Help Please 8 days off Levo Feel Awful Weak Fai... - Thyroid UK

Thyroid UK

115,728 members134,229 posts

Help Please 8 days off Levo Feel Awful Weak Faint No Energy Terrible Headache ?

Kazbe
Kazbe

Hi I’m sorry I’m back again 8 days off Levo and feel dreadful ! I was on 75mcg Levo levels were all good T3 still low palps headache bone pain just felt awful !

I swapped over to my Nature Throid and I’ve felt myself gradually decline by the day on one grain for 8 days my body feels so fatigue it’s 7pm I’m back I my Pajamas feeling terrible my head feels odd almost like dizzy faint so fatigue I can only just walk to the kitchen I just want to sleep !

I’ve heard that Nature Throid May have changed in strength and formulation and it certainly feels like it I’ve tried my one grain and just incase they were suspect I’ve halved my 2 grains ! It’s made no difference I feel like I haven’t had anything

My temp is 36.8 so that’s good but just feel so weak !

Shall I go back on Levo until I see specialist in 2 weeks time or up to 1 1/2 grains I’ve had 1 1/4 today but it’s made no difference it’s almost like as soon as the T4 leaves my body I get the most

awful side effects that my body can not cope with ?

Any advice or suggestions would be appreciated

Very much

Thankyou

Kazbe x

32 Replies

Kazbe have u tried to check ur adrenals?

Kazbe
Kazbe in reply to Ari3

I’ve taken vitamin c and iron and all my minerals etc reduced my stress levels can’t sleep as I’m suffering with insomnia! I’m confirming tomorrow then within a few weeks I shall be going down to London to see someone who addresses everything thank goodness I can’t carry on like this I feel so ill .

My Endo said Adrenals fine Cortisol high but not too high so what can I do ?

Ari3
Ari3 in reply to Kazbe

Poor you OMG how long have u been like this Kazbe :-( a year two years? U are the same as me Iam struggling so much but bit better on ndt and t3 combination -have u tried that? Yes u better wait to see that person who probably will help u to sort u out as there are so many things involved....

Kazbe
Kazbe in reply to Ari3

I thought about adding 25mcg Levo to my NDT because on T4 levels look good but I feel awful! On NDT levels drop quickly I don’t think I absorb it properly then I feel dreadful and back to the dreaded Levo again ! I think to be on the safe side il go back on Levo 50/75 and let the Functional Naturopathic Dr help me sort all this out because it’s not just medication I want t address the root cause and look at the whole picture my gut, diet, supplements, lifestyle and NDT or whatever they suggest 😀 il keep you posted as soon as I’ve been il pm you all the details hopefully so you or anyone else can try hopefully it will be successful I’m praying because like many in here I feel so poorly I just want to get my old life back because I feel so tired and very low x

Ari3
Ari3 in reply to Kazbe

Same here Kazbe do what u think is right for u at current situation and wait for ur appoitment .is no point to load ur system with something which makes u awful. Yes you should address ur root causes.well I know I have H Phylori gut Dysbiosis (bacterial imbalance) SIBO and possibly candida as well.i have one pathogenical bacteria which is very high in my body. There are couple of vitamin deficiencies I need to address and metal toxicity...so it’s so many things .i started to do AIP diet as I have Hashimotos and it’s helping to clean my skin and feel more energetic

greygoose
greygoose in reply to Kazbe

I don’t think I absorb it properly

Do you take your NDT on an empty stomach waiting at least and hour to eat or drink? Do you take any other supplements or medication with your NDT?

Kazbe
Kazbe in reply to greygoose

Hi Greygoose

No I take my NDT at 7-8 am with glass of water and I leave it at least one hour then I take acidophilus capsule it’s sometimes 2hrs before I eat .

I take my supplements in the morning and later in the day take iron so I really don’t know what I’m doing wrong ?

Could it be The acidophilus? I’m not sure but I certainly think as some other forum members have had problems over the last few months with the new formulation of nature Throid ! So I’m thinking of trying another NDT to see if I do do better or if it’s just that I’m hashis and NDT just doesn’t suit me ?

I feel very confused and disappointed with NDT experience as my T4 drops to 9(12-22) and my T3 just nudged up to 4.7 from 4.5 after 4 months on Nature Throid and my TSH shout up to 5 !

I’m wondering what is happening I don’t seem to be able to get right

Thanks for replying I appreciate the great advice

Kazbe 😀

greygoose
greygoose in reply to Kazbe

I don't know if it's the acidophilus but you could try leaving it a bit longer before taking it, at least two hours.

But, of course, it could very well be that NDT doesn't suit you due to the Hashi's. I had the same problem.

Kazbe
Kazbe in reply to greygoose

Thankyou for your advice Greygoose

I don’t think I can continue with the nature Throid I feel like I’m getting more ill so do you think it’s wise to go back to Levo whilst awaiting my appointment? When I see the functional medicine / nutritionist and after tests see what they advise as I keep going from Levo to NDT and getting nowhere so perhaps it’s time try either another NDT or T4/T3 combination hopefully il finally find what suits me so I can get well 😀

Thankyou grey goose I appreciate your reply and reassurance

Kazbe 😀

greygoose
greygoose in reply to Kazbe

Depends when your appointment is. It's really not good to keep chopping and changing - especially not good going from NDT to levo because you're depriving your body of the T3. It might be a good idea to wait until you've had your tests to see exactly what your levels are before changing anything. And, in the meantime, if you feel you're not absorbing your NDT, try taking some vit C with it to help absorption.

However, do you really trust that this functional medicine/nutritionist knows what s/he is doing? They're notorious for not knowing much about thyroid and for having some pretty weird ideas about treatment.

Kazbe
Kazbe in reply to greygoose

I have received lists of nhs and private Drs and practitioners from thyroid uk I know they don’t recommend but I’ve researched and tried so hard to decide whether to go to a dr or Endo or functional nutritionist/ naturopathic and it’s mind boggling to decide what to do.

I’ve seen 3 Endo all they want to do is prescribe T4 I’ve seen Dr P he recommended Adrenal support then glandulars which didn’t help me.

I am now hoping that this particular person down in London will do tests find root cause of my Autoimmune Hashimotos and hopefully if I start addressing this my thyroid condition will improve .

It’s costing £250 just for consultation so I really hope and pray I am doing the

Right thing here .

Don’t worry I wouldn’t be subjecting to any harsh liver cleanses and potions !

Thankyou for pointing these things out

Though .

Kazbe 😀

greygoose
greygoose in reply to Kazbe

I am now hoping that this particular person down in London will do tests find root cause of my Autoimmune Hashimotos and hopefully if I start addressing this my thyroid condition will improve .

I'm not sure it will. And, personally, I don't think it's worth the time, energy and money to try. Even if you find the root cause - which is extremely doubtful - there's no guarantee that you'll be able to reverse it and stop the autoimmunity. And, even if you did, you wouldn't be able to repair that damage that has already been done to your thyroid, so you would still need to take thyroid hormone replacement. Myself, I would put my money and energy into finding the right dose of the right thyroid hormone replacement to make me well. But, that's just me. :)

l

Olivua
Olivua in reply to Kazbe

I cannot take any pro. . Pre biotics. . As I stiffen up. . Get all Achey. And feel dreadful. .Got reactive arthritis from them . And then chronic uti. Everytime I took them. . . . Too much pressure on the kidneys to rid the bacteria. . Ended up ☝️ n hospital for 5 weeks with kidney infection gone through me. Frightening. And the urologist agreed about biotics. . If healthy mixed diet. A bit of everything. Ur gut will be fine. . I have really felt the improvement since quitting them. Just a thought. . . . STOP Taking them and see. Currently immune system under enough strain dealing with thyroid. . . . Am ón eltroxin And it's good. . Begining To pick up and feel better. The bloat has gone from face. . Ankles deflating. . Bit Am still a lil fat.!!! . Like a Christmas 🎄 Robin. But happy fat!! Xxx

Kazbe
Kazbe in reply to Olivua

Really I didn’t know that about probiotics I will definitely miss them and see how I feel ! Aww bless you I’m sure your not fat !! I love little Robins too !!! 😀take care xxx

Aww good I’m glad you sound like you’ve found someone who has found most of Hashimotos Problems lie with gut issues or inflammation in the body ! Metal toxity is something I’m keen to address as I do have amalgam fillings in my mouth ! Keep up the good work and look after yourself .

Kazbe x

I switched from levothyroxine to NDT and found after a week I needed 1.5 grains, then 2 after 2 weeks. It’s faster than recommended but if you’re feeling weak you must otherwise you could really damage your system because of the negative feedback loop. Persevere honestly just up your dose and you’ll feel better. Good luck x

This is a normal reaction when changing from Levo to a natural thyroid medication. It should not be just done cold turkey or you will get those symptoms, low energy, headache, listless, no concentration. This happened to me, so I know. I looked up some STTM info and searched fb, then I found a woman who had the same symptoms. She advised to gradually change over, like one NDt for a week whilst still taking levo, maybe, then 2 ie say mon and thur ans so on. Also, another thing you can try, try halving the dose ie half morning and half at midday. This evens out the T3 hit so you do not get palpitations. The docs should know this but they don’t seem to. Good luck. I will look up more for you and post later.

Kazbe
Kazbe in reply to Mollie2

Thankyou Mollie2

I did wonder whether to do that but wasn’t sure if it was ok but I have decided to go back on Levo 50/75 and keep that up for a week and when I go and see this specialist and have further tests I’m hoping to revert back to NDT .

I’m wondering if I don’t convert very well whether a bit of T3 might be the answer but il wait and see .

I’m so exhausted I feel like I could sleep for a week 😩

Take Care

Kazbe x

It sounds as though when you were taking Levo you weren't on a high enough dose so now you havenstopped and adding in NDT youbhavent eboufh stored to last you over the changeover. Have you any reseultsxwhen you were taking Levo you can post along with the ranges? If that's the case you may be able to increase a little faster.

Could be something in here...

stopthethyroidmadness.com/m...

Hi again Kazbe, I have just re read my first post to you and realised it may be confusing. I meant to wean over to NDT eg one day a week, then two days a week etc until you are taking it every day, BUT do not take the Levo as well on the same days as you take the NDT. Sorry for being unclear and good luck again.

Looking back over your posts you seem to have a conversion problem so really that needed addressing. That may have meant you would have been ok with Levo. The only problem now is that you can only tell this if you are taking Levo, you can't tell if taking any form of T3. If this isn't addressed first then you will struggle to raise your dose of NDT.

To address conversion issues then you need optimal levels of Vit D, B12, folate and ferritin and on Levo only. It took me 5 months to get my levels up though this varies depending how depleted you are. Once I had done this I had no problems going over to NDT. previously I was taking 120/125 Levo and I am now on 1.75 NDT. you shouldn't compare as different brands etc but just as a guide.

Kazbe
Kazbe in reply to silverfox7

Thankyou Silverfox 7

I agree since May 2017 I have been on Levo and my T3 level was 4.2 and all this time it has only gone up to 4.7 so something’s not right .

It’s strange because when I was first diagnosed my T4 was 11.2 (12-22) my T3 was 5.3 (3.5-6.8) so my T3 was higher on no medication at all but I felt ghastly I felt so fatigued !

I’m on higher strength Vit d b12 iron and 1000 Vit c so hopefully my levels should pick up and I’m on 50mcg Levo this morning il do 75mcg tomorrow as I’ve had 9 days break thought I’d better increase gradually again .

Thanks Again For the Advice and support it helps so much knowing

I have got such lovely people helping

Me through this .

Kazbe 😀

GKeith
GKeith in reply to Kazbe

Not to break into a conversation done 2 days ago but I took 75 mcg Levo and felt terrible; it even caused me to switch to 5 mcg of T3-only. I then asked my endo, who kept busting my chops about taking my T4, about 50 mcg because I had read that it was the cleanest levo, a white pill with little or no additives or fillers and he prescribed it for me. I felt much better immediately. Am now on 15mcg of T3, twice a day and the 50 mcg of Levo once a day and feel very close, if not there, to my optimum dose. If I were you (of course I'm not & only you know how you feel) I would either drop the 75 mcg and take only the 50 to see what happens or drop the T4 altogether. Doesn't NDT already contain the right doses of all your hormonal needs? I've always gone by how I feel and if it makes me dizzy, or makes me feel sick within the second or third dose try, I don't take it. But, as I said, I'm not you, so do as you "feel" best and may peace be upon you and the grace of god go with you.

Thankyou reallyfedup123

I’ve started drinking bottled water I didn’t know about the non stick cookware though il get a different tray !

😀 Boron I’ve never heard of that il research that and see if I do have Candida il remember that .

Great tips and info

Thanks Again

Kazbe 😀

Just FYI: a non-prescription NDT product is Thyrovanz. There's a facebook group. Search for who sells in your country. Its bovine not porcine, so dose has to be trialed up / down. IE up till night time heart palps, then back off.... true that is extreme but practical.

Ditch being slave to waiting for your health care system to reluctantly help you, find where you can buy your own blood tests. Often the out of pocket for buy-yourself is cheaper then in-system co-pays.

Now you are free to solve your health problems without queuing or begging. Yes same rotten under-diagnosis / mis-treating hypo thyroid here in the states too. ;(

I found a really old Endocrynolgist who isn't beholden to bad standard of care guidlines and he gives me all the Naturoid / levo, BHRP hormones I ask for,, and justify with self bought blood tests I just bring in myself to 6 mo office visits... Maybe you can find the older folks who will be more responsive?

Your plan B is to self test, and self experiment with: iodine + thyrovanz + cleaning up your diet of goitrogens, bad oils, gluten etc that maybe the root of your autoimune systems (often is diet/lifestyle triggered).

Back ground: amazon.com/Iodine-Crisis-Wh...

On the extreme autoimune corrective path is to follow Dr Wahls anti-MS diet book:

google.com/search?client=fi...

Best of luck all.

Kazbe
Kazbe in reply to curt504a

Thankyou curt504a

That’s very informative stuff and very true I have been getting my own bloods done but so far only tried Nature Throid which hasn’t worked for me .

I have thought about trying thyro gold which I’ve read a lot of people have had success this is bovine rather than porcine so I think it’s all trial and error .

I will research Thyrovanz and look at the Facebook group too.

I have seen Dr P here in the uk he is old school with a tremendous amount of knowledge but he recommends Adrenavive for Adrenals and Metavive Glandulars For Thyroid but they really didn’t suit me at all.

Thankyou for replying and keep well

Kazbe 😀

Hi. I have been underactive for 25 years. I took Levo untill three years ago as I was always told there wasn't any alternative. I then started NDT, but my T3 went too high, and I read that too high doses of NDT tires the adrenals. So, I now take 100mcg of Levo at night, and 1to 1 1/2 grains in the morning of NDT. I pay to be tested every three months to try to keep a balance. I don't feel great everyday, but better than before. I don't think any medication will replace a healthy thyroid unfortunately.

So long story, but was diagnosed with hashimotos last year, did a ton of research and figure I’ve been hypothyroid since infancy. I live in Saskatchewan Canada and travelled to Alberta to see a medical doctor who also happens to have hashimotos. He told me to take 8 drops of lugols iodine, selenium and switch to NDT. I finally got my iodine levels checked last month and it was way high. I stopped taking iodine cold turkey and in five days all my hypo symptoms returned. I couldn’t take it and went back to gp to Beg to let me back on iodine. Crying, of course, darn hormones lol Only a drop of two this time. All of my thyroid blood work was “within range”. (I don’t know what a good range is, each province, country seems to have different ranges.) And boom, I feel great again. Did research on iodine deficiency.... any thoughts, because I swear by it now.

Kazbe
Kazbe in reply to Simon32

Wow what a story I’m glad you are feeling so much better though ! You do have to be careful with iodine but apparently it’s a deficiency that can caused an under active thyroid ! I live in Derbyshire and years and years ago many people suffered with thyroid problems in this area and was actually called “Derbyshire Neck” if I’m correct it was something to do with a lack of iodine !!!! It makes you wonder if only it is just that simple 😀 I wish you good health and do keep me posted on how you are doing .

Kazbe 😀

Simon32
Simon32 in reply to Kazbe

My gp is from India and said he saw many people with thyroid goiters and cancer. So he was afraid if I take to much Iodine this will happen. I’m not sure who or what to believe anymore so I follow my heart and listen to my body. Fingers crossed ☺️

You may also like...