Questions to ask before seeing a GP

[Ivanab]

Hi all,

I posted earlier in the summer. I can't find the post but in short

- high TGaB antibodies, in range TPO

- results at the time of posting last time (June) were from medichecks:

TSH 2.66 (.27-4.2)

FT3 3.8 (3.1- 6.8)

FT4 12.9 (12-22)

I did these tests on the basis of a £400 consultation with an endo here (unfortunately not on thyroid uk list), who told me that my symptoms are not thyroid related and that i should try to stop thyroid meds altogether. That my vitamin levels from October 2017 were fine so no need to retest them (ugh).

I am on 50mcg Euthyrox and have been for the past 2 years. Being medicated back in Czech rep as was discharged by an endo here without any blood tests/ultrasound. the GP does have my thyroid issue on file but i get my meds from Czech rep. I see the endo there once a year and she always does an ultrasound + blood tests (TSH and ft4 only *sigh*). Since I pay for the blood tests, I added ft3 and also sex hormones as per gyno's advice as i have 0 sex drive and PMS (water retention, fatigue etc) which I never suffered with before thyroid issues. CZ endo said I should have added testosterone as well but that since I want to get pregnant (have 3 kids already), there would be no help anyway as it's normally corrected by taking the pill. My gyno was happy with my sex hormones results ( Ive attached)

Results in CZ 14 July 2020:

TSH: 2.120 (.380-3.5)

FT3: 3.3 (2.6-5.7)

FT4: 12.21 (9.01-19.05)

From all the brilliant info on this forum, I know that my numbers are far from optimal, despite being in the stupid set 'range'. I have used the polish calculator that has been posted here several times. I have looked over past results and I have noticed a trend in the 'in range' but low ft3 and ft4. My symptoms were not overly severe in the summer but they are becoming more and more apparent I had some hair loss pretty much since this all started at the end of oct 2017 but now it has intensified and I am getting quite worried. I developed rosacea in February after my skin went haywire after the thyroid probs started) and have had about 3 Raynauds 'episodes' on my hands in the past year. I still have 0 sex drive and my irritibality is def on the rise (atm I want to kill everyone in this house and pretty sure it's a mutual feeling). Apart from that I feel I have a puffy face (although I have gained about 8kg over the past 3 years - I cant blame the thyroid entirely- i have been eating my emotions and my relationship with food has a serious dent in it as a result of going head first into AIP without much prior preparation. I will admit I am not gluten free (although I have mainly eliminated it but I do understand it's all or nothing). Since my experience with the AIP and so much restriction, I have a serious mental struggle in eliminating things since I dont have any obvious symptoms after consuming gluten (ie i would find it much 'easier' for my brain to comprehend if I had immediate symptoms like stomach cramps etc). Again this is a mental thing I need to tackle. Also like I mentioned, PMS and water retention is real.

FINALLY - I am going to contact my GP and since the 'questionnaire' that has to be filled out for a consult these days I feel this gives me some space to try to get their attention. I have read dr Toft's guidelines which suggest a low TSH and higher in range ft3 and ft4. Is this something that GPs are aware of at all? Will they know who he is? Is there any point in trying to explain optimal vs in range? Can I directly ask them to please test vitamins etc? I am happy to pay for ft3 as I gathered it is almost never tested through NHS. If I have to do private tests for everything. is it worth doing antibodies again? Do I mention Raynaud and rosacea to GP as I was seen by a nurse back in Feb for rosacea and just given a cream.

I;ve been holding off to write to the GP but my hair loss is distressing and my temper is getting worse by the day as it stands. I have enough meds to keep me going for a year or so, but I guess increasing meds by myself is def not advised?

thank you for your help and apologies for the long story

[SlowDragon Administrator]

Previous posts

healthunlocked.com/user/Ivanab

First post 3 years ago shows very low ferritin and low B12

Low ferritin linked to hairloss

Essential to regularly retest vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

Ask your CZ endocrinologist to increase prescription of levothyroxine to 75mcg

[SlowDragon Administrator]

High TG antibodies

pubmed.ncbi.nlm.nih.gov/303...

Elevated TgAb levels are associated with symptom burden in HT patients, suggesting a role of thyroid autoimmunity in clinical manifestations of HT. Based on these results, we recommend screening for TgAb antibodies in HT patients with symptom burden.

[Ivanab in reply to SlowDragon]

Hi! thanks for replying and for the article link, that sounds like me apart from the harsh voice! Maybe that's still to come. I do hope that once my meds work properly, the edema and the hair loss will subside. CZ endo won't increase my meds as she is happy with my levels. I did say I dont understand why my ft4 is always low but she didnt seem phased by it. She deals with a lot of pituitary tumors etc so she said im a straight forward case. I questioned my ferritin levels last summer when my hair was falling out more than usual, but she didnt seem to make the connection between optimal levels and meds absorption

August 2019:

Iron 12.3 (9-30.,4)

Ferritin 7.1 (4.6- 204)

b12 321 (138-652)

TSH 3.294 (0.380-3.5)

ft4 10.63 (9.01-19.05)

Im glad I at least get the ultrasound to check for abnormalities (although I think this is standard for all endo patients in CZ). I have tried to look on fb groups for recommendations of more enlightened endos but it seems this is a worldwide problem although it is much easier to see an endo there than here (ie one of the doctors at the GP surgery said she could try to refer me again but that they probably wouldnt accept it).

I will contact the GP tonight or tomorrow morning and hopefully I will get someone who is willing to dive deeper or at least hear me out on the need to test vitamins and see the trend in my low ft4. I m currently taking no supplements as stopped biotin and iron in case i was going to have blood tests and was in 2 minds whether to supplement on my own accord without knowing levels esp iron (although historically this has always been a problematic level for me). I do recall that the expensive UK endo did tell me to take 660mcg of iron which I did until the pills were finished.

2 more thingsI should mention is that I don sweat and havent for as long as I can remember. I will smell of sweat if i dont use deodorant but Im not drenched - ever. If i do exercise, I just get really hot, which again didnt really bother me in the past but now that ive developed rosacea, my skin just gets flaming hot and makes me really self conscious. Im guessing this is a thyroid related thing as well.

The second thing is I dont have a problem with going to sleep as I have been quite militant with my sleep routine but I do have problems falling back asleep if I need to use the bathroom in the middle of the night(which is most nights) .

[SlowDragon Administrator in reply to Ivanab]

August 2019:

Iron 12.3 (9-30.,4)

Ferritin 7.1 (4.6- 204)

b12 321 (138-652)

TSH 3.294 (0.380-3.5)

ft4 10.63 (9.01-19.05)

These tests are too long ago

You need to get FULL thyroid and vitamin testing done

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, as you have autoimmune thyroid disease

Ask GP to test vitamin levels NOW

Low vitamins tend to lower TSH.

Getting all four vitamins OPTIMAL then 6-8 weeks later getting TSH, Ft4 and Ft3 tested

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

[Ivanab in reply to SlowDragon]

Hi thanks for the extensive reply. I always do my blood draws fasted, early in am and 24hrs away from meds. I do think my gp may have tested my ferritin on a separate issue more recently and im sure the results were low but i need to find the print out. I will write to GP and refer to NICE guidelines re dosage. I weigh 62kg atm so according to that i should be on at least 100mcg. I will ask for all vitamin levels but im happy to pay for them to be done privately- it's just if the GP will pay any attention to them or if i should just supplement by myself?

thanks again- apologies for so many qs

[Ivanab in reply to Ivanab]

p,s, do u mean test vitamins now only and then see if anything changes to thyroid levels or test vitamins AND thyroid now, increase meds and then re-test? sorry

[SlowDragon Administrator in reply to Ivanab]

Well it’s possibly cheaper to just test vitamins now

But alternatively get FULL thyroid and vitamin testing done now

Should show you need dose increase in levothyroxine as well

Come back with new post once you get results

Getting all four vitamins optimal by supplementing helps improve conversion of Ft4 to Ft3 and often TSH goes up as Ft4 falls, then can then get dose levothyroxine increased again

[SlowDragon Administrator in reply to Ivanab]

Optimal vitamin levels

Ferritin at minimum of 70

Serum B12 at least over 500

Active B12 at least over 70

Vitamin D at least around 80nmol and around 100nmol maybe better

Folate at least half way through range

Low vitamin levels are direct result of being under medicated and on too low a dose of levothyroxine

Levothyroxine doesn’t “top up “ failing thyroid, it replaces it.

guidelines on dose levothyroxine by weight

Even if we don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

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

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months. RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

Aiming for Ft4 and Ft3 at least 60% through range

Results in CZ 14 July 2020:

TSH: 2.120 (.380-3.5)

FT3: 3.3 (2.6-5.7)

FT4: 12.21 (9.01-19.05)

Ft4 is currently 32% through range

Ft3 is only 22.58% through range

Clearly under medicated and likely very low vitamins

Improving low vitamin levels will frequently improve conversion of Ft4 to Ft3

Obviously to get higher Ft4 you need to be taking higher dose of levothyroxine. We only ever increase in 25mcg steps. Bloods should be retested 6-8 weeks after each dose increase.

[Ivanab in reply to SlowDragon]

Thank you- I really appreciate it. Will post back- hopefully I;ll have good news to share

[shaws Administrator]

I've looked on your Profile page but there's no history in it, just your name.

To look for any past posts you've made, just click on your name and it will take you to your 'page' that has all of your past questions etc.

You can also add your journey before you were diagnosed.

[Ivanab in reply to shaws]

Thanks! Aha just found my 2 posts from 2017 and one from a few months ago. thanks very much. To be honest I completely forgot I posted in 2017- I was in a state of panic and soon after dove into all things AIP and was soon overwhelmed with all things thyroid. I;ll update my page because I know my story is all over the place and I struggle to be concise.

[shaws Administrator in reply to Ivanab]

There's no need to rush.

I think some members are unaware that they can put their 'thyroid history' onto their page. It's helpful if members want to respond and can read it so it gives them a background without the member having to answer repeat questions.

[SlowDragon Administrator]

Low iron and/or low ferritin frequently linked to hair loss

Never supplement iron without doing full iron panel test for anaemia first.

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

irondisorders.org/Websites/...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

Helpful post about iron supplements and testing

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post about iron supplements

healthunlocked.com/thyroidu...

Post discussing just how long it can take to raise low ferritin

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

Come back with new post once You Get iron, ferritin, folate, B12 and vitamin D test results and ranges

[Ivanab]

Thanks again for all your help! I will try to be as concise as possible in the GP consult and hopefully get someone understanding and not someone who feels they are being lectured (my experience before but perhaps thats they way i come across when I tell them ive done research.

Will do new post once Ive got results

[SlowDragon Administrator in reply to Ivanab]

Rare that a GP has any idea that low vitamin levels are linked to being hypothyroid

[Ivanab in reply to SlowDragon]

Thanks i’ll bring it up to see if i can get them to test it. The hair loss will prompt them to test ferritin at least id imagine or if im lucky a full iron panel

There is 2 drs that have always been v helpful in the past in terms of extensive testing but it’s a lottery who will read my filled consult

[Ivanab in reply to SlowDragon]

Hi! Ive got my results and posted them on here earlier today- pls could u have a peak if you have a moment? I'd appreciate it