Intro, and also: TSH suddenly high - feeling bad. Connected?

Hi all,

Just registered and would be happy to hear some opinions and/or comforting words ;)

I have been diagnosed with Hashimoto's 10 years ago, when I was 27.

I never had any major problems, have always been able to work and live a very active life (exercise, travelling, social etc).

That said, there are some consistent symptoms and little nuisances that never really go away:

feeling cold really easily, cold hands, cold feet, struggling to get up in the morning (always been a night owl but it has gotten worse and even after 8 hours of sleep I am dead tired in the morning).

My stomach is also always bloated. I have tried dietary changes this year. No gluten, no milk, no dairy. But nothing changed.

And what bothers me most: I am generally a bit moody (but that might be just my temper), but ever since the Hashi, I also have periods of really low mood. I don't know if I call it depression, since I am able to function, I feel more sad than numb etc. But I feel generally sad and weak and tearful during these times. I used to always blame my current life stressors for these perdiods, but I do think it has something to do with the thyroid. Sometimes my TSH was really low so I reduced the dose.

Now I have been feeling increasingly bad for a few months. I reduced my LT dose in summer but I fear I might have slowly slipped into going hypo.

My lab from October was:

TSH: 1,40 (0,27-4,20)

ft3 2,66 (1,90 - 5,10)

ft4 1,50 (0,90-1,70)

And now, 14 days ago, my TSH was at 5,61.

The highest it has ever been since my diagnosis (it was also just above 5 back then).

I know why this could be: I accidentally used some old LT 75 tablets and even broke a quarter of them off because I thought it was 125 and my dose should be 100.

So my own stupidity.

I asked for ft3 and ft4 to be checked from the same blood afterwards, to see how it correspondes with the high TSH:

ft3: 2,47 (1,70 - 4,20)

ft4: 11,8 (9,4 - 18.0)

(Mind you, I took my LT dose right before in the morning so this is probably false high)

Long story short. I'd love to get some feedback here. Maybe someone can give me an opinion:

- I have had about the same ft3 and ft4 levels before, but with a TSH around 1,3...and felt better. Any connection? Any reason that a high TSH level makes you feel worse than a lower one, with fts at same level?

- Can I assume that me feeling especially bad right now (very sluggish, easily crying, increased muscle pain in lower back, less appetite than usual) is due to not getting enough LT and being borderline hypo/due to the high TSH level?

- Could it be that the always present symptoms I described above really are to do with never really having found the optimal dose?

I'd love for the bloated belly to go away...

- I am taking 125 now (which was a dose I had been taking for quite a long time before reducing to 100) again. How long does it take on average until I will feel effects? I can't remember really and I read anything from 1 week to 6 weeks,

Thanks for reading. I know it is quite the novel, but I have so many question marks right now.

Cheers

Ellissa

22 Replies

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  • Welcome to the forum, Ellissa.

    Your TSH rose to 5.61 because FT4 and FT3 levels dropped when you reduced Levothyroxine dose and you will have become symptomatic because you were under medicated. It really doesn't matter if TSH becomes low. As long as FT3 remains within range you are not over medicated.

    The goal of Levothyroxine is to restore the patient to euthyroid status. For most patients that will be when TSH is 1.0 or lower with FT4 in the upper range. FT4 needs to be in the upper range in order that sufficient T3 is converted. FT3 (if measured) should be over half way through range although some need it towards the top of range. Read Treatment Options in thyroiduk.org.uk/tuk/about_...

    There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

    chriskresser.com/the-gluten...

    thyroiduk.org.uk/tuk/about_...

  • Hi Clutter,

    Thank you for the quick reply and info, appreciate it!

    I am just wondering if a high TSH with basically same level ft3 and ft4 can explain more symptoms.

    As I said, I had same level ft3 and ft4 as now before but with a lower TSH (between 1 and 2) and didn't feel as lousy as now.

    So interested in the connection between symptoms and TSH - if there is any.

    I am a bit worried that maybe my Hashi has nothing to do with how I feel right now and I just use this as an excuse...then again, the symptoms I have must be classic hypo, right?

    I also suspect I have been slightly underdosed most of the time for many years, since I had my ft3 and ft4 levels rarely in the upper range (especially if you consider that my lab makes me take the LT right before the blood drawing). Could this actually explain the lingering symptoms?

    I read about the glutenfree diet before and have tried it but didn't notice a difference, other than being stressed out about eating out, checking ingredients.

  • Your lab makes you take levo before the draw? What do they do? Tie you down and ram it down your throat? You're a free entity, you can do what you like. Just say no.

    Mind you, if you take it seconds before the blood draw, it's not going to make any difference, because it won't have time to get into the blood stream. But if it's about two hours before, then all you will be testing is the dose you just took. And that won't give you a true idea of your level, and you won't be able to calculate how well you convert, from it.

    TSH doesn't make you feel anything. It just tries to stimulate your gland to make more hormone, because the pituitary senses that there isn't enough in the blood. But, your gland can't respond fully, because it has been damaged by the Hashi's antibodies. So, the TSH goes high if your dose of thyroid hormone replacement is too low.

    It's low levels of T3 that cause symptoms. And your FT3 isn't even mid-range. Most people need it up the top of the range to feel well.

    All your symptoms are more than likely due to low T3. BUT, low nutrients can also cause hypo-like symptoms. So, you should really get your vit D, vit B12, folate and ferritin tested. They need to be optimal, not just in-range.

    It takes at least six weeks to feel the full effects of a dose increase, but you might - if you're lucky - start feeling them about one week later.

    How long did you stay gluten-free? You should give it at least three months, to know if it's going to help. That said, it doesn't help everyone. It didn't help me. But, worth giving it a decent shot. :)

  • Ellissa,

    I think rising TSH will make you symptomatic even though FT4 and FT3 may not have changed much yet.

    You may need TSH suppressed <0.1 to deliver higher FT4 to rid you of lingering symptoms. Read the link in Treatment Options I posted above.

    Your lab can't 'make' you take Levothyroxine before a blood test. It would be better to take the Levothyroxine after your blood draw. You want the circulating TSH and FT4/FT3 levels measured not the recently ingested Levothyroxine dose peaking in your blood.

    Hashi/hypothyroid patients are often deficient in ferritin, vitamin D, B12 and folate which can cause symptoms similar to hypothyroidism so you might ask your GP to test.

  • Hi Clutter,

    Yes, you're right. See my reply to greygoose about my lab "making" me to something.

    I am definitely always deficient in ferritin. Will test b12 and vitd again because it s been a while. I am constantly supplementing though.

  • Thanks greygoose. Yes, well...stupid phrasing about the lab forcing me ;)

    Normally they only test the TSH level and said that it doesn't react directly to me taking LT in the morning. But I understand it affects the accuracy of ft3 and ft4...I took it about 1-1,5h before the test. So I can assume that my ft3 and ft4 are even lower than the lab result.

    I am supplementing ferritin (although it is still always rather on the lower end..), b12 and vit D.

    Haven't had them tested in a while though.

    I went glutenfree for around two months. Didn't notice any effect on bloating at all and by now, I figure my swollen stomach is more due to water retention than due to diet - so hope this could go away with finding a better LT dose.

    I increased the LT to 125 two weeks ago. I don't notice any significant improvement yet, but I know it can take time and I need to be patient. In a low mood, it just seems a bit hopeless that I will feel better soon again :(

    That said, I have had periods of feeling (mentally) bad before and they always stopped and I got better again. In hindsight sometimes my TSH was low and my doctor told me to reduce. Either way, I suspect it correlates with some kind of Thyroid activity...

  • Hi Elissa your bloating could be due to low stomach acid as people with thyroid problems often have low acid in stomach causing problems with digestion.

  • Hi Ravethorpe, thank you for the suggestion.

    I had the same suspicion this year because I read about it and it made sense. So I started taking HCL with pepsin with meals - but didn't notice a difference in bloating. I went to a naturopath as well for this..gut analysis and all. Took probiotics but no result. It hardly makes a difference what I eat. It gets worse with PMS, but bloating is always there. I am now more inclined to think it isn't completely digestion related, but more like fluid retention due to not enough LT...

  • Ellissa,

    If you use the green Reply tab underneath the post you are responding to the poster will be sent an email and onsite notification to alert her you have replied.

    Taking Levothyroxine before the blood test can elevate FT4 but won't affect TSH or FT3.

    If ferritin remains low you should increase the iron dose you are taking and take it with 1,000mcg vitamin C which aids absorption.

  • Only time I ever had ferritin above 50 was when I had iron IVs. I must absorb it really badly, but will try with vit c, thanks.

  • Taking your levo before the blood draw will affect your FT4. Not the FT3 or TSH - that much is right. To get the highest possible TSH, you need to have your test early in the morning - as near to 8 am as possible - and fast over-night.

    So, you do have a falsely high FT4, there.

    Are you taking a B complex with your B12? Vit C with your iron? And vit K2 and magnesium with your vit D3? These are all very important, because these things work in groups, rather than individually.

    I don't really think you gave gluten-free a fair trial. For some people the effects are almost instantanious, but for others, it takes time. But, I'm not surprised you haven't felt any effect from your increase in levo after only two weeks.

    Always resist your doctor dosing by the TSH! That's the best way to keep the patient sick. Insist on having at least an FT4 test - FT3 if humanly possible - before agreeing to lower your dose, because you probably don't even need to. A low TSH does not automatically mean that you are over-medicated. But, doctors know so little about thyroid, we have to take control. :)

  • Not taking a B complex with B2 right now, and no Vit C with iron. So plenty to improve there.

    I have never heard of Vit K2. So taking it at the same time as VitD helps absorption I assume. I will look into it, thank you.

    I know that dosing by TSH alone is not good. Usually, when I was feeling ok (which means more stable mood wise, not as sluggish etc) it didn't cross my mind to try and test doses, optimize, play with little increases (I have only ever increased or reduced by 25 steps). I try to not focus on Hashi when I am doing ok so I thought these little niggles like bloating, tired in morning, feeling cold easily are just something I have to live with. I have had doctors tell me "your labs are in range, this can't be anything to do with the thyroid". Classic I guess.

    My doctor now is also one of the TSH obedient ones. I will have to talk to her and explain that I have symptoms and I want to be able to test my optimal dose and that I need to have my ft3 and ft4 checked, always.

    It is insanely rare to find a good doctor for Hashi (I'm in Germany) who really understands that the numbers aren't everything.

  • I think that's a world-wide problem, actually. I'm in France, and doctors here know nothing about it, either. Not even the endos. And, yes, that is a classic response from doctors! But, that's because they know nothing about symptoms. They just don't 'do' symptoms in med school.

    Taking vit K2 with D3 doesn't help with absorption of D3. But, taking D3 increases absorption of calcium from food, and the K2 makes sure it goes into the bones and teeth, and not the soft tissues, like the heart and kidneys.

  • Shame that doctors STILL don't know about tyhroid/Hashimoto - even now that there is a large "community" online, seemingly knowing more about it than they do. I'd feel the pressure to educate myself...

    Thanks for the info about K2. Will order it.

    So I have a lot of reason to believe I will feel better eventually - waiting for the increase of LT to kick in, looking after iron, Vit B etc.

    Guess feeling pessimistic is part of my symptoms right now ;)

    And just another "uninformed" question: lower back pain, feeling like it is coming from tense muscles/tendons and whatnot: also possible to do with Hashimotos / LTv dose? I don't want to blame EVERY little niggle on the thyroid - then again I know it does have an effect on so many processes in the body.

  • Hi Ellissa, Google Chris Masterjohn vitamin K2 Resource. Recently produced. He is literally the best. Especially with reference to his fat soluble vitamins research.

    Basically you need K2 mk4 and mk7. You can get mk4 from many foods but check his food resource info to ensure you are getting. Mk7 is another deal and so you need to supplement unless you eat Japanese Natto! But not all vit K2 manufacturers produce a good product. You need one that is produced by bacterial fermentation of Natto. You can obtain a little from certain cheeses such as Brie because of the specific bacteria introduced in the cheese making process. It is bacteria that make K2. I use Purenature MK7 K2 (amazon) flat pack so posts thru letterbox (British co) If you want to know more read Kate Rheaume's book 'Vitamin K2 and the Calcium Paradox - a little known vitamin that could save your life' Very informative and deals with lots of conditions related to K2 deficiency. But Chris Masterjohn's accessible free on the internet K2 Resource is excellent. Never take Vit D without K2. Never take calcium but if you really need to, you must take K2 in higher doses with it. The other fat soluble vitamins acting as co factors are also essential for K2 to act as a co factor. So make sure getting enough vitamin A and E in diet. Don't eat low fat, eat only natural fats such as butter, grass fed meat/and their fats, avocados, wild fish for omega 3 fatty acids. Farmed Salmon and other farmed fish will rob you of omega 3's not provide them. Eat coconut oil/ to cook with and support brain health. Do not use polyunsaturated oils lining the supermarket shelves. Olive oil ok as not polyunsaturated but not stable enough to cook with. When your body makes vitamin D from the sun on your skin. It synthesizes it from the cholesterol present in your skin. See Dr Stephanie Seneff's work - there are you tube video interviews.

    Oh and magnesium absolutely essential - usually deficient in. Pure cocoa is high in magnesium and also provides lots of fibre for your gut bugs. So high cocoa chocolate like green and blacks organic 70-85%. I make my morning breakfast - hot cocoa = spoonfuls butter + coconut oil teasp of cocoa powder, pour mug full of boiling water over and blend for 20 secs with hand blender to make frothy hot chocolate. I buy Bulletproof Choc powder - Amazon) You get lots of fibre, cocoa high antioxidant, magnesium, all fat soluble vitamins and coconut oil great for health of brain and mood. Not sweet but your taste will alter if you love sweet. Or bananas are high in magnesium. Before you peel a banana, wash it. Make sure organic (sold in all supermarkets now) , trim the 2 ends off. Eat the banana, Cut the peel in 2 or 3 to fit in small pan, cover in boiling water, bring to boil and simmer for a few mins, no more than 5. pour liquid into a mug and add further boiling water to enjoy as a drink. Very rich in magnesium. Banana peel is very high in magnesium much more than the fruit. See chiropractor/neurologist Dr Datis Kharrazian's book - Why is my brain not working - looks at deficiencies. You tube videos. Was also interviewed on Sean Croxton's Digestion Sessions Summit (he has also written Why is my Thyroid still not working). You tube videos/books - neurologist, Dr Daniel Amen diet protocols. Sorry! that's filled your next 5yrs :)

  • Hi LynneG, wow thanks a lot for all the recommendations and explanation. I will definitely look into it, and I'm sure there are lots of ways how good diet and supplements can benefit Hashimoto's.

  • Following up in my own thread here...

    It has been 3 weeks now since I upped the dose to LT 125. I am still not noticing that much improvement. When I made the first post, a week ago, I was still on the holiday break, where I kind of "crashed". In that I didn't do much at all during the day, slept and bummed around and felt super weak and tired. At least the last week, I have been back at work and could see that I can last through the day and are able to normally function and not break down and cry or feeling to bad etc.

    My appetite seems to be a little bit better. But all in all, I am still freezing at work most of the time, with ice cold hands, I am still super tired in the morning (a problem that has been persisting for years now though so maybe I really never had the optimal dose of LT), struggling with PMS and most of all, my mood is still low. I am still so irritable and still get so sad sometimes. Still feel like I could cry at the drop of a hat.

    I have bought Vit K and take it with Vit D now (thanks for the advice), and I also take a higher dose of ferritin now, as well as a VitB complex with the VitB12.

    I am just so impatient because I want to feel how I slowly come out the other end of this bad phase. And I am worried that maybe it's not related to the thyroid - which is kind of silly since I think I do have a lot of textbook symptoms.

    But is it a bad sign that I don't feel much better after 3 weeks of upping the dose?

    (I'd like to try to go higher than 125LT as a trial anyway, since even when I felt mentally ok, I always had symptoms like tiredness, feeling cold, bloating and PMS).

    Thanks for reading :)

  • And following up here again!

    I found a new very capable doctor, a thyroid expert who knows all the facets and doesn't just use TSH levels, but listens to how I am feeling. She told me my symptoms were due to being underdosed and I have increased my doses for another 25 LT 18 days ago. I am taking 150 LT now and I so hope that this dose will finally rid me of first of all my strong symptoms now (moodwise etc) and also of those persistent symptoms I have had for years.

    But what can I say, I stil do not notice much improvement. Sometimes I thought my hands are warmer, or there were days when I am not as tearful, but all in all, not an "aha effect" or a clear feeling that I am really getting better.

    I know patience and all...My doctor also said not to worry, it can still get better. But I have been feeling bad now for so long and I am getting scared that maybe Hashi has nothing to do with it, or maybe I will never find a good dose that makes me feel good on a physical and mental level.

    Could it be that my body has been mildly underdose for so long that it takes long now to notice the increase?

    I am still loading up on VitB12, Vit D, Vit K, Vit B Complex, Iron, Selen, Magnesium...

    Any feedback or encouragement is appreciated ;)

    Thanks!

  • Ellissa,

    It is easy to miss updates because they are only seen in Newsfeed which is very fast moving. It's better to write a new post with your update.

    It takes 7-10 days for an increase to be absorbed so it is very early days to feel any improvement. You won't feel the full impact of the dose increase for six weeks and symptoms often lag behind good biochemistry by several months. You should be feeling some gradual improvement from raising Levothyroxine dose and correcting vitamin and mineral deficiencies but it is a slow process.

  • Thank you Clutter. I didn't want to "spam" and make a new post, but thanks for the heads up about the newsfeed. Would you recommend posting this again now, as a new thread?

    And thank you for your encouraging words. I am just getting so worried because it feels like I am in this bad phase for forever. And I always question myself that maybe it has nothing to do with the Hashi and I am just a negative depressed person now.

    I am doing everything I can, living my life normally.. going to work, meeting friends, exercising, doing yoga, and I am moving house so I have lots to organise. But I just don't feel like myself in good times. I miss feeling balanced and at ease, optimistic and enjoying things.

    I hope that I will once and for all finally figure out how to find a good LT dose for me. I haven't cared about it enough all these years and always blamed other things for my little nagging issues.

  • Ellissa,

    Feel free to write a new post with your update.

    If you haven't yet gone gluten-free I recommend you re-read my post and links above as it may help reduce Hashi flares and symptoms and may improve your bloating.

  • Thanks again Clutter for your quick replies!

    I know the recommendations for a gluten free diet. I have tried it, granted not 3 months, but two and noticed no difference at all. It stressed me out since I am traveling a lot, and eating out a lot ;)

    I know these are excuses, but I am still hoping that once my body gets the level of LT it needs, symptoms will ressolve.

    My biggest issue right now is my mood and my doubts about my own mental stability and the thought that maybe this is just the new sad me :(

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