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Thyroid UK
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Newly diagnosed and struggling

I was started on levo on Wednesday - after showing positive for thyroid antibodies.

L'm on a low very low dose and would have to say taht I didn't feel particularly symptomatic recently (I also have B12 absorption problems which are well under control)

I noticed feeling dizzy after the first tablet.

Yesterday afternoon I found myself falling asleep over computer at work.

This morning I felt so tired after the tablet that I just wanted to cry and that hasn't gone away and I have been shedding a few tears.

I have a cough so have checked my blood oxygen saturation and that is okay. My temperature doesn't seem elevated (but then I'm pretty naff at taking my own temperature).

I was taking kelp until I heard that I had antibodies so knew I was going to be starting on levo - and that had resolved the fatigue and low mood I was feeling about 2-3 months ago whilst waiting for a second TSH test (started because the mood was getting dangerously low)

I know that it takes a couple of weeks at least for levo to kick in but should I be feeling this much worse first.

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Welcome to our forum Gambit62,

When starting on levo all the symptoms you've just described can be expected and several more. In order for us to get better sometimes we will feel worst initially and then gradually when all other factors are in place we could possibly get into remission.

Make sure your doctor test not only TSH but also FT4, FT3, TPOAb, TGAb, vitamin D3, B12, folate and ferritin.

All of them need to be on optimal levels. Mentioned vitamins/minerals are very important as if too low your thyroid medication won't work efficiently and you might experience symptoms from them too.

When blood is drawn always do tests as early in the morning as possible fasting and 24 hrs away from your last dose. You can take it after the test. New blood tests needs to be repeated every 6-8 weeks then increase of 25mcg applied and repeat until your TSH goes down to 1 or below.

Once you get your blood results you can post it with a new question and people will comment.

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You've said you have Hashi's antibodies - they can flare up at any time, even if you're on Levo, and you've barely started that as yet. That could account for feeling terrible. Very, very early days, as you've said, I'm afraid you'll need to be patient, it'll be 4 plus weeks before you start to get the full effect of your (small) dose.

Have you had your ferritin and Vit D checked recently? Being deficient in either of those won't help.

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Definitely don't take kelp or iodine with Hashimoto's. It can make it worse.

How small a dose are you on? If it's very small (25mcg) then that can make us feel worse, as it's enough that your own thyroid takes a rest, but not enough for you to use.

Usual dose to start on is 50mcgs, unless elderly or frail.

You could try taking at bedtime, it's possibly more convenient and may be more effective. Should always take on empty stomach and then nothing apart from water for at least an hour after

verywell.com/should-i-take-...

Are you on B12 injections? You may need to supplement with sublingual B12 in between

What about levels of folate, ferritin and vitamin D. These are often low too and may need supplementing to help thyroid hormones work

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

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

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

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What is your dose ? Once taking a thyroid hormone the Pituitary receives a message to indicate there is some circulating T4. This can sometimes lower the TSH and so your thyroid will lower T4 production - thus giving you more symptoms. This eventually balances out. Another test and dose adjustment will be needed in 6/8 weeks.

Please post your results with ranges. Are you gluten Free ? Taking Selenium ? Ferritin and VitD results also helpful

Welcome to the world of Hashimotos 😊😊

thyroiduk.org

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sorry Marz don't have details of the thyroid tests - just two 'borderline' low TSH tests and the antibody test coming back high ... and having to explain to the doctor why my B12 was over top of range on the first more general investigation.

I started taking the kelp (actually it was more upped the dose) after being told come back in 4 weeks for a follow up test as I knew I couldn't go on for another 4 weeks the way I was at that point ... and it really did help - the test was also a day or so after spending 3 days throwing up with a migraine ... and the second one suffered from the same which was why the doc did the anti-body test.

I'll be dead if I have to put up with 6 weeks of this.

I've had to ring in sick because I'm so tired I just well up with tears when I try to do anything. Just had a slice of toast but really don't feel like eating anything

The dose I've been started on is 25mcg

what is distressing me is that I really wasn't feeling symptomatic in the last month and a bit - aside from dry eyes wasn't really much in the symptoms list that I could relate to - so to now find myself unable to do anything this morning. It may be co-incidence but feeling this bad really did start after taking dose this morning - felt okay before I took it.

Have rung the surgery so will see what the doctor has to say.

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When it comes to thyroid - Docs rarely have much to say. I think 25 mcg is far too low a starting dose - it certainly was not good for me and I felt AWFUL way back in 2005. It is a journey I'm afraid. Maybe you are sensitive to the fillers - have a look. Which T4 are you taking ? I have read on here that some people have reacted badly to Teva and yet are fine on other brands.

Don't forget to ask for your results. You really need them so you can monitor your progress.

I believe you are injecting B12 daily which may well have masked some of your Thyroid symptoms - as we often quote on the PAS Forum - symptoms for both Thyroid and B12 overlap. You could be living proof of this.

Do hope you soon feel stronger.

You could try taking your dose at night - two hours after food.

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have been taking the dose really early in the morning - about 5am.

Doctor wasn't really much help - not that I really expect them to be - just gave me a sick note for a week.

Right now just feels as if the cure is a hundred+x worse than the illness.

Looks like the brand isn't Teva and I checked the ingredients before I took the first tablet.

Inject B12 quite frequently but not daily and in fact I've been injecting less frequently of late and hadn't been taking as much of the other supplements.

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Would you consider taking a 50mcg dose ? - it may resolve some symtpoms you are experiencing. With out the TSH kicking the Thyroid - it will have lowered its production - hence you feel unwell. I sat staring into the fire for days as I felt so awful in the beginning. Hang in there - it can only get better :-)

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Don't get discouraged just yet. I thought I'm going to die too. First 2 weeks bed ridden, extreme fatigue (I was so weak I walked and behaved like 90 year old), brain fog, unable to eat due to constant nausea, vomiting, headaches. The list goes on. Some of those symptoms were a reaction to levo fillers.

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thanks Gr8Nica. I have managed to get up and its useful to know that others have really bad reactions to start out with - don't think it is one of the fillers.

Were you very symptomatic before you started.

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I had a few symptoms before, some intensified once on levo and new showed up too. I know now that some were definitely due to my low vitamins/minerals.

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Hi Gambit, sorry to hear you’ve been poorly. I’m from b12 forum, we’ve spoken before. I’m just about to go down same route as you. My TSH was 4.9 and feeling rubbish even after having b12 shots every 8wks. I’ve had bloods done yesterday for T3T4 B12 liver function,U&E vit D & FBC . Waiting results. Think I’ve got Hashimoto’s . I’m going to pay to see an Endocrinologist- had enough of GP not dealing with my conditions. They haven’t got a clue, I’m feed up with the lot of them - Hope you get sorted soon. X

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Hi Gambit62

Sorry I should have read your profile first. How refreshing to find one, so clear and helpful

Always get actual results and ranges on all thyroid tests. It will be helpful to add the results after you speak to GP this morning.

You may persuade him to increase the dose after 2 weeks.

Teva Levothyroxine is the only lactose free Levo but oddly many people react badly to it. It's trial and error finding a brand that suits best.

Obviously difficult to tell yet if it's just the tiny dose (more likely) or the brand

Did you have vitamin D, folate and ferritin tested? If not ask that they are done

Also do you supplement a good vitamin B complex

This will help improve low folate and keep B vitamins in balance. Thiamine is often low too. B complex will improve

thyroidpharmacist.com/artic...

But If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Taking Levo at night may reduce the crushing tiredness that is occurring straight after taking

You really need to avoid multivitamins and any supplements that have iodine or kelp in. It can make Hashimoto's much worse

thyroidpharmacist.com/artic...

Always get bloods rechecked 6-8 weeks after any dose change. Likely to need several increases, always in 25mcg steps maximum, some need to step up even slower.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH and most consistent results

I see GP was as useless as chocolate teapot.

Suggest you ring receptionist and ask for print out of recent test results.

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So sorry to see you on this forum as well, Gambit - you’ve been such a help on the PA one.

I was started on 25mcgs (probably due to age, SVTs and medical ignorance) and left on it for over 3 years. Then found private endo (info from this forum was vital in getting me to challenge my GP) who called it ‘positively homeopathic’... and upped it. Agree with Marz and SlowDragon - do try to get results and post them and it’s vital that vitamin D, folate, ferritin, potassium and magnesium are ok. All good wishes to you - please keep us in touch with how it goes.

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SlowDragon, everything would have been tested 2.5 months ago - can't speak to the iron measures as I didn't get a copy of the results, or the vitamin D - right now can't face the 1.5miles trek to the surgery or the battle to ask for copies of results. Folate is going to be high and B12 really isn't an issue.

The crushing tiredness doesn't seem to be particularly time-specific now - took the levo over 5 hours ago and still feeling awful. Yesterday afternoon I noticed myself falling asleep at my desk about 2pm which was about 8 hours after the dose - at that point I assumed that I'd probably missed a dose of B12 - and that may have been the case - but I was pretty tired all evening and headed to bed shortly after nine. I've always had a tendency to cat-nap through the night so wake up several times (have cats and they have me trained to feed them at regular intervals :)) so have been taking the levo about 5-6 am. I felt good when I woke up at 5 this morning - took the levo and then half an hour/an hour later I had totally crashed and was lying there in bed close to tears just feeling so exhausted.

Pretty sure I don't have a gluten intolerance - though I've always had problems with white bread so avoid it like the plague - wholemeal is fine though. I have problems with basmati rice but other types don't bother me. No signs of lactose intolerance. Do have low stomach acidity so quite conscious that I may need to supplement to ensure I absorb enough of some minerals and vitamins but my diet is quite rich in iron and I have taken a small supplement daily over the last 30 years - though need to change when I take it now because of avoiding taking it too close to the levo.

Had a trapped nerve in spine couple of weeks ago and no idea how it got trapped (straightening up and twisting were very difficult/painful) so was on naproxen for a couple of weeks but the inflammation has gone down so have stopped using the naproxen - don't want to get into the situation of rebound headaches and would prefer to resolve it by keeping reasonably active - cycling was the most comfortable thing i could do so did quite a bit of that.

To be honest I really hate doctors so this is all a bit of a blow anyway because it means more contact with the beggars.

grauntieannie thanks for your welcome.

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Are you able to sign up with your GP Practice to see your results on-line ? It may help you to monitor things .... and avoid that journey :-) - or move to Crete where we have to keep all our own records :-)

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I'll have a look but I think they only offer repeat prescriptions.

I feel such strong ties to the area where I grew up that I've only moved a few 100m from the house I grew up in :)

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I tried to get hold of B12 levels from time of diagnosis - in hospital - but totally failed with that because they were obviously only on line and all I was provided with was hard copies of medical notes.

I'm just tired now - doesn't mean I won't have the energy later.

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Was only trying to make light of things in suggesting Crete :-) After a lifetime of illness I was sorted here re thyroid et al - maybe that is what retirement is for. Time to get yourself sorted !!

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sorry - didn't mean to come across as grumpy

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You did not appear grumpy - we often read here about how people feel when they first start T4 and it is not all good - all of the time. Keep posting and asking questions - especially when you have your results.

Perhaps you now understand my posts more on the PAS forum where people are struggling and it seems to be more than B12/PA. 😊😊

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As far as I am aware I have always acknowledged that it is very difficult to unravel B12 and thyroid problems. I do have a concern about people being told to supplement very high doses of B12 when it isn't clear that they have an absorption problem. B12 isn't toxic but raising serum levels in some people can cause problems. Its inevitable if you have to have injections because of an absorption problem but that doesn't mean that it should be overlooked in others - not saying that you have necessarily advised high level B12 supplements but it does happen and may not always be appropriate.

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Yes I hear you clearly.... I was referring to the folk who are told they have a *normal* thyroid when they have not been correctly tested. 😊

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yes, also aware of that ... would be really nice of GPs understood the limitations of test results and really started looking at clinical presentation ... though have to say that its a bit difficult when the symptoms could be anyone of, or even a couple of a number of conditions ....

Was speaking to a colleague at work the other day and trying to explain to her that the tests are really about looking for clues as to where to look so a normal result didn't necessarily mean it was okay (and sometimes an abnormal result doesn't mean it's not okay) - just gives you a clue as to what are the most useful things to explore further if something obvious doesn't scream out at you. She'd got a list of her results and everything said normal but I don't think it was complete as there was an exclamation by the FBC results which implied that there was something lower down in the results that wasn't quite right though it didn't appear on the paper that she had, so told her to query that ... and ask for a vitamin panel ... did mention that TSH on its own wasn't enough to rule out thyroid but finding out what the warning was on the FBC would be the first call.

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The gluten thing with Hashimoto's is not so much that we have intolerance of it (though some do)

It's more that the low stomach acid upsets gut. Leaky gut very often also an issue. This is literally holes in gut wall, this allows food particles to cross directly and inappropriately into blood stream. Unfortunate design error is that gluten partlicles are almost identical to thyroid molecules. Body attacks gluten and thyroid, results in high thyroid antibodies

amymyersmd.com/2017/02/3-im...

Many GP's have almost no understanding of autoimmune issues.

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most GPs have almost no understanding about most things - one of the curses of being a generalist :)

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Gambit62, sorry to hear you are feeling so rough... sadly welcome to the difficult world of thyroid dysfunctions. Am no expert just someone who has been having a much reduced quality of life for the past 3 years, a combination of problems - hypothyroidism and B12 deficiency and RA, etc. It is all so debilitating and I understand how you feel, feeling so weak and sick and crying in despair of feeling so unwell. Having to face pretty useless GPs, etc. does not help.

However, hang in there, and a gradual increase in levothyroxine is probably necessary as you are on a very low dose, also it is early days, it does take time for the drug to work; I understand this is not of much comfort to you but time is required for the correct dose to be established and then it often needs to be adjusted. Many people have given you much good advice. It is most important for you to obtain a copy of your blood test results since the GPs always say it's all normal when often it is not the case. It will help you argue your case with GPs. You will need to keep an eye on your results.

Incidentally you said B12 injections could cause problems - or words to that effect - what sort of problems? Hope you don't mind my asking.

Sending you best wishes in the hope you will start to feel better in a while. Please let us know how you are getting on. Take care,

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functional deficiency - serum B12 above range but all the symptoms of B12 deficiency is common enough to be recognised as a factor in the symptoms of some conditions - liver and renal damage - that can result in elevated B12 levels. One possible cause is an auto-immune response to high serum B12 levels that creates antibodies to the form of B12 that passes from blood to cells (TC2).

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Thanks Gambit.

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Gambit62,

Sorry to see you here on your own account.

I endorse the idea of taking levothyroxine at bed-time. (Though as I have always done that, I cannot compare taking it at any other time except on blood test days.)

One of the first things that I noticed when I started levothyroxine was better sleep - and feeling more refreshed in the morning. I had been going to sleep fairly easily but waking up - and staying awake - for hours from about midnight or 01:00 through to 05:00 or later. Contrary to the impression many doctors like to give, levothyroxine did not keep me awake or act as a "pep pill". :-)

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Nor to my surprise does T3

I take morning dose T3 at 6am and almost always go sound asleep straight after for an hour or so

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Thanks helvella.

have moved to taking the levo at night. Mood is better today. Also woke up feeling okay but didn't then have the experience of feeling awful an hour after taking the tablet.

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I have not figured out my Hashimotos since my diagnosis almost 30 years ago. I had an active case of Epstein Barr at the time. A doctor I follow online recommended this book which will be released next week. I have no affiliation with anyone. Just trying to better educate myself and spread the word. I take D, B’s (MTHFR), zinc, selenium and iron. My new functional health care provider says it can take a year to start feeling like yourself after you’ve figured out what your body needs. I tried the Westhroid and after about a month, my mouth was totally swollen. Took 4-5 days to resolve. Looked like the worlds worst filler job and hurt a lot. Pharmacist told me to take antihistamines and that my reaction was probably due to some of the fillers, not the actual pig thyroid. As I said, still sorting things out...,,

Medical Medium Thyroid Healing: The Truth behind Hashimoto's, Graves', Insomnia, Hypothyroidism, Thyroid Nodules & Epstein-Barr amazon.com/dp/1401948367/re...

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my problem is that I felt like myself before I started taking the tablets on Wednesday.

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Oh Gambit - sorry to see you're here, I hope you're feeling a bit better :) 25mcg is only a starter dose but enough to stop your own Thyroid hormone production so you just simply want to hibernate.

Make sure you do get your test result figures (my surgery does on-line) & if you post them here folk can try to help, as you know low vital minerals/absorbtion problems will get you down. I find Vitamin D & coffee help me (not together!)

Best wishes

Jane :D

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results on a later post

healthunlocked.com/thyroidu...

reality is that I'm really not coping very well. Has brought up a lot of old issues

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yes I was just reading your newer post, I'm sorry to hear that, it takes a while for the dose to 'kick in' - I felt awful on 25mcg (I argued with the GP but she said well, you're over 50 :( )

give it a try & if no good after 6 months or so, there are alternatives :)

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do you mean 6 months - not sure I will last 6 weeks.

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Rather than using the website associated with that book, I suggest:

Consult with a licensed healthcare practitioner before altering or discontinuing any current medication, treatment or care, or starting any diet, exercise or supplementation program, or if you have or suspect you may have a health condition that requires medical attention.

In case you think I am being hard and heavy-handed, that is what that site itself says.

I do not know what disclaimer the book contains.

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