Hashimoto's - med decrease and feeling awful - Thyroid UK

Thyroid UK

111,287 members129,385 posts

Hashimoto's - med decrease and feeling awful

Fmljkl
Fmljkl

Hi, I am 35yo female with Hashimoto’s thyroiditis. I got labs done last week and my doc said I'm border line hyper. I think I most definitely am b/c I was STARVING every 45 minutes and eating constantly. I ended up gaining weight and I just wasn’t feeling good about myself. My lab results were:

TSH: 0.19 (.45-4.5)

T4: 1.3 (0.82-1.77)

T3: 3.3 (2-4.4)

Before labs were taken, I was taking 88mcg of Tirosint (liquid t4) at 10pm. I also took 5mcg of liothyronine (t3) at 6:30am and 2.5mcg at 1pm. Due to hyper symptoms, doc suggested I drop to 2.5mcg of liothyronine in the morning and afternoon. I dropped the dose a week ago and have been experiencing excruciating muscle pain, cold hands and feet, exhaustion and depression.

Is this normal? How long should I give this a test run? I feel terrible. I really have no idea what to do. I felt better on the old dose than I do now - but need help. Should I go back to old dose tomorrow?

Is this more than Hashimoto’s? Is this pituitary or blood sugar related? PLEASE HELP! ADVICE NEEDED!

59 Replies
oldestnewest

You don't appear to be over medicated on those test results. Have you had vitamin levels tested? If so, then post those results. If not then get them done, B12, folate, ferritin and vitamin D. If any of those are low, even when in range then we can feel unwell.

Fmljkl
Fmljkl in reply to Nanaedake

The only thing that made me feel hyper was my insane appetite. I didn’t get vitamins done, only CBC and thyroid labs. CBC was normal. Think it’s OK to go back to old dose and try to get a grip on appetite and weight gain? I seriously feel like a truck hit me with the lowered t3 dose

vocalEK
vocalEK in reply to Fmljkl

Seems to me that an insane appetite would be a hypo symptom. That could be why we hypos gain weight so easily.

I think what you needed was an increase in T3, not a reduction. Your doctor is an ass if he thinks those labs are 'hyper'. He's only looking at the TSH, but even then, it's hardly low enough to be 'hyper' - and you're only 'hyper' if your FT3 is well over-range. Yours is only about mid-range.

I think you really should go back to your old dose tomorrow. :)

Fmljkl
Fmljkl in reply to greygoose

Hey Greygoose, love your name ;) if I was in normal range, what would explain the crazy hunger? Honestly, I feel so out of it today I'm def going back to old dose tomorrow...I've been in bed all day feeling crap. BUT I am worried about the extra weight I picked up from being hungry all the time. What would explain that? Should I see a nutritionist? I work out a lot to manage my brain but that hunger was out of nowhere with normal workouts.

greygoose
greygoose in reply to Fmljkl

Could be you work out too much. Not only would that make you hungry, but would deplete your T3. If you're hungry, you need to eat. Hunger is your body's way of telling you it needs more nutrients. And, whatever you do, don't go on a low-calorie diet, that is bad for hypos.

I don't think I'd see a nutritionist, if I were you. I don't have great faith in their knowledge of nutrition. What sort of diet do you eat? Do you get enough good fats? It's the fats that stop the hunger. Eat good clean food, and enough of it. Starving yourself will just make things worse. I doubt if the weight-gain is fat, anyway. It's more likely to be water.

Have you had your nutrients tested: vit D, vit B12, folate, ferritin? If not, it would be a good idea to ask your doctor to test them. :)

Fmljkl
Fmljkl in reply to greygoose

This is dumb but I started working out more to be away from the kitchen and not eat.

I started counting calories (burning 2500 and eating 2000) and still gained weight. I dunno if it’s thyroid related.

I eat clean - lots of good fats and I’m gluten free. Just hungry all the time which is not normal for me.

I’ll go back to old dose and make appt to doc and get other labs tested. Should I be taking an adrenal supplement or pituitary supplement too?

greygoose
greygoose in reply to Fmljkl

I don't think pituitary supplements exist. In any case, I doubt it has anything to do with your pituitary - why do you think it has?

As for adrenals, maybe you should get them tested, too.

If your weight gain is water-retention, doesn't matter how many calories you eat, or don't eat, it won't have any effect. But, it will be down to your thyroid condition, yes. Weight-gain is a hypo symptom.

Fmljkl
Fmljkl in reply to greygoose

I googled low TSH and normal T3 and T4 and pituitary issue popped up so wasn’t sure I needed to look into that.

I just don’t understand where the hunger is coming from! I was seriously having to eat every 45 minutes and I gained fluffy fat so def not muscle.

Should I monitor blood sugar?

greygoose
greygoose in reply to Fmljkl

Yes, but they're talking about people who aren't on thyroid hormone replacement. Once you start taking the pills, you have to interpret your labs in a different way.

I didn't say anything about muscle, I said water.

I don't know if you should monitor your blood sugar. Hypos don't normally do that.

Fmljkl
Fmljkl in reply to greygoose

I emailed my doc for additional tests. I went back to old dosing and feel so much better. How long should I wait between my am and pm t3 doses? 6 hours or more like 7-8???

greygoose
greygoose in reply to Fmljkl

There is no fixed time. Whatever suits you best. You may have to experiment a bit to find out when's the best time to take it for you. Myself, I take my whole dose in one go. I didn't find splitting it helped at all.

SewinMin
SewinMin in reply to Fmljkl

For what it is worth, I think most of the calorie calculators are fairly worthless. :) I say this because a dietitian measured my resting metabolic rate and it was *way* lower than (a) average and (b) the calculators say.

Fmljkl
Fmljkl in reply to SewinMin

Yeah I had mine tested a few years ago and don’t really think they’re accurate. I did the early morning breath tests At the time, mine came back high metabolism but I dunno if it’s changed since then.

greygoose
greygoose in reply to SewinMin

If you're hypo then you're bound to have a low metabolic rate. Forget calories, just eat what you need.

In my experience i realized the drugs are whats making me very sick, They cause major blood sugar problems! u have i bet insulin resistance problems and adrenal fatugue. If your adrenals are sick then it followa the thyroid. u need to change your diet.I eat lots of protein huge amounts of greens . Avoid all glutens and sugar! Make sure u take lots of vitamins B s and Vitamin D s and Vitamin Cs but concentrate on red meat. It has received such a bad wrap but in the cave man days ,that what our bodies are made to eat.u probably have a leaky gut.its all what u eat i was on thyroid meds for 30 yrs. They ruined my life.its all a lie. Its about your diet, no sugar and no glutens u need to heal your body. STRESS IS A KILLER. U need to breath deeply take walks and de stress your mind is part of the healing. I know it sounds simple but believe me i was u. Your body doesnt know what to do with all that poison u are taking. Dont ruin your young years taking that crap. It that makes it worse! Try to follow keto diet the thyroid loves all the protein. Hope u feel better. Those thyroid tests are all b.s.

Hidden
Hidden in reply to Lcornett55

Excuse me, but if someone has thyroid problems any sort of weight loss diet is likely to make things worse! And thyroid tablets are NOT dangerous drugs but replacement for essential hormones that your body needs in order to live. The problems that people get with thyroid tablets are usually to do with wrong dosage or sensitivity to the fillers in the tablets

Yes, eat healthily, and vitamin and mineral supplements are good, as most people with thyroid issues have problems absorbing. But no fad diets. Last year I tried fasting from solid foods for several days, soups and nourishing drinks only. I felt fine, but gradually got more and more lethargic. It took some time to get back to normal.

MjM2015
MjM2015 in reply to Hidden

I think she was talking about the fillers in the hormone pills. They are toxic as I have found out for myself and can now only take one brand fingers crossed it stays this way. I'm allergic to alot of the fillers and have had the tests.

Hidden
Hidden in reply to MjM2015

The problem is of course that it's impossible to get an accurate dose without fillers. But there are people who claim you can recover without taking thyroid replacement at all. Which is only true in very rare cases

MjM2015
MjM2015 in reply to Lcornett55

I second this

... as of few weeks ago I've been finding out alot about diet and our bodies... I've started on iodine and selenium drops with keto diet and making my own Keifer to heal my gut due to alot of antibiotic overuse and the damage it's done and killed off all my good bacteria.

I 100 per cent agree with you healthy diet all the way thyroid drugs are rubbish made me critically ill took years of my life away im on a small dose of T3 only now, and do ok thyroid Tests are pants, diet all the way for me (◍•ᴗ•◍)❤we shouldn't be feeling iller on medication like a lot of people do I didn't feel as I'll of medication more research needs to be done to improve the dreadful side affects some people suffer from taking thyroxin one size does not fit all same as any drug(◍•ᴗ•◍)❤

Hidden
Hidden in reply to Lunasaysso

See my comment to Lcornett55. Thyroid replacement is replacement for the natural hormone that is lacking.

Yes, diet can help, especially supplements of low vitamins and minerals caused by malabsorption, but it doesn't cure hypothyroidism. If thyroid tablets make you ill there may have been a problem with the dosage or the fillers in the tablets (thyroid hormones are needed in such tiny amounts they have to mix in other things to make the right dose. Or, as you seem to have found, you need T3 only.

Yes, hypothyroidism puts a strain on the adrenals which need support too. But the right dose of thyroid replacement usually helps the adrenals to recover.

Fmljkl
Fmljkl in reply to Hidden

I agree! I remember life without thyroid meds and I was miserable. My Hashimoto is just hard to manage with changing doses throughout the years.

Jeppy
Jeppy in reply to Hidden

For me though I couldn't tolerate levo at all until I'd worked on adrenals

Dr P says 'for some' it's dangerous to take thyroid meds if adrenals very insufficient and I know there is mixed feeling with this

Hidden
Hidden in reply to Jeppy

It's a bit of a catch-22 in that case isn't it. The adrenals are failing because of trying to compensate for the low thyroid, but they have to be stronger before thyroid replacement can work properly. I think it's to do with the sudden surge of energy (with T3 presumably) which the adrenals can't handle

Jeppy
Jeppy in reply to Hidden

Yes

Why is ît a sudden surge ?

Hidden
Hidden in reply to Jeppy

I'm no expert, there are others much more knowledgeable than me. But this is how I think it works:

Both the thyroid and the adrenals work together to help control metabolism, that provides energy for life. The adrenals produce adrenaline (the "Fight or flight" hormone), and steroids ("stress hormones") such as cortisol.

Too little thyroid hormone means the adrenals have to try and compensate by increasing their output of steroids, and perhaps adrenaline (not sure of that part). Adding even a tiny amount of thyroid hormone is likely to unbalance the whole system if the adrenals are already struggling.

Even a hypothyroid person with healthy adrenals can't cope with a large increase of thyroid hormone all at once. That is why the usual starter dose of thyroxine is only 50mcg, or 25 in an older person or someone with heart problems. You then increase in 25mcg increments every 6 weeks or so until (hopefully) you reach the right dose for you. The only exception is normally for someone who has had their thyroid removed, who need a bigger dose, or someone who is extremely hypothyroid.

An illustration might be a see-saw. Unless the two people are well balanced, the larger person has to move nearer the middle to restore balance because the smaller one can't weigh their end down enough. If someone else suddenly dumps themselves on the end with the smaller one, the larger one has no time to adjust and might even fall off as he suddenly goes up in the air, while the two at the other end will go down with a bump.

Jeppy
Jeppy in reply to Hidden

Thanking you for this. It makes a lot of sense

Yes I could only manage 25 levo. After working in adrenals I am at 75

Now I've got bio identical HRT as concern about osteopenia

I'm scared as not much better

Il need to check vitamins, work more on adrenals and gut

But I'm confused why urine adrenal test is ok but Dr P put me onto Adrenavive 11 after doing his balancing tests

Hidden
Hidden in reply to Jeppy

I know very little about his methods, but not even Dr P is infallible!

It seems that Adrenavive is a mixture of nutrients that help support adrenal function. So maybe, as you are able to tolerate more thyroxine you don't need it so much. an improvement in thyroid hormone would help you to absorb nutrients better, as well as improve your adrenal function (the adrenals - and even the thyroid glands themselves need thyroxine too, just as the rest of the body does). 75mcg is still quite a small dose of thyroxine, although apparently enough for some people.

Jeppy
Jeppy in reply to Hidden

Thankyòu. Yes as tsh is still nearly 4 I don't take enough, I sunk into a deep hole,when I took 100 and couldn't get off settee, I know I'm sensitive as it was immediate

I tried metavive and maybe I didn't take enough then reverted to levo as read you should go this way first The but is, my t4 wasn't bad naturally, tsh high, and t3 low range, so it appears I don't convert too well🤷‍♀️

vocalEK
vocalEK in reply to Jeppy

Adequate Vitamin D3 along with Vitamin K2 MK-7 will keep your bones strong. Here's a calculator grassrootshealth.net/projec...

Could be something else besides the low T-shirts and T4. I am the same. You could be anaemia or lacking in vitB12 or as us already suggested low ferritin levels- that’s iron stores -

Ask for a full blood count. Faced in similar circumstances l upped my meds half way up again and felt better

Blot
Blot in reply to Blot

TSH not tee shirts. Dreadful autocorrect on my phone ...lol

Teras
Teras in reply to Blot

Lol!

tj61
tj61 in reply to Blot

made me laugh :)

Hidden
Hidden in reply to Blot

If I try to write the name Jo, the autocorrect insists on saying "NO" :-D

Blot
Blot in reply to Hidden

And it keeps doing it!!!!!

E_lizab8
E_lizab8 in reply to Hidden

Switch off the autocorrect😄

vocalEK
vocalEK in reply to Blot

Welcome to the club. ;-)

My labs are similar and I am always starving lately its awful I figured it's from peri menopause but idk did u get your reverse t3 tested? My reverse t3 is ok but these others are similar to yours and I thought this is HYPO not hyper?? Your free t3 and free t4 should be at the top of range is what I was taught and my dr just increased my ndt to see if it helps I also take 5mg of t3 twice a day. I love all these comments about diet but I am barely surviving and cant afford to change my bad diet it costs way too much and healthy food doesnt keep me full at all.

catrich
catrich in reply to Krisinua

Bad diets kill. Eventually. Or sooner, even. And the cost of bad diets we see in the shape of medical bills, vitamin supplements and prescription charges. And all the rest. It really IS cheaper to eat a clean, simple diet. Vegetables, for example, cost very little. It is certainly understandable that not everyone can afford some of the organic, grass-fed meat and wild fish products that many Paleo-style diets promote. Or even find! But I sincerely believe that if we can afford a bad diet, we can certainly afford a simple good diet, also.

Blot
Blot in reply to catrich

But l found with Hashimoto problem l wasn’t digesting all those lovely nutrients in organic produce. Solution - l tried supplementing with digestive enzymes and additional HCL It helped a lot. Paid attention to gut problem too. More stable now.

Fmljkl
Fmljkl in reply to Blot

Which digestive enzyme do you use?

Blot
Blot in reply to Fmljkl

Try one that isn’t too concentrated/mild at first. That way it is better. You might only need a little assistance. You can always upt the amount. Also an HCL supplement is often helpful for the digestion of protein. I found both gave immense relief from bloating and general gut problems. If this doesn’t sort it out then other problems in the gut itself like overgrowth of unfriendly bacteria could be to blame.

Hidden
Hidden in reply to catrich

Im a vegetarian that doesnt eat fish or eggs, what foods are best to eat? What is classed as good fats? What is clean eating? I crave salty crisps alot and pepsi max which i know are bad for me.

catrich
catrich in reply to Hidden

Your post a couple of months back about going gluten /soy free has some good advice on diets from fruitandnutcase and marz.

Good fats = butter (organic); coconut oil; ghee. Olive oil. Avocado. Etc. Tons of advice on clean eating on the internet. Try Chris Kesser, for example.

You have suggested that you have big problems with food intolerances, etc. It may be that you need to see a nutritionist again and try to slowly build up your body's ability to deal with a balanced diet - and absorb nutrients from a range of foods. It will be restricted at first, I'm sure. Salty crisps and pepsi max are no substitute for food. But you know that. 😉

For what it's worth, I am not gluten intolerant and am not a coeliac. I do, however, have big problems with a range of cereals - wheat and barley in particular. When I do not eat them, the difference is HUGE. There are many people with similar experiences on this Forum.

Hidden
Hidden in reply to catrich

Thank you for your advice

Hidden
Hidden in reply to Krisinua

Where do you all find doctors to provide T3?

Krisinua
Krisinua in reply to Hidden

I got referred to one by a Facebook group dr does phone visits

Ktuck0
Ktuck0 in reply to Hidden

Thyroid U.K. website have a list of them that’s where I got mine from

Blot
Blot in reply to Hidden

France

He made a bad change. Call him and suggest he let you add some T4 to compensate for the reduced dose. Good luck.

I used to on about double the dose of levothyroxine (T4) and I lost my appetite and felt tired when my T4 was very high. I do think symptoms can be weird and symptoms of hyper snd hypo can be interchangeable.

Blot
Blot in reply to JaneyJaney

Sometimes we have to adjust doses according to how well we feel

This would be rare, but an insulinoma could cause such low blood sugar that you need to eat frequently resulting in rapid weight gain. Screening labs could show a low blood sugar level, simultaneous with a high insulin level. Probably more commonly with hypothyroidism, if you have inadequate free T3, your pituitary gland could have difficulty making enough ACTH. Screening tests could include morning cortisol and ACTH. Lack of normal ACTH response in the adrenals can lead to low cortisol and aldosterone, and if blood sugar and blood pressure went low enough, the adrenals could compensate by releasing high levels of cortisol and aldosterone, causing a tendency to diabetes and high blood pressure. Another lab to consider would be HgbA1C to see what your average sugars are. Do you measure your blood pressure and pulse periodically? Low aldosterone tends to cause low blood pressure, orthostatic hypotension, and salt cravings. Hope this will give your doctor some ideas. Isn't the body complicated?!

Go back to your doctor and double check, being in pain and suffering depression so quickly doesn’t sound right to me x

I’m almost ready to give up trying to feel energetic! I’m just hoping for normal!! 😄

Adding T3 to my T4 made me feel very down so I came off the T3. Was disappointed as was hoping T3 would be the answer. Hope you get well soon and remember you're not alone, it's a complicated maze we are all trying to navigate through!

L Glutamine could quell those dreadful cravings to eat. Give it a try

Blot

You may also like...