Levothyroxine and Fatigue: I recently found out... - Thyroid UK

Thyroid UK

137,820 members161,642 posts

Levothyroxine and Fatigue

KevBounce profile image
64 Replies

I recently found out that I have Hashimoto's in June of this year. My doctor just put me on Levothyroxine about 10 days ago because my TSH is now high. Has anyone else experienced fatigue and coldness with Levo? I'm so tired and my feet are ice. My depression is worsening. I wrote to him and I'm waiting a response but I'm wondering if anyone else has had this experience and what it came down to.

Written by
KevBounce profile image
KevBounce
To view profiles and participate in discussions please or .
Read more about...
64 Replies
Lotika profile image
Lotika

The problem, I think, is that the doctor likely told you to take the medication and you will be fine. Long term, that is very likely correct. In the short term, however, many of us feel worse when starting treatment, particularly as the dose needs to be adjusted slowly over time. It took me ages to feel better. I am guessing you are on about 50 mcg of levothyroxine?

As your body gets used to it and as your doctor slowly adjust your dose things should improve.

In the meantime, hang tight and better advice will arrive! With hashis, vitamin levels are important as it alters your stomach acid, making vitamin uptake a pain! Did the doctor run any vitamin checks?

Lotika.

Wired123 profile image
Wired123 in reply to Lotika

Agree with this. It takes time to heal and you do need to slowly increase dosage. If you can afford it or have medical insurance go and see a private endocrinologist who will get you better faster.

If you can convince your GP to refer you to an NHS Endo that’s also an option but you may not get an appt for a while.

Have you got any blood test results you can share, make sure you include the ref ranges.

KevBounce profile image
KevBounce in reply to Wired123

I requested a referral to an endocrinologist a couple weeks ago and he wrote...

"Typically, treatment for Hashimoto's can be done in the primary care office and in Endocrinology referral is not indicated."

Wired123 profile image
Wired123 in reply to KevBounce

Ask again, change GP and try there or go private.

Peanut31 profile image
Peanut31

Hi

When I was diagnosed with Hashimotos I was told that no medication would help me and eventually my symptoms get worse, until I was put on levo.

Yes your symptoms are very common with thyroid issues.

Levo, didn’t work for me, I now self medicate on NDT and a small amount of levo, but, that’s not to say levo will not work for you.

When you feel so ill, cold (it felt like I had ice cold water running through my veins and feet like ice too) and you just can’t look forward to anything, your desperate for a quick fix.

Just remember you will start to feel better, but, it takes time.

All of us on here have been in the same position as you.

What dosage of levo have you been put on?, they recommend increasing your dosage 6-8 weeks after a blood test on your first dosage.

Just testing TSH is no good, you need to test, TSH, T3 & T4. A lot of GP’s will only test TSH, and maybe if your lucky T4 as well, but it’s T3 that needs testing too.

Unfortunately, this is not recognised with the NHS.

One thing I will say, is don’t just rely on levo to fix you.

Try going gluten free, take vitamins to support your thyroid and try and look at your diet.

Best wishes & good luck

Peanut31

Borja profile image
Borja in reply to Peanut31

Try Keto

mountainice profile image
mountainice in reply to Peanut31

Just to say my gp, or the lab (as it seems the lab often determines what gets tested, according to the gp) tested for FT4 as well as FT3. I didn't even know I was being tested for those things as I didn't know I had a thyroid problem till much later, and only then because a retired gp mentioned it to me after asking for my results. I have had FT3 tested about 3 times now with the gp practice, so it is possible, perhaps not all practices/labs do it though. I can see why they did as my TSH was going up and down to 5, so I suppose they wanted to check out further.

TheProf profile image
TheProf in reply to Peanut31

Whatever advice you follow try not go change more than 1 thing at a time. Try the levo, after a while try one of the other suggestions.

SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Do you have test results from before starting on levothyroxine?

Have you also had vitamin D, folate, ferritin and B12 levels tested?

These are frequently very low and often need supplementing to improve

How much levothyroxine are you currently taking

It takes 6-8 weeks for each dose to have full effect.

Bloods should be retested 6-8 weeks after each dose increase. All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

SlowDragon profile image
SlowDragonAdministrator

Gluten and/or dairy intolerance are common complications of Hashimoto’s

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

Buddy195 profile image
Buddy195Administrator

I had very similar symptoms so hang in there! You will feel better when you are on the correct dose of Levothyroxine, but equally important is getting key vitamins in range. I test my thyroid and vitamins privately using Medichecks, then post results on this forum. Experienced & knowledgeable members will then offer you fantastic advice and support. It’s not a ‘quick fix’, Just hang in there. You will get lots of advice and support on this forum!

KevBounce profile image
KevBounce

Thanks everyone. My Doctor put me on 50mcg. My TPOAb is 1,209.1 IU/mL

(0.0 - 6.0 IU/mL) and my TSH is 6.92 uIU/mL

(0.3 - 5.5 uIU/mL)

I have a fear of taking multivitamins right now because I don't want anything to affect absorption of the Levo. I tried taking vitamins at night but it disrupted my sleep. My Vitamin D level is within range, selenium, iron, zinc, B12, ferritin and folate are normal but I am low in Vitamin B6, Choline, and Vitamin E. I have a heavy dairy casein protein intolerance. I always take the Levo first thing in the morning, around 4am, then wait 2 hours before eating. I have been avoiding gluten, dairy, and soy. My diet could use some work but it's not enough to cause the level of fatigue I'm experiencing. I'm just worried that my body is converting the Levo into rT3 and blocking out the receptors for T3. The side effects I'm experiencing are exactly the opposite of everything I have been reading. I have no anxiety, I'm cold instead of hot, I have no energy, etc etc.

in reply to KevBounce

Out of pure curiosity, did Levo help at all for the first few days?

I assume some of the fatigue / feeling cold was also present before Levo?

KevBounce profile image
KevBounce in reply to

Oddly enough I felt good the first 2-3 days. Yes, I was cold before I started taking it but I feel like I'm colder now.

in reply to KevBounce

KevBounce this roughly mirrors my experience. I have a theory (which I found out Dr. Kenneth Blanchard shared as well - author of Functional Approach to Hypothyroidism). And it is as follows. TSH and FT3 have a diurnal rhythm. FT3 follows TSH peaks with a 90 minute delay. Taking T4 will give you a boost at first but then suppress your TSH and thus potentially T4 -> T3 conversion.

Now.. before anybody gets mad at me. T4 monotherapy probably works. Sometimes. But I'd suggest maybe stay open to the possibility of augmenting with T3 in the future. At least know that it is an option when you're feeling low.

Best wishes.

Lotika profile image
Lotika in reply to KevBounce

I distinctly remember that my first post here was about feeling worse on starting treatment :( You are absolutely right that vitamins can inhibit levo uptake. My strategy when on T4, which I took in the morning, was to take vitamins in the evening, to get a maximum gap.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

50mcg is only a starter dose

Bloods should be retested 6-8 weeks later

Dose step up by 25mcg .....wait 6-8 weeks...retest

This continues until TSH is definitely under 2....will often be well under one when adequately treated

Most important results are always Ft3, followed by Ft4

Ft3 at least 50-60% through range and Ft4 likely in top 1/4 of range

All thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Lactose/dairy intolerance can mean you may need higher dose levothyroxine than typical

Presumably you have lactose free levothyroxine?

We never recommend taking multivitamins....too little of what we do need...plus stuff we don’t want

Test Vitamin-D, folate, ferritin and B12

These need to be OPTIMAL....not just within range

Come back with new post once you get results

KevBounce profile image
KevBounce in reply to SlowDragon

Thank you SlowDragon. He plans on testing again in 4.5 weeks. I just don't know if I can wait that long like this. Free T4 is at 0.89 ng/dL

(0.6 - 1.4 ng/dL) within the last month. He didn't check T3. Last it was checked it was June with 3 (2.4 - 4.2) At that time my T4 was 0.6 (0.7-2.5). I presume you may be right about needing a higher than typical dose of Levo due to dairy issues. Although I haven't had any diarrhea or cramping issues since starting Levo. The multivitamin I have been taking is "NATURELO One Daily Multivitamin for Men". It's about as good as I have found but I haven't been taking it consistently. I posted my vitamin test results down below on this thread.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

Remember to stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results

Iodine is controversial with Hashimoto’s

Levothyroxine should contain all the iodine you need

Buddy195 profile image
Buddy195Administrator

Can you post your vitamins with the ranges in brackets? Just because vitamins are ‘in range’ does not mean they are optimal. I feel so much better with Vit D, ferritin & folate higher in the range. Do follow advice from more experienced forum members; they have really helped me!

KevBounce profile image
KevBounce

Yes, Buddy195, here are some of my labs within the last month...

VITAMIN B6 (Pyridoxine) 1.72 ng/mL (1.18 ng/mL - 65.63 ng/mL)

VITAMIN B9 4.6 ng/mL (>=4 ng/mL)

VITAMIN B-12 376 pg/mL (180 - 914 pg/mL)

VITAMIN D (25 HYDROXY) 27 ng/mL (20 ng/mL - 80 ng/mL)

Vitamin E 11.91 µmol/L (28 µmol/L - 39 µmol/L)

FERRITIN 138 ng/mL (30 - 400 ng/mL)

IRON 109 ug/dL (52 - 150 ug/dL)

TIBC 304 ug/dL (240 - 400 ug/dL)

% SATURATION 36 % (15 - 50 %)

SELENIUM 156.8 ug/L (23.0 - 190.0 ug/L)

ZINC 77.8 ug/dL(60.0 - 120.0 ug/dL)

CALCIUM 9.7 mg/dL (8.6 - 10.3 mg/dL)

SODIUM139 MEQ/L (135 - 145 MEQ/L)

POTASSIUM 3.8 MEQ/L (3.5 - 5.2 MEQ/L)

CHLORIDE 103 MEQ/L (99 - 108 MEQ/L)

CHOLINE 6.05 µmol/L (8.2 µmol/L - 11.4 µmol/L)

OMEGA 3 2.65% (6% - 11%)

IGA 135 mg/dL (68 - 378 mg/dL)

TISSUE TRANSGLUTAMINASE, IGA 2.47 UNITS(0 - 20 UNITS)

FREE TESTOSTERONE 63.3 pg/mL (49 pg/mL - 185 pg/mL)

CORTISOL 3.75 ng/mL (0.31 ng/mL - 5.05 ng/mL)

DHEA-S 1.68 ng/mL (0.35 ng/mL - 8.47 ng/mL)

ESTRADIOL <11.8 pg/mL (<39 pg/mL)

The ones that stand out to me are Vitamin B6 (low), Vitamin E (deficient), Choline (deficient), Omega 3 (low).

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

B9 (folate) and B12 are too low

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B is another option that contain folate, but is large capsule

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

With such low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

cytoplan.co.uk/shop-by-prod...

amazon.co.uk/Jarrow-Methylc...

healthline.com/nutrition/me...

KevBounce profile image
KevBounce in reply to SlowDragon

Thank you. Good advice. My doctor did suggest I supplement with B12 as well as B6. I just didn't think I needed to because it was so well in range. I will start supplementing with B12, B6 and Folate around noon each day possibly? I'm going to stop with the multi.

I knew about the Biotin affecting results and the multi has biotin.

I looked at my DNA report...

"You have a combination of 2 SNP variations in MTHFR which influence homocysteine levels." 2.9Magnitude

• rs1801131(A;C) is at position 1298

MTHFR rs1801131 (C) or MTHFR A1298C is a mutation in the folate pathway...

• rs1801133((C;T) is at position 677

1 copy of C677T allele of MTHFR = 65% efficiency in processing folic acid

You called it.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

We recommend just taking GOOD QUALITY vitamin B complex ...plus separate B12 for first few months....then you can likely reduce then stop B12....just carry on with daily vitamin B complex

Not sure if you can get Igennus (U.K. brand)

But Thorne is good make often recommended

KevBounce profile image
KevBounce in reply to SlowDragon

I was able to find Igennus and Thorne on Amazon. I have a lot of homework to do I suppose.

Peanut31 profile image
Peanut31 in reply to KevBounce

Hi KevBouce

The key is research, research research, don’t rely on your GP to have the answers, and don’t rely on them to get you better.

Your in control of your own well being and everyone on here is in the same situation.

If you can’t remember things at the moment (Brain fog) then use post it notes or get a note book for making thyroid notes.

I can recall those days when I was desperate to feel well, but, you have to ride it out I’m afraid.

Keep a diary of how your feeling with the increases, I did that.

Don’t be fobbed off by your GP either. When I first started this journey I listened to every word I was told by the GP and, endo I paid privately for.

This turned out to be a waste of time and money.

This forum helped me get me back on track and I am very grateful for that. Remember just because something works for one person, it may not suit you.

Good luck.

Peanut31

KevBounce profile image
KevBounce in reply to SlowDragon

I decided to go with Thorne's Basic B Complex.

It has the highest Choline and highest Pyridoxal 5'-Phospate. Also the lowest B12. I don't want to take too much B12 but 400mcg should be good. I will remember to stop taking it a week before my labs. I also picked up Vitamin D 1000 IU. Thanks again.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

I used this option to evaluate DNA that was done originally via Ancestry- for family history

mthfr-genetics.co.uk

KevBounce profile image
KevBounce in reply to SlowDragon

I did sort of the same thing through promethease after getting my raw DNA from 23andme. It's a pretty detailed report so I think I'm good on that.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

Vitamin D also low

Aiming to improve to around 40ng/ml (100nmol)

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

pubmed.ncbi.nlm.nih.gov/300...

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels.

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

Interesting....never seen vitamin E levels tested

Vitamin E and Hashimoto’s

thyroidpharmacist.com/artic...

Some selenium supplements have vitamin E with them

SlowDragon profile image
SlowDragonAdministrator in reply to KevBounce

Thyroid pharmacist on how Hashimoto’s can affect men

thyroidpharmacist.com/artic...

KevBounce profile image
KevBounce in reply to SlowDragon

Thank you for all of your replies and information. You've been very helpful.

AAP10 profile image
AAP10 in reply to KevBounce

Hi KevBounce

You can definitely increase your vitamin d as well. You can increase it through your diet and direct sunlight. Or of course by a good vitamin d supplement but you must retest labs regularly. Just note to take with orange juice for better absorption. Optimal range is 35-60 ng/ML. Lastly I would recommend a great probiotic and prebiotic to make sure the vitamins and levothyroxine is best absorbed. If you prefer not you can drink kombucha. And it is true Levothyroxine might not work for you, but it’s worth trying out. Read carefully the side effects when picking up your prescription. Believe it or not it can make your symptoms worse or show no improvement.

Extra : Journaling to jot down your symptoms along the next couples of weeks may help.

When starting the supplements take one at a time for a couple of days to see how you react to it. You wouldn’t want to have a reaction and not know which pill caused it.

Like everyone has said be patient and good luck !

anuyijl profile image
anuyijl in reply to KevBounce

Hi, probably you should also pay attention to your low Omega 3 value, as it relates to how both the vitamins and hormonal supplements absorb to cells.

KevBounce profile image
KevBounce in reply to anuyijl

I've tried taking fish oil supplements but they give me terrible heart palpitations. :(

waveylines profile image
waveylines

Just to add I would have a look at the symptoms of b12 deficiency on b12.org. Your level of B12 is low. So this may well be adding to your symptoms. Thornes basic B complex which includes folate PLUS a high dose sublingual of b12 nethylcolabamin should help. Please bear in mind that only 1-2% of any b12 supplement is absorbed on average but if you have malabsorption issues can be lower. . No Shot superior Methylcolabamin is good and dissolves easily under tongue. Has your doctor checked you for malabsorption and Intrinsic Factor? Everything gets blamed on Hypothyroidism and this may well be the case and things maywell settle but I would definately be checked. B12 by the way is very important in the utilisation of thyroid hormones so to make sure you make optiumum use of levothyroxine you need this to be well over 500. You excrete out any b12 you dont need. The vitamin bs work together so a basic complex is important.

Tala76 profile image
Tala76

Hi, I had those experience before my diagnosed and after. After changing my levothyroxine dose to 62.5 for 2 days and 50 mico for 5 days I am okay.

But I realised I need to keep the bedroom's temperature a bit high like 24, 25 centigrade , otherwise I feel freezing and sweating

As far as the temperature keeps the same I am okay. But I suffered like you.

My tsh level now is more than normal range, but it looks it is normal for me and it was last time 6.70.

I am taking all multivitamin, iron and vitamin d, e and others. I think my vitamins help as well. As I started to take them regularly, I feel more energetic than before.

cat_alli profile image
cat_alli

I was diagnosed with hypothyroidism in 2008 and started levothyroxine. In 2013 it was further identified I had Hashimotos, however I did not know it might help if I made any changes to my diet. For the next two years I suffered overwhelming fatigue and brain fog and couldn't work. In 2015 I discovered Thyroid UK and the help and advice it offered. I went gluten free and within a week the deep fatigue began to improve. Later I paid for allergy tests privately and found out I was also allergic to cow dairy (goat and sheep dairy are fine) and egg whites. I now follow a diet completely avoiding the foods I'm allergic to, and feel better with more energy than I did seven years ago. Apparently many (but not all) Hashimoto's sufferers are allergic to these foods, avoiding them completely has certainly been a life changer for me.

Wired123 profile image
Wired123 in reply to cat_alli

Never knew egg white allergy was a thing, learn something new on this forum every day!

Which allergy test did you take?

cat_alli profile image
cat_alli in reply to Wired123

Blue Horizon Medicals, one of the ones recommended on this forum. You can choose different levels/prices, I got everything checked and was glad I did. Good luck!

Honey1978 profile image
Honey1978

Im on levothytoxine and it dont do. That to me

KevBounce profile image
KevBounce

This is the reply that I received...

" It is unusual that you are having these symptoms with Levothyroxine. Since you just started the levothyroxine dose, I would recommend observation of your symptoms for the next week. If your symptoms do not improve or worsen at any time, please call our office"

momindenver profile image
momindenver

It could be helpful to check TSH, Free T4, Free T3 levels all at the same time, 24 hours after your last dose of levothyroxine.

tattybogle profile image
tattybogle

Hi KevBounce,When i started on Levo (20 yrs ago) i had results similar to yours, TSH 5.7 rising to 6.8 on next test /T4 within range/ but very high TPOab / had been getting colder and slower for 3 years.

Treating thyroid is a slow game. try and think of reviewing how you feel every few weeks rather than every few days. The body has a complex balancing and rebalancing system for thyroid hormone levels, and adding some orally interacts with this, and there is a reaction which will often make you feel better for a bit , then worse than before, then somewhere in the middle.

The reason they do not start you on a full dose straight away is to allow your body to gradually get used to the increase in metabolic activity at a cellular level. The usual full dose is between 75-125mcg daily for most people, but it may take months to get there.

It will have taken your body several months if not years to end up low in thyroid hormone, and you can expect it to take months for all the cells to get used to having enough again, and making up for their lack of it in the previous months.

I took 50mcg for about 7 weeks , then put it up to 100mcg for about 5 months, then took 150 for many years (after briefly trying 175 which proved to be too much) I now take 112.5.

On 50 mcg i felt nothing for a few days , then considerably better for about 4 weeks, then started to feel slow and tired and cold again, which was time for the first blood test review anyway, and it was then increased to 100, by me , With hindsight it's usually wiser to increase by 25mcg at a time.

The same pattern happened on 100mcg , felt no change for a week , then felt considerably better for several months, then less good again.

So hang in there... i know it feels forever, but if you review every few weeks it's easier on your head than trying to figure out every day what's going on with you.

Swings and roundabouts, and Snakes and ladders are par for the course when trying to get to the right dose of Levo,

Wired123 profile image
Wired123 in reply to tattybogle

I think this is perhaps one of the best posts on this entire forum. You really explain it well for newcomers as well as the rest of us who have been long suffering. Well done!

KevBounce profile image
KevBounce in reply to tattybogle

If I didn't feel like I'm dying every day it would make it much easier to think long term. For this reason I feel a sense of urgency. I don't know how much time I have before I just give up.

tattybogle profile image
tattybogle in reply to KevBounce

I totally understand. And it's much easier to write that advice from 20 yrs down the line, than it would have been to hear it at the time.

I think one of the biggest problems with thyroid disease / treatment is the attitude to it from most of the medical profession, and other people who don't get what happens to the whole body (and therefore your life) when this system has stopped performing properly.

You look perfectly normal to everyone else , (unless they know what to look for)and yet for much of the time you are trying to function with the same level of exhaustion as someone at the finishing line of a marathon, or at the top of Everest. In fact i've often looked at some of those people on TV when they just fall on the floor half an inch over the line, and can't speak, and i think .... ah .. i recognise that state.

And i've seen where people get altitude sickness, and that too looks very similar to the state i recognise.

I've also looked at people on the edge of hypothermia, and i think there are similarities there too.

And in all of these situations, there are folk rushing in with blankets and tea, and support , and acknowledgement of the difficulties you're in.

But no one acknowledges that we are dealing with this and still forcing ourselves to carry on with the essential activities of life. Were stuck in the slow lane, and can see no end in sight.

Doctors talk to you like you're just 'feeling a bit tired', and write similar comments on your notes.

Friends say 'oh come on , come out and play, you'll enjoy it when you get there' , and when they see you the next day they're smiling and say 'are you feeling better now?, you look well'

Everything you read about Hypothyroidism from the NHS say's 'its a simple condition , which is easily and successfully treated'

Meanwhile you're losing yourself, and everything you value and enjoy in your life and work is in danger of going down the pan, and no one is giving you a round of applause for going to the shop and cooking dinner and making kids do homework when your body and brain just don't work properly.

But it took a long time to slowly end up in this state, and it takes a long time to put it right. I think we'd all be able to cope with it better if we were told what to expect , rather than being told 'just take this little white pill every day and you're fixed'.

I do know people who are now absolutely fine again on Levothyroxine , many are Ok on it, and that's part of the reason why Doctors don't give it much acknowledgement as a serious condition.

So be kind to yourself for a few months, it's like when you take a car out that's been stood for a year, the further you drive down the motorway , the better it runs.

It's like watching your fingernails grow, you can't se the difference if you look every day , but they are growing. The damaged bits are growing out, and healthier bits are growing in behind them.

Hope this perspective help a bit, and doesn't just make you want to throw the phone at the wall.

I've tried that too, but the wall always wins :)

KevBounce profile image
KevBounce in reply to tattybogle

That's really how it feels. Nobody understands how exhausted we feel. I'm suspecting that my body just simply isn't absorbing the medication because I shouldn't feel more sleepy than without it. I have a dairy intolerance and the pills have lactose in them. dairy makes me tired. I'm writing to my doctor to ask to switch to something else without lactose.

tattybogle profile image
tattybogle in reply to KevBounce

It IS actually logical that we feel more tired for a while... when we add an extra amount of T4 orally and it goes into the blood, this is noticed by the hypothalamus and pituitary glands in the brain. The pituitary, which is what produces TSH, (Thyroid STIMULATING Hormone) doesn't know that you swallowed T4 in the form of Levothyroxine instead and thinks " great , my thyroid gland has increased production like i asked it to" and it responds by reducing the amount of TSH that it sends out to the thyroid gland , and the result is that your own thyroid then releases less T4/T3.

Also TSH has a small effect on conversion of inactive T4 to active T3 in the cells , so less TSH = less efficient conversion.

This is the system we are interacting with, it's complicated.

And when the thyroid gland is capable of producing enough T4 and T3 in response to TSH requests , it works fine , and keeps the essential T3 in balance , and protects us from being over or under supplied with it for too long, while allowing us to compensate for life and seasons ,starvation, excess, and living in the arctic and moving to the tropics.

TSH has a complex role , it is a bit of a delayed 'feed back' reaction to the levels of T4 and T3 in the blood (this is why they make you wait 6 weeks for a blood test, it takes TSH a while to shift in response)

And it also has a 'feed foreward' mechanism which makes the conversion of t4 to T3 more or less efficient, depending on need.

The effect of adding T4 to this can initially mean that you actually end up with less hormone for a while, until you are taking enough and everything has balanced out again. So possibly, right about now , your TSH will have noticed 10 days of Levo , and be telling your thyroid, to slow down T4 /T3 production /conversion.

Logically , you 'd think , well why not just give us enough T4 (levo)to replace the full amount at the outset, but there are some issues with that idea too. it would put strain on the body that has become used to functioning on less for one.

This is why they start elderly folk or those with heart problems on 25mcg.

You've been given 50 , which is usual starting dose, they'll look at TSH in a few weeks, and should increase Levo dose then.

KevBounce profile image
KevBounce in reply to tattybogle

That all sounds logical. Why isn't fatigue listed as a side effect then? Why are so many people telling me that this didn't happen for them? I've had two doctors tell me that they've never heard of it.

tattybogle profile image
tattybogle in reply to KevBounce

Because1) fatigue is not an effect of the thyroxine itself , so they don't have to. It's your own body's response.

2) because every human is quite individual in their thyroid 'setpoint' in health. And equally individual in their response to these levels being wonky and being adjusted by outside methods. I 'ought' to have become overweight, but i didn't. Some people feel best with thyroid numbers that would leave others on the floor. Someone posted here yesterday with a TSH so astronomically high, and fT4 so low that they 'ought' to be in a coma... and while i have no doubt they feel God Awful, they are walking around and writing full sentences.

3) sadly because doctors have cloth ears when it comes to the word 'fatigue' , so lots of people will have said similar to them , but they haven't heard it.

KevBounce profile image
KevBounce in reply to tattybogle

I agree with everything you're saying but just one thing. All side effects are bodily responses and a body is required for a side effect to occur. So Fatigue is a side effect like any other listed.

You're right that everyone's body is different and in a different level that they can each handle their own way. Doctors really don't have any clue when it comes to this stuff. Just fill out a prescription and move on to the next patient.

KevBounce profile image
KevBounce in reply to KevBounce

The brand (Mylan) of Levothyroxine that I am taking does NOT have lactose in it. Just going to tough it out for another 4 weeks until I get my labs done.

KevBounce profile image
KevBounce

First day on the new B complex and vitamin D. Still sleepy but the coldness is gone.

KevBounce profile image
KevBounce

The vitamin B complex helps a lot with my coldness and improving circulation. I'm still napping during work and tired all day.

KevBounce profile image
KevBounce

I have gained 11lbs in 17 days. Still sleepy. I'm convinced that my body is turning the Levo into reverse T3 and I'm blocking the T3 receptors.

KevBounce profile image
KevBounce in reply to KevBounce

Going to try taking my multi-vitamin, B Complex, and vitamin d at the same time.

KevBounce profile image
KevBounce in reply to KevBounce

Napped for 2 hours.

tattybogle profile image
tattybogle in reply to KevBounce

The idea that rT3 blocks the same receptors that t3 goes to is an old idea that has been shown to be incorrect. rT3 goes to different receptors on the outside of the cell wall, whereas T3 goes to it's own receptors inside the cell.

But lots of internet sources have not updated their material ,so many people still insist it's true and go off on an expensive wild goose chase testing their rT3, which can be high for many , many reasons, most of which have nothing to do with thyroid .

the function of rT3 is basically an overflow valve for if T4 is too high. so yuou don't need to worry about it at all until you are on a full dose of Levo ,and even then it's not as important or useful as sorting out your fT3 /4 levels.

If you want to understand the current thinking on rT3 then you will find that and everything else you ever wanted to know about thyroid science somewhere in this Canadian site:

thyroidpatients.ca/home/sit...

KevBounce profile image
KevBounce in reply to tattybogle

Thank you!

KevBounce profile image
KevBounce

It's getting to the point that every time I'm standing I feel someone is sitting on my chest. I am taking myself off of the Levothyroxine tomorrow.

KevBounce profile image
KevBounce

If anyone stumbles on this thread check out the following...

everydayhealth.com/drugs/le...

I'm definitely not alone.

KevBounce profile image
KevBounce

I have spoken with 4 doctors now and none of them are willing to put me on anything other than Levothyroxine. They will not let me see an endocrinologist. Dead end.

You may also like...

adrenal fatigue should I change from levothyroxine

adrenal fatigue when someone on the site wrote that the leaflet that accompanies the levothyroxine...

Extreme fatigue on Levothyroxine

extremely tired but then that went away after a week. Recently, I started to feel fatigued again...

Vitamin A with levothyroxine

this titrating up levothyroxine. The First Time On it my cornea cracked. Has anyone else here...

levothyroxine

these symptom's are common or if anyone else has had any experience of this. Please help

Levothyroxine

and I'm 44 years old. Before this I was fit and active and now acheing tired and feeling depressed....