Persistent symptoms despite Levothyroxine - Thyroid UK

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Persistent symptoms despite Levothyroxine

bajmon profile image

Hi all,

I have lost idea what to do. I've been on 50mcg Levothyroxine since April (I think) and I've been prescribed 75mgc to take ever other day. I've been on this for two weeks and I know it takes time to see any effect but I've been feeling persistently worse. This week I spend every day after work in bed and I struggled to get through a day of work but I had to because I work at a hospital. I've got such a terrible migraine and I can't do anything. What is going on and why do I feel worse and worse. I'm flying abroad in two days to see my family for the first time in nearly 2 years and the way I'm feeling now I don't think I can go.

Should I be calling 111 to seek advice? I'm quite wired.

17 Replies

So, you're taking 50 mcg one day and 75 mcg the next? I would imagine you're feeling bad because you're under-medicated. That was a stupid little increase. Very few people would feel good on such a low dose. What were your results when you were tested on 50 mcg?

bajmon profile image
bajmon in reply to greygoose

These were taken on 26/06 and my dude was changed about 2 weeks ago. TSH 3.630 (0.27-4.20 mlU/L)

T4 16.86 (22-22 pmol/L)

T3 5.0 (3.1-6.8 pmol/L)

Ferritin 33.81 (13-150 ug/L)

Total Vit D 52 (76-250 nmol/L)

Thyroid Peroxidase antibody <4 (0-24 lU/mL)

Haemoglobin A1c(IFCC) 34.00 (29-42 mmol/mol)

Sodium 140 (133-146 mmol/L)

Potassium 4.1 (3.5-5.3mmol/L)

Urea 5.6 (2.5-7.8 mmol/L)

Creatinine ∆85 (45-84 umol/L)

eGFR result/1.73m2 74

Total Bilirubin 5 (<21 umol/L)

ALP 66 ( 30-130 U/L)

ALT 23 (1-33 U/L)

GGT 15 (1-40 U/L)

Calcium 2.44 (2.20-2.60 mmol/L)

Adjusted Calcium 2.35 (2.20-2.60 mmol/L)

Albumin 49 (35-50 go/L)

Total Protein 77 (60-80 go/L)

Globulin 28 (24-37 go/L)

White blood cell count 5.4 (4.0-10.0 10*9/L)

Red blood cell count 4.77 (3.80-4.80 10*12/L)

Haemoglobin 143 (120-150 g/L)

Haematocrit 0.42 (0.36-0.46 L/L)

Mean Cell Volume 89 (83-101 FL)

Mean Cell Haemoglobin 29.9 (27-32 pg)

Red Cell Distribution Width 11.9 (11.6-14 %)

Platelets 241 (150-410 10*9/L)

Neutrophils 3.1 ( 2.0-7.0 10*9/L)

Monocytes 0.5 (0.2-1.0 10*9/L)

Eosinophils 0.1 (0.0-0.5 10*9/L)

Basophils 0.0 (0.0-0.1 10*9/L)

Erythrocyte Sedimentation Rate 11 (0-12 mm/hour)

I'm starting to wonder if I should have been taking Levo at all. When I was at the peak of Subacute Thyroiditis I read a lot about it and I know that my hypothyroidism is likely to be the last stage of that illness and that Thyroid function almost always goes back to normal in time and patients should not be given medication. Now I'm on Levothyroxine and have suppressed Thyroid and no way of finding out whether it can function on its own. My consultant asked me at the beginning if I wanted to wait or take the medication which would make me feel much better so obviously I went for the medication. I started to feel better a month after but that only lasted a month. Before he prescribed the new dose I was already feeling bad but not as I'm getting now. What I didn't know when agreed to the medication is what effect it can have on the thyroid.

greygoose profile image
greygoose in reply to bajmon

TSH 3.630 (0.27-4.20 mlU/L)

T4 16.86 (22-22 pmol/L)

48.6%

T3 5.0 (3.1-6.8 pmol/L) 51.35%

Well, those labs are saying that you're still hypo because your TSH is over 3.

Not sure what you mean by subacute thyroiditis. What caused it? Was it an infection? High antibodies?

Now I'm on Levothyroxine and have suppressed Thyroid and no way of finding out whether it can function on its own.

Well, you do have a way: stop taking the levo and see what happens. If you don't need levo, if your thyroid can produce enough hormone to keep you healthy on its own, then it will go back to doing so. It hasn't been permenantly put to sleep, just having a little rest.

Levo isn't 'medication' in the normal sense of that word, it isn't a drug. It's thyroid hormone replacement. Stop taking it and the thyroid will start producing as much hormone as it can again. You might not feel well in the beginning but testing after three months will tell you if you need to go back on levo or if you can do without it. :)

bajmon profile image
bajmon in reply to greygoose

Subacute Thyroiditis is caused by viral infections which in my case was likely to be Corona viruses and Covid19 which I had free months before. My TSH was higher on the last three then when I was not on Levothyroxine. My previous TSH was about 2.7

greygoose profile image
greygoose in reply to bajmon

OK, well, what is happening is that taking the levo has stopped your thyroid making any hormone, but you're not taking a high enough dose to completely replace what your thyroid was making.

So, you either need to increase your levo by a decent amount to bring your TSH down to 1 - a 'normal' (euthyroid) level - or stop taking it altogether if you want to see if your thyroid has recovered.

At the moment, you're neither doing one nor the other, and that is making you feel bad. So, time to decide what you want to do.

bajmon profile image
bajmon in reply to greygoose

Thank you. I've contacted my consultant so hopefully he'll make the right decision. I don't want to make myself wide by just stopping

greygoose profile image
greygoose in reply to bajmon

Wide?

I've been taking the Better You spray for about 2 weeks now. This was recommended here to me as well though my consultant reckon I only need to take 1000 after the summer. I use to take 4000 and felt better I remember.

SeasideSusie profile image
SeasideSusieAdministrator in reply to bajmon

bajmon

Total Vit D 52 (76-250 nmol/L)

my consultant reckon I only need to take 1000 after the summer. I use to take 4000 and felt better I remember.

Doctors get little, if any, training in nutrients and wouldn't know what an optimal level was if it punched them in the face. And not everyone makes Vit D from the sun in the summer. Personally I prefer to be guided by the people who make this their speciality.

The Vit D Society and Grassroots Health recommend a level of 100-150nmol/L, with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L.

To reach the recommended level from your current level, you could supplement with 4,000-5,000iu D3 daily.

Retest after 3 months.

Once you've reached the recommended level then a maintenance dose will be needed to keep it there, which may be 2000iu daily, maybe more or less, maybe less in summer than winter, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. This can be done with a private fingerprick blood spot test with an NHS lab which offers this test to the general public:

vitamindtest.org.uk/

Doctors don't know, because they're not taught much about nutrients, but there are important cofactors needed when taking D3. You will have to buy these yourself.

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

For D3 I like Doctor's Best D3 softgels, they are an oil based very small softgel which contains just two ingredients - D3 and extra virgin olive oil, a good quality, nice clean supplement which is budget friendly. Some people like BetterYou oral spray but this contains a lot of excipients and works out more expensive.

For Vit K2-MK7 I like Vitabay or Vegavero brands which contain the correct form of K2-MK7 - the "All Trans" form rather than the "Cis" form. The All Trans form is the bioactive form, a bit like methylfolate is the bioactive form of folic acid.

Magnesium helps D3 to work. We need magnesium so that the body utilises D3, it's required to convert Vit D into it's active form, and large doses of D3 can induce depletion of magnesium. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

bajmon profile image
bajmon in reply to SeasideSusie

Thank you. I'll be taking my 4000 for now and retest in 2 months. I bought Better you spray but found that Solgar 4000iu either quite well in the past before I knew I had thyroid issues.

I'm taking magnesium and complete bit B bit only sporadically so I think I should get on with it better.

Thank you for all your suggestions. I really appreciate every one comment.

Do you take the same brand of levo all the time? Some brands can make you feel worse due to side effects. What brand are you currently taking?

bajmon profile image
bajmon in reply to Hookie01

Yes, is always the same one. I was given the actual extra 25mcg to take ever other day and it didn't say on it what brand it is. But I only took the first pill today. Up to now, I was cutting the 50mcg in half because my consultant have a prescription and write on it Thyroxine instead of Levothyroxine and all pharmacies have refused to dispense.

Hookie01 profile image
Hookie01 in reply to bajmon

Thats unusual that they don't have a brand on it, its usually in the blister pack. I was just thinking as they are giving you 25's as well as 50's they may have given you Teva as a lot of people struggle with Teva. Just seems strange you were doing better on the 50.

bajmon profile image
bajmon in reply to Hookie01

Il haveHi, I just had a look and the 25 is Teva and the 50 is Northstar but I only took first Teva today so that wouldn't be the cause. I felt better after about a month on 50mcg but that was also due to the fact that Subacute Thyroiditis was getting better as well. I no longer had fever, neck possible was gone and my infection markers were back to normal. I felt much better mentally, I had more energy, my legs were not swelling. But that only lady about a month after starting Levo. Then occasionally I'd be very drained and had to spend a day in bed. Usually after some stressful days or if I did some exercise etc. Anything was draining my energy. I confess that I eat way to much sugar and thought this could be the reason. My consultant had never even mentioned anything about any diet and I keep reading contradicting information. "Most important think it's to supply body with diary and the next article tried me to avoid diary" 🙄

helvella profile image
helvellaAdministrator in reply to bajmon

If you had asked, they would have had to supply the correct Patient Information Leaflet with any medicine dispensed.

However, if you look at the tablets themselves, you should be able to identify them. If you can't, by checking the linked document below, post as good a description as you can manage.

helvella - Thyroid Hormone Medicines

I have created, and try to maintain, a document containing details of all thyroid hormone medicines in the UK and, in less detail, around the world.

dropbox.com/s/shcwdwpedzr93...

"Thyroxine" is no longer a recognised name for the medicine. It is towards the chillingly concerning level that a consultant doesn't know how to write a valid prescription. And the change of approved named was not recent!

According to New Zealand's health people:

Thyroxine has been labelled as levothyroxine since January 1998.

bajmon profile image
bajmon in reply to helvella

I spoke to the ductus after the refused medication and he said the he's aware of the name change but the pharmacy is a "little Chicky" not to dispense. He said that he suggests writes Thyroxine on his prescriptions and never had any problems. Then he said he'll write a letter to my GP in a week time to have that prescribed by the GP so I can order the new dose of 25mcg and the previous 50mcg together via GP surgery. This is what I have asked him to do actually. When he prescribed the 50mcg, he wrote a letter to the GP so I wouldn't have to pay for private prescription. But when he wanted to add 25mcg every other day, he gave me his prescription. Bit confused to his logic. At the end he didn't write the second letter until I chased him several times to I had 2 weeks delay. I only got my 25mcg finally yesterday and I saw him at the beginning of July.

Like others on this forum, I am no medical professional and can only give you a rough guideline into what I think may be going on based on my own personal experience with levothyroxine.

Firstly can I ask why you visited your GP prior to thyroid diagnosis, what symptoms did you have for your GP to do blood work.

Secondly, some people that are given levothyroxine will not be able to satisfy the brain and livers demand for the active part of the levothyroxine which is T3 on levothyroxine alone.

Depending on what's the root cause of your thyroid dysfunction will determine what else you can do to help with ongoing symptoms.

Root causes can be thyroid nodules that can leak additional thyroid hormone into the blood stream.

Some thyroid experts believe our gut biome could be a root cause for ongoing symptoms. Others believe that having optimal vitamin and mineral levels could be a reason why you are still not feeling well.

Bearing in mind my age group, and my own personal lifestyle habits past and present which obviously have a huge significance to the options and choices that I have personally made for as close to good health as I can possible get under the circumstanc are as follows.

Maximise absorption of nutrients via good eating practacises, sugar feeds our bad bacteria so i reduced firstly my sugar intake.

I added some live yoghurt and also take a Supplement of 3 billion good bacteria.

You can also increase your efficiency to digest and absorb by adding digestive enzymes, most people my age have reduced digestive enzymes as digestive enzymes become less available as we age. You could check via Google if your age group would be affected by this issue.

Now sometimes after starting levothyroxine our cholesterol levels can increase requiring further medications which a lot of fellow suffers will advise against taking. The cholesterol increase can be a result of the liver not recieveing optimal levels of the T3 which I mentioned earlier. Statins are usually what is offered but ezerterol can also be obtained if necessary which for some is a better option although reducing cholesterol via natural methods is advised if possible. Increasing good cholesterol is the best route to reduce bad cholesterol along with an awareness of the dangers of consuming too much butter, cream and similar substances.

There are many different types of diet out there which can massively reduce many ongoing symptoms, it is impossible to know if I diet is good for your by going of another's personal needs, this you will have to discover by trail and error but hopefully with knowledge of oneself you will be able to establish right one for you.

Tiredness can be caused by various methods, stress, exhaustion, low iron, low B vitamins, poor oxygen circulation, poor diet and or nutrient absorption. And possible other reasons.

Many of the above can be solved but you first have to understand your own personal root cause.

Ashwagandha is good for stressful periods along with rhodiola and also ginseng, if your body is under stress you could try one of the above to see which best suits.

Exhaustion requires rest and recovery, make time to rest, turn of phones, put a do not distribution sign on door, ear plugs and eye shields if necessary. If saying no is an issue to people in need learn to say no, but make rest and recovery happen.

B vitamins are essential for good energy levels, if you are unsure if you are obtaining enough B vitamins via food and absorption there is no serious danger to taking a complete B supplement as long as you stay within the recommended dose range for your own personal requirement, if you ask the assistants in most health shops they are extremely good at advising right product and dose for particular symptoms eg normal to extreme symptoms may require different dose/ strength.

Oxygen is needed by all our cells for respiration, certain individuals may have a reduced oxygen level. If you think your cells may have an inadequate oxygen supply which also may be another root cause you could try ubiquinol which is the ready to go version of co enzyme q 10. I personally have found this little suppliment heaven sent. There is also a product called schisandra which can also improve oxygen levels but if you are in uk I was told that you will not be able to acquire as the license fee for uk use was not obtained?? Still I have seen products claiming to obtain schisandra on Amazon but have not tried them so can not say if useful or not.

My journey on Levo went like this. Started Levo felt mentally worse, I felt like Johan inside the whale. Days I refused to take my medication I felt mentally alive and so for the first year or two skipped a lot of doses. I tried sea kelp instead for several months and felt mentally well.

Despite the extreme mental cloud and slowness of mind with Levo it did improve my energy by loads and also prior to Levo I had terrible pains in my hands and could not open bottle tops, once I started to take Levo regular the pains in my hands were reduced and could also now open bottle tops.

Another huge difference Levo made was with the cold. I was always cold even when the sun was out, it was like it just didn't warm me, after a few months on Levo that cold disappeared and I could feel warmth again.

Well there was additional price tags to pay for my Levo improvements, after a few months on Levo I developed increased cholesterol, intolerances to caffeine and sugar, tachycardia which put me on beta blockers, aspirin and eventually cardiac ablation which meant I no longer had to take beta blockers which was great as in the long haul they make heart muscl weaker. And if that wasn't enough my vision went to *rap, my skin changed in every way apart from the dryness😁 and I become socially intolerant which require anti psychotic meds, hmmm.

If you have established good diet and lifestyle practices and tried various herbs and still feeling unwell you may have to have further tests to find your personally root cause.

Good luck and blessings to you in your journey to good health.

PS low mood if you have one may be serotonin levels 😅😉

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