Chronic fatigue

[Asunnybeachday]

Hi! I had a full thyroidectomy due to cancer in May 2017 ( 10ish weeks ago). Since then my dosage went from 100 to 112 to 125mcg of levothyroxine. I've been taking 125mcg for about 3 weeks.

My levels haven't been tested since switching to the 125. However, prior to switching, my doctor stated that my level were only 0.05 off where it should be.

That being said, I am still exhausted. Every day, I wake up so tired like I didn't sleep. I swear I did. Also, my memory is the worst. It truly is a problem.

I am a student in an extremely rigorous program. We return to school in 2 weeks and would love to feel more normal before I return.

Please help me. I becoming desperate and need some advice!

[shaws]

Welcome to our forum and I feel so sorry for you. You've had your thyroid gland removed completely and then left to 'get on' with it yourself along with disabling symptoms.

Make an immediate new appointment for a blood test. We have to have follow-ups every six weeks with a blood test and an increase usually until we feel much better and I shall give below some information. I shall also say that the doctors and endocrinologists appear to be the people to avoid if you want assistance. That's why we have so many on our forum. We have to read, learn, and ask questions on the forum and in a few weeks will know more than most doctors.

First Blood tests always have to be at the very earliest, fasting (you can drink water) and if taking thyroid hormone replacement allow a gap of approx 24 hours between last dose and test and take afterwards. This helps keep the TSH at its highest point as it drops throughout the day.

You should request TSH, T4, T3, Free T4, Free T3. (the doctor or lab may not do so as they believe TSH and T4 are sufficient). Not so but you can get these tested privately if necessarily. Ask for B12, Vit D, iron, ferritin and folate to also be tested. We are usually deficient and everything has to be optimum.

Always get a print-out of your results with the ranges for your own records and you can post if you have a query.

My personal opinion and I have a thyroid gland, is that someone who has no gland at all should be given a combination of T4/T3. I bet if you do a FT3 it will be low when it should be towards the top of the range.

Also thyroid hormone replacements should be taken on an empty stomach with one full glass of water and wait about an hour before eating. Food interferes with the uptake and also avoid tea/coffee for a few hours. Caffeine also interferes.

Don't worry members are very helpful, particularly the ones who were left out-on-a-limb.

[Asunnybeachday in reply to shaws]

Thank you for you reply. I was thinking I probably should go get another test done. I will call today about getting one done.

[shaws in reply to Asunnybeachday]

Yes, we have to look after ourselves as best we can, with support. Otherwise we'd not get anywhere at all and be permanently unwell and be given other prescriptions for the symptoms instead of a decent dose of hormones. Remember it has to be the earliest etc.

[shaws]

p.s. the doctor saying "levels are where they should be" is talking nonsense. TSH should be 1 or lower or suppressed. I believe those who've had thyroid cancer have to have a suppressed TSH.

[Asunnybeachday in reply to shaws]

Oh good to know! I know that even if my levels are "correct", I still am not at where I should be. I appreciate your help!

[shaws in reply to Asunnybeachday]

Before levo and blood tests etc., we were diagnosed upon clinical symptoms only and given NDT (natural dessicated thyroid hormones) until we were symptom free.

[Asunnybeachday in reply to shaws]

Is NDT like Armor(sp?)? My mother is on that and she swears by it. She is hypo though and never had cancer.

[shaws in reply to Asunnybeachday]

Yes it is the same as Armour. Thousands swear by natural dessicated thyroid hormones.

You need thyroid hormone replacements now and NDT is thyroid hormone replacements. NDT has been in use in various forms since 1892 until levothyroxine and blood tests were the replacements.

The following link will reassure you.

drugs.com/comments/thyroid-...

[greygoose]

It sounds like your endo is dosing by the TSH, and believes there is a fixed point at which you should miraculously become well. It sounds like your endo knows nothing about thyroid.

The TSH is a very bad indicator of thyroid status, and should not be used to dose with. He should rather be looking at your FT4 and FT3.

And, there is not fixed point to aim for, the point to aim for is when you feel well, whatever the blood test says. We're all different, and all need different amounts. And, you need what you need, not what your endo thinks you should need! This man is never going to make you well, so find someone else.

[Asunnybeachday in reply to greygoose]

I was told she was the best, but haven't seen it yet. I will get my T3 and T4 checked today.

I am not afraid to leave her and I will go find someone else if she doesn't fix me!

[greygoose in reply to Asunnybeachday]

Yes, I was told the useless endo I saw was THE best. Turned out she was the only one, so there was nothing to compare her to! Well, all I can say is, if yours is the best, god help the patients of all the others!

[Helsan]

Hi I had a total thyroidectomy a few years ago and the operation itself takes quite some time to recover from. My consultant put me on 125 lego straight away and initially for me that was a good dose. After a few months I never felt well. Had fatigue, scaly skin, split nails, hair falling out and bowel problems. I also had lost of joint pain but as I have osteo arthritis its hard to know which is which. Taken me until now to get T3 from a private endocrine who looked at my symptoms and tested for TSH T4 T3 and reverse T3. The previous Consultant balancing my meds was actually the surgeon and he kept saying I couldn't have any more meds as my results were perfect! He did lots of bloods but only TSH and thyroid. Do push earlier for better care but also remember you have had a major op and the effects of that last a while. Do you have any of these other symptoms as well as fatigue? Would it be possible to postpone your course for a short time due to ill health and come back in where you are at present? Rest a lot and be kind to yourself. I had huge memory problems close to the op but these did improve as the body recovered from the op.

[Asunnybeachday in reply to Helsan]

Hi! I am 2 semesters from graduating from a dental program. I would have to restart the whol program if I decided to leave. So that's not really an option.

I do have the exhaustion, scaly scalp, and bowel issues. When the exhaustion gets really bad, I will begin to have join pain in my arms and legs.

I did call today to see if I could get my T3 and T4 checked. I am awaiting a call back. If she won't check it, I will find someone who will.

[Helsan]

Good Luck I hope you do really well. Hopefully they can introduce a bit of flexibility so you can rest a bit more between lectures. I hope you get sorted quickly.

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As you need a quick solution, the only sensible option for you is to get some NDT (Thyroid-S or Thiroyd) from Thailand which is highly likely to give you some sort of decent health to complete your course. Takes a couple of weeks or so in the post to get it.

That was the solution for me and has been for countless other people. Levo is simply the wrong medicine if you no longer have a thyroid gland. Perhaps for some it may be, but I have my doubts.

You will be most unlikely to get any synthetic Liothyronine from your doctor, and certainly not in any reasonable timeframe, to substitute for a part of the T4 you currently take.

NDT will certainly not poison you, the only problem you may encounter is taking too much, as you would have to self-medicate on a trial and error basis.