Feeling unwell

[Babysweet]

I just had total thyrecdotomy about 6weeks ago..I was prescribed Levothyroxine 125mcg.i noticed recently I don’t feel too well as the day progresses. Like I feel dizzy and disoriented by evening. I don’t know what is going on. Any ideas?

[greygoose]

If you've been on levo for six weeks, it's time you had a retest of your levels. Ask to be tested for nutrients, too: vit D, vit B12, folate, ferritin. These are often low with thyroid problems, and need to be optimal for the body to use thyroid hormone effectively.

[Babysweet in reply to greygoose]

Thank you so much

[greygoose in reply to Babysweet]

You're welcome.

[Muffy]

Patients used to be prescribed between 200 and 400mcg of thyroxine after a total thyroidectomy. That was before TSH tests, so it is unlikely that you will be prescribed at the higher end. As greygoose has said, you now need to be tested again to see if you can have an increase.

[Babysweet in reply to Muffy]

Thank you

[cbraffe]

Sorry that you are unwell. It takes a while to adjust to not having a thyroid. I had mine done 8 months ago. Most of my symptoms were due to the fillers in the thyroxine. I am diary intolerant and was not told lactose was part of the fillers. I moved on to Teva which was worse. At the moment, I self medicate but have different symptoms. It is just a journey. Please brace yourself. We are not given enough information before surgery. It gets better in the end but your body will need to adapt. Good luck

[Babysweet in reply to cbraffe]

You are right not much information was given before surgery. Thank you. Will ask to do a blood test.

[cbraffe in reply to Babysweet]

All the best. Did you have graves

[Babysweet in reply to cbraffe]

Am not sure. I had a large goiter that needed to be removed.

[2angelwings in reply to Babysweet]

Ask for the pathology report as it often provides more insight. If you can obtain it before your appointment it will give you time to review it & have any questions ready.

[valjo18 in reply to Babysweet]

Not much information is given before Radioactive Iodine either! To be honest I wonder if they know definitively!

[pennyannie in reply to valjo18]

I don't think they have any idea of the consequences of RAI - just speaking of my experience obviously. It's interesting that Professor Toft came out, in his retirement year, to speak openly about the current whole issue of thyroid hormone replacement. and also acknowledged that he was now reluctant to advise his patients, with Graves Disease, for either surgery or RAI thyroid ablation, suggesting long term AT medication having a better outcome for the patient.

The full article is on here :- Thyroid Hormone Replacement - A Counterblast To Guidelines.

[valjo18 in reply to pennyannie]

That's my opinion also. I started with Graves in my early thirties and for many years the hyperthyroidism kicked in periodically. A year or so on AT medication would fix it for a time (usually between two and four years) and then it used to start up again. When I reached sixty and it flared up again Endo recommended RAI, not a lot of information given but I thought it would solve the problem. How wrong could I be, think it was one of the worse choices I ever made. Haven't really been right since, at least before, I had periods of feeling normal.

[SlowDragon Administrator]

Bloods should be retested 6-8 weeks after any dose change in levothyroxine (or brand change)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3 £29 (via NHS private service )

monitormyhealth.org.uk/thyr...

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

List of hypothyroid symptoms

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

Levothyroxine should always be taken empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more effective and/or more convenient taken at bedtime

verywellhealth.com/best-tim...

markvanderpump.co.uk/blog/p...

healio.com/endocrinology/th...

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap. Some like calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

Come back with new post once you get results and ranges

[Babysweet in reply to SlowDragon]

Thank you so much. Will give an update after tests done

[Batty1]

125mcg takes me back to my early thyroidectomy days ... Like everyone here said it’s time for a blood test and for the 200 to 400 mcg after thyroidectomy I never saw more than 125mcg. I’m currently on 100mcg and 10mcg Cytomel and doing ok.

See if you can add T3 (Cytomel)to your T4 dose since most of us without a thyroid need the T3.

[Babysweet in reply to Batty1]

Thank you for this tip

[cbraffe]

Hi how do u source the T3

[LizzieAFib]

Hi Babysweet. I used to feel dizzy sometimes when I was on levo, same dosage as you - it was our village pharmacist (great guy) who noticed I was feeling dizzy and explained that was one of the side effects of high dosage of levo. I don't get dizzy anymore as I'm now able to manage on a reduced dosage - 75mcg. As others have suggested - see if you can get your levels retested.

[Babysweet in reply to LizzieAFib]

I sure will much appreciated.

[blondpalomino]

Hi Babysweet,

I had my thyroid removed 20 years ago, like you due to a large goiter which was pressing on my windpipe.I had Hashimotos.I was put on 100mcg thyroxine.Before the op I was told I would have thyroxine and I would be just the same! You've got to be kidding! It took a long time for me to get well.I was so tired all the time, couldn't function in work (Bank).I went back to the Doctor, who increased me to 125mcg, then after my blood test said TSH was too high and reduced it again. I was referred to Endochrinologist, who put me on T3 as well as thyroxine.It was in the days where you could get T3 without any problem, now they have tried to get everyone off it as it is so expensive. But if you have no thyroid at all then you need T3 as well to feel even remotely well again.In the last couple of years I'v had to be referred again to the Endo to keep hold of the T3 as they tried to get me off it, but I can't function without it. If you are still unwell, insist on a referral to an Endo and ask for a trial on T3.

[Babysweet in reply to blondpalomino]

Thank you so much for this detailed info.

[Healthseeker in reply to blondpalomino]

If your TSH is high then you need more thyroid hormone not less

[blondpalomino in reply to Healthseeker]

sorry, slip of the finger! Yes I meant too low!

[Healthseeker in reply to blondpalomino]

Ah good. Glad your doctor wasn't being incompetent!

[Baggieswidow in reply to blondpalomino]

Omg that’s exactly how I was when I had mine removed, I was told I’d be back at work in 2 weeks! It wasn’t just the tiredness etc. I felt depressed, couldn’t stop crying. I had a wonderful lady GP who understood and got me T3, I’m not saying it solved everything but at last I could function. I am now on 100mcg of levothyroxine and 20mcg of Liothyronine, I constantly have a suppressed Tsh and my levels are only just above the minimum. I had my T3 stopped because of costs and went back to being a total mess, I had tests which proved I needed it and got it back. Once again finances seem to be more important than my wellbeing and they are trying to stop it again, my Endo has written to my GP so watch this space....

[blondpalomino in reply to Baggieswidow]

Hi baggieswidow,

yes I had to jump through hoops to get it back after a spell on thyroxine alone, I had high blood pressure, racing heart, I though I was having a heart attack! I said to my Doctor this will kill me if I can't get it back!

[LAHs]

125mcg of Levo was my starter dose after a TT, and it wasn't enough. Ideally you should have been put on T3 only for a couple of months - but that ship has sailed. Probably 125mcg is not high enough to generate sufficient FT3 which is what you need to feel well. While waiting for your next appointment or blood test you could try some selenium either from a supplement or from 2 Brazil nuts per day. Selenium is the catalyst for the T4 to T3 reaction. Ideally you should measure your Selenium level first so that you do not overload.

You will run into a problem with your doctor: as you raise your Levo dose in order to generate T3 your TSH will go down. Your doctor will freak out over that and will not allow you to raise your Levo after a certain level. You must ignore the low TSH - and then read a lot of our posts since this is one of the major problems with thyroid hormone maintenance.

If raising your Levo or taking selenium does not raise your FT3 then you may need to source T3 or NDT - not easy outside of the US, but not impossible.

[MONALISAWILLIAMS]

Hi, I haven't posted in a long time. But after surgery it took a while for my body to adjust. My side effect were the same and my body use to crash. I had multi side effect. My doctors increased my synthetic to 150mcg, it worked for a while. With every test my T3 was low, and they will not prescribed t3. So I fought with different doctors for 10 years to change the medication. They just change it in October 2019. I am now taking armour thyroid 120 mcg and I have no side affect, beside the hair loss on my sides. Thank God one doctor listen. It is an adjustment after surgery, but listen to your body it Will tell you if the medication is the right dosage. I always get a headache, feel very tired, irritated and brain fog when my levels are low and the medication need to be increased