levels now sorted but y still depression?

[fattynearing40]

im now on 100 levo but my mood swings are terrible, please some1 have a answer as I feel like im going crazy.

Thanks

[Jane104]

Do you have any recent blood test results? You may not be on an optimum dose. If you can post your results here, along with the lab ranges, someone will be able to interpret them for you.

[elements]

Do you feel tired? that might contribute to this depression, i am one a 100 and i feel crap - my memory is very poor and i am exhausted all the time and they can't put me on a higher dose, as it can lead to burn out.

[marram in reply to elements]

Did the doctor tell you that it could lead to burn out? What does he mean by burn out?

Did you have your latest blood test results? If you are tired and don't feel well, It sounds as if you need more than 100mcg.

Before the TSH ruled the world, people were on 200 to 400 routinely, and were perfectly well.

[elements]

yes i am managed by a cancer centre and after having treatment i was put on 200 mcg and then they lowered it to 150 mcg after a period of time. I am now on 100 mcg and i had complained saying it was too low and i found it hard to function daily with my memory was going and not finding words to say when i would be talking to someone and also making cups of tea and forgetting i had made them and then only finding out maybe a second later when i'd be over at the kitchen counter about to make another cup of tea and only realising then. Anyway i had been told never to go on a higher dose because it can lead to burn out and the cancer centre consultant told me that. Burn out is when your memory goes and your cognitive functioning is non existent. I been to another hospital since then and they ran all sorts of checks and they have a low suspicion i might now have hypoadrenalism which under stress can lead to a comma or death - so i cant say for sure what i have as i honestly thought i had ME but they just don't listen or don't believe that condition exists but either way i had been taking all the meds and even vitamin d as it was very low at 7 the gp said and she told me it should be higher like 70 i think she said but i have been taking all this and my vitamin d and calcium is still low. I still feel crap and none of them can tell me why my memory is going but i think i have been burnt out from higher doses of levo in the past as i was on a higher doses of 200 mcg for over a year and now i think i have ME from it.

[galathea in reply to elements]

Burn out? Ask them to explain exactly what they mean and the mechanism for it. Keeping you on 100 mcg of levothyroxine when you have had thyroid cancer is beyond belief. It's not likely to keep your tsh suppressed, or make you feel better and tbh your endo should be summoned to a fitness to practice hearing, as he plainly doesn't know what he is doing.

Me or fibromyalgia is thought by some to be a result of treating with levothyroxine only in the hope it will make people better. You may be low on free t3. And this will exacerbate any adrenal problems.

What is the consultant proposing to do about your adrenal function?

G

[marram in reply to elements]

It is scandalous that they are not giving you a TSH-supressive dose of thyroxine. It is essential that your TSH be suppressed after thyroid cancer. Dr Toft wrote in his book 'Understanding Thyroid Disorders' that '..patients will need to take thyroxine in slightly higher doses than normal'

The reason that the TSH has to be suppressed is to prevent recurrence of the cancer. I have no idea where they get this concept of 'burn out' I have never actually heard that term used before in connection with the thyroid. Cognitive problems are associated with low thyroid levels, not high. I think your consultant may know about cancer but nothing about the thyroid.

If they are suggesting you might actually be over-medicated, then they should be testing your thyroid hormone levels.

ME is a diagnosis which is amazingly common in patients with under-treated thyroid conditions and in a large percentage of cases it goes away once the patient is on the correct and optimal treatment.

You certainly need to optimise your vitamin and mineral levels.

[elements]

@ galathea, i am having blood tests every 4 weeks and they have me on 2 tablets of calcuim and 2 tablets of vitamin d thats it..and tbh its all above my head. But like i said the endocrinologist consultant was running al sorts of tests as the gp thought i might be diabetic or something but the endo thought i might have hypoadrenalism but he really suspects i am sufering from hypothyroid whatever its called. I have taken the tablets and still feel really crap i cant stand it - its a living hell! The cancer centre i am going to arrange an appointment with them to see what they say about this.

[elements]

What dose do you think i should be on then of levo?

[marram in reply to elements]

Sorry to ask, but is it thyroid cancer you have had, or some other cancer? we are all assuming it is thyroid. Is that right?

[elements]

@marram yes i had thyroid cancer and both glands taken out in 2009 and radiotherapy in 2010 two doses of that but my cancer was a new one related to my FAP or more commonly known as gardners syndrome. ihave been managed by the cancer specialist since 2010 he gave me the doses of radiotherapy but i had another specialist team who done my surgery. But i have not seen my cancer specialist for a while but just had bloods taken at the GP's surgery and passed onto the cancer specialist - i didn't know all this stuff til i came on here today. But everyone thinks i am making things up as when i talk to these people i forget what i have said previously because i cant remember anything - my daughter thinks it is getting worse and i nearly got hit by a car the other day as i couldnt concentrate when crossing the road if i try and concentrate i get a terrible pressure barring down from the top of my head and it causes headaches. My concentration is very bad and i am fed up with people telling me to concentrate when i cant because of the fog in my brain. Sorry i couldn't reply sooner had to sleep was too tired been in bed now since 7pm and now its nearly 2am all i do is sleep around the clock and i have no life at all. I am at my wits end with it all.

[galathea]

You need to get the results of your blood tests, specifically tsh. Free t4 and free t3. . Post them on here and we can work out what might be happening. You are entitled to have all of your results and the doc has to giVe them to you..

A more realistic dose of levo would be around the 200 mark, but people take more than this.....

Did you feel better on a higher dose?

G

[elements]

i do remember taking the tsh suppressant during my earlier years being treated but that stopped not long after.

[elements]

when i was on a higher dose i was functioning better but found it hard to switch off and sleep. Life was better on a higher dose of 200 mcg but its been so long you wonder what is the best life can get. i will post my last communication if i can find the letter from the cancer specialist. many thanks

[elements]

the last letter i had was asking me to arrange an appointment it says "they would like to see tsh suppressed in the levels 0.1-0.3 but with you in the past it has been difficult to get tolerable levels of thyroid hormone that can achieve that and sometimes we have to accept a less perfect suppression of the tsh".

[Jane104]

@Fattynearing40 - If I were you I'd repost your question with your results; your post seems to have been hijacked!

[elements]

sorry about that.

[elements]

found the endo report i got this week.This is not the cancer specialist team i normally get to see who monitored me but another team with another hospital - they ran tests and state my thyroglobulin was <1 ng/ml with negative thyroglobulin antibodies. vitamin d at 17nmol/I ; calcium of 1.75 mmol/l ; free T4 is 20.3 pmol/l and tsh 1.09 mU/l. I havent got a clue what this all means but it is suggesting that they will advise me on my thyroxine dose. The endo specialist has advised my gp to give me calcitiriol 0.25ng b.d and adcal D3 two tablets twice daily of both for the hypocalcaemia and have 3-4 weekly monitoring of bone profile and vitamin d.