Prolactinoma and all things thyroid

[Wilburlily]

Hi everyone, I am looking to anybody who may be able to offer some guidance and support on the below issues.

I was diagnosed by endocrinologist in late 2021 with low vitamin D and prolactinoma due to my menstral cycle stopping. At diagnosis my thyroid results were:

FT4 13.7 pmol/L, (9-22)

FT3 4.65 pmol/L ( 2.63 - 5.70)

TSH - 3.25 uIU/mL (0.35 - 4.94)

Since diagnosis I have really struggled with medication side effects from the prolactinoma treatment (cabergoline initially but also tried bromocriptin ) and returned to GP as I was feeling so tired, lethargic, low in mood all the time. After further blood tests, GP suggested thyroid is under active and insufficient in vitamin D. They prescribed levothyroxine and suggested taking a daily vitamin D supplement and discuss results with endocrinologist. On taking a starting dose of Levothyroxine I have developed the worst chest pain and acid reflux so stopped taking medication and awaited review with endocrinologist

My blood levels in August:

TSH 6.7 mIU/L. (0.30 - 4.80mIU/L)

T4 - 10 pmol/L (7.70 -20.60pmol/L)

Serum B12 - 209 ng/L (145.00 - 914.00 ng/L)

Serum folate 4.09 ug/L (3.00 - 20.00ug/L)

Serum iron 14.1 mol/L. (11.00 - 32.00umol/L)

I have been reviewed by endocrinologist who was rather dismissive and said symptoms are not thyroid related and to start taking vitamin D at 2k-4k dosage. I feel like I am going round in circles with no support and no relief in symptoms. Endocrinologist has re-tested T4 and T3 and awaiting results.

Can anybody suggest what is happening with these blood test results ? do they suggest a thyroid issue ? could the prolactinoma be thyroid related or are these two separate issues ? Do my bloods suggest I have good thyroid function ?

Lastly does anybody else get chest pain/acid reflux for medication - I have similar symptoms from both medications which makes me think its stomach related not my heart. Endocrinologist just said I am intolerant to medication.

Any advice is welcome 😀

[SlowDragon Administrator]

Welcome to the forum

High prolactin very common with hypothyroidism

How much levothyroxine were you started on

On taking a starting dose of Levothyroxine I have developed the worst chest pain and acid reflux so stopped taking medication

These are hypothyroid symptoms

Chest pain frequently low iron ferritin

Standard starter dose of levothyroxine is 50mcg

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

Dose is increased slowly upwards in 25mcg steps until TSH is below 2 and Ft3 and Ft4 at least 50-60% through range

All four vitamins need improving to optimal levels

You need thyroid antibodies tested for autoimmune thyroid disease and coeliac blood test done too

Exactly what vitamin supplements are you currently taking

What was most recent vitamin D result

How much vitamin D are you currently taking

vast majority of endocrinologists are diabetes specialists and useless for thyroid

Your results show you are very hypothyroid

Email Thyroid U.K. for list of recommended thyroid specialist endocrinologist and doctors 

[e-mail]

[Wilburlily in reply to SlowDragon]

Thankyou for the quick response Slowdragon, I will email for the list and organise to get other blood tests done.

The GP started me 25mg Levothyroxine due to adverse event with other medications and I felt a lot better in myself but the acid reflux and chest pain meant I didn't continue and endocrinologist has said not to take at all as I don't need it and to repeat the bloods.

The only supplest I am on is Vitamin D once a day (1000iu), endocrinologist has suggest I need to increase to 2000 - 4000. Latest vitamin D test was 57 nmol/L range (75-150nmol/L)

[SlowDragon Administrator in reply to Wilburlily]

yes, agreed 1000iu is only enough for a well mouse

Someone with vitamin D deficiency needs at least 2000iu-4000iu daily

Retest after 2-3 months

Aiming for vitamin D at least over 80nmol and around 100nmol maybe better

GP will often only prescribe to bring vitamin D levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol or even 80nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

pubmed.ncbi.nlm.nih.gov/218...

vitamindsociety.org/pdf/Vit...

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

Test twice yearly via NHS private testing service when supplementing 

vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function.

There’s a version made that also contains vitamin K2 Mk7. 

One spray = 1000iu

amazon.co.uk/BetterYou-Dlux...

Another member recommended this one recently

Vitamin D with k2

amazon.co.uk/Strength-Subli...

It’s trial and error what dose we need, with thyroid issues we frequently need higher dose than average

Vitamin D and thyroid disease 

grassrootshealth.net/blog/t...

Vitamin D may prevent Autoimmune disease 

newscientist.com/article/23...

Web links about taking important cofactors - magnesium and Vit K2-MK7

Magnesium best taken in the afternoon or evening, but must be four hours away from levothyroxine

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[SlowDragon Administrator in reply to Wilburlily]

The GP started me 25mg Levothyroxine due to adverse event with other medications 

It’s 25mcg ……dose should have been increased….not stopped

Standard starter dose of levothyroxine is 50mcg

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.

If still have hypothyroid symptoms with TSH under 2 ….Aiming for TSH at least around or below 1 …often lower

healthunlocked.com/thyroidu...

[SlowDragon Administrator]

low B12 and folate

Only add one supplement at a time and then wait 2 weeks before adding another

Starting with B12

Low B12 symptoms 

b12deficiency.info/signs-an...

With serum B12 result below 500, (Or active B12 below 70) recommended to be taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months.

once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 drops 

healthunlocked.com/thyroidu...

B12 sublingual lozenges 

amazon.co.uk/Jarrow-Methylc...

cytoplan.co.uk/shop-by-prod...

B12 range in U.K. is too wide

Interesting that in this research B12 below 400 is considered inadequate 

healthunlocked.com/thyroidu...

Low folate

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement and continue separate B12

[SlowDragon Administrator]

Request GP test thyroid antibodies for autoimmune thyroid disease

Plus ultrasound scan of thyroid

And request/politely insist on full iron panel test for anaemia including ferritin

if GP unhelpful

Medichecks iron panel test ….iron test - do early morning and fasting

medichecks.com/products/iro...

What’s your diet like

Are you vegetarian or vegan?

Any food intolerances?

Thousands of posts on here about acid reflux

Extremely common hypothyroid symptom due to LOW stomach acid

Thousands of posts on here about low stomach acid 

healthunlocked.com/search/p...

But never assume you have low stomach acid 

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism 

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

 How to test your stomach acid levels 

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

[Wilburlily]

This has been so helpful to me. I will get reading and keep you updated with the blood test results. 😀

[SlowDragon Administrator in reply to Wilburlily]

come back with new post once you get results

[Fizzyinch]

hi,

Agree with all of the comments above. For me it has been an eye opener looking at my vitamin and iron levels as well as the thyroid and other blood tests. I had a suspected prolactinoma (later found to be a non - hormone producing tumour) and I was diagnosed with hypothyroidism at around the same time. I asked for the antibody test as it was not clear to me if the tumour was causing the thyroid issue or not. It’s possible there is both a thyroid and pituitary issue at the same time which is frustrating when GP only uses TSH in my results… I would ask for T3 tests for this reason too.

If you want to chat happy to message. I was diagnosed with tumour last year and had surgery in January . I have Hashimotos and still working through that diagnosis.