Help with results and my doctor

[Shoesy99]

HI

I've been having challenges with my doctor, who won't listen to me despite some great articles and advice from this group. Back in November my TSH level was 4.83 (range 0.35 to 4.94) and T4 14.0 (range 9 - 19.05). I was on 50mg of levothyroxine for my UAT diagnosed in Sept 23.

She refused to listen to that i may need my dose increased as I still felt awful and the optimum range for TSH is nearer 1. As my ferritin level was only 5 (range 20-204). She said until my ferritin gets to 30 its not worth considering other things impacting me as iron stores will be causing my fatigue.

I've had my results back today with a note from the doctor saying no follow up needed.

TSH - 11.4

T4 - 11.20

Ferritin - 25

Have other people experienced such unhelpful doctors - this is my second doctor at my surgery.

There was 1 day I completely forgot to take my thyroid medicine about 4 days before - is this likely to have had an impact on my results or should I be insisting on getting a new doctor (again)?

Thanks

[SlowDragon Administrator]

make a face to face appointment with yet another GP

On levothyroxine TSH should always be below 2

You need urgent 25mcg dose increase in levothyroxine

is your hypothyroidism autoimmune

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Also both TPO and TG thyroid antibodies tested at least once to see if your hypothyroidism is autoimmune

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Your ferritin likely low BECAUSE you are hypothyroid

[Shoesy99 in reply to SlowDragon]

Thanks - yes am autoimmune I believe. Tested with medichecks at doctor refused to look at it. TPO - 233 (Range 0-34) TG - 168 (range 0-115) - this was back in Oct 23.

Yep Vit D etc tested with Medichecks - all in range just but having dropped to only just in range over the last 6 months.

(currently on 2x 210mg of iron tablets daily for the ferritin).

Off to another dr - thanks!

[SlowDragon Administrator in reply to Shoesy99]

On levothyroxine we need OPTIMAL vitamin levels

Vitamin D minimum 80nmol and between 100-125nmol may be better

Active B12 at least 70 minimum and over 100 preferably

Folate at top of range

Ferritin at least over 70

What other vitamin supplements are you taking

Low vitamin levels are result of being on inadequate dose Levo

But even when on correct dose most of us need to supplement continuously vitamin D, magnesium and vitamin B complex

Some also need daily B12 as well, certainly initially

Get full iron panel test 3-4 times a year if taking iron supplements

[SlowDragon Administrator]

TSH should be under 2 as an absolute maximum when on levothyroxine

gponline.com/endocrinology-...

Graph showing median TSH in healthy population is 1-1.5

web.archive.org/web/2004060...

Comprehensive list of references for needing LOW TSH on levothyroxine

healthunlocked.com/thyroidu....

onlinelibrary.wiley.com/doi...

If symptoms of hypothyroidism persist despite normalisation of TSH, the dose of levothyroxine can be titrated further to place the TSH in the lower part of the reference range or even slightly below (i.e., TSH: 0.1–2.0 mU/L), but avoiding TSH < 0.1 mU/L. Use of alternate day dosing of different levothyroxine strengths may be needed to achieve this (e.g., 100 mcg for 4 days; 125 mcg for 3 days weekly).

[Jazzw]

For what it’s worth, I doubt missing a dose will have impacted your TSH very much. And in the interests of getting a raise in dosage (which I would say you absolutely need!) I wouldn’t admit to having accidentally missed a dose.

Your doctor is verging on negligent.

[ThyroidieGriaffe]

Hi I would help the GP and take the NICE guidance along with highlighted sections to supplement the useful links given above. I may have missed previous posts and you are familiar with those. They are not great but they would be helpful to get you an increase and treatment to symptoms. With autoimmune as Slow Dragon sets out you have to deal with the triggers and supporting endocrine pathways with D, B and C vits.

[tattybogle in reply to ThyroidieGriaffe]

adding link to NHS (N.I.C.E) guidelines here here in case Shoesy doesn't have it :

nice.org.uk/guidance/ng145/...

"1.4 Follow-up and monitoring of primary hypothyroidism

Tests for follow-up and monitoring of primary hypothyroidism

1.4.1Aim to maintain TSH levels within the reference range when treating primary hypothyroidism with levothyroxine. If symptoms persist, consider adjusting the dose of levothyroxine further to achieve optimal wellbeing, but avoid using doses that cause TSH suppression or thyrotoxicosis.

1.4.2Be aware that the TSH level can take up to 6 months to return to the reference range for people who had a very high TSH level before starting treatment with levothyroxine or a prolonged period of untreated hypothyroidism. Take this into account when adjusting the dose of levothyroxine.

Adults

1.4.3For adults who are taking levothyroxine for primary hypothyroidism, consider measuring TSH every 3 months until the level has stabilised (2 similar measurements within the reference range 3 months apart), and then once a year.

1.4.4Consider measuring FT4 as well as TSH for adults who continue to have symptoms of hypothyroidism after starting levothyroxine".

[serenfach]

I am sorry you are having to go through this. Your GP is making you ill which is not acceptable. If you cannot see another GP in your practice, ask to see the Practice Manager and ask why you are being neglected like this, and ask that the GP gets training in thyroid managemant. I doubt you are the only patient she is seeing with thyroid trouble, so she is dangerous.

Get another appointment as soon as possible with someone else as you are only going to get more ill, and it takes a while to climb back up this greasy pole! You need an increase, and then test again in 3 months to see if you need another increase. I hope you get this sorted soon, and sending a hug.

[Mixteca]

I cannot comment on thyroid, I usually hang out in the PAS group, but with ferritin that low I'd insist on a full iron panel as it looks like you've a significant iron deficiency that supplements may not help. It's likely your GPs won't understand that either, so an iron specialist's your best bet. Get in touch if you need one.

[Luna2024]

Hello,

Firstly you should be contacting your Endocrinologist Consultant Dr. They are the ones who understand exactly what is going on with results. GP’s I have been told can only point you to the person who specialises in the person you need to see.

Dr’s. Are not able to overrule a Consultants expertise they specialise in. Get your Consultant’s input directly and which medication you. Prepare that works for you. If it comes from them they will listen. As unfortunately as a patient they don’t want you asking about specialist care they know nothing about.

If you have an endocrinologist looking after you. Be extremely polite to these wonderful people I found helps. The secretary is human after all and never give out or be angry with them. Be so polite in thank you etc. They are you fast access to the Specialist you need in a hurry.