Am I getting too much Levothyroxine post-thyroidectomy?

[trishmaley]

Hello everyone - Please be patient, I have a long story! I had a partial thyroidectomy in 1979 (when I was 26) because of a large nodule. I did not have to take any medication and my thyroid levelswere apparently "normal" over the years., although I have really never felt completely well since that operation and gradually started putting on weight from that date. I was subsequently diagnosed with ME and Fibromyalgia after complaining of constant exhaustion and chronic pain. I was also diagnosed with depression and from about 1995 until a couple of weeks ago I was on a high dose of an SSRI anti-depressant. On 29 November 2018 I had a total thyroidectomy as my remaining thyroid was multi-nodular, with one of the nodules, deviating my windpipe. Immediately after the op I was prescribed 150 mcgms of Levothyroxine and at my follow-up appointment with the consultant on 11 Decembeer 2018 everything seemed OK. However, a week or so after this , I started to feel awful; with headache, lackof energy (worse than usual) and so irritable that I felt as if I was going to murder someone, and I was continually hot and sweating like a horse. I went to see my GP who ordered a blood test on 19 January which showed my levels were very high so he reduced my dosage to 125mcgms. I was also told that my Ferritin levels were low but nothing was prescribed for that. When I saw my consultant again on 29 January I was told that the pathology on my thyroid showed that I had probably had Graves' Disease, so heaven knows how long this had been true, because it has not been diagnosed anytime pre-op! I was discharged by the hospital and told that my GP would now handle the medication I would be prescribed. I am not due to have another blood test until the middle of April, but I am feeling very irritable again, have a constant headache, feel hot and sweaty all the time and have severe cramping in my hands, feet and legs. Can anyone offer any suggestions/advice? Thanks a bunch - Trish

[jimh111]

This is sloppy care. I would ask your doctors for full copies of your blood test results as you will need them. I would contact your consultant and explain that you are now unwell and request that they test you again now. It might be helpful to try a mangesium supplement for your cramps.

[Nanaedake]

Definitely get a copy of results, however, as you have cramps you urgently need calcium and vitamin D levels testing. Contact your GP and ask for immediate testing and contact your consultant through the Secretary to ask for immediate review. Point out that you've only recently been correctly diagnosed and you now need to ensure you are getting the right care to alleviate symptoms.

[jimh111 in reply to Nanaedake]

Good point. Hyperthyroidism can cause loss of electrolytes which includes magnesium, calcium. Measuring TSH, fT3, fT4 and calcium should be done. Magnesium blood tests are unreliable most of the time, except when they show low ionised magnesium.

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges.

UK GP practices are supposed to offer online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Very important to see exactly what has been tested and just as important what hasn't been tested

Ask GP to immediately test vitamin D, magnesium, folate and B12

Always get actual results and ranges

If your ferritin is low GP should be prescribing iron supplements or, if very low then you might need iron infusion

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Last Levothyroxine dose should be 24 hours prior to 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 or all vitamins

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

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

Come back with new post once you get results

[Gcart]

What about parathyroids (think thats what they are called) responsible for calcium levels . were they removed at surgery ?

Most important that you know .

You need to be seen asap .

[annnsandell]

How often have we heard of poor diagnosis like this, I feel for you, it sounds like for years you have been treated for things you haven't got rather than tackling the underlying cause (as usual), I don't know how we combat this apart from increasing knowledge. Has anyone checked your Calcium, this should be routine testing after a Thyroidectomy.

[Gingersnap202]

Why do I keep reading about people who have had thyroid nodules removed? I had a large nodule 30 years ago. My Doc had a scan done and said; "It's a hot nodule lets wait and see what happens". (Apparently "cold" nodules are feared cancerous.?) Anyway, I found a thyroid Doc who put me on thyroid meds. The nodule gradually disappeared. So, I'm wondering why so many Docs are removing them instead of treating them?

[SilverAvocado]

I think you've got to educate yourself and make sure you're double checking everything doctors do. Sounds like you've had an awful time of it

This forum is a great place to start learning about everything, and you've had great advice so far.

[trishmaley]

Thanks for all the good advice so far. I have called the GP and asked for my blood results, which I should get on Monday. I certainly have a lot to learn about my condition! Is it worth getting in to see my consultant, as he's a surgeon? Shouldn't I be seeing an endocrinologist?

[Hidden]

If you can try to take a medichecks bloods test and put the results with the ranges on here for more answers I do and now feel well again. Take the test fasting, first thing and leave off Levo for 24 hours before the test. The one I take is called thryoid ultra vit. It does cost money but it's well worth it to feel well again. You can order a nurse to come to your house on the site too. Good Luck.

[anna60]

Trish it can take some time to get the dose right. It did with me after RAI. I had bloods done every 6 weeks alternating between the hospital and GP and when I went underactive as was expected I was put on a low dose of thyroxine which was gradually increased after hospital bloods and ended up on 150mcg which was too much. Eventually settled on 125 mcgs and still on that now. My concern with you is how quick the hospital has discharged you to GP care only and how quickly they put you on levo but I guess that's how it's done these days. Hospital did not discharge me till around a year after treatment and another 6 months before going to annual bloods but that was back in 2002 - 2003. I don't think any of us get the treatment we deserve these days due to lack of funding. You should as others have said get copies of lab results every time you have bloods done, I also believe GP's might take your symptoms more seriously when they know you are checking everything. Question and question more is my motto these days.

[Wate]

Hello.

So sorry to hear you are suffering like this.

In my experience, which is not disimular to yours. Your GP is not knowledgable enough to deal with any of this. Get them to refer you to a endocrinologist.

If you can afford it go private. Prof Wass is one of the best in the world. Hes in Oxford if you are near or could get there. Believe me if ypu are in his care you will get your life back.

Also... i would look into a medical negligence issue here as well.

Good luck. Keep us informed.

[trishmaley]

Hi everyone and again, thanks for all the feedback. I am feeling worse by the day, my whole body hurts, I have a constant pounding headache and I feel murderously irritable but I have been told that I can't see my GP until April! I will call again on Monday. When I asked for copies of my blood test results, the receptionist said that she would "check with the doctor that I can have them". Surely I am entitled to copies of all results? I have ordered some Magnesium, Vitamin D and Calcium supplements in the meantime. I am astonished that I have not been prescribed anything for low ferritin. Unfortunately I am an OAP on a very limited budget and am unable to see a specialist or have blood tests done privately. Any further suggestions?

[Greekchick in reply to trishmaley]

Dear Trishmaley,

I am so sorry to read about your travails with medical care. I just had a TT 3 weeks ago and the recovery and meds adjustment takes time, as I am discovering.

Are you still on an SSRI? These are known to increase weight and affect mood in unexpected ways. If you are no longer on it, that would not apply.

I wish I had more expertise to help you , but just wanted to let you know that I am sending you good wishes and positive energy that you will find a solution to your difficulties with your doctors. You have gotten good advice from others here with much more experience than me. I hope things get better for you.