What a miss I am after a year ago having a tota... - Thyroid UK

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What a miss I am after a year ago having a total thyroidectomy .... Quality of life before operation was 100% now one year later is at 10% .

Matgot profile image
12 Replies

Symptoms.. fatigue, constant ,foggy mind, no energy to go to exercise at the gym , pulse rate in 60 , cold at times other times have hot flashes , wake up with pins and needles in both hands , pains in all joints , losing hair , hair brittleness,have gone to 3 endocrinologist with no results ... on synthroid medication .. at times have nausea in the morning ... feel like I am almost dead ... feel my t4 medication isn’t converting to t3 .... no one to help me ... I am at a loss ... if someone out there could help me I would appreciate and be so thankful .... God bless you

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Matgot profile image
Matgot
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12 Replies
greygoose profile image
greygoose

Well, could be that you're just under-medicated. Do you get copies of your results? If not, the first thing you should do is get copies. You need to see if the doctor is doing the right tests, and what the actual results are. Otherwise, you're just groping in the dark.

May I ask why you had a TT?

Nanaedake profile image
Nanaedake

It could be undermedication or it could be a deficit in nutritional levels or both. Have you got blood test results for key vitamins such as B12, folate, ferritin, vitamin D and calcium? Do you know if your parathyroid glands were removed or damaged during surgery? Calcium deficiency may not show up in blood tests but pins and needles in hands should trigger the doctor to check it out.

Pain in joints could be low vitamin D which may go hand in hand with low calcium levels and could be exacerbated by loss of parathyroids so perhaps ask the doctor some questions around how they would check this out and how you can find out what the source of the problem is.

The other possibility is that the thyroid medication you are taking doesn't suit you in which case you could try a different formulation.

If you are taking other medicines, prescribed or not you need to consider whether they are causing side effects.

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to get TSH, FT4 AND FT3 tested plus vitamin D, folate, ferritin and B12

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

Come back with results and ranges once you have them

Christinah61 profile image
Christinah61

Hi Matgot just read you message ... ive got to say your symptoms sound just like mine used to ... yes used to... I was really poorly bedridden with those symptoms for a good 3 years and thought the same as you, but after advise from this forum I did the blue horizons finger prick test got my results and then started with addressing all the vitamins I was deficient in taking them daily, going gluten free, keeping a good diet. I take nature thyroid instead of levo, 3 grains per day and ive got to say that once I started taking B12 within 2 days my dizziness and feeling off balance started to go, the nausea was also helped with my iron and folic acid being back on track, ferritin levels also were back where they should be and the brain fog just seemed to go..feeling cold and the hot flashes I still get occasionally but not half as bad...ive always suffered with very dry hair and noticed that I was loosing a lot of hair but its not so bad now, I also take selenium which I know has helped me very much

and also magnesium which I take a few hours before I go to bed and this has helped me so much with sleeping ..used to be awake all night but now I sleep great the odd night I might have a problem but not like it used to be. its taken 18months to get this far but the reason I replied was keep going it will get better, there are not quick fix's with thyroid its a slow process.

Best of luck to you.

Christina

madge1979 profile image
madge1979 in reply to Christinah61

Great Reply Chtistina ... and will help many others too..

Stay well

Mx🌹

Sus64 profile image
Sus64 in reply to Christinah61

This is helpful advice, may I ask how you got your iron and ferritin back on track?

thyr01d profile image
thyr01d in reply to Christinah61

Just a little addition to Christina's great reply ... we have to be careful when we take vitamins, some, like magnesium and iron, must be taken 4 or so hours away from thyroid meds and we have to avoid food and caffeine for an hour either side of thyroid meds and that sort of thing. It just could be something like that, that you are unaware of, interfering with your meds.

Christinah61 profile image
Christinah61 in reply to thyr01d

Oh yes thyr0ld I know only to well.... been taking thyroid meds now since I was 15 and I am 62 now so I know what time to leave either side of thyroid medication, but thank you for your message and kind thoughts have a good weekend.

C

AlisonMox profile image
AlisonMox

You need to make sure your surgeon and endocrinologist are communicating... check your levels it seems your not on the correct dose of thyroid replacement therapy.

pennyannie profile image
pennyannie

Believe most people on here, reading of your health issues will identify with much of what you have written. You need to read up all you can - sadly the medical profession are not as clued up as you might think - get copies of any blood tests that have already been carried out and let the amazing people on this site talk you through the procedure of getting your health back to an acceptable level.

It's not the walk in the park, you might have been promised, sometimes it's even hard putting one foot in front of the other, but given the time and knowledge you will find your way back , you might even get to go on a swing.

Take control, you will know best when you know what you can do to help yourself.

Badboomer profile image
Badboomer

Sorry to hear you are not well. Prior to my thyroidectomy all of my joints were inflamed and I could barely walk. I never discussed this with any doctors. I figured one thing at a time. But after surgery I recovered pretty well. It has been four years now and I feel OK. I wonder if you may have something else going on. Have you been checked for Lyme disease?

Debeee profile image
Debeee

Hi , I had a TT four years ago & after a year of being on T3 only & treatments was moved onto T4 levo only & can fully identify with all your symptoms. My blood results were always “in range” but i felt awful. I was put on a t3/t4 mix & now feel fineX

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