thyroidectomy

[Nikkimoz]

hi I had a near total thyroidectomy in feb due to hashimotos thyroiditis causing a large multinodular goitre in my neck. I’ve just had my latest bloods back T4 is 18.2 and TSH is 1.68. I’m struggling with physical exhaustion and joint pain more so than before. Does anyone know if these levels sound about right? I’m on 175 mg levo now and was on 150 before

[Jaydee1507 Administrator]

Did you do the test as per the protocol recommended here? Recommended blood test protocol: Test at 9am (or as close as possible), fasting, last levo dose 24hrs before the blood draw & no biotin containing supplements for 3-7 days (Biotin can interfere with thyroid blood results as it is used in the testing process)? Testing like this gives consistency in your results and will show stable blood levels of hormone and highest TSH which varies throughout the day. Taking Levo just prior to blood draw can show a falsely elevated result and your GP/Endo might change your dose incorrectly as a result.

What supplements are you taking?

What are your latest blood results for ferritin, folate, B12 & D3?

Private tests are available if GP won't test, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/help-and-supp...

Your TSH is too high. Most people feel well when TSH is closer to or just under 1. You really need TSH, FT4 & FT3 tested all at once to know whats happening and if you are converting T4 to T3.

It's ideal if you can always get the same brand of levo at every prescription. You can do this by getting GP to write the brand you prefer in the first line of the prescription. Many people find that different brands are not interchangeable.

[Nikkimoz in reply to Jaydee1507]

the bloods were taken at gp surgery after work one day. They were the only results she would give me over the phone when I asked after she just said all were normal. I also take vit d vit b12 evening primrose oil and glucosamine along with an array of meds for blood pressure and anxiety

[Jaydee1507 Administrator in reply to Nikkimoz]

Were these bloods on 150mcgs?

Anxiety is a hypo symptom, probably low FT3 which NHS tests won't show.

There are details that will really pay you if you can stick to such as early morning blood test and leaving 24hours since last dose of levo before the blood test. This will show your TSH higher and your FT4 lower and will better indicate to your GP that a dose increase might be appropriate.

I know these things are tough when you're struggling ith multiple other things on top of not feeling on top of the world.

Anyway, I recommend you get private bloods done for TSH, FT4 & FT3 to see if you are converting. Also full vitamin testing (GP may agree to do this).

Have you ever been tested for thyroid antibodies? Many with autoimmune thyroid disease aka Hashimoto's benefit from a gluten free diet. A smaller percentage of those also need to remove dairy from their diet to feel well. These are intolerances and will not show up on any blood test.

[Nikkimoz in reply to Jaydee1507]

I am also coeliac so have been gluten free for 3 years anyway. Yes the bloods were on 150 mcg. After the thyroidectomy my bloods were repeatedly taken. Never was told not to take my levo. Il look into the private bloods but I think when I’ve looked before they were quite pricey so il have to see what I can do. I also think I’m premenopausal or menopausal so do have a lot of issues 🫣

[Jaydee1507 Administrator in reply to Nikkimoz]

If you can persuade a helpful GP to do the vitamins then the cheapest would be Monitor my Health at £32 then use the 10% discount code from the link above.

Getting private bloods in many ways is a great start to feeling well again and knowing what will help you.

[Buddy195 Administrator in reply to Nikkimoz]

Regarding peri menopause , it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing medications & having up to date research articles. There is also an ability to post questions.healthunlocked.com/redirect... 

[Nikkimoz in reply to Buddy195]

oh thanks so much for that I will check it out

[SlowDragon Administrator in reply to Nikkimoz]

Always test early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Essential to test vitamin D, folate, B12 and ferritin…..especially as you are coeliac

Are you taking any magnesium or vitamin B complex

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins then cheapest option for just TSH, FT4 and FT3 and includes BOTH TPO and TG antibodies -£29 

randoxhealth.com/at-home/Th...

Monitor My Health also now offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65 

(Doesn’t include thyroid antibodies) 

monitormyhealth.org.uk/full...

10% off code here 

thyroiduk.org/getting-a-dia...

NHS easy postal kit vitamin D test £31 via

vitamindtest.org.uk

Only do private testing early Monday or Tuesday morning. 

[NIKEGIRL]

hi. I am the same age as you. I had a full thyroidectomy and experienced exactly what u r saying. I was lucky, if u can even say that. But my t4 was 18 like yours but my t3 was tested, I live in New Zealand, and it came back at 2.8 range 2.5-6.0 so something like 8% conversion. Dr was happy. I was not. Was told I expected too much 3 months post surgery. I was not coverting the levothyroxine so I asked for NDT. 2 weeks on the NDT and the fatigue was gone totally. Again like you I was on 150mcgs of levothyroxine and then 175mcgs and the conversion got worse and I felt awful. So. As many good people have said here you really need to see what is happening with the t3. Only then will u see the full picture of t4 to t3 conversion. I’m New Zealand NDT is a valid treatment option which I am grateful for. It changed me totally. 7 weeks now from starting the NDT and I’m almost as good as new. I hope this gives you some hope.

[Nikkimoz in reply to NIKEGIRL]

thanks so much for that reply 🙂 sounds hopeful. I’m not sure where we stand here in the uk with ndt. A friend of mine orders it online and I know she has issues. I’m going to get the private blood tests sorted and hope that will shed some light. Thank you 🙏🏻

[NIKEGIRL]

hi. Yes getting the relevant testing is the starting point and from there you will have the information you need to move forward and make a decision. There are options like maybe some more levothyroxine depending on t3 levels. Maybe u convert horribly (I was abysmal) and maybe some t3 would be helpful. There are so many variables at play until you know your blood results. I was plagued by this fatigue and it was terrible. I felt like I was dead from the hips down. I felt just exhausted and in the worst days I would be in bed. I was exhausted physically and slept 24 hours lucid. I couldn’t move but I could hear everything going on around me. I want you to know there is hope. This forum is amazing. There are so many knowledgeable administrators who will give you good solid advice.

[pennyannie]

Hello Nikkimoz ;

Your surgery was only a couple of months ago so it is still early days in your recovery but these sound like symptoms of hypothyroidism which is now your health status as you haven't a thyroid.

To be able to give you any sensible advice we need to see a TSH, Free T3 and Free T4 blood test and range - drawn at the same time.

Since you haven't a thyroid it is essential to be dosed and monitored on your Free T3 and Free T4 readings and not a TSH - which often is all that is actioned in primary care.

T4 - Levothyroxine is basically inert and a prohormone and needs to be converted into T3 within your body, which is the active hormone that runs the body.

We generally feel at our best when on T4 monotherapy when our T4 is in the top quadrant of it's range as this should in theory convert to a decent level of T3 at around a 1/4 ratio - T3/T4. : with T3 said to be around 4 times more powerful than T4.

No thyroid hormone works well until your core strength vitamins and minerals, those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg.

Some people can get by on T4 only.

Some people find that T4 seems not to work as well as it once did but by adding in a little T3 - Liothyronine - making a T3/T4 combo of thyroid hormones they are able to restore their health and well being.

Some people can't tolerate T4 and need to take T3 only :

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroids dried and ground down into tablets referred to as grains.

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

When metabolism is slowed your body has trouble extracting key nutrients through food so it would be sensible to get a full thyroid blood panel run to include a TSH, Free T3, Free T4, plus inflammation, and your ferritin, folate, B12 and vitamin D - thyroid antibodies will get run even though you haven't a thyroid.

Once we have this information we can explain what the results mean and offer you advice and support and your next best steps back to better health.

If your doctor can't run these blood tests there are private companies who can on the Thyroid UK website - thyroiduk.org - do not take your T4 the day of the blood test - leave around 24 hours from last dose to blood draw and take your daily T4 after the blood draw and stop any supplement for around a week before the blood test so we can see what your body is actually holding on to.

[Nikkimoz in reply to pennyannie]

thank you so much

[hypogrand]

You are having hypo symptoms. I keep a spreadsheet of my labs vs optimal lab results. It wil help when you speak to your Dr. to know where your optimal lab numbers should be. I also use a calander w/lrge squares to keep track of how I'm feeling. We have to be our own advicates when it comes to our health. Synthroid/levo did not work for me because it is a T4 only med. I did not convert to T4 to T3 so I changed docs several times until I found one that would prescribe NDT med. Made a HUGE difference.