Endo consultation

[Starmen]

I saw the NHS endocrinologist this week as my gp did not understand my fluctuations in thyroid results.

My results for Jan are :

T4. 16.6omo/L (11.5. 22.7)

TSH 0.26 Miu/L. (0.34. 5.44)

I have been feeling better with these levels but far from well. I still feel hypo very tired in the morning a bit if a lift in the afternoon but exhausted by 7pm.

I am having less palpatations . The endo wanted to reduce the levo to 75mcg I am on 100 mcg since October I feel better on this amount but much worse on 75mcg.

He did listen to me and after much discussion agreed to keep me on 100 mcg and write to GP to ask them not to reduce medication further if my TSH drops.

I felt I needed an increase however he refused saying my palpatations would get worse. I asked about the possibility that I may not be a good converter he acknowledged that is the case for some people but did not give an answer as to how this is determined in an individual.

He has requested blood tests for B12 and folate and thyroid test in 3 months

His parting comments were that I might be very ill for a few months I told him I have been very ill for almost a year now.

He also commented that levo is only made in 25 50 75 and 100mcg tablets so even if I would benefit from an extra 5 or 10 mcg it does not exist . I came away feeling disappointed but I know this is the norm.

I feel very down and frustrated even isolated as I dont know what to do next to feel better. I am taking all the good advice from here about supplements and have found improvement in sleep and stomach issues . However the fatigue persists along with feeling hot then cold .

Any comments or suggestions would be much appreciated. Thank you

[greygoose]

What a very ignorant doctor! Doesn't even know how to tell how well you convert? It couldn't be simpler, you just get the FT4 and FT3 tested at the same time and compare them. If you are converting well, the percentages through the range will be roughly equal - FT3 slightly lower than the FT4.

However, your FT4 is rather low itself, not quite 50%, so FT3 is going to be too low, that's almost a given. Which is why you don't feel well.

He should not be dosing by the TSH! It is the FT3 the most important number, and he hasn't even tested it. You are only over-medicated if your FT3 is well over-range. The TSH is irrelevant as far as dosing is concerned. Such a shame you fell on such an ignorant man!

[Starmen in reply to greygoose]

Thanks for your reply I feel reassured that i need to persist as all the advice I have had on here has always been helpful

[greygoose in reply to Starmen]

You're very welcome.

[SlowDragon Administrator]

Medichecks results from 3 months ago

Ferritin 51.50 ug/L ( Range 13-150)

Folate Serum 6.29ug/L (Range 3.89)

Vitamin B12- Active 71.000pmo/L (Range 37.5-188)

Vitamin D 32.90nmol/L (Range 50-200)

TSH 6.86 mU/L ( Range 0.27 -4.2)

Free T3. 3.92 pmo/L ( Range 3.1 6.8)

Free Thyroxine 14.000 pmo/L (Range 12-22)

Thyroglobulin Antibodies 20.400 IU/mL

(Range< 115)

Thyroid Peroxidase Antibodies 600 IUmL

(Range< 34)

Were you on 75mcg or 100mcg at this test

What vitamin supplements are you currently taking

Have you had coeliac blood test done

Are you on strictly gluten free diet

[Starmen in reply to SlowDragon]

I was on 75 mcg when tested 3 months ago my gp increased to 100 mcg after I showed her these results. I have been tested for coeliac it was negative and hsvr been gluten free for 8 months.

[SlowDragon Administrator]

Suggest you retest via Medichecks and come back with new post once you get results

Obviously many people fine tune levothyroxine dose …..eg taking 100mcg 3 x week and 112.5mcg 4 x week …..or many different variations

The fact endocrinologist seems unaware of the common need to fine tune dose suggests he was diabetes specialist

You need ferritin, vitamin D, folate and B12 retested …not just B12 and folate

[Starmen in reply to SlowDragon]

Thanks will do

[SlowDragon Administrator in reply to Starmen]

results for Jan are :

T4. 16.6omo/L (11.5. 22.7)

TSH 0.26 Miu/L. (0.34. 5.44)

Come back with new post once you get FULL thyroid and vitamin testing results

need to check vitamin levels are optimal

[tattybogle]

As well as not understanding that T3 lowers TSH more than T4 does....... can this man not do maths ??

Levo has such a long half life, that to get fine adjustments , you simply average out the required dose over a week, while making the daily differences as small as possible .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

103 mcg is achieved by (100mcg 6 days a week +1 day a week of 125mcg)

(725 divided by 7)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

107 mcg is achieved by (100mcg 5 days a week +2 days a week of 125mcg)

(750 divided by 7)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

110mcg dose is achieved by (100mcg 4 days a week) + (125mcg 3 days a week) ( 775mcg divided by 7)

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

An extremely common dose is 112.5mcg ,and even your average GP easily figures out how to prescribe this for loads of us when100mcg is not enough and 125mcg is too much.

112.5 mcg dose is achieved by (100mcg + half a 25mcg tablet) each day, or alternating days of (100mcg / 125mcg )

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Any endocrinologist who can't be bothered to work out how to offer fine dose adjustments is obviously being paid far too much.

Perhaps it's worth pointing out to your GP this 'fine dose adjustment' aspect of unhelpfulness/lack of knowledge from this particular endocrinologist ....you never know ,it might help convince GP to allow you to be referred to someone else . (if you can find anyone better)

[Starmen in reply to tattybogle]

Thanks for this and the time taken to demonstrate the fine tuning. I am hoping my GP will let me increase as you have suggested

[serenfach]

I cannot add to the excellent advice above, but urge you to get tested privately, then come back with the results, and this brilliant forum will take it forward and you will feel better soon. It should not be such a battle, but most of us have been through it, got the scars, and now have found a way to feel well. Onward and upwards!

[Starmen in reply to serenfach]

Thank you will do the support here is very encouraging