Hi there. I'm struggling alot atm with symptoms that are destroying my life.
I'm a 30 year old woman, not overweight, eat pretty normally, sleep normally. But for years i've had alot of different symptoms and the doctor hasn't come to a conclusion...
The main problem is exhaustion. I feel like I haven't slept most of the time. No energy, no get up and go. Muscle aches. Dry skin, mouth, eyes and more. Its taken over my life. I will rarely (like every few weeks or so) have a burst of energy for a few hours, but then I crash and am wiped out for the rest of the day. I used to work full time long hours and thought I would perhaps feel better being in lockdown and staying home but I feel no different.
Tried many things - Antidepressants.
Multi Vitamins of different kinds.
Numerous blood tests for the usual things... i'm not diabetic. No low levels of vitamins or iron.
My TSH was at 4.95. So upper range of their 'normal'. Which top end was 5. I went onto Levothyroxine but saw no change in my symptoms.
The last few days i've been virtually bed ridden. With the area around my thyroid in my throat feeling very slightly sore or inflammed.
Has anybody got any ideas? My doctor has refered me to an Endo. But I don't know how long that will take.
Thank you.
Just to add, I also sometimes have Low Blood Pressure. But not all the time.
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My TSH was at 4.95. So upper range of 'normal'. I went onto Levothyroxine but saw no change in my symptoms.
So you were diagnosed with hypothyroidism. I guess you are not in the UK to get a diagnosis with that TSH.
Are you still on Levo?
If so, how long have you been on it?
What dose?
Do you have any other test results? Please post them, along with their reference ranges (these vary from lab to lab so we need to see them) for as many of these as you have :
TSH
FT4
FT3
Thyroid antibodies
Vit D - also include unit of measurement
B12 - also include unit of measurement
Folate
Ferritin
Are you taking any other medication or supplements?
No I am in the UK. My doctor prescribed me Levo purely because of my symptoms and I have alot of family members on my mothers side with Hypothyroidism.
I think in 2011, my TSH was at 8. So it has come down abit naturally. In 2011 I briefly went onto Levo but I gained weight (or bloated) so I removed myself.
I was on 25mg of Levo for a month. But the same as before... my clothes were suddenly tightening and I felt bloated. So again, I stopped taking at the end of March.
I shall try to find out my other results and post them.
In 2011, levothyroxine was faulty in the UK. If you were prescribed 25mcgs it was likely TEVA levothyroxine which was making people ill and some doses were withdrawn in 2013. So it could be something to consider.
25mcgs levo is too small an adult starter dose unless frail, elderly or with a heart condition.
If TSH was 8 then you were hypothyroid. Results may fluctuate due to various factors.
Well levothyroxine isn’t like aspirin with instant results....it takes 6-8 weeks for each dose to have effect...
Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).
Bloods should be retested 6-8 weeks after each dose increase
The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range
NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.
Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies
Ask GP to test vitamin levels and thyroid antibodies
You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative
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, best not mentioned to GP or phlebotomist)
Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins
Recommend you get full thyroid and vitamin testing...either is GP or privately....and come back with new post once you get results
If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).
About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.
Hi Violet Rose, I'm sorry to hear what you're experiencing. As a thyroid cancer patient, I suggest you seek an endocrinologist for a proper diagnosis. I use to feel the same way..tired, exhausted, couldn't lift my head off the bed someday, it was terrible! Having blood work my tsh levels were low, my vitamin D levels were extremely low and my pancreas was producing too much insulin. So, it could be an underlying issue only an endocrinologist can diagnose you for. The levothyroxine is a generic medication & that also was one of the problems for me, so I take the brand synthroid and it works better. I hope this info helps & I will definitely keep you in my prayers.
Hi VioletRose90, I am sorry you are not feeling well.
I am 31 and have had symptoms of exhaustion and dry skin, nose, mouth and eyes for a long time too.
I agree with SlowDragon, it would be good for you to have a full thyroid panel test (on an empty stomach and in the morning). I am overdue for blood test too actually but will do it soon. I have Hashimoto’s and take natural dessicated thyroid to treat my hypothyroidism. I was also diagnosed with chronic fatigue syndrome 2 years ago and haven’t been able to work in the past 2 years.
As it turns out I was taking too low of a dose too for my thyroid, and am now in the process of gradually increasing my NDT intake, which will probably help with my exhaustion.
I also have suspicions of having Sjogren’s syndrome as my dryness issues have been progressively getting more severe over the years. I will get tested for that soon too. I wish you good luck and I hope you feel better soon : ) !
I will give an update when I have the results of my blood tests.
Have you been checked for Sjogrens Syndrome? Sounds very like it to me. I have it along with Hashimotos. Your endo will run antibody screens. Also check out the Sjogrens Foundation website which may help.
I can’t help you because you have described my symptoms perfectly. I would love to know what’s wrong with me. I was referred to an Endo before lockdown, but that’s on hold for evermore. I’ve never known anyone to experience the same as me. I thought I was going mad or had Covid. I’ve got a sore throat and experienced everything that you have. I hope you get the answer. My Doctors are the same. They keep telling me I’m ok. I’m not ok.Im sorry though that you are feeling unwell. I could just relate so much to your symptoms. Take care.
There's no doubt that you have an underactive and untreated thyroid (most likely Hashimoto's but you must get this checked with antibody tests). The problem with this, is it can be part of a whole package of issues. Hashi's is relatively easy to diagnose with the correct labwork, but if your doctor was struggling to do this properly then it's unlikely they'll consider comorbid conditions.
Be firm with your doctor(s) about what you need to find out.... Find an approved symptom checker for Hashi's and show this to them. Be completely clear about the symptoms that do and don't apply to you and their severity. Also add things that are not listed..... dry mucous membranes, mouth and eyes is not specifically Hashi's and so a diagnostic test for Sjogren's would be appropriate.
In terms of helping both conditions it may be worth looking into reducing histamine in your body. This may sound like mumbo jumbo at this stage in your journey, but there is evidence pointing to some of us having histamine overload. My daughter has been successful doing this, and I'm not necessarily saying it works for everyone, but you can (if you are affected this way) dampen down some symptoms quite well by following a low histamine diet. Also, look into Sea Buckthorn oil capsules for Sjogren's symptoms.... They are known to be one of the best alternative medicine treatments.
This link is a pretty comprehensive look (for medical doctors) at Sjogren's. Your doctor should read it!
Sometimes starting Levothyroxine can actually make you feel worse at first. This could be due to a few things (such as a brand that doesn't suit you, or adrenal issues) but is often because a small amount like 25mcg can cause your thyroid to stop or lower whatever little thyroid hormone it is producing, so the total amount goes down instead of up.
But usually, if you persevere and the dose is gradually increased, you should begin to feel better.
And by "Gradually" I mean GRADUALLY! The usual pattern is to start with 50mcg (or sometimes 25, as others have mentioned) wait 6-8 weeks, have a blood test, then an increase of no more than 25mcg at a time.
Helpful thanks. Im struggling had goitre so thyroidectomy. started on 25 and 50 25v50 but on the 50 I dont feel well and tummy trouble, pain goingvto loo in the night. Due to coroba Gps say stay away so im overv70 and obeyed. I feel disserted now and not good. The multiple brown marks are growing and Im aware so much now. I take the thyroxene at approx 6 to 7 each morning with water. Do youvthink if I take 25 then and maybe split the other 25 late on empty stomac it might avoid the toilet. Its obviously not suiting me. Can things get right without drugs over a year say adjusting levels within. Im goingvto try to get a blood test next 2 wks. My Docs are not very helpful but changing is such a saga I understand. thanks
" Can things get right without drugs over a year say adjusting levels within."
Thyroid medication isn't a drug if that's what you mean, it's a replacement for our natural hormone that we need to live.
There are a number of reasons an increase in thyroxine may not suit you. Perhaps you need to increase more slowly. Or you may be reacting to the fillers in the tablets (it's impossible to take thyroxine on its own as the amounts are so very tiny, they have to add other things to bulk it out). Different brands of Levo have different fillers and some people can't take those brands (TEVA is especially known for this).
Splitting the tablet may help, I haven't tried it.
You might want to be tested for Epstein-Barr virus. That can have a lot of "wipe-out" symptoms. It never occurred to my traditional doctors to test for it. I had gone to a natural path doctor out of desperation, and she ordered the testing which found it (along with the high reverse T3 level, which I am now taking cytomel for). I am hopeful I will have more energy after a few months.
Thank you so much for each of your replies I have read and will look into every single one.
Few more things to mention -
I had an anti body blood test in 2012 and it came back negative. (I know that doesn't mean it couldn't have changed since).
The only reason I stopped taking Levo both times I started it is due to the weight gain/bloating. I was feeling worse knowing my clothes were getting tight.
I have been struggling with Mgd. (Meibomian gland dysfunction) and dry eye since 2012.
Alas, it can be many things for which the primary and specialist medical practitioners are unequipped to help you. There’s nothing in your profile about your history— i.e. accidents, illnesses, surgical treatments — that would help identify the event(s) precipitating this horrible debilitating fatigue and exhaustion (two different things, but only .0001% of medical providers understand the nuances around the brain, gut and energy production and homeostasis.
A brain injury of the “mild” type can set off a cascade of events that will have no detectable clinical markers .... except having a life experience like you are describing.
The gut is a vital extension of the brain in one sense, and when either one is in trouble the whole bodily system will be dragged down because the fundamental biochemical processes start to fail. The body valiantly tries to maintain homeostasis, and adapts as much as possible. But none of these maladies are detectable with serological tests known by doctors. The vitamins and mineral and other factors looked at in blood panels won’t detect what’s going on.
This can be quite demoralizing.
Foundational to energy production and stabilization of the functions you’re describing as having broken down is the gut microbiome and the lining of the small intestine. This might as well be on the moon for all the access we have to tests that give insight when things are broken. Oddly enough, a blow to the brain from a fall or other event, while not causing loss of consciousness, will trigger an energy demand that is sent to the gut. “Please increase energy production by a factor of ten. We need power for a decade of repairs and remodeling.”
Now throw in a few rounds of antibiotics for infections or what not, perhaps prophylactic antibiotics during and post surgery, and the gut microbiome is decimated. This makes it impossible to keep up with demands, and the body runs in a deficit that continues for years and only gets worse.
I have been having a similar experience to yourself and found a functional medicine practitioner with access to sophisticated diagnostics that look at the populations of gut bacteria and yeasts, byproducts of metabolism, genetic factors etc., and enables an actual view of what has broken down, so that interventions can be started.
The interventions include sometimes huge restorative doses of amino acids, B vitamins, protein, herbs, probiotics (no pharmaceuticals), prebiotics, under the supervision of a clinically trained professional.
And then it takes a long time for the body to heal.
I started on the journey with an endocrinologist, thinking he would have the answers, as the endocrine system is historically associated with energy production. After a year of patient adjustment of thyroid hormone replacement, he said “Maybe it’s something else.”
Gut disorders can precipitate thyroid autoimmunity. (As in my gut disorder caused by gluten). But this is rarely on the radar of traditional MDs (endo or otherwise).
Out of curiosity, how far were your Free T3 and Free T4 through their ranges? Here is a handy calculator that allows you to input your lab result for FT4 in the first field, the bottom number of the range in the next field, and the top number of the range in the last field. Repeat the process for Free T3 on the second line, then click the Oblicz button to see the percent through range the program has calculated.
If you never had your free T3 tested (which is common, unfortunately), then your thyroid hormone replacement was never properly adjusted. If that's the case, then maybe it really IS thyroid, not "something else."
Most people feel their best when both free thyroid hormones are at least in the top half, and some need it to be in the top quadrant (i.e., above 75% through range.)
I would also get your adrenals checked as i had your exact symtoms and hypo sounds like adrenal fatigue i was low cortisol throughout the day all endos still wouldnt prescrib hydro cortisonne eventually one did lot of those symtoms went away and i could also tolerate low doses of T3 which i couldnt before on top of t4
Simptomele tale seamana foarte mult cu ale mele.Nu te axa doar pe tiroida,poate fi vorba de glutenul pe care corpul tau nu il mai tolereaza.Eu dupa ce am renuntat la cereale si paine mi_am revenit spectaculos.Merita sa verificati daca nu e si cazul tau. Cele bune!
As this is a UK based forum, and you are responding to a post written in English, can you please write your replies in English for the benefit of the original poster and anyone who may benefit from your contribution who doesn't speak Romanian.
Please ask your doctor to check your parathyroid and adrenaline hormone and do ultrasound. I have these symptoms and it’s all due to endocrinological issues related to these glands
The most common cause of hypothyroid is Hashimoto's. Get a doc to run tests of your TPO and TG antibodies. You didn't say how much levo you were on, and that is important. Also, some people who cannot convert T4 (levothyroxine:thyroid storage hormone) to T3 (liothyronine:active thyroid hormone) will never experience good health on levo-only. TSH is not a great diagnostic tool, and even worse for treatment. FT3 and FT4 tests together do a much better job of showing thyroid status.
Your symptoms sure sound like they could be hypothyroid. Not too many docs these days can diagnose/treat on the basis of symptoms alone. You might want to take a look at hypothyroidmom's symptom list to see if this rings other bells:
I have had similar problems, whereby taking thyroxine did not appear to help, still without much energy, but after a chance blood test showed that I had high levels of parathyroid hormone. This hormone keeps the levels of calcium in the blood high and that in turn results in symptoms of tiredness, and others! (called Hypercalcemia) . If you see the consultant it might be worth asking for a test of the parathyroid. Look it up.
Hi everybody. Thanks for the replies. I only had my TSH checked in relation to my thyroid.
My mood today has been very low. I suffer from a situational depression where some days it is worse than others... I take 20mg of Citalopram for this. I believe my doctor thinks my symptoms with my energy levels etc are all related to the depression. But I only partly agree. I think if I HAD more energy, my mind would feel a little better too.
Hi, wow it like you describing me here, I also have been suffering most of my life, was diagnosed with underactive thyroid 25 years ago ( 48 now) taking Levothyroxine but I don't think it's working because my thyroid test is always normal but my symptoms have not changed. I also feel exhausted very often and muscles pain. All my life I am fighting back by exercising a lot but there times when I just can't do anything because I get out of breath very easily and feel incredible fatigue. It's got worse in the last 6 years. Dry eyes, dry throat, loss of sense of smell and taste Doctors have no answer for me either. I have low blood pressure and my pulse is also low. Otherwise, most of the blood test are normal, vitamin D is an exception and gets low often. I hope you find an answer. Maybe a good idea to check oestrogen and FSH
Hi guys, had some news today. The Endo has cancelled my referal on the grounds that he 'doesn't think I fit the criteria' to attend the clinic. I'm very confused as to why based on all my symptoms. I won't get to speak to my Gp as to why until next week but I feel pretty disheartened and like they don't believe me.
I'm not with it enough today to give decent advice about thyroid numbers, but i can say this:
The very feeling you have now ,that 'they don't believe you' is probably worse for your long term physical /mental health than anything else , thyroid or not.
I felt like that for years, and it turned me into a 'hidden person' , stopped me talking to anyone about it, Ashamed to mention the phrase CFS/M.E. ? to anyone. Believing my problems couldn't be thyroid related as that was 'fixed' with replacement.
Then i read the Patient Testimonies used at Dr Skinners GMC trial, and the petition to the Scottish parliament, and the Liothyronine dossier, for the House of Lords. And the Scandal of current CFS/ME 'treatment'
And i stopped feeling like a useless hypochondriac.
I found similarities in my case and others, that were striking.
I still haven't got 'better' ,and my intended course of action has been postponed for a while ( no money, thanks to global pandemic !) and anyway, i might not get any better than where i am now.
But having done my own reading on 'the science' , and found the clever folk on here, i do at least feel a bit hopeful again, and confident in myself .
.......But one thing i am sure of.............. it was Doctors and consultants and specialists who made me feel that bad about myself, and it definitely harmed me ....... so much for 'First do no harm '......... Don't let them do it to you x
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