Doc says I'm over-replaced - what do you think?

[fuzzlebug]

After 18 months of seeing different GP's within my practice and presenting with hypo symptoms and blood test results showing I am hypo and being told 'your results are borderline, we'll watch and wait', I finally saw a GP who was willing to treat me as my TPO antibodies were high.

So, in January I was started on 50mcg of Levothyroxine.

This was great as I started to feel so much better, most of my symptoms seem to magically disappear.

At 8 weeks I booked another blood test and follow up appointment with my doctor only to be told that I was over-replaced and he was cutting my dose back to 25mcg.

He did mention though that I may need to up my dose again slightly by alternating 25/50 to get an average dose of 37.5.

The thing is, since that appointment, as I had some 50 tablets left over, I have been alternating them 25/50 like the doc mentioned and I have found my hypo symptoms returning gradually after 1 week.

I'm at a loss now and don't really know if I should keep going with the 25mcg dose (that's all I have left now) for another few weeks until time of the next test or if I should go back sooner perhaps only to be refused my previous dose of 50mcg although it made me feel much better.

Test results on diagnosis: Test results after 8 weeks on 50mcg:

TSH 6.35 (0.35 - 3.5) TSH 0.03 (0.35 - 3.5)

FT4 12 (10 - 25) FT4 22 (10 - 25)

T3 testing is not an option.

Would appreciate anyone's thoughts or advice on this?

[shaws]

50mcg is probably too low for you - ignoring the TSH altogether. This is a link and cursor to the question dated November 20, 2002 to see the consequences of too small a dose. There are other topics which may interest you at the top of the page but some links within these may not work.

web.archive.org/web/2010122...

[fuzzlebug in reply to shaws]

Thanks shaws for your reply and link.

Certainly some interesting stuff in there.

Unfortunately, whether my doctor would be willing to ignore TSH altogether, let alone prescribe more thyroxine, is another matter.

[helvella]

Did you take your levothyroxine before your blood test?

Rod

[fuzzlebug in reply to helvella]

I usually take my levothyroxine at night and I did not take the tablet the night before my test.

My test was at 9am.

[helvella in reply to fuzzlebug]

Well that's one idea well and truly shot down.

[fuzzlebug in reply to helvella]

Lol, sorry. Thanks for trying though.

[ravenhex]

Not sure if it helps or not. My daughter takes hers at night too. Her GP tells her to not take it the night before her blood test and to not eat past 6-8pm. Wonder if its something you can do?

I never take my levo before a test in the morning and mine I always done starved.

[fuzzlebug]

Thanks ravenhex.

I'd not taken my tablet the night before the test but didn't know about not eating.

I've never been told to fast before a blood test but I'll remember this for next time.

[Mumtoboy]

If your hypo symptoms are returning then common sense would say that 37 is not enough, regardless of what your blood tests may or may not show when you have the next test. Did you feel well on 50? I'm no expert but I would prefer to stick at 50 if I was you because your blood rest results on 50 looked good. Or maybe you need a dose between 37 and 50? I'm wondering if this is possible?

[fuzzlebug in reply to Mumtoboy]

Mumtoboy, thank you.

I completely agree with this and yes, I did feel well on 50. (As strange as it sounds.)

I did wonder if it was possible to come up with a dose between 37 and 50.

The only way I can think of (and I will be suggesting this to the doc) is the oral solution recently available. thyroiduk.org.uk/tuk/treatm...

I think this could be adapted to provide a dose of 40mcg for example, as a trial perhaps.

Although I'd like to be on the correct dose with my symptoms alleviated, I would also like to work with my doctor and try all other possibilities too.

[NBob]

May I suggest that you say to your doctor that because you are unwell on 25mcg or 37.5mcg and you are well on 50mcg, that 50mcg is the dose that is right for you and you want to remain on that dose. Be firm, assertive and calm but not aggressive.

Remind your doctor that according to paragraph 16c of Good Medical Practice he has a duty to take all possible steps to alleviate pain and distress whether or not a cure may be possible.

Your doctor has a duty to work in partnership with you (paragraph 49) and to listen to patients, take account of their views, and respond honestly to their questions, (paragraph 31) of according to Good Medical Practice.

He is likely to say that your TSH is too low. I would tell him that TSH is not a good indicator of health when on Thyroid Replacement Therapy. (print of and show him this paper- Is Pituitary Thyrotropin an Adequate Measure Of Thyroid Hormone-Controlled Homeostasis During Thyroxine Treatment? eje-online.org/content/168/...

Your doctor may say that low TSH leads to osteoporosis. I would say that that is not so and there is a lot of evidence to say that thsi si not so. (print of and show him this paper - Is it safe for patients taking thyroxine to have a low but not suppressed serum TSH concentration? endocrine-abstracts.org/ea/....

if you doctor is reluctant to take this evidence, remind him that he has a duty to provide effective treatments based on the best available evidence according to paragraph 16b of Good Medical Practice. Furthermore, the doctor should treat the discussion you have and the information you give him as an opportunity for informal learning and reflection about his performance that has arisen spontaneously from his day-to-day practice. Remind that the GMC says he should do this according to paragraph 8 of Good Medical Practice and paragraph 12 of Good Medical Practice supplementary guidance Continuing Professional Development.

Repeat your request to remain on 50mcg.

If there is no movement from your doctor , I would put all the above in writing and if necessary complain to the CCG about your below standard treatment.

[mitchell66 in reply to NBob]

I love this <3

[Hidden in reply to mitchell66]

yes indeed! I think it's a keeper!

ooh hang on, there's another one below J

[NBob]

Here is my version of a letter to the GP about maintaining my dose of thyroxine. You can copy and paste into word processor and change and adapt to your own circumstances or personal view on how to deal with your GP. Please print off the research papers and attach to your letter. You can print off the letter and take it with you to your GP to prompt you when you talk to your GP and leave it with him. There is a threat of a formal complaint at the end. you can remove this if you like. It's your choice what you put in your letter but my advice is to be empowered.

Dear Doctor… …

You have told me that you wish to reduce my dose of Levothyroxine. Unfortunately you have not told me why you wish to do so nor have you given me the information I need to understand your reason for wanting to reduce my dose of Levothyoxine. I remind you that Good Medical Practice places a duty on you to work in partnership with me (paragraph 49) and to provide me with information I need (paragraph 32).

I remind you that, according to paragraph 49 of Good Medical Practice, you have a duty to work in partnership with me and according to paragraph 31 of Good Medical Practice, you have a duty to listen to me, take account of my views, and respond honestly to my questions.

I am feeling well on …..mcg of Levothyroxine. I do not feel well on any dose below that. It is therefore logical that …. mcg is the right dose for me. Any dose below …mcg will cause me pain and distress. I remind you that, according to paragraph 16c of Good Medical Practice, you have a duty to take all possible steps to alleviate pain and distress. I remind you that, according to paragraph 47 of Good Medical Practice, you have a duty to treat me as an individual. Consequently I cannot see any logical reason to reduce my dose.

If you think that my TSH is too low please be aware that TSH is not a good indicator of health when patients are on Thyroid Replacement Therapy. Please read the attached paper - Is Pituitary Thyrotropin an Adequate Measure Of Thyroid Hormone-Controlled Homeostasis During Thyroxine Treatment? eje-online.org/content/168/... ).

You may think that low TSH leads to osteoporosis or heart problems. That is not so and there is a lot of evidence to support this view. Please read the attached paper - Is it safe for patients taking thyroxine to have a low but not suppressed serum TSH concentration? endocrine-abstracts.org/ea/....

I remind you that, according to paragraph 16b of Good Medical Practice, you have a duty to provide effective treatments based on the best available evidence. Furthermore, you should treat the discussion you have had with me (or this letter) and the information I have given you as an opportunity for informal learning and reflection about his performance that has arisen spontaneously from your day-to-day practice. This is in accordance with paragraph 8 of Good Medical Practice and paragraph 12 of Good Medical Practice supplementary guidance Continuing Professional Development.

Please treat this letter as a complaint and put this letter in your portfolio of evidence for your annual appraisal and for revalidation. Please ensure that this letter is placed in my medical records.

If you do not maintain my dose of Levothyroxine, I may make a formal complaint to the Clinical Commissioning Group or the General Medical Council.

Yours Sincerely,

[Stourie in reply to NBob]

Wow that is good reading

Jo xx

[fuzzlebug in reply to NBob]

NBob, my sincere thanks to you for this.

Excellent info to take with me to back up my case.

I really appreciate the time you have taken to find and post this information for me.

If I may ask, is this from your own personal experience?

[NBob in reply to fuzzlebug]

I'm afraid so. I have the advantage of working in public health in an enforcement role. I know about guidelines and Codes of Practice and how they apply to professionals. I hope to pass on my knowledge to those of us who don't have that sort of knowledge and experience to empower them when dealing with GPs.

[fuzzlebug in reply to NBob]

Well, I thank you for passing on your knowledge and trying to help people with this.

[ladydawny in reply to NBob]

Nice letter Nbob

hugs Dawnx

[Moggie in reply to NBob]

Cant seem to open the second link - so frustrating, have you got any other way of posing it. Great letter by the way. How did your GP take this?

Moggie x

[humanbean in reply to Moggie]

endocrine-abstracts.org/ea/...

Does this work for you?

[Moggie in reply to humanbean]

Thanks for that - they can add ovarian cysts to the list as, apparently, if your TSH is now low enough it is common for female thyroid patients to suffer with cysts.

Moggie x

[Hidden]

I would suggest a whole new question, comments can get missed!

xx

[fuzzlebug in reply to Hidden]

Ok, will do that. Thanks Louise.

[Muffy]

Your T4 is within range so I would try to keep going on the same dose that made you feel better.

Try having your blood tests as early in the morning as possible e.g. 8 - 8.30am as that is when your Tsh will be higher. Also, take your meds the day before you blood is drawn.