Get RAI and go live your life is how I feel. Funny you should mention eye disease as the day I say with Dr who saw me prior to my RAI I asked him about RAI affecting eyes as I had read something on here and he completely dismissed it. Trouble I have is I read the replies on here for which I’m really grateful but feel so overwhelmed and although I don’t consider myself to be a stupid person I just don’t get it sometimes. The eye disease frightens me. I recently went through a period of feeling like glass (gritty) was in my eyes and my vision is slightly blurry but that’s when I don’t have my glasses on or I’m feeling tired. I guess at 55 maybe it’s just ‘my eyes’. Given my thyroid results appear to be roughly where they should be and that my T4 seems to be converting to T3 relatively ok I was thinking my symptoms but just have been menopausal but now I just don’t know. Obviously I’ve no idea if the palpitations are thyroid or menopause or a bit of both. Chest pain I had no idea until I posted on here. My usual GP who I could book to see pre-Covid always put his hands up when he really wasn’t sure about the next step and was always happy to work with me and listen to what I had read on this site whereas now we are going through Covid you don’t get a choice as to what Dr calls you back so when I called the other day re-the chest pains I got a very snotty doctor that was only interested in my TSH. It really was only when I stood my ground that she agreed to test T4 and T3
Well, you've started to get better by simply coming on here and sharing some of your upset - very many of us feel similar - as you will see above as there are over 114K members of the charity, Thyroid UK, who support this amazing forum.
On the Thyroid UK website you will find so much information and also private companies who run the appropriate thyroid blood panel and vitamins and minerals.
Start building vitamins and minerals where needed, and don't worry, as once with the results you just post them up on here with the ranges and you will receive considered opinion on anything that needs to be actioned.
Don't worry - simply start by reading other people's Q & A and it will all sink in despite that brain fog which we all have had and totally " get it " .!!!
Just bought some funny enough but not sure they are preservative free. Are the preservatives harmful to the eyes. Do you have a suggestion to which I should buy?
Preservative free means you can use them as much as you need and there will be no build up of product to block your glands.
If with preservatives, these can build up and block the tiny glands at the base of the eyelash, and then that causes other issues, commonly referred to as blepharitis, as was my experience.
There are many products to choose from, some you may be able to get on prescription.
As long as without preservatives it all becomes personal, and you may find over time that you may need to switch products.
There are some like single dose phial water droplets and at the other end heavier, greasy substances more suited to overnight use : I found I had to resort to wearing prescription glasses as my contact lenses became too uncomfortable to wear.
I recognise the first set of letters and think that stands for Hypromellose which is found in most eye ointments - I can't comment - maybe contact the brand in you are concerned.
Sadly I had to rely on the doctors with tests at the beginning of me funding lumps and being hyper for 2 years. Ironically that’s when I felt my best! I honestly don’t think the first endo was interested in anything other than giving me RAI and even pushing surgery! Hindsight is a wonderful thing. I appreciate all your replies Thankyou
Thankyou very much. If my TSH should be ignored why on earth is that the only thing the GP was ‘happy’ to test.
I’m gonna try and read through your reply a couple of times to seem if my brain can understand. I’d like the confidence to be able to throw this info at the GP.
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