Any advice

[Compostella1]

Hi, I was diagnosed with hashis and hypothyroidism 18 months ago and since then I have been unable to tolerate any medications prescribed. levo, armour thyroid, np thyroid. I have all the hypo symptoms when in and off medication.. cold, fatigue, foggy brain, numbness and tingling in hands and feet, anxiety (not for a while) , insomnia. I find the palpitations the worst- I have been investigated from a cardiology point of view and they’ve found nothing Altho it was jst a heart monitor and bloods.

When I have ever tried to increase the medications the palpitations go completely berserk. I am currently off everything since last summer.. I tried Thorne supplements and again it was like I was taking too much and had palpitations.

I really am at a loss at this stage. My bloods are watching GP ranges now.. and I’ve been off meds a long time.. when I was first diagnosed my bloods were all over the place.. it seems something SI kind of regulating but the symptoms are pretty bad.. and worse than ever! I do have some good days and I had a settled period round Christmas but it jst seems to come in cycles.

Has anyone come across any issues like this?

[shaws Administrator]

I'm sorry you are suffering. I would ask your Endocrinologist or your surgery if they would consider prescribing NDT (natural dessicated thyroid hormones) that were first given from 1892 onwards. From then on it saved thousands of lives. It contains all of the hormones a healthy thyroid gland would do and.

Unfortunately, if you're in the UK it was withdrawn and upsetting lots of people with that disgraceful decision.

countryhealth.co.uk/ndt/

[Margjeans in reply to shaws]

Can’t you get it from a compounding chemist ?

[Lizzo30]

You could try natural progesterone cream it may help

[Compostella1 in reply to Lizzo30]

Is this to do with oestrogen dominance. Someone has suggested this is an issue but I don’t know much abt it.

[Lizzo30 in reply to Compostella1]

Lara Bridan is an online nutritionist who specialises in women's hormones you would learn an awful lot from her blog hormones can play a big part in autoimmune disorders which includes hashimotos

[Cornwaller]

Do you have a b12 blood result?

[Compostella1 in reply to Cornwaller]

Yes I’ve never had an issue with b12 levels- they were on upper side of norm

[Zarahb]

I don't have any useful advice that you won't already find across these pages but I was also diagnosed with Hashis (Graves before that) and experience exactly what you are describing. I am extremely inconsistent, in terms of health, whether trying to take and raise levo dose or not taking anything.A few things have helped the palpitations (and I picked up these tips here, I think from humanbean11 and greygoose to whom I will forever be grateful because life had become unbearable) - potassium (1 daily banana does it for me), magnesium (I already take quite a few supplements so I get this one from food too, cashew nuts in the evening). I also went totally gluten free after joining the site and reading a couple of helpful thyroid books. It isn't that easy as I am vegetarian and recently cut out dairy product milk (not cheese, eggs etc, I just can't do it!) but it is absolutely worth it for me.

I really hope you find some answers for your specific case, good luck.

[Compostella1 in reply to Zarahb]

Hi- thansk. I’m currently gluten and dairy free… can’t say I’ve noticed much difference.. was going to see abt an Igg test for tolerances. I was on magnesium and I do eat a banana most days…

[jostafford0]

Hello - I'm so sorry you are having such an awful time. I had very similar problems when I started medication for Hashi's. I would say it takes over 6 months from a medication adjustment to settle (that's my experience) and it took years for me to settle on a level dose. I was up and down and all over the place. Spent thousands of pounds going from one specialist to another and nothing helped. I've now settled on 100mg of Levo and feel the best I've ever felt. I take supplements to stop me going anaemic which was another huge problem. Try and not panic and take things slowly, listen to your body and give yourself as much rest as you can. You will probably have to change your lifestyle and adjust. I was obsessed with exercising and looking my best - which I realise now was probably making things much worse.

[Compostella1 in reply to jostafford0]

I also had rly bad anaemia when I was first diagnosed but it’s kept on.. even tho I Hv very heavy cycle and feel that is caused by the thyroid possibly. It’s so hard to figure things out and u try and keep track but it’s exhausting!!

[tattybogle]

i wonder .. have you ever had your TRab antibodies tested ?

TRab (Thyroid stimulating hormone Receptor antibodies) they are the ones that cause graves hyperthyroidism, but there are 3 kinds of them.

1) Stimulating ~ act on thyroid like TSH and cause high T4/3/low TSH (Hyperthyroid)

2) Blocking ~ stop TSH acting on thyroid and cause low T4/3 and high TSH (hypothyroid)

3)Neutral ~ don't seem to do much.

TPOab like you have, can also be present in people with graves antibodies.

And fluctuating thyroid states can also be explained by having 'blocking' TRab.

Have you ever read any of this stuff from Thyroid Patients Canada ?

thyroidpatients.ca/2020/04/... remissions-and-fluctuations-trab/

thyroidpatients.ca/2020/04/... the-spectrum-of-thyroid-autoimmunity/

thyroidpatients.ca/2020/04/... overlooked-how-many-hashimotos-patients/

[Compostella1 in reply to tattybogle]

I will read these links- looks interesting.. I think I had those antibodies tested once.. will Hv to dig out my paperwork!

[humanbean]

Personal anecdote : I had palpitations, tachycardia, and chest pain when I was catastrophically short of iron. I was checked out for heart attack by A&E several times but one thing they never did as far as I know was to check my iron and ferritin (iron stores) levels. They were just always looking for blockages in my cardiac arteries I suppose, and I didn't have any blockages. I had to research and work out my problems for myself.

As I improved my low iron and low ferritin, first the chest pain went, then the tachycardia became less frequent and less severe - but having been triggered I've never got rid of it completely, then finally the palpitations stopped. It wasn't quick though. I had a severe deficiency of iron to make up and it took nearly two years to raise my ferritin to mid-range. Then I had to take a lower dose to maintain my levels where they were. Sadly, although my ferritin did rise to a level I was happy with, my serum iron never rose to an optimal level. But it is better than it was.

Since iron is poisonous in overdose it is essential to do a full iron panel before supplementing. This is an example of an iron panel available privately in the UK without a doctor being required :

medichecks.com/products/iro...

I don't know how available a full iron panel would be where you live - I don't know where you live, for a start.