Seeing Endo first time since total thyroidectomy anything I need to say or request....

[squiddie82]

Had a total thyroidectomy in September 17 and was put on 100 mg of levothyroxine had bloods done at 6 weeks as requested by gp was told slightly overactive (didn’t get results then but am going to get them out of interest) so reduced me to 50mg of Levo been on that dose ever since but haven’t been feeling right so had bloods done in December and TSH was 39.83 (0.27-4.20) range serum T4 11.8 (12.0-22.0) didn’t feel great but got told as Gp hadn’t flagged results to get on with and retest in 6 weeks just had results back and this time got full bloods which are pictured below. TSH has increased so down to a lot of pestering the receptionist she got a message to the Gp who increased dose back up to 100mg. I’m due to see Endo on Friday which is the first time since my op. Is there anything I need to push for or say I feel so ill and feel alone Gps don’t seem to take any notice of my bloods and feel like I’m fighting to get the right doseage. Sry for the long post but thought someone might have some good advice for me as I only knew to request my bloods and to get full blood count from this site. Thank you in advance.

[Diamond1955]

I wish I could wave a magic wand for us all to feel better. I take 100mg Levo daily but still feel tired, sweats are awful on and off, moods not always great. I have found exercise is good even when I don't feel like it and sometimes I can do well other times it is just an effort.

GPs are not always willing to listen and do have the idea that we should just put up with it. You are lucky you have been referred to a consultant. Ask them about alternatives, diet, supplements etc. You might find that some foods make you feel better than others - fruit, veggies, nuts. I'm not a vegetarian but I do find I feel better with what I class as clean foods. I think white bread makes me sleepier so always try brown, wholemeal or seeded bread.

Let us know how you get on and I',m sure others will give you some great advice on here too.

[Kell-E]

It sounds like GP is dosing by TSH, but can't say for sure without the first results.

[SlowDragon Administrator]

Your GP doesn't understand Thyroid. You need very fine adjustments. Not cut from 100mcg to 50mcg

You are now extremely under medicated

Dose needs increasing in 25mcg steps until TSH is between 0.2-1.0 ideally

FT4 towards top of range and FT3 at least half way in range

Retesting 6-8 weeks after each dose increase

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

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

please email Dionne:
[e-mail]

Professor Toft recent article saying, T3 may be necessary for many

Note especially his comments on current inadequate treatment for patients post RAI or thyroidectomy

rcpe.ac.uk/sites/default/fi...

Your vitamins are too low because of being inadequately medicated

Typical post with Low vitamins due to under medication and detailed supplements advice on how to improve

healthunlocked.com/thyroidu...

If you had Graves' disease you may still have high antibodies. Look into gluten free diet

[bardak]

Definitely find a better gp, the one you are using is incompetent and risking your well being. Honestly what is the matter with them? Someone ought to remove his/her thyroid. It makes me angry!

[jgelliss]

squiddie82

I'm sorry that you needed to have TT . Wishing you wellness . You did very smart for joining this great forum . You will learn very sound valuable information from the members on the forum . You will also and get inspired and empowered .

My first mistake was after my TT was to put all my trust in the Dr's . BIG MISTAKE . I was truth be told in the dark . Forums like ours was not around back then . And I new very little if anything about my thyroid journey .

I would very much advice you to read *SeasideSusie's* Excellent information on the nutrients that are extremely valuable for us to make our thyroid meds work efficiently for us .

Our thyroids once made T3 and T4 . I wish I would have known then what I know now . Please ask your Dr to try some T3 with your T4 or NDT with your T4 . Only YOU would know and determine what works the very BEST for you . Don't let your Dr tell you that T4 gets converted to T3 . It does to a small degree . By some more than others . At first T4 worked well for me at least I thought . I didn't know better . Till symptoms arose like palpitations insomnia sweating weight issues high blood preasure anxiety panic attacks jaundice with time and later developed fatty liver (NASH) muscle cramping . I had to learn the hard way that this was connected to my T4 only . I learned that I was not from the better converters . Ask for labs with FT3 FT4 TT4 TSH for starters . My Dr's would dose me by my TSH only for suppressions . Learn to know your thyroid ranges . Journaling my symptoms helped me . Learn to trust yourself what your body is communicating to you . If your Dr does not understand you or is uncooperative fire him/her . Ask around for a friendly T3/NDT advocate . Read as much as you can don't be afraid to ask questions . You must learn to trust and not be afraid to advocate for yourself . No ONE will want the BEST for you except YOURSELF .

I later found *SlowDragon* on this GREAT FORUM talking about going GLUTEN FREE the benefits we derive from it . It's great . Please read SlowDragons Excellent articles on GLUTEN FREE .

*Clutter* will be very happy to help you with your thyroid doses as is *Shaws* and the great *greygoose* . I learned so MUCH from all of them . They are chuck full of information and are tireless and very giving of themselves . You will go from strength to your Dr after reading and asking your thyroid concerns with all of them . It goes without saying the members are most valuable . You all help us NAVIGATE OUR THYROID JOURNEYS .

Wishing you to find your optimal real soon !!!