Sudden and vicious fatigue : Hi Anyone have... - Thyroid UK

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Sudden and vicious fatigue

Batty1
Batty1
105 Replies

Hi

Anyone have sudden fatigue that's so vicious that every inch of your body including breathing is exhausted? I have no thyroid so im pretty familiar with hypothyroidism and fatigue but my gosh this is absolutley severe form of fatigue I've ever felt. I drank some electrolytes and took some more B12 complex in the hopes it will soon pass..oh Ive been having shoulder fatigue for about a week prior to this episode.

I'm scheduled to have blood test on Monday (tsh,ft3,ft4,t3) and cholesterol panel because 8 weeks ago my cholesterol went sky high.

I just need to know if this is common or should I be concerned.

105 Replies
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Margo

Sounds like my story too @Batty1. (I don't have a thyroid either)

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Batty1
Batty1
in reply to Margo

Hi Margo

I'm sitting here reading a lot of very old fatigue post that's how concerned I am, this isn't right. What dose is your medication? How long have you been having this type of fatigue..

1 like
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Margo
Margo
in reply to Batty1

It isn't constant, but when it hapoens it is grim. I have a few days when I am feeling low, hollowed out dark eyes and then the crippling fatigue hits. I take 2 grains NDT daily.

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Batty1
Batty1
in reply to Margo

Yes, my eyes are looking a little bruised from under eye bags. I was on 2grains of Armour Thyroid but switched 8 weeks ago to 88mcg synthyroid and 10mg cytomel and was actually feeling good and until now.

I get fatigue but this type of fatigue goes beyond normal. I could not sit up its as if my body went limp. I'm calling Endo on Monday I'm not living like this bad enough I was forced to live with Chronic Pain...not this, not me.

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Margo
Margo
in reply to Batty1

Yes it's strange how you can be ok for a while and then wallop, there is no rhyme or reason. All my blood results are good, I don't understand it. It gets me down as I never know when it is going to hit.

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Batty1
Batty1
in reply to Margo

The worse part of this disease for me is people who have no thyroid disease and think my tiredness or chronic pains are because I sit around too much...I'm sure it doesn't help.

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Margo
Margo
in reply to Batty1

I am pretty sure my friends think I am a hypochondriac, they have no understanding.

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Batty1
Batty1
in reply to Margo

I don't even talk about my issues anymore.

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RufusRuffcut123

Nobody understands how you feel unless they get it. My friends and some family put everything down to diet. So did my doctor years ago until they agreed (finally) to do a thyroid test and lo and behold: function practically zilch. I’m thinking of flying somewhere to get properly screened. All they care about is TSH results here ;( . Hope you feel better

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Lalatoot

Yes and it feels so awful. My Ft3 was low when I had those symptoms. Glad you are getting bloods done. All the best.

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Batty1
Batty1
in reply to Lalatoot

I can't wait to see my lab numbers ...I will give prediction about them and post the actual results about 5 days after the blood drawl.

I predict my results will say I'm hyper with non-existent Ft4 levels, FT3 barely scraping middle range and T3 not even a 1/4 into range and the golden boy TSH being below range.

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FancyPants54
FancyPants54
in reply to Batty1

Well you certainly won’t be hyper if your results are anything like your prediction!

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Batty1
Batty1
in reply to FancyPants54

Results coming soon. I bet my TSH is still low inspite of decrease...how I feel has no meaning to my Endo. Lol

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FancyPants54
FancyPants54
in reply to Batty1

Then you have to try and find a different one. One who understands that T3 is the driving force for our bodies.

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Teresamarie

Hi Batty1

Sorry to hear you’ve hit such a low. I still have my thyroid but my pituitary doesn’t work so not sure about how one feels vs the other. I just know I’ve been sweating all day (dripping off my hair!). I talked to my endo and will now go 75 mcg Synthroid one day and 88 mcg the next. It’s the pits!!!!

I’m going to try the B12 and electrolytes. Can’t hurt 😞! Good luck to you!

Xxx Teresamarie

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Batty1
Batty1
in reply to Teresamarie

Hi Teresamarie

I think the electrolytes and B12 complex help a bit my breathing has improved.

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Teresamarie
Teresamarie
in reply to Batty1

I too have breathing problems. My sister reminded me about my mom’s use of the flowering plant Lantana. If you crush a leaf 🍃 in your hand and smell it breaks up congestion. So I got one today and put it by my chair!

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Sally56

Hi Batty,

Fatigue and I are well acquainted! I have no thyroid either. I am in the midst of extreme fatigue, causing me to lie down a lot. I always second guess my results but this time I was wrong. TSH 20! We think that the Thyroxine (I'm at the end of the packet of 200) has lost it's efficacy). I take slow release T3 and can only get to 5mcgs a day. I have adrenal issues (I have a disorder called Primary Aldosteronism Hyperplasia which gives me high and low cortisol and very high aldosterone. High AND low cortisol gives me fatigue and hypothyroidism gives me breathlessness. Probably not helping you Batty but do you have adrenal probs, they often go hand in hand? Another thing of course is that Synthroid has fillers. I know I react to the lactose in some of them. It sucks.

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Batty1
Batty1
in reply to Sally56

Hi Sally56, I have no idea if I have adrenal problems my Endo keep telling me I'm fine or I'm hyper....I don't feel fine or hyper.

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birkie

Hi Batty1

I have no thiyroid mine was removed in May this year.. I also have ME/chronic fatigue which I've had since 2006 I have learned to know my triggers ect with this illness.. But my thiyroid problems I'm just trying to deal with I'm on 75mg of levo I was hyper, (overactive) this last 3 weeks all I want to do is sleep my fatigue is like nothing I've ever felt I couldn't even make myself anything to eat I just drank to keep my fluids up I do get up but I'm so exhausted no relief from sleep yesterday I fell asleep at about 8.25pm I woke up at 5.20 this morning I take my levo at 6...i could just fall back to sleep now and sleep for hours that's what I've been like.. Im having my bloods taken on Monday to see how the levo is working.. I'm not too good with synthoid meds theirs many I can't take so I'll be interested to see my blood results.. Hope you get your fatigue sorted I'm informing my gp about it.. 👍👍

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Batty1
Batty1
in reply to birkie

Hi birkie, being thyroidless sucks and this type of fatigue is alarming it's not normal for someone's body to turn into jelly that's what I felt like I couldn't even answer my telephone it was right next to me.

I'm feeling a little better today but I felt good yesterday until the fatigue hit. Only thing different I did yesterday was add a larger base to my cane (I have chronic pain from Psoriatic Arthritis) and it's a bit on the heavy side I can't imagine that being the issue, maybe?.

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birkie
birkie
in reply to Batty1

Hi

I have both ostioathuritis and rheumatoid arthritis I've had these from 2006 so I know how to deal with the pain ect...but it's not normal for the kind of fatique were felling even at my worst I never slept as long as I have this last 3 weeks I feel like I'm drugged 😢😢😢

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Raffi3

Cholesterol will increase if underactive.

Are your bowles clearing as constipation can make me feel very lethargic if not working properley and being low on T3 will cause the digestive system to not work well. T3 carries protein around the body. If not breaking down proteins properly this can cause a problem whit serotine and dopamine levels. It affects so much I find.

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Batty1
Batty1
in reply to Raffi3

Oh Raffi3, this is very interesting I have IBS-C (my whole life) and Ive been having it act up for the past few months but it's chilled out recently and my Cholesterol levels are high especially my LDL.

Like I said earlier this fatigue is like nothing I've ever experienced in the 3 yrs without a thyroid. I'm currently tired but not like yesterday.

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shaldonkoolma

Hi Batty

I have no thyroid either and think I have been quite hypo for a while. My bloods looked ok to my GP but my FT3 was the low end of normal.

Since April or so I have had a chronic fatigue type thing, where I have no energy to do anything and only function about 30%.

Its makes me feel much older than I am, and I can do very little exercise or concentration (I thought it may have been from the stroke I had last year from a clot, which may have also actually been related to being hypo)

Interesting that quite a few of us who answered this thread have no thyroid! Perhaps t1 and t2 actually do something as well as t3 conversion issues.

Im going to see an endo in a couple of weeks, going to try ndt hopefully!

Good luck!

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McPammy

I get sudden fatigue. My body goes very heavy almost like I’m in quicksand.

I always have a spare blood form from my GP. In the past when this sudden fatigue happens I’ve got my partner to take me to get my bloods done. Every time this sudden fatigue/weakness comes on, which can last hours, my T3 or T4 has been over the range. So I now know that when it happens I’ve slightly gone over and reduce my medication slightly too. It’s generally my T3 now since starting T3 medication this year that’s over. And as it only spikes for about 8 hrs I can feel my strength coming back after 8hrs is up. I’ve also had the same sudden fatigue with over medication of T4 in the past. And I’ve also had very low cortisol on T4 only. But since starting T3 medication, as I am a very poor converter of T4 to T3, my cortisol has bounced back remarkably.

I generally do not take medication prior to a blood test. We are advised to do this as medication can give you a spike in your results. I’ve done bloods with and without taking medication to see the effect. The TSH stays the same for me but the T4 and T3 will rise and go over. So if you are near the top of the range without taking your medication, you probably will spike over the range when taking it.

What I do not understand is why the sudden slamming of the brakes leading to severe fatigue. My only thought is it RT3 braking too suddenly to remove excess T3 or T4 medication.

I’m going to speak with my private Endocrinologist soon and ask him as understanding for me is everything. Then I can do something about it.

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Batty1
Batty1
in reply to McPammy

Hi McPammy

My bloods are pretty much the same on any prescription that Ive taken from the (combo) t4/t3 just T4 and Armour and still my FT3 is low,FT4 very low and my T3 is low and my TSH super low and all they say is I'm hyper...I asked him to explain being hyper on every combo of thyroid med from low dose to higher dose with and without T3 something is wrong...they don't believe me. I only allowed this slight reduction/change because I was having the shakes in my hands and just felt yucky and Ive been doing good until the massive fatigue hit.

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McPammy
McPammy
in reply to Batty1

Can you go private to get help. I went private after NHS couldn’t or wouldn’t help me. That’s when I found out I’m a poor converter and I got the T3. Also my adrenals were suffering. Have you had your cortisol checked as well.

You certainly seem under medicated. When I was severely under medicated last year with T3 no one would believe or help me. I was collapsing constantly for over a year. I became housebound and even had to use a wheel chair. It wasn’t until I went private that I was saved.

Have you considered going private.

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Batty1
Batty1
in reply to McPammy

I did go to outside Endo that came highly recommended and what and epic failure this person was at that time she had no idea about Armour Thyroid dosing and kept googling it...that adventure cost me $400.00 for 30 minute google search🤣

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Harric8

I am going through this at the moment,don't know if it's my hypothyroidism or my illeostmy, so debilitating. Awaiting blood results.

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Shellian

Hi Batty,

I have no thyroid either. Although some days I do seem to have alot of energy and manage to get lots done, some days I just crash too and feel exhausted it is difficult to do anything at all. On these days I feel very out of sorts and don't know what do with myself. These days just seem to come out of the blue with no apparent reason. My concentration is not brilliant anytime anymore but on the days I feel fatigued it is difficult to stick to anything or do anything at all. Usually I need to sleep before I function properly again. However, I still don't sleep very well.

I also suspect there are other hormones our body needs with having no thyroid. I take 100mg thyroxine, D3 in the form of one alpha , as I have no parathyroids either and recently, as my hairdresser noticed I have alopecia, prescribed iron supplements to try and improve levels. I suspect that I do have a T3 conversion problem but as I had adrenal issues last year, I am trying to get all vitamins up to good levels before sourcing it. I am also trying to eat very healthily and get enough exercise.

I never realised the long terms effect of having your thyroid removed has, both physically and psycologically. Maybe someone on the site can shed more light on it.

Good luck Batty.

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McPammy
McPammy
in reply to Shellian

I found introducing T3 medication really helped my adrenals along side my thyroid levels. I am a poor converter and had a positive DIO2 gene test recently. Have you had the gene test.

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Shellian
Shellian
in reply to McPammy

Hi McPammy,

I haven't had the gene test. I have MEN2a and had my thyroid removed and bi-lateral neck dissection 11 years ago as I already had the medullary cancer.

Could I still have the D102 problem? Did your doctor/ endocrinologist do the test? How long did the T3 take to make a difference?

I am considering sourcing T3 as without me asking for it the endocrinologist said he would give me a prescription but that I'd have to source it myself from abroad.

As I had had so much stress over the last four years I had very low cortisol and some vitamins and minerals. Adrenal fatigue. From this site, and from reading the James Wilson Adrenal Fatigue book I have realised all these need to be optimum before any thyroid medication works properly?

I am also worried about getting g hold of the T3 & start it only to find out that if Brexit happens, I won't be able to get it anymore??

I am really grateful that I got rid of the cancer but did not realise the problems of living without a thyroid. My symptoms have just gradually appeared over time.

Thank you for replying.

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Batty1
Batty1
in reply to Shellian

Why would Brexit prevent you from sourcing meds from abroad? I'm in the US and just curious.

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McPammy
McPammy
in reply to Batty1

No one knows what is going to actually happen and how goods from outside of the UK will be sourced and what taxes will be put on things. Or even if you can purchase things like private medication. It’s just all a bit concerning.

We need to stay in the EU and not be exiting. To exit will be disastrous for the UK. People who voted back in 2016 didn’t really know then how disastrous and what they were voting for as they were spun a load of lies by the now British prime minister. And it was all about the Tory government being spilt within itself that brought the stupid referendum about in the first place. People who voted leave were mainly fed up of austerity caused initially by the American banks loaning money to people who couldn’t repay it. Then the collapse of the global economy in 2008 with the likes of Lehman Bros bank collapsing etc etc.

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Batty1
Batty1
in reply to McPammy

Wow.

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Shellian
Shellian
in reply to Batty1

Hi Batty, I'mnit sure that would but there is alot on the news about how there might be and I stress might be, as don't want to panic anybody, medicine shortages of drugs from abroad, probably more from the EU countries. I thi k this would be due to more border/ custom checks. I don't completely understand it. Brexit is do complicated and the politicians don't seem to know it tell the truth either. We will wait and see. As far as I know levo is made here so we should be fine with that at least!

Thank you for your reply and thank you for posting. You have had some really interesting and informative replies.

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McPammy
McPammy
in reply to Shellian

Hi Shellian,

I’m very sorry to hear your story. You’ve had it tough.

To be honest I don’t fully understand your condition. My sister had thyroid cancer a few years ago and had it removed also. So I do know a bit about that. I know you must keep your TSH suppressed to stop any cancer returning.

I have had Hashimotos for 12 years. Was in Levothyroxine only for 11 years. For 11 years I was still hypo as no one ever tested my T3. And I knew nothing about T3 until last year.

If you want to do the DIO2 gene test it’s done privately through Regenerus Laboratories. You can chose to have the results sent direct to your Dr or chose to have them sent direct to you. Direct to you is a little more expensive as you have to pay £65 for a professional to interpret the result. So it can cost either £85 for test to your Dr or £85 plus £65 for result direct to you via an interpreter. I chose the latter as I wanted to make sure I had the gene fault before letting my Drs know. Mine was positive and my GP very happy I had the test done to confirm what he’d been fighting for against my NHS Endocrinologist. My private Endo was also happy is diagnosis is confirmed.

The T3 worked for me within 2 hours. I was virtually on the floor with weakness. Within 7 days I could do almost within reason. I hope as gardening, painting fence panels and walking 10 miles from being unable to walk 10 steps!!

I’m guessing that if one has a gene issue then with or without ones thyroid it’ll still be picked up. But not 100% sure on that. As I have to gene DIO2 but my sister who’s had thyroid cancer does not. I phoned Regenerus Laboratories when my sisters result was negative and they said not all siblings will have the faulty gene. But she does also have a conversion issue too.

My private Endocrinologist prescribed T3 for me. It was quite easy. I got mine from Germany a brand called Thybon Henning. I got over a years supply for £60. That’s all. So if you decided to get it from Germany pm me and I’ll give you the details of where to get it and how.

For me it’s been a life saver I don’t know what actually happened to me last year. I was sort of ok and working but getting very tired and being quite unwell. Then bang I collapsed ended up in hospital but still no help. I went into hospital 3 times. My cortisol was as very low, hr low, blood press low, T3 very low, double vision. In a mess really. I kept collapsing constantly. I couldn’t hardly walk. T3 I believe saved my life. As after 4 weeks on it my cortisol has increased from 68 to 466 (155-607). It was unbelievable and I felt so good too. Now my thyroid and cortisol are both very good. I put in 28lbs last year due to being so bad. Since starting T3 I’ve lost 22lbs without trying. Still some to go. I know weight is the last thing on your mind when your so ill but once I started to feel better I was losing weight, only a pound a week nothing drastic. But I’ve hit a plateau now. I don’t care I’m just so happy to be normal in myself.

Please look into DIO2 test as this just may be your proof you’re a poor converter.

I now get my T3 off the NHS recently. Eventually they’ve recognised I really do need it and the gene test result helped.

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Shellian
Shellian
in reply to McPammy

Wow McPammy that really is amazing that the T3 worked so quickly. Thank you for explaining about the test and how to go about sourcing g T3 also. I may consider the test if I can't increase my vitamin levels. I will also pass this info to my niece, who us in Australia who also suffers and is having trouble getting all levels sorted. There are five in our family with the MEN2a gene. My dad, my brother, myself and one of my daughters. My youngest daughter, and my niece's twin brother do not have it. Bodies are strange and finely tuned things.

Thank you again and best wishes with your future health.

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cazmania7
cazmania7
in reply to McPammy

Thanks for this McPammy! Will read in more detail when my brain is not porridge!! 😀

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cazmania7
cazmania7
in reply to McPammy

Do you no longer take levo now? Do you take NDT or just T3? Amazing story. But to suffer for 11 years. Very very sad...

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McPammy
McPammy
in reply to cazmania7

I take liquid Levothyroxine 75mcg and two 5mcg T3 liothyronine daily.

To be honest I don’t understand why I need Levothyroxine as I can hardly convert. I wonder where all the Levothyroxine goes to in my body.

12 years ago I was in 150mcg Levothyroxine alone. I needed to keep reducing throughout the years as my TSH snd T4 levels said I was over medicated. I often had problems but no Dr knew what was wrong. Last year I hit a wall and collapsed and kept collapsing. I was sliding down walls and sometimes could hardly speak. I couldn’t hold a knife and fork. Without being too dramatic I did think it was the end. Then finally I got T3. I had requested a trial but the NHS Endocrinologist kept saying no. He thought I might have a neurological issue. I didn’t. I saw 3 neurologists and all said no neuro issues. I lost my dream job too. I was a consultant so on contract and lost my contract. They did wait 6 months for me but there was no chance I just couldn’t go back. I was housebound for nearly 15 months. I absolutely detest the NHS for abandoning me. I doubt I’ll ever trust them again.

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cazmania7
cazmania7
in reply to McPammy

Heartbreaking. And no one understands!! I too felt like I was dying in the beginning. I’m used to it now but it feels like a half life! I will keep your details. I’ve got a colleague in the office who’s sister lives in Germany so if I have to take matters into my own hands I will. The NDT I’m starting is a quid a day and his squiggle (signing prescription) was 65 quid alone. I’m really happy that you are better. Would you say you are back to normal? They day I can jog I will think I’m back to normal but I really wonder if it’ll ever happen again

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McPammy
McPammy
in reply to cazmania7

My private Endocrinologist doesn’t charge for the actual prescription.

I’m so much better. I’d say I’m 95% normal now. But the NHS cannot prescribe me ThyBon Henning which I feel I’m best on. I’ve just started Mayne Pharma from them. It seems good but I’m too thirsty and constipated now. There’s always something. At least I’m quite good besides those annoying things. For me T3 has been a miracle.

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Sally56
Sally56
in reply to McPammy

Hi McPammy,

I'm currently taking Levo 100mcg x 6 times a week and 5mcgs of slow release T3 (which has been the only successful way I can take T3 because of my adrenal disorder).

I just googled liquid Levothyroxine and it says that it is better absorbed that ordinary Levo for people with lactose intolerance. I have been lactose intolerant for 15 years (diagnosed by stomach biopsy). My TSH is really high again and my GP thinks I'm not compliant but I am. I see my Endo next week and will ask about this, so glad you mentioned it. I have of course tried everything else and still have the crushing fatigue Batty talks about. But the T3 improved me incredibly especially the brain fog. The fog was so bad they tested me for brain damage and I came out with a memory impaired diagnosis. However, I am now doing my PHD, so T3 has been a savior to me. I would like my body back though!

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McPammy
McPammy
in reply to Sally56

Hi.

I’m so glad your brain fog has gone and well done you doing your PHD 👍.

I only started taking liquid Levothyroxine this year after 11 years on tablet form. What I like about it is that you can measure your dose to fit your needs. As it’s liquid you draw it up in a syringe then squirt in your mouth. I get it on the NHS no problem now. I can’t seem to take my dose of 75mcg in one go. I have to split it and take 38 then another 38 a few hours later. I don’t know why but if I take the 75mcg in one go these days I get that sudden braking in my body and can hardly move until it’s worn off. I also go very hot and my heart rate goes high like 170 bpm. So smaller doses and I’m ok. I also take 5mcg T3 twice a day. I didn’t know they do slow release. I have to be careful as if I go slightly over once again the brakes slam on and I can hardly move until is worn off. I feel like I’m walking a tightrope with my narrow system. Maybe it’s to do with my DIO2 gene fault. I’m not really sure.

I’ve just had my bloods done and they are all good with exception to my cholesterol. It’s gone high 6.7. I eat so well I can’t understand what’s going on. I’m a veggie and eat lots of fruit and veg mainly.

I do hope you get some luck with liquid Levothyroxine then.

My adrenals seem to be fine now with T3. I hope both of us keep going in this direction 👍

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Sally56
Sally56
in reply to McPammy

Hi McPammy,

Thanks for answering. This is an usual description you have "brakes on" is it weakness? no energy? Both? It;s so hard to articulate how we feel isn't it? Yes they slow release T3 is the only one I have been able to withstand. It works well for me but not above 5mcgs, higher and I go into adrenaline rushes. They're awful things. Like anxiety only no anxious thoughts. My cholesterol has been high since my thyroidectomy no matter how well I eat. I eat Michael Mosley's diet which is Mediterranean , no booze, coffee, low sugar and low carbs. I am also a poor converter from T4 to T3, I probably have the gene but have not bothered with the test because we know I don;t convert well (if at all). My T4 and T3 readings are generally good (as recommended on this forum), I just feel crap. I have no tolerance for exercise and like others mentioned take ages to recover from burst of energy. I try to budget my energy, but even then I'm never sure why I crash. T3 is important for the adrenals of course, but not in my particular case.

I am so looking forward to trying the liquid levo! Good luck.

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McPammy
McPammy
in reply to Sally56

Brakes slammed on is how I feel if my levels T4 or T3 go over. I know immediately. It’s no energy and no strength. I feel energy is thyroid and strength is adrenals/cortisol. Did you have a synacthen test for Addison’s. I had the test thankfully not Addison’s. Why my cortisol got so low I can only guess due to very low T3 for too long. My ferritin was low too and my B12 also too low. I had been trying to lose weight back then and was dieting a lot. I didn’t realise my thyroid levels were out. My GP increased my Levo from 75 to 100. That’s when I became seriously bad and collapsed. In hospital and they said no Endocrine issues!!! I could barely walk. I kept collapsing endlessly. I now have B12 injections 3 monthly. Constant supply of ferris fumerate for ferritin and the T3 with liquid Levothyroxine. My cholesterol has gone higher though. It’s now 6.7. Only two months ago it was 5.8. I’m walking 10,000 steps most days now and eat healthy I don’t know why it’s gone up.

I’m sorry about your energy levels. Could it be your cortisol if your thyroid levels are ok.

I get my bloods done monthly now. I always get my cortisol done too. Last time at 9am it was 466(155-607). This time it was 335 a little lower at 9am. Prior to T3 it wouldn’t go above 150 at 9am.

I’m experimenting with different brands of T3 as I really have a reaction when changing. So far nothing beats ThyBon Henning for me. And coming close second is Mayne Pharma. I don’t know anything about slow release T3. Sounds interesting though. What are the intervals you need to take it please.

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Sally56
Sally56
in reply to McPammy

HI McPammy

That sounds familiar the no energy and weakness. I just have stopped trying to find a reason why I feel like I do. I am getting better but know that the next crisis (whatever form it takes) will throw me back to bed again.

The T3 I take is compounded on prescription from my Endo. I live in Australia and that is how you get the slow release. To be honest I have know idea how they make it slow release. I take it when I wake around 4.30 to 5am. Then go back to sleep till 7 or 8am depending on what I have to do that day. I take the T4 with it.

My cortisol is high and low, no reason found as yet. It could be pituitary as I have a high ACTH and high TSH at the moment. But it could be the primary aldosteronism, this adrenal thing I have that produces too much aldosterone and cyclical cortisol. Bit mad. I'm not sure where you are but I know the UK forumers have difficulty accessing T3 which is just cruel.

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McPammy
McPammy
in reply to Sally56

Yes it is down right cruel. One day history will look back at this as a real scandal. All down to money.

High ACTH is sometimes related to Addison’s disease. Have you had a synacthen test to rule this out. Do you have any pigmentations on your skin showing patches of darker skin. This is as a result of high ACTH trying to get your adrenals working.

You must rule out Addison’s as if you have it, it is very important to be on Hydrocortisone medication. Has anyone suggested this.

They thought I might have Addison’s however, I past the synacthen test.

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Sally56
Sally56
in reply to McPammy

HI McPammy,

Yes I've had that test and negative and my adrenal disorder makes too much aldosterone, and in Addisons they make too little. My endo out me on cortisone without testing me, over a year ago now and I ended up in hospital. I did not need more cortisol. When cortisol is cyclic, it can be up and down and it takes a lot of testing to get the results right for a proper diagnosis. It took years to get the Primary Aldosteronism diagnosed, they kept saying that it's too rare. My friends Dr. Google and I worked it out a long time before the medicos. I see a specialist who is a world class researcher into it and have been the subject of many a paper and medical journal article. However, I still have to live and no thyroid and stuffed adrenals mean a crappy life, but it's the only one I have so I get on with it. The forum has helped me so much.

The whole system in the U.K. seems to be under siege. My aunt passed away in an NHS hospital near Winchester about 3 years ago, I rang to speak to her, saying I was calling from Australia, that my sister was on a plane over Singapore, but on her way and I wanted to say goodbye. I was stunned that the nurses told me that they didn't have cordless phones. I was unable to say goodbye and she died before my sister landed. I know it seems silly to bring this up as a point of difference, but it made me understand that the NHS is not comparable to what we have here in Australia.

Australia has a private and public system and the private care by comparison forces the public to be up to date with it services (where possible). I have heard the NHS is failing and with Brexit (you poor things) it is a terrible strain on anyone with a chronic illness.

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cazmania7
cazmania7
in reply to McPammy

How much is that gene test please? Is it simple enough to do? I’ve just ordered the adrenal saliva test

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McPammy
McPammy
in reply to cazmania7

I’ve put all the details in my previous post replying to Shellian. Please see two posts above.

Thank you 😊

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Batty1
Batty1
in reply to Shellian

Having no thyroid is no joke ...

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Margo

I can relate to most of what you have written Shellian.

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Buxon

I was sick and tired of feeling tired. Didn't have any energy to do anything. I would fall asleep during having a conversation or watching TV. Couldn't even make up my bed or read two pages from my 2 year old granddaughter's bedtime book. I was extremely depressed feeling helpless and worthless. When human growth hormone injection was introduced, I was hesitant to try but what a life saver. I am now able to do things again. I do still have occasional days when I feel totally exhausted but no comparison to how I used to feel prior to injecting HGH.

I do wish you well.

1 like
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Sillky
Sillky
in reply to Buxon

Is this a new treatment for Hypothyroidism ? Sorry was reading through comments and noticed yours and wondered if you were being empathetic or were hypo too

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Buxon
Buxon
in reply to Sillky

I've been diagnosed with panhypopituitarism. So naturally my harmones are 'hypo'. Hence me having to take steroids, levothyroxine, human growth hormone plus a host of other medications due to dominoe effect!!

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Simonsky

I get this a lot and I haven't even been dignosed with anything other than M.E and fybromyalgia. Usual story with blood tests 'noraml' et cetera.

During a typical day I can fluctuate wildly from feeling ok-ish to utterly gutted and barely able to stop myself sliding out of my chair onto the floor and lots of states in between.

No help from doctors of course, one of the better ones admitted to me that medical science is still failing 'us'. Scandal really when so many affected and life quality blighted for years (I've had this condition now for about 16 years).

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Batty1
Batty1
in reply to Simonsky

Simonsky, I have chronic pain now since I lost my thyroid to cancer (I developed Psoriatic Arthritis)and now I think maybe I have fibromyalgia because I can't be touched without feeling some sort of pain its bizarre.

Chronic pain is a real issue and fatigue is nutz.

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Simonsky
Simonsky
in reply to Batty1

Hi Batty1,

It's really hard work coping with these symptoms. The psychological effects can be as bad as the purely physical. Still little response from medical profession.

The only relief I get is when I go to see a bio-energy healer in London called Seka Nicolic. The results are astounding (less pain, energy levels higher, better mental health) but it only tends to last three months then you need top ups and it's £150 for each session.

If anyone has the money, I'd advise them to try her BUT I can't guarantee it will help, just my experience and many other M.E sufferers.

I often wonder whether cannabis would help-I need to legalise it and use it for safe, health enhancing purposes.

Good luck with things!

2 likes
Reply
delise176
delise176
in reply to Simonsky

Count me in on this too. Not diagnosed as uninsured in the US but pretty positive I have myofascial pain syndrome... Free t3 always just over bottom of range and high reverse t3. Untreated. I find I am like this more in the morning early afternoon...often around 5pm I'm like a new person. Pain is near constant though. 9

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Simonsky
Simonsky
in reply to delise176

Yes, facial pain can be a problem as well and a general feeling of feeling like crap.

I'm similar to you, waking up in the morning feeling like death and that you can't go one which rapidly improves as I move around then terrible after lunch followed by a revival and then sink again late evening.

Trying to to mental tasks during these episodes is very difficult. I also get burning legs and soles of feet even after minimal walking. I feel I shouldn't moan too much because it's not life threatening but it really hammer's your quality of life and sometimes reduces me to despair.

I wouldn't like to be in the US system. That must be tough-I hope they push through Medicare for All soon given the health disaster that the system is. Tories here in UK would privatise everything in sight if they could.

I've had my problems for 16 years and no real diagnosis, pretty awful really.

Good Wishes

1 like
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Batty1
Batty1
in reply to Simonsky

No we don't want Medicare for all its a lousy system that leaves many people NOW particularly are elderly with substandard care and worse they still have to pay for it and quite a bit my mother pays out of pocket $750.00 per month for medicare and Secondary Insurance and still can not get 1/2 her prescriptions because of some stupid donut hole.

The US has medicade for those who need health help and programs and you can't be denide care if you go to emergency room.

What they need to work on is prescription cost.

I'm a big NO for gov't run healthcare they can't even manage Medicare or Medicade its almost bankrupt and thats not even a fraction of our people. I shudder to think how people like me would fair fighting just for basic care and waiting a year for Endo appt while my health deteriorates and sadly I do this right now with Govt Run Military medical (hubby retired military)...its not fun or productive having someone tell you that you cant have a medication because its too expensive or we just dont have it even though you need it or been on it forever.

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Simonsky
Simonsky
in reply to Batty1

I understand there is a big divide in US between the more Libertarian small Government approach and Big Government ideas like the Green New Deal and single-payer health care for all.

I'm an economist and very much for re-nationalisation in the UK and more support for our NHS but I respect your views. Doesn't Bernie want to deal with the price gouging of Big Pharma?

Anyway-shouldn't be discussing politics on this site!!

Good Wishes,

Simon

1 like
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Batty1
Batty1
in reply to Simonsky

Politicians in my opnion will say anything if it can get them a vote and all of them talk about big pharmaceutical companies and cost and green new deal but none of them have real solid ways of accomplishing any of it without forcing people to pay dearly.

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Simonsky
Simonsky
in reply to Batty1

Just a quick remark as this is not a politics and economics site(!)

In the case of the US (and UK) it's myth that the Government can run out of money. Only if you are on a gold standard or use a foreign currency can you run out of it.

They don't want you to know that because it undermines corporate interests. So in the UK, austerity was completely unnecessary and probably killed about 120,000 people. There was no deficit problem at all and there isn't in America because a Government that issues its own currency can never go bankrupt. There can be too much money and cause inflation but there is no risk at the moment.

Green New Heal can be paid for and will help average Americans, 40% of whom can barely get a $400 bill together at present (so much for Trump making America Great Again). He's certainly made America GRATE!

Don't believe what the MSM tell you on this.

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Batty1
Batty1
in reply to Simonsky

Lol...your right not political site but health care is a big pain backside for every country.

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Donna5658
Donna5658
in reply to Simonsky

Everyone I know who is on Medicare (including me) is delighted with it and Medicare for All would be a HUGE step forward. Adequate health care should be a human right, instead of available only to those who can afford it. Thanks for your post.

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Batty1
Batty1
in reply to Donna5658

I guess we will agree to disagree!

Let's stay on topic and off healthcare it was innocent question on my part earlier that just went sideways.

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Lovecake

I get this too. But for me it is less often now I take a little T3 as well as Thyroxine. I also get a migraine when my energy levels drop and the fatigue kicks in. I can usually stop the migraine with a prescribed tablet, but still get the fatigue and lethargy for at least a day after whilst my body “resets”.

I got myself a new little job, which is very part time.

Only trouble is, the training I’m required to do is longer hours, I’m struggling, so might not be able to stay there if they are unable to be flexible on the hours I do.

Boosting vitamin D and B12 have also made a big difference with energy levels for me. And using magnesium sleep lotion at night has made my sleep more restful which is also a bonus.

I hope you manage to sort your fatigue with some of the answers here.

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HLAB35

Without a thyroid you will not be producing calcitonin which helps regulate your serum calcium levels**. Now, I don't know much about it other than what I have read from Dr Carolyn Dean's blogs on magnesium*, but I think it'd be worth exploring what can be done from a really good endo as excess** serum calcium can play havoc and compete with other electrolytes that are needed to help your adrenals function properly... so definitely worth asking about these calcium levels (as it is just guesswork otherwise!). Poorly adrenals will wipe you out as other posters have pointed out. One supplement that works well for cognitive support (and adrenals) is a magnesium/zinc/p5p combination - several brands do it including Igennus who also do a very good b complex. I also recommend taking co-enzyme q10 to raise your energy levels and support your heart, but first check for contraindications with meds you are on such as blood thinners.

yourhormones.info/hormones/...

www-news--medical-net.cdn.a...

*Taking supplementary magnesium stimulates calcitonin production from the thyroid.

**Although remnants of thyroid after surgery can sometimes secrete excess calcitonin which will make serum calcium levels plummet - also not good as this will cause an imbalance in electrolytes. Parathyroid hormone PTH works in opposition to calcitonin... to rectify any extremes. However, a small number of thyroidectamies may affect the parathyroid as well, so patients should ideally have calcium levels monitored post-surgery.

ncbi.nlm.nih.gov/m/pubmed/8...

ncbi.nlm.nih.gov/m/pubmed/7...

As a footnote of optimism I know a chap who lived to his late nineties without a thyroid, so it is possible to continue without one... he was of a wartime generation put onto NDT.

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Batty1
Batty1
in reply to HLAB35

HLAB35, I'm glad you posted I bought a while back Ultra CoQ10 maybe I should take them but will they make my cholesterol levels jump I'm already super high.

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HLAB35
HLAB35
in reply to Batty1

That's because of low thyroid hormone...

If you've been prescribed statins for high cholesterol, co enzyme q10 levels can be depleted, but co q10 prevents atherosclerosis*! There are lots of studies supporting coq10's use with high cholesterol and although it may not actually reduce your levels of LDL it will prevent heart issues associated with high LDL. One of the best supplements to help lower high LDL is probably magnesium. Reading The Magnesium Miracle by Dr Dean was a real eye opener for me. It'd be really useful to know what is going on with your calcium and vitamin d levels so you can supplement magnesium accordingly.

wholefoodsmagazine-com.cdn....

*And combats fatigue .... an article on coq10 for fatigue.

wholefoodsmagazine-com.cdn....

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Batty1
Batty1
in reply to HLAB35

I'm not on cholesterol lowering pills...yet!

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wanttobenormalnow

I wonder what his t3 blood results were!

I am sure getting t3 made all the difference in his health

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HLAB35

Yes, and I expect that the NDT helped with that as well.

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cat_77

Hello. I had the same. Extremly fatigue and lots of pain. I also have problem with digestion. I start to have strong pain in my right side than I realised my goldblader and liver might be full of stones. I start taking milk tisle and digestive enzime and I m gonne do a flush to see if it will make a difference. So check ur liver.

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Batty1
Batty1
in reply to cat_77

Hi cat_77, I actually had liver test done (on biologic injections)for psoriatic arthritis (standard) my AST level is high but after 15yr review of my Labs (review every stinking one) and it seems TO ME that my liver enzymes correlate to my TSH levels being high. I have multiple TSH test (only test doc ever did) and CBC, Metabolic panels at the same time and these all connect ...When my TSH dropped on one test my liver enzymes dropped. Biologic injections are a pretty new beast to me so earlier test did not have them as a factor.

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Cheekycharlie1981

Get your iron and b12 checked, you might have anemia. This can cause so many nasty symptoms like breathlessness. And it won’t help your thyroid levels.

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Batty1

Cheekycharlie1981

I've had 2 iron panels both show slight issues because of IBS-C having colonoscopy end of October. I upped my red meat intake as my bloods always show low end protein levels but this is my entire family for some reason.

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Cheekycharlie1981

I don’t absorb all the goodness I take in, I supplement etc and still end up off the charts. Black pudding etc did not help much. Ibs is awful I have terrible bowels, leaky gut.

You need your levels to be optimum to feel well. Magnesium can help as it should aid a better nights sleep.

Wishing you well I feel awful at moment.

If only I could find another Levo without dairy as Teva is making me feel rubbish. X

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Batty1

I do magnesium every night...love this stuff

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Cheekycharlie1981

Add some zinc too. :) selenium can also help.

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dtate2016

Agree with Cheekycharlie. Zinc and selenium can do great things! The other thing I would suggest is digestive enzymes / proteolytic enzyme‘s. They can do great things with conversion.

And last but not least turmeric! My husband and I make our own we mix the turmeric with black pepper and buy the capsules and take a couple of them each day ( it’s so inexpensive to make them yourself!) my husband sometimes takes four a day for his Hemachromatosis . Why do you bring up hemachromatosis you ask? We have blood test proof that hemachromatosis keeps iron levels in check. One way or the other. In his case it’s too much iron . He can do all the things that it takes to keep iron levels lower ( less red meat, have blood removed, etc.). But with turmeric he can get away with eating red meat and he doesn’t have to have the blood removed at the hospital. He has a wonderful doctor and we’ve told her of our experiments and she tests his blood all the time and she said keep it up ! I have Hashimoto’s and it works for me in the opposite way. It’s like the body knows what to do with turmeric.

I have conversion problems (Take NDT) my doctor - told me that I do and he suggested the digestive enzymes - tremendous energy with proteolytic enzymes.

Lastly - try Black Seed Oil. I hesitated to try it - because I really didn’t believe it - but I receive so much energy. I think the key may lie it how it heals leaky gut. I do other things for leaky gut like olive leaf extract and garlic.

Do share what you find that helps - I would try the selenium and zinc first!

1 like
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Batty1
Batty1
in reply to dtate2016

I love turmeric powder with black pepper in my smoothie everyday for years I really feel it if I stop for a bit. I'm going to look for those proteolytic enzymes..thanks

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Cheekycharlie1981

Nice to hear your doing well. I have to be carful as I have histimine intolerance so spices are not great. Turmeric also speeds up bile production and I’ve no gallbladder.

It’s very hard to balance my diet, what benefits thyroid increases histimine intolerance and vice versa.

What’s the black seed oil actually do?

Optibac max strength are great for histimine intolerance as you’ve to be careful which probiotics you take.

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Batty1

I had no idea that turmeric and gallbladder removal...that's very good to know. Thank you!

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SilverAvocado

One thing to think about is whether it might be caused by something. I've had a lot of pay-back type fatigue where it turns up long after I've done more activity, like days or weeks later. I've also experienced trying to increase my activity and getting away with it for a couple of months and then suddenly crashing.

Some of the things I can remember that have caused my big crashes:

- Going to a weekly Tai chi class (this is the one where I went to 5 or more classes then suddenly couldn't take it)

- Dancing with a friend's three year old to ONE song on the radio and having a game of catch.

- Joining a friend and her children to go swimming and then afterwards waiting around most of the afternoon for the kids to do activities. If I did something similar alone I'd have come straight from bed and gone straight back to bed after, and didn't really realise I'd done so much more than usual.

- These things don't happen as much more recently because I have become very very skilled at keeping my activity low and knowing how much I can take. Recent crashes have all been caused by infections. I had a brief flu that seemed no big deal but gave me worse fatigue for months after, another time a chest infection that was pretty bad and wiped out my Summer.

Another thing is maybe the dose reduction has taken a while to catch up with you. Your new dose is a reduction overall, but particularly it cuts your T3 almost in half. As it sounds like you've gone from being undermedicated to even more undernedicated you may need to reduce your daily/weekly activity and rest more to cope with it :(

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Batty1

Hi SilverAvocado

I'm sure the reduction of meds even though it's no huge amount hasn't helped and the fact that my 3 yr battle with chronic psoriatic arthritis pain also hasn't helped (my pains have significantly reduced) with this medication change and honestly I haven't felt bad with this medication reduction the hand shaking is gone which is good but I'm absolutely positive my T4 meds can come up a little I'm not caring to raise my T3 meds past 10mg daily as 5mg wasn't enough and 18mg in Armour Thyroid I think was too much (hand shaking)was a problem even with splitting the 2 grains.

The fatigue I had yesterday that prompted this post was nothing I've ever experienced in my 49yrs of life it was absolutely terrifying it was like my body turnt to jelly, I seriously could not lift my head it was crazy bad and I was tired yesterday prior to the fatigue attack. I got showered and went and did mammogram and came home when my body turnt to Jelly...just weird and down right scary.

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SilverAvocado

Oh yes, another thing I didn't mention that's given me extra fatigue, getting injuries and that kind of physical stuff like a dislocated knee. Your arthritis pain and inflammation may be like this. found I get my energy bwck at some point in the full length of the recovery process, but I think healing of joints and things is the equivalent of more activity in terms of using up energy/T3. There are so many things that can trigger worse fatigue its hard to list them all!

I have had fatigue with being unable to lift my head before. It sounds like you had a fairly active day. I always find that this shocking payback fatigue can be a lot worse than what would have happened if I'd done less. I have a lot of beliefs /opinions about this that work for me but I'm not sure if everyone is the same. Its much worse for me to eg: go out and do active things in the morning, and then get a big crash in the afternoon and evening. As opposed to eg: spending the whole day doing very light activity and resting a lot. In example two I can often keep any big crashes at bay, and I can slowly push the envelope a little in how much I do in the moderate activity day. I also spend a lot of time in bed in the week... Just reading or watching TV, but its so much more helpful to do that lying down.

Sorry, this has been a bit of a ramble! I am waiting for a friend to come over so have to rush. When I get a chance I would like to go over all your ThyroidUK posts and see if I have any ideas for you. Reply to this post so I get a notification and will remember to do it in the next few days.

I am breaking all my own rules and am doing something fun today, tomorrow, and on Monday before I get to rest in bed all day Tuesday, so might not get a chance to do it until early next week.

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Batty1

Sounds great and your not rambling.

1 like
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Teresamarie
Teresamarie
in reply to Batty1

Hi Batty1

Like you I have psoriatic arthritis and.find myself in terrible fatigue often. I take Arava 20 mg and this only cuts the edge off. For the last two weeks I’ve been walking more to try and get myself ready for my next surgery on my left shoulder. However it seems that the more walking I’m doing the worse the fatigue. I just can’t get it together! After surgery I can go on Humera which should help. What do you take for arthritis?

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Batty1
Batty1
in reply to Teresamarie

Psoriatic arthritis is no joke it's taken me down. I would suggest if you go on a biological medication make sure to NEVER stop cold turkey or your psoriatic arthritis could come back 10 folds....My Rheumotologist said my PSA flare is a result of Doctors stopping at that time (Stelara) prior to thyroidectomy and not putting me right back on it, never again will I stop my biologics and not start back up right away...biggest mistake I ever made and Ive been paying for it for 3 yrs and by the time my flare goes away and then top with not having a thyroid its a finish its job.

I doubt I will ever recover my health after all this and now fatigue...sigh.

1 like
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Teresamarie
Teresamarie
in reply to Batty1

I never linked it but I ended up with osteomyelitis of my jaw after an extraction and had to stop my biologic cold for a year. Now facing another surgery but I can start Humera up again. I’m so tired of being tired!

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Denise29w

I know exactly what you mean. There's been times when I don't have the energy to lift a knife and fork. I was 125 Teva( I have no thyroid). Having had sneezing fits and read about teva have recently changed brands. I feel to much better, still tired but not that desperation to lie down and sleep. I'm hoping the brand change is the reason for my improvement. A lot of my other symptoms have also improved - severe stomach issues, mood etc

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Batty1
Batty1
in reply to Denise29w

You and me in the same crazy boat...I'm hoping this jell-o fatigue isnt going to be my norm because Im seriously not just going to deal with it.

I keep thinking this jell-o fatigue hit so fast and so hard what if I was driving or walking, could I crash or fall since it came on fast and severe with no warning?

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Cheekycharlie1981

Which brand are you taking now? I know others who change felt better. But then you’d think Teva would do a better job without the lactose.

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Denise29w

I take north star and wo ckhardt. They don't have mannitol or acacia in them

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Lealea1981

Yeah I feel like that every day. I've been on Levothyroxine for 18 months now. Currently on 150mcg daily and still feel no better

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Betty41

I have no thyroid. I am permanently tired and some days the fatigue is overwhelming.

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Sedum

May be of help...Highly absorbable magnesium and H2 water helps. I take sisel H2 sticks see them at zest.sisel.net Put a stick (powder in a long sachet ) into a water bottle full of water. Shake and leave it to work for 10 mins, drink soon to get best benefits. There was a good article in natural health about magnesium and H2 being great for helping breathing difficulties. Also helped bad cramp very quickly.

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Gilbo72

So I was originally diagnosed with Hypothyroidism, then a new GP refused to entertain the idea I had a thyroid problem and would not prescribe any medication so I battled on. I remember going for a short jog (I was a really good runner) 10 mins in, suddenly felt like a plug had been pulled. I suddenly was so exhausted it took all my strength to drag myself home and curl up in bed for the next week, everyday I woke up exhausted. It felt like oxygen was not getting around my body, I couldn’t think I was so tired. I explained it to the GP who decided I had ME. I’m treated now, and have never had that again (close but never so acute). Knowing what I know now, I reckon my T3 was rock bottom and I used it all up in that 10min run.

Hope you feel better soon. X

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Queenbee475

Batty1, YES, I’m so glad you posted this, I am SO exhausted, difficultly sleeping, body tired can’t shut my brain down, like you I had a thyroidectomy, my thyroid had calcified, oh and at the same time no appetite and constantly belching and passing gas, I tried b12, folic , nothing helps I’m miserable, 😢

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Batty1
Batty1
in reply to Queenbee475

Having no thyroid is no joke. Have you tried a probiotic? I suffer IBS-C and probiotics has helped alot although not a magic bullet. I'm with you when it comes to lack of appetite although that has not stopped this god forsaken weight gain...

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