Thyroid or Pituitary Problem?

[Amy_O]

Sorry in advance for the long essay! Desperatly hoping for some advice.

I am a 30-year-old female suffering fatigue, brain fog & migraine with visual disturbances since July 2020, therefore I stopped the COCP after a 10-year use (which was prescribed for the management of menorrhagia). Since stopping the COCP I have had irregular periods; 5 in 16 months of which the last one was induced with 5 mg Norethisterone. I have also suffered a rapid central 6 stone weight gain in 16 months & have had difficulty losing weight despite support from an NHS Dietician. Other signs & symptoms I have noticed include facial acne, dry skin, brittle nails, swelling to fingers & tops of feet & systemic muscular pain.

I have a past medical history of menorrhagia (Oct 2011), depression/anxiety (Oct 2017), viral meningitis (May 2020), a herniated L5 disc (Jul 2020), irritable colon (Apr 2021) & NAFLD (Aug 2022). I am currently prescribed Fluoxetine 20mg (mental health) & Amitriptyline 20mg (migraine prevention). I take Tramadol 100mg (back pain) & Sumatriptan 50mg (migraine) on demand when episodes are severe. I supplement Vitamin D, Vitamin B, Omega 3, Biocultures, CoQ10 & have Magnesium & Zinc at bedtime. 6 weeks ago I started on Levothyroxine 25 mcg due low FT4.

I have had a pelvic ultrasound of the ovaries & womb due to absent periods which showed no abnormalities. I have had an MRI head scan due to daily migraines which showed no abnormalities, however the report does not detail any remarks of the pituitary gland. I have had an ultrasound of the thyroid due to low thyroxine levels which showed no abnormalities. A recent eye test including a 3D eye scan has shown no abnormalities, though my prescription has changed in only a few months.

My recent blood tests below have been taken before 9am, both on an empty stomach with no supplements for 1 week & no Levothyroxine for 24 hours prior to the test. In brackets is the labs reference range.

Thyroid: 7am: TSH 3.21 (0.27-4.2), FT4 11.4 (12-22) FT3 4.2 (3.1-6.8) 9am: TSH 3.59 (0.27-4.2) FT4 13.5 (12-22) FT3 6 (3.1-6.8) Thyrogllobulin antibody 12 (<155), Thyroid Peroxidase <9 (<34)

Fem Test: LH 7.3 (14-95.6) FSH 5.48 (4.7-21.5) Oestradiol 279 (222-1959) Testosterone 2.2 (0.29-1.67) Prolactin 430 (102-496)

Adrenal: SHBG 25 (32.4-128) DHEA 1.9 (2.68-9.23) Cortisol 333 (133-537) 24hr Urine Cortisol 50 (<165), Dexamethasone Suppression Test Normal

Inflammation: CRP 7.14 (<3), ESR 27 (1-20)

Liver: ALT 77 (<34) ALP 135 (30-135) GGT 58 (<38) AST 73 (10-32) Hepatitis Negative, Fibrosis 4 Index 1.16 (<1.30) Bilirubin, Albumin, Globulin, Total Protein, Caeruloplasmin, IgA, IgG, IgM in middle of reference range.

Vitamin & Minerals: Ferritin 109 (30-150) Note: 10 days prior was 172, Transferrin Saturation 18 (25-45%) Iron 10.7 (10-30) UIBC 49.5 (13-56) TIBC 60 (45-81) Folate 12.6 (8.83-60.8) Vit B12 72 (37.5-188) Vit D 50 (50-250) Copper 19.7 (11-25) Sodium 136 (133-144), Potassium 4.6 (3.5-5) Calcium 2.28 (2.10-2.70) Inorganic Phosphate 0.98 (0.80-1.40)

Kidneys: Creatine Kinase 132 (25-200) Uric Acid 452 (140-360) Creatine 57 (55-100) Urea & EGFR in middle of reference range.

Cholesterol: Total Cholesterol 5.6 (1.20) Non HDL 4.11 (<4) LDL 3.1 (<3) Triglycerides 2.14 (<2.30)

Diabetes: HbA1c 37 (20-41.9)

Lungs: Serum A1 – Antitrypsin 1.11 (1.10-2.10)

Blood Count: McH 32.2 (26-32.6) Monocyte 0.2 (0.2-0.9) Platelet, McV, Haemoglobin, Haematocrit, RBC, MCHC, WCC, Neutrophil, Lymphocyte, Eosinophil & Basophil in middle of reference range.

Immunity: Anti-tissue Transglutnase 0.1 (0-7), Tissu Transglutaminase IgA 0.3 <6.9) Anti-nuclear Factor, Mitochondri Antibody, Anti Smooth Muscle Autoantibody, Parietal Cell Autoantibodies, Anti LKM-1 Antibody all negative

Stool Tests: H.Pylori Negative, FOB Negative, Calprotectin Content 9 (0-100)

Action I have taken so far includes increasing the dose of Vit D & continuing to work with my Dietician to do a low sugar/fat diet with no fizzy drinks to improve liver function, cholesterol profile & uric acid levels.

I would appreciate thoughts on possible diagnosis, further tests & treatment. Some of my thoughts are:

I thought due to LH, DHEA & FT4 being low, TSH being below 5, my thyroid ultrasound being normal & there being no concerns for thryoid antibodies it would indicate more towards a pituitary problem? Could the viral mengingitis have caused a pituitary dysfunction?

I thought that my low iron levels but fluctuating normal/high ferritin levels alongside normal haemoglobin would not fit the profile of anaemia but suggest another cause of iron deficiency? My diet intake of iron is suffcient & I haven't suffered any menstural bleed in 3 months. Could this be linked to my fatty liver?

I thought the low SHBG & therefore elevated Testosterone could be linked to PCOS, however my LH & FSH ratio has always been very low & balanced with no 3:1 ratio & my Oestrogen has also always been at the lower end of the refence range. I have not noticed any changes in hair growth, no ultrasound abnormalities were found & so I question the likelihood of it being PCOS? Could it again all come back to the pituitary not giving me enough hormones?

Any advice would be massively appreciated. Thank you in advance!

[PurpleNails Administrator]

Standard starting dose is 50mcg.  Only infants, elderly & those with heart conditions need to start on such a low dose - did you ask why so cautions? 

The recent tests - 

7am: TSH 3.21 (0.27-4.2), FT4 11.4 (12-22) FT3 4.2 (3.1-6.8) 

9am: TSH 3.59 (0.27-4.2) FT4 13.5 (12-22) FT3 6 (3.1-6.8) Were these same day?  or comparison of diagnosis / after levo (usually retesting is required after 6 weeks on dose.

Your FT4 is still low all though your FT3 is good. Most feel well when TSH is around 1 - FT4 Top 3rd of range & FT3 over 50% of range. Do you take Levo away from food / drink, medication & supplements? How long a gap do you leave? 

If you have a pituitary issue the TSH may not alter much.

[Amy_O in reply to PurpleNails]

I've had to battle with an Endocrinologist & my GP to prescribe me Levothyroxine. I think they were reluctant to give it. Unsure why when I'm symptomatic. They mentioned it being 'subclinical hypothyroidism'?

The 7am & 9am Thyroid tests were done on the same day, the 7am was a medichecks finger prick test, the 9am was a medichecks venous sample.

I take 25mcg Levothyroxine at 6.30am religiously & wait 4 hours before having any food or supplements. I just drink water.

Why would FT4 be low but TSH & FT3 be within range?

[SlowDragon Administrator in reply to Amy_O]

What were results BEFORE starting on levothyroxine

Which brand is 25mcg

You can eat an hour after Levo

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[Amy_O in reply to SlowDragon]

My thyroid prior to commencing Levothyroxine was TSH 4.57 (0.3-5.5), FT4 7.4 (7.8-14.4), FT3 5 (3.1-6.8) tested at 8am. The TSH has fluctuated from 1.04-5.79 (0.3-5.5) & FT4 from 7.4-8.9 (7.8-14.4) over the past year. The GP kept saying my thyroid levels are normal as some results were within their refenence range. I kept fluctuating in & out of their reference range so they have been reluctant to give me Levothyroxine, hence probably why they have prescibed the pointless 25mcg dose! I have just been told to lose weight & not had much other support than that really. The fatigue & migraines are debilitating, I'm worried I will lose my job as I keep being off sick so just want someone to help me. The Endocrinologist I saw has not shed much light on the possible cause of why my thyroid is low so any ideas what you think it is if not Hashimotos? That's why I was querying a pituitary issue due to low LH with amenorrhea & low DHEA.

The brand of Levothyroxine is Teva.

[SlowDragon Administrator in reply to Amy_O]

You say your ultrasound scan looked “normal “

20% of Hashimoto's patients never have raised antibodies 

healthunlocked.com/thyroidu...

Obviously TSH at 4.57 strongly suggests hypothyroid, especially with BELOW RANGE Ft4 and numerous symptoms

TSH is frequently is extremely unreliable, especially when levels are changing a lot

vast majority of endocrinologists are diabetes specialists and useless for thyroid

Roughly where in U.K. are you

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

[e-mail]

[Amy_O in reply to SlowDragon]

The ultrasound scan of the thyroid said it looked healthy, no nodules, growths, swellings. They checked the lymph nodes by it too. What can a non antibody hashimotos patient ultrasound typically show? What questions should I have asked?

[SlowDragon Administrator in reply to Amy_O]

Unless you suspect you are lactose intolerant, perhaps consider changing brand to Mercury Pharma or Accord for 50mcg

Many people find Levothyroxine brands are not interchangeable.

 Many patients do NOT get on well with Teva brand of Levothyroxine.

Teva contains mannitol as a filler, which seems to be possible cause of problems.

Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

But for some people (usually if lactose intolerant, Teva is by far the best option)

Aristo (currently 100mcg only) is lactose free and mannitol free.

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Mercury Pharma make 25mcg, 50mcg and 100mcg tablets 

Accord only make 50mcg and 100mcg tablets 

Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord  doesn’t make 25mcg tablets

beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

Posts that mention Teva

healthunlocked.com/search/p...

Teva poll

healthunlocked.com/thyroidu...

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

gov.uk/drug-safety-update/l...

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

academic.oup.com/jcem/artic...

Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).

Netherlands (and Germany?) guidelines are for thyroid patients to always get same brand levothyroxine at each prescription 

healthunlocked.com/thyroidu...

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

[PurpleNails Administrator in reply to Amy_O]

The term “sub clinical” is technically defined as mildly elevated TSH but FT4 & FT3 are in range.   

your FT4 was abnormally low which makes you clinically hypothyroid.

Sub clinical is what doctors say when the TSH is not high enough to diagnose in a typical way.

The 7am & 9am Q. are these prior to starting levo? (You need new test)

7am: TSH 3.21 (0.27-4.2), FT4 11.4 (12-22) FT3 4.2 (3.1-6.8)

 9am: TSH 3.59 (0.27-4.2) FT4 13.5 (12-22) FT3 6 (3.1-6.8) 

TSH is a little higher, which is what use expect between 7-9am.  A healthy TSH is said to be 1. 

The FT4 results are fairly similar, but 7am one is below range & subsequently just in range.

Your FT3 is not equally low (compared to FT4) the FT3 if much better in range - the body system tends to prioritise FT3 levels & possibly why TSH is still in range.  

As no sign of thyroid antibodies this could be a pituitary issue.

You need testing 6 weeks after unchanged dose & further dose increases based on FT4 & FT3.

[Amy_O in reply to PurpleNails]

These thyroid bloods were done 20th December 2022 prior to Levothyroxine. I started Levothyroxine 23rd December 2022 so have only been taken it for 4 weeks. I had a ultimate performance blood test with medichecks 2nd January to get everything checked like vitamins, iron etc so that included thryoid again & showed at 9am TSH was 3.5, FT4 12, FT3 4 so pretty much the same result so far.

If it could be a pituitary issue what would you advice the next steps to be? Do I need a specific scan of the pituitary gland? I had a head MRI but could not see any documented details of the piuitary mentioned in the report.

[SlowDragon Administrator in reply to Amy_O]

So you tested too soon

TSH will likely continue to rise

Bloods should be tested at 6-8 week’s minimum after each dose increase

Presumably you will be getting retest via NHS at 6-8 weeks

Make sure to test at 9am or earlier and last dose levothyroxine 24 hours before test

[SlowDragon Administrator]

Standard starter dose levothyroxine is 50mcg

Which brand is your 25mcg tablet

Get dose increase to 50mcg

Bloods should be retested again in 6-8 weeks

ALWAYS test thyroid levels early morning, ideally just before 9am and last dose levothyroxine 24 hours before test

Likely to need several further increases in levothyroxine over coming months

Approx how much do you weight in kilo

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

Typically eventual daily dose levothyroxine is approx 1.6mcg levothyroxine per kilo of your weight

Unless extremely petite, likely to eventually be on at least 100mcg levothyroxine per day

We have to increase dose SLOWLY upwards in 25mcg steps

Meanwhile important that vitamin D, folate, ferritin and B12 are at optimal levels

ferritin looks ok……but Your iron level is terrible

Ferritin can be falsely raised due to inflammation

Will tag SeasideSusie humanbean anc radd to perhaps comment on iron

Exactly what vitamin supplements are you currently taking

Remember to stop taking any supplements that contain biotin 3-5 days before testing as biotin can falsely affect test results

[Amy_O in reply to SlowDragon]

I weigh 117kg. BMI 44. BMI was 25 back in 2020. Do you think my obesity is the cause of the abnornal bloods or could the blood abnormalities be the cause of the obesity? I weigh all my food aiming for 1500kcal a day but struggle to see the pounds drop. Any advice?

[SlowDragon Administrator in reply to Amy_O]

weight gain is the most classic hypothyroid symptom

Makes starting you on just 25mcg even more ludicrous

See/contact GP for next dose increase to 50mcg per day

Try to not change brand of levothyroxine as you increase

Bloods should be retested again in another 6-8 weeks

Levothyroxine does not top up failing thyroid it replaces it so it’s essential to be on high enough dose

We can only increase dose by 25mcg ……wait 6-8 weeks….retest …..increase again

So over next 6-12 months dose will slowly increase

Likely eventual dose levothyroxine if you remained at 117kg would be approx 187mcg levothyroxine per day

As dose is slowly increased over coming months, once you get up over 100mcg levothyroxine per day you’re likely to find you may be able to start to loose some weight

However do NOT diet. Restricting calories or very low carb diets can impair conversion of Levothyroxine (Ft4) to active hormone (Ft3)

[SlowDragon Administrator in reply to Amy_O]

Anything significant happen in 2020…….head trauma or whiplash or Covid ?

Did you loose weight first before gaining?

[Amy_O in reply to SlowDragon]

No covid. Only signfiicant thing in 2020 prior to all these abnormal bloods & symptoms was query viral mengingitis & a herniated lumbar disc. I was a fit paramedic working on the frontline, forward 18 months later & I'm 6 stone heavier, fatigued, not having periods, suffering migraines & systemic muscle pain. I didn't lose weight I just rapidly began to pile on the pounds. My BMI has always been borderline into overweight but I'm quite muscular with lifting patients around all day! I'm unrecognisable now with central obesity. I have puffiness & swelling to bottom of fingers (not around joint) and tops of feet.

[SlowDragon Administrator in reply to Amy_O]

Presumably you had high stress as paramedic in pandemic

[Amy_O in reply to SlowDragon]

My back injury resulted in not being able to work on the ambulance anymore so I now work as a clinician at 111. This has been quite emotional for me grieving the loss of the job I loved, however from the sounds of it I'm not missing much, seems all the ambulance crews just stand in the hospital corridoors now! But that's another conversation haha.

[SlowDragon Administrator]

high cholesterol is directly linked to being hypothyroid

Cholesterol will drop as levothyroxine dose increases

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

[radd]

Amy_O

Haemoglobin levels you say remain at mid-range but low-in-range monocytes and high-in-range MCH with low serum iron is likely indicative of early onset macrocytic anemia. Ferritin can fluctuate with inflammation such as a cold, infection, etc. T/S% is low because serum iron is low. Transferrin correlates with serum iron. 

Many are prescribed the Pill to help regulate periods instead of searching for the root cause which can be low thyroid hormone, and/or high testosterone, etc. Facial acne is caused by high testosterone, and just as some women have ovarian cysts but no symptoms, it is possible to have PCOS symptoms without any visable cysts (which aren’t as such cysts). Usually ovarian follicles containing egg cells are released at ovulation  but abnormally high androgen production can prevent follicles from maturing to release egg cells, so it is these immature follicle sacs accumulating in the ovaries that a scan might (or might not) pick up. 

Your testosterone is over range but your SHBG is under range so indicating an elevated ‘free’ levels. Can you confirm if that testosterone results is for ‘free’ or ‘total’.  Ovarian failure usually presents with high LH & FSH and high testosterone inhibits LH & FSH. Yours are low.

Thyroid antibodies are negative but thyroid hormones are still too low and SlowDragon has already offered good advice. 

Liver enzymes are elevated and commonly raise in the presence of low thyroid hormone.  They usually reverse once thyroid hormone is optimised. 

Prolactin often raises in line with TSH which you say went over range at one point - 1.04-5.79 (0.3-5.5). 

Low thyroid hormone levels can be associated with higher triglycerides /cholesterol, which in turn is associated with higher uric acid levels. There’s a great book called Drop Acid by David Perlmutter. 

I too perviously suffered terrible brain fog and visual disturbances (but no migraines). Your thyroid hormones don't indicate a pituitary problem if TSH was initially high. FT3 often goes high when FT4 is low in an effort to retain wellbeing. I think you just remain under dosed and might find if you can optimise thyroid hormones and get them working effectively many of these symptoms/conditions will reverse.

[Amy_O in reply to radd]

Interesting you mention the macrocytic anemia. My MCH is 32.2 (27-32) & my monocytes 0.2 (0.2-0.8). My transferrin saturation & iron has been going down lower each time I test it since my thyroid issues started. Prior to 2020 all my blood work was within mid reference range. Should I take iron supplements? Should I mention macrocytic anemia to my GP?

I was prescribed the pill for heavy periods in school. I only stopped it due to the onset of migraine with aura. I have thought maybe the pill has masked a underlying period disorder with the withdrawal bleeds being not a 'real' period. Could it therefore be PCOS aswell as the thryoid problem? My testosterone 2.2 (0.29-1.67) & my free testosterone 0.047 (0-0.03). My testosterone, free testosterone & SHBG have fluctuated in & out of the reference range & I have times when acne presents itself more & clears up so assume linked. Any advice moving forward with this as GP has basically ruled out PCOS, thinks my thryoid isn't 'that bad' so fighting a losing battle here. Should I approach a gynaecologist instead? I have only seen a Endocrinologist.

Thank you for your advice. Honestly messages on this forum keep me going.

[radd]

Amy_O

Thyroid hormone lab results have so many different presentations that even endocrinologists struggle, let alone GP’s and one of the biggest problems our forum members experience is being kept under dosed through results being  misinterpreted or medics beholden to TSH dosing. 

Yes, hypothyroidism and PCOS are closely associated (many doctors don’t recognise this either). 

Thyroid disorders and polycystic ovary syndrome: An emerging relationship - ncbi.nlm.nih.gov/pmc/articl...

ThyroidUK - PCOS thyroiduk.org/related-condi...

Hypothyroidism and anaemia are connected also as low thyroid hormone slows metabolism, thereby decreasing erythropoiesis, as well as causing malabsorption problems.

ThyroidUK holds a list of private endos that members have reported having good experiences with. You can request a copy from them. thyroiduk.org/help-and-supp...

Alternatively you could write a new post asking members experience of PCOS with hypothyroidism.