Thyroid levels re anxiety

[Cbreeze1961]

I’ve had problems with a cycle of anxiety feelings. I feel well for 3 weeks then ill for 2 to weeks, this started about 3.5 years ago when I was put on cabizamol. I am on a host of anti depressants and anti anxiety drugs. I felt a lot of my problems related to thyroid problems and in august last year had total thyroid and parathyroid removed. Both were very swollen and were suffocating me I was The parathyroid was diseased and they found the thyroid had cancer.

I still believe that the surge of anxiety relates to level of TSH. I feel really well then one day I just wake up feeling terrible can’t get out of bed and feel so terrible and emotional

Levels recorded 25/1/23

TSH 11.5

T4 1.6

I’ve had bloods taken 24/2 but had injections two days prior to encourage any remaining thyroid cells to become active so that radioactivity iodine medication taken after the bloods can zap any stray cancer cells.

TSH 150

T4 1.5

T3 4.5

i appreciated the last readings will be affected by medication.

What I am wondering is does a high TSH mean that thyroxine should be increased and I also understood from previous e mails that weight has an impact on the amount of thyroxine that should be taken.

Does anyone else suffer from a cycle of symptoms I am desperate to break the cycle and feel better.

I did feel better initially after removal of thyroid and parathyroid I had 9 fantastic weeks , just want too get rid of this awful feeling

any advice welcome I’m getting desperate

[PurpleNails Administrator]

most feel well with TSH around 1 and FT4 top third of range & FT3 at least half way.

Lab ranges vary between labs so always needed.

A high TSH means you need an increase. This is usually by 25mcg per day and retest of function after 6 weeks unchanged dose.

What’s your current dose? Do you always have the same band?

Levo wont work well unless key nutrients (folate ferritin B12 & vitamin D are optimal). Optimal is not same as anywhere in range.

Have they been tested?

[Jazzw]

Goodness, you must feel terrible. No thyroid and basically very little in the way of active thyroid hormone on board.

I take it whatever they gave you was intended to raise your TSH (let’s hope so!) but they must know that you can’t manage on low levels of thyroid hormones for long??

When are you due to have another appointment with the doctor/endo/specialist?

[Cbreeze1961 in reply to Jazzw]

hi not due to see oncologist who is now responsible for thyroid levels until 23/4 have contacted his secretary who is lovely to be told he is on holiday for two weeks. she is going to speak to stand in consultant but not sure he will change anything I feel so ill. I am having full body scan on Friday at hospital. I might ask if I can get bloods done when I am there and see if antibodies or toxic levels can be done

[Cbreeze1961 in reply to Jazzw]

hi thanks for reply not due to see oncologist until 23/4 to find out results of full body scan after Radio iodine treatment I had last week for cancer of thyroid. I’m in isolation until Thursday I’m am just managing to get through each day. I’ve contacted oncologists specialist but he is on holiday for two weeks. I have seen private Endrocrinologist I think I will need to get in touch with him for advice feel so ill

[Jazzw in reply to Cbreeze1961]

I think that would be a really good idea.

Really hope you start feeling better soon xx

[Cbreeze1961 in reply to Jazzw]

thank you Jazzw I think I am going to up my doze by 25mg to 150 from what I’ve heard I’m well out of sink can’t be any worse off than I am x

[Poniesrfun]

Hi breeze ~

It sounds like you received Thyrogen injections to raise your TSH for RAI treatment. Generally they want you to stay on your regular dose of levothyroxine and not make any changes and retest in around six weeks. Because they found cancer you need to have your TSH kept low (suppressed) – initially it should be around 0.1 to 0.5. So which ever doctor was monitoring your levels apparently doesn't understand anything about thyroid cancer or they never would have let your TSH get high (11).

The very high levels you had after the injections aren't anything you can use to guide you - other than it may take a while for your hormone levels to settle down. If the levo dose you were taking is too low (and probably is from your January results and your symptoms) you should push to get retested in three weeks instead of six.

They also need to be checking your Thyroglobulin levels every 3 to 6 months initially.

Patti in AZ

[Cbreeze1961 in reply to Poniesrfun]

Thank you for reply I feel so Ill I just hope they can sort me out quickly x

[Cbreeze1961]

I feel more than dreadful it’s an ongoing nightmare I say with anxiety just burning up inside but dreadfully feeling all the time. I can hardly get out of bed and when I do hardly able to function which is a major problem when you live alone and have no family close for practical support. I cannot get to right person to help but am so desperate Ill I just don’t know what to do now.

I am on 125mg mon to thurs and 100mg fri to sun Levothyroxine been on it since August 2022 when my thyroid and parathyroid were removed.

I was told that my last blood tests were fine except for thyroid

I am a novice regarding all the bloods etc. I have never been well since they started me on cabizamol my thyroid problems were diagnosed in 2019

My husband died in August 2018 and they put my anxiety down to the bereavement and I was put under mental health care which I am still under but why would there be a cycle of symptoms and why would I wake up feeling so Ill one day and two to three weeks later wake up and the systems have disappeared overnight

I knew my thyroid was causing me problems and luckily paid privately to have it sorted as it was suffocating me and was cancerous I still think it is a physical thing to do with my thyroid just wish they would listen to me