Thyroid surgery, but still feeling ill

[Louise_h81]

Hi,

I had my thyroid removed 7 months ago. At first it seemed a success, I felt so much better, my levels were good and the medication was working. Now, my bloods say Im ok, but I feel so ill, tired all teh time, crying, anxious, panic attacks the whole lot.

Will this get better or am I stuck with it for life now?

Thanks x

[shaws Administrator]

Sorry I cannot insert link:

Louise I am sorry you are having a rough time at present. Your symptoms are clinical symptoms of hypothyroidism and if I was a betting person, I would bet that you are underdosed.

My personal view is that people whose thyroid gland has been removed should have T3 added to their T4. T3 is the Active Hormone required by our receptor cells in order for us to function normally.

We have to read and learn and ask questions and those who have had a thyroidectomy will respond and say how they were able to get better or are still on a journey.

The first thing to do is get a print-out from the surgery of your most recent blood test results with the ranges - you may have to pay a nominal sum. I pay 30p.

Never take the words 'normal' 'fine' 'o.k. with regard to results if we are feeling awful. Doctors are ignorant and most Endos. It would be good if they could experience what the patient's are undergoing.

When you get your next blood test it should be the earliest possible and fast. You can drink water. Leave about 24 hours between your last dose of levo and the blood test.

I think, whichever consultant/doctor who is prescribing for you should add some T3 to your T4. If they don't agree ask for a Free T3 blood test as you are most probably not converting to T3. Levothyroxine is T4. Our body needs both T4/T3 and some of us cannot convert T4 efficiently into T3. Read about FT3 on the following link.

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

Also you should have had a vitamin B12, Vit D, iron, ferritin and folate checked.

Regards.

[KarBon]

Hi Louise_h81

I had a TT a year ago and although felt great for a while by December I was feeling horrible. I'd been on 150 Levo then reduced to 125 by GP, who even wanted to reduce it again (TSH result)! I was feeling like you, tearful, severely depressed, fat, fatigued, the list goes on. After getting advice on here and GP refusing to give me NDT even on private prescription I took the plunge and ordered my own. I'm now self medicating and shortly will order my first private blood test on new regime. I'm on 1 1/2 grains Naturthroid now but within hours of taking first dose of 1 grain I felt so much better. Nearly 2 months on I'm feeling really well, happy, brain fog has gone, so energetic and I've lost 4 lbs!!!! I'm also taking Vitamin B12, Vit D and Vit K. I know it's a scary thing to do on your own, but don't stay as you are. You don't get better with the GP and their "normal" range. Either ask if you can have T3 added or by itself, or like so many on here, order NDT yourself from abroad. The lovely people on here are so helpful and knowledgeable and have helped me regain me.......

Good luck and get healthy.

[Clutter]

Welcome to the forum, Louise_h81.

Ask your GP receptionist or practice manager for a printout of your recent thyroid results and ranges (figures in brackets after results). Post them in a new question and members will advise whether your are optimally medicated.

Things can be much better when you are on the right medication and dose.

_______________________________________________________________________________

I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[snow31]

Hi Louise.

I'm sorry you are now not feeling great following the thyroidectomy. Please get a blood test done to check levels and post on here for others to see who can give you advice.

I am following you now and your progress with keen interest as I had my thyroid removed 2 weeks ago. Hv been prescribed 125mg of levothyroxine (different makers of different dosage). Also on calcium for moment as levels slightly dropped after surgery.

Hope you start to feel better again soon.

X

[Louise_h81 in reply to snow31]

I had great results straight after the operation, I gues it takes a while to get meds right. I am still on loads of calcium a day as well.

Hope your feeling ok xx

[snow31 in reply to Louise_h81]

I'm on calcium 1000 3 x a day but levels had risen well last week. Not sure how long I will be on them. Had full bloods today so wait and see on those results.

My only sympton at moment is a pain that comes and goes within a few minutes. It intensifies then goes. Have it in arms/legs but not sure why.

Will look into t3/t4 with consultant when I see him. But just hope it all stays positive.

I hope you don't have to suffer to long like this. Please keep at the docs etc as you know how yr feeling and hopefully they will listen to the symptoms and not just results

X

[tiredtanya]

Hi Louise,

I had a thyroidectomy 15 years ago and I agree with all of the other advice you have had. In my case, I have just started T3 which is helping me get over a period of nasty hypo symptoms. There is some research published on Thyroid UK website which looked into rats with total thyroidectomy and it was found that rats with no thyroid needed supplementing with both T3 and T4. NDT will provide you with both hormones as well. Don't worry - you will be well again, its just that you'll have to keep a close eye on things. Post your next blood results on here, and keep your iron levels up.... ALWAYS.

[Louise_h81]

Hi, thanks for your reply. I am seeing a doc next Tuesday and bloods the week after. Unfortunately I can't fast as also diabetic, but will take some of your other suggestions on board. I honestly feel like iv turned the clock back a year to when I was very ill

[shaws Administrator in reply to Louise_h81]

If your doctor or Endo won't agree to giving you at least some T3 to add to T4 you will be forced to buy it yourself. They do NOT know best - the patient does and it is the suffering patient that needs it most. This is an excerpt:-

Dr. Lowe: Indeed, symptoms we diagnose as "fibromyalgia" commonly develop after surgical removal of the thyroid gland. The so-called "fibromyalgia" symptoms of the patient whose thyroid gland has been removed are largely hypothyroid symptoms. The patient’s fibromyalgia symptoms are sustained by doctors (1) denying her the use of thyroid hormone, or (2) restricting her to "T4 replacement" therapy. T4 replacement is an approach to thyroid hormone therapy that’s little better—and in many cases no better!—than being denied thyroid hormone therapy altogether.

I said the patient’s fibromyalgia symptoms are largely those of hypothyroidism. What I mean by this is that her symptoms usually gradually become compounded and intensified by other metabolism-impairing factors. For example, the patient’s continuing hypothyroidism makes it tough for her to exercise. As a result, she loses muscle mass, and this lowers her metabolic rate even further, worsening her symptoms.

web.archive.org/web/2010112...

From same link:-

To learn about the monstrous harms caused by T4 replacement therapy, I encourage you to read our official denouncement of it. Then I strongly recommend that you persuade your new doctor to treat you with unconventional thyroid hormone therapy, as we describe it on various pages here at drlowe.com.

[Louise_h81]

So just back from the docs, apparently here is no medical reason I should be feeling like this. So his suggestion? Fill in this depression questionnaire and then we can get you on some medication to help your moods!! Of course I'm feeling down, iv got diabetes and a thyroid problem that no one seems to take seriously. Sorry for rant, but it's frustrating now xx