Anyone else with underactive thyroid & Hashimotos disease...

[Haaaaaland]

Do you consider yourself to have a chronic illness?
I also have other thyroid related issues like palmoplantar pustular psoriasis as well as the chronic fatigue and generally feeling like crap 24/7.

You shouldn’t feel like that if you’re on the correct dose of Levo. I have Hashimoto’s but I wouldn’t say that it affects my quality of life. I’d either push to find the dose that works for you, or investigate if there is another reason that makes you feel like this.

I was on the correct dose of Levo and very unwell on it, if you cannot convert T4 ( Levo) into T 3 it does affect you very very much! Your taking it but body cannot use it as it needs to be converted for energy, and non conversion affects so many woman.
please don’t go down the it must be a other reason route till you make sure your levels are in range. Drs ( male) love to say it must be something else as your bloods look fine (!) hinting it’s depression chronic fatigue etc etc It’s amazing how when the Hashis is actually treated correctly we feel better.

This is interesting!
I had to have thyroid test done for some skin condition I have and my antibodies came back at over 800 they should be no higher than 35 and my tsh or whatever it was was abnormal !
They don't give me anything just a blood test 1 X a year apparently I'm.subclinical I've been like this for about 3 years only recently thou I've been bone tired like I can't keep awake watching TV daytime and evenings it's really strange !
Is this normal g.p don't treat antibodies abnormal results ?

Also to add, it’s worth understanding blood test results so that you can advocate for yourself. Some GPs who don’t understand Hashimotos will tell you up to a TSH of 4 or 5 that ‘your bloods are fine’, which technically might be within range for healthy people, but if you have Hashimoto’s then there is a big chance that you don’t feel good with a TSH of 4. I need to keep mine between 1.4-1.6 to feel normal, so I check my blood tests myself and I pushed for a higher dose when my TSH approached 2 and I noticed that I’m not feeling as usual.

I've had it for 40 year. I don't consider myself to have a chronic illness. I'm also asthmatic, need B12 injections and have type 2 diabetes. These issues do not define me. I understand that other people are not so lucky and I was chronically ill for the two years before my hip replacement when I used crutches to walk the short distances I could manage.

I had Graves disease (overactive thyroid) that’s also affected my eyes. I had my thyroid removed just over 20 years ago and have never felt well since. My eyes have never recovered. I’m on 125mg of thyroxine a day.

To add into the mix, I now have aggressive Rheumatoid Arthritis, so yet another autoimmune condition.

It can certainly make the days tough.

I had a thyroid panel done privately - for TSH, FT4, FT3, TPO antibodies and TG antibodies. My TSH was raised above the normal range and both sets of antibodies were significantly raised. Added to that I told my GP that my mother had Graves' disease (autoimmune overactive thyroid) so that clinched it and I was prescribed Levothyroxine (50 mg) - which did precisely nothing. It's a 'starter dose' and normally would be increased approx every 6 weeks until you see a benefit.

Levo never did do much for me and it turns out I don't convert T4 to T3 very well so I ended up (after many months of going down rabbit holes on various health forums) buying T3 and self-treating (which you should only do if you know what you are doing and T4 hasn't worked). I used Paul Robinson's excellent series of books on the thyroid. You can read more about that here, this is the best of his books to start with:

https://paulrobinsonthyroid.com/the-thyroid-patients-manual/

Isobella Wentz? Yes got her book and went through it with a fine tooth comb early on. I am gluten free now - I did later develop a very bad reaction to wheat/gluten so decided it was best to get off it. It is a big deal going wheat free but I had no choice in the end.

Interesting replies.

I have to admit I am not great at looking after my health. As well as these physical issues I suffer a lot with my mental health, am ND and also have obsessive Compulsive Disorder so am not in a great place all around.

I'm on Elvanse now for ADHD and it helps a lot with my fatigue because its a stimulant but it worries me because I know the only reason I have energy is because of that drug and if I don't take it, I just want to sleep 24/7

Thanks for sharing useful information, everyone.

Are you able to say

1. Which private company you used to get a full set of thyroid bloods (T3 etc) and roughly how much it cost?

1. Can anyone recommend a good, private specialist in the UK that prescribes T3 or similar, please?

Thanks.

Unfortunately yes it takes a very high TSH (I think over 10 now? It used to be lower) for a GP do actually do anything. It's criminal in my opinion, they are keeping people from being well. You could look into going gluten free as that can reduce antibodies for some people. The fatigue of an underactive thyroid is unbelievable, and it's not right for GPs to simply wave you on your way. You could also try the Health Unlocked thyroid forum for more advice.

Medichecks is one such company that sends you a home test kit. Depending on what you want tested, currently they do a full thyroid panel for £65 or an Advanced on with extra tests for vitamins for £89.

https://www.medichecks.com/pages/search-results?type=product&q=thyroid&productListPgNo=1

Other companies also do these types of tests. The question is whether your GP will accept the result. Mine did but I've heard of people where it wasn't. Still it's very useful for your own information.

Thanks for this @GentleSheep Yes, even just having the blood results would be a helpful starting point.

I feel I would need a private specialist for T3 or similar medication. It's just finding one that's difficult.

It's a big "it depends" sort of thing really.

When I was first diagnosed it was an accidental finding - they were looking for something else but ran tests for thyroid too. I took the dose of thyroxine I was given, my levels went to normal, and I felt fine with no symptoms for years. I wouldn't have ever called this a chronic illness as I felt fine.

Then about 6 years ago I suddenly had very severe symptoms, got retested and had a TSH of 64. Despite my dose being put up every few months I'm still wildly out of range years later, on a dose so high I had to get a consultant sign off on the prescription. I've not been symptoms free in years and very much do consider it to be a chronic illness now.

Yes I have both and was diagnosed with a 'very underactive' thyroid 5 years ago.

But I'm very lucky as it's just never affected me other than a dead ache in my left arm, when my thyroxine dose needs increasing.

Other than that, I've suffered none of the symptoms so I just take 112.5 of Levothyroxine per day and hope I never will 🤞

Interesting....ive just been diagnosed in the last few weeks. I was feeling incredibly tired absolutely all thr time and thought my iron was low or something . Dr rand blood tests and my tsh came back at over 200. They've put me on levo 100mg and will review again in 8 weeks as they might need to increase dosage. However the only sympton I had was tiredness and I feel better already only 3 weeks into taking the thyroxine , but obviously this is only early days and will have to see how it goes.