Obsessive thoughts and ongoing battle with recovery after total TT

Hi all new to this forum only my second post however have already got so much help from the members. I had a total TT 11 months ago. The recovery after has been hard. However it's more about the way I am feeling now. Currently on 100/125 thyroxine on alternate days I am 106kg male. Folic acid 5mg per day as it was low. Latest bloods done this week show iron B12 and everything else is normal. I also had a B12 jab this week. My TSH is 0.18 T4 15.7 T3 4.7. Of course the GP says that my dose is correct. I constantly have a racing mind feeling nervous very tired muscle ache dry skin itching eyes I wake up with a racy heart. I need to sleep at least 12 hours minimum after which I am still tired. I played hockey yesterday and couldn't last the pace felt like I run out of gas. Can't seems to lose weight. I have had two really bad weeks. I am a bit confused if my symptoms are over or under seem a bit mixed. However I have always felt that my thyroxine dose is to low for my weight and size. But also can't seem to tolerate high dose of thyroxine. I am doing my round of the doctors however I feel that they can't really help as the bloods are fine. This puts them in the land of guess work. My question is that if I am to listen to my symptoms where do go from here. Do I increase my or decrease my thyroxine. I do all the good practice I don't eat or drink for at least two hours after taking meds don't take any other meds for two hours. My diet is pretty good avoid gluten etc. take 2000iu vit d. I have tired everything my endro was doing bloods test every month and all was coming back ok. Have had allergy adrenal stool ECG and many other test all come back ok!!! I run my own business and only gods knows how this has managed to carry while I have been ill for the last 8 years. Is life going be like this for the coming years? Might need to retire only 44 years of age. Look forward to your advice and support.

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  • The unfortunate thing about this illness it that being over medicated can bring on the same symptoms as being under medicated.

    Your racing heart, feeling anxious and racing mind are all saying you are over medicated but your battle with your weight, lack of energy and dry skin etc say you are under medicated.

    Although you don't give ranges for your thyroid test results (which is always very important as ever lab has different ranges) I would say your FT4 and FT3 are low, which means you are not converting the levo you are taking into the active T3 your body so badly needs.

    You say you have had iron B12 "and everything else" tested and they all come back normal. A ferritin (iron the body has in storage) of 30 can come back "normal" according to the NHS ranges but a thyroid sufferer needs to have a ferritin level of over 70 for your body to be able to convert the T4 you are taking into T3. I would love to see all these "normal" results so could you ask the receptionist to print them all off for you and post them on here for people to comment.

    I would say you are on to much levo due to your racing heart and other over medicated symptoms, plus a TSH of 0.18, but you are still getting lots of under medicated symptoms because your body is unable to use the levo you are taking for some reason or another. Now you have got to find out why. Some people just cannot convert the levo into T3 so other meds have to be given but lots of people find it is there vitamins that is stopping this from happening.

    Get copies of ALL you recent tests and post on here for advice.

    Hope this helps.

    Moggie x

  • Just checked my ferritin level is 381 and the lab ranges are 22-275. It's obviously very high what does this mean ?

  • Forgot to add this site which is very good and will tell you why exercise and dieting can badly effect your conversion as well as why low iron does the same.

    Have a good look around it and see what you think.

    nahypothyroidism.org/deiodi...

    Moggie x

  • Thanks moggie. I have the blood test report and will check the ferritin level. Also is my t3 low at 4.7? I have t3 pills at home.

  • If you have the report at home you will be able to post FT3 and FT4 ranges for us to look at.

    High ferritin can mean a lot of things but I am amazed that your GP has not discussed this with you.

    Have a look at this from the labtestsonline site, which is very good for info, regarding high ferritin levels. I would be making an appt with my GP pronto. Your high ferritin level could be the cause of all your problems so I would see your GP and if he is unhelpful I would ask for a referral.

    labtestsonline.org.uk/under...

    Moggie x

  • Thanks I will see the GP ASAP. T4 is 15.13 ranges are 9.02 to 19.05 tsh 0.18 range 0.35 to 4.94 t3 4.7 ranges are 2.8 to 6.6.

  • Do any of these symptoms ring any bells to you (which I think they might).

    High iron

    Chronic fatigue

    Joint pain

    Abdominal pain

    Liver disease (cirrhosis, liver cancer)

    Diabetes mellitus

    Irregular heart rhythm

    Heart attack or heart failure

    Skin color changes (bronze, ashen-gray green)

    Loss of period

    Loss of interest in sex

    Osteoarthritis

    Osteoporosis

    Hair loss

    Enlarged liver or spleen

    Impotence

    Infertility

    Hypogonadism

    Hypothyroidism

    Hypopituitarism

    Depression

    Adrenal function problems

    Early onset neurodegenerative disease

    Elevated blood sugar

    Elevated liver enzymes

    Elevated iron (serum iron, serum ferritin)

    I would be going back to my GP and asking for a referral as I think he may be out of his depth.

    I have just read a really complicated paper, which seems to be saying that removing the thyroids of rats elevated their ferritin levels. Sorry I didn't understand it all but it has something to do with T3 and how T3 binds with other things so I wouldn't be taking any extra T3 if I were you but I would be asking to see an endo.

    If you want me to link you the paper I will but it is very heavy reading.

    Of course high ferritin levels can also be a sign of inflammation but whatever is causing it I think you may need specialist help.

    Moggie x

  • Thx mog.

  • My husband was diagnosed with Hashimotos and had over range Ferritin. Docs were alarmed and sent him for a colonoscopy which was fine. Once he started taking T4 it reduced - so was possibly caused by the inflammation in his thyroid.

    Moggies has given good advice.... You say your B12 was normal and yet you had an injection - so could it be that it was low/normal ?

    Hope you soon feel better....

  • Just a thought down the line if all other avenues are exhausted. I was on thyroxine for many years and I had a mixture of hypo - extreme fatigue, weight gain, pain etc and what I thought were hyper racing mind, couldn't think and generally feeling too fast and trembling. In my case thyroxine was making me toxic and I wasn't seeing the benefits of it as I was not converting. I'm now taking a different combo of pills and I'm on the mend.

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