I have been going through hell for the past 5 months, due to, what I can see as an incompetent medical system.
They have diagnosed me with Sub clinical Hyperthyroidism, w/associated anxiety.
My symptoms are nervousness, no appetite, loss of weight, tremors, palpitations, brain buzz, lightheaded, muscle twitches/pain, insomnia, hot/cold flashes, blurred vision.
TSH is low (.215) .45-4.50 mclU/mL
FT4 is in the normal range (1.20) 0.82-1.77 ng/dL
FT3 is in the normal range (3.10) 2.3-4.2 pg/mL
rT3 is high (33) 8-25 ng/dL
T4 is normal (8.2) 5.5-11.8 ug/dL
D3 is (36) >30 NG/ML OPTIMAL RANGE
B12 is in the normal range (354) 200-900 pg/mL
Iron is in the (low) normal range (94) 50-212 mcg/dL
Ferritin is in the (low) normal range (65) 30-300 ng/mL
Prolactin is low (3.8) 1.8-14.4 ng/mL
FOLLICLE STIM HORMONE is (low) normal range (3.8) 2.0-17.7 mIU/mL
LUTEINIZING HORMONE is in the normal range (4.2) 0.9-10.6 mIU/mL
Testosterone is (low) normal range (270) 165 - 830 NG/DL
Cholesterol is high (257) 25-199 mg/dL
HDL is good (47) >40 MG/DL
LDL is high (193) <130 MG/DL
THYROID STIM AB, (22) <140 % baseline
THYROID PEROXIDASE AB(1) <9 IU/mL
These are from late October
I am only taking propranolol.
I am going mad, these symptoms are too much.
Any help would be greatly appreciated.
DanteNXS
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DanteNXS
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I am sorry you are suffering so much and not getting medical support from the doctors. I am hypothyroid so cannot help but hopefully someone who is hyper will respond soon. I noticed they haven't tested antibody levels.
I am giving links from Thyroiduk.org The first might be the most useful (I am looking at it from a hypo viewpoint)
The one most widely used is Propranolol, either 10 or 40 mg two or three times a day, according to need. Even with extensive use there are very little either short-term or long-term side effects. Many doctors have found that a combination of an anxiolytic and a beta-blocker, in really small doses, works better than high doses of either by themselves and may control mild hyperthyroidism for extended periods of time.
Are you saying that the use of an anxiolytic and a beta-blocker, will stop all of these side effects? I am very weary of anxiolytic and anti-anxiety drugs, and have heard that even small doses can have withdrawal issues.
I am not medically qualified DanteNXS and the quote is from Thyroiduk's website.
However, I see you've already tried anxiolytics so maybe asking GP to increase beta-blockers would be of benefit:-
The one most widely used is Propropanol, either 10 or 40 mg two or three times a day, according to need. Even with extensive use there are very little either short-term or long-term side effects Propropanol
The above excerpt is also from Thyroiduk.org and I see you are taking 20mcg twice daily.
I am currently taking 20mg 3 times per day, but also get very lightheaded from it. I have noticed that after about 3 hours of my dose, my lightheaded feeling goes away, only to come back again after my next dose.
I was on Ativan 0.5mg for a while, I did feel better, but didn't want to get addicted to them. I weaned off Ativan in a bout a week, but did have some slight withdrawal symptoms.
I am just scared of meds, never had to take them prior to all this stuff happening to me. It has been like a very bad dream.
It is a nightmare - no other way to describe it when we aren't improving or getting worse. Propropanol just reduces our palpitations which makes life a bit easier and to cope with horrible symptoms.
I empathise with you a million per cent. I love this forum because people say exactly how they feel which in itself can be therapeutic to a certain degree.
Anyway I am having similar problems with drs not believing the signs and symptoms or not knowing what to and expecting me to put up with all these scary signs and symptoms. My thyroid issues were triggered off by antibiotics. Unbelievable but true. It was the fluroquinolones .
I have a medical report to prove this as well.
BETA BLOCKERS AND LIGHT HEADEDNESS.
This happened to me and guess what? There is hope. I say this because feeling light headed s very unpleasant, in my case it was not the beta blocker itself it was the BRAND.
The brand had been changed to the generic beta blocker. Once back of the branded brand if u get my drift the light headedness disappeared.
Another drug that caused lightheadness was just ONE valium. This had been prescribed for insomnia and it did not work as I was hyper with a tsh of 0.16 and later found to have 20 nodules on my thyroid.
It looks like you and I are in the same boat, as far unknowing doctors go. I am just so frustrated by their incompetence and lack of empathy. Not what their credo says at all.
I will have to check and see if I can get the non-generic brand of propranolol, thanks for the tip. I really just want to get off it though, but in due time. I never took valium, but ativan, and didn't really have any issues, other than being wary of the addiction aspect and withdrawals.
agree with what you have written. It is totally wrong the way thyroid patients are treated.
Is Endocrinology the Cinderella of medicine I ask myself time and time again.
My symptoms appear to be returning with a vengeance with panic attacks, severe anxiety and depression, feeling hot, sweating at night, thirsty, off food, no doubt I will be told I have got a bug etc, etc. The fact that I have had a bug previously and this is completely different does not appear to interest any drs.
I am also left without any treatment. I feel distraught to be honest.
I was prescribed the beta blocker for a condition called Long QT.
The valium was prescribed because when I first became ill or was aware of being ill I did not sleep for five days and five nights.
Sorry did u say u are in the UK. I presume that you are due to poor endo care!!
I too have been dealing with returning symptoms, but one thing I resently noticed was that when I do something new, like add a vitamin, or herb, or don't take my meds on time, is when these things happen. (Most of the time)
I too suffer from every symptom you describe. I have TPO antibodies sky high, have you had a thyroid sonogram done yet? You probably have nodules. I was given propranolol and one of the major and scariest side effects was the drop in blood pressure it causes. That almost made me pass out while driving so I stopped taking that quickly. I now take synthroid 50mcg daily and the side effects are minimal but I'm not noticing any positive real changes in my symptoms either. They say gluten free diet helps but I haven't been able to accomplish that. I'm hearing it could take up to or more than a year for synthroid to start helping symptoms. I feel your fear and frustration.
Wow! I could have written this post myself! I have anxiety, shakes, insomnia, hot flashes, exhaustion, changes in appetite and more! My results are exactly like yours!
TSH 0.27 (0.3-3.0)
Free T4 16 (12-22)
Free T3 5.0 (3.4-6.8)
Ferritin 55 (40-180)
B12 300 (180-700)
I also have elevated TPO antibodies, a 3cm nodule and previous diagnosis of Hashimotos - have they checked your antibodies?
I feel awful too but the doctors are doing nothing for me!
The doctors' diagnosis could be correct but it is more likely that you are hyperthyroid. The propranalol may be lowering your fT3 and raising your rT3. The obvious way forward is to try you on carbimazole (to reduce your thyroid hormone levels) and see how you go. Normally there is increased appetite in hyperthyroidism but the other symptoms are consisent with thyroid overactivity. The thyroid hormone levels can fluctuate in hyperthyroidism. They should also check your thyroid antibody levels. Push them to help you, point out that hyperthyroidism can affect your personality and heart.
I have noticed that some of my symptoms cross over to hypo, which only confuses me more. I also read a post from another user, who's test results were very similar to mine, but the doctor prescribed levo and his TSH came up into the normal limits.
Your b12 is low enough to cause some of your symptoms.
Mine were pretty much the same and agreed with doctors that I am one of those people who do not do well with that numbers. Anything below 500 can cause neurological symptoms.
If you are not supplementing yet I would recommend to do so!
Good! I hope b12 helps with some of your symptoms.
Give it some time. I took 1200mcg/day and took about week to feel something and during these 8 months more progress. Supplementing b12 and other vitamins might help to identify the symptoms and separate them from other illnesses. Sometimes doctors cannot see the connection and can't understand all the symptoms.
Your thyroid labs... were those results before you started the propranolol or after you'd been taking it for a while? Because that FT3 is pretty low, low enough to cause hypo symptoms.
Did they test the antibodies for Graves, as well?
What puzzles me is that your cholesterol is high. With hyper, cholesterol is usually pretty low. It's being hypO that makes it rise.
I had to go slow as I had other deficiencies too. Too much b12 lowered my zinc and affected my potassium levels. So I had to balance it a bit.
BUT I have been ill for 15 years so there was and still is so many things wrong.
For you things go smooth as you hopefully are not in that bad shape. Naturally things might have been pretty bad for some time before you had any symptoms.
I am sorry to hear that you are still feeling so awful and no nearer to finding a diagnosis.
You are negative for Thyroid Stim AB, TPOAb & TGAb (previous post). Your TSH is a little low and your T4 & T3 are within range.
Your reverse T3 level is very high and (I think) could indirectly be causing your anxiety and other symptoms.
Excess RT3 fits into the T3 receptors and sticks there, so blocking the action of further T3 on the body causing hypothyroid symptoms.
High RT3 can be caused by low iron, low B12 and high cortisol. Also by extreme dieting (increased to slow the metabolism and make better use of the available food).
The prime diagnostic for RT3 issues is the ratio of FT3 to Reverse T3. Your problem is finding an endo who not only can interpret RT3 test results but knows how to treat RT3 when elevated.
Also check out Tissue Resistance To Thyroid Hormone (in link below.) This is very rare but probably worth a read. This article states this happens only with high thyroid hormones but if you google other sites there are lots of discrepancies on issue.
Low Prolactin usually goes with low Follicle Stim Hormone & can indicate a pituitary problem.? .
You need to supplement iron & B12.
I wouldn’t recommend taking SSRI’s for high RT3. I would think you need some T3 to clear RT3 but only under medical supervision as your issues are so complex.
I am so frustrated with these doctors, it is just incredible how much they really don't know about their field of practice, ha practice. That must be what they are doing on me.
Also, you're saying hypo, not hyper? My doctors keep saying hyper?
I wouldn't like to suggest you are hypo or hyper as have unusual thyroid hormone test results and symptoms.
If you read the first link I supplied above it details an alternative, traditional and holistic approach to reducing elevated RT3.
I would still recommend you seek further medical help as your issues are complex. I understand your frustration and wish you well.
When replying, click on the the orange reply button and the person you are replying to will be notified.
Flower
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Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
I read the link and also sent in my test results for an evaluation. I greatly appreciate the info. And yes, it has been almost 6 months and still no proper diagnosis. I even went to the Mayo clinic and they said sub clinical hyperthyroidism as well, but offered no solutions and didn't even mention the rT3.
Go figure.
Also, I do not see an Orange reply button, just a Green one.
Reverse T3 is not widely understood. It is immensely complex and many doctors/endos who can not interpret the test results will diagnosis hyperthyroidism.
To treat using RT3 results means also considering sex hormones in combination with symptoms (and doctors don't usually consider those..! ! ! .) ....
Also high cortisol will inhibit the 5-deiodinase enzyme (type 1), reducing the amount of converted T3. The T4 is then converted in RT3 via 5-deiodinase enzyme (type 3).
There is research into RT3 continuing even after cortisol has been balanced, as the T3 and RT3 ratio imbalance can inhibit the 5-deiodinase enzyme (type1) so not allowing normal T3 conversion.
Also other causes of high RT3 are adrenal fatigue/exhaustion, hypoglycaemia, nutritional deficiencies, low sex hormones.
Also inflammation (NF kappa -B), dieting, nutrient deficiencies such as selenium, zinc, Vit B6 & Vit B12, Vit D, Vit E, iron & iodine and low testerorone.
You have had so many tests all the clues must be there for a doctor who knows what he is doing.
My reply buttons are always orange but you just replied to me so yours must be green ! ! ...
Flower
……………………………………………………………………………………………………
Disclaimer: I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal before applying any of these suggestions.
Hello! What is this you're speaking of? I suffer from low testosterone and high FSH, I'm a woman. Doctors aren't even interested in the abnormal hormone levels. B12 is normal as well as all thyroid labs except of course TPOs over 600 and growing nodule. Symptoms persist despite making my PCP listen to me and give me 50mcgs of synthroid daily. Some days I cannot get up and sleep well into the afternoon which is no life. I am tired and dizzy all the time and shaky upon awakening. Palpitations aren't as bad since the synthroid but the fatigue and dizziness are enough to make someone go nuts. It's been 2 months on synthroid, should I just keep waiting it out? All the doctors are ignoring the hormone imbalance saying there isn't anything they can do about it.
I'm a recovered hyperthyroid patient, having had a slow-growing but eventually large nodule treated with radioactive iodine nearly five years ago. I recognise the symptoms you describe from the period when I was heading towards being clinically hyperthyroid.
I think if I'm reading your post right, the results are after a few weeks' treatment and it looks (to me - I am not a doctor) like your T4 is currently mid-range. The treatment you are having may not 'fix' your TSH levels, but perhaps it can dial down the amount of T4 or the converted T3 that is available to your body. That's the hormone that directly affects how your body is feeling day to day.
I'm not sure why you feel your treatment isn't right - I'm not saying your symptoms are imaginary but if your condition can be managed without surgery or radiotherapy that's got to be a win, even if that position doesn't last for ever. The treatment you are getting sounds right for the stage you are at.
The next level of treatment is carbimazole, which I took for a while when I was clinically hyperthyroid. Although it works well it has rare but very serious side effects like suddenly switching off the immune system. I'm glad I didn't need to be on it for long, I just needed it to get me through to either surgical removal, or radiotherapy. I had to have either surgery or RAI at that point because my nodule was so large.
You and your body have been through a lot. Especially don't forget that when hormone levels change, it's rare to feel better immediately. And anxiety doesn't switch off overnight. After I was treated, the best thing I did for myself was go on a gentle exercise - healthy eating - fresh air - getting enough sleep regime. Over time it put back the vitamins, nutrients, muscle tone, bone density and so on that I'd lost.
If the anxiety is getting in the way of you tackling this, you could ask if there is something further the GP could recommend?
I am only taking propranolol, and some vitamins and herbs. My doctors haven't really said much about anything, other than sub clinical hyperthyroidism and lets watch it.
Meanwhile, my symptoms seem to be getting worse by the day.
Are you seeing an endocrinologist, or just a GP? You may have to pester
Get used to the 'watching' by the way! And if at any point you feel really well, note what TSH/T4/T3 that was. The reason being that while there is a range, it's rare to know what is "right" for the individual because we don't get tested until something is wrong.
There are three different kinds of thyroid antibodies. You've had two of them tested and they are both negative. It would be very worthwhile asking for the remaining kind to be tested as well : Thyroglobulin antibody (TgAb). It can be tested privately if you can't get your doctor to agree to getting it done (I'm writing from a UK perspective, so this may not apply to you). See the table on the following link for info on each type of antibody :
The Vitamin D Council suggests that a level of 50 ng/ml is the ideal level to aim for.
If you do your own research into vitamin D levels, be aware that some parts of the world use different units of measurement for vitamin D : nmol/L. Be sure you know which units are being used, because they are not equivalent.
Like people above I think your B12 level is too low. Again, you may see different units - ng/L rather than pg/mL, but in this case the units are equivalent, so no conversion of numbers is required. The Pernicious Anaemia Society gives an ideal level for B12 of about 1000ng/L. Unlike other vitamins and minerals, B12 isn't poisonous, so going over the range is not a problem.
There are several different kinds of B12 and most people do best with methylcobalamin. The favourite brands on this site are Jarrow Formulas and Solgar. Buy the 1000mcg lozenges, stick it in your mouth where it doesn't annoy you and let it dissolve as slowly as possible - don't suck or chew.
Since both your iron and ferritin are low in range, (you are lucky to have both measurements!), you would probably feel better if you raised your levels. Although there are different opinions about ferritin levels, many of us aim to get to mid-range which would be about 165ng/mL with your reference range.
I am hypo NOT hyper, but also have to take propranolol (otherwise I get hyper symptoms) Been doing so for many years - see my profile - Hashimotos
I have found personally that 3 x day is not frequent enough for me. I take 4 x day at waking, lunch time, dinner and bedtime. Have in past taken 4 x 20mg when taking higher dose (too high) dose of Levo - but now on lower dose propranolol of 4 x 10mg
Also when in past had bad insomnia I use to take (at endo recommendation) 20mg at bedtime, 10mg rest of doses.
I greatly appreciate everyone's feedback today, you are an awesome group.
If you can think of anything else I need to look into, or do, let me know. I will be bringing all of this up with my ENDO and GP, hopefully they will listen.
Your FT4 is 40% of the way through the reference range, your FT3 is 42% of the way through the reference range, i.e. both are in the lower half of the range, and yet TSH is under range.
I would be very curious to know if your pituitary is working properly. But I have no idea how the pituitary is tested.
In a healthy person your TSH would be substantially higher with such low FT4 and FT3.
I've had high rT3 (way over the range) in the past. I had lots of low nutrients, at the time. Improving them made me feel better, and although I don't know if there is a direct connection between the two, my rT3 lowered too.
I forgot to mention on my earlier post that iron must be monitored very carefully when taking supplements. Too much iron and/or ferritin is dangerous/poisonous because the body has no obvious way to get rid of an excess. A really tiny amount is excreted every day via the gut, but that is really the only way the body gets rid of iron.
I agree with greygoose's comments earlier - I think you are more likely to be hypothyroid rather than hyperthyroid. It is more likely that you have secondary or tertiary hypothyroidism, rather than primary hypothyroidism.
Your results are not that different from mine (although I've never had Rt3 done) and I have secondary HYPO. My TSH is bottom of range, but the rest about the same. Initially the doctor thought I would be hyper, until she saw the bloods. Many of my symptoms were from low cortisol (and low ferritin, which I still have).
Not a lot! I have biohrt to improve sex hormone levels including DHEA (that really helped) and self-medicate with T3 (not ill enough for doctor). I also take adrenal cortex after not being quite ill enough to have Addisons disease after synacthen and insulin stress tests.
Cardiology told me my ectopic beats weren't going to kill me and that beta blockers would make me feel worse (although happy to prescribe if I wanted). Useful to know.
Gastroenterology told me what I didn't have, but were otherwise useless.
Had some sort of brain scan but never got the results (years ago and I was too ill to bother to find out), so I assume no tumour or not one that was worth worrying about.
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Low TSH - is that bad?
Now I'm looking for answers.
what's my T4 \"problem\"
Confused about anti bodies. Please can someone look at my results.
