Latest tests,advice needed before endo appointment

[Kriticat]

I have just had my latest test results back, and am confused and would really appreciate some advice.

TSH: 2.92 mU/l (Range 0.3 - 4.5) 62.38%

FT4: 1.1 ng/dl (Range 0.8 - 1.8) 30.00%

FT3: 4.3 pmol/l (Range 3 - 6.5) 37.14%

I'm on tirosint 25mcg daily.

I have an appointment with the endo next week but she said in her email that my results look fine. I don't feel fine, (in addition to all the usual symptoms I have recently developed horrible inflammation problems with my wrists), so I really need to know what to ask/tell her.

B12, magnesium , ferritin and folate levels are all good, Vit D is OK but she doesn'twant me to supplement at the moment due to v high calcium and phosphorus.

The only low levels I have are zinc and DHEA-s,

I am on a mega zinc (50mg) for 10 months now, so she believes I must have an absorption issue.

She has said she wants to talk to me about a DHEA-s supplement next, but I have heard bad things about it... anyone tried it?

Having tested negative for coeliac I'm about to go back on gluten free diet, hopefully this will help with the inflammation etc.

[greygoose]

I took DHEA but it didn't suit me. It all converted to testosterone and I was covered in acne! I seem to manage pretty well without it.

Oh, by the way, if your endo thinks a TSH of over 2 is 'fine', then she has no idea what she's talking about! In no way is it 'fine'.

[Kriticat in reply to greygoose]

Thanks for the info, and yes, I thought that almost 3 TSH sounded lousy, I need more ammunition to tackle her on that... sacking her isn't really an option, there are only 2 endos in my area, and I've already sacked the other one!

[greygoose in reply to Kriticat]

Yes, endos are generally pretty useless. Despite what GPs think, the majority of endos have no more training or knowledge of thyroid than the GPs themselves. They are not the specialists GPs think they are. They are mostly diabetes specialists with a few weird, half-hearted theories about thyroid.

[Jefner in reply to greygoose]

oh dear that doesn't put me in good stead for my appointment next week with my new Endo

[greygoose in reply to Jefner]

Well, surely you'd sussed that out by now, no?

[Jefner in reply to greygoose]

they can't ALL be labelled as useless though, we have to have SOME hope there is someone out there that can help us

[jade_s in reply to Jefner]

I've had one endo who really did help me! Out of the many that were worse than useless. I did research heavily before I picked her and it paid off, but we are not always as lucky nor can we always pick who we want. Anyway, here's some hope for you Jefner!

It started out really bad at the first appointment, she thought i was overdosing myself on everything including vitamins. Honestly I was dreading going back, but I had a relative with me for moral support. After she saw my blood test, and nothing was out of range, and FT4/FT3 were low even though TSH was suppressed (thank you T3 only), she remained calm & sensible and was actually quite helpful & flexible in accommodating the things I did & didn't want to change.

I hope your appointment goes well! Best wishes 🙏

[greygoose in reply to Jefner]

There's always hope. But, unless the endo takes a particular interest in thyroid, they're all as bad as each other because their education is so bad. Despite the name, endocrinologist, which implies they know about the whole endocrine system, they generally don't. Sad, but true.

Good luck with your appointment. I hope yours turns out to be one of the good ones.

[Jefner in reply to greygoose]

thanks honey, not holding my breath but hoping

[greygoose in reply to Jefner]

🤞🤞🤞

[SlowDragon Administrator]

You need next dose increase in levothyroxine

Bloods should be retested 6-8 weeks after each dose increase

Approx how much do you weigh in kilo

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Kriticat in reply to SlowDragon]

Thanks, that's interesting... I weigh around 58 kg, and the 1st endo started me on 75mcg of levothyroxine, but when I was retested TSH had dropped to 0.01, Levo was reducedto 50mcg, and 6 weeks later TSH was still only 0.02, so then it was reduced to 25mcg. This brought TSH back up to 1.87, whick looks good, but didn't feel great .although better than now! My next test TSH had dropped to 0.84, so she suggested only taking weekdays, which led to a TSH going back up to 3.83! The latest test is only 4 weeks after, I was having gluten antibodies tested so thought I might as well see where I was since I'm feeling so blurry!

Do you think I should increase again? Are my FT3 and 4 about where they should be?

I really appreciate your time and effort at helping me and others with such a confusing and frustrating situation... it's incredible that doctors and endocrinologists seem so poorly informed!

[SlowDragon Administrator in reply to Kriticat]

Dose by TSH is completely wrong

Dose should be adjusted by looking at Ft4, Ft3 and getting all four vitamins tested and optimal

Most people when adequately treated will have Ft4 and Ft3 at least 60% through range

58kg x 1.6mcg = 92mcg per day as the likely daily dose levothyroxine required

Only ever increase by maximum of 25mcg levothyroxine at any one time

Suggest you split you Tirosint…taking 25mcg waking and 25mcg at bedtime

What are your actual vitamin D, folate, B12 and ferritin results

What vitamin supplements are you currently taking

Presumably you have autoimmune thyroid disease aka Hashimoto’s

Strictly gluten free diet likely to help

often dairy free diet necessary as well

[Kriticat in reply to SlowDragon]

Thanks so much SlowDragon

Yes, I have hashimoto's (both TPO and TG antibodies, I also have TSI antibodies) and the ultrasound showed many small nodules on my thyroid.

My vitamin D is 50 ng/ml Range 30-100

Folate is 10.0 ng/ml Range 3.0-19.

Ferritin is 118 ng/ml Range 15.0-195.0

B12 is 614 pg/ml Range 200-150

I'm taking high dose B12, zinc and magnesium, a b complex (thorne), fish oil and eating Brazil nuts for selenium. I was taking Vit D, but my calcium is very high so endo said to stop for a while and retest in the winter.

I reintroduced gluten in order to do the antibody tests, they are negative so I will go clean again now. I didn't find it so hard, but dairy would be tough, I don't drink milk or eat much cheese, but I love butter and sheep's yoghurt!

So you think I should increase dosage in order to raise FT3 and 4, ignoring TSH level? Taking tirosint at night would mean changing the magnesium, which I usually take before bed... how long after magnesium and food should I take the tirosint?

[jade_s]

I take DHEA because my levels were extremely low. I cannot tolerate more than about 5 mg though. I can barely manage alternating 5 & 10mg.

I recently started Pregnenelone, levels were somewhat low, and it's supposed to convert into dhea. I started on 25mg and recently increased to 50mg and so far so good symptoms-wise.

I will retest in a few months. Right now i don't know if it's helped dhea levels. No clue why i can't tolerate more dhea though.