Help with these results and symptoms - tired of... - Thyroid UK

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Help with these results and symptoms - tired of 'wait and see' approach of NHS

Hillz2000
Hillz2000

Hi Everyone

As my profile outlines, I have been suffering from underactive symptoms for a long time and am repeatedly tested and only ever offered a ‘wait and see’ approach. I have recently seen my GP (repeatedly), had an ulstrasound and a CT scan and an appointment with a Private Endo (who I suspect is a diabetes speciliast and not a Thyroid expert) and been told that I am potetially ‘hyper’ if anything – this is obviously based on TSH and doesn’t take in to account the lower than opitmal T4 and T3 and certainly doesn’t take my symptoms in to consideration. From looking at my results (in my profile) My feeling is that 1. I have Hashis ( this has been confirmed by the TPO and so too by the docs) but that also there may be a secondary/pituitary hypothyroidism scenario at play i.e suppressed TSH with low/normal T3 and T4. What I am looking for is for you guys ot give my your thoughts and anything that might help me get my docs to investigate this conclusion as opposed to ‘wait and see’ or ‘you’re hyper’…because I am at my wits end and feel nothing even remotely hyper in my opinion.

I am currently not medicated in any way.

My symptoms range includes:

short term memory issues

fatigue - want to sleep a lot

Pain in arms and hands / carpal tunnel

Muscle weakness

enlarged thyroid / confirmed multi-nodular goitre

Slow movement

Pressure on neck

Feeling drained

Snoring / sleep apnoea

voice deepening & croaky

hair thickening and falling out

hearing impaired

nails brittle and peelingsensitivity to hot and cold temps

eyebrows falling out (tattoo fillers)

constipation

Aching bones and jointsweight gain (approx 3 stone in last 2 years)

Sore feet (plantar fascitis)

inability to lose weight (even when dieting and exercising)

Water retention

confusion/brain fog

Depression

Puffy face

Dry eyes

No sex drive

Heavy periods

Accelerated Skin aging / thickening (face and chest in particular)itchy ears

I have what I can only describe as cyclical flar-ups that are mostly worsening of the above:

Skin rash on face - nose / cheeks / eyebrows

Itchy scalp with scabbing

aching bones exacerbates

heart beating hard in chest (not faster)

headaches

anxiety

irritable

Sleep disturbance

Swollen hands and feet

Shooting pains- legs /arms /feet/ hands.

Thank you in advance!

6 Replies
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SlowDragon
SlowDragonAdministrator

You do not appear to have had vitamin D, folate, ferritin and B12 tested

These are very often too low due to Hashimoto's. Essential to test and supplement to bring up to optimal levels. This can then increase TSH as having optimal vitamins helps Thyroid hormones work well

Low vitamins often causes low TSH

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid 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, GP will be unaware)

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels. Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

drknews.com/changing-your-d...

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Come back with new post once you have results and ranges on vitamins

Hillz2000
Hillz2000 in reply to SlowDragon

Hi SlowDragon, I've updated my profile with other blood test results including folate, B12 and the Coeliac profile. My B12 is within range but definitely low enough to be looked at i think. I've had my ferritin tested too but cant find the results - but i do know that it was at the top end of the healthy range. I have experimented with gluten free diet and felt no change.

I requested the RT3, TT4 and TG tests but was told no by GP. Unfortunately having spent the money on the private endo appointment ( and two children in full time childcare) I just dont have the cash to pay for more private tests/Blue Horizon etc .

I am awaiting an NHS appointment in September to see another Endo, so what I want to do now is have you guys (who know so much its amazing!) have a look at what we do know so far and give an indication as to what you think might be the overall picture and the tests I need to beg the hospital to do. I basically have to tell them what i think it is and give them the clinical business case for investigating it. It's ridiculous.

Ultimately they won't test RT3, TT4 and TG unless they think it is 'XYZ' and need the tests simply to confirm their diagnosis. They also wont look at it being pituitary related because it is so rare and poorly understood - so if anyone has experience of or in Pituitary/Secondary hypo and thinks my suppressed TSH and lowish T4/T3 could be indiciative of that, I'd love to hear about it because seeing that evidence and similar cases might get the docs attention. If i go in and have nothing for them they will scratch their heads and say 'we don't know whats wrong with you. you dont fit neatly into a box'. I have been through this same cycle every couple of years for the past 15 so I can write the script!

SlowDragon
SlowDragonAdministrator in reply to Hillz2000

Your folate and B12 are both very low. So first step is possibly to take a daily good quality vitamin B complex, one with folate in, not folic acid

Eg Igennus Super B or Jarrow B-right

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

If you have symptoms of low B12 you may also need sublingual B12 for a few months as well

b12deficiency.info/signs-an...

Couldn't see a vitamin D result

Absolutely essential to test this - only £29 via NHS postal kit if GP won't test. Your calcium is below range, this very strongly suggests low vitamin D. Calcium levels naturally increase as vitamin D levels increase

vitamindtest.org.uk

Getting B vitamins and vitamin D optimal are likely to increase TSH so that your thyroid problems are recognised

Vitamin D aim to increase to around 100nmol

Gluten free diet may not give any immediate noticeable improvement, but long term it can slowly heal gut and improve nutrient levels

No point at all testing RT3. It doesn't tell you much. NHS never offer it. Only relevant if on high above range FT4 and low FT3

TT4 is useful when on Levothyroxine, but only available on private tests

Thyroglobulin antibodies are usually tested on NHS if TPO are high, which your are. But you already know you have Hashimoto's from high TPO so it's largely irrelevant and not worth fussing about

With Hashimoto's fair number of people are dairy intolerant. Something to consider too

thyroidpharmacist.com/artic...

Only add one supplement at a time or make one change at a time or you don't know which is helping

Come back on new post with vitamin D result once you have it.

Low vitamins often results in low TSH regardless of FT4 and FT3

Hillz2000
Hillz2000 in reply to SlowDragon

Thanks SlowDragon. Really appreciate the effort you put into your responses !

After looking at your recent post about your mother I have come back to this one to reply.

You are right about endos - they are all diabetes specialists and do not seem to know much about thyroid. Their justification is the massive increase in the number of people with diabetes.

T3 is the active thyroid hormone which controls almost every cell in the body. Your is in the lower part of the normal range so would not be recognized as hypothyroid.

Your family history of hypothyroidism points to a genetic condition - thyroid hormone resistance, also known as impaired sensitivity to thyroid hormone. This could explain your symptoms and your goitre.

The condition requires high Free T3 levels to overcome the resistance and the recommended treatment is a single daily dose of T3. I noticed that you had requested suppliers of T3 - did you get some responses?

You are very unlikely to find a doctor willing to help, so like many people on this forum you have to consider self medication.

Hillz2000
Hillz2000 in reply to HughH

Hi HughH thank you for taking the time to read the post about my mum, then reading my posts about me. I was actually reading about the hereditary resistance issue earlier for the first time! I will be bringing it up with new hospital Endo appt next week. I did get some msgs about T3 suppliers but they didn’t seem like legit sources so haven’t ordered anything. If you have any legit sources I’d very much welcome your advice in a private msg.

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