Suffering Through, Hoping to Come out the Other Side

[ParisFlower]

They removed my thyroid gland 6 years ago and my life has never been the same. I am taking 137mcg of Levothyroxine. I feel like I am living on a combination of speed and hallucinogenic mushrooms. I have "good" days and even weeks that I feel "normal" and I am walking on air, but, and it is a very BIG BUT, a great deal of the time I feel like my brain in on fire with electricity. The feeling goes through my whole body and everything hurts and my whole digestive system feels like it belongs to someone else. I feel depressed and desperate to escape from the torture. I have become reclusive and unable to work regularly. I began praying for death. I changed my diet, studied herbs and supplements and even started seeing a therapist to deal with my despondency. I stay busy and get out and involve myself as much as I can with projects and people.

My recent visit with my doctor was again not satisfactory. He claims I am hyper sensitive to the medication and offers everything from Lyrica to antidepressants, but I don't want anything to numb my nerves or alter my brain chemistry, I want to fix the problem. I recently stopped taking my Levo 1st thing in the morning. I read that Cortisol levels peak around 8 a.m. and may interact with the Levo. At least I have some time in the morning when I feel better. I still take my Levo on an empty tummy and take it in 1/2 doses throughout the day. I still have symptoms but I am not starting every waking day with brain fire, unable to think clearly and feelings of desperation. The buzzing in my head may never stop, but within 40 minutes of taking my meds the all over electricity starts. A person could go mad, and in fact I thought for some time that I have gone mad. I am not sure how my changing up my dosage times will play out in the long run ( I'll know within 3 months), but I had to do something. I couldn't go on like I was. It is not something other people can wrap their minds around. They think, you look fine, so how can you be so completely miserable. I am grateful for my life, but it is so very hard to live like this and to suffer so.

I am writing this because I don't believe I am alone with these symptoms and hope to touch someone who may be going through similar challenges. I make it so much worse to feel alone.

[Nanaedake]

I have been there, believe me. Praying for death and unable to resolve symptoms with GPs unable to help.

Firstly, post your last thyroid blood test results here along with the laboratory ranges.

Secondly post any vitamins tests here and if none then ask your doctor to test vitamin D, folate, ferritin, calcium and B12. Ask if doctor could also check PTH which is parathyroid hormone. When you have results , post them here with the lab ranges so we can help.

[ParisFlower in reply to Nanaedake]

Thank you so much for replying! I will get those results and post them. I know he did test me last week for various vitamin levels including D, because I was being so insistent for care. I have been doing this alone for so long I am grateful that someone heard. Cheers!

[Nanaedake in reply to ParisFlower]

I know, I was alone too but you'll find help here like I did. Can you tell me why you needed a thyroidectomy? it can make a difference in how to investigate and resolve some of the symptoms.

[ParisFlower in reply to Nanaedake]

I had a huge growth ( non cancerous) that was crushing my windpipe. I had great difficulty swallowing and choked often. My GP kept giving me antacid meds until I showed him the growth was starting to protrude at my throat. He sent me straight away to an Endro Dr. who said the growth was too large to biopsy until they removed it. My GP has been treating me since my thyroid was removed. I am looking for a new doctor, as my symptoms have ruled my life for the last 6 years and it has only now dawned on me that I need to find help on my own.

[SlowDragon Administrator]

Assuming you are in the UK, you are entitled to copies of your own blood test results

Add them here and members can advise

For full Thyroid evaluation you need TSH, FT4, FT3 and also very important to test vitamin D, folate, ferritin and B12

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

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

[ParisFlower in reply to SlowDragon]

Thank you! I just called the office and told them I will pick up all results on Thursday.

[Nanaedake]

One more question. What brand of Levothyroxine are you taking and do you stick to one formulation?

[ParisFlower in reply to Nanaedake]

I was on Synthroid but could not tolerate the blue dye in the 137mcg. I have been on a generic (yes I can only take the same one) for 5 years. The 137mcg are still blue but much lighter color. Maybe it isn't the dye that bothered me, but it was the only thing I could figure out. I really have been going this alone.

[SlowDragon Administrator in reply to ParisFlower]

Some people are sensitive to blue dye

But many of us find we always need the same brand of Levothyroxine. It's trial and error working out which one suits you best

Are you in UK or USA?

[Grumpyoldbird]

You might want to try NDT. I started taking Thyroid-s many years ago after living a half life for 8 years. NHS were useless. Endocrinologist was a twit and more often than not, I know more about it than the doctors. It's cheap enough to buy, usually from Thailand or Canada. No prescription required because it's not a drug. This stuff saved my life. I was on 125 Levo and did a swap for 2.5 tabs but later upped it to 3. Good luck

[janveron1 in reply to Grumpyoldbird]

How do you get Thyroid -s? from Canada? Please reply to janveron1 by private message. Jan

[fibrolinda]

As others have said once we see your test results you can get informed advice. It may be you are just on too low a dose... Or you're not converting t4 to t3... One step at a time 🙂 Yes eventually you may need to try self medication of t3 or NDT, maybe. Private tests as slowdragon advised cost less than £100 and can be done at home by finger prick, and give a fuller picture, I do these myself. lets see what your GP has tested and the results. Chin up kid you've come to the right place 🙂