Thyroid UK
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Extreme Fatigue/Thyroid?

For about a month now, I’ve been suffering with some really debilitating fatigue/tiredness/weakness. I sleep 9+ hours, but I wake up still exausted, and it’s this CONSTANT, lingering, never ending Fatigue. I feel it Constantly, 24hrs a day. 7 days a week. It never ends!! I’m so constantly tired that I am having trouble keeping my eyes open.. This is paired with virtually NO motivation to do anything ever, I just want to lay in bed and sleep... I now have a non existing Attention Span, and no Stress Response either... which sucks. But the Fatigue is so bad that just going for a walk gets me exausted....It’s been the worst kind of fatigue ever, and I’ve just never felt like this before... I look back at my struggles before this, and there were some, but never the debilitating Fatigue. That one has never been too much of an issue up until a month ago, when it all started...It feels like a complete lack of energy, both physical, and mental. Like just some painful state of drainage, like I feel like something is seriously wrong!! I’m just too exausted...and muscle weakness too... Also flu-like symptoms, tingliness in hands, etc. Many days it feels like the day is over before it even began. The brain fog is terrible, can’t even think straight, and I can’t do the activities I once enjoyed because I’m out of breath so fast. I’ve had to call in sick to work this whole time, multiple ER visits, changed GPs, done any possible blood work. It was all fine. and I have very bad Brain Fog from it, I’m basically a vegetable, every day is the same even just thinking hurts... and the catch is that IT IS NOT GETTING BETTER. It’s staying the same/getting worse... every day is the same story... I’m tired and demotivated after everything...

My question is: Could this never-ending Fatigue be a symptom of hypothyroidism?? Or is it something else?? I was started on T4 and T3 about a month ago, due to low T4 and T3: could a low T3 be the cause of the Fatigue? They were very low when this began. and I have noticed lots of improvements in the physical symptoms (hair loss, thinning eyebrows, weight gain, etc), but not really the whole “Fatigue” aspect of things. Just mild improvements there. That’s why I’m starting to question if it really was the thyroid that caused it... or what else could it be. So my question was: can it take longer than 4 weeks, for T3 to start doing its job (I’ve tapered to a pretty high dose too... I’m on 25+25mcg of it daily...) If yes, then Thyroid wasn’t even the issue and so what could it be then? I’ve looked into everything. It’s not Anemia, not B12, already taking supplements for D deficiency, etc. but I’m still very very sick and fatigued every day :(

EDIT: Just wanted to say THANK YOU all SO MUCH for the overwhelming response!! if you just landed on here from the internet, because experiencing FATIGUE, please read all of the replies in this post because they are all extremely helpful!! and informative!! I learned so much from these replies! THANKS A TON AGAIN!!

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You have all my sympathy. The truth is adressing an underactive thyroid is a slow old business. Someone once told me it takes as long to make you better as it did ill. I think in truth it took me longer. You are on a considerable wack of T3 for a starter dose at 50mcg per day. Why did they put you on T3 only?

The body will take time to repair itself. Your metabolism will take time to slowly wake up. In the meantime rest is important & its vital you listen to your body whilst it slowly recovers.

In the thyroid world a month on treatment is a short period of time. Your doc should check your thyroid hormone levels in 6-8weeks time.

You need to be patient & give yourself time to recoup & recover......frustrating though I know that is.

Hope you start to feel better soon.

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Thank you sooo much for this reply! It means the world... I was put on T4 only actually. I added the T3 in myself. (The Dr wouldn’t himself). I was told that some people were taking higher doses and that that had helped them, so I followed that advice, and slowly went up to that dose, starting with 12.5 per day...it took some time to get to that, and stuff. & I know rest is important, but no matter how much of it I get, I’m still fatigued. And I have work to go to... so it’s all a mess haha. & yes, thank you so much for that, I really appreciate it.

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Hi, I have Hashimotos causing and underachieve thyroid. I’m on 125mg if thyroixine. Fatigue is my worst symptom. I’ve tecently gone gluten free. Within days years of extreme fatigue improved. Worth a try

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Post your thyroid test results when first diagnosed with a thyroid problem and post your most recent results and people will give you some suggestions. Make sure you include the lab ranges and state which country you live in.

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They were: TSH: 1.25 (0.32-4.00) T4: 12 (9-19) T3: 3.3 (3.1-6.2) I really believe I was one of those people who started experiencing symptoms before it reflected on TSH, because I was already experiencing all of the symptoms... the second time I got re-tested the TSH jumped to 2.50. I just need to know if the lingering, never ending Fatigue can be a symptom of T3. Or if this is entirely something else. But what then. I’ve literally looked into everything to no avail. I’m praying it’s Thyroid related because I want it all to stop I just want it to end... I’ve been suffering so much this past month, I can’t even describe. I just want this T3 to kick in or something... :( I’m just so tired of being tired

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It would be a good idea for you to test privately Blue Horizon Thyroid 11. Take the test first thing on an empty stomach. Leave off your medication for 24 hours before the test.

Post you results on here including all of the ranges too. Also state exactly what and for how long you have taken any supplements or medication.

I felt like you after the removal of my thyroid I had gone from walking, swimming yoga every week to having to be lifted of the floor, then I joined this site and followed the advice to the letter. I now self medicate with NDT and feel well. I am 72 years old.

Good Luck

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I'm sure you have read on this forum that vitamins and minerals have to be at an ideal level too, notably Vit D, B12, folate and ferritin. You mention you've had B12 and VitD looked at , but were they in the upper part of the ranges, not just ' normal' as this could still mean too low for hypothyroidism? Are you Hashimoto's with autoimmune thyroid disease, as absorption in the gut is frequently impaired making natural vitamins/minerals in food /drink and through supplements severely compromised (See SeasideSusie's posts for regular relevant information). Do you mean 2x 25 mcg T3 doses per day, or 1x 25 mcg T3 and 1x 25 mcg T4 a day. It's a very slow progress getting better unfortunately, but since you are near the start of your journey it might be quicker than most. Post your results and forum members will give you lots of advice for good future thyroid health.

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Oh my gosh, thank you so much for this answer, you’re a life saver. This was extremely helpful/useful information! My B12 was in the upper, but vitamin D was Low, so I’ve been taking about 8,000im vit D daily, but haven’t noted improvements in energy levels... so I don’t think it’s Vitamin D related. but I really really really wish it was cause I’m still so fatigued... I can barely leave the house, and I can barely even do stuff anymore, which is insane, just really debilitating, sad, annoying, and unfair...and been feeling like this for a whole month already, it’s been Every single day... so it’s like really bad and despairing and stuff still. idk why I’m still not getting better, it’s been a month of treatment. (I’m also taking a whole lot of Adrenal Support supplements, Vitamin C, b6, Vitamin A, etc) But I must definitely must look into the gut and stuff because I do believe perhaps “nutrient absorption” is where the problem lies, because it’s a general lack of Energy and it’s connected to everything... so stuff must not be getting absorbed properly or something! I’m actually on 1x100mcg of T4, and 2x25mg T3; so it’s like a lot...is that too much? should I cut some of the T4 out or something. I’m afraid of any withdrawal effects. I realize that might be a bit too much, wonder if I’m over medicating and that’s causing symptoms?? Don’t think so, really, it maybe I should be lowering some of this, cause it’s a bit high... I just don’t know what’s happening to me... every day is like living in hell. From the beginning I mainly attributed it to the T3 being so low... I was told that was the most likely cause of symptoms. But I wonder if it’s just something else. I just couldn’t pinpoint what was causing the Fatigue... I wonder if it’s just CFS. (My T3 was 3.3. Range was: 3.1-6... so it was very low..)

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Hi andy97. Oh yes! You sound very hypo and your never ending fatigue is probably from your levels being too low, being under medicated and or Hashimoto's. If you have all of those symptoms, your thyroid hormones are no where near the optimal part of the zone. Some of your symptoms also sound autoimmune in nature. What are both of thyroid antibody levels, TPOab and TGab? Your symptoms might be from high antibodies, and unaddressed autoimmune disease.

How long were you on 50 mcg levo before changing to 100 mcg levo plus 50 mcg lio? Are those lab results now, after a month on your current medication, or the results right before you started medication in the very beginning? If they are now, you are very under medicated. If this was at the beginning, you were very hypo and still are. TSH: 1.25 is too high if on the right dosage of medication. Your TSH should be suppressed and it's not. Your T4: 12 (9-19) is much too low in the range. It should be at least 1/2 the range, or at least 14, but not higher than 16.5. T3: 3.3 (3.1-6.2) is barely in range and is much too low. It should be close to 3/4 range, which is 5.425. You're a long way from that number.

You're four weeks into treatment? Your next blood test is at 6 weeks. From the sounds of all of your symptoms, your FT3 and FT4 are still not optimal. One or both could be too low, or one or both could be too high (probably not, judging by your symptoms). If one is high and one is low, you will have hypo symptoms. Too low in range and too high in range is where the majority of the symptoms live.

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Ok, so that’s a start. Thanks a lot for that advice. I really hope that’s the case, cause I’m tired looking for answers... & yes he upped it fast weekly basically until we got to 100mcg cause that was the right dose, and I kept complaining of symptoms. The T3 I added in myself.. Antibodies were actually low. but no, those aren’t the updated results. Those are results as they were a month ago; when it all began. No idea what they are now, need to get retested. Thank you, really, for the very careful, and useful explanation. I knew some of it and some it’s been great learning about. Thank you so much!!!Idk though, I am Just still a bit confused if Thyroid really is the cause of the symptoms, all on its own, or if it’s an underlying issue. For sure the hair loss, puffy face, dry skin, etc, they’ve all improved, so there were loots of physical symptoms, which was indication that thyroid was the issue 100%; just don’t know for sure if there isn’t something underlying.

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Oh. That's too bad. Medication is never to be increased that quickly.

Both antibodies need to be tested. What were the results?

YES, your thyroid really probably is the cause of most or all of your symptoms. You thyroid hormone levels are sub optimal and you are taking crazy high amounts of T3 and your level is still really bad.

Yes, it there could be something else going on. The obvious is that your thyroid levels are way too low, you're taking that crazy high level of T3 with no response. Could very well be Hashimoto's. Need to know if it's Hashi's and if that or something else is the cause.

What are your Vitamin D, complete iron panel, B12 and folate levels? These might be sub optimal, too.

Have you had any type of illness lately? Have you ever had any illnesses or infections since you were born?

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Andy 97, I see reading below that you are taking even more T4 and T3 than I thought! Is your present dose really from no medication about a month ago to all this T3/T4, adding more medication and no blood tests? Your poor body wouldn't cope with that even if you are actually on the dose you eventually need many months, even a year, down the line.... you do have to be on one unaltered dose for 6 weeks for bloods to be tested, then adjust up or down. As stressed your vitamins/ minerals have to be in a good upper range too, before trying to fine tune your Thyroid med. ; you will have to be patient, even if your doctor seems to be allowing you to run fast - it won't work! Many of us understand your symptoms and problems, and have learnt from experience it is disabilitating...good luck.

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Edit: NO, I haven’t or not that I’m aware of! Maybe it’s like Lyme.

The T3 that I added in mysef, but I did increase pretty slowly. Thanks a lot for this, you are 100% right. it’s been very disabilitating though, you are very right about that. Thanks so much for being so understanding!! All of your information has been extremely helpful as well. I will keep an eye out for vitamin levels.

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To have increased T3 by 25mcg, doubling your dose in last 19 days is definitely not a slow increase

It's always advised to only increase T3 by 5mcg (6.25mcg) and wait 6-8 weeks, retesting bloods, before even considering a further increase.

At same time you have also doubled Levothyroxine, increasing by 50mcg. Again max increase recommended is only 25mcg at a time, waiting 6-8 weeks and retesting.

Also we should only increase Levo or T3, not both at same time

Such rapid and possibly unnecessary increase can be cause of exhaustion and potentially dangerous too

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Thank you, yes, I definitely am on a too high dose right now, which is adding on to the fatigue... and perhaps making things worse...I will be looking into lowering and making things more smooth of a transition... slow and steady increases are always the way to go.

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Reducing dose can make you feel grim, but will need to just battle on through

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50mcg of T3 is equal, approx, to around 200mcg of levothyroxine

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Hi Andy. Sorry to interject , I had my thyroid removed (partial) 18 months ago and share the same awful lethargy that you have. Levo is not working out for me at all : dosage went from 25->50->100. Going to see my GP today and ask advice regards T3. Could you recomend an online pharmacy for T3? I am in the UK and beleive i read somwhere that some reputable suppliers are in Germany.

Cheers

Eddie

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I also have extreme fatigue, I am on 125mg levo. I also take Vit D supplement.

Doc said folate and ferritin was not offered for testing. I started off hyper, was treated with radioactive iodine and have never felt well since. I asked about T3 but was refused. Doctor says results are ok no further action required

Thyroid function test

Serum free triiodothyronine level 3.70 pmol/L [3.1 - 6.8]

Serum free T4 level 18.6 pmol/L [11.0 - 23.0]

Serum TSH level 0.79 mU/L [0.27 - 4.5]

Note revised TSH & FT4 reference ranges as from 11.7.16

Serum thyroid peroxidase antibody concentration 117 IU/mL [< 34.0]

Outside reference range

result of vit d test below.

Serum total 25-hydroxy vitamin D level 63 nmol/L

Vitamin D is seasonal but levels should be >75 nmol/L

at all times. Levels 50-75 are probably suboptimal,

long term may lead to clinical effects. Consider safe

sun exposure, diet, supplement. Levels 25-50 indicate

deficiency, supplementation is indicated. Levels <25

suggest severe deficiency-may need pharmacological

preparations- in which case serum calcium should be

checked after 1 month. Toxic levels of vitamin D are

not well defined but advise check serum calcium if

25 OH vitamin D exceeds 300 nmol/L and consider dose

reduction if appropriate.

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Sorry Lynne you would be better off posting this separately as a new post, as putting this as a reply to me means I am likely to be the only one, or one of a few, to read it! It's not really a continuation of Andy97's post. I am not the person to ask re hyper/ radioactive iodine treatment. If you repost the results make it a bit easier to read- remove the 'extra' wordy test info., and date the results . If it were just hypothyroidism I'd have said , from personal experience, your low Vit D level needs treating , your ferritin and folate need testing as does B12, you have Hashitmoto's antibodies, and T3 level is low as though you are not converting to T3 properly. Perhaps private full thyroid blood tests and D,B12, folate and ferritin would be worth having, and then consider getting T3. You need extra advice from the forum as I am not familiar with the way your thyroid problems may develop and get solved!

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It's absolutely essential to stick on same dose for 6 weeks and then retest

Your post from 19 days ago says you were on 50mcg Levo and 25mcg T3. You really should have stayed on that for 6 weeks and retested, before increasing. Even that was a high dose to start at.

You have now doubled both Levo and T3 dose

greygoose advised you not increase dose in reply to that previous post, or only by 6.25mcg T3 maximum.

How long since you increased dose. Dose increases should be incredibly slowly. Always waiting 6 weeks each time

Taking too much can leave you feeling extremely exhausted, as well as too little

Usual recommendation is 50mcg Levo as starter dose, on its own. Then increase Levo in 25mcg steps, retested after 6-8 weeks each time, until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Getting all four vitamins optimal essential too

Only then, if FT3 remains low are we ready to start on small dose T3, 5mcg or perhaps 10mcg max (perhaps in split dose). Retesting after 6-8 weeks

Increasing too fast can cause total exhaustion.

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, and if on T3 don't take in 12 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

It's not a quick fix, it takes many weeks for full effect to happen. Good vitamin levels are essential and also take a while to improve, especially low vitamin D.

Important to test vitamin D, folate, ferritin and B12

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Excellent summary, thank you for the info and advice. I'm hypo in France and staying hopeful with the community support here.

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Need to see the print out of bloods at the beginning and recently. Sounds like you could have multiple problems from possible b12 deficiency....tingling and numbness. Weakness....iron? Perhaps combined with the thyroid problem. Sounds like autoimmune too.

You could get your own bloods done, just need a small amount of blood from a finger prick test at home and you get results online in two days and a decent doctors opinion online too. Good luck.

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Woah, great answer, thanks a bunch for that! Yeah I know, Ive always felt it like “multiple problems” was always the case with me, it’s just been too disabling.. B12 was tested a while ago and it was fine, same with iron though, meaning there was no sign of Anemia. I never did a full panel Iron test though, which was suggested to me on here, and I definitely should run that. A lot of it sounded like symptoms of Iron deficiency although blood count came back fine and he ruled that one out. He never suggested the full Iron panel. It is not autoimmune (or at least wasn’t last time I tested), I should really get retested...including a CBC again, it’s been a month and my GP is weary in ordering too much blood work too soon...

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You need to let the experts on here see the results as 'fine b12' is rarely fine. My brother has paralysis in one leg, arm, and hand because they said his b12 was fine and just gave him folic acid which precipitated Subacute Combined Degeneration of the Spinal cord. He needs a wheelchair now, they put it all down to M.S. Some folk need far more nutrients for various reasons. The doc tested my Thyroid Antibodies but only TPO not Thyroglobulin antibodies one was fine but when I got the latter done privately it was 500...top of the range is 115. You can take a photo of your results and post under the writing on a new post. You will be amazed what we are fobbed off with as being fine.

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thank you, I will try and do that.

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If not autoimmune then diet plays a huge part in getting healthy tsh results which in tern will give you a better metabolic exchange.

For me the higher my tsh the easier I lose weight. More than liver health, for me. I need lots of weight off.

Endocrologist believes my diet is what helps me stay the healthiest.

Underactive thyroid is very susceptible to influence from the right diet.

Nutrients should come from the right diet but if not supplements work very well too.

My diet has been poor lately due to finances but now back on track. Looking forward to weight loss again.

And more energy. I get wiped out of energy or just wake up very very tired and stay like that. I am iron deficient anaemic but taking iron supplements for 2 months and due a check to see how I'm getting on.

More blood tests. :(

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I know that feel. That’s exactly how I’ve been. I wake up after 10+hrs sleep but I’m still tired... and I need to nap every few hours!! It’s so strange to be like that...just this unnatural COMPLETE lack of Energy and exhausting Fatigue. Like really, am I Dementor? like something is SERIOUSLY wrong with energy production/maintenance. Things are getting sapped, I am losing myself and my freedom. wonder if I’m just Iron anaemic, but it hasn’t been showing on blood work, that’s the thing. I was told Iron was fine because my red blood count was fine, etc. he just said it was fine. Could it be that it didn’t show on a full blood panel?? How long does it take to show on a blood panel, meaning if it didn’t show a month ago would it show now? How did you find out you were Iron deficient? I just want the tiredness to end... it’s like this physical sensation of exaustion...today I slept most of the day, when I’m awake I can BARELY THINK straight, no attention span...really, I’m losing myself. It’s getting worse. By the day... like my MENTAL functions are gone. And so are physical. and I baaaaarely survived through work.... I want it to end

EDIT: I am also currently MESSAGING some of you, for a bit of an open discussion. You are all free to do the same, to learn from each other! Let’s use this MEGA POST to help each other out/learn from each other. There are SO MANY PEOPLE ON HERE SUFFERING WITH SIMILAR SYMPTOMS. AT LEAST 5 people said they have similar symptoms. (fatigue, weakness, etc.) This is an epidemic, but we have THINGS IN COMMON. FEEL FREE TO CONTACT EACH OTHER!! We can beat this!! There are so many things we all have in common. It has to be something... WE CAN BEAT IT.

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I couldn't get enough blood out of my ten digits to fill the two phials for 11 tests for full thyroid and folate, Vit D, B12, ferritin etc, despite being used to self pricking as I am diabetic. Might be worth considering getting phials filled from blood draw when GP surgery doing what they are able to do eg TSH (cos saves money, else they charge for private blood drawing).

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Also absolutely essential to test for high thyroid antibodies if not been done. TPO and TG thyroid antibodies. If high this is Hashimoto's also called autoimmune thyroid disease

Gluten intolerance is common with Hashimoto's and malabsorption

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Sorry Andy, I know you are feeling dreadful and can't see any light at the end of the tunnel but everything works very slowly in the Thyroid world and we can't really speed it up. If we try we can end in in a mess that can be difficult to untangle. At the start as well our bodies sometimes object and can try to fight back. Sometimes it's because we are throwing things at it too quickly or it. An BE because something in the fillers we have an allergy too so both very good reasons to take things slowly and not change more than one thing at once. You may even be someone who doesn't actually need T3 and that once one the. Orrect dose for you your body will Happy convert the T4 for you without any extra help as it should.

So normally we should start off with 50 mcg of T4 (Levo) and stay with that for 6 weeks and then retest. You probably wouldn't feel any difference for 3-4 weeks but each new dose takes 6 weeks to fully get that dose into your body. So 6-8 weeks to retest and you will get a new dose if need be. Doses go up in 25 mcg and then this whole process is repeated until you are on the correct dose for you. Taking too much can feel worse than taking too little.

Have you stayed on any dose for 6 weeks? If not you really have to start again so that you know what is happening. It can take up to 6 months and as I said earlier rushing it can get you in a mess.

Another thing equally important is to get your Vit D, B12, folate and Ferritin tested. These help your thyroid to work better but they have to be optimal so print your results and ranges. If you search for SeasideSusie's posts she has the optimal levels and how to achieve them but again this takes time.

When ever you post any results put the ranges as well as these can differ from lab to lab.

Patience needs to be your word to remember but you will get there, just takes time. Once you know you need to take vitamin supplements then you need to keep taking them as levels can drop very quickly.

This forum is run by Thyroid Uk so have a look at their site for lots of useful info which will help you.

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Is it possible you have sleep apnea? It turned out I had both untreated hypothyroid and sleep apnea, and the extreme “bone tired” exhaustion started to lift once both started to get under control.

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Yeah, that’s a great one, thanks a lot for that one!! I’ve been recording myself sleep and I do not snore, nor exhibit signs of difficulty breathing at night, so I ruled that one out. (thank god for sleep talk recording apps.) I had wished it was Sleep Apnea...Doubt it is, because I don’t snore, it sounds like a peaceful sleep.

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Make sure your blood calcium levels are ok. I had all this before and it was a parathyroid tumour (almost always benign)- had it removed, but now I am hypo. Symptoms are very similar.

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I have done a thyroid ultrasound, and nothing was found. So sadly, it wasn’t that...Something like that would’ve showed in an ultrasound, right?

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No - you need calcium levels checked - tricky as they have to be checked within 30 mins of the draw I seem to remember so done at the hospital. US wont show - only thing is a Sestamibi scan but as radioactive they wont do that until they have found consistently high calcium levels over a series of tests.

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Excellant advise from others.

The truth is that in this race it truly is the tortoise that wins the race. Andy if you try to jump the gun as you clearly have you will end up having to probably restart. The problem in the thyroid world is that the only way to suceed is to slowly and methodically make small interval changes. This is not only to give your bodys metabolism time to slowly awake from its hypothroid state, but to find the correct dose for you. If you rush this you will get confused your body will not have had time to adjust to each dose so you are highly likely to end up being over medicated.

Being over medicated causes fatigue, high pulse rate, sweating, loose bowels, tremor, temperature increase.

You seem to have jumped staight into t3 and levothyroxine. The usual protocol is to start with levothyroxine and slowly build that every 6-8 weeks adjusting following blood tests, noting signs and symptoms. A careful log is also useful so you can look back on blood test results. On the log make note of what supplements you are taking and the timings. Alongside how you feel. This give you info on how you are responding and trends. This may seem tedious but this careful logging, methodical approach produces results the most efficiently.

Not everyone needs T3 adding or needs to use a ndt. Only a few people need T3 only. Lots of people do do well on Levothyroxine.

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Could this be me/chronic fatigue syndrome,was extra fatigue apparent after a viral infection

Me often has hypo related issues

Check dr Sarah myhill’s web site

All the best

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Hi suradeva. This is an interesting point! Thank you! If she has Hashimoto's autoimmune thyroid disease as a cause of her hypothyroidism and she has a viral or bacterial infection, this will increase her thyroid antibodies. When thyroid antibodies increase (which means a stronger attack on the thyroid), then thyroid hormone levels go down. So yes, this is possible but it's not ME/chronic fatigue. It's hypothyroidism caused by Hashimoto's, with thyroid antibodies increased due to viral or bacterial infection. Me/chronic fatigue are symptoms of hypothyroidism.

Her thyroid levels (shown above as FT3 and FT4) above are sub-optimal and are too low, which causes all kinds of symptoms. If her levels where in the optimal zone of the lab range, she would probably have very few symptoms.

Have you been tested for Hashimoto's, too? These tests are called TPOab and TGab.

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I’m honestly starting to think it’s just ME because today had been way worse than before. to the point that I can barely get out of bed in the morning anymore, until it’s the afternoon...I can’t move my muscles!! Waking up extremely unrefreshed...and I then need multiple naps through the day... the energy is just not there anymore. Even just reading stuff is a chore... any sort of mental task is really really hard...It’s been like being a ZOMBIEor something...Undescribeable decline in everything... Either I’m over-medicating Thyroid, or it’s Iron Anemia, or it’s ME at this point (caeliac disease sounded good until I realized I barely eat any gluten...) Today has been THE WORST day by far. Just like, wow, I see myself declining some more. It’s so sad to see. I keep letting everybody down... I have no motivation for anything, no energy, and absolutely no attention span whatsoever left!!! Chronic, debilitating Fatigue has taken over. God help me now. Does this sound like ME? Problem is I haven’t had any Viral infections. Not any that needed to be treated...I keep looking up viral infections but I can’t find any that I’ve had!! I haven’t kissed anyone so it’s not momo, or whatever, so I just don’t know in God’s name is stealing my energy!!

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Hi Andy,

I'm in a similar position to you so was interested in reading your post and replies. As already mentioned by these lovely people, your thyroid needs support of vitamins and minerals to both work well and to help absorb your medication.

You could get a print out of your recent results, as Marymary7 mentioned and post on here. Selenium is also important in thyroid function and this can be included in private thyroid tests.

Regarding your vitamin D, you need to know your actual result is. The minimum for health should be 125 nmol/L and the optimum if you have autoimmune disease such as Hashimoto's is 250. You may still be far from those amounts and that in itself may be contributing to your symptoms.

It is so much a juggling act and you need to be your own advocate to ensure that all your cofactors/your vitamin and mineral levels are all optimum. Ferritin, your iron stores, could be contributing to the fatigue so knowing your actual levels for all is a good start.

Then it's taking the correct type and dose of iron, vitamin b12 (sublingual tablets if there is an absorption issue) and vitamin D to ensure absorption. Vitamin b12 deficiency is poorly treated in this country and poorly understood by many GPs but this is important again in thyroid function and energy production. Deficiency affects all body systems. Levels of under 500 can cause neurological symptoms. The PAS pernicious anaemia site on here is also very helpful.

Vitamin D is the only vitamin that acts like a hormone and as it's fat soluble, you need a softgel tablet, taken alongside k2 to ensure that the vitamin reaches your bones and not the soft tissues and arteries. Magnesium glycinate helps absorption. There's a good Facebook group, Vitamin D Truth + More with an excellent protocol with recommendations of the best vitamin D supplements.

After seeing my second endo last week, I have finally been prescribed levo. I have high positive TPO antibodies but blood results are considered in range and TSH is 3.85 so GPs x 3 refused to treat. I'm now on 75mcg alternate days for a week then daily before I return in 6 weeks. My legs already are less heavy so I'm starting to walk better and my breathing is less of a problem. I think I was much luckier than you in that I had recently self treated my b12 deficiency and knew that my vitamin D was borderline at 63.

As others have said, it does take time as it wasn't overnight that we started to feel bad. I have cut out gluten and reduced dairy in the last 2 months which has helped my breathing problem. I've gradually returned to work so I can assure you Andy that things do get better.

Oh and be careful with b6, high doses can cause neurological symptoms!

Take care.

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Thank you so much for this. My Vit D was indeed low, so I’m working on raising that. B12 was fine...I am taking Selenium as well. Thank you for this advice, as well.

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You're welcome.

B12 needs to be at least 1000.

I hope you're feeling better soon.

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Hi Andy - just a quick reply as I only have one thing to add. I felt EXACTLY as you describe - just before my GP took a punt on testing me for coeliac disease. Bingo! I had no other classic symptoms.

My Hashimotos is well controlled.

You may already have had a test but it's worth considering a full screen with all the Iga's . Good luck 😁

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HI Faquestions. Very good point about once you have one autoimmune disease, you have a greater chance of having more. She could definitely have another autoimmune disease, but first her thyroid needs to be properly medicated so that she has optimal levels of thyroid hormones, to help take the strain off her thyroid from being attacked, as well as hopefully reducing thyroid antibodies.

It's always a good idea to test for other autoimmune diseases once you have acquired one and are having symptoms.

:-)

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Hi... lots of good ideas and suggestions but haven't seen this option. You say you sourced your own T3? I am just wondering if your T3 meds are legit.. and not counterfeit? I guess if I were you I would try some T 3 from another source and see how that goes. I agree that it seems that the T3 you are taking just isn't getting into your cells.

How long has it been since you had your labs done? If it has been 6 - 8 weeks, maybe time to have them done again.

The only other idea is for you to have your iron checked. I think there are 3 - 4 different iron values that are checked. Low iron can also cause profound fatigue.

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Hi phoenix23002. Her FT3 and FT4 are sub-optimal in her bloods posted above. T3 getting into her cells could be due to Hashimoto's, but we're unclear as to if she's had both antibodies tested or not, TPO and TG.

I agree that sub optimal iron levels could cause fatigue. Judging from her levels, it's probably due to being under medicated, and possibly from undiagnosed Hashi's, so untreated Hashi's. A complete iron panel will show her iron status.

:-)

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I don't call 50 mcg of T 3 being undermedicated. The exhaustion could be from something else??? mono for instance? The T 3 isn't getting into the cells for whatever reason such as pooling. Hashis could be a factor especially if the body is attacking the thyroid hormones even as it attacks the thyroid gland.

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Without knowing current thyroid blood results, it's impossible to say. If she has high thyroid antibodies TPO and or TG, this can interfere with conversion. We don't know her status on those antibodies. It's possible to have conversion issues without having an autoimmune disease.

Any illness could cause conversion issues, and then any illness could also trigger Hashimoto's. Having had known or unknown EBV, CMV, pneumonia, Lyme, strep, candida, to name a few. Just about any thing that the body doesn't agree with or that causes immune system confusion could trigger Hashi's, too.

In Hashimoto's, thyroid antibodies attack the thyroid, which interferes with thyroid hormone production and causes insufficient hormone levels.

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Are you related to andy? You are answering for him/her? Just curious if andy is getting a chance to read all the responses and good information others are sharing. And you speak to many of us as if we are in dire need of education re: thyroid, thyroid meds and thyroid disorders. Like I said... just curious.

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Hi pheonix23002. LOL! You asked me a question, remember? I was responding to your post, phoenix23002, which was a response to mine, as indicated above. You asked about mono. I agreed and included other illnesses or causes, because there are many which are often overlooked. Sheesh, don't shoot me down for responding to your question. :-(

It's all speculation without current tests. Determining if medication is adequate, under or over what is needed can only be determined by blood tests and symptoms, not by the current dosage. I don't make up this standard.

If you're going to post information about Hashimoto's, please make sure you understand what is getting attacked. ;-)

:-)

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what is getting attacked? A quote... "However, in some cases patients do feel better with synthetic hormones. One reason for this is that a small subset of people with Hashimoto’s produce antibodies not only to their thyroid tissue (TPO and TG), but also to their own thyroid hormones (T4 and T3). These patients do worse with bio-identical sources because they increased the source of the autoimmune attack." I am assuming from this that not only can the thyroid gland be attacked by the body but also the thyroid hormones themselves. chriskresser.com/3-steps-to...

As for you responding to a question of mine?? I wasn't asking you a question when you first responded to MY post, not the other way around and I was addressing my post to Andy at the time. Oh well, good of you to step in. I am sure he appreciates it. :)

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Chris Kresser. Oh. He doesn't site his sources. Can you point me to that supporting study since I can't seem to find one?

This is a discussion board. People don't have to ask questions to receive a response. It's an open discussion. That's how it works. Check the streams of dialogue of almost every post in all forums and you'll see the same. Dialogue to try to help the OP is not "stepping in", I'm sorry you think so.

If you don't want someone to respond to your comment on a public forum, then send a private message to whomever you are attempting to address. :-)

Andy issued an open statement to try to get to the bottom of his symptoms and thyroid disease problems. The only way to do that is to get the facts thru complete diagnostics. Iron does not appear to be the main issue here.

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Hi, yes, I am still just reading other’s replies!! because a lot of them have been extremely helpful!!! I’m in awe and shocked at this post’s popularity and how helpful people have been!! Thank you all SO MUCH. I would not have been able to figure these things out on my own!! No way! I’m just in the middle of taking notes and adding to my research and replying where a reply is due. and re-reading! I’m sorry for this, we are in different time zones. And please don’t fight, it’s all good. We can all see the replies. It’s all under control. I am honestly just so so grateful to all of you, for all the advice and information given to me!! Thank you all so very much. I don’t want to reply to every single post because it’s easier to read when I don’t, and I want others to be able to read and be informed as well!!

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Hi andy97. You're welcome. :-) What supplements are you taking? Are you still taking iodine, or did you stop when greygoose said you shouldn't take iodine a few months ago?

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Hashis could be a factor especially if the body is attacking the thyroid hormones even as it attacks the thyroid gland.

Sorry, but that's not how it works. The body doesn't attack thyroid hormones. Just the gland.

And, if such a thing as 'pooling' exists, it would be the result of thyroid hormone not getting into the cells, not the cause. But T3 would hardly pool for long, because it only stays in the blood for about 24 hours. :)

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Hello,

I'm so sorry for what you're going through. Have you try changing your diet? Being gluten free can make a big difference. It will be a good start along with all suggestions above. Courage!

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Hi Pastry. Her free's are both too low, so she's under medicated. This could be related to Hashimoto's. Gluten, soy and dairy fee diet is recommended for Hashi's. Taking out gluten can help eliminate some symptoms but it won't increase free levels of thyroid hormones, unfortunately.

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"Was" under-medicated, but since that test she's rocketed up the dose of Levo and T3 too fast and too far. Extreme exhaustion comes from too much medication. Especially too much T3. I know. I did it.

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Hi FancyPants54. I hope she comes back soon to clarify the dates of tests, when dosage was increased, how long at each level, and all the other details. Details are scattered. Without current and complete tests, we don't know what her current levels are.

She said "They were: TSH: 1.25 (0.32-4.00) T4: 12 (9-19) T3: 3.3 (3.1-6.2)", but then said "the second time I got re-tested the TSH jumped to 2.50.". Whenever that second test was, she was under medicated at that point. We need to see the corresponding FT3 and FT4 and know the medication dose at that time. Since she hasn't included the details or time frames, we're unclear about when that test was and where it fell with taking T3, and taking a lot in a short period.

I agree that this could be T3 related and that too much medication can cause all kinds of problems. 50 mcg of T3 is a lot!! Especially when it's taken with 100 mcg T4. The standard starting dose of T3 when taken with T4 is 5 or 10 mcg and is only increased in increments of 5 mcg every two weeks, as needed. Then retesting all levels at the 6 week point.

As a comparison, I've been on 88 mcg T4 and 15 mcg T3 for several years, my levels are all optimal and I have little to no symptoms. After several years, it was only just recently that I increased to 100 mcg T4 and 20 mcg T3, due to my antibodies increasing from several winter illnesses, which resulted in my free's decreasing. When ever my FT3 has been too high (if much too over 3/4 range, it's too high for me), I had symptoms, but mine were not hypo symptoms.

Her symptoms might be caused by untreated Hashimoto's. She needs to test her TPOab and TGab to determine if this is the cause of her thyroid disease.

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If you read the bottom of her post, she says that she was "started on T4 and T3 about a month ago". And she goes on to say that she's titrated to a pretty high dose of "25+25 T3". So she's gone from no T3, to 50 T3 in 4 weeks. That's immense! It's not absolutely clear if she was taking any T4 before that month ago point. And her issue is feeling exhausted for one month as well. So something about the treatment isn't working.

I tried using T3 only following the Recovering with T3 protocol, but because my signs and symptoms didn't change as they should have to guide me, I ended up on way too much and could barely function. I still thought I was under-medicated because that's how it felt.

When adding T3 to T4 the testing protocol is different to that of T3 on it's own. But that extreme exhaustion sounds just like me. She's gone way too fast. If it were me I'd stop drop the T3 down, stick to the lowest dose for 6 weeks and retest. And if she were not on Levo before a month ago, she needs to go back to whatever dose her doctor prescribed. In my opinion. I think this is a classic case of rushing things.

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Hi FancyPants54. I agree that this could be the possibility here.

:-)

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Ok, so sorry in the delay in responding to this. There is a time zone difference. I am getting back at you guys now!! I just wanted to say, first, that I’m overwhelmed by the response, and I thank you all SO MUCH for being so helpful and understanding!! I am replying to your posts as fast as I can now!! a lot of this has been extremely helpful! SO thanks SO MUCH everyone. just quickly pointing out that I am a he btw, not a she, i am male. ;) Anyways, In terms of Hashimoto’s: I do not have it actually, I don’t think. The antibodies came back <10, so they are within range...surprisingly. This was tested about a month ago and never again. that’s why it’s still a bit confusing as to what could be causing the low T’s, that’s because most thyroid issues are from Hashimotos... at first I thought it was the Adrenals, but don’t think so anymore. so it’s all still kinda confusing. But the replies on this have been amazing and insightful. Pointed me in the right direction and helping me beat this!!! you asked what my 2nd test was; it was done 2 weeks after the first, and the results were: TSH: 2.75, T4:12 (9-19) and T3: 3.6 (3.1-6.2) im really wondering also maybe, at this point if Leaky Gut maybe could be the cause of this as well... that’s the only other real answer, based on the endless research I’ve done... I’d hate to just settle for something like CFS, I really would, cause the Fatigue is still there, even after thyroid treatment. Like I woke up this morning and I’m very much so exausted for no reason. That’s how I know something is still very wrong. It has to be some kind of nutrient malabsorption maybe, just some kind of nutrient absorption issue in the gut? Something definitely is still not adding up, despite all the time treating the Thyroid. Either way, let me finish replying to your other posts and other’s as well. And thanks so much, really :) I will get to the bottom of this.

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Hi andy97. Sorry we thought you were female! Your posts are very difficult to read and follow because they do not have normal paragraphs. Under the 'More" tab there is an edit option where you can go back and edit posts. Ok. Let me see if I can read this and make sense of it.

;-)

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First off, there are two thyroid antibodies tested, no just one. Did you have both tested? They are called TGab and TPOab. If one was not testing, then you don't know if you have Hashi's or not.

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Yes, it was exactly TGab and TPOab, last month they were <10, so it is not Hashimoto’s, which is Confusing, definitely. Why would T3 and T4 be so low then...no clue. But, I do agree that my free’s are pretty crap, but at this point it’s a fine and dangerous line between “undermedicated” and actually just “over-medicated”...at this point. See, I’m on 100mcg T4+ 50mcg of T3, if my math serves me right that is like equal to ~300mcg, and that’s WAY too much...I need to be decreasing them... It’s just too much and might be causing additional fatigue?? What’s bothering me is that symptoms haven’t improved much over a month of this dose...I mean slightly yes, dramatically not really!! But you are saying it’s just the T3 causing the symptoms...kind of a paradox?? could it be that I’m just taking longer to notice improvements/results?? Idk, the T3 had started working within days, but in the reality, I must be now heavily over-medicating, and that’s causing the ADDITIONAL fatigue?? Do you know what I mean? How can I be under-medicating if I’m reality I’ve started over-medicating? Only explanation is either that it’s something else causing the symptoms....or, it’s just gonna take a bit longer to see the full results... (in the mean time it might be a good idea to lower the dose a bit below ~300) know what I mean??

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Are you still taking iodine? How much? If not, how long were you on it and at what dose, and when did you stop?

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That's great that you don't have positive antibodies. To confuse the situation even more, there are a few people who have Hashi's but don't test positive for antibodies. :-/

I think you said it's been 4 weeks since you last ran your labs? Before you do anything, you need to test TSH, FT3 and FT4 to see where you currently are. You will need this information in order to determine how much, if any, you should decrease your medication and which type, if either, you should decrease. Considering your situation, testing at 4 weeks instead of the standard 6 weeks is a good idea.

That math does not exactly pan out, especially if you're not converting. First need to see what your FT3 and FT4 are.

Without current labs, there is no way to know what your levels are and if they are the cause to your symptoms. They may or may not be. Your symptoms sound more like either hypo symptoms or one of your levels is too high and the other is too low. It's possible that you could be over medicated on either T3 or T4, but not the other. I could be wrong, of course. Do you have any over medicated or hyper symptoms? Heart palpations or pain, heart racing, feeling hot, sweating a lot, feeling shaky, anxiety, blood vessels on your arms or other muscles are dilated, muscles might feel warm, diarrhea, losing weight, food is going through you quickly, or feeling buzzed?

I would be really surprised if something else besides your thyroid is causing your symptoms based on your previous lab results and then your medication dosage. If you are hypo at your current medication level, then something is blocking your absorption of medication.

Before lowering your meds, you really do need lab results. Otherwise you'll just be on another blind roller coaster ride. After you get your results, then you'll know what needs adjusting and if your thyroid is the cause of these symptoms. Don't test you levels, and you'll be even less informed.

I'm not sure if you answered this yet, or I might have missed it but:

1) How do you take your medication?

2) Are you still taking that iodine? (sorry if I've already asked this a few times). Figured it would be good to contain this in the same reply.

:-)

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Andy, they can't both be <10, surely? If both antibodies were tested, you would have two results. They are two entirely different ranges, so would be very strange if they both gave the same result. Besides, you cannot rule out Hashi's on the basis of one negative results, because antibodies fluctuate all the time. And, to make things more complicated, not all Hashi's people have high antibodies. So, I always think that, unless we know the actual cause of our hypo, we should just assume that we have it, and act accordingly. Can't do any harm. You say you 'hardly' eat any gluten, but just a small amount can be harmful if you are sensitive to it. So, try cutting all of it out - 100% - and see if it makes any difference.

at this point it’s a fine and dangerous line between “undermedicated” and actually just “over-medicated”..

No, it isn't. Well, it wouldn't be if you'd followed the rules of starting low and increasing slowly! If you do that, it's not a fine line at all, and people manage it perfectly well. But, even so, over-medicating - and it won't be by that much! - isn't dangerous if you have tests at the recommended times - i.e. six weeks. But, you've gone at this like a blind bull in a china shop, and got yourself in a terrible muddle!

You know what? If I were you, I'd stop the lot and start again. And do it properly! Don't worry, you won't feel worse if you stop and let the excess hormone out of your body. You might even feel better. Just stop for a week and then restart on 50 mcg levo only, and retest in six weeks. Increase by 25 mcg every six weeks until your TSH is one or under, and it becomes clear how well you convert. Then - and only then! - think about adding in T3. I can't see how else you're going to get yourself out of this huge hole you've dug. :)

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Hi greygoose, we meet again. Umh, yeah, idk...I never ended up getting better. I just got worse...much worse. I just don’t want it to be CFS :/ I’m starting to think this is ME, and I would be so devastated if it was. :( I just don’t want it to be ME!! But like the lingering fatigue is just too much... The only thing to save me is this Gluten intolerance...Cause my ferritin is fine so it’s not Iron Anemia... If that’s not that,I’m lost... a person below posted about ME, and she described 100% my symptoms... concentration, memory, unrefreshing sleeps...:( Why this hit me and I don’t deserve it :( I’m so sad this has happened to me. It’s just a bit much for me... :( I wished it was thyroid but I’m afraid it’s not, at least not in its own. Idk, I need to get retested like it was suggested to me... I’ve been on T3 for a month now, surely it would’ve kicked in more than it has, but it hasn’t. It’s helped the “thyroid” aspect, but just this fatigue keeps getting worse...and worse...:( I could barely stay up through the day today. & I know I increased the dose a bit fast... but idk, i just had to because of symptoms, u said u were on 75 so I thought it’d be fine or something. I was very ill and I was just sick and I did it and I probably shouldn’t have but just wanted to get better. Also on steroid forums people go from like 25 to 50 in one day, and then to even 75 no problem. And the starting dose of Levo can be 100mcg, it even says so on their website.. anyways, back to whats important: yeah, weird isn’t it that they were both exactly <10, the same number... idk what that means, but that’s the number. but thing is I also had a thyroid ultrasound and it came back fine. So more proof that it’s not Hashi? that’s just all really unfortunate...I’m running out of tests.It’s not Iron Anemia because hemoglobin and Ferritin were fine. So, idk anymore. Thyroid meds are failing to erase the fatigue...i just don’t want it to be ME, please God!!! Thank you for the advice on gluten, very good stuff, thanks a ton for that...About completely starting from scratch, idk about that. I can lower a bit over time...don’t wanna go back to how I was feeling before I started thyroid, that was even worse, and my GP would freak if I stop the meds on my own...you know? I mean it could also be some side effects from over medication, but honestly that’s subjective...some sides yeah, but in general it should’ve been improvements. But I highly doubt it. I just keep getting worse and worse and worse... Thanks for your help though. Just, idk, pray for me. :(

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Andy, are you actually taking in anything that is said to you? What you really, really don't want is a diagnosis of ME/CFS because there's no proof that it actually even exists! And certainly no proof that you have it. On the other hand, there's vast proof that you have a thyroid problem, but - seemingly - you are not understanding exactly how awful that can be!

Why don't you want a diagnosis of ME/CFS? Because it's a dustbin 'diagnosis'. Lazy doctors, that can't be bothered to get to the bottom of your symptoms, give you that 'diagnosis' to get rid of you, and to consign you to the dustbin so that they never have to bother about you ever again. Whatever is wrong with you in the future, they will just say 'oh it's your ME/CFS' and send you away. Or, what would be even worse, they would send you to a CFS clinic, where they will force graduated exercise on you, and try to endoctrinate you to believe that it's all in your head, and you are sick because you want to be. Go down that road at your peril!

I’ve been on T3 for a month now, surely it would’ve kicked in more than it has

No only has it kicked in, but it's also kicked you in the head and loosened your brains! How many people have to tell you that you started T3 to soon and too high and increased too fast, and at the same time increased your levo, and those are the worst things you can possibly do, before you take some notice and believe them??? You have well and truly shot yourself in the foot and now you are paying the price - and it's a high price to pay! So, will you now please do the sensible thing and stop everything for a week and start again CORRECTLY?

Yes, I'm taking 75 mcg T3, but I didn't say you should be! And it took me a long time to work up to that dose. I didn't do it in a month!!!

Yes, a starting dose of levo can be 100 mcg, but it doesn't say you can start on 100 and add in 25 mcg T3 at the same time!

Thyroid meds are failing to erase the fatigue

Obviously they are - because you're mistreating them! You have got to understand that thyroid hormone is not aspirin! And you cannot treat it as such. You have to obey the rules or you get yourself in deep doo-doo, like the doo-doo you are in at the moment!

About completely starting from scratch, idk about that. I can lower a bit over time...don’t wanna go back to how I was feeling before I started thyroid

Yes, you could go back to 50 mcg levo only. But you would have to wait a lot longer than six weeks to sort this mess out and get valid labs. I would say about 3 months.

my GP would freak if I stop the meds on my own

Isn't your GP going to freak out when he learns what you've been up to with T3 and increasing your levo on your own? I know I would if I were your GP! In fact, I'm doing a pretty good imitation of it now, and I'm not anybody's GP! And he's going to find out next time he does labs. If you think all that messing about is going to go unnoticed, you've got a huge shock coming!

I mean it could also be some side effects from over medication, but honestly that’s subjective...

What on earth do you mean by that? Subjective? How can side-effects be subjective? And of course there are side-effects from being over-medicated, you're suffering from them now! Plus the side-effects from increasing too fast. No wonder you don't feel well. How subjective is that?

but in general it should’ve been improvements

No it shouldn't!!!! Not when you increase that fast! To go from zero to 100 mcg levo and 50 mcg T3 in one month, you'd have to be suicidal!

But I highly doubt it. I just keep getting worse and worse and worse.

Normal, under the circumstances.

pray for me.

I don't pray, I give practical advise. You follow it or not, as you wish. I want you to get better, obviously, but I know you're not going to unless you start taking notice of what people are telling you. What is the point of coming on here asking for advice if you totally ignore it? You totally ignored what I advised you in your last post, and now look at the state you're in!

Take care.

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YES. Your results show that you are very under medicated. This is why you have all your hypo symptoms. Now you just need to know if you really do have Hashi's or not. This is the most logical cause.

How do you take your thyroid medication?

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Hi andy97. Can you tell us the details of how you are taking your thyroid hormones? Time of day, with food or drink, when you eat afterwards, etc.

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Hi Andy

So sorry to hear how your feeling. This happened to me last year, it's debilitating I was diagnosed with M.E! So now I'm living with An Underactive Thyroid and M?E. I don't want to worry you but maybe think outside the box of Thyroid. Go back to your GP,

Good Luck keep in touch

Kaz 🙋🏻🐶

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Please... do share your experience, either on here or via PM...at this point I’m heavily thinking I have ME, as well...How did you get your Diagnosis, how long were you struggling for, before the final diagnosis?What alternatives had you tried?? How did you snap out of it?? If you ever did? Do you know what causes ME to begin with?? I strongly suspect having this... I just need a few more pointers...I’ve been thinking outside the box of Thyroid for a while now, but I’m running out of cards, I just wish you shared a bit more about your story!! & Thanks so much for replying!! 😪🤕😁

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Hi Andy

Well first of all can I just say that you. Can't just 'Snap out' of ME sadly I have to just learn to go with each day. I had a very good GP and colleagues had already said we think you have M.E. I have to say I really didn't no about the illness. For me as well as the tiredness my memory and concentration are completely shot. Pace,Pace,Pace Andy. That's what M.E is all about. I've gone back to work now I was on a walking stick until last September! So I feel I have come along way. I had a cold and breast cancer scare I never really picked up after the cold I just felt worse & worse.

Find what works for you! I go to Aqua Aerobics I can't always finish the class but I go. I have a Sauna &Steam because it helps with the pain in my body that I have. M.E Association are great too. I take each day as it comes if you need to sleep then sleep, if you feel ok then go with that. One of the problems with M.E is that it doesn't matter how much you sleep you ever wake up. Refreshed.

I hope this has helped you a little bit more. I have headaches daily too.

Keep in touch

Kaz

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What is PM??🤔

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Private Message !

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Hi Marz

Thanks for that I don't no how to PM

Karolly 🙋🏻😊

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Click onto the Username - and once on the new page look out for MESSAGE - Click and then you can type a Private Message :-)

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I do agree with the posts you need to change thyroid medications slowly. This was certainly my experience. I was on Synthroid for many years. Following Endocrinologist advice I switched to Tirosint (a newer Levo in capsule form) to see if it would absorb better. I took the exact same dose of Tirosint that I had been taking of Synthroid, & I have never been so tired in my life after that. I read up on Tirosint posts & found a recommendation to start it at a lower dose than your previous thyroid medication dose.

Tirosint was apparently absorbing so well I was losing a lot of weigh to the point this was a likely factor in my marked fatigue. I took it upon myself & returned to taking (only) Synthroid to stabilize my weight & alleviate fatigue.

Under Endocrinologist direction I’ve ended up taking both these medications but on different days now. My fatigue & weight loss are resolved.

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I have under active thyroid since I’m been 25 and I never had all those symptoms but since 2010 I have all your symptoms now plus pains in my joints and pressure points I have been diagnosed with fribromalgia mane it’s something you can look into

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Some people think Fibromyalgia is undiagnosed Hypothyroidism ?

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I swear this could’ve been written by me, lots of similarities besides our name! I wish you the best of luck. My antibodies both TPOab and TGab have also been in range, highest TSH was 5.30 years ago though only 2.50 most recently. Had an ultrasound done a bit ago and awaiting results.

You mentioned the debilitating fatigue. One thing I noticed, I could easily sleep 12-14 hours, even 16 hours sometimes. Ever since going on Synthroid this has been impossible, though I still have a way to go to bring up the Free T4/T3.

One advise I’d give to repeat what others said, be patient. Don’t jump to NDT right away because you may not need it. Slow and steady is the key here, to retest every 4-6 weeks. Best of luck to you to figuring out what’s going on.

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Hi Andy,

Just a thought; when are you taking your medication? Do you take with your breakfast? If so stop! I had thyroid cancer 3 years ago and after the thyroiectomy was started on levothyroxine. For three months I felt absolutely dreadful; fatigued, cold to the bone and enervated. After my first consult with the oncologist she suggested that taking the dose at least an hour before eating would increase the absorption and improve my symptoms. It took another 3 months with slightly increased doses, but I was then able to return to work and felt great! Started on 150mcg, went up to 225mcg over the first year but after some palpitations reduced the dose slowly back down to 175mcg and I feel great! So if no one has told you before try taking it at least an hour before your first meal. Results may not be speedy and you may need further assays although looking at your results probably not. You may start to feel the benefits in a couple of weeks!

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Andy

Absolutely could, been there myself. You need to get other things checked if you are male with hypothyroid.

Happy to PM on this

Paul

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Hello - I had this issue too. When I first when on the meds I was great but when work got stressful I got worse and worse and ended up essentially being bedridden with most of the symptoms you are talking about so I really feel for you because I know how terrible it is! I ended up removing gluten from my diet which was pretty life changing and had a huge impact. I still needed 10+ hours sleep and if I got stressed many of the symptoms would show again (but never as severe again). Since last year I moved onto the Autoimmune Protocol diet adapted for Hashimoto's and I am back to feeling like I did before I got ill - I feel amazing, full of energy, can cope with less sleep. I feel like I have my life back! I hope you feel better and find something that works for you.

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Yeah that’s exactly how I feel... you described it perfectly :( Damn, so many in the same position ... at least 5 people are feeling the same? anytime I work I feel worse afterward...what the hell! thank you for understanding, but I’m starting to be so fed up of this, honestly. I already went gluten free, might have to try that other one too...I just don’t know anymore :/

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I find these posts on fatigue interesting. I haven't had a thyroid gland for 53 years (Im 64 now) and never had fatigue, in fact had a very good active life, until around 9 years ago when a zombie like fatigue feeling, along with other horrible symptoms all started, like sudden weakness of the legs and yes muscle and general weakness, tingling, skin changes, you name it. Because Id been well on my T4 thyroxine all those years I researched into other possible reasons as to why the change, so I asked for a cortisol blood test and lo and behold it was not normal. Vit D was also low but I didnt feel any better supplementing. (Interesting, as I picked up info that the hormone Vit D is dealt with via the thyroid gland) A 'borderline' ACTH deficiency diagnosis was mentioned in 2016. Query on Addisons too but ruled out. Another diagnosis of ME more recently, but I feel more to it than that. So am still not well with allsorts of symptoms, old ones and new ones daily. Tried increasing levothyroxine to 112mcg daily with no change to how I feel. So been going to see an endo all this time but still with no real definitive diagnosis and Id like to get to the real root of the problem before I waltz into the sunset with any extra meds ( eg hydrocortisone). Ive wondered about this T3 thing too because its the energy bit, and whether I convert properly.(They say think I do) It is a very complex business for us all. Its like somebody turned my switch off and everything downgraded.

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I personally do not have any thyroid issues, but I do have something called Chronic Fatigue Syndrome. I feel like you should look at it as a possibility. My love is with you.

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Thank you so much. :( My question is: can CFS/ME have stages? Because from what I’ve been reading, it does sound FAR from how I feel...it sounds very very extreme...I am chronically tired/exshausted/Fatigued, and very demotivated yes, but I can still get up and do stuff sometimes...I guess. Like I can take public transportation, but I do have difficulty talking (it’s tiring), writing, doing stuff, taking my Dog out for a walk, everything is exausting... so can there be such a thing as MILD CFS/me? Because from my reading, it just sounded very very severe and extreme... I wonder if my symptoms are how it “starts” and then it’s gonna get worse? I’d hate it to be that though, I really would. Because there is no cure, and stuff. I’d love if it was just Iron Anemia or something, you know. How bad is it for you? If you don’t mind sharing. Do you still have some function left??

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There are different severities is how I would word it. Some people are bed bound, some house bound, and others are like me can at least work a little or go to school but nothing else. Personally, for me it started out as what everyone believed to be strep throat. I had a sore throat, sore lymph nodes, fever, was exhausted, and mostly slept. When I first got it, it was awful. I was able to go to classes, and luckily I lived in a dorm on campus. But it was rough. I did not study or shower really or eat much. Luckily, I guess? it has gotten better for me. But I still struggle. A lot of us with this illness manage and find a balance. We pace. That means we generally find out what we can and can’t do. We try to stay within that balance before we “crash” and are in bed for a few days, weeks, or months. Crashes work differently for everyone as well. I can function. But I don’t do much. I go to university currently. I don’t have much of a social life at all. I also commute to university though about 45 minutes away from where I live. So I can also do more than most. But when I get home, I tend to rest. Go to bed at 9. Lol. I’m not saying you have it or don’t have it, but it sounds likely. There are all sorts of severities of this illness which is partly what makes it so difficult. Another note: When they thought I had strep, it turned out to be mono. So most people get it from having an infection of some sort, not resting enough so in turn not getting better, and then getting it. Not always the case and no one is for sure, but that is a pattern. They found the Epstein-Barr virus in my blood after the fact (the one that causes mono) and it has been proven to cause CFS/ME. Best of luck to you!

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It sounds like ME/CFS, or possibly Addisons Disease. I have both and I know the kind of exhaustion you're talking about. There is nothing to take for ME that works, but you should get your GP to take an early morning cortisol test - as near to 8am as you can get. Tell him you want your Adrenal Function tested. If it is Addisons or Adrenal Insufficiency then you're risking death by being untreated.

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Yeah, it’s this full body feeling of exaustion and weakness and fatigue...it’s the worst feeling in the world. :( just feels like my energy is being stolen. :( It’s like a never ending lingering Fatigue... and it never ends no matter what I do... Today I feel even worse. It feels like some chronic disease... My question is: What causes CFS/ME?? I didn’t have any viral infections, what could’ve caused it?? It all kinda just randomly started for no apparent reason. (only thing that it could’ve been was Amphetamine use. I used some Vyvance and Adderall, maybe that had something to do with it?) & I have partially tested for Addison’s already. my Cortisol is always chronically low, but the ACTH came back fine, not elevated, ruling out Primary Addison’s, so my Endo won’t do the ATCH stimulation mainly because the Cortisol is not “low enough”. It came back below range once but I wasn’t instructed to do anything, and now it’s in range but still low... it’s not the Cortisol causing this though, because when I take HC I feel a bit better but still very much so Fatigued...so idk how much my chronic low cortisol has to do with this... My Cortisol apparently just wasn’t “low enough” for Addison’s...so he wouldn’t order the atch stimulation.

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Yes always taking on empty stomach and then nothing apart from water for at least an hour after is the recommended way to take Levo and T3

No vitamins or supplements within 2 hours, some like vitamin D, magnesium and iron four hours away

Many take on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

But main issue is possibly that has increase dose far too fast and by far, far too much and is now over medicated. But until tested after 6 -8 weeks on CONSTANT dose, will have no idea.

Reducing dose, it takes even longer to stabilise, more like 10-12 weeks after each dose reduction

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I am going to give you three chapters that one of our Adviser's wrote before his accidental death. I think these will be good for you as it can help you slowly recover your health. He himself would never prescribe levo only NDT or T3. Many do fine, mind you, on a combination. It just takes time to slowly raise dose until symptoms are relieved. That is the aim "freedom from symptoms". Also as mentioned elsewhere vitamins/minerals have to be optimal too. Deficiencies in some can also cause symptoms.

Copy and paste the tinyurls to be able to read the advice.

This doctor also only took a blood test for diagnosis and thereafter it was all about how one felt on particular doses. Links below:

Chapter 2

tinyurl.com/ya5blrr2

Chapter 3

tinyurl.com/y7ejh9sh

Chapter 7

tinyurl.com/ycxpz565

Tick off your clinical symptoms if you haven't done so before:-

You can tick the first one off straight away.

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The other thing that can be related to extreme fatigue is insufficient output of adrenal cortisol. And it is fairly common that hypothyroid results in stressed adrenals ("adrenal fatigue"). If you find that you are still having fatigue when FT3 and FT4 are well in-range, or if you find you cannot get FT3 and/or FT4 in-range because thyroid treatment is causing negative symptoms like anxiety, then it would be a good idea to have your cortisol level and rhythm checked (which most MDs will NOT do!). It was documented about 50 years ago that some patients benefit from low-dose hydrocortisone (the pharma version of cortisol) at a dose less than 20mg per day. This is typically given in a descending dose: larger in the am, smaller at noon, then small dose in the pm, to simulate what adrenals normally do.

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Thank you so much for this, happen to know is prednisone is ok too, because that’s what I’ve been using

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MDs use prednisone routinely. That's what an MD gave a friend here in town to help him get out of a CFS syndrome. Depends on whether you believe that using a bioidentical hormone is safer or not; hydrocortisone is bioidentical, prednisone is a synthetic version which the body does not make. What size dose are you on?

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All I can say to you is I feel the same, exactly.....achy joints, no motivation AT ALL. I have so many reasons to jump out of bed, but can't press go. This site has helped so much, it's your dr., and blood testing=correct medication until then you struggle. Horrible daily existence, at least you've found the correct site that understands you. Keep reading, with hope💟

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Yeah, I can 100% relate to what you’ve said. I’ve recently started getting the body aches as well...were you able to find out what was wrong with you? Was it thyroid related? Wasn’t possibly ME was it? Cause I’m strongly suspecting that’s what it was for me... sadly

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Strange, this thryoid has been or given me positive feedback👏 this site, best! I felt like a walking death sentence, until I was told (this site) to change up on taking supplements/stop completely, start a gluten free diet, find a digestive/probiotics (really, really helped) get educated on leaky gut, correct foods to eat/not. It isn't easy, but heck, the effects of feeling awful you'll try anything, right? Try to be who you once were, and able to do is frustrating, until you begin feeling better. No one understands, this site did, gave me hope is all I know for sure. Maybe you will too? Hope😎

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So many of us feel the same way about the community on here. How life would’ve been if I found this place 5 years ago who knows. For many of us it’s also hard to follow the posts and advise on here because of brain fog, so we might dip in and out. For example I came here 2 years ago.

But once you really spend the time to take in the advice, go through the scientific findings members post and begin to understand it all, you know that the light is not too far away from this dark tunnel anymore!

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Was this on an alternate account, if I may ask? I can’t find the post(s) on your page. or you just learned from other’s experiences... thanks for the advice as well! Anyway, I am doing most of the things you described but still feel like crap. (Gluten free+ digestive and probiotics, etc). But hey, thanks, again...I just completely hate CFS

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The hydrocortisone......where and how can i find it? I'm sure my adrenal need help. Stressful, life stuff left it's mark on me in many ways. Fight or flight w adrenal, how do u buy it?

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It’s not very easy to find, but a website I had luck with was inhousepharmacy.vu (no prescription needed) Good luck.

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Hi andy, yes I had a prior account: gardeniasmell which was my original, opened about, 3weeks ago. However, last weekend I couldn't get onto the website, so I opened, beachytoes2u. I've been in contact w administration to close or combine both accounts. I checked back on my posts, maybe check back, researching a specific word? Good luck, otherwise, research my site, you're on there, also? Does this help?

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