Am I going mad?

[Sleepysparrow]

Hi! I've had so much helpful information from this forum and made copious notes over the last few weeks, I was determined I could get by without asking for help, but no. I'm so upset, after what I've decided is my last visit to the GP as I'm fed up of being fobbed off and coming out like a gibbering wreck. I've been suffering with symptoms for the last 12 years, am hardly recognisable as the person I was, feel sorry for my long suffering husband. I feel like I'm going mad. I was diagnosed with Chronic Fatigue Sydndrome in 2011 after all blood tests came back 'within the range.' Since then I've had so many TATT blood tests (Tired all the Time, it's what they put on your blood form) I've lost count. My Mum had underactive thyroid. I'm familiar with the symptoms. I had to fight for her over the years.

Medichecks results from Feb 2020

TSH 3.88 mIU/L (Range 0.27 - 4.2)

Free T3 4.48 pmol/L (Range 3.1 - 6.8)

Free Thyroxine 16.800 pmol/L (Range 12 -22)

Thyroglobulin Antibodies 423.000 kIU/L (Range <115)

Thyroid Peroxidase Antibodies 187 kIU/L

I took this to the GP who did not acknowledge it at all. She did send me to see an Endo who again did not acknowledge my results but tested for sleep apnea. The results below are those taken by the Endo. Everything fine according to him.

NHS blood test results October 2021

TSH 4.14 mU/L (Range 0.35 - 5.50)

Free T4 11.0 pmol/L (Range 7.0 - 17.0)

Free T3 3.9 pmol/L (3.5 - 6.5)

Ferritin 13 ug/L (Range 15 - 300)

Folate 5.9 ug/L (Range >3.0)

Vit D 53

B12 258 ng/L (150 - 900)

Medichecks Results May 2023 - again fed up with feeling rubbish all the time so paid for another test.

TSH 6mIU/L (Range 0.27 - 4.2)

Free T3 4.6 pmol/L (Range 3.1 - 6.8)

Free Thyroxine 16.5 pmol/L (Range 12 -22)

Thyroglobulin Antibodies 246 kIUL/L (Range 0 -115)

Thyroid Peroxidase Antibodies 126.8 (Range 0 -34)

Ferritin 35 ug/L (Range 30 - 150)

Folate - Serum 21.5 nmol/L (Range 8.83 - 60.8)

B12 Active 124 pmol/L (Range 37.5 - 188)

Vit D 62 nmol/L (Range 50 -250)

NHS blood test results May 2023 - after e-consult encouraged by my husband as I had a bit of a melt down (prescribed antidepressents (not taken) and HRT - which I've now been on for 6 weeks.

TSH 5.27 mU/L (0.35 - 5.50)

Free T4 11.9 pmol/L (7.0 -17.0)

I think maybe the HRT has finally begun to help just a little?

NHS tests after an e-consult for severe muscle ache in legs affecting my ability to walk and sleep and fatigue - June 2023

Many things tested for but main results are -

TSH 2.99 mU/L (0.35 - 5.50)

Free T4 9.5 pmol/L (7 - 17)

Ferritin 13 ug/L (15 - 300)

Folate 7.2

B12 261 ng/L

Vit D 66 nmol/L

July 2023 - First face to face visit with GP since 2020 following the above results. Prescribed ferrous fumarate tablets (210mg, one twice a day) to increase ferritin. Advised to take for 3 months then have blood test for levels and at the same time to test for celiac disease. He also sent a kit for stool sample to check for blood loss - possible reason for low iron stores. He wouldn't acknowledge the Medichecks results or the antibodies results and when I suggested thyroid issues could be at the bottom of everything, including poor iron stores and all the other symptoms I have, he said your thyroid is fine. I asked if I should take vitamin C with iron tablets and he said not necessary. He didn't want me to hang my hat on it being thyroid issues!!!! I left in tears.

I have all the classic symptoms of underactive thyroid. Plus a large gall stone, chronic constipation, hardly any eyebrow, etc.

Many apologies in advance for all the data and all the text. I think I need to take magnesium, vit D, B12, though test results are all 'normal'? I will go gluten free but will wait until after I've had the test for celiac disease?

Thanks for all your help and advice. Where would we be without you all?

[SeasideSusie Remembering]

Sleepysparrow

I have all the classic symptoms of underactive thyroid.

Well, that's not surprising, you have autoimmune thyroid disease, aka Hashimoto's, which is the most common cause of hypothyroidism. Your results show subclinical hypothyroidism (over range TSH) with raised antibodies. Shame on your GP and endo for ignoring your raised antibodies. They only have to look at the NICE guidelines:

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

Tests for people with confirmed subclinical hypothyroidism

Adults

1.5.1 Consider measuring TPOAbs for adults with TSH levels above the reference range, but do not repeat TPOAbs testing.

Treating subclinical hypothyroidism

1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and symptoms of hypothyroidism.

So you could be started on Levo.

Taking your latest results:

Ferritin 13 ug/L (15 - 300)

Still dire, you could suggest an iron infusion, not sure if that would be allowed but it would raise your ferritin much quicker than tablets.

Folate 7.2

Need a range but if no range then we suggest aiming for high teens or twenty. This is too low but not deficiency.

B12 261 ng/L. ng/L is the same as pg/ml mentioned below.

Very low. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Many people with B12 in the 300s have been found to need B12 injections. Do you have any signs of B12 deficiency – check here:

b12deficiency.info/signs-an...

b12d.org/submit/document?id=46

If you do then list them to discuss with your GP and ask for testing for B12 deficiency and Pernicious Anaemia. Don't let GP fob you off with the fact that your level is within range, it's symptoms not numbers that count with B12. Do not take any B12 supplements or folic acid/folate/B Complex supplements before further testing of B12 as this will mask signs of B12 deficiency and skew results and if you have B12 deficiency and it is not detected and treated then this could affect your nervous system. B12 deficiency should be treated before starting folic acid because folic acid can sometimes improve your symptoms so much that is masks B12 deficiency.

Vit D 66 nmol/L

You might want to check out a recent post that I wrote about Vit D and supplementing:

healthunlocked.com/thyroidu...

and you can check out the link to how to work out the dose you need to increase your current level to the recommended level.

Your current level of 66nmol/L = 26.4ng/ml

On the Vit D Council's website

web.archive.org/web/2019070...

you would scroll down to the 3rd table

My level is between 20-30 ng/ml

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

So now you look at how much is needed to reach 50ng/ml and you'll see that they suggest 3,700iu per day, nearest is 4,000iu, cheapest is to buy 5,000iu and take 6 days a week instead of 7.

Retest after 3 months and remember to take D3's important cofactors magnesium and Vit K2-MK7. Suggestions for supplements can be made, please ask.

[Sleepysparrow in reply to SeasideSusie]

Thanks so much for your helpful reply. I’m utterly exhausted and really can’t face another GP visit. I’ll look into the extra vits and just hope the ferritin tablets kick in at some point. Sounds like I’ll have to wait for my thyroid to be completely shot before any acknowledgment of thyroid issues comes. Meantime I’ll keep up with the supportive and helpful advice on this forum. Thanks again.😊

[tattybogle]

GP very unlikely to offer levo until they have NHS evidence of over range TSH . even with positive antibodies this still applies.

They do need 2 over range TSH results from the NHS , in order to consider levo.

the medichecks one won't count and since the latest NHS result is now come down to 2.9 , the GP can't really consider prescribing levo at the moment without really sticking his neck out and risking getting himself into bother .

but it's very unhelpful of him not to not even acknowledge the positive antibodies and offer to confirm them via NHs testing .... he has good enough grounds to do it , based on the private test , and that there's clearly something 'not quite right' thyroid wise ..... TSH doesn't just pop up to 4/5/6 for the fun of it...... it is usually very stable about 1/2 ish in most people .. your positive antibodies / and relatively high TSH for a few yrs and one over range result do all point very clearly to "thyroid problem being quite likely"

nhs guidelines don't tell him he 'should' test for antibodies himself unless TSH is over range , and unfortunately you've never had an NHS over range TSH test . so 'technically' he isn't supposed to test them yet , but it's just a flippin blood test, he could that do if he actually wanted to be helpful..... having them officially on record would at least trigger 'annual TSH testing to keep an eye out for subclinical hypothyroidism developing'.

i do understand that they don't want to start people on levo unnecessarily and without convincing evidence ....especially when menopause could be responsible for some symptoms ...... but it would be more honest and much kinder to say "i can't give it to you yet , but your antibodies are positive, your TSH is a bit off , and your symptoms fit, so we should keep an eye on it"

it is so damaging to mental health to be continually told "there's nothing to see here", when plainly there is .

Hopefully HRT helps a bit.

[Sleepysparrow in reply to tattybogle]

Thanks so much for your supportive reply. Yes, just a bit of acknowledgment from GPs that there are some thyroid issues would be helpful. It doesn’t help that I speak to a different GP at each appointment. I can’t face another appointment. I’m utterly exhausted, that’s probably due to the low ferritin result? He didn’t seem too concerned about that. Hopefully the tablets will kick in at some point? Meanwhile I’ll sort out some supplements myself. Thanks again.

[gabkad]

Hashimoto antibodies have an adverse effect on the reflex that causes the gall bladder to eject its contents into the duodenum. What are the doctor's waiting for if you have a large gallstone? Until it blocks the common bile duct and you get pancreatitis? What's going on here?

[Sleepysparrow in reply to gabkad]

Thanks for your response. GPs don’t seem to join the dots and certainly don’t relate anything to the thyroid. I’m on a 2yr waiting list to see a consultant about removing the gall bladder. If I’ve dared to suggest my issues and symptoms may be related to thyroid issues , including my very low iron stores, they just ignore me, ‘you’re TSH is normal’. Thank heavens for this place!