Preparation for Endocrinologist Appointment

[Peacefull]

Hello, I was diagnosed in February after telling my GP for 3 + years something was wrong. Anyway i finally have an Endocrinologist appt in 3 weeks. So my question is :

Looking at the results below is there anything I should be expecting or pointing out myself? I really want to be prepared so that i'm not fobbed off or overwhelmed on the day.

Thank you in advance.

Feb-2018 FT4 15 (11.0-22.0) pmol/L

Feb-2018 TGA 23 (0.0-33.0) iu/ml

Feb-2018 TSH 4.4 ( 0.27-4.2)

Mar-2018 FT4 15 (11.0-22.0) pmol/L

Mar-2018 TSH 6.3 (0.27-4.2)

Feb-2019 FT3 4.6 (3.5-7.8)

Feb-2019 FT4 14 (11.0-22.0) pmol/L

Feb-2019 TSH 8.9 (0.27-4.2)

Mar-2019 FT4 30.8 (11.0-22.0) pmol/L

Mar-2019 TGA 29 (0.0-33.0) iu/ml

Mar-2019 TSH 3.8 (0.27-4.2)

Apr-2019 TSH 3.78 (0.27-4.2) pmol/L

Apr-2019 FT3 4.3 (23.5-7.8)

Apr-2019 FT4 15.6 (11.0-22.0)

Apr-2019 TPA 32.5 <115

Apr-2019 TGA 23 (0.0-33.0) iu/ml

Kind regards

Ally

[Judithdalston]

Sorry but could you go back into your post and put some spaces into your results and ranges, bit difficult to read accurately?

[Peacefull in reply to Judithdalston]

Lol Yes have done there were spaces before i posted but then disappeared

[SlowDragon Ambassador]

Levels are hoping around, this suggests you have Hashimoto's also called Autoimmune Thyroid disease

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

TGA - this might be another way of listing TPO antibodies

20% of Hashimoto's patients never have raised antibodies. An ultrasound scan of thyroid can be helpful to get diagnosed

Low vitamin levels are extremely common, especially with Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Are you on Levothyroxine?

If so how much?

[Peacefull in reply to SlowDragon]

Hi, Yes i should have mentioned i am on Levothyroxine, 25mcg and 50mcg on alternate days. Just for clarification i started on 25mcg of Levothyroxine after the Feb 19 blood tests and after the Mar 19 tests it was changed to 25mcg and 50mcg on alternate days.

For the first 2 weeks i started to feel a little better but soon after all symptoms returned. My B12 was 80.8 (37.5-188pmol/L) and Vit 4 39.2 (50-175nmol/L) I have been supplementing D about 3000iu daily. I always have blood tests done at the earliest appt of the day and fasting with no medication since the previous morning. I am due to go back for more bloods this week FT3 TFT TPO also ferritin, lipids and Renal function test, FBC and renal function. My Endocrinologist has requested before i attend i have also Total CK and TPO.

Thanks so much for your advice. Does the details of my Levothyroxine medication and D and B12 levels alter your opinion at all?

Kind regards

Ally

[SlowDragon Ambassador in reply to Peacefull]

Standard starter dose is 50mcgs (unless over 50years old)

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards (retesting bloods 6-8 weeks after each dose increase) until TSH is under 2 (many need TSH under one) and FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (note recommended to avoid calcium rich foods at least four hours away from Levo. Plus avoid all soya)

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Vitamin D is far too low.

GP will only prescribe to bring vitamin D up to 50nmol. Aiming to improve by self supplementing to at least 80nmol and around 100nmol may be better .







Once you Improve level, very likely you will need on going maintenance dose to keep it there.




Retesting twice yearly via vitamindtest.org.uk




Vitamin D mouth spray by Better You is good as avoids poor gut function.




It's trial and error what dose each person needs. Frequently with Hashimoto's we need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Low B vitamins and low Vitamin D can be linked

And both very common with hypothyroidism

drgominak.com/sleep/vitamin...

Important to test folate, B12 and ferritin and TPO antibodies

Come back with new post once you get results and ranges

[Peacefull in reply to SlowDragon]

Thanks i have the vit D Spray. And am 53 Years old

[SlowDragon Ambassador in reply to Peacefull]

GP could /should be testing for Pernicious Anaemia before considering starting on B12 injections or B12 supplements

This could be done now, as endocrinologist may not be interested in testing

Folate and ferritin tests too

Good that you are getting TPO antibodies tested

Request coeliac blood test too

[Hidden]

You have had several lots of blood taken, was this by a helpful GP. It is best to have blood tested as early on a morning as possible, nothing to eat before hand and with out having any thyroid meds for 24 hours. You Tsh has been up and down a bit but it is a test that fluctuates at lot and interestingly your T4 was 30 at one point. Are you on any levo or has your GP not started treatment? Your TSh over 8 would qualify you for treatment in some parts of the country or under some doctors. Brace yourself for endo appointment, might be worth writing a letter with your history, symptoms etc to hand over at the appointment for your notes. You do need all the vits etc tested as suggested by slow dragon.

[Peacefull in reply to Hidden]

Hi Mandyjane,

Thanks for your response. Yes, some are GP tests and some are medichecks. My GP didn't want to start treatment as my TSH wasn't over 10. But i insisted because of my wide range of symptoms. I should have mentioned i am on Levothyroxine, 25mcg and 50mcg on alternate days. Just for clarification i started on 25mcg of Levothyroxine after the Feb 19 blood tests and after the Mar 19 tests it was changed to 25mcg and 50mcg on alternate days. GP wont increase until i see the Endo.

For the first 2 weeks i started to feel a little better but soon after all symptoms returned. My B12 was 80.8 (37.5-188pmol/L) and Vit 4 39.2 (50-175nmol/L) I have been supplementing D about 3000iu daily. I always have blood tests done at the earliest appt of the day and fasting with no medication since the previous morning. I am due to go back for more bloods this week FT3 TFT TPO also ferritin, lipids and Renal function test, FBC and renal function. My Endocrinologist has requested before i attend i have also Total CK and TPO.

Many thanks,

Ally

[SilverAvocado]

Peaceful, have you been taking any thyroid hormone during this time? Particularly your over range freeT4 in March looks like you're taking something?

Mar-2019

FT4 30.8 (11.0-22.0) pmol/L

TSH 3.8 (0.27-4.2)

Apr-2019

TSH 3.78 (0.27-4.2) pmol/L

FT3 4.3 (23.5-7.8)

FT4 15.6 (11.0-22.0)

Comparing these two sets of results looks like something strange is going on. If you were on no treatment at all during this time, then its a very surprising result. It may show a Hashimotos flare. This is a symptom of Hashimotos autoimmune thyroid illness, the most common form of hypothyroid. Its an autoimmune disease that slowly destroys your thyroid, because thyroid tissue stores extra hormone, as it gets destroyed it can sometime dump excess hormone into the blood and cause a sudden spike in hormone.

Probably because it was quite short lived your TSH hasn't shifted as much as we might expect. TSH (thyroid stimulating hormone) is released by the pituitary to communicate to the thyroid to release more hormone. But it tends to be a bit slower to change than the other 3 measures.

Unfortunately doctors often don't know about Hashimotos flares, so they may just say this is a puzzle, or they might say it's evidence of an overactive thyroid. Its good to be prepared to argue with them if they try to fobb you off.

If you have been taking any tablets, ignore what I've just said! A bit more information and editing to make the different sets of blood tests clearer would help a lot.

[SilverAvocado in reply to SilverAvocado]

A more general piece of advice would be to print all these results out and take them with you. Looking at your April result, they may not agree to treat you. So it might help to be able to point to your February result w a much higher TSH.

[Peacefull in reply to SilverAvocado]

Hi, Yes i should have mentioned i am on Levothyroxine, 25mcg and 50mcg on alternate days. Just for clarification i started on 25mcg of Levothyroxine after the Feb 19 blood tests and after the Mar 19 tests it was changed to 25mcg and 50mcg on alternate days.

For the first 2 weeks i started to feel a little better but soon after all symptoms returned. My B12 was 80.8 (37.5-188pmol/L) and Vit 4 39.2 (50-175nmol/L) I have been supplementing D about 3000iu daily.

Thanks for your help,

Ally

[Hidden in reply to Peacefull]

Hi alley, feeling better at first then having a bit of a relapse is very common and indicates that you will need an increase in thyroid meds.If your Vitamin D is low you need to be taking more than 3000 iu. The vitamin D council recommend 5000iu to maintain levels. You probably need about 10,000iu and it is best to take the vitamin D combined wit vitamin K2, 'NOW' do a good spray from amazon. I would also aim to increase B12 with some patches or under the tounge lozanges.

[Peacefull in reply to Hidden]

Oh gosh better get some more D, i am running low and will get the K2 as well. Thanks for all your help

[SilverAvocado in reply to Peacefull]

So for the April blood draw you are on a higher dose than than the March with very high freeT4? That March freeT4 is still so high it needs explanation. Could be a lab error, or it must be something like a flare. I'm surprised your dose was increased with that, but just shows how doctors are really blinkered to look at TSH only. Usually the high freeT4 with raised TSH would suggest freeT3 is low. But I don't think we can draw any conclusions because it looks like the high freeT4 was short lived.

Ignoring that one anomalous result, overall you've got midrange freeT4, and the rule of thumb for treatment is to get it high in the range. This is where most ppl feel well, but your doctor may not agree

The freeT3 doesn't tell us a lot really until you've got freeT4 high in range. T4 is the storage form and your body converts it into T3 which is active. Yours looks like its doing ok at the moment, but you need to get freeT4 high and confirm your converting well.

Looking at this my recommendation would be a 25mcg dose increase and see how you get on. I would be a little cautious because of the one high result. Its either a flare or a lab error. You would probably know the flare because you'd have felt strange.

Your B12 is very low, and Vit D very low. These will be causing you symptoms. As others have said, you need a high dose vit D supplement. It needs to include vit K (I think it's that one. There is a lot of info on the forum from more knowledgeable people). For vit B12 you may be eligible for NHS injections, as that is a very low result. If not you might have to consider self injecting.

These both need a bit of research from you. The Pernicious anaemia forum on Healthunlocked is also v good for B12 issues. You also need your ferritin and folate looked into, as these may be low, too. Being hypothyroid trashes vitsmins.