I am desperate. I feel so ill. To cut a long story short I have felt like this for seven years now (ever since taken roaccutane). But for the past few years it's got progressively worse. I have tons of symptoms and here are my main ones -
facial flushing
chronic fatigue
inability to concentrate
need naps in the afternoon
wake feeling tired
heightened appetite
heat intolerance (always sweating even in the winter - despite constantly having a 35.xx base temperature)
facial swelling (moon face? can't see my ears from the front on)
dry mouth
bad breath
poor focusing
dry eyes
sensitive to light
dry skin
dry itchy scalp
chronic itching
muscles and joint pain
alcohol intolerance
IBS
ulcers
irritability
wanting to be solitary
anxiety
easily startled
dizziness
depression
brain fog
That's a long list and obviously some are more severe than others. I was so relieved when I found out my symptoms pretty much matched a thyroid problem. Thought i'd finally found the answer but my blood test seems to have came back OK?
Do any of you have any ideas on what else I could test for? Or do my thyroid results show something, anything that could cause these symptoms? I'll try to help by listing only the symptoms that cause me extreme problems rather than the whole list (as some of them aren't that bad)
facial flushing
chronic fatigue
need naps in the afternoon
wake feeling tired
heat intolerance (always sweating even in the winter - despite constantly having a 35.xx base temperature)
facial swelling (moon face? can't see my ears from the front on)
You are the outlier case with normal TSH, but still beeing hypothiroid!!25_50 mcg t4 plus 0.6 mcg t3 would help you...i would start with 12.5 mcg t4
Your total t4 is too low as well as ft4.....your ft3 is ok, becasue body is trying to keep it stable but you should be treated for symptoms and ft4 reasons!!!
So even though my results aren't extremely off the scale is it still possible it's causing all these symptoms? It's literally a struggle climbing the stairs right now! And you suggest taking 12.5mcg..i'm sure i've read that even 25mcg is too low to make a difference so would 12.5mcg even benefit me at all?
Why not first try it and see how it works? if you dont feel absolutely nothing on 12.5 mcg t4 after 7 days increase to 25...dont go more for 8 weeks at least...i sensed even 12.5 mcg like big chnage!!i was hypo with terrible symptoms for years!!!including panick attack 2 times daily!
Yes it is possible that you suffer so!...your t4 is low, t3 is ok, but body probably struggling big time to maintain it, the good thing is you probably have no conversion issue, becasue bad situation are people with low ft3 this points to probably some bigger mess in their bodies
Take 12.5 mcg and then 25 how i told you and see the difference you may be just do great on 50+ 1 or 2 mcg t3.....in the long run..so if you will recklesly increase your doages without any plan and monitoring your feeling you can easily miss your sweet spot and be miserable for decade!!
People on forum are all overmedicated big time so they all think they are non converters and dont trust anyone but your own skin you can increase the t4 when you feel this not working for you but not earlier!!you will miss the sweet spot and be like all of us have become....
Oh just read you are a guy, yes thats why your ft3 is this good, anyway follow as instructed by dr. Ivana lol i wish someone explained it like this at the beginning, DONT miss the sweet spot!! 100mcg is total thyrood production of t4 so 25 is 25% this is not small by any means! Also 4_6 mcg t3 so taking 2 mcg is 50 % of total again nothing small!!!
thank you so much for your detailed replies, they're really helpful.
i actually ordered .25mcg of synthroid a few weeks ago in the hope that the blood tests shown something so i could start taking it right away. i'm a little confused now though. i'm not sure if you're aware of thyroidboards.com? one of the experienced members there seems to think i am hyper rather than hypo due to my low T4 & FT4 and slightly higher FT3?
Omg the one may be right, i did not read it very carefully since the list was very long.......you got me confused now,.....higher appetite, are you very hungry all the time? What about your blood pressure and heart rate?....oh so sorry i misse dit completely, i thought ft3 was 5.1 .......5.5 its not tht high just points good conversion....you may one of those patients that will do well on t4 only!!so lucky
Your symptoms got me confused completely!! Higher appetite , hot flashes are def hyper one......what about heart rate and blood pressure.....wow i must read it more carefully next time, pls excuse me for this
Going just by the blood test i would have concluded you are hypo, becasue i read only chronic fatigue and thought ok its all the same shit i know well lol...so then pls do more tests like scyntigrafia ultrsound and get yourself good doctor.....hypo people do feel constantly like hungry but can not eat much
ah ok no problem. at least that solves the confusion a bit! i do tend to have hyper symptoms i suppose but then i've read somewhere that a few people have been hypo but are always hot. also my morning temperature is often 35.7 which is obviously really low (hypo) but on the outside i feel boiling hot!
do you think my gp will give me an ultrasound then? i just think he will say my numbers are normal and that's it. i know you can self medicate for hypo but how do people treat hyper?
You got me confused now...everythingnpoints to hypo except that hungar thing!.......but when i think again i think i was right ....you are hypo...
No 12.5 mcg is really safe one you could not make such amess.....no t4 is better taken in the morning! On an empty stomach and wait for 45 mins before you eat .i would still go make scyntigraphia if not sure Then you will know what it is 100%
No it wont affect any vitamins nor ferritin lab tests...dont worry about that....
No no you must be hypo with that low body temp, no way hyper...you are an outlier case hyper TSHwould be below 0.5
oh jesus my head is spinning now. all these post edits haha. the hunger thing is most likely just comfort eating. i rarely have the energy to leave the house so i tend to just eat. i wouldn't say it's a big issue.
my worst symptoms are basically fatigue, dry mouth, always hot (but low body temp), severe itching and my face is really round and looks fat.
And do you catch a cold easily? Lol sorry for confusion :).....
Then dont say you have higher appetite when its just comfort eating, higher appetite is when you eat really a lot and feel strong hungar before you go to eat comfort eating or this sweet eating is when you dont eat so much but often beasue energy low, or ferritin low
Heart rate is the key!! ...if you googled for hyper symptoms you could not miss it you are young man most probably as i said hypo ...but then got confused ...since am in a thinkingnprocess and my head spinning from all new things i read was feeling overconfident though so you confused me with that other experienced memeber...i am on interent just for 3 weeks not experienced in giving treatments over the internet so all satys how i said in the deleted post lol
Some people who are hyper on mds can get puffed up face too, so this confused me...but round puffy face without meds is hypo, hyper people are in general thin!!! They loose weight even thouhg eating
Plus how on erth low ft4 can mean hyper!! .....low ft4 can be hyper when on t3 meds but thast another story....
yeah it's hard to differentiate between a puffy pace (hypo) or moon face (cushings). i searched google images but still can't find many good examples. maybe they both look the same? i do know for sure though that my round face hasn't come from medication.
i just felt my pulse for one minute and it was 69. seems fairly normal doesn't it?
Yes it does!! You confused me, and above all this experienced person who knows so little low ft4 or ft3 is hypo...high is hyper....and its easy.....
hope you do well on t4 ......try it its safe really ....and make a diary how you felt on each dose when you take blood again..it is very helpful, btw one member here contacted me because of this writting of ours , it upset her, and i dont get it why, but i will stop now if you need advice send message
Hyper is much more serious stuff, more dangerous, but if you dont have higher blood pressure and heart rate i dont think you are hyper....body temp low and having hot flashes is beyond me i did sweat beeing hypothiroid but not all day long, just during pms times....hypo people do have that hyper phase where they swat and feel hot..so this may explain it! Hungar thing doesnt fit in at all...... all other symptoms and labs point to hypo!!!...tsh is a bit confusing but no big deal it just tells you are a little bit specific case lol...
You have to pay for a good chekup on thyroid then if he doesnt give you ultrasound..what about hungar thing? You did not answer this...hey i do come back to my first thing i deleted i think i was right and she was very wrong, but now you know how it is hard to medicate over the internet lol.....
i've had my blood pressure measured a lot of times in the past seven years and i think it's always been fine. i think my heart may beat a little fast but then i'm always anxious so it's mainly only when i exert myself that i actually notice it beating. it's probably fine actually when i'm resting.
yeh i'm also confused about the low body temp/always hot thing. i have read though that a lot of people with hypo can still experience hyper symptoms and vice versa.
i agree about hyper being dangerous (from what i've read anyway), i'm not sure it would be possible to live with hyper for seven years without treatment?
i answered the hunger thing above your last reply - i think it's just comfort eating more than anything, hard to explain really!
So try this t4 in the morning and i knew it almost first week ......
Yes, i am silly no way low ft4 can be hyper!!also look how other folks here got you are hypo too .....this member you said is really uneducated, it would neber cross my mind but i am in a midst of thinking about people who are hyper on meds..and they get some of the symptoms like hot flashes, puffed up face, hungar etc ...heart rate higher etc low ft4 and very low tsh, while yours is nowhere like that, and most probably you may do fine only on t4!!!
you say you felt it helping after the first week? i was under the impression that it seemed to make you feel worse for a few weeks before it helped? but then i suppose we only get to read the horror stories on these things as the people who greatly benefit from it probably never post again as they are out there enjoying life!
Your symptoms do sound very hypothyroid. Unfortunately doctors have been told not to medicate until (in the UK) the TSH reaches 10. Some doctors will prescribe around 5 if you have clinical symptoms. I think you will be interested in the 'Interpretation of the Blood Tests' but the issue is "Will your GP give you a trial of levothyroxine?"
Before the blood tests came in I think around the late 1960's people were medicated according to their clinical symptoms alone. I believe that
I have hypothyroidism too but I have managed to get rid of some of the things on your list by other means. I will mention them just in case as they aren't necessarily all linked:
Muscle aches and pains - I have discovered that eating too much sugar causes this for me - switching to a sugar free diet has helped enormously. I am using articifical sweeteners which may also be bad for you but for me personally sugar seems to be much worse.
Itchy dry scalp - I am allergic to Methylisothiazolinone as are many people apparently - it's really hard to find a shampoo without it in - see this article dailymail.co.uk/femail/arti...
Dry eyes - I find that by using Lacrilube cream at night in my eyes they are fine for the next day and I can even wear contact lenses again.
I have tried almost everything to help my eyes over the years including lacrilube but everything seems to make them more sore. I just look so tired all the time!
Have you had your B12 tested ? - along with Ferritin - folate - Iron - VitD. They need to be at the TOP of the range and not just in range. Ferritin about 90.
I have a doctors appointment this friday so i will request these tests.
Obviously low levels in these vitamins can cause fatigue etc. But i'm still confused as to why i'm so hot and sweaty all day despite having a low temp and my thyroid levels don't really indicate hyperT. It's all so confusing arghh.
For the dry eyes, I would recommend treating yourself as if you have blepharitis. I've never been diagnosed with the condition but I've treated myself as if I have it. My eyes have been much more comfortable ever since.
1) I wash my eyes with Boots own brand Eye Wash - dip a ball of cotton in the eye wash and clean your eye that way (use a clean cotton ball for each eye) rather than using the supplied eye bath.
2) I clean/rub my eyes, particularly around the eyelashes on both lids, with Blephasol and eye makeup pads (I don't actually wear makeup but the eye makeup remover pads are very useful ) - this stuff :
Read the reviews - it gets lots of positive feedback. I buy from Boots - it is in the contact lens & eye drops section.
3) I use a gel formulation night-time dry eye ointment before I go to bed.
4) I should point out that what I do is not a strict self-care routine for blepharitis - I miss some things out, like using hot pads - but my simplified routine works for me.
I used to be obsessed with treating my eyes. Used to try every eye drop available and i also used an eye pack thing that you heat in the microwave, before cleaning them with a cotton bud. It didn't seem to help. I think over the past few years my other symptoms have become much more prominent that my eyes almost don't seem as bad anymore even though they are still sore and i always look shattered.
I will request a cortisol test as i know high levels of it can cause facial swelling. Really frustrating how literally everything seems to mimic eachother with the same symptoms.
Quite a lot of the things you mention such as waking feeling tired, chronic fatigue, wanting to be solitary & anxiety are all symptoms I have & I've just been diagnosed with severe growth hormone deficiency. My GP thought I was depressed but the hospital have assured me that is how the symptoms can present. Another biggie with GH is muscle weakness & very emotional, if you want more info check the Pituitary Foundation site. I've just started treatment which is daily injections so I'd ask to have your GH checked but bear in mind it's taken me over 2 years to get to this stage & I've really had to drag myself around.
I have very itchy skin but also have psoriasis, my skin is poor due to bad flare up some years ago.
For dry eyes, I've tried several types of drops but the one that seems to work best is visco tears gel which I now get on prescription.
I was bumbling along quite happily (all things considered) until I was prescribed Roaccutane. I feel it damaged my ability to convert Thyroxine into triiodothyronine at a cellular level, which of course doesn't show up in serum assays. So your blood tests can look normal and within range, whilst at a cellular level you're seriously deficient, particularly in T3. All the best to you, Carpsy!
Yeh roaccutane has destroyed me. Should have just let the acne go away with time.
So what you're saying is even though your tests look normal (say FT3) you still need T3 treatment? How did you work that out? Doctor would probably laugh at me if i suggested the results weren't actually telling the truth.
You've been suffering with this for years it appears. What do you think of my test results? I've read that most people tend to do better on just T3. Is this the case even if your FT4 is low and your FT3 is at an acceptable level? Still trying to get my head around it all.
I wouldn't say that most people tend to do better on T3, just that most people on this site are here because they've had problems with T4, so there tends to be a lot of discussion about alternatives, and it can give the impression that T4 is universally crap. This is most decidedly not the case - the vast majority do at least OK on T4 and never come here. I was fine on T4 for 20yrs. I'm not your man for interpreting blood test results, as I only need TSH and free T3 myself.
I'm not saying T3 would be definitely the right way for you, and I recommend that you do some reading around accutane/roaccutane and it's potential effects on thyroid function. It might tempt you to sue your dermatologist - I would sue mine but he's already in gaol.
Hi just stumbled across this thread and wry thoroughly read it all, not sure if you are still on here or if you got this sorted, but would be very interested to speak to you as I am having all the exact same problems as you and at a point of desperation
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