Palpitations... no like!

[Jooju2004]

Sorry for another post so soon!

TSH 2.32 (I felt well when it was 0.01)

FT4 13 (I felt well when it was 21)

The reason I got my bloods done was I wasn’t sure if I was over medicated as I’ve been having palpitations and feeling stressy, although also very tired and emotional.

Those levels aren’t exactly terrible - but the palpitations are driving me mad! I know my GP would increase my levo dose if I ask (appointment on 21st) - am I saying I want more or need less levo? I’m only on 75mcg.

Can I get palpitations if I’m hypo? Can I be ‘that’ hypo with those levels? Can we even tell if I’m hypo at this point or do I need the full profile? (I’m totally open to getting the private testing done but I’ve been fine til now so never bothered).

Any advice gratefully received - thanks all! X

[SlowDragon Administrator]

Yes palpitations can be due to under medication

Your TSH is too high and FT4 is too low

75mcg is a low dose

Request 25mcg dose increase

Most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

You will need to get bloods retested 6-8 weeks after each dose increase

You really need vitamins retested. I note you still get most prescribed but as now under medicated they may have dropped again

Do you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies?

If not had antibodies tested these need testing

If you do have Hashimoto's, Are you on strictly gluten free diet?

[Jooju2004 in reply to SlowDragon]

I think I’m a bit rubbish - I kind of assumed so have Hashimoto’s but that’s only because I read somewhere that most hypo cases are - I don’t think they’ve ever been tested.

I don’t do strictly gluten free but since June I’ve been on a really clean diet that has very little gluten in it. Since I ‘stabilised’ in May (ish) my stomach acid has increased so much that I hardly ever use omeprazole and I haven’t had gaviscon in months - so I think my absorption is generally better but you’re right, I should check where my vitamins are at compared to last time. I’ll ask, and also re thyroid antibodies test, when I go for my medication review appointment on 21st.

I think I’m just a bit gutted - I thought I had it nailed and now realise it’s never going to be that simple - much more of an ongoing process.

Thank you so much - you’ve put my mind at rest that an increase is the right thing.

You give so much of your time to advise on here - not sure where we would be without your input! x

[Lovecake in reply to Jooju2004]

I read that you shouldn’t be on omeprazole if you’re taking Levothyroxine.

And omeprazole reduces stomach acid - doesn’t it?

Check your leaflet with the Thyroxine. I stopped taking omeprazole as soon as I was on Thyroxine. (From Reading leaflet, not by GP) I take a good pro biotic in the morning, seems to help lots.

[Jooju2004 in reply to Lovecake]

Yeah I’d been on it for years (when my GP took 3 years to diagnose my thyroid problem!) - we all thought I had too much stomach acid but it’s only the last year that we now understand it was the opposite. I’m so much better now, I used to be on omeprazole and gaviscon daily but couldn’t drink or eat rich foods.

This last 8 months I’ve felt healthier and happier than I have in years - and most of that is due to the info and help I’ve had from this site! x

[Lovecake in reply to Jooju2004]

Me too. And my cousin went through hell too. My sister has just been diagnosed. At least we have some (hopefully) correct and helpful info we can pass on.

Got to focus on getting even better and feeling good.

But I’m still rather brassed off with all the misdiagnosis and suffering for me (and my family to worry about too).

Take care 🌻

[Jooju2004 in reply to Lovecake]

Oh god me too! I’m so cross that they got me into the mess I was in and that it took so long to feel well again! Just so grateful this site exists as my GP wouldn’t have ever dealt with my vitamin deficiencies or listened to me! x

[Lovecake in reply to Jooju2004]

Unfortunately GPs are not good with vitamins etc.

When my folate came back really low a GP said I’ll give you some folic acid, but I don’t agree with people taking vitamins long term, you should get all you need from a good varied diet.

My diet has always been pretty good, it’s even better now (not perfect). She was even surprised when my vitD kept dropping even though I was forcing myself to sit in the sun (I get migraines).

I was just about training her (obvs kidding 😉) and she left the surgery. The one I’m stuck with just freaks out over a low TSH (when I’m on a low dose of t3 with my T4) so I can’t go and see her about anything or she just glazes over and focuses on the TSH.

Hope I’m never ill or I’ll just have to hope I see a new GP.

This forum is brilliant. Thank you to all who contribute (if any are reading this) you should all be on the “nice” list this Christmas. 🎄

[Domino06]

Do you feel paniky, are your stools loose or going too many times? Look at your symptoms.

[Jooju2004 in reply to Domino06]

This is the issue! My symptoms are either hyper or hypo🤦🏼‍♀️

I’m on iron tablets so can’t remember what a loose stool is like lol... but every other symptom could be attributed to too much levo or not enough, which is helpful.

I think I’ll go with Slow Dragon on this ... on paper those levels are hypo and I function better when TSH is lower and FT4 is higher. If an increased dose doesn’t help the palpitations etc then i’ll have a rethink... and be back on here for even more advice x

[TSH110]

Get a dose increase. I got worst angina the higher my TSH was and you don’t want that - you want your heart working as smoothy as possible. If you felt better at the lower TSH why suffer? A TSH of over 2 is far too high if you are hypothyroid as indicated by your symptoms. The aim of treatment is to get you asymptomatic!

I got a lot of symptoms normally associated with hyperthyroidism and I was as thin as a rake with no goitre but I was very overtly hypothyroid. I also got hypothyroid symptoms like feeling very cold, dullness of mind, exhaustion. I would have short bouts of hyperthyroidism and turn into a hypermaniac with classic hyperthyroid symptoms (awful) 😳 but mostly I was hypothyroid with mixed symptoms. Constipation is a strong indicator that your hypothyroidism is not being adequately controlled and was another symptom I had.

[Jooju2004 in reply to TSH110]

Thank you - I will! Those short bouts of hypermania sound to be no fun at all😳 hope you’re stable now?! x

[TSH110 in reply to Jooju2004]

I would be completely exhausted for weeks and suddenly have so much energy I would jump up and run ten miles really fast with virtually no effort, I could explode in a rage at the slightest provocation and probably no provocation at all, I lost my proprioception and would walk into people on the street - very embarrassing - they thought I was being plain nasty and shoving my way through I smashed plates and dropped things all the time and had to stop cycling as I no longer felt I was safe . It was very unpleasant; once it stopped I’d think “mmm that was a bit odd I seem to be going mad!” but soon I’d be so hypo again even thinking was glacial so it was a case of getting through each moment as best I could - reflective contemplation was far too complex to handle let alone realising I was very seriously ill and trying to get help. It was a horrendous roller coaster ride of uncontrollable emotions, dreadful debilitating symptoms and episodes of what I can only describe as insanity with terrifying hallucinations. Yelling one minute weeping the next and a short period of calm before it all revved up again.

I mustered up all my courage in the end and went to a new doctors (I believed I was a hypochondriac and was imagining all the symptoms and had given up going to the doctors with one darn problem after another - all hypothyroid symptoms but I was assured it was just the menopause but the menopause had been and gone by them yet my symptoms were worse than ever) and just told him I was hypothyroid and needed medication. Once I explained a bit about my family history (mother and sister both hypothyroid and grandmother) he was really good did all the tests and saved my life. First tests came back hyperthyroid I told him they had mixed up the samples and that was not my result! They did another test and from hyper I had plummeted into very seriously overt hypo in just a week or so. I think that the thyroid had died with that final mega hyper bout it came on after the first hyper blood result. It was very very grim stuff. He called me and said I must start the medication immediately no delays whatsoever, it was 2 days off Xmas. I was so cold I though I was going to freeze to death, I had been cold for decades but nothing as terrible as this, I remember lying in bed thinking ‘you have had it’ then longing to die so my suffering would cease. I was amazed to wake up the next day just a tiny bit less cold after only the first tablet of Levothyroxine I took - just in the nick of time. In some ways I feel much better than I have done for many years as my chronic depression has disappeared and I am a much more positive person. I never felt well on Levo (have DOI2 mutation) but I feel pretty good on NDT. My heart got damaged so I can get angina but far less that when I was unmedicated or on Levothyroxine and I have developed high blood pressure which I believe is probably related to being untreated for so long, although it could be hereditary from my fathers side. I left a truly awful employer, retrained and now do an active job I love, lots of exercise and I eat well - I grow a lot of stuff on my allotment - I really enjoy my life - I regard each day as a bonus that I must make the most of. It has given me huge insight into the disorder especially the latter phases, which most people thankfully do not experience -shockingly, there are some here with similar tales so I am by no means alone. I am a more compassionate person as a result of what I have been through. I do my best to use it to try and help others here. I helped one friend get a diagnosis of hyperthyroidism I could tell looking at her she was not at all well and knew it was a thyroid problem. She is a lot better now. Odd to think good can come out of such a nightmarish experience.

Were it not for that kind doctor I would not be here now.

[Jooju2004 in reply to TSH110]

Bless you! For what you’ve been through and your attitude to it!! I’m so glad you finally got the help you needed... albeit it just in the nick of time. When the smallest little gland can nearly kill you! Time for much more GP training and understanding! x