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!
Written by
Hillz2000
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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
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
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!
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
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
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
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.
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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Can anyone help with these test results please
Why can't the NHS see the bigger picture!
Just got updated thyroid hormone results — see why I'm tired. 
Results ok but hypo symptoms
