not yet properly diagnosed but really struggling with mental effects

[Heybella]

hi all,

I’m really desperate for some advice and support. I have posted a couple of times before and I’m waiting for my endo appnt in April.

- had several years of unexplained fatigue & flu like symptoms which would come and go. Subsequently given diagnosis of fibro

- last year after 3 bouts of covid within 6 months; took a medichecks thyroid panel which revealed elevated TPO

- several bloodtests over the past year have looked ok but my TSH is in the low end of normal

- recent stomach issues led to bloodtests which revealed TSH of 0.03 and FT3 just over and FT4 within top end of range

- prescribed Carbimazole by doc within suspected hyper / graves (but I know this cannot be diagnosed without appropriate testing). I decided to not take Carbimazole at first thinking this diagnosis most likely incorrect and current state could be transient

- my thoughts were similar to other replies I’d received that this could be Hashis and it could be a transient hyper phase

- symptoms worsened by way of severe mental health deterioration. panic attacks, feeling like going to die. I thought level may be getting worse so decide to try carbi.

- in the following 6-7 days on carbi, a loss of appetite, severe nausea, a complete deterioration of mental symptoms, feeling so anxious, crawling out of my skin. Calls to 111, my GP, thoughts of feeling like I’m going to die. Started to suffer with severe hypnic jerks all night when trying to sleep, as soon as I closed my eyes and breathing started to slow - a feeling of adrenaline rush, tingling in arms, heart pounding. 2 days of no sleep whatsoever Woken out of my sleep so violently one night, I ended up calling 111 who sent an ambulance at 4am. By the time they arrived I had calmed a little.

- stopped carbi immediately. Not if it was a bad reaction causing me to feel so bad. Did a medichecks test again which gave results as attached - TSH has dropped but others are just out of or within range. Went to docs who has pretty written this all off as anxiety but this feels so different to any I have felt before. ECG normal & blood tests repeated. I haven’t had results yet but was told by reception that they are back and they look similar to previous.

- heart rate is slightly elevated, especially today.

I have also had mild intermittent pain in the thyroid area

My apologies if any of this post is inappropriate or needs to be taken down. I am just absolutely desperate for some support of advice. I feel like I shouldn’t be feeling this bad if my levels are not wildly out range?

I feel hopeless and depressed, as well as extremely anxious. The only thing calming me down is diazepam (which have never ever taken before).

Any words of comfort or advice would be most appreciated

[SlowDragon Administrator]

Have you retested vitamin levels recently

What vitamin supplements are you taking

Have you tried strictly gluten free diet

Did GP also prescribe propranolol?

This is a beta blocker can help lower anxiety and can slow down uptake and conversion of thyroid hormones

BUT propranolol can NOT be prescribed for anyone with asthma

[Heybella in reply to SlowDragon]

Thank you SlowDragon

The most recent GP blood test included B12 but I don’t have the result yet (it is back but the docs haven’t shared yet)

I think I will order other tests privately - Vitamin D etc?

In the past couple of weeks I have been taking B12 Cyanocobalamin, D with K2 (4000 I think)

I have been loosely gluten free since last year (after the positive TPO) but I guess not as strict as I could be (it’s expensive!) but I’ve been trying to diet in the past year so was eating lots of chicken, protein type things (so quite low gluten)

I couldn’t have propranolol because I have asthma - although it is very mild (only needed blue inhaler really if I’ve been ill with chest/ cold type virus) - but all the same couldn’t have it.

Thank you SlowDragon i appreciate the reply

[Sparklingsunshine in reply to Heybella]

Propranolol is a no no for asthma, yet a GP I saw prescribed it anyway for me for migraine prevention, even though I was hypo at the time. Took one, it caused asthma flare so another drug on my forbidden list 🤦‍♀️

[Buddy195 Administrator]

I would 100% push for correct antibody tests before taking carbimazole. I was incorrectly diagnosed as Graves (largely on symptoms- eg palpitations, weight loss, tremor, heightened anxiety).

 Graves Disease (hyperthyroidism) needs to be confirmed via positive TRab or TSI:

TRab

TSH receptor antibodies

TSI

Thyroid-Stimulating Immunoglobulin

TPO & TG antibodies may be Graves or Hashimotos.

 TPOab

Thyroid Peroxidase antibodies

TGab

Thyroglobulin antibodies

I did take propranolol to help with palpitations, as I ended up in A and E on 2 occasions with extremely fast pulse etc. Fully understand that you can’t have this medication with asthma however.

By far my worst symptom was the spike in anxiety. GP diagnosed‘heath anxiety’ & sent me to a psychotherapist for CBT. Luckily joining this forum helped me understand my anxiety spike was related to my thyroid struggling. Getting key thyroid vitamins optimal and being GF did help improve my symptoms.

[Heybella in reply to Buddy195]

Thank you Buddy that’s really helpful. I’m sorry you went through that - hope you feel better now?

Yes, I have a suspicion that this could be similar - but who knows?!

I have my endo appointment in mid April.

Can I ask what your diagnosis is? And how long your hyper lasted?

The anxiety is by far the worst symptom for me - it’s like nothing I’ve ever experience before and it’s scary. 😔

Thanks for replying 😊

[Buddy195 Administrator]

I was initially misdiagnosed as hyper/ Graves for almost a year. I followed forum advice to have correct antibodies tested. My TSH then started to rise & I was offered Levothyroxine. I saw a steady improvement in my symptoms since slowly adding T3 to my Levothyroxine dose(as I was a poor converter), taking magnesium daily (I find dosing early evening helps me relax), being gluten free & practising mindfulness, Pilates and journalling (ie writing positive thoughts).

I’m so much better than I was, although did have a dip with peri menopause, when I needed to add HRT.

I need my thyroid medication & key vitamins to be optimal and if I need to make adjustments (either increase or decrease) I do this super slowly as my anxiety levels can flare.

[Heybella in reply to Buddy195]

Thank you Buddy195 , that’s really helpful 😊 I’m glad you were able to get better!

Were you blood test results at the time reflecting Graves/hyper?

I think I might order those TRab tests myself (I think Medichecks offer them).

I just feel quite overwhelmed and confused and actually really quite depressed with this 😔

I am 39 female and so I had originally put some symptoms down to hormones changing, being unfit & a bit of anxiety (and too much Diet Coke!)

It’s really taken a toll on my mental health - not getting dressed, or leaving the house. Etc it’s quite shocking.

Thank you for replying to me

[Buddy195 Administrator in reply to Heybella]

Yes, my initial bloods did point to hyper and this, together with ‘hyper like’ symptoms led to endo diagnosis of Graves/ later TED.

I fully understand how thyroid symptoms can affect your mental health. Hang in there; you are not alone… we are here to help and support 🦋

[Heybella in reply to Buddy195]

Thank you so much Buddy195 😊😊

[humanbean]

I've never knowingly been hyperthyroid, transient or otherwise. I'm hypothyroid.

I had anxiety and depression for years, and would panic easily.

I was also extremely low in iron and ferritin (iron stores). Ask your doctor to test your ferritin (they are very unlikely to test your serum iron). You could also ask for a Full Blood Count to be tested. It includes a test of haemoglobin which is under range if you are anaemic. Note that people can have iron deficiency without anaemia but the deficiency needs to be treated anyway.

After improving my iron/ferritin my depression dramatically reduced and my anxiety disappeared.

Other nutrient deficiencies can cause similar problems e.g. low Vitamin B12 and low folate, so ask for them to be tested as well.

[Heybella in reply to humanbean]

Thank you humanbean I had a full blood count done recently. All looked ok, but I guess that’s by NHS ranges. I’ll post this

Thank you for replying 😊

[Heybella]

full blood count

Full blood count - 7 Feb

[Heybella in reply to Heybella]

serum ferritin

Ferritin

[humanbean in reply to Heybella]

Your Haemoglobin and Red Blood Cell Count are well within range, which suggests that you aren't anaemic.

Your Mean Cell Volume (MCV) is approx 41% through the reference range. If it was low it would suggest your red blood cells were small. This would imply you had low iron. If it was high it would suggest your red blood cells were large. This would imply that your B12 and/or your folate were low. If you had a combination of these low levels your MCV would probably not be helpful.

Your Ferritin is approx 38% through the range which is not bad, and suggests that you are unlikely to be suffering from iron deficiency or anaemia.

[Heybella in reply to humanbean]

Thank you humanbean I really appreciate you looking at these (and educating me!), thank you